Hi, question from a newbie

Hi my name is JJ and I was diagnosed with Epithelial OC stage 1c in Feb 2017.

I'm having 6 cycles of Carbo/Taxil and I'm half way through, three down, three to go. So far not too bad. My main side effect is Peripheral Neuropathy, not numbness pins and needles but joint/bone pain and stabbing in the soft tissues, this cannot be helping the healing of my surgery which was a Total Abdominal Hysterectomy, removed lymph nodes and Omentum. I can't see how chemo is conducive to repairing such major surgery but I'm going with the flow and the recommendation was to start chemo four weeks post surgery.

My question. My Oncologist doesn't want me to take supplements so that I do not "knock out the chemo" her words. I was wondering does anyone take L'Glutamine to help the neuropathy? I am going to run this by her next time we meet but just would like to know if anyone else has tried this.

I haven't Dr Goole'd anything or joined any other forums. I was put off by seeing a fight on another recently but the ladies here seem to radiate a certain warmth so its appears to be a Safehaven!

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21 Replies

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  • Hi JJ Sorry to have found yourself needing to join our forum but welcome. I didn't take a supplement for my neuropathy (nearly 10 years ago) but wen it got too bad they just stopped the Taxol and I think that happens quite a bit. Well done for not googling! Full of statistics etc, but you are not a statistic you are YOU. I do hope someone comes along who has experience of supplements and will be able to advise. Big hugs. Kathy xxx

  • This is one Club I didn't envisage joining Cathy and one challenge I don't remember signing up for but I do find the nicest people have OC so that is a bonus and a blessing. I feel I'm in good company here!

  • I have had a fair bit of neuropathy during my three courses of chemo over the past 11 years, but especially during the first course of carbo/taxol. I can remember that unpleasant sensation of rubbing my skin and feeling that nasty tingling. I found that a combo of paracetemol and warm baths helped. It does recede once the chemo stops but some of us get residual and unfortunately permanent neuropathy. In my case in the tips and sides of my fingers, which I barely notice now. I can feel it right now when I focus on it! Most Oncs will steer you away from supplements, which often have active ingredients that might interact with the chemo drugs. It's always best to check. Whether you follow their advice is a personal matter of course but please be cautious. I am currently on a clinical trial and supplements are a complete no-no. My trial paperwork even lists specific supplements that must not be taken. I too was worried about starting chemo three weeks after major surgery - but that timescale is pretty standard.

  • Thank you for your input Alstroemeria. I'm going to be cautious and realistically, I'm probably too scared not to follow the advice about not taking supplements. I don't want all this chemo to be for nothing!

  • Hi JJ, as others have said sorry you've had cause to join this forum (& also so sorry you've witnessed such unpleasantness elsewhere!)

    As you'll know the op is a big one and so does take quite a long time to recover from- I don't think much is talked about surgical adhesions but many of us experience the effects of these for varying lengths of time.

    My experience was like yours that my oncology team took a very cautious blanket approach to supplements (ie No!). I think the issue will be the lack of clinical trial evidence that will demonstrate no harm done. Some teams will support and even encourage access to reflexology /acupuncture etc and might be worth considering.

    You may also find that there is useful information on the Penny Brohn website- it's a long established charity in Bristol which has a holistic approach which works alongside medical practise.

    Chemo seems to cause the joint/bone pain you describe for many of us. When I met a lovely group of women who were similarly recently finished treatment we recognised in each other that early morning stiffness and tentative walk at breakfast especially!

    Try to walk little and often and take good care of you- you'll likely be surprised how quickly you will recover from it all once you're at the end of chemo.

    Very best wishes, Sx

  • Thank you Sunfleury

    I was wondering whether I may have a couple of adhesions. The discomfort after the third chemo last Thursday was particularly unpleasant. My abdominal muscles themselves were very tender and painful and the skin had the sensation of burning just like the first few weeks post op. I imagine as chemo affects the nerves, its pretty obvious that it will interfere with healing.

    I only have the bone/joint pain on day 3-6 post chemo, and then it goes away, is this normal?

    When I have it, two Paracetomol doesn't take the pain away and I cannot sleep for more than 2.5 hour intervals but after day six, I feel perfectly normal apart from the surgery discomfort. JJ x

  • I think everyone starts to find a pattern to the side-effects post chemo. Are you keeping a note/diary of them? It's definitely worth either discussing the pain when you next see your oncologist or ringing the helpline to the chemo unit as they will likely be able to suggest or prescribe better pain relief. The sleeplessness/restlessness during that period is really common but again it's worth mentioning if it becomes difficult.

    Anything that causes especially new or unpleasant effects is also worth ringing through to discuss with the unit so they can rule out infection etc. Don't hesitate to call them if you have any future concerns!

    Very best wishes, Sx

  • Hi Sunfleury, excellent information thank you its very helpful.

    I was having reflexology all through my treatments till I went on this last chemo & the tingling in my feet has made it impossible for me to carry on with reflexology. I felt the benefits of reflexology & would recommend it to anyone.

    On the radio the other day they were talking about acupuncture helping people with the side effects of chemo. I was woundering if acupuncture would stop the tingling in my feet. I tried it years ago for back pain I can't say I have thought of it for the side effects of chemo. I am now looking into it if only because I want to get back to my reflexology as soon as I can.

    As for the Penny Brohn website sounds worth a look into.

    I wish my onc's would guide me through the things that I feel are important like: should I take supplements while on chemo, like golden paste & can I go swimming on chemo? But the answer from my onc is, it makes no difference if you do or decide not to. They believe nothing works only chemo. Thanks again take care Cindyxx

  • The advice that I had re swimming was not to during chemo because of possible risk of infection.... Sx

  • Hi Sunfleury,I went swimming just before starting chemo while on holiday with my grand daughter.

    Now back on chemo I will listen to your advice because my onc trends to only know about treatments & I get more information for other staff which is slightly worrying. No one has mention infections but I have my head screwed on so will ask on here more often. Thank again live Cindycc

  • Hi JJ- bravo to you, half way through treatment! 👍🏻

    I too suffer from peripheral neuropathy. More hands than feet. I take Gabapentin. It's questionable how much it helps. I learned of Glutamine well into my treatment. I was told that its most helpful if taken at start of chemo- works for some and not others. Wish I knew that in advance. 😡

    I did ask my oncologist's resident about it. She said there was no problem taking it but wasn't overly positive it did much. I would confirm with your Dr (as well as right dosage for you), but I haven't seen anybody say their dr said no.

    If you find anything to help- do come back and share!!

    Just for context, I am being treated in US at UCSF, a top 10 cancer center and teaching hospital. My Onc has cut out a few of my supplements but otherwise pretty open.

    Keep us posted if you find anything helpful.

    Anne 🌺🌸🌼

  • Hi JJ, I did a lot of research on L-Glutamine and my oncologist said I could take it but didn't seem to think it would work. I take 10mg 3 times a day-so 30 mg per day, from 3 days before chemo until 10 days after. I read that it is important to have it in your system before the chemo starts. I have had the odd bit of tingling and had burning feet after the 3rd dose of chemo but it all went away quite quickly. I'm now approaching 5th dose of chemo. So it seems to me that it is working although I will never know as I may not have had much neuropathy without it. I found an article that explained why it worked and it all made sense though I can't remember what it said now. I think it is well worth trying and it doesn't interfere with chemo.

    My chemo started 8 weeks after my surgery and I had a lot of pain-especially around the site where my stoma was created. As the wounds have healed the psin has lessened but I have become more tired with each chemo session. Hope this helps and good luck with your treatment, Wendy

  • I suffered terribly with what you are describing during first line chemo. When I had to start same drugs again for second line I told her I was worried that I wouldn't be able to cope with that level of pain again. After a discussion, she told me that she would give me additional steroids as that can help with then pain you describe. So instead of the usual couple of days dose that you get home with you I was given a weeks worth on a decreasing dose. I must say, it worked. Speak to your oncologist. Ann xx

  • Morning lovely,

    Your story is exactly the same as mine, except you are a cycle ahead of me. I didn't start chemo until 8 weeks post op. Tummy feels ok. But, I had the awful pains and aches day 3-6. I took paracetamol and ibuprofen although they didn't get rid of the pain all together, it did ease it a bit. Heat packs also helped on my legs. I also increased the potassium intake in my diet.. Kale, white beans, bananas etc .

    Good luck with the next round and wishing you lots of happy healthy days to come

    🌻🌻🌻

  • When I did the same exact regimen for clear cell OC stage 1c or 2c (depending on doctor) the nutritionist at the oncology center of my hospital had everybody on l- glutamine. This was part of the regimen approved by the team. I was told NOT to take other supplements without running them by the team and most supplements were a no as they interfere with chemo. The l glutamine however in powder form taken 3 times a day mixed with water was part of our standard to hopefully reduce the chance of neuropathy. I can't say what I would have suffered if I wasn't on the l glutamine but I still had neuropathy significant enough after the 3rd and 4th cycles that my dose was reduced for the 5th and 6th cycles. 3 years later ( I go for checks this week cross fingers and toes I am still NED) I have occasional mild issues in feet that are not functionally limiting. A PT told me to rub bare feet on a carpet and that helps! I also did a purge of all my shoes and flipped anything remotely tight or pinchy. Still need to replace some of these. Be comfortable and give your toes room to move. I can't wear sonevstules I could before chemo. My gastroenterologist also thinks the taxol affected my bowels and called it intestinal neuropathy which I had never heard of as I have issues with feelings of incomplete evacuation and perhaps some reduced sensation. I take fiber supplements etc to help this. I am glad I took the l glutamine bc don't know if things would have been worse and I was assured it does not interact with the carbo/taxol. I got mine off amazing. I believe the brand was pioneer. It was not that expensive when bought in bulk. I needed about 6 to 8 jars of powder to get me through about 8 months to 9 months. I continued the powder for about a month or 2 after chemo. Good luck and Godspeed to all of us on this journey!

  • Thank you Spencer2016 and Neona, I'm beginning to feel very positive about L'Glutamine. It may not work for everyone but it seems to be safe. I will run this past my Onc but I do know they don't like supplements. As a Mature Athlete, I take many supplements (AC&E, calcium, Vit D, Vit C, chondroitin etc.) to be in peak condition. I was told to stop before chemo and I did. I'm still training 5x a week for an Endurance cycle ride next year in the Pyrenees so I am trying hard to avoid the lasting neuropathy. I did a 10k Run after the second chemo, I'm trying to keep as much fitness as possible. Just horrible to know what chemo is doing to my body after looking after it so well but then the option of not doing chemo, wasn't worth the risk.

    After reading so many stories on here, I'm also mentally preparing myself that this may be a life long battle so I better get comfortable with being uncomfortable.

    Hope you all have a good weekend ladies x

  • Ps - for joint and bone pain here on the US at my center anyway I was told to take Claritin an OTC allergy med when I called in sobbing with pain. Have no idea had it works but it did help.

  • Wow Martina18, that's an interesting one!

    Who knew!!! 😁

    I'm allowed Claritin for hay fever. Lots of Rapeseed in the fields right now.

    I'll be giving that a try! Xx

  • Thank you thesilent1, chezp and martina18 for your input.

    What a fabulous group of people you are. I feel like a beginner on a new course and you all (unfortunate to be in this club) have so much information to share.

    For the next chemo session in two weeks, I'm going to mentally prepare my head by telling myself that I just ran a marathon. Achy joints and muscles, sore toe nails and fatigue will be par for the course and I believe psychologically I will cope much better than going down the road of, what am I doing putting all these chemicals in my body. That takes me down the road of oh I'm ill! and then, why am I ill? oh I have cancer! and then the black clouds starts to form. Two days after my second chemo I did a 10k run for charity so between day 3-6 psychologically I just thought, yes I feel a bit battered it will pass in a couple of days.

    Does anyone else have interesting coping strategies JJ xx

  • jj56, put ice on your hands and feet during chemo. I iced my hands and took large amounts of L Glutamine. I have NO neuropathy in hands and minor neuropathy in feet which has almost completely disappeared 9 months post chemo.

  • Great advice Telsa_7 thank you!

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