Frustrated in San Jose
 

Hi all!
I am a 67 year old male, have been dignosed with MDS 5q since 2003. Things stated "acting up" 18 months ago. Revlemed worked for 10 months and my situation has been hit or miss since. the latest was a 3 day infusion of Dacogen which only beat me further up. My counts are fairly low. On a cruise to Alaska last week, I had to get off the ship in Juneau after 4 days and fly home to get a RBC infusion. My WBC is at 1.0 so i got a shot of Newlasta last week.
I'm not going to bore you with further detalis of my CBC.
The doctor that I liked and have been working with for the last few years left 2 weeks ago, and while they are negotiating with an replacement, they brought in a temporary doctor. Understandably, the temp DR. only treats the symptoms and hopefully the new permanent doc will deal more aggressivly with a treatment plan.
I've had 4 transfusions so far, over a span of 8 months.
Bottom line, My family and I are frustrated. We are sitting on a powderkeg.
Some encouraging words from people that are dealing with similar issues would be appreciated.
Mike:)

Hi Mike. You've got plenty of reasons to be frustrated: having Revlimid stop working, no luck with Dacogen, low counts and transfusions, a vacation cut short, your doctor leaving, not to mention having MDS in the first place.

If you're looking for a silver lining, it's that you've gone years with MDS and that's a very good sign, that you've needed transfusions only occasionally, and that you are in the 5q- group that gave you some success with Revlimid.

Don't worry about boring us with CBC details. Many patients here track their counts, comment on them to each other, and help each other understand them.

Have you had a consultation with the MDS experts at Stanford University? There's a lot of research into MDS going on, so they know more and more about treatment each year, certainly more now than when you were diagnosed in 2003. While you are waiting to get a new doctor, it might be an ideal time to get a second opinion.

You can make some friends here, contact other patients through the Aplastic Anemia & MDS International Foundation's Peer Support Network, and look through our Your Local Area forum, where there's a thread by someone in the Santa Cruz area.

Mike,

My husband, Ron (age 65 yrs) was dx Feb'09. He too has 5q- as part of his bone marrow aberations, but, along with that, he has 4 additional aberations. His first Hemotolist/Oncologist that dx him, recommended Revlimid as form of treatment, but, we had already requested a second opinion at the Winship Cancer Center at Emory Medical Center, so, the Revilmid treatment was not started. The "referring" doctor thought it best to let Winship Cancer Center review Ron's charts/case first.

Amazingly, the second opinion doctor recommended against Revlimid because of the additional aberations. He said, for Ron, while the 5q- calls for Revlimid, for the other aberations, Ron would also require a form of arsenic, which, was highly toxic. This new doctor recommended Vidaza or Dacogen treament.. but, at the same time, he had an open clinical trial with low dose Vidaza (trial name: e1905). We opted for the trial. I've posted Ron's progress since 4/01/09 under the clinical trial section of this forum.

I share this, because, perhaps your chromosomal aberations may be what they refer to as "Complex" like Ron's, vs just the 5q- ? I'd be curious to know if you only had the 5q- or if you had more aberations?

God Bless you and your caregiver. I'm sorry you had to cut your vacation short... ironically, we were suppose to fly out yesterday for Alaska.. on a Halibut Charter trip...plus a little R&R... and we had to cancel due to this new dx and treatment...

I told my husband, who knows... perhaps it was our guardian angel was protecting us from something far worse.... but, still... it's very hard to accept... <Very Disappointing>

Cindy

Hello Mike

I was recently diagnosed with MDS and I got a 2nd opinion from Dr. Gotlib at Stanford. He confirmed my doc's opinion so we have two doctors who are in agreement on the treatment as well.

Jerry