Loretta's MDS>AML>BMT

[Loretta]

Well, after my 11/06 dx of AML, they tried 2 sessions of chemotherapy. They were not successful, and brought my Leukemia blasts to a low of 11% instead of the 5% goal. So, I went back into the BMT unit (which is now SCT-Stem Cell Transplant) at M.D. Anderson. Although they have never found a perfect match for me they are going ahead with a 48 yo, female mismatch at the A2 antigen. My transplant doctor is trying to do Rituxan and 2 or 3 sessions of apherisis, to calm down my antibodies, so I will be more receptive to the donor cells. My transplant date is April 17, my natural birthday. It's been a long 23 months, filled with ups and downs, new friends, and lost friends. Thank you for your support. Loretta

[choijk]

Hi Loretta,

I have been reading your posts and I just want wish you the best on April 17th! and a happy early birthday too!

I am so sorry to hear that your MDS has progressed to AML. Just as yourself, my dad's MDS has only affected his red blood cells too which makes his hgb low. So far, 3 doctors have found that Vidaza is "reasonable" although my dad does not have any abnormal chromosomes or excess blasts. Most likely, I believe that we will be proceeding with Vidaza in the next month or two. However, based on the doctors' opinions, it apperas that the chances that Vidaza will be working for my dad are really low - about 10 - 15%. However, there is always hope even though I am scared right now because of the possible side effects and I just don't want my dad to suffer.

In your personal story, I noticed that you mentioned a procedure called peripheral stem cell transplant. I tried doing research on this but the the sites I found online were a little difficult to interpret and were not in a lay man's terms. Do you mind sharing what this procedure is about and who may qualify? I'm wondering if I should bring this up to my doctor or not. To my understanding, our doctor advised us that a the donor/transplant route was not an option for us because of my dad's age -- he will be 72 this May.

I'm so sorry that Vidaza ceased to work for you. It was working so well for a period of time. By any chance, does your doctor know why perhaps that it stopped working?

And can you clarify what a BMB is? I apologize, I am still new to all this....

I will be having you in my thoughts and prayers.

With warmest regards,
June Choi

[Neil Cuadra]

Originally Posted by choijk

And can you clarify what a BMB is?

BMB is short for bone marrow biopsy, the diagnostic procedure your dad had a couple of weeks ago. You reported the results in this post.

I suggest that you download a copy of the AA&MDSIF's Myelodysplastic Syndromes Basic Explanations (a 384K PDF file). It gives an overview of all of the MDS basics: symptoms, diagnosis, treatment, blood counts, transfusions, clinical trials, wellness, emotional issues, and more. It has a glossary at the end, but to find abbreviations I find that it's best to search the text in your PDF viewer. Search for "bmb" and up pops "bone marrow biopsy (BMB)" in the Diagnosis section.

Note: Since 2008 a newer MDS guide is available: Your Guide to Understanding MDS (28MB PDF file).

The AA&MDSIF also has an online glossary for common medical words and phrases, but it doesn't include all of the abbreviations.

Since the Basic Explanations document is from 2005, the section on treatment choices doesn't cover developments in the last 2 years, but it's a great starting point for learning your way around all of these abbreviations and phrases.

Originally Posted by choijk

In your personal story, I noticed that you mentioned a procedure called peripheral stem cell transplant. I tried doing research on this but the the sites I found online were a little difficult to interpret and were not in a lay man's terms. Do you mind sharing what this procedure is about and who may qualify? I'm wondering if I should bring this up to my doctor or not. To my understanding, our doctor advised us that a the donor/transplant route was not an option for us because of my dad's age -- he will be 72 this May.

The full name is peripheral blood stem cell transplant (PBSCT). From the same Basic Explanations document:

In peripheral blood stem cell transplants (PBSCT), healthy stem cells are collected from the bloodstream of the donor rather than from the bone marrow and are transfused into the a person with MDS. PBSC transplants are a relatively new approach to the treatment of MDS and are considered a viable alternative for older adults or for people who do not have a suitable matched donor.

[choijk]

Thank you for the links! It is still such an overwheleming experience.

(BMB.... I should have known that one!)

[Loretta]

Originally Posted by choijk

Thank you for the links! It is still such an overwheleming experience.

(BMB.... I should have known that one!)

June, I'm glad Neil gave you those concise answers, because I tend to be a bit wordy. Regarding the Stem Cell Transplant, they used to just do Bone Marrow Transplants but now even though they often refer to them as Bone Marrow Transplants, most of them are now Stem Cell Transplants.
I hope the Vidaza works for your dad. I had no bad side effects. Some people who don't do well on the Vidaza will be put on Dacogen. But your doctors will do what's best for your Dad. Loretta

[cola1988]

I just found this website and am starting to read everyone's posts in an attempt to know your stories as well as ours. My daughter Alicia was diagnosed with ITP in April 06, AA in July of 06 and this progressed to MDS in Nov 06. She had her bone marrow transplant on 1/13/07 and is currently doing great. I am sorry to hear your has progressed to AML. We are fortunate in the fact her brother was a 10/10 match and the transplant was our only viable option for treatment. I wish you the best of luck and look forward to talking to you again. Happy Birthday, a little early, and God Bless, Nicole Garen

[John R]

Hi Loretta,

I've been keeping up with your story. Wish you the best as you approach the 17th. The Lord is always with you.

John

[Harold P]

I am so sorry to hear that the Vidaza is no longer working for you. My husband (60 yrs old) was recently diagnosed with a secondary MDS, which has a very poor prognosis due to chromosome abnormalities. He is supposed to start on Vidaza & Procrit when he sees his Oncology/Hematology doctor here in Des Moines, IA on Tuesday, 4/8/08. We are going to the Mayo Clinic in Rochester, MN on 4/21/08 to talk to the transplant doctor to see if my husband is a good candidate for a SCT. His diagnosis means his MDS is an aggressive kind which will progress to AML. Please keep us informed as to how things are going & what kind of treatment the doctors decide to try next. Stay stong. We will keep you in our thoughts & prayers.

Sincerely,
Sandy & Pete Peterson

[Ruth Cuadra]

Sandy and Pete,

I posted in another thread about Loretta's death in June 2007, but did not think to put a link to that post here. I'm sure Loretta, whom I had the pleasure of meeting in person, would have thanked you for your kind words of encouragement.

Ruth

[Harold P]

Ruth, thanks for letting me know. I wasn't paying attention to the date before I posted my message.

I also read about the post from Loretta about Dennis not making it through the transplant. Do you happen to know how old he was & what his diagnosis was? Thanks.

Sandy

[Ruth Cuadra]

Sandy,

I know that Dennis had MDS, but not how old he was. He was the first poster at Marrowforums when the site opened in 2006 and you can read his thread here.

Ruth

[Harold P]

Ruth,
Thanks for the information & thread regarding Dennis. It is very sad that he didn't make it through the transplant.

Sandy Peterson