Husband's Diagnosis

[CAR]

I think the news is hopeful, but I would appreciate input from all of you. My husband of 32 years, Alan, is diagnosed with MDS-RA. His IPSS score is currently a 0 which gives him the longest possible prognosis. Here is where I’m still confused. The hemotologuist says he has hypercellularity in the 60-70% range and it should be 50%. I think that means immature or mishapen cells are crowding out the good cells. Is that right? If that is so, why is his only symptom slight anemia (RBC 11.8)? His white count and platlets are normal. Also, the cytogenic test isn’t back yet. If it comes back with normal chromosomes I wonder if the MDS diagnosis is even correct since Alan’s B12 is low and that is the only current treatment he is getting.

Since Alan is so young (56) and otherwise in perfect health the hemotologist is suggesting City of Hope and the Hutch for second opinions and to consider a transplant. It’s hard for me to imagine that Alan could be so healthy and feel so good and actually be a transplant candidate. Our Doc is board certified in hematology, Internal medicine, and oncology so I don’t think he is out to lunch. I’m just in shock and dismay over the whole thing.

Also, we are seeing a world renowed Naturpath (oncologist ok’d it) this Wednesday. Anyone have any luck with alternative medicine?

Thank you all. This board is a blessing to us.

Chris

[Neil]

Hi Chris,
Would wait for the cytogenitics before forming any conclusions.
A second opinion would probably confirm the current docs DX.
Have you considered going to The Univ. of Arizona-Tucson?
A transplant is always a risk. His age is in his favor, but you must know the success rate on patients his age with RA AND the time period the transplants have been successful! A transplent is the only way to a cure at this time, but many patients survive for many years on drugs (such as Procrit) and transfusions. The transplant decision is difficult and takes time to develop and most of all a donor that is a perfect match.
It will take a considerable amount of time to iron out all of the options so you may be certain of the final decision. Be aware there are many docs who will encourage a SCT of BMT to build on their knowledge base. Would avoid such a situation.
Would also get on a SCT/BMT support list and glean all of the info possible from those who have had one. Particularly those who have survived for more than 5 years.
The hypocellularity might mean his red cells are cloning. The abnormal cells clone and produce more and more abnormal red cells that do not function properly. Would clarify this point with his hemo.
MDS patients are all different. It is very rare to find 2 who have like symptoms. We react differently to the disease and to treatments. But the results of a BMB are pretty conclusive.

[patti]

Hi Chris,

My name is Patti. My MIL was diagnosed RAEB-t about 19mos ago and did not have a good prognosis. About 4-6 months according to her hemo. Her IPSS score is 2.5. She chose not to do any chemo (that’s all they offered her due to age) and to treat herself naturally. And 19 mos. later here she is. This past month is the first time she has started experiencing side effects from her MDS. Her naturapath sent us to a Chinese Medicine guy last week and it was very interesting. He said red blood cell production is easy to fix. He shook his head and said, “platelets, that’s much harder.” He has mom on a mixture of chinese herbs to help all three cell lines of her blood. He is expecting to see good changes with her reds within a couple of weeks (I guess time will tell) but said it could be awhile before we see a change in platelets.

Your husband has a good prognosis. I would be REALLY hesitant to jump into a transplant. Yes, they say that is the only cure but from what I’ve seen on this board and the leukemia board, there are soooooo many side effects and the long term survival rate does not appear to be that great. I think Jimbob and the couple of people who have done best with the transplants are using natural medicine in conjunction with their medical doctors prescribed plans. It’s actually a practice called complimentary medicine. I guess all I can say is really do your research. Lots of it. And I would think long and hard before doing a transplant (I think most people do anyway). If he likely has many many years with the RA, it seems like a transplant could/would greatly reduce his time if it’s not successful. If you can do a search on this forum for Marla’s website and John’s story I think you will get a better feel for what kinds of natural things are good to do. Working with a good naturapath is a must and it sounds like you’ve found one.

Best wishes,

Patti

[lindajo]

It is your local hemo’s responsibility to recommend being evaluated for a transplant. Being evaluated does take time and is good insurance in case your husband gets worse in the future.

So far it looks like he is in the best category for this disease and don’t be surprised if they take a wait and see approach. Supportive care many times feels like you aren’t doing anything to get better, but it is a better option than jumping in and doing the wrong thing.

Eat a healthy diet cut out extra sugar and fried foods they really aren’t good for anyone. It is possible to have this disease for a long time and only have slightly abnormal counts and fatigue. Good luck with the second opinions.

[Viv]

I was diagnosed with MDS in 1985 when I was in my 30s. Unfortunately, I was never given a classification.For three years prior to my diagnoses I was given Folic Acid & B12 injections which never altered the blood picture.It was at that point that the diagnoses of MDS was made.I take no medication & have only received supportive care. My haemoglobin fluctuates between 10 – 11.5, platelets around 112 & RBC 3.34, wbc remains normal apart from a slightly lowered lymphocyte count of 28. My point being that it is possible to carry on a normal life depending on the severity of MDS.I have notice a steady climb in my ESR at present 112 when the nom is 0-20. Has anyone else experienced this & is it a normal reading for someone diagnosed with MDS. Hope the above is of benefit to you!

[Author]

Posts