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Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.

jamielynn Registered Users
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Hello! Some of you have already interacted with me and know where we are at so far, but many don't and it was suggested by a member to post here since there aren't many in here.

 

My name is Jamie and my partner Maria was officially diagnosed Oct. 22 2010, at the age of 34, with pre-B ALL. She is ph- and negative for leukemia in the spinal fluid and brain too. The beginning of all of this was a bit chaotic and I won't get into it here, but if you see my post under waiting for diagnosis titled partner semi- diagnosed, you can read about the road that lead us to MD Anderson in Houston and to her diagnosis.

 

The only symptom Maria shows of Leukemia is anemia...say that 10x fast, lol. Her white blood cell count and platelets have been normal. (until she started chemo this week, now they are low) The Dr said by her blood tests alone you couldn't tell she was sick. Her red blood cell count and hemoglobin were the low numbers which caused her to have a pretty heavy case of anemia. The number of blast in her bone marrow biopsy was 69%, so I guess they caught it relatively early? I don't know it really matters but yeah...

 

They are treating her with the pediatric protocol. This week she had Daunorubicin, Vincristine, and Aspargase as parts of her chemo. Each medicine took about 30 minutes and that was all. She is on a steroid called Prednisone, anti-biotics, anti-fungal medication, pepcid, something for nausea and vomiting, and she has type 2 diabetes so she is on Metformin. Now the Prednisone is causing some real issues with her blood sugar spiking high. It's been averaging anywhere from 270-320 spiking at the highest of 375. This is a concern of course because it can cause issues with organs, especially the pancreas. They are giving her a whopping 2000mg of Metformin, AND she is having to get insulin shots. So that stinks because before the Prednisone she was on 1000 mg of Metformin and her sugar stayed at 160 and lower and she was eating much worse for you food then she is here! It's temporary but still.

 

The only reactions she has had this week is a couple of hours a day her cheeks get really flushed from the steroid but it does go away and she has had minor constipation....I know tmi, but it's so people have an idea of what to expect or what can happen. Today she has been real tired, but before today she has been pretty good and has gotten up and taken quit a walk with me around this gigantic place.

They are thinking of discharging her tomorrow and have told us that we need to stay in the Houston area for at lease 2 weeks which is difficult because we live 3 hours away in Austin. It's also a bit annoying because they want to see her at 8 am Monday morning and I think Tuesday so we are going to talk to the Dr. in the am and see if she can stay until Monday when her appointments are done otherwise it's just too exhausting!

 

She has a picc line in her arm. The procedure for that was far less horrible then I drummed it up in my head to be. She said the only pain was the 2 or 3 pokes they had to do but otherwise nothing and they let me be in the room with her for that.  The picc line is a catheter that they put in her arm above the bend and it runs up through her chest near the heart. This is so the chemo can go near the heart where the chemo is then, I guess diluted is what the doctor said and distributed. They also have catheters that can be inserted in the groan or chest. The picc line is a blessing as it eliminates her being poked repeatedly for labs and treatments, etc. As her caretaker I had to attend 2 one hour long classes to learn how to take care of her line. Care includes learning to flush the line daily to prevent clotting, changing the caps weekly and the dressing weekly. After attending the two classes I had to perform all three things infront of a professional transfusion therapy nurse who could check off that I knew how to properly care for it and would then give me the supplies to do so.

 

What else...

 

I guess if you are just starting out, the only thing I know as we are just starting out too...is to try your best to get all of your ducks in a row, try to have someone who can be there with you and help do all of your running, because there is LOTS to do! If someone tells you that you'll need certain documents for anything you might apply for, ask them to write down EVERYTHING you need to get because I went from having to get 3 documents to 5 documents to 10 documents...not fun and alot of extra running. I would get a binder with separaters to help you stay organized as you will get a ton of business cards, medicine printouts, information printouts, lab reports, the list is a mile long. Have a notebook handy so you can write down any questions you might have and not forget them and also write down the answers. Don't be afraid to ask questions, and to keep asking until you understand the answers. You and the medical team have a responsibility to make sure you are informed and comfortable because this is literally your life that is being handled. Be aware of hidden expenses...especially if you are traveling a bit to get treatment.... here at MD I am paying about $70 for 7 days of parking. Maria eats for "free", I don't. If you are lodging after getting discharged like we have to for awhile, you again have gas, food, cleaning supplies to help keep the room more sanitary, personal supplies, laundry. Medicine co-pays, etc. This can be beyond stressful and daunting, but you have to try hard not to let it get the best of you. There is help out there for financial issues, although I won't lie, it's a process to get that help...a tough one. And if financially you are in a bad spot as we are, try to remember it is a temporary set back, money comes and goes and it will all be fine eventually. The most important thing is to get well.

 

So many questions cross my mind..what will the outcome be? Will she relapse and how many times? What happens if she does? Will she have to have a stem cell transplant no matter what? How do I keep her from getting sick or getting an infection? What will life be like after ALL? And the list goes on and on and on. And you can research, ask questions, read things online, ask doctors, but you know what, I think some things that aren't critical to caring for her now, are better left unasked, and left alone and the reason why is that you can read a lot of things and either get your hopes up, OR become completely devastated and automatically start thinking the worst. But the thing is...your individual case is unique! Sure a doctor can tell you statistically maybe, what lies ahead. But thats ALL he can tell you! And you aren't a statistic yet! A doctor can say 1 out of 5 American's will get type 2 diabetes this year. We are all at risk then, but until next year when you get tested again, you won't know if you are the 1 that gets it or if you are one of the 4 who doesn't, so why worry about what can't indefinitely be known? You will have ups and downs and be on the longest roller coaster ride I assume! I have been the last 3 weeks and I'm just getting started. And finally for tonight, THIS board is a GREAT place to come and ask questions, vent, share stories, get support, and help you through a hard time in life.

 

This is the beginning of our story/journey and I'm signing off for now!

 

  • 1. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    Jarhead Registered Users
    Currently Being Moderated

    Hi Jamielynn

     

    Sorry to hear about your partner, but you are in the best place...this story is all too familiar.  I too live in Austin and was treated for pre-b ALL, mine was ph+, at MDAnderson.  I was diagnosed 1 week after my wedding last year on May 28th.  My WBC was 186,000..that was a dead give-a-way .  I am currently 1.5 years in remission and am in maintanence phase (didnt do the BMT), just got my latest PCR and FISH results and both still are coming back negative .  Are you on the Hyper Cvad dasatinib protocol?  PLEASE feel free to email me (Larry_Wilson@dell.com) any questions you have regarding MDA or the process, my wife and i became very profficent with the ins and outs (since we had so much spare time to study it all )

     

    Take care and God bless

     

    larry

  • 2. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    tmeeks39275 Registered Users
    Currently Being Moderated

    Good Morning Jamielynn from Florida

     

    Those first few days in the hospital are all too familiar. My son Michael who is 17 years was DX on July 1 and we spent 12 days in St. Pete. The care Maria is receiving I'm sure is top notch and as a new caregiver all I can say is patience, patience, patience.  You will learn what each of the numbers mean and the lingo will begin to make sense.  I was positively horrified when I learned about Michael's diagnosis. I gave myself 24 hours to think the "what if's" and then moved onto when he is better. We never admitted or talk about anything other than his future. We all know what could happen, but we are too stubborn to let it happen.  It is wonderful news about no cells in her spinal fluid. Michael had some and will be receiving cranial radiation.  Michael, is now in the week four of the Interim Maint. portion and is doing really well.  He is attending school 85% of the time and when he misses it is only because he is at treatment.  The doctors are contributing his great reaction to the drugs to a very positive attitude and trying to do the same day to day things that he did prior to DX. He jokes with his friends about his situation which opens doors for his friends to ask questions and he talks more freely about everything going on. When Michael goes in for a blood transfusion he says it is an oil change and when he is having a brain fog moment he is chemo brained. Everyone was asking him Friday what was he dressed up for the school's Halloween and he said a cancer patient. He lifted his wrist and showed his blood band and clinic wrist band. The kids are little shocked, but when he laughs it off they laugh and it is okay. Michael pushes himself as much as he can and it really shows.  If I could forward what I've learned is for Maria to move around and walk or exercise when she feels up to it.  If Maria feels up to it just walking around the halls of the hospital will bring positive results.  Michael responded so well he was in remission before we left the hospital. With that great response came dialysis and he was flat on his back for 7 days. Those 7 days he loss a lot of muscle and is now trying to gain it back. Actually, this morning I was cutting his hair. Yes most people have lost hair by this stage. His has thinned but it was actually growing and was doing the shaggy scruffy look so he got a trim. I would love to hear her progress so keep up the posts.

  • 3. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    jamielynn Registered Users
    Currently Being Moderated

    Hi Larry, thanks for posting! It really gives hope. So glad to hear you are doing well and a load of prayers and well wishes go out to you for continued wellness and prayfully without having to ever have transplants...that scares me. I bet that wasn't exactly the kind of wedding gift you wanted though huh? Yikes.

     

    She is on a pediatric protocol ...umm I can't remember what he called it... I have that paper at my apartment in Austin..good place for it huh? LOL We left a lot of papers there thinking we would be returning there this weekend but the have insisted we stay in the area as long as possible and gave us a free 5 night hotel stay at Econo Lodge. She was discharged this afternoon and she has been at the hotel since...I have been running around like a wild woman get things we need for our stay and doing laundry. We go back tomorrow at 7:30am...yay!....and she will see the diabetes nurse, get labs done, get another spine tap done, and a shot in the spine of chemo..I guess as precaution? Then Wednesday she goes for more labs and to see the Dr. No other treatment until the 8th of November.

     

    Austin is so beautiful. I am so in love with Austin/San Antonio area. Next to the ocean, it's one of the most serene places. You have the wonderful city life, so much history and culture and then on the outside is all of the beautiful trees, hills, lakes, river, etc. LOVE IT!

     

    MD Anderson... I don't know how I feel about that place. LOL It's nuts.  But I will keep in touch and keep your email and mine is on my profile too but it's dream_chaser85@yahoo.com.

  • 4. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    jamielynn Registered Users
    Currently Being Moderated

    Hello tmeeks...

     

    I am glad your son is doing so well I'm curious as to why you had to spend 12 days in the hospital? Maybe they just have different protocols there.

     

    Patience is something I am NOT equipped with. LOL So patience for me on a good day is probably most people's normal. I know it's something I have to work on and especially now, but...it's a long stretch for me. I have no patience for the social worker there. She is a joke to me and doesn't do a thing. And the woman who is I guess ultimately responsible for the financial aide program they have for MD Anderson bill assistance, needs to retire! And the nurse we had this morning also needs to take a course on bedside manner or find a different field. Other then those 3, the staff has been nice, friendly, and caring. My favorite nurse was the one we had the last two days.

     

    I only know what the numbers mean for platelets, hemoglobin, red, white, and neutrophils. Everything else is greek to me. There is SO much information to know, so much to remember and it's funny that you said your son says he has chemo brain, I feel like out of Maria and I am the one that has a severe case of brain fog. I can be full force into a conversation, or typing something, and if I pause for a second I lose my entire train of thought and it takes a long while to get it back LOL.

     

    Maria I noticed, doesn't want to talk about it either...and that is ok with me but makes it a little awkward at times when it comes to keeping her family informed. For example, and I would actually like to hear your input on this since you said your son went on as before his diagnoses with life...the Dr's here are saying not to be around many people and to try and stay away from kids especially...and well her sister was talking about coming here to visit this next weekend. At first it was only supposed to be here sister and her dad but know it's her three kids and possibly husband as well. The kids are 2, 4, and 14. And the little ones are always sniffly so that worries me. I just don't think it's a good idea yet and have been told by a mutual friend who worked in an Oncology office for years as the medical secretary, that it wasn't. So I think I will ask the doctor directly when we see him Wednesday, but I know it's going to frustrate Maria as she is bored and feels a little lonely because I have been doing all the running...this should be less now but still. I just don't want her to risk it, especially in flu season, until she is given the ok and has gotten into this a bit more.

     

    I am already scared about getting sick myself and need to get the flu shot...I usually only get sick once a year and just got sick in August so...if I'm lucky that will be it.

     

    And it's funny that when your son was asked what he was going to be for Halloween he said a cancer patient, that is what Maria told everyone today.

     

    What caused dialysis? I guess I don't fully know what that is!

     

    Also, and this is something I will ask the Dr. Wed., her spine came back clear but on her chemo schedule that they printed, there was a comment box and it said there was IT=rare atypical cells. I don't understand what that means. I don't get if that's the leukemia from the bone marrow? Something from her spine tap? I asked her impatient Dr. and the nurse, the Dr said it wasn't leukemic but that's all he said and the nurse said she had no idea and to ask her primary Oncologist. So that makes me a little nervous. But they all seemed content and happy with how she is doing and where she is at as of now...so I am hoping that's a good thing.

  • 5. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    jamielynn Registered Users
    Currently Being Moderated

    One more thing on patience, or lack of for me. The MOST frustrating thing for me, and I am going to throw a fit if they don't fix it...all of her out patient appointments for the next month are insane! They have her doing labs at 7 am and then NOTHING until 1 or 3 in the afternoon! What the hey do they expect of people? Like they have nothing better to do then sit around the hospital? Nothing better to spend parking money on? And extra energy to make a full day of it when it ISN'T necessary!?? I just saw this schedule so I am pretty ticked off. Lab results do NOT take 6-7 hours to get back, that is one thing I do know! Grrrrrrrrrrrrrrrr

  • 6. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    Fontenrose Registered Users
    Currently Being Moderated

    That's great that Maria is out of the hospital on schedule!

     

    How long has she been diabetic?

     

    Her doctor will probably want the kids kept away if Maria's ANC is below 0.500 (500) and I'd keep them away in any case.  Her ANC can take sudden dips that you won't know about. My son's ANC was fine for Thanksgiving the first year of treatment, but I cancelled our dinner anyway. Then on the Tuesday we went to the clinic and his ANC was almost zero.

     

    The steroids in induction can make a person look a little puffy ("moonfaced") and this can be a bit upsetting. It is temporary though.Just to warn you in advance.

     

    I don't remember much of induction it was all a blur.  I was afraid that I would have a car accident or something, because of the stress.

  • 7. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    Fontenrose Registered Users
    Currently Being Moderated

    I'm not sure about the atypical cells, but the reports do say that sometimes. I think the chemo makes some of the new blood cells come out wonky (to use the scientific term ).

     

    Now you have to learn that waiting is good. Repeat after me... waiting is good. Waiting means that Maria's life is not in danger.  If you suddenly start getting immediate priority then something bad is happening.

     

    Maria has been released from hospital, so now you are going to spend a lot of time going back and forth. Check into a monthly parking pass at the hospital. With a bit of luck you will only need one.

  • 8. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    jamielynn Registered Users
    Currently Being Moderated

    Well 2 years ago she went to the hospital with severe back pain..it knocked the breath out of her and they said then that she was borderline...like on the very edge of becoming diabetic. So you know she went home straight away and started exercising, cut out all sugars and ate a healthy diet..... NOT! LOL We should have! But we didn't. She was technically diagnosed in February but didn't start taking care of it until August.

     

    I know too much about the effects steroids can have....well I didn't know about the blood sugar surge but the puffy face. I am very allergic to them! Not a good time especially when you're a tween. LOL

     

    So when you say the reports sometimes say atypical cells does that mean you have seen a report with that too??? Maybe we aren't having some issue? I hope...

     

    The only parking pass type thing MD has is some coin thing and it saves you maybe $10 a week which is great! But still not enough.  And I know that waiting is...hard swallow....good...oh that was bitter!...lol....but I don't have tolerance for the scheduling they are doing..it doesn't make since and adds anxiety, stress and takes away much needed energy.... so I will talk to some people and see what I can work out. I just don't want her there ALL day, when she's only technically needed for half.

  • 9. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    Jarhead Registered Users
    Currently Being Moderated

    on a side note....when you get back to Austin, let me know...i can recommend you a FANTASTIC local oncologist...she rocks!

  • 10. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    tmeeks39275 Registered Users
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    Good Morning Jamielynn,

     

    Sorry for the delayed response.  You asked why Michael was in the hospital for 12 days. Well we were admitted on Thursday July 1 and by Friday, July 2 afternoon had already had surgery for his port, his spinal done with chemo, bone marrow biopsy, and two other chemo treatments.  This was along with 4 units of blood, platelets, and lots of hydration.  WIth all that coming at him in less than 24 hours, his body went from 116K in white cells to 1K two days later and his kidneys couldn't flush out the bad stuff quick enough.  So on day 4 they had to insert a catheter into the major artery in his groin area to hook him up the kidney dialysis machine which ran for a solid 7 days until his kidneys could do their job.  Day 12 was observation on how his kidneys were doing and follow his counts.

     

    I'm sorry about the staff issue. I have  few of those but overlook them because their are more good ones than bad.  The patience thing is extremely hard for me to. I'm a very black and white person and there are so many versions of grey that I literally drove the nurse nuts with questions. Learning the patience things is getting easier for me but I still have a tendency to loose it when I have an appt at 11:00 and they don't do anything until 3:30. I feel your pain on the set an appointment and don't do anything for 4 hours.  That only happens 2 out of 10 times so I just bite my lip and try to put a smile on.  Michael knows I'm mad and he just says don't piss them off or they take more joy in stabbing him during his shots. I know they don't but that makes me smile and I settle down.

     

    As for Michael and his exposure to illness. He carries around hand sanitizer in his pocket and says that he continues to use it.  His ANC's haven't dropped below 400 but if I see the slightest sign of sneezing or sniffles I break out the vitamin C, airbourne, and lysol.  I have two other teenages and they bring home stuff also. We kind of segregate them on the other side of the room and follow them around with santizer of some sort. I haven't kept Michael home yet because of my fears because his positive attitude and interactivity with his peers is far outwaying my fears of him getting sick.  I have told him that if he doesn't take the precautions of washing his hands and using the sanitizers I bought and he gets sick he could wind up in the hospital. That is his last wish so I think he is trying. He has also told his friends that if you are sick, coughing, or sniffling, don't come near me.  They have respected his request.  Marie seeing family and friends will help her. If at a last resort have her wear a face mask if you fear the little ones of being sick.  That is a compromise of seeing them but removing some of the threat of sickness.  I hope this helps and things will become a little easier.  The last 4 months have been one day at a time for us.  

  • 11. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    Fontenrose Registered Users
    Currently Being Moderated

    Yes, I've seen blood reports that mention atypical blood cells. I forget whom I asked about it, but it didn't seem like a worry.

  • 12. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    jamielynn Registered Users
    Currently Being Moderated

    thanks! She started with Dr. Uyeki...idk if I spelled it right...out of Kyle. She got him when she went to Seton Hospital...the staff there is phenomenal! But of course that's not a cancer center.

  • 13. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    jamielynn Registered Users
    Currently Being Moderated

    Hello tmeeks...

     

    So he has the port in his chest then? That's what the Oncologist in Kyle (near Austin) told us he thought she would get but they just gave her the cvc or picc line in the arm....made me mad today as we went for labs and they poked her! Are they supposed to do that? I'm going to ask the Dr. Wed. I mean it's not a huge deal but it's irritating when I KNOW they can draw from the line as that's all they used when she was impatient.

     

    So everything happen real quick for you.....bet the kidney thing was nerve racking huh?

     

    And I bet you are super proud for all he has come through.

     

    So with him not wearing masks and being around people...you haven't had any real issue with that? I still want to ask the Dr., but I don't want to keep her away from her family either...I feel very conflicted because everyone warns me to keep her away for now and then I also realize that it would help her keep her spirit up and maybe feel "normal" a bit...well unless she wears a mask it'll probably upset her greatly. We took the shuttle to the hospital today and it was crammed and she refused to put the mask on...I told her I would wear one with her as I can't get sick either right now! But she still wouldn't..so I got a little mad about it and told the nurse on her...lol....I know I am mean....and the nurse told her in a nicer but matter of fact way that she needed to take the proper precautions around people, especially a group in a small area like a shuttle van. So we will see.. she is the most stubborn person I have ever met, next to myself!

     

    Thanks for your response!

  • 14. Re: Maria's Journey with Adult pre-b ALL ph-. A place for updates, questions, etc.
    jamielynn Registered Users
    Currently Being Moderated

    Frosten, she went and had another spine tap thing today as well as chemo and I asked the nurse who did the procedure what that meant and she said it isn't leukemic but that it means there is rare..meaning few....atypical...abnormal cells and by that (because that part is obvious)..... could mean like the white blood cell isn't matured or something, they don't exactly know but will keep looking at it...but that there definitely are no blasts like you find with leukemia. She also didn't sound concerned, but I will bring it up again to the Dr. Wed.

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