Advice about chemo symptoms plz

Had 2nd chemo carboplatin/taxol last wed so now day 7. After effects of 1st chemo was horrendous and this one seems to be following same form. Appears to go increasingly downhill after 2nd day and stays on a nitemare plateau for 2 weeks Having had numerous water infections in the past i feel as if this is big part of the problem. Had anti biotics last time although there were no cultures grown. Still no cultures on sample but mentioned white cells. onc wasn't much help said I appear to be unkucky n havin more side effects than usual but this is the treatment.. Ward doc was more helpful saying I have all symptoms and I probably have uti even tho no cultures grown. Given buscapan to prevent spasms and ibuprofen. Thought I was determined and a fighter but am really worn down now and don't think I can do this again. Painful knees and numb fingers now as well. Any advice would be appreciated. Xx

30 Replies

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  • Hi Chriss,

    I am sorry you are going through this, but I think it is pretty much par for the course and the side affects you are having I'm afraid are more common than what you are led to believe, there is a pattern though and the first few days are not so bad due to the steriod tablets once they are finished it is pretty much down hill until the third week when things are a little better then it's time to have chemo all over again. If you can recognise the pattern it then makes it easier to cope with, rest as much as you can wrap yourself up warm, I bought an electric throw which was cheap to run, and is a throw not a blanket, so didn't look out of place in the lounge....or use hand warmers, heat pads or hot water bottles...I ached all over and had horrendous pains and even came out in bumps in various places (arms legs etc) I have had two lines of chemo, and both times I was really poorly, the second tine I was also violently sick (which I wasn't the first time) I hardly went to bed as night times were worst but I got through it and I am now in remission for a second time, so I would say it is worth sticking with it . Sending you best wishes love x G x

  • I think we might be at the same hospital...Clatterbridge? xx

  • Tanks for your reply and tips. U have had a terrible time also and I admire your positive ness. I am treated at Wrexham maelor although I see we live quite close. To care xxxxxxxxxxxxxx

  • I had carboplatin only and although I only had one session, I suffered every side effect going, the oncologist said I was unlucky and that some people tolerate it more than others. I felt exactly the same as you, have you spoken to your specialist nurse? They can be so helpful with tips and advice, plus they will speak to the doctor for you if need be. My oncologist said a lot of those symptoms can be a result of the steroids.

    LA

  • Thanks for your reply - interesting about steroids and will explore that one. I spoke to the Macmillan nurse today who advised painkillers although she suggested perhaps antibiotics as preventative and also possibly advice with urology as I may have a very sensitive bladder. Not sure who will make this decision tho - havent got my usual energy to be pushing at mo. will be speaking to her again on fri. Difficult to know what is really the culprit and she is at a loss really. Hope u continue to be well. To care xxxxxxxxx

  • Hi Chrissy, I suffered the same as you are doing and didn't think I could carry on

    with more treatments.BUT I did, my oncologist used to tweek the dosage a little

    to see if she could reduced some of the symptoms,it did get a little better...but not

    much. There is nothing more I can say for you that Gwen hasn't already said. I

    think people who don't get a bad reaction are extremely lucky. My onc did prescribe

    gabapentine (think thats the name) they are really good for the pain.

    I was told my symptons were due to the taxol. All I can say is hang on in there it's

    worth it in the end.

    Best Wishes

    Angie x

  • I don't think the oncologist likes focusing too much on the side affects, as their job afterall is to treat the cancer, this is why they play it down, and make it seem as though you are the only one with the side affects, I can understand this, as their aim is to get you through the treatment...then they get a result...I don't think it is anything to do with the steroids as the steroids are only taken for a few days..I could understand this reasoning if they were taken for longer because we all know that steroids are not good taken over a longer period...they are never going to admit it's the chemo as it is all they've got...and I am glad they've got something which at least has put me in remission...like Angie says it's worth it in the end...and it will become a distant memory..love x G x

  • Thanks for your support. Will hang on in there. xxxxxxxx

  • Tanks for your reply xxxxxxx

  • Tanks xxxxxxxxx

  • Hello Crissy,

    Oh my dear luv, you are sufferring arn`t you dear, but if it makes you feel any better you are not alone. I had carboplatin/taxol and suffered with the most horrendous side effects with every one, each being just as you described.

    Pre-diagnosis I had hardly any symptoms so I, like you wonderred whether this treatment was actually going to be worth so much suffering and pain.

    All I can say to you now is stick with it, its only less than six months of your life and once you get over the last and hopefully final chemo your health will soon pick up again.

    I was pre-warned that the chemo would give me hell and back because I suffer from ME/CFS and fibromyalgia. The thing is I had to tell myself it was either push myself through it or maybe die. I finished my last chemo in April 1011 and now I am so glad that I stuck with it, I hate to think what may have happened to me if I had given up on the treatment.

    So, each time you feel like giving up on the battle remember you are not on your own with this, we do suvive the course and with each session you will notice a pattern as Gwen said.

    Keeping a daily diary is also worth while. Although it doesn`t get any easier I do think once we get used to what we can expect, it does get less scary each time and we know that the first 2 weeks will be the worst of all.

    Ask as many questions as you feel the need most of are able to realte to you and share.

    Love with hugs from Tina xxxx

  • thanks so much for your comments - it means a lot xxxxx

  • Tanks for that it really helps to know that one is not alone in this. Yours and everyones comments have really helped. Xxxxxxxxx

  • Following on from what Gwyn has already said, you need to work out strategies for yourself so that you can get through the treatments. One by one, we have all found out that oncologists give out information to patients on a piece meal basis, often not enough to equip us with the essential knowledge of how to cope with the whole process of coping with chemotherapy. It is a steep learning curve for many of us as having chemotherapy is something that none of us thought would ever happen and therefore your feeling of having entered a nightmare is very common and understandable.

    At the moment, you would like to call a halt because you see the challenge as insurmountable. Next time, you will be half way through the course and after the half way point, there is light at the end of the tunnel. By the 4th treatment, you will find that you are able to grit your teeth and carry on as the finishing post does not seem so distant.

    In the meantime, please recognise that you are not alone, although this can feel a very lonely journey at times. In a sense, it is like childbirth ........ no one can do it for you. It helps to think about the pattern of side effects that you are experiencing and how best to deal with them. Pain sets in once the beneficial effects of the steroids wear off, 3-4 days after the dose of chemotherapy. You need to start the painkillers before the pain gets hold and it is important to take them regularly. Strangely enough, daily walking helps to disperse the leg pain and this was a recommendation given to me by a physiotherapist.

    The UTI problems may be an independent issue. If you have a urinary infection, you are going to feel tearful and less able to cope as this is what happens with cystitis. Cranberry juice often sooths an irritable bladder and a high fluid intake would help. Much abdominal discomfort is caused by constipation, a well documented side effect of chemotherapy, and most oncologists recommend Movicol to soften the stools. Again, you need to be ahead of the potential problems and start taking Movicol early on.

    Numbness in the fingers can be helped with extensor and flexor exercises of the hands. The details of these exercises are available on the internet, and I found that they worked. This was the suggestion of a physiotherapist whom I consulted when I felt that the oncologist was not coming up with answers about how to cope with the realities of the side effects.

    As Gwyn has said, try to stay warm in this cold weather. Your haemoglobin is now reduced, a normal consequence of the chemotherapy, and this will make you feel colder than usual.

    Finally, it is possible in some cases to reduce the dose of the chemotherapy, depending on how well the CA125 level is responding. By round 3, the oncologist decided to reduce my dose of Taxol by 25% and I found that I was better able to tolerate it.

    Help is at hand here on this site. You will get through this journey. So many bewildered, frightened women, including myself, have struggled through treatment for OVCA and the astonishing thing is that at the end of it all, one emerges as a stronger person and you too will be stronger than you think.

    Best wishes

    Isabelle

  • thanks for the great advice - it seems being ahead of the game is key here and i have took that on board as everything else i have started has been after the events. thanks for the support - and i'm now getting terribly tearful - dont know where that came from - think i've been trying to hold back - probably becuase i'm always the strong one around here and now i dont know who i am. tnks again xxxxx

  • Dear Chrissy

    I'm so sorry you're feeling rough. It must seem as though this will never stop. At least you've got 2 under your belt. As Gwyn says it's all they have at the moment to give us some remission.

    I had carbo-platin alone and had absolutely no measurable side-effects. I know I was really lucky. I don't know if it's an option now to ask if you can have a taxol holiday. Apparently taxol does 5% of the work, carbo-platin 95% of the work. Taxol attacks the cancer cells at a different stage in their development so improves the cover of a single dose of chemotherapy.

    I was originally offered carbo-platin for 2 doses, then carbo-Platin and taxol for four more doses, and taxol alone for the final 2 doses. Due to an admin error I only had csrbo-platin right through.

    If you can bear it I would say stick with your prescription. It does give you the best chance. If not perhaps you could ask about having carbo-platin only.

    In some respects I get the feeling that chemotherapy accentuates any ongoing problems because it reduces the body's immune and coping system. Next time I have chemotherapy I will have arthritis to deal with as well. I'll certainly be asking how chemotherapy is likely to affect this. Unfortunately the choice we have at the moment is rather frightening and refusing chemotherapy is not one I'd risk.

    I'm sending a massive hug to you and lots of love. Keep posting if you feel it helps. We're all hoping you feel better soon.

    Loads of love xxx Annie

  • tansk annie for your support xxxxxx

  • Poor Chrissy ... Chemo is utterly sh#tty isn't it? I think I agree, your side effects are about normal unfortunately. Little choice but to grit teeth and try to treat each one individually - there's no magic bullet to reduce them all as we are all so different. I was really lucky not to get any nausea but managed to get pretty much everything else - from full anaphylactic shock from the taxol downwards. After that one most of the others seemed lower impact. The numb and sore nerve endings in feet etc you do adapt to though they aren't fun, there is loads they can do about sickness - and the onc can slightly lower dosage which some people find directly lessens the strength of the body's reaction - I refused this as I decided I preferred maximum effectiveness to lessening the chemo effects.

    Hang in there - it may start to seem like its going last faster soon as things get to be a routine, that took a few sessions for me! Good luck - we all know how you feel

    Love

    Sue xxx

  • thanks sue xxxxxxx

  • Dear Chrissy ,

    So very sorry to hear that you are having a pretty bad time the chemo does effect us all in different ways and you are having it rather grim .

    I expect you are drinking lots of water ..I have said on here many times before ..it was my best piece of advice that was given to me by a lovely lady who had been through it before me ..I drank at least 2lts a day if not more ..plus I asked my oncologist about taking a protein powder called Glutamine to help protect against neuropathy ..he said it was ok for me to take it and I did ..Fingers and toes are fine after having the combo of carbo /taxol last year ...

    I do so agree with Annie in that if you can stick with it ..it will give you the best chance ..I myself if needed would have no hesitation in having it again .

    Isabelle is so right in saying that daily walking does indeed help to ease the leg pain I too had that very same advice from a talk given by a physio at our cancer centre at our local hospital .

    Walking daily when I and the weather was ok last year as I started in Feb 12 did me the world of good ..just to get out and do something positive was a big help and in turn it did my limbs the power of good too .

    Chrissy there is a wealth and a wonderful wealth of warm help and good advice here ..so glad you have found us ...

    Take good care now .

    Love Jan xx

  • tnks jan - i am drinking so much water i think im drowning!! i do enjoy walking my dog and have tried to keep this up - but it has been out of the question of lateaas could barely walk to the toilet however i do intend to get out asap - feeling a little brighter today which is a postive but must keep morale up. thank you for your support it means a lot xxxxxxx

  • Sorry you are going through this Chrissy but as so many people have said, it is the usual pattern. I found that the first cycle took me longest to recover from. After that I was given stronger anti nausea medication and though I still felt like hell for several days I was able to calculate when I would start to feel better and would concentrate on that. The worst thing was not being able to sleep so my brain didn't get any rest. My husband used to try and cheer me up by saying "If its hurting, it must be working."The UTIs will be making things worse so you should complain loudly to your oncologist about this. (I haven't quite get rid of my post catheter infection yet so I know they can be hard to treat but they should be trying.)

    Plan little treats for your good days and bigger treats for when you finish the chemo.

    Let us know how you are doing.

    Love Mary xxx

  • thanks mary, i do think that there is something going on with my bladder that is causing more havoc having experienced problems in the past - ever since difficult childbirth. the oncologist was not any help with this although the macmillan nurse feels i might just have a very sensitive bladder and thinks the buscupan might help relax things. i think i will take it before next chemo to see if that helps and perhaps push for an appointment with urology. thanks for your support xxxxxx

  • Hi. Chrissy

    Everyone has given you lots of advice, I like Annie have not suffered too badly from side effects but my oncologist reduced my taxol dose after the first one and I have tolerated it better with the second two. Since my surgery in October my bladder has been more sensitive and often feel like I am on the verge of a UTI, I expected this to a certain degree and it is worse in the week or so after the chemo. All I can send you is lots of love and that we all react in different ways at different times, I have two colleagues also having chemo and it is amazing how we vary in our reactions. I am just focusing on what I hope will be a positive outcome and riding the effects as best I can to achieve that I wish you all the best and all the courage in the world to keep going, it will be worth it.

    Love Amanda

  • thanks for your comments amanda, having had many UTI's in the past i know they can be horrendous if they get a hold to the point you cant think, sit, walk, talk or do anything. thanks again for your support - best of luck to you too xxxxxxxxx

  • Hi Chrissy. Sounds as if it would be good to see a urologist for their opinion, as someone suggested to you. I was one of the lucky ones, I am afraid, as I coped with carbo and taxol reasonably ok, though it wasn't exactly pleasant. But you shouldn't be having UTIs all the time - that needs sorted out.

    All best wishes.

    Eileen xxx

  • Thank for that Eileen. Feelin a lot better today but going to insist on an appointment today. To care xxxxxx

  • Hey chriss,

    I can't help you much on side effects seeing I just had my first of 6 of these last week. But I can agree this treatment that we are taking is a lot harder. So far I've had the uti , numbness feet and hands, and very ache at times. Usually at night the worse. I am a hairdresser so I continue to work. Hope my clients don't get cut. Lol. I've found go and do when I feel like it and rest often. I'm glad to hear other peoples comments that are doing the same treatments. Unfortunately we are clueless unless we reach out and find out. Are you doing this for maintenance and how many treatments are in your plan? Hope it all eases for you! Kat

  • Hi mat

    Don't know how this has happened but this post in from a year ago! Xxxxx

  • Sorry I meant hi kat. !!!!!

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