My hematologist-oncologist gave me the M5 subtype today, with BMB lab report showing 41% leukemic myeloblasts. The report cites "Final interpretation requires clinical, morpholgic and cytogenetic/molecular (currently pending) correlation." Does this mean we are still waiting for a report on chromosomal abnormalities? I was told the induction protocol for AML has been and will pretty much the same based on what's already in the lab report.
I'll be treated at Stanford's Cancer Institute. It's late Tues. and my appointment with the hematologist there isn't until Fri. But here I go!
I also expect to be contacted by a clinical research coordinator. Didn't expect to get info about clinical studies this readily (also at my age- 64). I used to work at a biotech company. But are now looking a trials with a very personal stake.
They can often figure most of the AML and subtype stuff out while waiting on the cytogenics report. They cyto report might offer a few adjustments but you're right, there is a standard AML protocol that works pretty well. If you're going to a teaching/research hospital, they might want to ask you to guinea pig for them. I'm not sure what they'd want to try out on you. But it's fun to be contributing to the knowledge base. Maybe I should say "rewarding."
What I'm surprised about is that you're still running free. They usually put us under lock and key as soon as we get the dx. I was checked in on Wednesday night, had my BMB on Thursday, got my dx on Friday morning and had my Hickman catheter installed on Friday afternoon. I didn't start chemo until Monday as they didn't want to get me started and turn me over to the weekend crew. But I was in the joint the entire time.
This ain't going to be easy but it's something that many of us have navigated successfully. Plan on being better soon.
Thanks much again, Tex.
Yes, I've seen more posts here about admission the day after DX. So did press why not earlier.
The trial there that seems to fit me, age and otherwise is for Clofarabine (FDA approved for pediatric ALL) with Cytarabine and G-CSF for new Dx AML. I read reports of the same combo trials from Hutchinson and Anderson trials. Some positive results, some not. Willing to add to research, but will be asking what risks to me or treatment benefits compared to standard AML protocol.
Reading trial results also made me face a lot more coldly some of the stats for AML. You other posts on stats and what I've read elsewhere (Stephen Jay Gould) have helped me get my mind into them in a better way.
Glad I could help but the point I try to make about survival stats is that they say nothing about you. You are your own study. On the other hand, I think stats about treatment options are pretty important.
The trial seems to use some fairly common meds. I guess it's adding them together in this mixture and leaving the Rubicin sisters (Dauana and Ida) on the shelf. The bottom line is that it should work and I hope it does.
Please keep us posted on how you're doing and what you decide to do.
After the consult with the hematologist and the cancer center a few days ago, I'll be doing a standard 7+3 induction for my AML. The clinical study I had been focusing on, recently lowered it's top age limit from 65 to 60, which eliminated me. Will be admitted to the hospital tomorrow. And had begun on oral Hydroxyurea in the meantime.
Just wanted to pop in and wish you well with your upcoming treatment. I'm another M-5er, diagnosed in early November of 2008. I presented with 68% blasts and had the standard 3+7 induction regimen followed by 4 consolidation treatments with HiDAC (high-dose cytarabine). I was 49 when diagnosed. Just wanted to let you know it can be done. Stay determined to kick this beast back to hell where it came from!
Since you seem to be the sort who likes to know what he's dealing with, I thought I'd give you a link to a LLS presentation that is currently about 2 years old, but still contains good information for those just venturing down the AML path. Let us know what your cytogenetics are when you get the results back from the docs...until then, hunker down, keep putting one foot in front of the other, stay as active as you can, and report any symptoms you have (no matter how insignificant they seem to you) to the docs and nurses. Hope your induction is uneventful and remember - when you're in the hospital, boring is good!
Good the hear from you WBF. Have followed your other posts.
That presentation plainly addressed where I was coming from on trials, and fleshes out other risks like age that I looked at differently. Still waiting to hear about cytogenetics.
Met and talked with my treating physician about therapy plan and clinical trials a few days ago. Had been reading about dozens of AML trials both recruiting and reported in the days before. From my own online research, I on to the possibility of a trial (with HiDAC and another new combination) based in Hutchinson and that my treating doc was a key participant in. But the top age that was shown on the online sources had been reduced recently and my age is above the cut-off
One of the team of doctors told of normal karotypes, but I slumped, shaking my head when I was told of FLT3. I cope with my fears by wanting to learn more before I hear the undeniable bad news. But then get a bit angry as small things at small things at the hospital are unexpected or that I don't like But a relative-doctor, is trying to balance me out on this, to lower my stress levels.
I'll try to remember to not shrug off symptoms.
I started treatment yesterday. It is the clinical trial I explained earlier. My doctor verified that I qualified, following additional discussions, I agreed to it instead of standard 7+3 induction. Today is day 1 of induction and it continues for a total of 5 day. The journey continues.
Completed my chemo cycle on feb 25. The preliminary report today from my day 14 BMB shows "no leukemia cells detected".
With chemo I've had no problem with nausea,vomiting or appetite. I did have an inordinate retention of fluids, a known possibility with clofarabine.it got the point of fluid around my lung, giving me shortness of breath. At the same time I had a high rate Iv saline to get my kidneys to function better. I'm closer to normal after a week of that.
Fever starting kicking in on day 12 and gotten high and has gone down and up. Unclear if the 2 antibiotics , which each have a distinct array diseases treated, are working, so an anti-fungal med is being added.
Temps around normal now so I am more up to communicating.
Sounds like you're doing pretty well; better than I did, anyway. So, that's pretty good.
I had the whole high fever thing that yo-yo'd a bit. They never did figure out what was up with it but they gave me a mess of treatment, as well.
So, keep on keeping on. The not-so-good stuff will pass. Keep us posted.
Thanks WBF. I was discharged from the hospital 6 days ago and am awaiting results from BMB taken yesterday.
However, my discharge seemed abrupt and was a frustrating process.. I had gained in fluid retention about 40 lbs as a side-effect of clorafarabine. My legs were leaden, fluid around the lungs gave me shortness of breadth, but because of kidney abnormalities, the docs were cautious and measured about my taking diuretics to pull off the fluids. I ran fevers for about 2 weeks. No cause was found. I was pulled off the various antibiotics and antifungals. The docs later concluded that my neutrophils came back with an "overexuberance" , causing the apparent fevers, when no infections could be identified. My clinical trial chemo included daily injections of Neupogen and the apparent overexuberance (my WBC went from >.1 after 10 days to pretty high before they settled down).
The first day, in 2 weeks, I was without fevers, I was told somewhat abruptly that I'd be discharged later in the day. I felt weaker than I had been 2 1/2 weeks earlier, I was still plus 25 lbs with fluid retention and the related mobility and shortness of breath problems. Glad to be out after 4 weeks but my wife and I didn't feel ready. We live 1- 1/2 hours from the hospital. My wife had spent many either in my room or with friends and relatives who live near the hospital.
It's been frustrating at home the past week with fatigue and fluid retention. But I'm seeing some progress most days. And finally better able to concentrate and motivated to get back online.
Hi, I am new to this board but have been reading everyone's posts and have learned so much, and have appreciated it. Some background: I am 49 and was diagnosed with AML Nov 2011. I have mixed cytogenics, t (3,11) and following the chemo route for now. I have finished my 3rd consolidation and have been hospitalized after each one with neutropenic fever. I just got released today . I am glad you are feeling better. Going home not feeling ready, especially with 40# extra pounds of fluid and being so far away from the hospital would be very intimidating. AML comes on so fast and treatment starts so suddenly, that it is hard to mentally digest it all. The most important factor so far for me is having a point of contact who I feel I can call with any concerns. Sounds like things are getting better and I am so glad to hear it. I have been amazed by the strength and determination I have read in other's journeys. It really helps to know you are not alone. Keep up the good fight! I will be pulling for you!
Welcome to the club nobody wanted to join. It sounds like you're about 3 years behind me - on March 28th it will be 3 years since I finished treatment. Since my local oncologist starts counting remission as of the end of treatment, that translates to 3 years officially in remission.
Was this your last consolidation, or are they planning another one for you? Lay low, be careful, and I hope you get through this one without having to return to the joint because of fevers or other stuff you'd rather avoid. I found those around me tended to get a little more casual about the whole neutropenic protocol as I progressed through treatment, and I had to be the one to insist those rules were followed strictly for each and every treatment.
I have one more consolidation round to go, I due to start April 5th. My MD plans a bone marrow biopsy prior to the start of the 4th dose. My last biopsy was in February and was clean! I had hoped to talk him out the last round but he gives me that "look", and says "it is protocol". It is a "protocol" that I really did not want from start to ........oh well. It is fantastic to hear you are 3 years out, congratulations! I do agree it is harder and harder for family and friends to understand that the rules during induction need to be followed after each consolidation. It is good to start to see the light at the end of the tunnel and God-willing I will stay in remission.
Yikes, that's some serious fluid retention. I remember chiding my doc that it was NOT ok to make a woman gain 10 lbs overnight! I did find that the water weight dropped off fairly quickly after I was home and off the IV fluids, so I hope it works the same for you.
As my consolidation treatments went on I began to notice that the first few days I was home I invariably felt irritable and agitated - it took me a while to link it up with coming off the steroids that were part of treatment. Once I began to see to connection, it made me feel slightly less like throwing myself on the floor and having a small tantrum. So you may be experiencing something similar. Just a thought.
They never found any cause for my fevers after induction, either. They always treat them in case something is brewing, but oftentimes its simply a result of being neutropenic and they usually resolve once the counts recover.
Getting out of the hospital after you've been in there for a while is a surreal experience. Leaving the security of having medical help close at hand and frequent monitoring feels a bit like someone letting go of your hand in the middle of a busy street. However, with reasonable precautions you should actually be ok at home, and isn't it great to spend a night not being poked and prodded at all hours? Just be patient while your body recovers from being hit with a wrecking ball. We all come out of this feeling like we've been pulled through a knothole sideways, and it takes time to get over it.
I hope your BMB comes back showing the AML has been evicted!
I'm sorry you're not feeling good about being home. Or that you're frustrated by the experience, at any rate. I'm thinking it might not be a bad place to be while you're finishing up getting rid of your side effects. Still, I can understand the anxiety being so far from the hospital could cause. How's that for a completely non-committal response?
I do think a lot of discharges seem abrupt but I kind of like them not holding out a prize they can't deliver on. So many people have been turned around at the door of the hospital and re-admitted, it just doesn't seem all that fair. Both of my discharges were announced with a "I think we'll send you home today" from my doc. Of course, after being there as long as I was, I wasn't going to argue.
Anyway, it does look like you're making improvement and that's pretty good. I hope things get even better soon.
Thanks for your thoughts.
My induction and first consolidation included clofarabine, hi-dose cytarabine and continuous shots of of neupogen throughout as part of a clinical study. My doc reported a very good CR from the first induction. I continued the first consolidation out-patient. But I had an adverse effect , "capillary leak", from the most "novel" med, clofarabine, a 1/100 side-effect which could become more serious. The clofarabine also induced a-fib the next chemo infusion, an adverse effect with some relation to the capillary leak. A heart arrythmia with no prior personal or family history. It took strong counter measures over a few days to treat these. And they were treatable.
Throughout all this symptom, I really took your advice to report each of these as soon as I had the sense that things were not right. I had no such symptoms from the same chemo during induction . It was just an unexpected weakness and something else when I got up and about.
I'm heading into a 2nd consolidation in a few days. But under a simpler chemo protocol somce I did not react well to one of the chemos in the clinical trial and have discontinued the trial. A transplant has been part of my initial treatment plan. A 9 of 10 match was identified a few days ago. My consolidation is now more aimed at keeping me in CR, without throwing in new unknowns for me as far as different chemos, so as to move into a transplant regimen.
I've got normal cytogenetics but with the FLT3IDT higher risk abnormality which may explain why transplant was recommended in my first AML . I've also got the CEPBA double mutation which has been reported as a more favorable abnormality.
I had no idea clofarabine could do that. I had it with my second induction. Now I have a heart murmur that had never been detected before. Makes one wonder.
I'm glad your symptoms and conditions were treatable. I do hope the rest of your treatment goes more smoothly.
I had 1 9/10 MUD back in '04. I think those mismatches work out pretty well.
The disclosures I received with the clinical study about clofarabine, cited "rare" cases of irregular heart beats. From my vantage point, I could see my monitor jumping up and down from 80 to 150 beat per min., moments later. My sytolics and diastolics were pretty low too. IV's then pills got my heart back to a steady beat in less that a day and I was discharged. When I was hospitalized a week later for bacterial infections and asked the doc about low BP readings at times, he stressed that this low BP symptom would be unrelated to the onset of a-fib the week before. That the earlier a-fib was then induced by the clofarabine (given a few hours before and for 4 days). A month after the Clofar infusion I'm still taking the oral med that helped get the heart rate to normalize. So I've got a bit of unknowns about how this is works or is being treated.
I heard today that I have a 2nd 9 of10 MUD identified. And targeting early July for transplant if contingencies work out. So I'll be shifting to the transplant forum.
Tex, I've seen your other posts on how your mismatches have worked out for you. Its encouraging to know.
Great news about the positive matches, best wishes to you as you head toward transplant. Be sure to ask your MD about the medication you are taking to control your heart rate, it might be the reason you have had some low BP readings. Take care and I hope you are feeling stronger.
That's great news about the potential donors, and that you won't need to endure any more clorbarabine. My impression from reading the ancedotes on this board is that it's a pretty stout treatment, although I've never heard of anyone having the side effects you experienced. Hopefully that's behind you now.
Stay as active as you can muster so you go into transplant as ready to play your "A" game as you can possibly be. Oh, and one more thing: there's no need to be creative with your side effects! Settle down and quit giving us all heart palpitations.
Best wishes, keep us posted.