Out of remission

[Naomi]

Hello to all:
I have not written for quite some time, as things were going very well for me for two and a half years.
I have not been having a good time lately. This all started in May when I got c-diff. Took flagyl to get rid of it. Worked, but returned in July. More flagyl. Seems okay now. Also got cellulitis and was taking two different antibotics at the same time.
Platelets started to fall. Had to go off revlimid, as the protocol calls for certain criteria on counts of all lines. Had a bmb and found blasts which I did not have before and out of remission. Blasts not high, but still there. Have had 4 platelet txs and then the red counts fell and had to have two units of red cells. Today the platelets are once again low–<12, so tomorrow another platelet tx is scheduled. I need to get the platelets up in order to have some knee surgery
Doc got special permission to continue my revlimid and bumped it up to 15 mg daily to try to get me into remission once again.
I have been on revlimid since 11/03 and my last tx was 12/03, so it is a real drag to have to have txs once again.
Hopefully since I have gotten the diarrhea under control, the revlimid will have a chance to work and get me back into remission.
I keep all of you in my prayers
Naomi

[Suzanne]

Naomi, You are one of the stars that keep the rest of us going. Hang in there. You have hopes and prayers from all I am sure.

[stacey]

Naomi,
I’m sorry to hear there have been a few more health issues lately that you have had to deal with. I hope things start going better for you and you can get back into remission very soon on the revlimid.
I have a couple questions (if you don’t mind) to clarify what you wrote, because I tend to learn quite a bit from your experiences. Did you go off the revlimid in mid July? And approx. what was your hemoglobin count when you went off the revlimid — was it already lower along with your platelet level OR was it still normal, then suddenly dropped after you went off the revlimid requiring your two RBC transfusions due to the anemia? I was trying to figure out if the anemia was a direct result of your stopping the revlimid and, if so, about how soon after it showed up. Thanks for the info.
Best wishes,
-Stacey

[franm]

Naomi:

So sorry to hear about all you are going through. My husband was dix with MDS in 05 and started Vidaza 3 months ago. His CBC’s have been pretty good except for the 1st session of Vidaza, when he ending up in ER and then a hospital stay of 1 week with an infection. His BMB was 29, so the Oncologist started him on a very aggresive dose of Vidaza…for that reason he ended up in the hospital.

She lowered his Vidaza by 25%. Since then his Blood count has been much better. Saw the doc today and she said that if she stopped the Vidaza now, his blood count would go up and that is bad. WBC: 3.8 RBC: 3.92 RDW: 16.0. That was his last blood count as of 08/28.

Good luck and hope to heargood news from you soon.

Fran

[shirlsgirl]

Hi Naomi,

I’m sorry to read about your setback. Hoping that the increased dose of Revlimid will get you back into remission. Hang in there, things will get better.

Take care,

Jody

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