MDS and far away from USA

[Mildred]

Hello everybody, I just want to thank God for all of you. I was reading your posts since one month ago. Since my native language is spanish and I don’t speak english very fluently, I decided to read not to post any message.

My mother (68 yrs) was dx MDS on november 05 and according to our last local doc she had progressed to AML in Jan 06. I know you can understand my feelings right now. We live in Dominican Republic (Caribbean) and we have an appointment on next wed in Mayo Clinic (Jacksonville).

I want to say thank you to all of you. You make me feel that I am not alone with this.

My mom’s type of MDS (in november) was refractory anemia with excess of blasts (7.7% blasts), now another doc says she have AML with 30% blasts in her bone marrow. Could this progress so quickly?, she is very fine, doing all her usual daily activities.

I am sorry for my english.
Thank you

[Suzanne]

Your English is extremely good so don’t worry about that. Yes it can progress quickly and unexpectedly. It did for me tooand I also had very few symptoms. But when it did progress, the treatments suggested by the center of excellence for MDS and AML that had been treating me were successful for me. We will hope the same is true for your Mom. I will say that my AML was discovered by NIH-another center of excellence with a good reputation that I had gone to to look at a drug trial.I was a very high risk case and they did not think anything would work and said they could not find any treatment anywhere to recommend. If by chance you get that answer you might want to consider a second opinion. I am very thankful that the Doctors at Johns Hopkins that had been watching me for a year did not agree and recommended agressive chemo therapy. Because of them I am still enjoying life! Good luck to your Mom.

[lynette]

Hi and Welcome. As with Suzanne, my Mom progressed to AML quickly, within 3months, while on oral Chemo. Other than feeling fatigued, she had few other symptoms. I agree that it is so important to go to a Center of Excellence. My Mom’s local hem/onc doctor doesn’t treat MDS. Luckily she referred her to New York Presbyterian. The only thing that her local doctor could offer was a promise that she would make her comfortable. Instead, she is in remission. Good luck with your Mom, and ask as many questions as you deem necessary.

[Mildred]

Hi Suzanne and Lynette, thanks for responding.
what about the side effects of the chemo? have you heard something about Mayo Clinic?
Thanks for your help and God bless you.

[lynette]

Hi Mildred
My Mom had nausea, but not intense. She also experienced fatigue and numbness in her fingers and toes. Thankfully side effects subside once off chemo
Lynette

[Suzanne]

Mildred, I was kept in the hospital for about 30 days for each of the two rounds of “heavy” chemo I had-The chemo itself was only about a week but they would not let me out until my counts recovered to a level high enough so I was not in so much danger. They did a great job of controling side effectsand infection problems with drugs and the second round they cleaned out my whole digestive system first by not feeding me.Believe it or not I did not feel hungry and felt much better that way.(food tasted awful during chemo anyway) The Zarnestra I took for a year after had almost no side effects. Be careful about what people mean when they use the word “chemo”-taking any chemical can be referred to as that and often is. There is a big difference in taking a pill every morning or going in for a shot once a week and the chemicals they give you in the hospital that are referrd to as “induction chemo” and “consolidation chemo”. Mayo clinics are certainly a known name. I think I have read post of people treated in one in NY. I don’t know if there is a difference in experience with MDS in the clinics in different locations. Check with the staff at the AA & MDS International Foundation. http://www.aamds.org

[Mildred]

Well, we are in Jacksonville. Doctor at Mayo Clinic is excellent, Mom was admitted to the hospital for platelets and blood transfusions.

Platelets transfusion was awful due an adverse reaction. She lost vision, nausea, vomiting, very low pressure, was a scaring thing, very scaring.

Now we are out of the hospital. Tomorrow they will do a bone marrow aspiration. They are trying to see if she can qualify for a clinical trial with ara-c.

Thanks for your help.
Mildred

[Suzanne]

If you are in Florida you might want to get a second opinion from Dr. List. He is extremely well known for research and treatment of MDS. For the moment the name of where he is excapes me-someone will post it and how to reach him I am sure.

[sugarwhale]

Dear Mildred and Suzanne,
Dr. List is at Moffitt Institute in Tampa, Florida. He’s the best (except for our wonderful doctor here in Albuquerque! Ha!).
~~~ Janet

[Mildred]

Thanks Suzanne and Janet,
We have our second appointment tomorrow with Dr. Moreno in Mayo Clinic. The results of the BMB will be ready in a few days. Is the Moffit Institute a center of excellence for MDS?
Just God knows how hard is this for us. Maybe today she needs a platelets transfusion again. Maybe is because she had lost blood in the biopsy and the blood tests..

Does that make sense?

God Bless all of you
Mildred

[Suzanne]

Yes, Moffit is a Center of Excellence and Dr. List is one of the best known Doctors working with this disease. He moved to Florida not too long ago from another clinic. I believe he was coordinator of the studies for the recently approived durg Revlimid.

[Mildred]

Please help me. BMB results were 15% blasts in her bone marrow and all abnormal cromosomes (trisomy 8) a very high risk RAEB II, not yet leukemia. This trial in the New York Prebysterian is still recruiting patients?
any trial in the Moffit Center?
Doc says maybe Prednisone can boost her platelets.

I really, really need your help..thanks

[lynette]

Hi Mildred,
My Mom is a patient at NYP presently taking part in a clinical trial with ARA-C and Trisenox(arsenic). She went into remission with 2 cycles(total 4 weeks in weeks in hospital). She is now on maintenance. This involves one week of outpatient medication, and 3-4 weeks off.
My Mom had 40% blasts when she started, and it helped her. She’s 74, but no other medical problems.
Prednisone may affect platelets, but long term- has many unfavorable side effects.
Get all the facts so that you are able to make an informed decision.
Lynette

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