Newly Diagnosed

[Kellie DeVito]

My father was diagnosed with MDS – RCMD last week. The doctor wants him to explore stem cell transplantation from a nonrelated donor. He is 70 and has no brothers or sisters. We will explore this option, but feel it’s too aggressive at this point. He is symptomatic, tired, pale and has low counts in all three areas, red and white cells along with low platelets. He has no other symptoms, though, no bruising, etc….I am wondering if anyone in this category has been given Vidaza and the outcome. The doctor talked about only transplant or supportive care (growth factor injections??) at this point, but we feel lost and can’t tell if Vidaza is an option for RCMD or only other types of high risk categories.

[rar]

When I was diagnosed with MDS RAEB2, the high risk form I had a 50% chance of living 5 months with a 3 year survival rate of 4%. I was given an experimental drug that in 2 months reduced my blasts from 14% to 2%. The doctors told me that no drug cures MDS, after a while they stop working. I was healthy (for a 73 year old) so I was told have the transplant when you are in your best health. If you wait the chances of survival diminish.

Given the choice of living pretty normal after a transplant cure was about 40% at 3 years, or if I went on drugs that give temporary remission I stood a 4% survival rate. It wasn’t hard for me to do the math. Why do you feel that a transplant is too aggressive?

I do have a friend of a friend who has been on Vidaza for 3 years. It worked for a while but she is now at the end of the line.

Ray

[Kellie DeVito]

Hi Ray. We are meeting with Transplant docs ay 2 centers next week. Karmanos and u of m. I’m worried that since my dad is intermediate risk and not high, we should be more conservative….he has good quality of life at the moment and no match for donor so was worried about trading mds for g v h disease or worse leaving him with diminished quality of life after transplant. Second opinion doc said 24 percent chance each year of progression to AML and life threatening low white count so my dad is now really considering transplant. He’s 70 and “fit” as,they say now. Whole thing is just really scary. Glad to hear you are doing well!

[rar]

How did the meeting with the transplant doctors go? Is your dad having success with his present treatment? How fast is the MDS progressing? These are some of the factors in deciding on a transplant. If he is going to have a transplant it is best to do it when he is strong as this has the best chance of success. I had my transplant when I was barely having any symptoms. I was high risk and progressing rapidly.

Ray

[Kellie DeVito]

Hi Ray. Meetings went well. None of the transplant docs think he’s in need of one now, but we started the matching process since it can take awhile. He had his first Neupogen shot today. U of M doc thinks that’s the best approach now since his WBC is so dangerously low. Other counts aren’t all that bad….so they say! He’s in the intermediate risk category. Presently, my biggest concern is significant weight loss….they ran thyroid test which was normal. This seems to have all 4 of the doctors we’ve seen puzzled. My dad feels good and can’t believe anything is wrong with him, but is worried about the weight. I guess we’ll make him start drinking Ensure! Should know in about a month what his neupogen shot schedule will be. Thanks for checking in! Keep in touch.

[rar]

With intermediate risk chemo may give the best results. Listen to your doctors. Looking for a donor now is a good idea. I went from MDS that was so mild it would never need treatment to very high risk that would kill me in 5 months. 3 different oncologists said I needed an immediate transplant. I never felt very sick but the tests were conclusive.

I had 2 bouts of weight loss. I lost 40 pounds in 6 weeks. I was put on TPN for 6 weeks and stabilized. In the 3 months I neither ate or drank anything. The weight loss was obvious. Eating again and a lot of exercise put 30 pounds back on. Another time I lost 20 pounds. I think the cause was prednisone. This time I was eating 5 meals a day with a lot of eggs, yogurt, protein drinks etc. and gradually put the weight back.

I wish you and your father well. It is difficult being a caregiver. Keep me posted.

Ray

[Richard Wagner]

HI to all, I was diagnosed with MDS Aug. 2015. Starting cycle 6 of Vidaza shots 7 March. WBC are 1.5, GRA at 0.7. My local oncologist gave me 1-2 years. Sent me to University of Chicago for second opinion. The did Blood tests, and another bone marrow biopsy, and told me same thing. 1-2 years. Getting another bone marrow biopsy in March. So its what to do if the Vidaza is not working. My blasts were 18% 6 months ago. If they are higher I may only have months left. I am 75 years old, and had a better life then most folks I am thinking. Perhaps there is something waiting for us on the other side..

[rar]

Have you considered a transplant?

Ray

[Richard Wagner]

I was told that because of my age, 75 I was too old for transplant. University talked about it, but I would probably not survive that ordeal.

[rar]

I was almost 74 when I received my transplant. I survived. That was a year and a half ago. Age was never mentioned before the transplant. Transplant is the only cure for MDS. other than MDS how is your health.

Ray

[Richard Wagner]

Hello rar– I read your message from Jan 10 and nurses thought you may die during your ordeal.. This is not
a life I want to live. I am in fairly good health, but have COPD. My Oncologist could not believe the test results because I looked so healthy. I kinda made a decision to have quality and not quantity of life.

I have neighbor that is 56 and had transplant. Same thing. He went through hell, and is at 2 years with continued problems with his body rejecting the transplant stem cells.

I wish you continued good health, and same to all on this wonderful web site.
Richard

[Kellie DeVito]

Hi Ray. Neupogen worked,for like one day, then neutrophils plummeted, so trying to get a shot schedule in place. Lots of blood draws! Last labs show that platelets are down from about a month ago, 74 to around 58 now. But doc still says that’s ok. My dad feels fine but the weight loss is bothering him. He’s down to like 158. We assume this is from the disease. What is TPN that you mentioned above? Hard to know what the level of progression really is….this all seems so unpredictable!

[Richard Mousigian]

Have a pleasant journey Richard.

• This reply was modified 8 years, 1 month ago by Richard Mousigian.

[Richard Wagner]

Thank You Richard M. I wish you have a pleasant journey as well. We all have that road in life that has
some detours and they all have an end. I dont mind the end of the road but how we get to it in some comfort.

[rar]

A transplant is a risky procedure with 30% cure rate a 3 years, other treatments have a 3 year survival of 4%. I choose the transplant and had some rough spots. I would hate to go through that again but if necessary I would. If you look at the other MDS forum you will see stories of people denied transplant who meet a somewhat unpleasant end. My transplant doctor says he does transplants not to extend life, but so that I can live life. At present I have a good quality of life not much different than 2 years ago.

Another option is immune cell therapy as pioneered by Dr. Riddell. They remove some T cells and by genetic engineering train them to be cancer cell killers. They re-inject and the cells do their job. It is still phase 1 at MD Anderson and others. My oncologist thinks it may replace transplants in a few years. It was not available when I had my transplant.

TPN is the stuff they give you for intravenous feeding. It is glucose, amino acids, vitamins and minerals. It will keep you alive. You don’t gain weight on it. I was unable to eat or drink for about 3 months. the first 6 weeks I could hardly move and I lost 40 pounds, mostly muscle. I was then put on TPN for 6 weeks and I stabilized. A month of that was at home with the TPN and pump in a backpack that I used 18 hours a day. I currently weigh 158.6 at 5’9″. This is a healthy weight. I would only be concerned if someone is loosing muscle weight or a large amount in a short time as I did. The secret is to keep exercising daily.

I am not a quitter. I believe with plenty of exercise to keep strong, a positive attitude, and a good caregiver you can beat the odds. Combined the odds of MDS and the infections I had, survival was less than 10%. But I beat them.

Platelets are a problem at less than 10. At that point you get a platelet transfusion. Mine were as low as 5. It is no big deal.

In general MDS is not a heritable condition. My father died of leukemia about 40 years ago. I think that was before they invented MDS.

I wish you both the best of outcomes. Ask if you have any more questions.

Ray

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