I am finally starting my own thread after chiming in and asking a bunch of questions on other people's threads. My mom is 88 and is on a clinical trial of the drugs Vidaza and Revlimid. She was hospitalized for the first cycle of the drugs in a protective environment and did not get any infections. She took the second cycle as an outpatient, and this time she did get fever and develop an infection. They found strep in the blood. With I.V. antibiotics, she has recovered and is now home as of Tuesday, but the infection really took a toll on her physically. She is having to work back up to her strength before the infection. The combination of the two drugs brings her WBC down very low every time. It sometimes gets to .3 or even lower. This is about her 15th day off the 2nd cycle. Her WBC today is only .3, but her hemaglobin went up to 13.5 from 8.5. from Tuesday. How does hemaglobin go that high without a blood transfusion? She had a blood transfusion in the hospital, but it was about a week ago. I am about to pull my hair out trying to decipher all these changes. When she was first diagnosed with AML in June, her bone marrow blasts were about 36%. After first cycle of chemo, they increased to 49%. Docs said that sometimes it takes several cycles to show if it is working. She is scheduled for another bone marrow biopsy around September 26. I guess that will tell us if it has worked yet. But until then i guess it is a guessing game when the WBC and hemaglobin fluctuate so much.
I am about to pull my hair out trying to decipher all these changes.
You can't let yourself get to that point. Well, you can, but it's not going to be helpful. There are way too many things that happen which we can't immeditaely understand through the course of this disease. First, assume that virtually anything that doesn't leave her sick and shaken can probably be placed under the umbrella of "typical and harmless." Second, make a hapbit of writing this type of thing down and taking it to the next appoiontment with her doc.
I don't know why her HGB would jump so high. I do know there are occasionally going to be bad readings and I'd probably slough that one high reading off unless there was a second test showing the same thing. That's the thing, never sweat one change in a CBC unless it's something that looks really dangerous. Always wait to see if there might be a trend or if things return to normal with the next report.
But you might ask the doc about the HGB. I'd certainly be interested to know if s/he had anything to say about it.
Thanks, Tex. I will ask the doctor. But I was trying to Google on the web what that might mean. Could a high Hemaglobin jump with a still low WBC mean that the cancer is worse? I get so confused about whether or not leukemia leaves you will more red blood cells than white ones or if it makes both low.
Oh, geez, haven't we suggested you stay off the 'net, yet? It's trouble, unless you're a high level researcher who can sort through the BS. There are so many varying reports, some calid, som anecdotal, that it will drive oyu crazy.
I can't say what the jump in HGB would mean. But unless it's AML m7 (I think...the one involving red cells maybe ut;s m6?) I can't see how the HGB hitting high norms would be an issue. Still, I'm more inclined to bet that was a bad report and things will be more normal on the next CBC.
AML is confusing. No doubt about that. Typically, a person will present with extrememly high WBC as the blasts are mostly WBC, as near as I can figure. A high HGB has never seemed to be a problem. I can't figure out how it would be, unless it got into the 20.0+ range or so and I've never heard of anyone with that in my life. However, I presented with low everything. My HGB was down to 5.5, my WBC was in the low 3's or high 2., can't remember right now. And my PLT were low.
Put it this way, I was placed on neutropenic precautions before I ever had chemo. How's that for a kick in the butt?
Try not to worry and just see where the next CBC goes.
Well, even though I know the hazards, no chance of my staying off the internet
I saw on my mom's bone marrow biopsy report that she has AML M2. She has trisomy 8 and 21.
So when most people are at their most critical point with AML, is their WBC always high? I know that the immature white blood cells start crowding out the regular ones, but I have always seen differing answers as to whether the immature ones show up in the peripheral blood in the WBC. So maybe it is true, as I have heard some people say, that it is really the bone marrow biopsy, that shows the true picture. You can't always go by the CBC.
Thanks for all of your replies.
Typically, if you find blasts in the peripheral blood draw, there's a pretty good chance the marrow is failry stuffed with the little buggers. There are always exceptions, I guess. My PCP's lab found blasts in my draw that indicated CLL to him about a year and a half before my actual AML dx. That's when I met the doc who would become my AML onc. Anyway, she did a BMB and found nothing except immature red cells. She couldn't even find the MDS that was developing. So, those blasts in my blood didn't indicate squat about my current state of health, though they might have been and probably were indicative of what was to come. Still, they indicated nothing about the current state of my marrow.
Thus, the only real thing the CBC indicates is when it's time for the doc to go spelunking in our hips. If counts get off track too much, we need a BMB.
I don't know about most critical, I had 20% blasts in my smear and 48% revealed in the flow cytometry, but my HGB was down to 5.5. My endocrinologist had done some blood work and called me during West Wing to tell me to pack a bag, she was pre-admitting me to the hospital. I was to get my butt down there before I had a heart attack or stroke. Again, my WBC were low.
However, when someone has a WBC of 75,000, yeah, the disease is pretty bad. There's just no routine or "always" answers with AML. It takes its own track with each patient.
So, if you insist on looking at the net, please do so with the awareness that whatever scares you the most is probably bunk. Use a sifter and make sure to keep things in perspective. I mean, I don't have any agenda but I don't know that I might have told you some things that are out-of-date or the product of misunderstanding. Always run things by the doc.
Yep. Each CBC report should have actual counts and volume, which is the percentage of the sample composed of of each cell rtype reported. I've never once had a doc or heard of one who gave a rat's butt about the percentages. I imagine if something got really out of whack, that would be helpful. But we really only talk about actual counts here and that's all your mom's onc will usually focus on.
In other words, just ignore those. What we pretty much solely focus on is HGB (as opposed to RBC) and/or HCT, WBC, ANC/NEUT and PLT. And that's what the docs are looking at, too.
A WBC of 1 would translate into 1.000 which is one thousand per unit. I don't know why they use decimals instead of just writing out the number. Guess we've all got to be metric. Beats me.
Hope this helps!
White blood cell count (WBC):
The number of white blood cells (WBCs) in the blood.
The WBC is usually measured as part of the CBC (complete blood count).
White blood cells are the infection-fighting cells in the blood and are different from the red (oxygen-carrying) blood cells and Platelets.
There are different types of white blood cells, including neutrophils,band cells, Segs,T-type lymphocytes, B-type lymphocytes, monocytes, eosinophils, and basophils.
All these types of white blood cells are part of the total white blood cell count.
Normal Ranges: vary between Laboratories but are usually
So this equals this:
4,000 = 4.0
3,000 = 3.0
500 = 0.5
Absolute Neutrophil Count (ANC)
Your Doctor is mostly interested in the patients ANC (neturophils = bands + Segs) The Bands and Segs are the subtypes of WBC that fight off bacterial infections, so the total of them = the ANC, which equals the total of infection fighting WBCs that are available to fight infection.
It is calculated by multiplying the total number of white cells by the percentage of neutrophils.
Total WBC is 4,000 or 4.0 use the value that makes sense to you.
So if your ANC / Neutrophils are 50% of the total WBC then your ANC value = 2,000 or 2.0.
So knowing what the ANC value is more important than the actual WBC value, as this equals the actual number of cells that can fight bacterial infections.
WBC is 2,000 or 2.0
Neutrophil are at 25%
Leaving the Absolute Neutrophil Count (ANC) at 500 or 0.5. At ANC of 500 or lower puts person at high risk of infection.
I hope this helps,
Just saw this. The short answer regarding WBCs always being high is "no". In my case, I was diagnosed when my Hgb was 3.4, and the MDs in the ER were amazed that I was not only very much alive but also totally alert. Yeah, I had trouble with any physical activity - like walking. My WBCs were in the normal range, however - and stayed there - and my plts were around 100,000 - which is low, but not horrendously so. I stayed out of the hospital for 2 months before going in for induction chemo, and what made my MD say it was "time" for me to start chemo was that my WBC had started to DROP. Perhaps I'm just a "weird" case, though. LOL.
They are just not giving me much hope about my mom these days. She has had the two cycles of the clinical trial with Vidaza and Revlimid. Her blasts started out at around 30 percent and are now at 50 percent. Both her doc for clinical trial and her doc in hometown suggest going off the Revlimid because of its toxicity. Her wbc and neutrophils got so low after second cycle she was hospitalized with an infection of strep in her blood. It made her really weak, but she is getting a little stronger now. So they have agreed to go another cycle with just the Vidaza. But they don't seem to be very optimistic. I was thinking it took several cycles with Vidaza to show results. Her blood counts haven't recovered much since her last chemo ended August 30. Today her wbc went back down to .5, so hardly any neutrophils. Has anyone had their wbc stay really low for that long after a cycle of chemo. It is almost time to start the next cycle. I guess that will knock her counts all the way down,
In some respects, this whole thing is a balancing act. We need to get blasts down while allowing counts to get high enough to keep us alive. We need to poison our bodies with chemo while trying to minimize organ damage. Sometimes fine tuning one throws another out of whack.
With your mom's age and disease, it can be awfully difficult to get things in balance and more difficult still to keep them there. Trying to keep her blasts down, her counts up to minimums and her body from being slowly eaten up by the chemo is tough. I think that might be the source of what you're receiving as not offering much hope.
However, if they didn't think it could work, they wouldn't be doing it. I think they're simply acknowledging the difficulty of the balancing act and preparing you if things all fall down. Even the guy on Ed Sullivan with the twirling plates dropped one every now and then. (If your mom's in her 80s. I figure you have to remember Eddie. )
Try to just keep putting one foot in front of the other. Trying to figure out what steps you're going to take on down the road can make you stumble in the here and now. Yes, there are some quandaries in how to proceed. But, after a certain point, second guessing never produces anything but doubt.
You have a wonderful way with words (not saying that sarcastically). All of what you said is completely true about the balancing act. My mom's hometown doc called it "walking a tightrope."
What does the percentage of cellularity mean in reference to a bone marrow biopsy?
Wouldn't it be altered by chemo?
I had to have a series of BMBs a couple of years back. At the hospital I go to for them here in COS, the pathologist actually does the draw. (I know, who'd a thunk it?). He and I had a chance to chat before the procedure and, because I'd had less than 10% cellularity from the first BMB, we got talking about that.
He told me that he thinks low cellularity can be read when they go back to the same place they've been previously and take another sample. His idea is that the cells don't move in to fill up the area and it's just an unrepresentative read.
That said, if it's truly low cellularity, I think that's what you'd expect in any treatment phase. If I understand the whole thing correctly, that indicates the cell growth potential. Normal cellularity produces a normal amout of various blood cells while low cellularity means that percentages of cells might be right but the actual counts are going to be low.
That's just me thinking, not anything I know for sure. Someone else might know, but always check whatever any of us tell you with your mom's doc.
Thanks for your kind words. Words are kind of my medium.
Just responding to your question regarding cellularity and bone marrow.
A general rule of thumb is to think of the bone marrow cellularity as 100 %,
Then minus the person age and that would produce the potential cellularify of the bone marrow.
It also depends on where the bone marrow is taken from, usually we think of the bone marrow bx is taken from the hip bone and the second place is the sterum (chest bone) so that also move the numbers around.
Also after the age of 70 the amount of cellularity decrease speeds up a bit.
Over time the bone marrow is replaced with fat cells due to the decrease in bone stucture. You could related this to when a person ages they have an decrease in bone struture increasing their chances of breaking a bone over time.
So if your mom is 88 years old, she would have a substantial decrease in bone marrow celularity due to age and a decrease in bone structure. But a person always has some bone marrow that is functioning.
So again this is rule of thumb.
I am 51 years of age so I would think I would have about 50% cellularity in my bone marrow.
Below here is a great link to a book on Bone Marrow Pathology
Go to Google and look for the tab that states MORE open that up and then choose books
Then insert " Bone Marrow Pathology by Barbara J. Bain, David M. Clark, and Irvin A. Lampert " then go to page 10 of the book it has graphs to look at and then it is explanined.
This is a great resource.
Chemotherapy Cycles the what to expect. The link below is a great place to start and speaks to cycles and days of a cycles.
Are there improved strategies for managing treatment side effects? Most patients with AML are over the age of 65 years. "For those patients, we’re finding that we can use less intense treatment. It’s still chemotherapy, but it’s less intensive than traditional chemotherapy. Patients tolerate it better, which means they could potentially spend less time in the hospital," stated Dr. Feldman. General rules of thumb: Nadir:
Are there improved strategies for managing treatment side effects?
Most patients with AML are over the age of 65 years. "For those patients, we’re finding that we can use less intense treatment. It’s still chemotherapy, but it’s less intensive than traditional chemotherapy. Patients tolerate it better, which means they could potentially spend less time in the hospital," stated Dr. Feldman.
General rules of thumb:
The nadir time is usually about 10 days after treatment, although this may vary depending on the drugs given. The concern during the nadir time is that the body's first line of defense against infection, white blood cells (WBC) and the platelets, which help to clot the blood, are low leaving a person more susceptible to infection and bleeding. The next dose of chemotherapy is given only after a person's blood counts have left the nadir.
Also, during this time the person could develop mouth sores, decrease appetite and other side effects as this is the when the person is seeing the most effects of the chemotherapy and the lowest in blood counts.
Hair loss is possible around D10 also, if the drug has the side effect of hair loss.
So you are so correct in that your moms blood counts will be recovering and then she is due for her next cycle of chemotherapy.
You will see that the younger people will get more aggressive chemotherapy and that is due to the younger you are, the better you can tolerate / bounce bad from its side affects.
So the doctor really has to balance how aggresive he can be with the chemotherapy. He knows the younger the patient he can give a larger dose, as the patient shoud be able to tolerate it.
Now the older person is harder to treat, how much is to much and how much is needed to affect the cancer. We all know that there can be a huge variance between to poeple that are 88 years of age.
So it is like a tight rope that requires expertise in finding just the right balance. The chemotherapy needs to be enough to treat the cancer but not to strong so the person can tolerate the treatment.
So this maybe this is why they maybe telling you that her chances to getting benfit from the treatment is less, because they may know the amount of drug that is needed to manage her leukemia would be to great for her to tolerate. I know that is very hard to hear. But she will need to decide what risks / side effects she wants to go through and the amount of benifit the treatment will have on her disease.
My blessings are with you and her as these times most difficult.
Thank you so much for the information and the links. Her cellularity on this last bone marrow biopsy was >10, but if she is 88, then I guess 12 would be normal for her. Also, maybe like Tex said, they extracted bone marrow from a place from where they extracted it before. The CBC is showing a WBC of 0.5, platelets of 105, HGB 8.3, MCV 90, MCMH 35, and MPV 8, and she finished her last cycle of chemo August 30. That is one reason we are taking her off the clinical trial. Using both the Vidaza and the Revlimid may have taken her counts down too low to recover. I wonder if the Revlimid could have made her worse.
I don't understand all the terms, but I can see that the bone marrow does not look good. But isn't there still a chance some new cells will begin to generate? If her numbers are still like this on October 10, when she is supposed to start just a cycle of Vidaza, should we wait?
The doctor on Friday said the bone marrow looked empty.
Here is the bone marrow differential
Blasts - 55
Promyelo - 0
Myelocytes - 0
Metamyelo - 0
Bands - 0
Neutrophils - 0
Monocytes - 0
Lymphs - 23
Tramsformed - 0
Plasma Cells - 10
Esosinophils - 2
Basophils - 0
Erythroid - 10
Other - 0
Peripheral blood Differential
Blasts - 0
Promyelo - 0
Myelocytes - 0
Metamyelo - 0
Bands - 0
Neutrophils - 12
Monocytes - 0
Lymphs - 88
Plasma Cells - 0
Eosinophils - 0
Erythroid (NRBC) - 0
Other - 0
A pheripheral smear from 9/22/11 was reviewed. The red blood cells are hypochromic and show mild anisopoikilocytosis with rare schistocytes and elliptocytes; some red blood cells show Pappenheimer bodies. The white blood cells are decreased in number with predominantly lymphocytes. Numerous large granular lymphocytes are present. No circulating blasts are identified. Platelets are decreased in number with scattered large forms.
Bone Marrow Aspirate/Touch Imprint
Te marrow particles are hypocellular. All three cell lines are identified. The myeloid lineage shows maturation arrest with increased number of blasts (55%); some blasts show irregular nuclei and cytoplasmic vacuoles. The erythroid linage shows maturation. Megakaryocytes are present with normal morphology. There are no significant dysplasia identified. Touch imprints shows similar morphology.
Bone Marrow Biopsy
Decalcification procedure was performed. The biopsy was taken from the left posterior ilian crest measuring 1.0 cm. The bone marrow biopsy demonstrates hypocellular marrow (<10%) with scattered immature cells without maturation; immature cells show irregular nuclear contour and form small clusters. Erythroid lineage cells and megakaryocytes are present but decreased in number.
Iron/Special StainsStainable iron is present. Rare ringed sideroblasts are identified.
The Hypocellular marrow is <10 cellularity and mostly contain leukemic infiltrates.
I am writing this with tears running down my face. I will take her anywhere or do anything to help her.
I do know that this is very, very, hard and I feel for what you are going through.
Please ask the questons that you have with the Doctor. I would continue to keep a list that is written. I would do that so you do not have to worry about forgetting something and do not have to try to keep them in my mind.
So I know that a list helps. Because it usually broils down to the same questions, that keep running through your mind and trying not to forget when I get to the doctors office.
Also, when you are in the doctors office, they may say something and your mind goes off on that statement and then you forget the questions.
If you are able, I would speak with your mom and ask her what she needs to know from the doctor.
I am going to provide you with a link to the Ottawa Personal Decision Guide.
This may assist you and your mom is trying decide what is important to her and what questions that she has or may bring up questions for the both of you.
There are 4 tools, I would use the two that are on the bottom. I hope they help.
Another thing that I think people get confused on is the word response to treatment. When a doctor states that a person my have a 50% response to the treatment. Some folks think that means a cure and it could be. But many times it means that there is a 50% chance that the treatment will provide some benifit. Then I would ask and for how long could this benifit last in slowing down the disease.
So you may want to ask what is the likely chance of your mom to get any benifit in improving her disease.
Is there any other clinical trials in the country that she could participate in? if so would she want to travel for these treatments.
Then the tough decision is for her, does she want to go through all of these treatments and the % of improvement is____.
Ask the doctors are there any other treatment plans out there and if so, what are they like, could she get a response, how sick would she be from the treatment? how sick would she be without treatment.
Then I would ask, if she does not do anything, How would the doctors do to support her in staying as healthy as she can.
Would she need blood products?
How likely would it be that she would need to go into the hosptial?
What other care would she need?
Is there a less toxic treatment that she could take that would help some but without all of the side effects of chemotherapy, or lesser side effects.
What are her concerns?
or what is she afraid of? That one makes me cry!
So strong chemotherpy or a less toxic, is there as option? and if so what possible benifit could she see?
You need to ask her what she wants to do, sometimes they do the treatment because they think they would disappoint the doctor or family or there is no other choice.
I do not know your mom, so I can not say,
I do know that my father wanted everything done and I would not have expected that from him. So that was a great lessen that I learned.
My dad was afriad of pain, could it be controlled. The funny thing is that he only took one pain pill the whole time.
My thoughts are only mention, so maybe they would help you and your mom make decisions.
These are tough times,
Blessings to you and your mom.
I hear what you're saying about CBC vs BMB. The thing is that while they can tell a lot about the patient's status from a CBC but they really need to look at the marrow to know the status of the disease. Or else they stuck me a lot more than they needed to and I'm going to start figuring out how I'm going to get them on the table so I can stick them back.
I think Feene's idea of speaking to your mom and finding out what she wants to know is a good idea. If she still wants to know the status of the actual disease, then she might want to continue to have BMBs as the doc suggests. If she's confortable with the idea that she has the disease and it's doing what it's doing, then why bother with that whole process?
There is always the chance that new cells will begin to generate. However, the question, "Will it be enough?" will be brought into the dicussion. Another question is, "Will they be healthy, maturing cells?" I would want to know the answers to those questions as her daughter. I'm not sure I'd want to know as an 88 year-old patient.
Again, the tension between quality of life and length of life need to be considered. I didn't look at the resource Feene suggested but having a tool like I suspect it is might help get the conversation going if it's stalled or never gotten off the blocks.
I don't presume I can understand much of what was in the report and I understand your desire to do whatever you can to help her. I think I'd get the best thoughts I could from her doc and, maybe, another. It might be that the most significant thing you can do for her is to help her get talking about what is of primary importance to her.
Tex and Feene,
Thank you so much for all of your insight. My mom doesn't really like to talk about it much. She always has us come with her to the doctor, and she always tells the doctor "whatever my daughters say." But she does always say to them "I want to live." But we have seen how bad she felt when she was hospitalized with the infection that was strep in her blood, so we don't want her to live like that, and she doesn't either. I think we have gone from one extreme to the other. We went to M.D. Anderson because her first doctor in her hometown didn't feel that any treatment would be beneficial. He thought it would make her sicker than her disease. Mom and Dad went home from that appointment and really spiraled down mentally for about a week and then called my sister and I and asked if we would take them to M.D. Anderson. We went there hoping that since they treat so many patients with AML, they would tell us what was best for Mom. Turns out they didn't recommend doing just the Vidaza, although they said it was an option. I believe they really wanted her in their clinical trial. At the time they could not promise the clinical trial would do anything, but the two meds, VIdaza and Revlimid, had been used separately with MDS and then together first in a trial at Cleveland Clinic. The reports seemed promising. I remember when we all looked over the consent form, Mom didn't want to read about any of the side effects. She just told us to read it and sign it. Revlimid had A LOT of serious side effects, but the doctor also told us that it would be better to try to get the disease up front so that it could be maintained better later down the road. None of us had any experience with chemo, but they told us the side effects would be minimal. Looking back now, I think our family is glad we at least tried that, but now I think more that Mom wants to concentrate on living but with good quality of life. So I am thinking if we now just do the Vidaza as a maintenance drug, and Mom doesn't have a lot of side effects that give her infections or make her unable to get around, we will all be at peace with that. We have really already done all that we can do. We talked to the docs and M.D. Anderson about other clinical trials, but even they pointed out the unknown. So I think as much as Mom and our family would love to see her in remission, we don't want to put her through some other harsh treatments that will make her really sick. I am thinking that if she feels good every day, and she maintains her blood counts, and we try the Vidaza, then that is all we can do right now. I know from talking to Mom and Dad, as long as she feels good, they nor we want to go the hospice route yet. Trying a little of something like the Vidaza will still give us all some hope, especially after reading some of the stories here. Again, all your opinions are invaluable. Thank you.
I think your message has hit the nail on the head. My wish for your mother that she is able to have some Quality of Life prior to her disease getting worse.
Also, please let you mom know that we all appreciate that she was willing to be a part of the cure, even though she may not have receive any benefit from the medication that she tried, but now the medical doctors can used the information that she was able to give. Without people enrolling themselves onto clinical trials there would be no progress. So, Please Thank her for all that she has done.
Also, please do not think of Hospice is all about dying, it is very much about living the best that you can while you can.
So, I would ask you to look into the Hospice program and see what they could offer your family and your mom, so that she can be the best she can be and enjoy her family.
Bless you, your family and your Mom
Wow, your mom is having ya'll make her decisions? She must be really scared but making you make her choices isn't really fair to you. Not criticizing, family's each have their own system for problem solving and what works, works. I'm just going to say to you at this point that it could leave you second guessing and dealing with guilt issues. If you're ever tempted to buy into that nonsense, remember that this is your mom's choice and all any of us are doing is whistling in the dark to some extent. We never know that we made the right choice...well, almost never.
Understand that as the disease progresses all of the things you're trying to avoid are likely to happen. These are things that happen to most folks when it is unbeatable. I think the only thing to do at that point is to face what happens knowing we got there on our own terms. Sometimes, that's the only victory we take from this fight, but it is such a big victory.
With that said, I hope the Vidaza's able to keep your mom in good shape for a long time to come. As always, please keep us posted on how things are going and how we can help.
Before your mom gets to the point of selecting no treatment, and as difficult as this may be for you, call several hospice companies in your area and ask questions. And if you can't bear to talk to them, send them an email (I did). Let them know where things stand and ask some questions about their services. Are blood transfusions or platelet transfusions a part of their services? How often will they visit? Will anyone stay overnight with you if you do home hospice? As hard as that was, I did contact a hospice company, one that my mother ultimately went on service to. It was good to ask questions in advance because not all hospice companies are the same. When my mother made her decision to stop treatment, the hospice company the oncologist contacted refused to come out because she still had a PICC line. They insisted it had to be removed. After a day of phone calls between the oncologist, his nurse, myself and calling the other hospice company, we all agreed that mom should go on service with the company I originally spoke to.
Hospice will come out and interview you and your mom, decide what medications she should remain on to provide her with comfort. You should also decide whether your mom wants to pass away at home or would she (and thus your family) be more comfortable with an inpatient hospice arrangement. If your mom chooses to pass away at home, I can't say this enough - you cannot do this alone or in combination with your father. Rally the family members and especially have someone with you overnight! If they suggest a hospital bed, ask your mother how she feels about that. My mom and dad didn't want to be separated but we opted for the bed the day before she passed. It did make life a bit easier for both her and us.
Even if you don't need the services now, outreaching may give you some peace of mind. I wasn't ready to give up on my mom either when I sent those emails but I knew in the back of my head, that things were not progressing well and that eventually this discussion would need to come up. That discussion did come up about two months after I did my outreach and I was glad I had the information when the time came.
My mom was at 89% blasts when she made her decision. It was the right one for her and we all stood by it. No regrets - she fought a good battle against a terrible disease but her system was overwhelmed and it was time to let go.
You'll know the right time when it comes. For now, if she wants to fight the battle, let her. If she's ready to let things go, help her on her journey.
Thanks so much for your advice. We did call in hospice for my father -in-law, so we talked to several agencies about what they do and don't accept. But I agree you should know ahead of time. RIght now my Mom wants to fight it all the way, so we will keep on with the chemo.
Reading Louise's note, I also remembered to suggest that. if you do go to Hospice, find out what their policy is on transfusions. Most of the Hospice organizations I've heard of will not take a client if that person is receiving transfusions. They consider it treatment and I think that's ghastly. To me, blood is on the level of feeding a patient. It's not going to fight the disease. It just keeps them alive.
Anyway, know where you are on the subject with the company and within your family. I'm not sure if it's state law in many caases or just crappy rules on the part of the Hospice but it's something you need to go into with your eyes open.
I agree that someone that is getting blood should be allowed into hospice. As I see it, it is a comfort measure.
If your Hgb is low you are not as comfortable and we all know that.
If your platelets are low, increase chance of bleeding,,, so having platelets is comfortable.
So,,, I would not take that as a reason for not letting someone into Hospice. I know they all have rules, but some rules are made to be broken.
I see it as, if someone has a fever would you not give them some tylenol.
Makes me so frustrated, to hear such craziness.
I am 51 years of age so I would think I would have about 50% cellularity in my bone marrow.
At 53 the docs told me that they would expect my cellularity to be around 40%. Like so many issues surrounding this stuff, there is a difference of opinions and standards.
The good thing is that my mom is saying today that she feels better than she has in a long time. After reading over a lot of the threads last night, I think I have come to the conclusion that many times with the older patients it is better to just go on how they feel and their CBCs instead of doing so many bone marrow biopsies. It seems like the doctor is basing her prognosis solely based on the BMB. Just as Tricia said, her mom hasn't had a repeat bone marrow biopsy, and she is the one who is on month 27 of the Vidaza.
I am sorry if I have not expressed how much I appreciate all of your answers and comments. This board is the best place ever to vent your feelings, ask and get answers to questions, and sometimes find out more than the doctors tell you! Thanks so much to all of you. I also want to send up prayers for everyone on this site that is touched by some type of cancer.
Has anyone else who has gone through this with a family member seen a counselor? I think I need someone to talk to. Although this group is like therapy. I was holding up well at first, but I think now it is all getting to me. I find myself crying a lot during the day or night, and I have not been as attentive as I should to my daughter and husband. But my bond with my mother is so strong, and we are so close. They don't seem to sympathize with me as much as I would have thought they would.
I am the caretaker of my partner ( now of 29 years) who was dxd with AML in MArch of 2010. During the first 9 months of treatment and recovery ( she had an auto SCT), I went to monthly meetings sponsored by the AMerican Cancer society local branch just for caretakers. It was nice to be in the company of others who were in the rabbit hole of being a cancer patient caregiver. There were 3 support people always there who offered free couseling to anyone who needed it. If you feel like you need to talk with someone you probably will benefit from finding someone who understands cancer patients and caregivers. My partner started counseling when she was in patient during induction and has continued seeing a cancer counselor bi weekly as an out patient. This is a life altering journey and it is your mom.... find some one to talk to and a safe place to get some support
I need some expert advice on this subject. Most of you are very familiar with this, but I am still new to this.
I can't answer your question about the neupogen/neulasta - don't know enough. As far as the neutrophil question goes - mature cells are always the "healthy" ones. Leukemic cells are blasts that are unable to develop into mature cell, so there aren't enough mature cells to do the job they were designed to perform. Alternately, the problem in some leukemias can be that something "signals" the precursor cells to make more WBCs and less of the other cells so there are too many WBCs and not enough of the other types to do their job. This is what, in some leukemias, can cause bone pain. It depends on where the blood manufacturing system has gone awry. Anyway - assuming the picture is clear enough for you to see it, it shows the basic way blood cells are "manufactured". There's a hematopoietic stem cell that is capable of becoming either a common myeloid progenitor cell or a common lymphoid progenitor cell. If something goes wrong with the common lymphoid progenitor - that in turn produces NK cells, T-cells and B cells - you've got a lymphocytic disease. If the problem is with the myeloid progenitor or anywhere in that lineage, you get a myeloma. So the myeloid progenitor cell can become a megakaryocyte - and that turns into thrombocytes (platelets), an erythrocyte (RBC), a mast cell, or a granulocyte - which in turn produces, neutrophils, basophils, eosinophils and monophils which produce macrophages. So in general if you've got neutrophils, they are all "grown up" cells and will do their job properly.
The problem with finding a cure for leukemias is that there isn't a single "cause" or mechanism or reason why the chemical signals aren't working properly. Not every treatment works for every type of leukemia. I sometimes think of all knowledge as "peeling an onion". We start in pre-k barely scratching the surface, and go into deeper layers with more education. In most sciences, even the "experts" aren't anywhere near the "core" of the onion: there are still many layers left to be peeled away. Perhaps in 100 years....but then I fully expect that they'll find yet more layers!
So from what I am understanding, neutrophils are always mature cells?
That's been my understanding. I think it's that blasts would be counted as blasts and only healthy cells would be identified as a type of cell. The exception, as I've understood it, would be when they speak of WBC way over the range. Those cells would include blasts but the concept of WBC is very generalized when you consider how specialized the various cell types are.
As I said, this is my understanding. You'd want to check with her doc to get verification.
I didn't know there was a specific type of leukemia when there's a greater likelihood of encouraging blast production with Neupogen than any other type. I've read concerns that this could happen with leukemia in general but never really followed the discussion.
I never had any success with growth factors of any kind and one seems to have put me into a week of really high fevers. That was never concluded but that's what I blame. Guess my doc shouldn't have mentioned the possibility.
If you learn more about this, it would be great if you shared it with us. Whatever we can learn is always helpful down the road.
From going to the American Society of Hematology website, I got the understanding (of course this may be a mis-understanding ) that over-production of WBCs is caused by a "switch" being "stuck" in the "on" position. Gleevec has been shown to work for certain leukemias by maintaining the switch in the "off" position, so that it stops this over-production. Over-production of WBCs means that the marrow isn't producting enough of the other types of cells - thus causing low platelet and RBC counts and all the issues that follow on from that. I know that there are diseases that cause mal-formed and dysfunctional RBCs, but I'm not familiar with these issues involving WBCs - although I'm sure they must exist.
Ask the MD is always the best policy for issues such as these.
Thanks so much for all the feedback about the neulasta and neupogen. Here is the scary part. Yesterday when my mom was finished with her 5th day of this cycle of chemo, the nurse came up to us and said she had an injection of neulasta for Mom. I questioned it, as I had remembered hearing someone at M.D. Anderson when we were there say that they would not give Mom a white blood cell booster because it might increase her blasts. Then I also remember asking her doctor in her hometown after we got home and that doctor saying the same thing. So they said they would page her doctor and double check on that. After trying to get the doc for about 30 minutes, I called the office and found out doc had left to go out of town earlier that day and that someone else was supposed to be covering. But that doc never answered the page. So I found out the name of the doc who was covering and the nurses paged him directly. That doc said to hold off on the neulasta until Monday until we could talk to Mom's doc to see if she really wanted her to have that. Meanwhile the nurse showed me the paperwork with the orders that said "give Neulasta on last day of chemo." So someone definitely had handwritten it on the orders. Last night I went ahead and sent an email to Mom's doc, knowing she would check it when she got back from out of town, but I actually got an email reply from Mom's doc last night saying that Mom was not supposed to have the neulasta because she has a high percentage of blasts (59%). I haven't had a chance to discuss this with her, but I would like for her to find out who wrote it on the orders. There was a signature where the doctor is supposed to sign off, but as is with lots of doctors' signatures, it was illegible. I think sometimes the doctors (apologies to any docs reading this that don't do that) just sign off on the paperwork before it is filled out and trust their nurses to write the correct info. So it turns out we told them we wanted to wait about the injection. Good thing we did, as doc said Mom wasn't supposed to have it. So Tex, in comment to your reply, I guess it is not that Mom has a certain type of leukemia that shouldn't be treated with neulasta or neupogen, but instead I guess anyone with a high blast count should not. I will find out more next week.
It might be worth pursuing the "certain type" question re: Neupogen, etc. I don't have an idea. And the fact I haven't heard of it before means nothing. There's a lot I haven't heard before.
It might be that the order was from a doc, maybe even a resident or fellow, that was reading from the protocol and simply didn't read the entire report or didn't know him/herself that there was a problem with it. So, great catch on your part and good job of advocating for your mom. This is a big reason we need caregivers, even in the hopsital.
"Leukemic cells are blasts that are unable to develop into mature cells, so there aren't enough mature cells to do the job they were designed to perform."
You know how mature white blood cells only live a short time - less than 24 hours...but if you have a blast that is unable to develop in a mature cell, does it die off like a regular healthy white blood cell at some point or does it stay in your bone marrow until it is eradicated by chemo?
Go to the myelodysplastic syndrome tab on the LLS site and download the PDF. If you read down you'll come to the part where they talk about how hypomethylation agents (Vidaza and Dacagon) work. They were developed for use in MDS patients but are now also used for AML patients who are older, with more co-morbidites or who have not achieved remission with standard induction chemo.
Hope that helps.
You can click on the "download PDF" link - it's near the top. If I recall, it has an "order item" and next to it "download PDF" link.
if you have a blast that is unable to develop in a mature cell, does it die off like a regular healthy white blood cell at some point or does it stay in your bone marrow until it is eradicated by chemo?
Good question. I've always figured that they don't die off as they don't hit "old age." If they did die off, I'd think they'd get swept out earlier and the system wouldn't tend to clog up with them. But my logic doesn't always ring true with reality.
Like I said, good question. I'd be interested to see the answer.
I know I responded to Tex via email - those responses don't seem to show up here. Oh well.... I said that I thought of it like stages of a butterfly development or that of other insects that go through similar developmental stages. The final stage - the beautiful one (that in terms of blood cells) that does "the job" isn't necessarily the longest. A lot of butterflys and other insects spend more time in the caterpiller stage than in the adult stage - when they are really nothing more than reproductive machines. (Exception, of course, is the monarch - that flies all the way to Mexico to reproduce.) Anyway, my take on it is that the blast may live a lot longer than a normal WBC, but the problem is that the marrow keeps on producing them instead of precursor cells that can actually develop into fully mature blood cells of the three lineages. They wouldn't count an immature neutrophil as a neutrophil - it would be counted as a blast. Some of the blasts are partially developed - but they can't "do the job", so to speak. I've never heard of a blast being "a wolf in sheep's clothing" ;-)
Thanks - that is a beautiful analogy, Karen. What I am hoping then, is that in between bone marrow biopsies where it actually shows the blasts, I can be hopeful when I see the neutrophil count going up or the platelets going up - I am assuming that would be a sign the bone marrow is still producing positive cells in those lines.
Sometimes the platelets and the HGB go up but the hematocrit stays the same or low. How do those relate to each other. I was thinking hematocrit was an indicator of low blood volume. So looks like if platelets were going up and HGB was going up, then hematocrit would go up.
Here's a link to the Wikipedia article. Hct indicates the volume of RBCs in a sample of blood. The cells themselves may have a higher percentage of Hgb than "normal". My Hgb has been WNLs since early August, but my MCH is high - so that means there's more than normal in each cell. It means that the individual cells are working harder than normal to carry oxygen around the body. (Wonder if they get a bigger pension when they "retire" - LOL. Platelets are of another "lineage" My plts went really high but have now "settled" to what my MD says was my "normal" level prior to developing AML. I think it's like there's a fire, so lots of fire houses respond, but once they get there, they see things are under control, so some of the fire trucks can go back to their 'homes' to be ready for something else. They really aren't needed. I know from reading/looking over my own labs, that the different parts of the CBC seemed to fluctuate in what, to me as an 'amateur', a very weird way. I'm sure it makes perfect sense to my MD - thank goodness!
And here's the response I got from my MD when I emailed him this morning. I asked how long blasts live in the peripheral blood.
"Neutrophils live about 6 hours or so in the blood while some memory cell lymphocytes may actually live for more than a decade. Blasts typically have a high turnover rate, but I don't know how long they live in the blood per se. They die fast but constantly replete themselves. That being said, there is reason to be hopeful that if the count has only gone down recently, it will continue to do so."
He said that last part because he thought I was referring to myself.
BTW, anyone here know how to copy and insert text that's NOT from this board and is NOT an image or a table??? I'm not much good at this stuff.
Sorry to keep asking so many questions, but do you know how long blasts live in the bone marrow - it seems my Mom has had blasts in her bone marrow for some time, and they keep increasing, but they are not yet spilling out into her peripheral blood. So are those blasts in the bone marrow just sitting around taking up space? When do they decide to move in the peripheral blood? I am getting so confused (not because of you). With AML I understood that mainly infections are what takes the life of someone with AML. Does the bone marrow finally turn off and quit making healthy cells? I thought it was that the blasts crowded out the good cells. But if the blasts don't have a long life span, then I don't see how they could crowd out the others?
Well the blasts keep dying off, but they are also being made to the exclusion of normal cells of any lineage. I don't know at what point they move from the marrow into the peripheral blood. I was told (back in March) that I had 6% blasts in my peripheral blood but 29% in my marrow. BTW, not all the blasts are totally undifferentiated "blobs". Some have started along the path to one line or the other but then failed to develop further. Ergo, the USUAL thing is for there to be far more blasts in the marrow than in the peripheral blood. Now back at the end of July I had NO blasts in my peripheral blood on a regular, manual CBC, however when they did a flow cytometry, I had 1.1% blasts. In early September I had 0.9% blasts, and we'll see what there is tomorrow when I go see my MD. Down even a couple of tenths is good, up would mean it's coming back, and I'll be a very unhappy camper. Having said that, we don't know what's in my marrow, because of a failed BMB at the beginning of August - an experience I'm in no rush to repeat any time soon.
Re: blasts vs. normal cells: the mutation(s)/chemical signals cause the marrow to make blasts rather than normal cells. So if someone has 50% blasts, they have 50% fewer normal cells that can carry out whatever task their normal function is. Because the malfunctining cell isn't always just the multi-lineage precursor - therefore affecting all three lineages equally, some types of cells are made and grow up in a normal fashion more than others. For example: I had a totally normal WBC count when I was diagnosed, I had low platelets, but they were not horrendously low to the point of putting me at risk of a bleed - so I was totally asymptomatic in that regard. It was my RBCs that were totally out of whack. Other people here have had different presentations. There are also "signal" issues in some leukemias that cause the body to make excess cells (particularly WBCs). Those cells really do crowd out the other cells and pack the marrow - thus causing bone pain. For some of these people Gleevec works to "turn off" the signal that causes all those extra cells to be made.
I'm thinking that all of us here need a course in hematology for beginners (or maybe we've done the 101 course and need the 102 course or even the 200-level course. We are asking questions wau beyond the ones answered on the LLS site or on any of the other "patient-friendly" sites out there. On the other hand, every time someone asks a question, and we all 'bat' it around, we are all learning something new. Yay us!!!!
So at some point in the course of the disease, should I expect my mom's bone marrow to stop producing red blood cells and platelets completely?
I don't think it will get to that point. They might decrease but I don't know if it ever goes to complete stoppage of cell production. Not to be insensitive but I imagine the body would shut down before it ever got to that point. There wouldn't be enough cells to do the jobs required to keep us working.
I know I responded to Tex via email - those responses don't seem to show up here.
Not sure what you did but I haven't gotten anything from you on this. Perhaps it's out there in the ether waiting to roost.
Since you have a doc so willing to answer, here's another question. Does it take longer for blasts to enter the bloodstream, than healthy neutrophils or other cells since they're not maturing? Might lead to an interesting answer.
Thanks for doing the legwork.
I really don't know. I do know - from reading it somewhere - that there are people out there with more blasts in the peripheral blood than in the marrow and that it's not considered a good prognosticator. Again - I can't recall where I read that. Too bad "Oncologist Husband" seems to have disappeared from the Boards - he'd be able to answer your questions.
I was thinking about him today, too. Hope I didn't chase him off by asking him so many questions. I guess I was taking advantage of his knowledge and research abilities.
But maybe it wasn't me. Hope not.
Still, I can't imagine how the peripheral could have more blasts unless...do you remember if they were talking about folks with AML sarcomas?
No, I don't recall. I just remember reading that it CAN happen and that it's not a good sign .http://http://www.nature.com/leu/journal/v19/n9/full/2403876a.html Here's a link to an article in "Nature" about it, but I don't know that it's the one I saw before. Boy, aren't we educating ourselves - and each other!
LOL. I dont' mind doing research - as long as no one asks me to write another paper - or a thesis. I also don't mind trying to "puzzle out" all the medical jargon that's at the "800-level" when I haven't even taken the "101" course yet. It's also not that I'm not a good writer - I am - but I hate having to "produce" to a schedule. My husband keeps at me to go get my doctorate, (he says so he can call me "doctor" ), but I think coping with leukemia is now my priority.
The funny thing is that a friend, who is in a PhD program for Music Therapy, asked to see my master's thesis since it involved using music. (big breath: "The Effects of Subject-Chosen Sedative Music on Heart Rate, Blood Pressure and Respiration Rate Post Exercise".) Unfortunately, as I started the lit review in the autumn of 1986, Columbia U. didn't have Word yet (and I don't even think it was "out" yet in any case). So it's in a word-processing program that doesn't exist any more plus it's on floppys, so I can't reproduce it in any case. So now I'm typing it all over (and noticing my typos the first time around ). I don't ever want to do that stuff again - but research leukema/treatments/drugs - hey, that's "educational". I'm even following the UVA med school hematology course that's online. Now I just need "genetics for dummies", and I'll be all set.
But seriously, Tex, I have learned a lot from you.
Seriously. you've brought up some things I've never heard of before. Your online reading has gone a different direction than it seems to for most others. I've heard more new and different ideas from you than I have around here in a long time.
Okay, enough with the mutual admiration society.
I remember walking out of my last exam in seminary humming "Pomp & Circumstance" just loud enough to irritate everyone else still taking the test, thinking I'd be back for my doctorate in a couple of years. That was 25 years ago. I quickly realized I'd loved school while I was in it but I never wanted to go back. So, I think I won't ever be Dr Tex.
You might lso check with your local LLS chapter to see fi there's anything they provide. I really don't remember seeing a caregivers support through here but I haven't checked services in a long while.
I know it feels good to write. It often feels better when you hear and can make eye contact with the person saying, "I hear you."
You'll be okay.
I haven't posted in a while about my mom. She is 89 today - it is her birthday! After she went so far downhill with her counts and an infection with the Revlimid/Vidaza trial, we opted to take her out of the trial after 2 cycles, and she has been taking only the Vidaza by IV 5 days at a time and then 4 weeks off. She has been doing better. Just this past week though her PICC line in her arm that was inserted in July when she started off at M.D. Anderson had to be pulled because her arm became really red and swollen and some pus was at the insertion site. They tried to insert a new PICC line in her other arm Thursday but said her veins were too small. So now they are thinking of a Port A Catheter. I am a little worried about that. Any other options any of you can think of? The nurse in Pulmonary where they were trying to put in the new PICC said that sometimes they can use the tubes they use with infants with the elderly for the PICC lines, but her doc is leaning toward Port. What is a Hickman? Any help here would be greatly appreciated.
A very happy birthday to your mom - and congratulations on reaching the ripe age of 89.
Portacaths are implanted under the skin. Once the incision heals there is much less risk of infection: the person can go swimming/shower, etc. without worrying about it getting wet. I'm surprised they don't use it more often. A Hickman is a catheter inserted into the vein in the neck or chest. It can have two or three ports. One of my patients once called it her "udders". I think some of the others here who have had one can speak to the pros and cons.
(I don't know if these links will work, but you can cut and paste.)
Good to hear from you and happy birthday to your mom. She's certainly made a fight of it and please let her know she has a fan in CO.
I've had a Hickman. Never seen one inserted in anyone's neck, though they had to cut a hole in my neck to anchor both of the Hickman's I had. (It's weird, the tube kind of comes out and goes right back in. You just have a little band in the tube hanging out and it was sutured in.) At least, that's how I remember mine. It's been awhile and I have chemo brain. I do know I've got scars there.
I don't know how anyone can stand a PICC. I had one in for a couple of days between my Hickmans and thought I was going to go out of my mind. The Hickman hangs out of your torso with a couple or three lines. It's pretty low maintenance but there seems to be a high degree of infections with the line as opposed to other ports and catheters.
Installation isn't very painful, With my second one, I was awake, though heavily drugged, while they put it in. Ir wasn't as complicated as I expected it to be.
Anyway, I'm so proud of your mom. Please do check in more often and let us know how she's doing.
I have been posting and commenting on other threads but haven't updated this one in a while. My Mom is still taking the Vidaza every 4 weeks for 5 days at a time. You may have read that we took her out of the clinical trial at MD Anderson back in September after she got a really bad infection and counts came down - the trial was Vidaza/Revlimid and we and docs think the Revlimid was bringing her counts down too low and making her too sick - she was 88 when diagnosed in June 2011 ... she has been doing well but this weekend came down with a high fever... has been admitted to hospital - they have been trying to find out source of infection while giving IV antibiotics ...this morning the C-def (sp?) came back positive, and they are now treating her specifically for that. They think it developed from haven taking preventive antibiotic for so long. Infection has brought her counts down really low (or at least we hope it has been that and not the AML itself), because not long ago her wbc was 1.9 (when diagnosed was 2.0), but now has gone down to .4 and platelets are 50 ....will find out her counts for today in a little bit - however, she feels good, and is very alert, and the other IV antibiotics must have brought her temp down because it has mostly been normal the past day and a half... so hopefully the antibiotic (flagyl?) will get rid of the infection.... we are hoping her counts will start to rise with improvement of infection and that the Vidaza has not quit working... thanks for all your wonderful posts and this site, which has been getting me through my mom's illness.
Thank you, Karen
When we took mom to the doctor for her checkup a week ago today, we told the doctor she was having a lot of loose stools ... so she sent us home with little bottles for Mom to get samples in .... didn't tell us to keep them on ice... so when Mom was admitted to hospital they couldn't use those samples for tests... had to wait and get sample in hospital ... so she has probably had it for a while..... can taking a probiotic with preventive antibiotics keep you from developing c-diff? My sister just told me they are putting her on oral antibiotics for 24 hours, and if fever doesn't spike, she can go home tomorrow. They are giving her flagyl (sp?) for the c-diff and moxifloxacin (sp?) to replace the amoxicillin for preventive antibiotic, and I have asked them to put her on probiotic. I am going now to take over for my sister and stay with my mom this afternoon and rest of night. May not have access to computer.
I hope that your chemo goes well, and you get out of the hospital as soon as you can. I appreciate all the posts from you on all subjects.... you are very informative... I will be praying for you! Hugs to you!
Thanks for the update. I'm glad your mom seems to be hanging in okay.
What role would the decitabine have played in dropping her WBC? If she's feeling good, I'd guess her HGB is okay and, ultimately, all counts will trend the same direction if/when there's a relapse.
Keep an eye on her but don't panic. C-difff appears to be a bugger bear and with her immune system compromised, who knows what could be affecting what?
Let us know what's going on.
The day I wrote in on June 19 that I was taking over for my sister to sit with Mom at the hospital, we had another shock. She was supposed to be going home the next day, but while I was sitting with her, she said she thought her heart was beating fast. A little after that she said she had to go to the bathroom. She got up from bed and walked with walker to bedroom. A PCT was in the room and helped us. I was talking to her through the door to see if she was finished using the bathroom. She was talking just fine, and then she was quiet for a little bit, so I opened the door to help her out, but she was sitting on the commode drooling and starting talking jibberish to me. I knew then she must have had a stroke. The PCT and another nurse picked her up off the commode and took her to the bed...they were trying to get her oxygen sat, and I was saying that they needed to call for help. Then before I knew it the stroke team had come in .... I could tell Mom still was understanding what everyone was saying but could not communicate back. After calling my father and sister to confirm, they administered the clot busting drug TPA after a CAT scan revealed a shadowed area in a major artery in her head, which they said they felt sure was a clot. We were worried about taking that route since her platelets were only 50 but felt we had to. They also gave her two platelet transfusions. She was in ICU for 30 hours and we all 3 sat at her bedside. She could talk a little and knew we were there. Then they moved her to a step down stroke unit. There we starting seeing the neurologists. The attending said he thought the VIdaza caused the stroke - but her hemo/oncologist said Vidaza didn't have a greater risk of stroke than other chemos. Then they were saying she probably had gone into atrial fib and threw a clot, but she had not had documentation of having been in a fib more than a few beats. So neurologist wanted to put her on Coumadin, but some of his colleagues and my mom's hemo/onco doc disagreed because of her low platelets. I finally got them to call in my cardiologist that is a specialist in arrhythmias and he suggested she go on amiodarone to keep heart in rhythm, and he also disagreed on the Coumadin. Have you ever heard of someone with AML being on Coumadin???? I now wonder if the drug Avelox could have caused her stroke. They had switched Mom to Avelox for her preventive antibiotic and she had just taken one an hour before the stroke. I know that class of drugs affects your Central Nervous System and I think it may have put her heart in an abnormal rhythm. Her cholesterol is only 133. It is like a nightmare that never ends. She was doing so well on the Vidaza. So my sister and I took turns staying with her in the hospital until she went home Saturday. They wanted to send her to rehab, but she was not very well oriented in the hospital, so we have a sitting service with her and my dad at home and we are there as much as can be. We also have home health care coming in for physical therapy, occupational therapy, and speech therapy. She can only drink thickened liquids and pureed food. They said the part of her brain that was affected was speech, so she is having a hard time telling us things, but they said it did not affect speech recognition, and they said with therapy she could possibly get use of right arm and leg back, but right now she can't get out of the bed without assistance. Her HGB is 13.9 after getting two units of blood Saturday. Her wbc is .7 and platelets 59. Her doc wanted to do bone marrow biopsy in hospital to see if Vidaza still working, but we said we would rather wait, especially if the course of treatment would not change based on BMB results. We really hope the VIdaza hasn't stopped working and that when she gets a little stronger she can start it again. Between a rock and a hard place...
Oh gosh, how awful for your mom and for you and your sister! i'm so very sorry she's having to go through all this. I think you were right to take her home. She can have home therapies, and if she's not too well-oriented, home is the place to be if she can get the care she needs. I'm also glad you thought to call your cardiologist, because no, I have never heard of giving coumadin to an AML patient. You can look up potential side-effects for all the drugs your mom was taking. Sometimes I wonder where the MDs/Pharmacists get their info: I just took an antibiotic. The pharmacist cautioned me about eating dairy with it. I checked it out on several website, and not one mentioned dairy as a precaution while taking that particular drug. It gives one pause.
Your mom may do very well with lots of therapy. The main language production centers are in the left side of the brain - which is why she's having motor speech problems but not comprehension problems. Of course the motor control area for the right side of the body is also in the left side of the brain. You can get her MD to more fully explain this stuff to you and you can check it out online. The problem is the neurons cross over from one side to the other. About 1/10th of left-handed people have the language areas reversed (ie.on the right side of the brain). Trivia for the day.
I hope and pray your mom gets good therapies at home and finds some peace with being at home rather than in a rehab center. It's going to be a tough couple of months for all of you. I guess at some point she will have to have a repeat BMB, because if the Vidaza is no longer working, there's no point in continuing with it. There are some other options out there though these days.
I will certainly keep you and your mom in my thoughts and prayers. Please keep writing in and letting us know how things are going. If you need any rehab suggestions, don't hesitate to ask me.
I'm sorry to learn about what your mom's been going through and what you will all be dealing with for some time to come. Have I ever heard of an AML patient on Coumadin? Maybe, it sounds weird and that's what I think I remember thinking when I read about it. Then again, have I mentioned I have chemo brain?
It's going to be a long fight but your mom's a trooper and I'd count on her certainly making progress if not a recovery. I hope you'll tell her there are a lot of people out here rooting for her.
Keep us posted and keep the faith.
Mom is still at home having physical therapy, occupational therapy, and speech therapy. It is going slowly, but she is progressing some. I wanted to ask a few questions to anyone who might respond.
Mom was scheduled to have her Vidaza treatment the week she got the infection and was hospitalized, so she hasn't had a treatment in about 8 weeks. Her doctor want her to be stronger, but her counts are about what they have been all the other times she has had the Vidaza. Just hope we don't lose any ground with the Vidaza that she has already been taking since July. Guess that is just a hard call. Any opinions?
Also when Mom got her last infection and they found out it was C-diff, they said she probably acquired it from having taken the preventive antibiotics for so long, so I asked if this go around she should possibly take a probiotic with it. The doc agreed and she has been taking one for about 3 weeks. But then when I was about to buy a new bottle of the acidopholous (sp?) I was told by pharmacist that there are several types of probiotics. Another they said is lactobacillus - on one of the bottles there was a warning for pregnant women, so I started wondering if it is ok for someone with a compromised immune system to take a probiotic - please let me know what you think about this - of course Mom not pregnant at 89 but just starting wondering about low immune system being fed bacteria...
I don't really know much about either concern. It's one of those situations where I'd figure the doc wasn't going to mess things up. I would imagine that having the probiotic wouldn't be an issue but I know very little about them.
I really don't know anything about Vidaza besides what I've read here. Again, I imagine the doc knows best on this one. I imagine it's best to try to get her stronger so that the cure doesn't wind up making things worse.
I'm glad the PT is helping. Keep us informed.
Well a lot has happened since my last post. Mom came down with aspiration pneumonia and had to go to the ER last Thursday evening. They admitted her to the hospital and we have gone up and down with reports of how her pneumonia was doing. Now they are saying she dodged a bullet. But while in hospital her ability to swallow has waxed and waned. She can swallow but sometimes will cough on water. They put a tube in her nose to feed her until she gets over her pneumonia. She doesn't have a fever. Her white blood count was only .3 when she was admitted. Now it is 2.28, which is higher than when she was diagnosed a little over a year ago. Her ANC is 1.9 and has not been that either since before she was diagnosed. I would worry that her white blood count may have come up because of the leukemia but wouldn't a high level of neutrophils (87%) indicate that these are good white blood cells? If it is your leukemia that makes your white blood cells go up, would the ANC go up with it?
I think your mom is probably generating a lot of good WBC, if not all good WBC. That's my guess anyway. If the cells are identifiable, they're not blasts.
Actually, for an 89 year-old woman, your mom is doing incredibly well. I think she's a poster girl for elderly leukemia.
I'm sorry she's got the pneumonia but it certainly seems she's more than holding her own at this point.
I was always dreading the day I would write this message. After 16 long months of battling AML, I lost my sweet Mom on October 5, 2012. She actually had been holding her on taking the Vidaza every 4 weeks, and when she passed, her blood counts were all still the same or even better than they had been. What started the decline was her ischemic stroke in June. It came out of nowhere. It even seemed like she was getting better. She even made it through the aspiration pneumonia. But in September it seemed like her body just started shutting down little by little. Even though we fought it, we finally brought in hospice the last week. It was so sad just sitting and waiting and watching her die right before my eyes. The last hours of her life I lay with her in her bed at home and was holding her when she breathed her last breath. I guess I ran out of answered prayers with happy endings. I fought for 16 months to keep her alive because she told us she wanted to live. I used every ounce of energy to maneuver through the bureaucratic medical system from the time she was diagnosed in June of 2011, through MD Anderson, and then through the chemo treatments, and lastly the stroke, with which we tried all kinds of rehab (at home though). We were able to keep her at home after the stroke and brought in 24/7 sitters to stay with her and my dad, who is 92, yet gets around very well. We had home health care for a long time. My sister and I stayed many nights and days at their house also after the stroke. I never did get a definitive answer on what she actually died of - doctors just kept saying her body was shutting down, and I could tell they wanted to write her off since she was 89. But she was my mom, and I loved her with all my heart and soul and would do it all over again. I miss her so much. We had a really close relationship. I appreciate all the times those of you who did gave me your advice, encouragement, and support throughout my mom's illness.
I'm sorry to learn of your mom's death. She put up one hell of a fight and I admire her. Sixteen months is a long time to live with the questions of AML and she did so valiantly. I do doubt the doctors wanted to write her off. There just comes a point where they can't do anything. I'd imagine that's a frustrating moment for a healer.
You have been a wonderful daughter to her. I imagine your sister has, as well. It certainly seems that way.
My mother went through a very long period of dying, too. I can sympathize with you and your family's pain,
Please remember we're always here if you have questions, need support, want to vent or simply want to check in and let us know how you're getting along.
I wish you healing.
I don't know much of anything about Vidaza. I doubt it has much to do with the stroke. That's usually a blood clot and too often the clot is a chunk of cholesterol, if I correctly understand how things work.
I can understand how this might be all the more difficult because of the time and attention you've devoted to her recently. I want to go ahead and mention something, hope you don't mind. Often in a situation like this the caregiver(s) can feel a real sense of relief and maybe a little joy when the patient dies. That usually leads to a feeling of guilt. I don't know if you're feeling anything like that but it's really okay and perfectly normal.
I hope you don't deal with this series of feeling but if you do, now you know.
I'm so sorry to hear of the loss of your mom. I'm not getting email notifications any more (I have no idea why), so I just saw your posting by accident.
You did everything possible to help your mom, and I think it was fantastic that she could be at home at the end of her life. She went through so much - as did you and your dad and your sister. I know you must miss your mom an awful lot, but do take comfort in the thought that she isn't having to battle leukemia and the after-effects of the stroke any more. If you do or did feel some relief at her passing, it is nothing to be ashamed of. You have not only to mourn your loss - and losing a parent is a very difficult thing - but you need to be there to comfort your dad. In a way, although you were so focused on trying to do the best for your mom you may not have realized it, you've been mourning the mom you knew for a long time.
I agree with Tex: I don't think Vidaza had anything to do with the stroke except in a tangential way. She might have had a stroke even if she never had contracted AML, but that certainly didn't help, as decreased activity, alterations in blood counts and chemistries can increase the risk of clots/clot migration and/or bleeds. (You don't say what KIND of stroke she had: they may be caused by a clot that migrates to the brain - usually from either the carotid arteries or from the heart - or from a bleed in the brain - but the latter is a higher risk of instant death..)
The body is very stressed by having to cope with the after-effects of a stroke, and when the person also has leukemia, the resources simply aren't there. A person who has been, to all appearances, in "normal" health prior to a stroke will expend a huge amount of energy during the recovery period. Someone with leukemia simply doesn't have the reserves, and when you combine that with old age it fully explains why your mom's body was shutting down.
My heart goes out to you and your family.
Karen and Tex.
I appreciate both your replies. Her stroke was caused by a blockage of some sort to the oxygen in an artery going to the brain.. They did a CT scan right before administering the TPA drug. Since she had very low cholesterol, they think she may have had an episode of atrial fib and threw a clot. But she really had not had a history of atrial fib. I can't help but wonder if the antibiotic Avelox that she had just started taking caused her heart to beat irregularly and caused the atrial fib. I have never liked that class of antibiotics. They have always given me and my dad both irregular heartbests. I think I realize what you are saying about her body not having the reserve to recover from the stroke. That makes the most sense of anything I could figure out. We all feel a relief that she is not suffering, but I still wish I could have brought both her and my dad to live at our house the last few months or even before so I could have given her even more care and attention, but they wanted to stay at their house with the sitters and home health care there, although I would have brought in both if they had come to my house too. As it was, I was driving back and forth about an hour and 40 minutes all the time, and we have a 14 year old daughter that was also needing me. But I don't think it is guilt I am feeling because I still wish she was here with me and I was taking care of her. And now even though I have always believed in God and an afterlife, I spend a lot of my time wondering what she is doing, if she is just a spirit or if she has a new body, and if she is with her family that went before her.
Warm regards to you both,
Older people have this thing about staying in their homes. I didn't get it but as I get older, it's easier to see their point. It often gets inconvenient for the kids but it allows the parents to live their lives with a dignity that matters to them. You did the right thing, though it was a pain in the butt for you. That's a good daughter.
I always figure I'll get to the afterlife soon enough and don't think much about it. Since my mom died a few years back, I do find myself wondering about her, though. Guess you're not alone on that one.
Anyway, don't spend time thinking about what didn't get done, so far as caring for her. I'm sure she felt loved and cared for in ways you and I wouldn't begin to understand. Think about that and smile.