Looking forward from an answer from all but especially Neil

[fotis]

Hi all

I am looking forward for an answer particulary from Neil, but all can help i believe. As you can see the diagnosis of my mother was RCMD (refactory cytopenia with multilineage dysplasia). She is 50 years old.

The more i am searching the internet the more discouraged i became. The following paper for example http://www.mednet.gr/eae/haema says extremely low surviving rates on RCMD. Also in most things i read, RCMD is somewhere between RA,RARS and the other forms. As i see, you have MDS-RCMD for 8 years. Can you give me an general advice about diet, exercise or medicines you are on? Anything that can help actually and you believe t helped you. On the other hand i have come to the conclusion that younger people deal with MDS better if they are on low or inter-1 level, but age does not make a difference for inter-2 or high ipps score. Note that mom has normal blast(doctor said no blasts).

Next week doctors will make known to us what they decided about going for a BMT or not. My mother has dysplasia on all 3 lines, but red ones are a bit above lowest normal limit (but always have been around there), palletes are ok (200.000) and only WBC shows around 2-2.3 (normal being 4.5-12). So only leukopenia is the problem now. Doctor hasnt told us about the chromosomal abnormalities and if there are any. She also didnt give us any medicines.

So we have to make the decision to go for the transplant or not. On one hand, in the most optimistical way of thinking mom, might have 10 years to live (until 60 that is, too young in my opinion), and on the other hand with BMT may be a a lot less, or a lot more. Any words of advive would be more then welcome.

Mother doesnt know how serious things are, she only knows that she has something that may transform to leukemia, but if not, no problems will come out of it.

She afraids of the surgery about BMT TOO MUCH. Last week she broke into tears 2-3 times, and complained about god for sending her something like this, and not something that you can take medicines and and have a chance for a cure.

Love her so much, both me and my brother (26-27 years old) are single, and didnt have the hapiness to give her grandchilds until now, she is so young, and always full of energy. She always have been the heart of the family taking care of us. In fact she cared more about us then hershelf, that makes the fact that she is sick to pain even more. Cant think i am able to handle it right now.

MDS is so scaring, best of my wishes to all of you out there. Some answers would greatly apreciated.

Fotis

[fotis]

correct adress : http://www.mednet.gr/eae/haema/pdf/7-sup-03.pdf

[willie]

Fotis Your mom should have the bone marrow biopsy. The doctors also have a life expectancy scale if no transplant is performed. My wife was told that she had 3 1/2 years to live without a transplant, and that the transplant was the only potential cure. She was 55. It is likely that the disease could have started as much as 15 years earlier but showed itself last spring. Having read most of what people are saying in this forum, and given that she is 50, I would do any of the appropriate treatments short of the transplant until she absolutely needs it. If she is a young 50 then she would probably be a young 55 or 60 year old person and still deal with a transplant ok.
Willie

[frank]

hi Fotis,

i am RCMD too. if you have a related match in your mom’s case, your mom may think the BMT, which the servival rate is pretty high now. if your mom doesn’t have the luck, like me, may try the best to save herself—supportive care.

doctor give me 7 years to live, i hope i can beat the number, but in between, it may have many things happened; just don’t trust the number which doctor gave to you, i think there are so many people on the Forum are far beyond the doctor say.

Frank

[Neil]

Hi Fotis,
Survival rates for RCMD are a bit confusing. RCMD patients can have an excellent prognosis or one that is poor. It depends upon the cell counts and how they trend over time.
Your mothers counts look very good. Only 2 lines are below normal and her red cells are just abouve the lowest normal limit.
It appears her problem is with her white counts.
As long as she does not have any problem with infections, colds, viruses and her absolute neutrophil count is in a comfortable range, she should do well.
If her counts begin to trend downward over time drugs such as Procrit for red cell production and Neupogen for white cell production may help.
My diet is low fat, low carbohydrate ( am a diabetic) lots of water. Take a multi vitamin, Vitamin B-6, Vitamin C and garlic capsules. My wife insists that garlic prevents sinus infections. Have had problems with sinus infections when weather cools down and humitity goes down. We will see what happens. Also take about 2500 mg of vitamin C if I feel a cold coming on. Normal is 500mg per day.
Walking is good exercise. BUT do not over exercise. Start out modestly and build distance over tome.
All of these suggestions should be approved by her doctor!
A transplant is a risk! If her counts do not decline and her quality of life is good, I would question why she should have one.
Before committing to a transplant you/she must know how many transplants the hospital/doctor have performed?
How many were performed on 50 year old women with RCMD?
How many survived over 5 years?
Does she have a brother or sister that is a perfect donor??? This is absolutely necessary –at this time.
Stem cell transplants have improved over the last 2 years. The longer one waits the better the transplant technology will become.
The last thing she needs is to have a doctor push her towards a transplant so they can learn more about them.
All MDS patients are different! BUT if you compare her counts to mine:
RBC 3.84
HGB 11.9
WBC 1.2
Platelets 10,000
and remember I have survived over 9 years there is reason for you/her to be encouraged.
IF her counts do not move downward, she could live very close to a “normal” life time.
If RBC goes down, would look at Procrit or Aranesp.
If WBC goes down would look at Neupogen or Neulasta.
Also remember if her blasts remain normal and her white count does not increase, the chances of her transforming to leukemia are very , very low.
Considering the progress with drugs over the last 2-3 years, it is very possible there will be more effective drugs in the near future.

[fotis]

From the depths of my heart, i thank you all for the answers. Very encouraging indeed, you really made my day more happier.

Truly Thank you, Fotis

[Author]

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