Infections and drug induced complications

[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

[Bossywife]

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

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.

[maggiemag]

Rachael, I am sorry that you are having so many issues. You didn't mention what exactly was wrong with your esophagus. It sounds like you might have had esophageal spasms, which I understand can be quite painful and mimic a heart attack. If it is reflux, that is very common, and I would bet not related to the Lenalidomide, which I have also been on in the past. The incidence increases as we age or are overweight or eat/drink the wrong things, or just because! Many, many drugs can cause gastrointestinal issues, but there is treatment out there that works. I've had reflux for ages, and take Protonix twice a day, and have zero symptoms.

As for your frequent infections, we have discussed in the past about some of us having low immunoglobulin levels. There are several that can be checked, IGG 1,2,3, if I remember correctly. IGG3 deficiency can cause sinus/upper respiratory infections I think. You could ask your heme to check for that.

It's great that the Lenalidomide has worked so well for you for so long. I developed significant hyperthyroidism the first time I was on it, then serious peripheral neuropathy the second time I was on it for 9 months, that meant I had to stop the drug permamently. Now on W/W for now.

Good luck, and keep us posted!

Mags

[Lifeguard]

Bossywife - Thanks for your kind words. My WBC is stable at 3.65 and my Neutrophils stay around 1 and drop occasionally below it. The Revlimid keeps my Hb stable with only my RBC dropping slightly under normal levels and the platelets are at 100 which is a side affect from taking the drug. When I was first diagnosed both my Hb and white cell counts were affected. It's good your husband stays active, it really helps with managing fatigue. It sounds like an oxymoron to do exercise when your tired, but honestly it works. It picks up your spirits and makes you feel energised. It's a great way to keep positive when your living with the MDS symptoms or any illness.

Mags - Thanks for your advice and support. I'll definitely ask the specialist about the IGG3 deficiency test.The hospital gave me pantoprazole for the oesophageal spasms but were not willing to give a reason for the acute episode. I have experienced constant sudden onset diarrhoea ( three - four times a week) for five years now and was referred to a specialist last year, but somehow it was lost in the hospital system. On my last specialist visit they made another referral, unfortunately it seems to have been misplaced again. I'll have to make some calls this week to chase it up. Hopefully a gastroenterologist may have answers for both issues.

I experience peripheral neuropathy in my feet, but the symptoms are minor and still bearable. The Haematologist believes that my Hb will drop if I stop taking Lenalidomide and my blast count would return. With no real other options other than a BMT I will need to live with the neuropathy for now. My bone marrow test results are not improving, with the MDS del 5q aberration percentage increasing incrementally with each biopsy.

As for the foot, this morning I pulled out another splinter, this time it was 1.5cm long. After four weeks I don't no how it was missed! My husband put a drawing agent on it last night and this morning I could remove it. I might just have a chance to get rid of the infection.

Thanks again for your kind words Bossywife and Mags.

Cheers Rachael