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[Lyle D]

Dx with MDS and take weekly infusions of Aranesp. Hemoglobins keep dropping.
What is the next normal course of action?
Lyle D

[bailie]

Sorry for the news. If you are like most of us it is a real shocker when they start talking MDS. I had no idea what it was. What are your other blood counts? Have you had a bone marrow biopsy? Blast count? Age?

For me it was straight to Vidaza and next will be "mini" stem cell transplant.

[Caregive]

Welcome to the site. People here are really helpful and knowledgeable. Keep good notes and get copies of all tests, read nonstop till you figure your own situation out. You may live near where there is a support group. Your age, what other health situations you have makes a difference on how your treatment goes. Keep us posted.

[newfintexas]

Hi Lyle- Welcome to the forum. Please feel free to ask any questions. This is one place I found honest answers. My advice is find out anything and everything about your MDS. Everyone is different. My hubby was diagnosed June 29, 2012. Once he had the initial bone marrow biopsy they put him on Dicidobene (oh, I know I spelt that wrong haha), his only symptom at the time was shortness of breath. His hemoglobin was 4.2 - yup they couldn't believe he drove himself to his doctor, rushed him through emergency right away - and the rest is as they say, history.

He is 58, had a bone marrow transplant with a 10/10 match Nov 14, 2012 when the chemo treatments were not working for him. He was very lucky with very little if any, gvhd - although in hindsight we wish he had had perhaps a little more to show there was a fight going on in the marrow, but as it was we had a great 9 months, had just gotten the ok to finally head out of town for a vacation and on the day we were leaving - had everything packed to go - we got the call - to come to see his bmt doctor right away - he had a relapse (Aug 2013) and his blasts were much higher 21% which puts him in the AML category. He has been on Vidaza since and back to the multiple transfusions but is also fighting with DLI.

His donor gave so many extra stem cells that the doctor has been giving him transfusions, more each time, every two months with the last dose being the same size as a full transplant without the chemo etc that goes with the transplant. We have a biopsy coming up next week to see how things look, but from what we have seen so far, there has not been any change really since Aug so we are hoping something is going on we haven't been able to see. If no marked change, we may be looking at a second bone marrow transplant.

Ask your doctor to write down what your diagnosis is, I say that because there are things going on with your chromosomes, blast counts etc that is all so new and so easy to confuse and forget. Then get a print of all your test results as they occur, keep a diary of your treatments etc so you have it all to look back on or go back to if needed.

It's a huge stressful piece of news to get but know that we are here and like I said feel free to ask any questions you might have ok? There are many of us here that have either been where you are, or are caring for someone who is.

Don't hesitate to reach out....we all need that from time to time for sure.

Take care of you...
Laura

[DanL]

Lyle,

Welcome to the forums, wish we could meet a different way. After Aranesp, you usually start working with your doctor to come up with a plan that may start with various forms of chemotherapy depending on what your bone marrow biopsy tells them - maybe Vidaza, maybe Revlimid, or some other drug under a clinical trial. Depending on how quickly your disease is changing, and depending on your health, a transplant may be in order as well.

Unfortunately, there is not a cookie cutter next step as MDS has multiple treatment paths depending on age, disease status, chromosome changes, overall health, and whether or not clinical trials are showing effectiveness for your particular classification of MDS.

[Lyle D]

Thanks everyone. I am 77, WBC 6.0, RBC 3.49, Hgb 9.2 and Plt 80

[Heather8773]

Lyle I'm sorry you are going through this it's a scary thing most of all at dx. Good news is you have a dx now so you know what your fighting!
Laura you guys have had such a tough time!!! I admire your strength and positivity!! Keep it up girl!!! I hope that things start getting better soon!

[barbara a]

Welcome Lyle to our conversation streaming!! The people that are members of the group are great- we share questions, concerns, information and offer each other support.

I am a widow of a VietNam veteran who was diagnosed with AA/MDS at age 44. for the past 3 years I have been researching these diseases and their connection to Agent Orange exposure in order to present ample data to the Federal Government to include them on the "accepted illness" list or at least to order scientific studies. The support from the Forum's members helps me to sustain my persistence.

You are not alone and should never feel that way. Keep communicating speaking for myself I am glad you have joined us.
Barbara a

[Cheryl C]

Hi Lyle - I found this report very interesting and helpful: http://www.sciencedaily.com/releases...0624173242.htm

[Peachy]

Hello Lyle - We also live in Colorado and have appointment with CBCI in Denver tomorrow, as we are considering a SCT. My husband just turned 69. He was diagnosed with MDS in 2012. Unfortunately it turned to AML with 35% blasts in December 2013. He is now home, blasts reduced to 2% with induction chemo.

My best thought is have a doctor you trust with your best interests in mind. One that will answer all your questions without hesitation and give you all the facts. MDS is a roller coaster. This site is very helpful and at times gives you more information than you can take in all at once, but that's a good thing. I also suggest that you take someone with you to your appointments as we all hear different things. My husband calls me the scribe, as I write everything down so we make sure to remember all topics covered.

CherylC - thanks for the link to the Dana Farber report. It is close to what the doctor told us. Statistics are only a representation of what can/has happened. But since my husband almost didn't survive the induction chemo the stats weigh heavily on our mind.

[Peachy]

Sorry Lyle - Mixed my answer after reading 2 posts. My comments about finding a doctor you trust remains. Sorry for the confusion- sometimes just too much in my head! Peachy