Why Not SCT or BMT?
 

I have read many of your post and they are inspiring. It's amazing how strong each of you are during this horrible disease.
My brother was diagnosed with MDS. His blast were 14% (BMB). Hemoglobin has not been above 9 since August of 2013. It stays between 6 and 8.
My brother's doctor keeps doing BMB to see if it has transformed in to Leukemia. He told us that once it does he will be in the hospital for about 6 weeks for chemo. I asked if he would get a SCT or BMT and he said no just chemo.
I don't understand this, as most of you seem to be either waiting for or have had SCT or BMT.
My brother has good weeks and bad weeks. He is only 49 years old so I would think he would be a candidate for transplant.
Any ideas why only chemo?
Thank you for any help you can give me. It's so painful to see him this way and I know my pain is nothing compared to his.
By the way, the only thing they have told us is "high grade MDS" I have copied all his medical records but they are pretty hard to interpret.

SCT
 

Hi SherryS,
You have probably already read what the specialists write about MDS treatment. A patient 49 yo with high risk MDS (blasts between 5 and 19%) could have a SCT if there are no other reasons to not perform a SCT.

Your brother should try to get a second opinion. There are list of the best MDS clinics if you look at Marrowforum's homepage.

Good luck!
Kind regards
Birgitta-A

Thank you Brigitta, I will look at the list. My father passed away from bladder cancer and we started with a doctor in Oklahoma. We decided to switch to MD Anderson and the doctor here didn't treat us the same after. I felt like he didn't want MD Anderson telling him what to do.
My brother is in such a bad place right now, it's almost like the doctor is our security blanket.
I'm starting to lose faith in him tho.
Thanks again for your help.

I'm sorry Birgitta, I spelled your name wrong in the last post.

SherryS,

You said, "I asked if he would get a SCT or BMT and he said no just chemo."

When you asked the doctor why your brother could not get a SCT or BMT, what did he say?

Not everyone can get bmt or sct due to age, other illnesses and other reasons. It's complicated. My husband couldn't tolerate the lead up to part so he gets transfusions every three or four weeks and Exjade for chelating the iron out of him which he acquires from the donors. So far so good. And I really really focus on diet, leaving out gluten at home anyway, milk no, little meat at home, low salt so as to maximize the possibilities for his health. Also in his case supplements of B12 and folate. I try to talk him into going for walks too. Oh, and drink lots of water.

Read as much as you can on solid sites and always go to the doc with a list of questions. Also feel free to request referal for a second opinion. We got refered to Fred Hutchinson hospital in Seattle. All you info has to go there ahead and it's darn timeconsuming but you'll get in and again have your questions ready for whoever sees you.

Thank you for your help. My brother was admitted to the hospital Monday with enlarged liver and spleen. He needs about 4 units of blood a WEEK, one time he went 4 weeks with no blood....I think he has had about 40 units since last October. I just noticed in his doctor's notes that in December he had "increased iron absorption". The doctor has not even discussed chelation treatment. How do we know when chelation treatments are needed? The doctor told us he was going to refer us to OU medical center to see if there are any clinical trials he can participate in. He has had 5 Vidasa treatments. Procrit every week and 1 month of Revlimid. His blasts are high but not at Leukemia.

Hi Bailie,
He just said no it would be just chemo. I don't know if its because he has Medicare....I was surprised but did ask if it would be better if it went into Leukemia and had the chemo. he said no because the bone marrow would be so diseased.

Chelating treatment
 

Hi SherryS,
Your brother seems to have an agressive disease. For the moment iron overload is not the most important issue. Hope he will respond to Vidaza - most doctors try at least 6 cycles.

Good idea with a clinical trial. You could look at the clin trial gov site.
Kind regards
Birgitta-A