questions about Vidaza AML — please help!

[riley]

This is long, but please bear with me and help me if you can. I’m so confused and frustrated right now, and I’m hoping someone here can help.

My father passed away in July. After nearly five months of placing phone calls to Dad’s doctor, we finally got him to call back last week and discuss my father’s autopsy with us. We were surprised to find out that Dad’s MDS had transformed to AML and that the doctor knew that — we were never told. The doctor’s only response was that they never intentionally would hide something like that from a patient.

I cared for my father fulltime for 19 months and took him to all of his appointments. The only times his blast counts were elevated was when he had an infection. Now the doctor is telling us that his blast counts were in the 30s-50s for at least the last month of his life. That is not what we were told then. In fact, I clearly remember a blast count of 2 in June because we were celebrating. I don’t know if we were given the wrong counts then, or if we’re hearing the wrong counts now.

On the day before my father went into the hospital for the last time, eight days before he passed away, the doctor talked with Dad about starting Vidaza. I’m confused as to why he was suggesting Vidaza treatment if he knew then that my father had AML. I was under the impression that Vidaza has only been approved for MDS and not AML. Has it been shown to work for AML too?

Also, I thought that once AML was diagnosed, a decision had to be made pretty quickly about treatment. My father (thinking he had MDS and was fairly stable) said he was feeling too good to want to start more treatment then, and asked if he and the doctor could talk about it in another couple of months. I asked the doctor if Dad had that kind of window of time to wait, and he said yes. If he knew Dad had AML, shouldn’t that answer have been no?

I’m feeling like the doctor took Dad’s decision away from him by not telling him he had progressed to AML, but I’m hoping that there’s something here I’m just misunderstanding. I know so many of you are very knowledgeable about this disease…please help me understand!

Thanks,
Nicole

[patti]

Nicole,

I can’t answer all of your questions but maybe one. We were told Vidaza could be used for AML but there are other drugs that are better because they are more powerful and when in the AML position a person needs the higher powered stuff. So, although Vidaza may have been an option, my thought is it wouldn’t have been the best option. Suzanne might be some help here since she did transform to AML.

I think a lot of your questions need to be addressed directly to your dad’s doctor. It sounds like someone really dropped the ball in this situation. Unfortunately, I think that’s all too common. And, who knows how honest the doctor will be with you? I hope for your family he would be very straight forward.

Sorry I can’t help too much with the other questions but I hope this helps a little bit.

Patti

[CarolineG]

Nicole.

I am very sorry that all of this is happening to you now. It is bad enough that you had to go through the awful ordeal in the first place and then lose your Dad in the end. And now to have to wonder just what was real and what was not real where the doctor was concerned. I hope that you are able to find the answers that you need to bring you peace.

I’m sorry Nicole.

Caroline

[Suzanne]

Nicole, I hope you can find some peace. From your signiture line it looks to me as if they had already tried the stronger, more effective “heavy chemo” that is what they often do for AML with your Dad. I know my docs only looked at complete remission for me and those 2 rounds your father had are pretty much what I had after I progressed to AML that put me into complete remission on the first round (that does not happen very often with REAB-T with chromosome changes). They told me that even if my chromosome change or any blasts remained they would not consider it remission at Hopkins although less then 5% was considered remission in many places. I also know that since they don’t know why different things work for different people they tend to move on and try different drugs when the disease progresses. One of my hemos’s said to me that they start with what is most likely to work for an individual and then move down the list of what is available if that does not work.At every step of my disease my Hemo was mentioning to me about the different possibilities-almost as if he was thinking out loud. I also think the Doc’s are always backed against a wall with the decision on whether to recommend trying something with a very low possibility of helping that has side effects or leave things alone and go supportive care-especially when they are also considering quality of life.

I also know that unless they have some kind of break through of knowledge about this disease, that if mine comes back there are very few alternatives and not much chance that anything will work. So if it does relapse the right answer for me may be to do nothing and enjoy what time I have. I know of quite a few patients that have relapsed and been gone in a short time. Not easy on caretakers but a comfort for me.(I am not lying awake at night worring about a long period of being uncomfortable) I am very glad that your Dad was feeling so good even as the disease was progressing and I think you took wonderful care of him.

Could the difference in the blast counts you are remembering be the difference between what was out in the blood-shown on a blood test-and what was in the bone marrow? When I progressed to AML the count in my marrow went up to 75%(and it moved very quickly from hovering at 19% for a long time) But when I asked they told me the % out in my blood had always been low.

Don’t know if this will help. I can only talk about what has happend for me and how I feel about it all. As far as I know there really are no right answers or right treatments with this disease. Everyone just makes the best decisions they can as they move through it.

[riley]

Patti, Caroline and Suzanne, thank you very much for your messages. I really appreciate your taking the time to posts your thoughts.

Patti, thanks for the info that Vidaza can be used for AML. Knowing that makes me feel better about why the doctor suggested it.

Suzanne, thank you for sharing what you did about heavy chemo. What you said makes sense, and putting it together with what Patti said answers one of my questions — since the heavy chemo hadn’t brought about a full remission, maybe the doctor was suggesting Vidaza as the next best choice.

When the doctor told us about the high blast counts (30s-50s) last week, he said those were the blood counts, and surprisingly, they were higher than what was in the bone marrow. He didn’t know why that would be, but there is so much about my father’s version of MDS that never fit the norm.

Suzanne (or anyone who wants to answer) — do you know if AML always progresses as quickly as yours did? I’m still trying to understand why the doctor would have told my father they could talk about treatment again in a couple of months. I think I need to call Dad’s doctor again to ask him more about this, so I can try to gain some peace of mind about it all.

Thank you again to all of you. This forum was such a blessing to me during my father’s illness, and it continues to be a blessing for me now. All of you are in my prayers.

Nicole

[Suzanne]

Nicole I don’t think the word “always” or even “often” can be used about any part of Mds or AML. Every person’s case seems to be very individual. As far as I know all they have is statistical odds as far as predicting anything. .

[kristyk]

Nicole
I just read your post from last week. I first want to tell you that I am sorry to hear that your Dad lost the fight and hope you are doing well.
What struck me about your post is that we faced a similar situation with my mom just a few weeks before she transformed into AML. Since her MDS diagnosis in 2/05, her primary oncologist had her consulting with the “big wig” doctor at the major center of excellence in our city about every 8 weeks. All along he said she would transform to AML at some point and he wanted to keep on the ready so she could partake in a clinical study for aml. So for months we went down every other month and every time her labs indicated that she wasn’t there yet. She continued with supportive care ocassionally and hydrea with her local doctor. I remember we went down for another consultation on 10-18-05, and again her labs were fairly steady, so the doctor said not to come back until Feb 06…she appeared to be holdng steady with MDS and feeling quite good.Still, she went weekly to the local doctor for labs as she has done since Feb 05. The next two weeks her labs were fine with her local doctor and then BAM..she took a swift nose dive and transformed into AML by the begining of November.The next time we met with the big wig doctor he came to her bedside as she was inpatient and fighting for her life. And I remember thinking how it had only been a few weeks back, only days really since we were in his office that he said to not to come back for four months. So I think in some cases it can happen that quickly. Fortunately for her, she has been able to recover from the aml crisis and is trying a treatment and is showing some improvement.
Again, sorry for your loss and your frustration. I struggle every day worrying that we are making the right decisions and that the doctors are all on the same page…good luck
Kristy

[riley]

Suzanne and Kristy, thank you for your posts.

Kristy, I’m very glad to hear that your mother’s health is improving! I think that my father’s MDS did progress rapidly, like your mother’s did. Looking back at my notes and lab reports from July, his counts from the week before his death were his “normal” MDS counts. Thanks for sharing your experience — it helps me to know that it really can transform that quickly. I thought I had stayed on top of everything for the 19 months of Dad’s illness, and I’ve been beating myself up thinking that I missed something I should have been able to see coming.

Nicole

[patti]

Nicole,

I think “beating yourself up” is not productive for your healing. I think that Kristy’s post says it so well about how fast this can come on. On the other hand, it sounds like from everyone’s experiences here that it is quite possible they really had done everything for your dad as they should and things just changed very quickly. I hope, for you, that you can find peace in all of this. You certainly are to be commended on caring for your father for so long. “Honour thy father and mother.” I think you can be confidant that you did just that in caring for him. Take care.

Best wishes,

Patti

[riley]

Patti,

Thanks for your kind words and for your pep talk. I know you’re right in what you’re saying, and I guess I just needed to be reminded that I did all I knew how to do at the time. Today is my birthday and it’s been a hard day for me, so thank you again for your kind message.

Nicole

[patti]

Happy birthday, Nicole! I wish you a healthy, happy, restful and peaceful of heart New Year! Give yourself time – lots of it. It’s hard losing a parent, especially one that you’ve cared for very lovingly for a long time. Try as much as you can you get yourself into a normal routine so that when the sad days come the normalness will keep you going when you just don’t feel like going. And time will heal….

Sincerely,

Patti

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