Dad now has AML

[Jeanette B]

More bad news today, Dad’s MDS has now progressed to AML. He is on blood thinners for now to disslove the blood clots in his lungs and once that happens they will start Chemo. Not sure what drugs they will use yet. We had a Skype video call the other day and he looks like there is nothing wrong with him. It is hard to believe that it has progressed so.
So guys, what do I expect now? Any thoughts will be appreciated.

thanks

[PupsRule]

Jeanette — first, my heart goes out to you and your dad. This is a most difficult disease for patient and caretaker.

I’m in a similar situation, and just finished a course of induction chemo, which is designed to put the leukemia in remission — consolidation chemo usually follows that. How long the remission lasts varies – sometimes years. In my case, the docs are looking to get me into a strong enough remission to plan on a transplant which, if successful, would be the cure. Might your dad be a candidate for a transplant?

[Jeanette B]

Hi Judith,
Thanks for the reply, your post has given me some hope. My parents don’t knopw much or ask many questions so all I know is that he is soon to start chemo and has been given a 50/50 chance of success. Not sure whethet they are just listening to the worst case scenario or not. I have seen through this forum how others have gone on for months and years after chemo and various treatments, so I’m glad he is finally getting what I thought he needed from this new hematologist. What kind of transplant are you waiting on? Hope you will not have long to wait.

Best wishes

[ramboy]

Dear Jeanette,

Similar situation with my dad.The MDS progressed to AML at such a speed that we had to take the decision on chemo practically overnight. He finished a round of induction which initially resulted in about 10% blasts( from about 50% about 25-30 days before that). After a weeks break the doctor said that the blasts have further come down to 4%.

Now, they have started consolidation with only ARA C. They have not indicated how many cycles would be required but they are very very careful because he is 68 and has blood pressure. What really has helped( really really) is somehow getting the patient to relax and distract from the disease. This was very hard for my dad initially but now he has learned to cheer up whenever possible.

Also pray and also take support from the forum.

P-

[Jeanette B]

Ramboy,

Thanks so much for your post, hearing that your Dad has had such a response to the chemo is very comforting. I am not sure where my Dad’s blasts are at right now but my Mum has posted a medical test report to me (they did not understand it) and hopefully it might shed some light. It is also good to know that the patient’s frame of mind can be a positive thing as my Dad is a fighter and he doesn’t even look like there is anything wrong with him. My Dad is 76 and they are trying to disolve a blood clot in his lung before they start the chemo. He is also prone to infection, I think that’s what they mean by neutropenic, so hopefully he will be okay with the chemo.

Again I am so appreciative for any advice you guys can give me. Being on the other side of the world from them makes it hard to lend support to them, so these bits of positive information is the best I can do and not to mention the comfort it gives me.

thanks Ramboy

[Sandy Willett]

Jeanette,

My mom is on day 27 of induction chemo. She is 57 years old and was diagnosed with MDS in May 2008. After a BMB on January 7 she was told that she had AML. She did a 7-3 (7 days ARA-C, 3 days Danarubicin) for the first round of chemo. She handled this round of chemo wonderfully. It was not enough to put her into remission. They have since done a second round of induction chemo (6 days high dose ARA-C). This round was not as easy as the first. She has been fighting a high fever, diarrhea, low blood pressure, blisters on her hands from the chemo, a rash and loss of appetite. She said nothing has any taste anymore. Her second BMB is scheduled for Wednesday. This disease is so cruel. Its not an easy fight but tell your dad he is not alone and there are many who will be think about him. You are all in our prayers.

[Mary4Mike]

Sandy,

Where is your mom having her transplant done? Is it Karmonos in Detroit? Who is her doctor there?

She is in our prayers.

[Jeanette B]

Sandy,
Thank you so much for your response. I am sad to hear that your Mum is not doing so well the second go around. Take heart in the posts of others that this tough phase is just the stepping stone to her body taking her to a remission and a well deserved rest. You are right this is a cruel disease and it is a comfort to know that there are so many wonderful people on this forum to support and pray for you. As my Dad is still waiting for his lung clots to dissolve, he hasn’t started the tough road yet to be travelled, so he still appears to have little wrong with him. It’s hard being so far away.
My best wishes to you both for a positive outcome and for us all.

[Frankie]

I just found out last night that I have AML….have had MDS for years.
They want to rush me in and start treatment. I know nothing about AML and I’m scared to death….basically of pain. Can someone point me to a site where I can get info on exactly how it’s treated?
I’m afraid to even talk to the doctors at this point.

Frankie

[jaxem]

hey, frankie
so sorry to hear you have progressed into aml. there’s not much difference between mds & aml, just the amount of blasts so you can go pretty quickly between the two, back & forth. I agree with getting you into treatment asap. that’s one thing about mds & aml, there’s never a big thing on pain. that’s why it’s such an insidious disease. the "pain" is loss of appetite & thus weight, becoming infected easily with infectious diseases, fungus, tiredness, bleeding issues, etc. DO NOT BE AFRAID TO TALK TO YOUR DOCS!!! They’re the one saving grace in determing how to deal with this ugly disease. AND if you don’t have a doc that will spend the time with you to answer all your questions, find another!! My wife would become exasperated with me because I had a million questions for her hematologist. And the guy would spend all the time in the world to make sure ALL our questions were answered. A typical session with him would last about an hour. From my experience, this site is the best one I’ve found to vent and find out answers to my questions. Use your browser and research also. Please stay in touch with the Forum and ask here.

[Frankie]

Thank you so much, Jack. You made me feel a bit relieved. I see the doctors tomorrow They have a few trials going on there at the Cancer Center. But, I may opt to do nothing.
I bought a digital tape recorder so I can tape everything they say. My memory isn’t the greatest these days.
I kinda wondered about my MDS turning to Leukemia. I have a lot of bruising and spent 6 days in the hospital for a cat scratch. But I was told that MDS RARS doesn’t progress to Leukemia. I’ve had it about 14 years.
Thanks again, Jack.

Frankie

[jaxem]

frankie
great idea about the recorder. I had one too & it proved to be well worth the expense. The docs give so much info & a lot of it flies right over your head but if you can play it back while doing research with your computer, you can really learn a lot. RARS shouldn’t go into leukemia as there are no blasts involved. I assume you have had a biopsy that showed other than RARS.

[Frankie]

Jack…
I always felt a bit safe knowing RARS doesn’t turn into Leukemia.
Surprise! Surprise!
I was on Revlimid and went without transfusions for over a year.

Frankie

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