Post operation chemo and nerve damage

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My husband's has just had a successful PG the tumour was clear round it when removed, of the 25 lymph nodes only 3 had cancer. The tumour if T2. We went to speak to the chemo doctor for post operation preventative chemo yestarday and that's where our problems started. The intial chemo has given my husband nerve damage in his hands and feet, if they do the same level again it could end up worse damage to his nerves. The doctor has said he could have low chemo, but this risk is nerve damage. The doctor said they've can't do any tests to determine he still has cancer. So the risk is do no chemo and cancer could develop elsewhere, or do chemo risk more damage to nerves but at only low level so may not remove any cancer that's if there is any..just so confused feel like we are stuck between a rock and hard place ..has anybody that has been through this that can offer their experience??

  • Hi, I had some neuropathy which was temporary during the first 4 rounds of FLOT chemo,since the 2nd rounds of chemo this has remained in my finger tips but it is something that I’m prepared to live with if it means I can remain cancer free, I did not want the dosage to be reduced, hope it improves for him over time x

  • I had neuropathy when I had chemo for bowel cancer.  The last dose wasn’t given as they were concerned about nerve damage.  I can feel some numbness when it’s very cold but it’s easy to manage.

    When I was diagnosed with stomach cancer six years ago, I had chemo before surgery.  The oncologist said he wouldn’t give me FLOT because of the oxaliplatin which can cause neuropathy.  So I had ECX which doesn’t cause neuropathy.  There are different chemotherapy treatments so it would be worth a discussion about options. 
    Good luck!

    Jac

    Life is what happens when you are making other plans!  
     
     
  • Hi, I had 4 rounds of FLOT then surgery and got quite bad neuropathy, especially in my feet. The chemo and surgery were very successful and i had no lymphs with any cancer and good margins around where the tumour had been. The oncologist decided against giving me more chemo as they were worried i might not be able to walk after. I completely understand your fear and i have not really got my head around if we've made a mistake or not. Ive been accepted into a trial and will be tested with a CT scan every 6 months and annual endoscopies. So this provided some succour but the fear is there that the cancer might come back. 

  • You could try Suzzipad cold chemo socks & gloves to wear during chemo to keep feet & hands cold. Or my son used cool packs the sort you get for cooling first aid injuries to put on his feet and held them on with cheap temu galoshes a couple of sizes bigger than his feet. This was to prevent neuropathy as the cold packs help keep the blood vessels constricted and the chemo chemicals away from feet & hands. Similar effect to cold caps that prevent hair loss. Son had mild neuropathy in feet after first chemo session, but none in subsequent rounds after using the cold packs.

  •  I always look out for your comments as you are two months ahead of my husband  and the circumstances are very similar. :) 
    He had TG surgery on July 5th, and the first oncologist visit is tomorrow! 
    Surely the window for post-op chemo is closed already. My worry is it will be a very fiery meeting, as my husband didn’t want post-op chemo to start with. 
    The pathology came back with no lymphs, good margins, the surgeon was super pleased. 
    So either the multi-functional team decided he doesn’t need post-op chemo, or somehow the decision and this first appointment was delayed, anyway the odds of cancer not coming back would only be improved by 1-2% with post-op chemo. In his head it wasn’t worth another 4 rounds of FLOT.

    He is in the same study, but was randomised into control group, so the first scan after a year, I think.

  • It’s very similar, when I went back for the oncology meeting I was prepared in my head to go through 4 more flot sessions. Even though I was dreading it I thought it was the safest thing to do. I asked if I could have it by mouth and and discussed the neuropathy, which is still quite bad. They kind of changed their minds during the meeting, saying that more chemo might stop me walking. Although I was happy to not go through chemo again I wonder if I should have insisted on having it. 
    they don’t seem to have many stats on post op chemo as it would have been handy to know what my risk increase was. Let me now what he decides

  • Well Peter, my husband had a TG nearly 2 years ago, he didn’t have chemo before or after, the surgeon said they don’t give it to over 75s as they don’t do so well with it (Notts hospital) he was stage 3 no lymph nodes involved. 
    It is a worry for me him not having chemo at all but he doesn’t worry and doing absolutely fine at the moment. He also has 2 other cancers but that’s not the reason he didn’t have chemo. 
    Just thought I’d let you know and good luck xx

    Sue Xx
  • Hi, thanks for sharing this, mine was stage 3 No lymph nodes, I had pre and post chemo at 60, I don’t understand why they would treat a 75 and over any different as it’s not an old age in these times.

     I still have some tingling in my fingertips but it’s manageable and doesn’t affect me that much.

  • Sorry to hear he has other cancers sue, I was diagnosed at 59 which is probably why they gave me chemo. Thanks for this, hope you’re husband does great 

    • I know for a fact that Notts don’t or didn’t give chemo to that age as someone else who had his Osophagus removed also didn’t have chemo. Regret to say that person died and that’s what scares me, he’s just had another 6 month phone call, that’s all he has. He’s 81 and as I said doing well. 
      His other 2 cancer Peter are Kidney (he had that out 5 years ago and finished with urology now) also non hodginks lymphoma, that was found at the same time as his stomach cancer picked up on his last CT scan for kidney cancer, he had no symptoms for stomach so we’re pleased he was still having CT scans for kidney.
    • Good luck all xx
    Sue Xx