Inflammation pain from radiotherapy

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Hi everyone

Thank you for all you replies on my other posts, there are usually too many to reply to but I read them all and youve been really helpful.

I have just started my chemo radiation treatment this week and today is day 4 as they missed a day on Monday (didn’t have my Mitomycin in stock)

Anyway, since day two of radiotherapy my thighs and hips have been really inflamed and aching like I’ve been to the gym for a week. All this new stuff this week also induced a few anxiety attacks that landed me in a&e. I’ve had two drips so far and multiple antisickness tablets. 

The radiotherapy review team today said the pain in my legs is probably from the radiation and hitting my nerve endings and has caused all the inflammation…

I can’t walk properly and I haven’t slept properly for two nights and the pain is so bad. 

This isn’t a side effect apparently so I thinking am I the only one? Has anyone else experienced this? 
I am just waiting on the GP calling me with some stronger pain relief as paracetamol and the oramorph they gave me in hospital hasn’t touched it. 

  • Hello AsLu24

    I think what has happened to you is incredible bad luck and I am so sorry.  We all know that the treatment comes with side effects which can be quite severe for some, but this is the first I have heard of it happening so early on.  With everything that is going on I am not surprised that you had anxiety attacks. 

    But just because I haven't heard of it doesn't mean to say it hasn't happened to anyone else on the forum and I am hoping that someone with a similar experience will pick up and be able to offer you some tips.

    I would also ask for pain relief from the team treating you at the hospital, they will normally prescribe much stronger drugs than your GP that may help overcome this.  I really hope this doesn't continue for you.

    Sending gentle healing good wishes.

    Irene xx

  • Thank you for your reply.

    It’s all been very strange, even the teams haven’t known what it is. I’ve woke up this morning a lot better and the pain in my legs has subsided. I had a good sleep last night which was well needed. The Gp gave me some amitriptiline and oromorph which took a while to work but eventually did.

    The evening was eventful which me having probably my most intense panic attack, I’ve never had these in my life then all of a sudden I’ve had many. The impending doom of thinking I’m going to die is the worst part. 
    I think this got worse as I was convincing myself I had a DVT in my legs because no one seemed to know why my legs were in pain. 

    anyway I am going for radiotherapy this morning and they will review me again and again next week. 

    How are you? x

  • Hi Aslu,

    I'm wrecked for you that it's starting off this hard. Most of us have to build up to the mizry, and you're getting it all dumped on you out of the gate! I sure hope your team can figure it out and alleviate it. I mean, their explanation makes sense, but so much that you'd think it would happen a LOT, but I haven't heard of this particular reaction before.

    The anxiety attacks? Yeah. I got 'em every now and then before cancer. More frequently now. Had a doozie last night. I'm in a hotel, officiating a wedding later today. I had to talk myself down from sending a copy of the script to the bride and telling them I'm headed for the hills (or my little farm at any rate.) No sleep and raging social anxiety. Heh. Well, mine will be all over by this evening, so not quite like yours at all, is it?

    Just another anal cancer gift!

    Please let us know how things go for you today.

    Hugs

    Suz

  • Hi everyone 

    so I think I found out what the cramps were etc… CAFFEINE withdrawal

    I think with the treatment starting etc and being distracted I didn’t even think about it. I did stop it abruptly which isn’t advised… so I think I paid for it. I am doing much better now and starting week 3 tomorrow.

    I have had a very upset tummy this weekend and starting to get a bit sore now when going to the toilet. The stomach cramps have been constant and I haven’t been able to go to far from a toilet… 

  • OMG, that'll do it! I've only had to deal with caffeine withdrawal twice (I limit myself to one big mug in the morning but can't quit) and it was GHASTLY. 

    Hugs

    Suz

  • I am so glad that you have found an answer, I am not a great coffee drinker (especially since treatment, my taste buds have changed) but I have spoken to friends who have had extreme withdrawal symptoms.

    I am sure the Sitz bath has been mentioned to you - a plastic bidet that sits on the loo and it is invaluable when the nether regions start becoming inflamed.  I even used mine to go to the loo in, it was much less painful under water.

    Just keep counting off those days, you are over half-way through!

    Big hug

    Irene xx