Unbearable side effects

FormerMember
FormerMember
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Hi,

I haven’t been able to post in a while- I am just completely exhausted on a daily basis.

I was wondering if anyone has experienced long time side effects from previous cancer treatment?

After a full hysterectomy (December 2019) and a diagnosis of Stage 3B, Grade 3 Endometrial cancer (January 2020), I underwent 6 sessions of Chemotherapy, 25 sessions of Radiotherapy and 2 sessions of Brachytherapy (overall my treatment was from February 2020 - August 2020).

I had my second CT scan done earlier this week (my first scan after all my treatment was in December 2020). The second scan I just had was brought forward from December 2021, as I was concerned about ongoing pain in my back. It is most likely to be rheumatoid arthritis- I was diagnosed with this a few years ago. But it naturally does concern me, especially as it appears to be getting worse. I will get the results of my CT scan at my Oncology appointment on 1st November.

Initially after completion of my cancer treatment, the main side effect I was getting was unusual sensations all over my body. This mainly occurred when I went to bed and these sensations were so strong that I would wake up.  These side effects are still ongoing and now occur during the day, as well as at night. However my main issue at the moment is continuous pain in all my right leg. The pain is unbearable, I have nearly fallen over a couple of times and I am now getting anxious that I may fall over when out + about (although going out is very rare these days, due to my low energy levels).                                                                                                    

There was a mention by a nurse a few months ago that I may have lymphoedema (this was when I had swollen legs). But I was further updated that the swelling was just caused by fatty tissue on my legs. I was given support stockings to wear, which in all honesty I have not worn as they are awkward to put on and uncomfortable to wear. So I am not sure if this ongoing pain I am getting in my right leg is a result of my not wearing these stockings?                                                                                                                    

I have been prescribed co-codamol but this has not brought any relief.

Any advise would be much appreciated? Or if anyone has encountered similar side effects?

Shorty x

  • Hello  I’m so sorry to hear about your ongoing problems. I haven’t experienced those symptoms so I can’t offer any advice there. The pain and lack of coordination could be due to nerve damage, but I’m not a medic, so will just say please ask your GP for advice and raise it with your oncologist when you see them next month. You may need stronger pain killers or a referral to a physiotherapist. 

    With regard to the compression socks, the clinic that prescribed them can also prescribe and provide a donning aid. My husband has one, it’s a frame and really makes getting them on much easier. A pair of slightly grippy rubber gloves can help with smoothing the fabric out once the stockings are on. Getting them off is much trickier! 

    I hope you get some answers soon and that the problem is easily treated. Thinking of you and sending lots of good wishes. 

  • I don't know if this is appropriate for the pain in your leg but my mother has horrendous varicose veins mainly below the knee and over her feet. She gets support socks (like popsocks) on prescription and also buys them from M &S which are far easier to get on than the tights. Hope you get some relief soon. Deb

  • Hi Shorty. After surgery I had to wear the thick elasticky stockings for 4 weeks. If you have the sort with a little hole at the toes, here's a tip for getting them on: slip a little plastic bag over your foot, pull the stocking on over it (it slides on easier over the plastic than over your skin) then pull the plastic bag out through the toe-hole.  This is how the hospital nurse put mine on. Later, someone gave me a little slippy nylon sock to use instead of the plastic bag. I still have it, and I still use the stockings if flying. I agree they are a nuisance though. I could not get my jeans, long boots or even some of my shoes on over them. In hospital one time I saw someone wearing stockings that appeared to fasten with a zip up the back.

    Have you spoken to your CNS about your symptoms? Or GP, or even 111? Don't suffer in silence, when a phonecall with the right person might be really helpful.

    I hope you are feeling better anyway. LR.

  • Hi . Sorry to hear your having ongoing problems after your treatments. I'm attaching some reading matter on Peripheral Neuropathy which can be a side effect from chemotherapy. Have a word with your CNS they should be able to offer advice about this condition.

    If you have lymphoedema the support stockings are hard to put on and they are uncomfortable but they do the job. I thought I'd developed lymphoedema and was told if it worsened I could be referred to a specialist clinic, again have a word with your CNS.

    Co-codamol is often prescribed but beware it is an opioid so can become addictive. My hubby had them for hip pain & he had horrendous constipation so he reverted to paracetamol or Ibuprofen.

    Hope you get sorted soon, hugs, Barb x


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