AML

[SusanJ]

Has anyone of you or your family members MDS progressed to leukemia? My 73-year-old dad was diagnosed with MDS in January 06 and he just had his second bone marrow biopsy this morning. He has been getting shots of Aranesp every 2 weeks and had his first blood transfusion last week. I am so afraid that he has progressed to leukemia. I do not want to hear a prognosis, I don’t think I can bear it. I was just wondering if any of you have leukemia and how long it can be treated? I pray for all of you daily.

Susan

[lynette]

Hi Susan
My Mom was dx w/ MDS in Aug. 05. She had 19% blasts at that time. By Oct. 05, she had progressed to AML with 40% blasts in bone marrow. However, take heart. She received treatment, a phase II clinical trial at NYP in NYC. She is now in remission. The results of the trial have been very encouraging. She receives maintenance medication every 4 weeks. Although during that week she feels very ill, during the rest of the time, she is well. I truly have to remind myself that she has AML. Of course, we do not know how long the remission will last–but we are thankful for everyday that she is in remission.
There are more treatments available for patients over 70. In fact, many of the newer treatments are designed for the elderly. Take your Dad to a Center of Excellence if he is not at one presently. They will have the best options for him!
Good Luck and God Bless you.
Lynettte

[Suzanne]

I second that-the break for me came only after I progressed to AML and had the full chemo treatments that put me into remission. I often say the best thing that happened for me once I was diagnosed was progressing to AML. Before that nothing worked and I was in real danger of getting in trouble with infection.

[CarolineG]

Susan,

My Dad is 80 and had MDS for at least 3 years…possibly several years longer and he didn’t even know it. Last summer, after a BMB we found out that he has CMML. It is a Chronic form of Leukemia. Dad’s Oncologist told us that it is very slow moving and a person can live with it for many years as long as they keep their immune system healthy. My Dad gets Aranesp shots as well and he has only needed one transfusion so far.

When I first found out I obsessed about a prognosis for the first couple of weeks and nearly drove myself crazy with worry. I think that is natural. For the first couple of nights I combed the Internet for the ‘answers’ and nearly lost my mind. I NEEDED to know how long Dad was going to live. Shortly afterwards I found this Forum and got alot of good advice. The most important was to NOT dwell on the prognosis. Think about today. Enjoy the time you do have with him. Look at possibilities for recovery, find ways to help your Dad keep his immune system strong, and try not to concentrate on the numbers. The ones posted on Internet sites are pretty outdated anyhow so you get a false sense of what is to come. Every case seems to be different. Different treatments, different schools of thought. You can always come here and find some sort of peace when you get really upset. There is always someone who will be able to tell you a story or give you some advice that may help you.

I understand exactly how you feel. I told Dad’s Oncologist that I didn’t want to know a prognosis even if he had one. He has never said a word about it.

Best Wishes with your Dad. Keep us posted please.

Blessings,
Caroline

[SusanJ]

Dear Lynette, Suzanne, & Caroline,

God bless you! Thank you for your encouraging words. I always feel better after I come to this forum. Everything else I read on the internet scares me so much! This is so hard for me. I am having to learn to think in terms of minutes, hours, and days, not years. I am having to rearrange everything. I have always known that we should live in the present because none of us are promised tomorrow, but now that I’m truly having to do that, it’s hard. Bless you all, my new friends. I love you.

[Jim]

Susan,
What makes you think he will have leukemia? A lot of us don’t and may never have. And from the other responses a lot of people manage okay. I was diagnosed with MDS two years ago this month and am still hanging in there.
JW

[gemloyear]

Susan, My husband was told in Jan. 06 that his MDS had evolved into AML, it is so difficult to accept. Glen seems to accept it far better than me and our family. He has opted for no chemo.His Doc gave him a choice, it was explained to us because of his other medical conditions that there would be many side effects and suffering if he decided to go the chemo route. And that it would no doubt shorten his life.At that this time he is receiving tx and heart meds, prednisone and pain meds, also vit. and herbal supplements.So far his quality of life isn’t bad and he still has his sense of humor. He tells the Doc that he is going to hang in there for the next election!! Good luck for your Dad and I hope his next biopsy is good. God Bless,
Ellie

[SusanJ]

Dear Jim and Ellie,

The doctor told us after daddy’s first bone marrow biopsy that he had an abnormal chromosome that makes the disease progress to AML much faster than others might. That is why I can’t get leaukemia out of my mind. Ellie, did the doctor give Glen a prognosis? My dad has heart problems and I don’t think would be a candidate for chemo. I don’t think I can bear this. I am so afraid. God bless you for your bravery.

Susan

[gemloyear]

Susan, Glen has abnormal chromosomes also that will cause it to progress faster. He had his last BMB in Nov. dx as RAEB-M1, showed blasts of 6% in marrow and 1% 1n blood. By Jan. 7% in blood and has continued to go up to 16%. The Dr. doesn’t think it necessary to do any more BMB’s.No she didn’t give a prognosis, but she lined up hospice right away, we had hospice for a month until we took a trip. Glen didn’t chose to keep them because he thought it too confining. We did get a second opinion, and then I mentioned we had not asked for a prognosis. The DR. threw up her hands and said 2, or 6 months or maybe 1 or 2 yr.who knows?? I wasn’t really expecting a direct answer. He had pneumonia in Mar. which caused atria fibrillation.He has had so many illnesses in the last few years and has had serious side affects from almost all meds. So I can understand why he refused to do any chemo.Aranesp is one of the meds that caused side effects, he got blood clots 3 times from it. I was aware of it from reading a warning on the internet. The Dr. didn’t take him off it until the 3rd time, after being hosp. with DVT. It has been a rough road, more than anyone should endure. Go along with what ever your Dad decides to do. Be strong for your Dad.
Take care Ellie

[Suzanne]

Susan, My 5q- chromosome change was given the same interpretation-made me much higher risk. I think it is wise to be prepared and still not give up hope.And I know that must be a hard thing to do. You can see from the replies we are all so different even with what look like similiar diseases-They don’t know why and they really can not forecast what is going to happen-just give you an educated guess about what is likely.

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