1 year after chemo and I’m feeling worse than ever

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So I finished my chemo at end of May 2022 and my hair is slowly returning… curly! I haven’t been on this site since my mastectomy cos I thought I was coping. Recently I’ve been feeling so down and have such bad pains in my legs and knee joints. I’m having an mri and ct scan on 5th June just to see what is going on. I’ve also gained weight and it’s getting me down! I am active but can’t seem to shift it! Hopefully this is just a phase I’m going through cos I know I should be thankful cos I’m at this stage…. But it’s like I have hit a wall. Just wondering if anyone else has felt like this after treatment. I have reached out for the first time since my illness to cancer research and cancer focus for some guidance. X

  • Hi I'm 5 months on from radiotherapy and have joint pains, hot flushes, pains in general also menopause not allowed HRT weight gain and tired!! I'm trying to keep positive but every day is a struggle. I'm doing aqua aerobics a few times a week which I enjoy but exhausted afterwards. I feel the same just want to feel stronger again wishing you all the best x

  • Hi I’m 8 months after my treatment and I have joint pains, hot flushes weight doesn’t want to shift. I recently invested in a rebounded to exercise as I find this easier on my joints as I am not yet body confident for swimming. I find that even now the journey is a rollercoaster. Wishing you all the best x

  • Thanks so much for replying. Somehow it helps to hear others feel the same…. The joint pain and hot flushes are a nightmare and lack of energy! I’ve been going swimming but like you I’m now strugglig with how I look in a swimsuit! Anyway wishing you good luck as well and Thankyou Heart

    Jane

  • Aw Thankyou for replying. I actually know if they gave me hrt I would feel so much better but I understand their reasoning but it’s tough! My moods are so low and that’s me on an anti depressants! I hope things get better for you too. Thsnkyou xx

    Jane

  • I'm 13 months post op for lumpectomy and 5 days of radiotherapy on my left breast.  I was put on Letrozole but the side effects were terrible and my Oncologist changed me to Anastrozole in September.  I too had a lot of joint pain in hands, knees, hips and ended up with OA in my wrists. I was always tired and no energy to do anything.  I also gained  a lot of weight with the meds and I have now ended up with Lymphodema in my right arm, in fact all down my right side is affected including my foot and ankle.  I spoke to my cancer nurse last week and she suggested taking the Anastrazole at night instead of morning.  Although its just over a week I feel that it was a change for the better, not as much pain first thing in the morning and I've not been as tired during the day.  Wishing you all the best.

  • These stories all sound very familiar. I had a lumpectomy in Dec and radiotherapy for 5 days in Feb. Had Letrozole for 3 mths the changed to Tamoxifen. The First oncologist ignored the fact I have osteoporisis in my wrists. The second was more sympathetic. I take Collagen and antihistamines as well as Accrete a treatment for osteoporosis, vit D and calcium. My knee joints and back ache at times plus shoulder. I am determined to keep moving. Weight has gone up, I have started dancing again, even with a tight bra on the boob hurts a bit. 

    I am 66 yrs and have had some of these symptoms a long time, they flared up with this treatment. Who knows how much time I have left even with broken nights I'm going to keep going. Walking or doing something every day is a good distraction. 

    I hope you all find a way to move beyond this. Maybe the body adapts eventually. My dog is quite poorly and I have a son with Epilepsy, so I am quite busy. Dancing for me has saved my bacon for a variety of reasons. Xxx To

  • Maybe dancing is the answer! I certainly enjoy a good boogie! Just at the minute my knees would not appreciate it! I have osteo arthritis and have had hip replacement when I was in late thirties ….  I think that plays a part in my sore joints! Last night I went to bed at 8pm but couldn’t sleep with pains in legs! Today I feel much better and have been gardening…. Thankyou so much for replying  and taking the time. It so helps to talk to others Heart

    Jane

  • Yes I can empathise too. In a month, I reach my 2 year check up which is a couple of weeks post my surgery. A lot of this is in my profile. I coped ok to start with but in the past couple of months my joints are really sore - hips, knees, hands and the hot flushes are back with a vengeance.  I know we were experiencing warm weather but I still feel cold sometimes.  My sleep is rubbish. I only manage 3 hrs at a time and the most I get in one night is about 5 or 6 and then every fortnight when I know I don't have to drive (visiting my mum as my dad passed away 2 wks before Xmas from Alzheimer's and bowel cancer) i have to resort to a sleeping pill. I've moaned a few times that I wish we were told more about the post effects as this time now is far worse for me than the surgery and the rads! But I'm a plodder so keeping on going (sorry for the moan) x

  • I think you have to decide on a day by day basis. All I know is that if I don't move or exercise for 2 days then I have the energy. One of the dancers has had 2 hip replacements. She was a professional dancer, is still pretty brilliant. Dancers are a breed apart, I'm just a novice. They have such a high pain threshold they just do it and worry about it later. I think they have a higher level of endorphins or something. 

    Gardening, walking ,swimming whatever you can do it all helps. I have to help my son for the next 4 days, he's Autistic and Epileptic. I carried on having him home right through my treatments, he hasn't a clue I have been ill. I think I have got used to overriding it at times. When he goes back, I'll be lying down having 2 duvee days when he's gone. 

    We are still here kicking ass is what I think. I don't care what anyone thinks about me anymore. It's a liberating aspect of being older. Xxx

  • Hi am 3 months on from my radiotherapy . My left breast is still swollen am also taking Letrozole which cause menopause symptoms so yes hot flushes and sweats and very tire but I hot some tables of the doctor and I have been taking black chosh herbal tablets and that has help and I have no much hot flushes

    hope this helps xx

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