Waldenstrom's Macroglobulinemia

Hi, I have just finished 6 months of chemo r/benda, still have fatigue and weakness and neuropathy, has any one else felt better after chemo?

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Hi, I cannot help with your question but I just wanted to say I think you and your body have been through so much emotionally and physically over the last 6 mths, please take care of yourself and I hope you find this community forum helpful and supportive. Please keep posting.

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Hi It took me a couple of years to recover physically and mentally, but I never regained my full fitness. There are a number of posts about fatigue etc on the forum

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Hi, my son finished treatment 4 months ago now and we have seen a gradual increase in his energy levels. He still has periods of being wiped out, but there is a definite, albeit slow improvement. I think it’s bound to take the body a while to recover from all it’s been through. I’d recommend speaking to your team if you are worried, but otherwise I wouldn’t expect too much too soon. Take care of yourself and take it slowly. I’m sure there are lots of helpful posts on this forum regarding fatigue. Wishing you all the best and congratulations on finishing your treatment.

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Hello @Jewel123,

Thank you for sharing your experience with the forum. I am sorry to hear about your fatigue and weakness and I honestly can only imagine how difficult it has been for you. We hear from some people who finish chemo that it may take some time recover, but it also varies for each person. It may be helpful to speak to your treatment team about your fatigue. However, how are you feeling now since your last post?

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Hi, thanks for your reply, I found the forum difficult to suss out. I’m having recurring infections since post chemo.

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Hi, I also found the forum a bit difficult to suss out to begin with, but I have found the more I practice on it the better I have found it. Just think what you and your body have gone through emotionally and physically, I would say give yourself time, be kind to yourself and have the odd treats. How is your fatigue and weakness now?

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I have recovered from chemotherapy

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Hi Erica, still having weakness and fatigue, I’m also fighting off the flu atm. How long was it before you felt better post chemo?

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Hi. If you click on the 3 bars it will show you the main headings, and then the questions that have been asked in that section. I hope that helps

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Hi, I have been on watch and wait for the 15 yrs since my diagnosis, so I am a very lucky girl. Fatigue was one of the symptoms that led to my diagnosis and as I have not had treatment the symptoms do not go away, I have just got to know what affects me emotionally and physically when I overdo it and I know that the fatigue can set in immediately or up to 48hrs after I have overdone it. Therefore I manage the fatigue and know when to rest and when to get fresh air nd gentle exercise. Are you learning more about yourself in different ways.

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Hi, goodness that’s a long long time to be on watch and wait, I was for about 8 years I think. Have you got smouldering wm? When my paraprotein was 30 then they started treatment. I was hoping to feel better, but having all these infections and a weak immune
system it is hindering my recovery.

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Hi, No, I have Chronic Lymphocytic Leukaemia. I expect your infections and weak immune system are hindering your recovery. Take care. Can you tell us more it might well help others?

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Hi
I have WM was diagnosed in 2015 and treatment 2017/18, completed last May.
Everyone has a different experience to B & R depending on the dose and how your body reacts.
I was very fortunate that although the antihistamine they give you with Rituximab knocked me out and let me wiped out for a couple of days, have not really suffered with fatigue.
When I have felt desperately tired have found that getting up and moving around helped and also making sure that I got some exercise each day. Only you can judge how much you can do but it does get better.
Your immune system will, take time to recover. The results of the Rituximab take longer to show, my IgM level has continued to drop and am hoping that at my next appointment it may have dropped some more.
I found it difficult to deal with the mental side of it all as having treatment really bought the diagnoses home to me. Almost a year on I am feeling that I can really get back into things again. Some people with WM have years of remission just hoping for the same.
I don’t know where you are but if you have a Maggie’s Centre near you they do a Where Now course specifically for people who have completed treatment, can’t tell you what a help it was for me.

Hang on in there it does get easier.

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How are you feeling in the months since finishing treatment @jewel123 - have you noticed a change in your weakness or fatigue?

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