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Originally Posted by Lifeguard
I have been on Lenalidomide with great success for nearly five years but have found in the last eight months that I seem to be dealing with variable blood counts and constant infections, especially in the last three months. Unfortunately I caught the flu twice which stopped me from competing in a triathlon and an ocean ski race and stupidly whilst rushing around I ended up with a 5cm wooden splinter in my foot. It's been four weeks since I injured myself and my foot is still not entirely healed even with the antibiotics. Two nights ago I ended up in hospital with acute symptoms of chest and back pain; it seems I developed a problem with my Oesophagus. Initially the hospital thought I had a blood clot as one of the blood tests came up positive for that risk. The doctors came to the conclusion that the infection in the foot or a gastro issue could be causing inflammation in the body. Last year I had multiple minor experiences like it , but this episode was far more painful and too be honest a little scary. Though I am very grateful for my general health I am concerned about the long term side effects of Lenalidomide especially considering I'm only 43 and will need to take it till it stops working. One of the side effects of taking it can be damage to the Oesophagus. I don't really want to be dealing with additional medical issues. The MDS symptoms are quite enough! I always thought that having a BMT early would be ideal, but research now indicates that low risk MDS patients have less success rates. After reading many of your experiences and from a close friends journey it's not always an easy path to take.
I keep myself very fit to manage the symptoms of MDS and of late it seems every step I gain in keeping myself physically and mentally strong that the MDS and infections are tripping me up.I want to feel like I did before MDS! It takes so much effort to do what other women of my age are doing effortlessly and I feel a little dissapointed that I don't recover quickly from physical activity, illness or just general daily activities. I've had MDS for seven years and I am very grateful I'm still alive, but with each passing year I have become a little impatient with the syndrome. I meant to post because I wanted to ask if anyone else had experience with their oesophagus and if it was related to the drug their taking instead it seems I have vented my concerns. Thanks for listening.
Cheers Rachael
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What are your RBC & WBC counts? my husbands are low, but still within normal range, and he struggles when he gets a minor cold. He gets throat and sinus infections. It's definitely not fun. The key for him is to go into the doctor right away and get Antibiotics. It is very stressful for him too. He also gets very run down if he over works. He plays hockey and he's starting the summer program this week. I'm curious to see how that goes.
Keep strong, you're amazing! We were recently told the same thing about BMT, so we're being matched for worst case scenario. I wish I had advice for your decision, but I don't know enough about it.