[Paula Voell]

Hi Mary,

I was diagnosed with MDS 18 months ago, confirmed by a bone marrow biopsy. I was reluctant to start on Revlimid, so I had a year of blood transfusions (every 6 weeks). It brought the hemoglobin up to better numbers. (My lowest was 6.2 just before a transfusion.)
After a year I decided to start the Revlimid. Part of my reluctance was the cost. So far I have gotten 2 grants of $10,000 each which have paid for the co-payment that insurance doesn’t cover.
The best news is that my last hemoglobin count was at 14.2, which is within normal range and higher than the transfusion numbers
.
There is a downside that I am dealing with. I have a very confused intestinal tract, which causes constipation for several days at a time followed by several bouts of soft stool/diarrhea. I can’t figure out the right eating/laxative combo. It can be limiting because I am not sure when this will occur.
Since this is not a constant I am able to have a productive, happy life.
Best of luck to you.
Paula Voell, 80 years old

[Paula Voell]

Reply to Joe regarding energy.

Yes, I have considerably more energy with the rise in hemoglobin. Today we walked a loop at a park (twice). In previous visits, I only ventured around once and sometimes had to stop for a rest.
So, I am at what my pharmacist said is the “sweet spot” meaning the correct dosage and no significant side effects.
Paula Voell

[Paula Voell]

Dear Matt,
How lucky your grandmother is to have such a caring grandson. And there are a lot of ways you can share your love during this time. No medical advice, just a few things I’ve learned over the past year of being an MDS patient.
If she requires transfusions, perhaps you can donate blood as a “directed” donation. Try to be with her during doctor’s visits. It’s all new and confusing. For a transfusion day, take a warm fleece (it can be air conditioned and chilly;) request a warmed blanket; pack a lunch or some comfort food. Bring some distractions for the time in the chair, a book, magazines, her tablet.
Encourage her to drink water everyday, but especially the day before transfusions; it plumps up the veins to make the stick easier. Expect her to be fatigued and try to get her to rest…that’s her way of fighting now.
Contact local agencies and resources. You never know where you’ll learn something new or find the help you need.
Medication is expensive, but there are foundations, etc. that can help. Ask your doctor about assistance.
I hope you and she can find the equilibrium you’ll need. It can be a roller-coaster ride. Obviously you are resourceful, being on the MDS site so quickly.
Paula Voell, a 79-year-old grandmother

[Paula Voell]

Hi Stacey,

thanks so much for taking the time to write this explanation of your experience with MDS/Revlimid. It’s so true that it is comforting to know that others have gone through serious issues with MDS and have survived and thrived. Congratulations, especially, for your children.
I am very much at the other end of life (at age 79) and my biggest decision is whether it’s worth getting into taking Revlimid, given potential side effects and the uncertainty of how it will be paid for. I understand there are grants, insurance, etc. but right now it’s not clear that I would be eligible.
I know I have to be the one to make the decision, but it’s good to know that I’m clearly not the first.
All the best, Paula

[Paula Voell]

Hi Kati, I am fortunate that my daughter is A+ blood type which is the same as mine and she has donated twice for my transfusions which are between 5-6 weeks apart now. I had a poor experience a couple of days ago when I went for a transfusion. I am very aware that I have small and curvy veins. The nurses usually spend several minutes to find a good location for needle insertion. One of their tricks is to give me a heated blanket to plump up the vein.
When I mentioned this to the most recent nurse, she said she is the one called on for the most difficult cases and was confident she would get it on the first try without the blanket. Well it didn’t happen. She tried twice, another nurse tried twice and four veins blew out. Then they finally brought the heated blanket I had asked for at the beginning and found a vein that worked on the fifth try.
I am left with five bruises on my arms. I find it ironic that one of the MDS symptoms is easy bruising. Lesson from this experience is to be more assertive in what works for me. Paula Voell

[Paula Voell]

Hi Stacey, I am also taken by the length of your Revlimid experience. I am deciding on whether to start this treatment. What were your initial effects and what other long term effects did you experience. How did you handle the cost of the treatment? I am a 79 year old woman and am currently in a 5-6 week transfusion regimen. What is your transfusion experience? Thanks for helping me out and I wish you continued success. Paula Voell

[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

[Paula Voell]

Thanks Tom, what shots are you getting? I am a 78 yr old woman who was recently diagnosed with MDS 5q.

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