Father In Law Dx with AML

[Grover]

Hi all,

My father in law was Dx on Thursday with mds/aml. He is 72 and hasn't been feeling well the last few months. He is starting vidaza on Monday. During the past few weeks his performance status has dropped, color doesn't look good etc. I do not know his Ipss score yet, I presume he is in the high risk category.

His oncologist didn't give a prognosis nor did my mother in law and father in law ask. They are of the generation that doesn't as the doctor questions. My wife is going to the next appointment on Thursday.

I assume his prognosis is bad. What can we expect on vidaza? 3 months....6.....

What can expect on this terrible journey?

Thanks

[bailie]

Grover, we wish your father-in-law the best of outcomes. Vidaza saved/extended my life with little side effects. About 40-50 percent of people respond to Vidaza, hopefully your FIL will be one of those. I was on Vidaza for eight months and I improved until my counts were normal and I then had a stem cell transplant. While on Vidaza I was golfing every week and living a very normal life. It is very important to be aware that the anti-nausea pills they will give him will cause constipation in most people. It can become very serious. Be ready with the Miralax.

Learn as much as you can about MDS. The archives on this forum cover about every topic that you can imagine. Ask questions. It is very difficult for doctors to give a prognosis because every person has a different experience. How is your FILs health besides the MDS?

[Grover]

Bailie:

Thanks for the reply. His Heath has really gone downhill during the past 3 months, especially the past 3 weeks or so. Been going to the md for various tests for about 5 weeks (egd, colonoscopy, chest X-rays) and finally came up with a Dx last week. His health prior to all of this was pretty good.

Hopefully the Vidaza can help his QOL, he is really tired and gets out of breath quickly. Back at the beginning of August he was dancing at his step sons wedding.

I hope to have more info soon, ie %blasts.

Will keep you posted.

[Annettec]

My 78 yr old mother was diagnosed in May 2014 with high risk MDS. Blasts were 13% and have stayed relatively stable since.
Has been on Vidaza since, and about to start her 17th month. Follow Baillie's advice....bang on! My mother's QOL also very good, except for feeling a bit of malaise for 2-3 days during her week of treatments. She was only hospitalized twice in 17 months for high fever....was discharged in both instances after 3 days. She did not need transfusions at all until just recently. Now getting transfused every 4-5 weeks for red blood.
Hope vIdaza works out for your fil.
God bless,
Annette

[Grover]

Got a copy of the path report. He has 17% blasts. Any other info on the path report I should look at to better understand the severity of his disease?

Thanks!

Daron

[italianburrito]

Originally Posted by Grover

Got a copy of the path report. He has 17% blasts. Any other info on the path report I should look at to better understand the severity of his disease?

Thanks!

Daron

Yes Grover, I would look to see what kind of cell mutations (cytogenetics) are present which can also help with prognosis. 17% to me seems like a diagnosis of MDS since anything over 20% is considered AML. Vidaza will make him feel like crap but the hope is that the bad cells that are there will change their DNA to a healthy cell. He will become transfusion dependent and hopefully only temporary!

[bailie]

We have been wondering how your father is doing? I hope well.

[italianburrito]

Originally Posted by bailie

We have been wondering how your father is doing? I hope well.

I will post an update! So much has happened.

[Grover]

Lot has happened in the last week or so. my FIL completed his first round of Vidaza. He went for a kidney biopsy last week and was admitted to the hospital on 10/28. Very weak, bloated, needed oxygen looked like death. We were expecting the worst, even then oncologist on call said his condition was very serious. He has stabilized a bit, no longer on oxygen, still bloated and having some cognitive issues. He was moved to a hospital in his hometown and his treating oncologist saw him yesterday. More pathology came in and he is Jak2 positive. Doctor said he has Myleofibrosis and MPN. He seems to think the combination of Vidaza and Jakafi will help him considerably.

Hopefully he will get a response and his spleen will decrease. While he is not out of the woods, we don't think his situation is not as critical as we had thought earlier this week.

[Martin G.]

This is my first post. Instead of starting a new thread I thought this might be a good place to post my questions.
I am German and work in the DC area. My Dad in Germany was diagnosed with MDS which in September progressed to AML. He is 80 years old and otherwise in very good health.Right now he is in his second round of chemotherapy. So far he has been coping very well.
He will be taking part in a clinical study with oral Vidaza beginning mid December. He heard that oral Vidaza has been around in the US for a longer time, whereas in Germany it is still in the experimental phase.
Now my/his question:
What are the experiences with oral Vidaza?
Has there been a recent study about oral Vidaza in the USA?
Thank you so much for your help!

[bailie]

Martin, I am envious that your father has a chance to be part of the study. Oral Vidaza is not yet available here in the U.S. as standard treatment. I belive it is still in Phase III trials trying to determine the proper dosage. It must be difficult because they have been working on it for quite a while. I hope that your Dad can contribute to this information. It will help all of us.

[Martin G.]

Bailey, thank you for the information! I will try to find out more about the experiences with oral Vidaza in the US. One more question: I asked my Dad about the prospect of a stem cell transplant or marrow transplant. But he said they dont do that in Germany for somebody his age (80years). Is that the same in the US?

[bailie]

Martin, usually the age for transplants doesn't reach 80. It is usually determined by the different hospitals. Many people have done extremely well with Vidaza. Let's hope your father is one of them. Just a note, I received my stem cells from a 20 year old man from Germany.

[Martin G.]

Bailie, thanks for your support and your good wishes for my Dad! And how wonderful that you got help from a young man from my home country! It is great to have an international support network, and it is wonderful to have such a forum.