I know someone can help!

[mdsmom]

Our safe world lasted a little over 1 year. On Jan. 16, 2004 our 23 yr. old daughter was diagnosed with high risk MDS (RAEB). We stayed in Houston while she entered the DCTER protocol of treatment at MD Anderson. She went through 3 sessions of chemo, 1st remission achieved after completing #1 chemo session in isolation. We came home just before her 24th birthday in May and her recovery has been steady and complete, all blood counts normal. Last week out of the blue her platelets fell to 76K on Wednesday, and by the time we saw her oncologist on Fri. they were at 54K. Our girl is a single mother of a 2 yr. old, hard worker in a local hospital ER. We are devastated. I guess she is one of very few young adult women with this heartbreaking disease, I search the website forums for someone similar to no avail. Please help me if you can. MD Anderson did BM donor search and located 2 perfect matches, but I feel like it’s a last resort.

[mkazi]

I can only suggest that you Pray to God for his mercy. I have a Mom with MDS and she is on a bumpy road. her counts keeping going up and down.

I feel alone, confused and with so much information do not know what is best.

However, if this makes sense, please try to get your daughter to fight the disease MENTALLY, ie think always ” I AM FINE AND I AM GETTING BETTER”

I know it is very easy to say than practice but with faith and determination miracles can happen.

God bless you.

[Suzanne]

I know how you feel about the transplant. When you read about it, the process is really scary. But they have made so much progress in the past couple of years. She is so young and because of that she has a much better chance for success then we “mature” people. Unless there are other complicating factors, I think I would head that way if they can get her into remission again. Another alternative might be trying the trial of Zarnestra as a maintenance drug. There were some trials for people who had relapsed once but I don’t know if they have had much success there. Because I wake up every day with that fear of relapse in the back of my mind I can imagine how you all must feel. All they have told me is that there are some alternatives-but not many. Suzanne

[Terri]

It is a hard decision but your daughter is young and as Suzanne said they have made such progress with BMT, I send you my blessings that all goes well and will add your family to my prayers

[frank]

As a young child father, i think the best way is maitaining first, if there are any chance to survive, try that way first, less dangerous. BMT should be the last try… Also you should consider the health condition of her, if the health is going done quickly, do the BMT ASAP.

sorry, our suggestion cannot give the real help, she have to make decision herself.

Frank

[Suzanne]

Frank, You are right. She has to make the decision herself. What does Duke recommend?

[frank]

Suzanne,
thank you for asking.

i havn’t had chance to be in Duke, i am on Vidaza right now, and i think i may have to do the Duke things soon.
i start the vidaza 1 month ago(since i felt my health is good enough, and after spring time, no flu; my twins are little better now), i really want to see some result from it. It was recommanded from JHU and my doctors, but somehow i do feel maybe i should wait(until the twin are 2 years old). the result from it was not so good, just like what i said, since i have two little girls, and i am the premire care-giver, it will be a real difficult for us to handle the case if i have to stay in hospital often. Hope it really help me…

i asked for the vidaza’s responce rate for RARS patients in other post, no body responce currently…

Frank

[sarah]

mdsmom, those 2 perfect matches are an answer to prayer. Your daughter is young and if there is a possiblility of a cure for her with a BMT I would certainly consider it. My husband was dxd at the age of 49 with RAEB. Search has been ongoing for match since 2001. Nothing to date has even come close. I pray your daughter is able to make the decision that is best for her.
Take care,
Sarah

[Kathryn]

Hi, I can only imagine how difficult this must be and I just wanted to let you know that your daughter is in my prayers.

With best wishes,

Kathryn

[Suzanne]

Frank, I know you aren’t sure what you should be doing. If I were you I would stick with the vidaza long enough to give it a chance to work.My understanding is that it can take more then one round to begin to work. I am wishing you the best so you can see your twins grow up.
I was asking MDsmom what Duke recommended for her daughter since her daughter had been a patient there for her initial treatment.

[mdsmom]

All of you are wonderful and kind. Isn’t it amazing how we have to adjust to not being in control. Keelyn was treated initially at MD Anderson and this morning I have emailed her oncologist here in Austin at the Southwest Regional Cancer Center and her doctor at Anderson. And guess what? MD Anderson answered within 60 minutes! She has received such heartfelt care I believe because her doctors look at her and see their own child. We have been so blessed with caring and concerned clinicians and friends. We’ll forge ahead and save her again.

[Suzanne]

mdsmom, Sorry, I had my places mixed up. MD Anderson has a great reputation. My doctors at Hopkins usually answer me very quicky by email too. It is a wonderful thing to feel that you have knowledgable doctors taking a personal interest in your welfare. Wishing good luck to Keelyn!

[mdsmom]

The blood counts are up!!!!!!! And all by themselves. Not alot,(platelets still less than half normal, wbc over 3) but WBC and platelets UP!!!! I think I’ll sleep tonight. Another draw on Thurs. Hoping for UP,UP,UP
In reading some of your profiles, I notice that one of the common threads is maintenance drugs. Keelyn has taken nothing except iron tablets since last year. Is this unusual? Maybe because she’s so young?

You all made us feel better. Frank, have you ever checked out LifeMosaic.com? We have felt so all alone through this wondering why Keelyn is ill with a disease that young people just don’t have. I stumbled on that website last night and read about several young women. Another great site is PlanetCancer.com.
I will pray for all of you. Everyday we wake up to struggle again is a good day.

[sarah]

Wonderful news. Hope they continue to go up!

[Suzanne]

No , not unusual for her not to have taken anything. most people don’t. They never have found a maintenance drug that had any evidence of working. I read somewhere that they had not even had any trials for that purpose in over 10 years. Zarnestra is the first in a long time. I believe it is a multicenter study but there is still a very small # who have tried it & they tell me it will be a long time before they have enough statistics to know for sure whether it helps but the preliminary results are promising. If you want to investigate it for her, the head of the study is at Hopkins. Dr. Judy Karp. Her research nurse is Jackie Greer jgreer6@jhmi.edu 410-614-1329. I believe your daughters bone marrow biopsy will have to show remission before she can qualify. The study I did was for people in remission from the 1st round of chemo but I believe there is one now for patients who are in remission after a relapse. Check with Jackie

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