Good evening Linda, Sally and kgtuck,

Thank you Linda, I know you and Al have been through a lot recently with your last oncologist, and now you have found a doctor that will work with you and Moffitt. Your outcome gives us hope that Dean and I will also find a doctor that will take the time to answer our concerns and fears.

We are going to call Moffitt and ask for a referral to a doctor in the Clearwater area, one that works with them. I feel better having a doctor nearby, even though Tampa isn't that far away, if Dean had to go in the hospital, it would be a very long drive everyday. We would feel better having a doctor in our area that will also work with Moffitt, if we ever have to contact them in the future.

kgtuck, thank you for explaining to me that you are still receiving Dacogen, and it is working for you. I don't like the idea of the doctor saying Dean is in remission and he doesn't have to continue on Dacogen, that worries me.

When Dean was first diagnosed, the doctor said Dean would be getting Dacogen and also be taking Revlimid. Now the doctor says Dean will no longer need to be receiving Dacogen, and he will just take Revlimid. I should add, that Dean has not started Revlimid to date, we have been trying to get it through the company since we do not have Medicare Part D. We have been approved and it should be delivered tomorrow. We have no idea if Dean will do well on Revlimid, yet we know he has done fine with Dacogen. :confused:

Two months ago we were told Dean had RAEB-t, 17% blasts. His blood counts were terribly low. WBC 1.1, RBC 2.9, HGB 10, and PLT 24. On Friday his blood counts were: WBC 6.0, RBC 3.1, HGB 9.7 and PLT 180. This is after only two cycles of Dacogen, so the doctor is saying these numbers show Dean is in remission. Something just doesn't feel right.

Three weeks ago Dean was in the hospital, his WBC was 0.3 and his PLT 3. Last week during treatment Dean said he felt a little less weak, but yesterday and tonight he is shaking, is very weak and just wants to sleep. It will be interesting to see what the blood counts are on Tuesday. I know we should be celebrating, but I guess the doctor being so sure about Dean being in remission has us concerned. We keep thinking, shouldn't that be based on a BMB, not the blood counts? :confused:

Hi Sally, you can hijack this thread anytime. You are so supportive and caring, always calling and checking to see how we are doing. I know I must drive you crazy with my questions, but you don't give up on me, you give me advice and cheer us on. Thank you so much. I hope you find an answer to your question on this thread. I sure wish I could help you as much as you have helped Dean and I through the last six weeks.

God Bless and hugs to each of you. Thank you for all the great advice, support, and kind words! Good luck to each of you as you also are dealing with so much in your lives.

Patti....hang tight till you find out what chromosome is involved...if it is Q5 then the Revlimid might be the drug...and that you will not know till Tues.

My husband's counts all came up like Dean's after the 2nd set of Vidaza and was trans. free for 6 months and had injections every 21 days and was considered in remission, it was explained to us the same way Brigitta explained. My husband was Q7 plus he had Myelofibrosis as well as MDS but he never had high blasts.

Then the Vidaza stopped working.

Just relax till Tues....take ALL your notes to the DR. and just tell him in your best Sunday manner, to explain 'cause all of your "new" family needs to know.

No minds ever think alike it is the same with MDS no one is the same as the next.

I have a feeling of what your Dr. is trying to do but it is just a gut feeling.

Good morning Slip Up 2,

I now know, by many of the posts from everyone, that Dean and I do have to question the doctor about the BMB results. His doctor has never given us any information about that. We have never been told if any or what chromosome is involved.

I am learning more and more each day from the posts on this forum, that like you say, MDS is different for everyone, no one seems to respond in the same way.

What happened after the Vidaza stopped working for your husband? :( Do the doctors try another treatment? One minute everything seems so right, and then the next, everything is so wrong, that has to be so very difficult.

I will definitely let "my family" on the forums know what happens on Tuesday. I have learned so much from each of you. Each of you give Dean and I hope, faith, support and the strength to keep fighting.

Thank you again slip us 2. By the way, please give me a hint, what do you think the doctor may be trying to do? :confused: It may put my mind at ease. It is okay if it is just a gut feeling!

Good Luck with the Dr. Appointment
 

Patti;
Remember - YOU ARE ENTITLED TO A COPY OF ALL OF YOUR RESULTS !!!! Do you have a good rapor with the Docs receptionist or nurse? If so, in your best demure voice (the one that acts like she is so needy, but in reality is very strong) ask them for a copy of all of Dean's records.
I know at our hospital - when they get Earl's labs in - I can call one partiular person and know the results sometimes even before the Dr. does. Too - if he goes in for a transfusion - we know all of the nurses, and they are great. The ask me if I want a new recipe they have tried - and of course I say yes - and I get a copy of 'it' and I am sure you know what I mean.
I know you don't want to drive to Tampa, but I think it might be a good idea to get established there. I am sure they have Docs who work with them in your area, but sometimes it takes a long time to even get an appointment. But once you are considered a 'patient' the wait time is not near as long. We saw Dr. Jeff Lancet there - and when we saw Dr. Sekeres in Cleveland, he was looking through all of the paperwork I had assembled, and when he came to the page that had Dr. Lancet's business card, he smiled and said her didn't need that page - that the had Dr. Lancet's home phone and cell phone. Both Dr.'s are supposed to be well known in the MDS field, and I know Dr. Sekeres is on the board of the AA/MDS Foundation.
Take care, and let your extended family know what it happening.

((((HGUS))))

Beth

Promacta
 

Hi Sally,
You asked if Promacta (Eltrombopag) could have long term effect in MDS patients. As you know the drug isn't approved for MDS and we have hardly seen results from studies lasting a few months and nothing about this kind of effect.

I have read one abstract about a patient with Immune Thrombocytopenic Purpura (ITP) who continued to respond 8 months after the drug was stopped.

Then there is a trial called "Observing for Cure in Patients With Chronic ITP"
http://clinicaltrials.gov/ct2/show/N...mbopag&rank=60.

We hope that Don's platelets and other counts will continue to be OK!
Kind regards
Birgitta-A

Thank you so much for this information Birgitta - and the well wishes.
God Bless,
Sally

Unfortunately we don't know any of the receptionists or nurses real well, they are all nice, but very busy. I do wish we knew them better.

Dean was suppose to go to our local VA office on Wednesday to find out about getting his medications through them, he already receives two prescriptions through the VA. Today the VA called and told Dean that he would be going to the VA hospital in St. Petersburg instead and see their oncologist, the date was changed to August 20.

We figure that is a good reason to ask for the BMB results when we see the doctor tomorrow, and ask the doctor to answer our questions so we will be prepared. Hope that will work. We aren't changing to the VA, just need to go through the hoops to get Dean's medication (Revlimid), we have to follow the VA rules, have to see their oncologist.

Dean was feeling a little better over the week end, but late yesterday and today he is exhausted and very weak again. He has been sitting in his recliner all day, sleeping off and on.

I agree with you that we have to contact Moffitt, I do want to call and ask about a doctor in our area, but I also want to ask about making an appointment with them. Not enough hours in the day, and so much to do sometimes.

Tomorrow Dean sees his cardiologist in the morning, then his oncologist. It will be a busy day. :)

Thank you Beth for all your help and suggestions! I know you are dealing with a lot and I appreciate that you take the time to help. Have a nice evening. I will let you know what happens tomorrow. I have to practice my demure voice! :D