Late effects of radiotherapy

  • 17 replies
  • 66 subscribers
  • 867 views

Hi guys, I haven’t been on here since my RC in March. It’s been a tough journey healing, they damaged a load of nerves in my pelvis and my right leg is numb to my knee. I can’t walk far and now either use a wheelchair or a mobility scooter to get around. I had chemo radiation for five weeks, which ended on the 8th of August. During it, I was violently ill with sickness and diarrhoea, but a few different medications sorted that out. In October I was taken off naproxen (a medicine I’d been taking since December for my side effects of stage 3 squamous cell carcinoma of the bladder) because I was now on Apixaban, for various blood clots in my lungs, and they shouldn’t be mixed. I’ve gradually got to a place where I hope I’ll never ever be again. I’ve been in excruciating pain, I’ve been put on pregabalin 400mg a day, and my amytriptylene has been upped to five a night now. I’m finally feeling like I’m starting to come out the other side, except at night where it’s too powerful (read my bio). My question is, has anyone gone through this at all? I have it in my head that it’s the cancer that’s come back as it spasms pretty bad, and the only time I had that was when the cancer was there.
ps sorry for the long post Weary 

  • Hi  . Sorry to hear what you are going through and reading your profile you have been through a lot. I hope you start feeling better soon and the spasms pass without being anything to worry about. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Thank you Riley xxx

  • You are having to put up with quite a lot. Hope it improves soon.

    I have not had a RC but can sympathise regarding the pain, my cancer has spread to my Pelvic Muscle and is squeezing my Sciatic Nerve. I have been in pain since July last year and they keep trying different meds to Improve it. They have now got the pain down to around 70% but i have the aching pain now constantly, they put me on a 10 day course of Dexamethasone with 20mg Morphine twice a day. 

    I saw a Consultant today in the pain clinic regarding getting a nerve blocker but was told i would probably lose the use of my left leg with it being my Sciatic Nerve. 

    I take it you are under Palliative Care for the pain so i would suggest probably to be more assertive and badger them to push for other options.

    Hope you get things sorted soon 

  • Thank you, yes the pain consultant and palliative care consultant were both at the last meeting xxx

  • That pain must be excruciating for you, I’m so sorry you’re having to go through that Weary have they offered any surgery or anything to help?

  • Only thing they can offer is a Nerve Blocker but the down side is because its the Sciatic Nerve means i lose most of the use of my left leg, so that's not really an option as it would then mean i cant drive or walk properly. I am still working which i find helps because i am continually moving. They are trying to find the right combination of Meds to try and control the pain as much as possible. The Steroids and Morphine have really lowered the pain down to a constant dull ache which i have 24/7 so i dont think we are far off finding the right ones.

  • Hi LiRoss,I’m so sorry to read this.I hope they can do something to get on top of the pain.Love and hugs Jane xxx

  • Hi old friend,

    thank you, seems to always be one thing after another Weary

  • I wonder whether some of the complications may be due to having Squamous cell ? You have been incredibly unlucky to get so many complications.I’m keeping my fingers crossed that things get better for you.Love Jane xx.

  • Hi guys, it’s not late effects of radiation after all. Six days ago I found out that my cancer is back. RC and lymph node removal done in March last year, followed by chemoradiation for 5 weeks. My squamous cell carcinoma seems to have come back quite aggressively as in October a ct scan showed NED but by end of October I started having pain. Anyone else had this type of cancer come back? TIA.