Questions about SCT

[fotis]

Hi all,

I would glandly appreciated it, if someone could answer some questions about SCT for me. My mother was diagnosed with RCMD, until now only WBC is low (2.4) and the rest are just above lower limit. Normal cytogenetics. Her doctor said we would not go for a SCT for now. She also didnt quite explained how bad things are to my mother, but told her MDS is something she could live for 20+ years.

I am not at all satisfied with this approach, as my mother is pretty young, and could try a SCT if things start to go ungly, and by doing nothing we dont quite help to improve chances for survival. But the doctor didnt even initiated an exam to examine if her sister is possitive for SCT.

So, here are my two questions:

SCT is also possible with unrelated donor at this age (50)? if it is, i will surely go to another doctor myshelf, and initiate the needed procedures for the search of a donor.

The second question is about survival with SCT. I have spent hours searching the internet about informations, but i didnt quite get a clear view of the survival ratio… IS SCT a posible cure?? or its just gives a few more years to live? Is it true that as time goes by, the possibilities for a relaspe are getting higher, meaning in 5 years someone has 50% chance of relapse, in 7 years 70%, and so on? If thats the case, a relapse is for sure??

Also as you can see by my signature , i am from greece. We dont quite have much money. If we wanted to try to do the operation at USA or England (by selling everything we got), how much this would cost (staying at least 3 months is necessery i have read, and naturally our insurance would not cover much of the expenses). I dont need a precise cost, just something to know if we can afford this option…

All answers would gladly appreciate it.
Thanks in advance.

[Alice S]

Hi

Firstly find out as much as possible, this forum and website are a good start.

Your mother’s WBC is much higher than my mothers wich is hardly ever over 1. She is transfusion dependant, needing a transfusion every three to four weeks. A search for a donor has been started now as she has 10% blasts in her marrow of only 5%. So I can see why your doctor is rather calm. But that should not deter you from getting another opinion if you are not happy.

In the begining one feels that the doctors are not doing enough, but as you learn more you will become wiser and will be able to judge better what is right for your mother. A SCT is a very risky procedure, and yes a transplant from a non related donor is possible at an even later age, my mom is 63, a young and otherwise healthy 63! A search is currently on for an unrelated donor as her sister is not a match.

My mother met a Doctor at the hospital who had a transplant, his bone marrow functioned for two years and then failed, he is back at square on and tranfusion dependant. As for survival rates, you will have to find out more yourself. My mom declined a SCT in the at first because with MDS RA only 20% of the patients usually progress to CMML, however in July 2006 her BMB showed that she is unfortunately one of the 20% and has now RAEB-2 with 10% blasts in her marrow. Now she knows that a transplant is the only way out and so is now will to take the risk, eventually when her condition is even worse.

Hope this helps a little, one feels so helpless in the begining and it feels as if one is in a dark corridor, but this forum will shed quite a bit of light along the very bumpy road you and your family face!

Good luck
Alice

[g-masews]

Hold on, don’t start selling anything yet. Your doctor is right, things aren’t horrible (in spite of what you might read). From what you wrote, the WBC is a little low which only means that if she gets an infection in her system, watch it closely. Wash hands often, avoid sick people, treat cuts and open wounds immediately, that’s all. Other counts are’t bad, it appears. Normal chromosomes – Great! She can go a long time with no apparent problems, just have her blood counts monitered as often as dr. suggests. You don’t need to have her sister tested at this point (other than for peace of mind) as it won’t take long to do if and when the time comes. Searching for a donor is expensive and won’t be done until you are ready to commit to the transplant. The transplant can possibly be a cure (if all goes well) but it can be very risky and pose a great many other problems. It is also very, very expensive (could go upward of a half million with complications)especially without good insurance coverage. She could be giving up a lot of good years with minimal problems for major ones if she does it now. Also, she sounds to me, from the little you wrote, that she maybe a candidate for a mini-transplant. Those are getting better all the time and are being done on patients up to mid-60’s or older. And the technology gets better all the time, so waiting can’t hurt, if your dr. agrees. When my husband was first diagnosed, I was so frustrated that no one was putting him on any kind of medicine, until I realized that was a good thing. The longer he goes without needing anything, the better he is. Treatments are there is he needs them, grateful if he doesn’t. Throw out anything you read on prognosis timeframes, most don’t apply anymore; keep up with this forum (you’ll learn more here than anywhere), and don’t sell the household yet!!

[Neil]

Hi Fotis,
The 2 previous posts have given you good advice.
A SCT is fairly new for MDS patients.
I know of a woman who had one in June of 2000 at age 57. She is doing fine.
The risks are considerable for most. Much depends upon how well the donor matchs your mother. If her sister is not a match a matched unrelated donor (MUD) is possible , but the odds for success go down.
The transplant facility is another consideration. If she does elect to have a SCT at a future date she should be comfortable with the answers to a number of questions.
How many SCTs has the facility done?
How many were successful?
How many SCTs were done on women with RCMD your mothers age?
How many SCTs that were done on women with RCMD your mothers age were successful?
How many were successful for more than 5 years?
What is the next step if the donor cells do not graft?
As a rule the more SCTs a facility performs the better they become at doing them. Unfortunately they learn from their mistakes!
There is a doctor at The National Institutes for Health ( Bethesda, MAryland)that has been researching SCTs on unrelated donors. His name is Dr Richard Childs. He might have some information.
The cost of an SCT could exceed $500,000. It could take many months for recovery.
In the U S the primary transplant facilities are The Fred Hutchinson Cancer Center in Seattle Washington. M D Anderson Cancer Center in Houston, Texas and The NIH in Bethesda, MD. There are several others that are doing them but these three have the most experience at this time.
The NIH does not charge a fee for those patients they accept into one of their programs. They even pay the transportation expense to Bethesda. I do not know if they would accept a Greek citizen into their program. It does not cost anything to ask.
A SCT is a very serious step. Your mothers doc gave her good advice in telling her not to have one now. Her counts are not that bad! She could lead a fairly normal life for many years if her counts do nor decline. Some caution with exposure to viruses, cold and those who have contagoius diseases would have to be followed. Having periodic check ups to make sure the MDS is not effecting other organs would be a good idea.
Think about it. Don’t rush into any decision. Be patient and explore all of the possibilities.
The progress in treating MDS over the past 18 months has been significant. Hopefully there will be more progress in the future that will reduce the risks of many treatment options.

[fotis]

Thank you all for your answers ! It was great help (the money are A LOT indeed)!

But today we went for a check up with the doctor after 2 months of the previous one. WBC had gone up to 6.8 from 2.3. Doctor asked us to redo the CBC test, and after 4 hours WBC was up to 8.0!!??

Doctor said that all other blood values were ok, and if this was a bad increase it would show on the rest of the results. So doctor was really optimistic.

Has anyone experienced anything similar? Can the increase be good for real, or it just means we are going towards RAEB?

thank you all again.

[Neil]

Do not think you can draw any conclusions from her change in WBC at this soon. Would wait a week or two to see what the count is at that time.
Did they attempt to count them manually to verify the number?
Is there any signs of an infection that would accouny for the increase?
Do not think it indicates a move toward RAEB.
What does her doc think?
Did her doc consult with any other docs?

[fotis]

Her doctor was (or looked) really happy with the result, there is no signs of a possibly infection at the moment. They didnt try to mesure it manually, just did the exams two times with different samples of blood.

She said just to wait 1 month for another exam (and not the usual 2 months).

And a great THANKS to you Neil, you are one that helped me the most. I hope you are doing fine, and i wish the best for you.

[Author]

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