Good News Today: Keep The Hope

I just wanted to share some good news that might give hope to anyone who is or has a loved one with "High Risk" Myeloma, including any genetic deletions or chromosomal translocations.

My father has every one of the "poor prognosis" signs, but he remains in remission after receiving his four cycles of Velcade+Cyclophosphamide+Dexamethasone.

So he has been in "near complete remission" for three plus months now.  I was really worried because his doctor was unusually silent about his condition during the last meeting, and put him on Rev plus Dex.  My worst fear was that he was having a progression and was being pulled off this clinical trial.  

I guess the message is never give up, never give up hope.   These new meds are truly helping, even in cases like my father's.   He was told up front that his situation was dire.

This was a real lesson to me to keep my chin up and just visualize a future where my father and I are working together as we always have.  It was hard to do that for a couple of weeks, after learning about his genetic situation, but I'm going to just do my best to keep going forward.  

I know it's hard sometimes, but try to keep hope alive, because MM treatment is changing quickly.

Hugs to all of you.

Hi MCrow,

Great news!!  We must all keep the hope.  Best wishes to you and your family.  The cure is coming, I know it is.

Jan

Hey Mike, DebJr. here again... GREAT NEWS!!  See, there really IS hope, so you just have to give in a little and hang on to it...

What an amazing turnaround... just last weekend everything seemed so down for your dad and now look. It actually gives me a little more hope too, since as you know my dad's case is similar to yours. I also wanted to ask you - i am not familiar with the 'Cyclophosphamide'. Is that something new, or part of the clinical trial you spoke of?

Also, regarding the Velcade and then the Revlamid... do you know how about many cycles one might have for Velcade? (if it is working) My dad is nearing the end of his third Velcade cycle. He was also taking the Dex steriods on & off while taking the Velcade, but no longer take the Dex. Last time we were there, his latest IGA was 119 [good is anywhere 70 to 400] - and the doctor said he was still doing very well and that we would just continue what we were doing. But i forgot to ask her if he will stop the Velcade eventually or do they just keep doing it until it doesn't work anymore. And, do you know it Revlamid is very expensive and unafforable to most... like Thalidomide? (we briefly experienced that problem, but then thank god it turned out not to be a problem).

Mike, i also wrote you back on my recent post of 'Velcade & Diarreah, etc'...thanks for your replies.

Enjoy your good news & good faith!

On 4/12/2008 MCrow wrote:

I just wanted to share some good news that might give hope to anyone who is or has a loved one with "High Risk" Myeloma, including any genetic deletions or chromosomal translocations.

My father has every one of the "poor prognosis" signs, but he remains in remission after receiving his four cycles of Velcade+Cyclophosphamide+Dexamethasone.

So he has been in "near complete remission" for three plus months now.  I was really worried because his doctor was unusually silent about his condition during the last meeting, and put him on Rev plus Dex.  My worst fear was that he was having a progression and was being pulled off this clinical trial.  

I guess the message is never give up, never give up hope.   These new meds are truly helping, even in cases like my father's.   He was told up front that his situation was dire.

This was a real lesson to me to keep my chin up and just visualize a future where my father and I are working together as we always have.  It was hard to do that for a couple of weeks, after learning about his genetic situation, but I'm going to just do my best to keep going forward.  

I know it's hard sometimes, but try to keep hope alive, because MM treatment is changing quickly.

Hugs to all of you.

From Anna,

 Hi MCrow, That is great news.  Dad has trouble with blood clots so that's been on our minds since he's doing Rev and Dex now. 

 Your friend,

 Anna