[lisab]

I’m a 58 year old del 5q patient and have been on revlimid (lenalidimid) for almost 3 years. It has worked well for me. Some minor side effects but nothing serious,just annoying. I have a bit of rash and some diarrhea issues. Over the counter remities have taken care of that. My hemoglobin in July was 141 which is 14.1 in US measurements. I also take ASA and a number of vitamins. I have regained some of my energy but certainly am not normal for my age. I’ve feel very lucky to be doing so well.

[lisab]

Hi Lena
It depends on what form of MDS your mom has. I’ve been a patient for almost 3 years and still going strong (well as strong as I can)
Because we are all different, the treatment that works for one may not work for the next person.
I have read on this message board that there are some that have made it over 20 years on the same treatment as I’m on. I’m hoping in 20 years to say the same thing.
All I can say for sure is that we need to try and enjoy the time we have left with our love ones and try not to worry about how long we have with them.
Take care and best wishes to both of you.🤗

[lisab]

I’ve had little sores in my mouth that come and go. Only started recently. I do get some rash on my face and upper chest as well. Annoying but tolerable. My recent hemoglobin was 141 (which translated in US terms is 14.1) so I’m going to continue as long as it keeps working.
Joe, I’m a deletion 5q patient for almost 3 years and even though my hemoglobin is high I still lack energy. I worked to regain my energy after Mt diagnosis but have had to except that it will never be what it was. I do my best to enjoy as much as possible but in smaller quantities.🤷‍♀️

[lisab]

Hi Nancy
Been on lenalidimid for almost 3 years. The pharmacist is constantly warning me that no one of child baring age should have contact with it. My rule is no one touches it but me. I wash my hands after as well. It was explained to me that this drug is related to thalidomide which caused so many birth defects over 50 years ago.
I’ve done well on this drug. Been transfusion free since I started. Have some side effects but the benefits out weigh those.

[lisab]

I’ve had 2 Pfizer and 2 boosters. Sore are for the most part. I did recently get covid mildly. That was bad enough. It was a miserable few days. I know the vaccine helped protect me from getting it worse. MDS makes us immune compromise and we need to protect ourselves.

[lisab]

Hi Mary
I’m a Canadian with del 5q as well. I was diagnosed almost 3 years ago. Been on revlimid and have a few side effect. Benefits have out weighed side effects. Bloodwork results have been “perfect”. The frustrating part is my energy level is still below normal. Part of the disease unfortunately. I have had to learn to accept my limitations and can still do most things just for shorter periods of time.
Good luck lisab

[lisab]

I to get a rash from revlimid. My side effects have out weighed the benefits I get from the drug. I found if I used Gold Bond eczema lotion on the rash it keeps it from itching and it goes away. Hope this tip works for others.

[lisab]

Mary
I’m Canadian as well. Diagnosed with del 5q almost 3 years ago. Been on revlimid 5mg since. Started on 10mg but my white count went up. I’m maintaining a 138 to 141 hemoglobin and still tire easily. It is frustrating but I’ve learned where my limits are. Over exertion I’ve learned comes a painful price.
Good luck Lisa B

[lisab]

I’m a mds 5q patient. Caught covid the end of June.I’ve had 2 Pfizer shots and 2 boosters. I’m a resident in Ontario Canada and recently they dropped almost all the restrictions for covid. Even though I still mask and use sanitizer, I still caught it.
At first I had cold symptoms and tested negative using a home test kit. Next day I was running a fever and tested positive. At peak my fever was 100.3 and I took tylenol and used a cool washcloth to bring it down. It lasted about24 hours. The worst part was the coughing which was dry and hacking. On a visit to my nurse she found I had some fluid build up in my right lung. I was prescribed antibiotics and an inhaler. It is still not completely gone a month later but clearing.
It hasn’t been fun but I believe the vaccines I received helped keep it from getting worse.
All we can do is the best we can to protect ourselves. It hasn’t gone away. I continue to practice distancing, masking and use sanitizer. Hope to never get it again.

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