Half way through RCHOP

FormerMember
FormerMember
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Hi all

I'm half way through RCHOP and due a scan tomorrow to see how things are going. The last round was the worst so far with flu like symptoms for the following 5 days but after that I tend to feel normal so I'm reacting better than some. Has anyone else experienced things worsening as they speed up treatment or is it just the accumulative effect of the drugs?

It seems I'm a bit of an odd case, the FL is effecting one node but its quite enlarged at over 8.5cm but no sign of it anywhere else, including my bone marrow. I was diagnosed after having a bad cough, breathlessness and fatigue for over a year, they weren't expecting FL and my chest and throat were all clear but they found a mass in my lower abdomen. On the plus side the pain mess for the back pain I'm getting stopped the cough and no more breathlessness or fatigue.

Has anyone else had symptoms that the Dr's can't explain?

Mark

  • Hi Mark and welcome.

    Although I had a different type of NHL and the only symptom back in 1999 was a rash my long treatment journey started, unexplained symptoms for some folks is normal and indeed I am left with unexplained treatment ‘left overs’ and have often had unexplained infections....... but these things improve over time (hit my name for my journey)

    Side effects especially fatigue is accumulative over the cycles but once out the other side some normality slowly returns but you have to give yourself time.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember

    Hi Mark, 

    I'm due my 3rd rchop on Thursday and then I'll be half way through my chemo. I've been struggling with peripheral neuropathy since my 1st chemo it didn't bother me at 1st but now it's worsened and I struggle with opening lids, doing buttons and stuff like that. I have read that this can continue for a whole after treatment I'm just hoping it's gone sooner rather than later 

  • Hi  and I see this is your first post so welcome.

    Peripheral Neuropathy is a ‘pain’ and yes, for some it will be part of your treatment life...... and for a few something to get over post treatment but it will pass.

    I had if very badly in my hands and just like you buttons were a mystery so my wife had to do all these things for me. But I always accepted that it was a sign that the treatment was getting into every area of the body and doing its job.

    Do tel your team as they can tweak your treatment as some of the drugs used are more prone to PN, but took the view I wanted the full effect on my cancer..... and it worked for me abd will for you.

    I did get two small hand sized rugby balls (stress balls) and worked my hands all the time to get the blood flowing and this helped in a small way.

    Is it R-CHOP you are having?

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Hi yes it is rchop I'm having for stage 4b follicular lymphoma. My consultant has said that my body is reacting really well to the treatment so I don't really want the treatment tweaking. I did mention it on my last treatment but it's spread to more fingers now. 

  • I had a different type of NHL and R-EPOCH (hit my name to see my story) and it tends to be the Oncovin (Vincristine) that developed the PN...... but I took the view ‘no pain no gain’ if the treatment was making my have some side effects what was it doing to the cancer.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Gem2boys, I had rchop too 11 years ago, and had neuropathy and had the vincristine stopped due to this, like you I was concerned it might effect the outcome, but it did not and I was fine, thats 11 years ago. The team know what they are doing so don't be to worried if things are tweaked they are thinking about the long term and what's best for you.

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are