New to the Foundation at 79 years old.

[ROBERT HOGAN]

My name is Bob Hogan and I just recently joined the foundation. I was diagnosed with Deletion Q MDS in 2015 and had no problems until 2017 when things changed. I had occasional transfusions and did well un until 2017 when I was started on Revlimid. Revlimid worked very well for 2 years and during that time I required only 1 transfusion and that was early on. Unfortunately in July of 2019 it was determined that the medication had indeed reached it’s useful period. After that I was put on Procrit to try to stabilize my hgb but that failed, and then as a last resort was put on Inqovi which initially showed promise but after 6 cycles it was determined that Inqovi was a non starter which put me back to being transfusion dependent with a hgb threshold of 7.0. All of my treatment has been at a VA Medical Center and my Physicians have been Hematology/Oncology Fellows at a local Medical School, so I am receiving good care. I keep researching for something new but it appears that there is nothing on the horizon specifically for treating Deletion Q. If there is anyone who has been through something similar I would appreciate hearing from you.

[Kathleen Till]

Robert,

I am in Moffitt at the moment undergoing a Bone Marrow Transplant. One week and a half into it. I have or hopefully had MDS High risk.

I wanted to mention the above and then go on about Moffitt. Moffitt does a lot of clinical trials so maybe, if you have not already done so, get in touch with them with the hope that they may have something up their sleeve for you.

I was told the other day that they have the largest research and clinical trials offered in America.

I do not know anything about your MDS so will check it out.

I was very fortunate at my age (73) to be put forward for a transplant. They transplant if you are fairly fit up until around 80.

Moffitt is a wonderful hospital and I am putting all my faith into them to get me through this.

Good luck and hopefully you find something to help you.

Kathy

[Tom Nelson]

Good evening. I, 78 years, was diagnosed del5q 5+ years ago after a BMB. HGB had been dropping for 2 years. to 10.+. Went on Revlimed , but had to stop after 2 months due to rash reaction. HGB was normally 9.5. Went on Aranesp 2 1/2 years ago, every other week. been steadily downward to now 8.2-8.5. Now holding at these numbers. If Hgb goes lower, we may re-try the Revlimed with lots of Benadryl. Have not had a transfusion as of yet. Been in the low- mid 7’s after hospitalizations, but came back up to the 8’s. Am active at home, being wife’s caregiver, but have only 505% of strength and stamina as pre MDS. Had 2nd BMB this past spring with no major changes, just some new small variants. Would rather not start the transfusion regimen. Trying for another 5 years of activeness.

[ROBERT HOGAN]

Kathleen:

I wish you the best with your transplant therapy. Although I am in relatively good health other than MDS I doubt the government would be willing to foot the bill for me going to Moffitt. At this point I just have to hope something new pops up in the near future.

[ROBERT HOGAN]

Tom:
I to had a reaction to the initial Revlimid, and my doctor and I decided to try a lighter dosage. We dropped from 10mg to 5 and it did it’s job for nearly 2 years with minimal problems. That may be an option for you. Like you I recently had a BMB #5 with very minimal change from the original. Having been through all the available medications, I am now in a wait and see mode for something new.

[Tom Nelson]

Del5q. Hgb dropped below 8 again. Still taking the Aranesp every 2 weeks. Will be re-trying the Revlimid after 4 years off. ( rash problem). Will try the new lower dose of 2.5 mg and hope the rash does not reappear.

[Paula Voell]

I am finding it so difficult to decide whether to start Revlimid. I was diagnosed this summer with the 5Qdeletion and two doctors suggested Revlimid. I decided to “watch and wait” with transfusions, have had 4 with intervals of 10 to 6 weeks. Hemoglobin was 6.9 at time of last transfusion. Strangely I didn’t have any discernable fatigue at that time.
So, generally I feel quite fine, except that I am not able to walk outdoors without becoming fatigued after about 10 minutes.
I find it difficult to start a medication with potential side effects when I am feeling relatively well, especially one with a high price tag.
And not understanding how much it extends life? And what that life is like?
Any advice is welcome.
Paula, a 79-year-old woman

[ROBERT HOGAN]

I was treated with Revlimid 5mg and went 2+ years without a transfusion. The efficacy of Revlimid is at max 2 years and during that time I only had one transfusion and that was at the beginning. True it is very expensive but in my opinion it gave me 2+ years of normalcy. Unfortunately I am now back being transfusion dependent as nothing we have tried ( Procrit & Inqovi) did much good. I hope this is of some help. I was diagnosed in 2015 and didn’t start any treatment until 2017, like you I am 79 years old. I’m hoping for something new to pop up for treating of this specific strain of MDS.

[Joe Catalano]

I was diagnosed with low risk and he is three months ago anticipating injection of our nurse but so far not needing it and I am on watch and wait. I too am hopeful that the longer you can postpone treatment or stay on the treatment new therapies will be developed tonight even more helpful than those currently known. Best wishes to you

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