My sister

[QQ]

Dear friends,

My eldest sister is diagnosed with MDS (Myelodysplastic Syndromes) in China 10 days ago and one doctor said that if we could not do bone marrow transplantation for her, she might only live to January next year.

My sister is only 38 years old and she has a 14 year old daughter. Her health situation is good before this although she is not strong.

I did HLA tissue typing test this week and faxed the result to the hospital in China. My elder sister is flying back to China to do the test to see whether there is a match.

Although the current doctor strongly suggests transplantation, two doctors in other hospital recommend chemotherapy. We were also told that even if there is a match, the success probability of marrow transplant is less than 50%.

Does anyone know what the average survival time is for a MDS patient with marrow transplantation? What is the probability to successfully do marrow transplantation in US?

Any suggestion is greatly appreciated. Many thanks.

–A worried brother

[Neil]

There is no good answer to your question.
Each patient has their own set of circumstances that would impact their survival.
Each transplant unit has their own statistics, based on the patients they have conducted transplants.
Would lean more toward researching a stem cell transplant than a BMT. May just be symantics, but SCTs are becoming much more successful.
The class of MDS, the existance of abnormal chromosomes and their significance, her IPSS risk level, and most important does she have a donor that is a perfect match. These are all considerations that when completely evaluated will provide an idea if a transplant is a wise choice.
It is a long involved process.
The progress over the last year or so has been very encouraging. Hopefully the next year will be even better.
You may wish to contact transplant units at M D Anderson in Houston, Fred Hutchinson in Seattle and the Natiomal Institutes for Health in Bethesda, MD for additional information. They are the transplant units that have the most experience with MDS patients. There are other transplant units in the US, that may have done more transplants, but would isolate your search to those who have MDS patient experience. Transplants on patients with other diseases do not necessarily relate. There are units that do very well on NH Lymphoma patients, but that does not correspond to how well they might do on MDS patients.
Check out some of the stem cell transplant web sites. They could have more accurate info and very likely from transplant survivors who would share their experiences.

[Terri]

QQ, Bob was Dx August of 2003, He is still hear, the doctors said he was not a good canditate for any transplants. So he is on Vidaza. Life has changed for us we live one day at a time and bless each and everyone of them. We try and keep a very positive attitute and quite often talk about growing older together. Bob is 61. The initial diagnosis is very scary but a lot of people here can give you help and insite. I depend and am so Thankful for Neil and all of his knowledge

[QQ]

Neil, Bob and Terri,

Thank you so much. My sister was diagnosed as RAEB (or RAEB-T). She has 17% blast cells now. No abnormal Chrom. We will know whether there is a perfect match for her proabably by the end of next week.
She is optimistic so far. We dare not to talk about any survival stuff with her. I will let you know more later.

[patti]

QQ,

I want to share some important information with you regarding my MIL and her RAEB but I can’t do it right at this moment – kids to take care of. Give me a few hours and I will add to this forum.

all the best,

patti

[QQ]

Thank you, Patti. I just learnt that my sister’s IPSS score is 1.1 and what the doctor suggests is stem cell transplant rather than a BMT. Sorry for the confusion.

[patti]

Hi QQ,

Sorry its taken me so long to get back to you. Just got the kids off to bed so now I can focus on other stuff.

My MIL is 75yrs old. In 8/04 she was diagnosed with RAEB-t with greater than 30% blasts. Very nearly leukemia. They gave us a grim prognosis of 4-6 months. We started researching everything we could. The only “treatment” they offered her was chemo. She did not feel like that was an option for her. She felt like it was too toxic. In all of our research we put together a list of supplements that she started taking to try and keep her body healthy as best we could. Twenty months later mom is still here and still doing pretty well. She had a significant increase in her transfusion frequency and was finally at the point where she was being transfused every two weeks. She had also started feeling kind of bad. About 9 months ago we got connected with a cancer naturapath. She just recently sent mom to a chinese medicine man at the college of naturapathy in our town. This man said, “red cells are easy to fix. White cells and platelets a little harder, but it can be done.” Those were his exact words. He told us he had been able to cure several others with MDS. I was very skeptical without knowing what type they had and other info. Nonetheless, we were pretty much willing to try anything. He started mom on chinese herbs and the first thing that happened was that when her two weeks hit and we expected she would need a transfusion, she didn’t! She is continuing to take neupogen shots for her white cells and her platelets remain low right now. But she’s only been on these herbs for 3 weeks and we are already noticing changes. She feels so much better. Her blood pressure in normal again (it was getting very high). And she still doesn’t need a transfusion at this point.

I guess I said all that to say this. The statistics out there on this disease are very outdated. So many new treatments have come into play recently. Your sister is so young. Perhaps a transplant is a good idea. But I would encourage you to research everything you can about a transplant. A failed transplant can leave her much worse off than if she’d not had one at all. From watching others on this board, it seems that those who had transplants AND used some sort of naturapathic medicine to strengthen their bodies faired far better than those who did not. What my MIL is practicing is complimentary medicine. She is using what she can in the least toxic forms medically and using naturapathic medicine to keep her healthy and as strong as possible. Can this chinese medicine heal her? It’s still too soon for us to tell. The guy claims it can. But what it is doing is making her feel better and stronger and we’ve managed many many months beyond what the doctors told us mom had. Your sister is so young and that has such a tremendous bearing on how she’ll will do. I would really encourage her to see a chinese medicine naturapath right now to start helping her body now. Then you can do the research and really determine the best route for her to go medically. I would not recommend any chemo unless she’s doing something to help her body naturally. I can’t stress that enough. Mom’s naturapath (not the chinese one) works specifically with people going through chemo to help their bodies handle it better and be less toxic. That would be the ideal for your sister. And if my MIL goes transfusion free from the chinese herbs, this board will be the first to hear us shout from the mountain tops. There must be good herbal folks in China where she is! We really had to work to find the right people here.

There are some things she can do now that will help her get started. Her diet needs to consist of no sugar or processed foods. Red meat and good proteins are also important. My MIL does what’s called a macrobiotic diet (for the most part). It is essentially whole foods. If you’re interested I can send a list of the supplements my MIL is taking to you. But most importantly, there is hope.

All the best to you and your sister,

Patti

[QQ]

Dear Patti,

Thank you so much!!! I actually was waiting for your reply all day. Thank you again! I will call my brother-in-law immediately of all the tips I got so far. Yes, if you can, please send me a list of the supplements your MIL is taking.

I found this website incidentally last night and already feel the warmth of all the friends here. I will read this forum every day from now and share the experiance here with my sister and family.

I have one small question: I started to read all posts in this forum today. But it looks like I can only read the posts back in page 29 or 30, but could not read posts earlier than that. Do you know how to solve this problem? Thanks!

[Neil]

You may go to the top of this page and click on “search”. Drop down to the box that asks for member number or name. Fill in the appropriate data and it will take you back a year or two. Can’t find another way to access the archives.

[QQ]

Dear Neil,

I tried your method and it still doesn’t work. Basically I cannot read the post contents in the middle of page 29. Thanks anyway.

[patti]

QQ,

I apologize for taking so long to get that last post to you. It will take me a couple of days to get mom’s supplement list together. I homeschool and my daughter will be achievement testing the first three days of this week so I will have a hard time getting the list together right now. I’ll aim to have it to you by Wednesday night if that’s okay.

You will find this forum a haven for information, encouragement and just all around good support. It would be great if your sister could get on it also but I know internet use is limited in China. Nonetheless, it’s great that you are so willing to be a help to her. That’s how it should be.

I’ll get back with you by mid-week. In the meantime, blessings.

Patti

[QQ]

Dear Patti,

Don’t worry. Please only write when you have other things settled down. I believe that it is a long-time battle with the disease.

Internet use is quite common in China now. I told this forum to my elder sister (she is on the plane to China now) and she will check it very often in China.

I am truely grateful to all of you for all the help I got form this forum.

[frank]

QQ,

i came from China, too.

and Frome my experience is the SCT or BMT is a decision from your sister. if you guys have a HLA match, maybe the SCT is a good decision, but if not, the support care is the only option. IPASS 1.1 is not a high score, there are 2 hospital back in china have a good experience for treating MDS patient(tradition herb medicine), but depending people, someone may not have a good result.

make sure what is her type, i bet she only have RARS, or some low risk MDS.

sorry…

Frank

[QQ]

Dear Frank,

Thank you. When I read some old posts here, I found the name of you, Martin and also Zan Li related to China. I have not found some recent emails from Martin. I hope that his wife is better now and I will pray for all the patient friends here.

My eldest sister told me before that her MDS belongs to RAEB-2. But I don’t find this category in the FAB system. Since there is a “transformation” in the chinese name of her MDS, I think that her MDS is RAEB-t.Also from the median survival rate that we were told, it looks like that her MDS is RAEB-t.

She lives in Guangzhou. She was treated in Southern (Nan fang) hospital before and the doctor there suggests CHEMO. One week ago, she moved to No. 1 hospital affiliated with Beijing University. The doctor there suggests SCT. They moved because they were told that the doctor in this hospital has a lot of experience of SCT with MDS patients.

We tend to treat with SCT before we know the low success rate and many side effects. Therefore, we have not decided yet. My elder sister arrived in Beijing five hours ago from Seattle. We should probably know by the end of the week whether there is a HLA match. I hope that both of us will be a match with my eldest sister. So far, my eldest sister believes that with SCT she will be cured and we also encourage her. BTW, Could you tell me the name of the two hospitals in China? Have you considered SCT or are you waiting for a donor? Sorry I ask this to try to know more cases with SCT before we make the final decision.

[QQ]

Dear friends,

Both of my sisters did HLA test yesterday. My eldest sister is having the low-intensity chemo. Her blast level is about 5% now, much lower than before. However, her platelets counts are very low and the doctor is also concerned.

I guess that we should try Patti’s recommendation: fresh pineapple juice and black sesame seed. I also heard that peanut peel can help incerase platelets.

Thanks for all the help. My elder sister will send me more data in a couple of days.

[Author]

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