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After effects of chemotherapy

rickydrickyd Posts: 19 ✭✭

Sorry in advance. Just felt like a bit of a moan. Why don't Oncologists, Doctors etc ever mention the long lasting after effects of chemotherapy? I am still having big problems with my legs and feet (Peripheral Neuropathy) and my final cycle finished last October. I have read in a couple of blogs that these problems can last for 2 or 3 years, so it's not like it's just a little thing. I am one of these people that want to know EVERYTHING, but getting information out of some of the medical profession is like pulling teeth. Having said that, the staff at Addenbrookes, Cambridge are second to none and have looked after me very well.

There we are. Hot flush over. Maybe time for a glass of Malbec.

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Comments

  • jacksprat_x1jacksprat_x1 Posts: 306 ✭✭✭✭

    Hi Ricky,

    I was very fortunate to have been warned of the side effects and indeed after my fourth session with one of the components on my cocktail Oxialiplatin, my Consultant decided the risk of long term damage was too great so asked me if I would like to have that part omitted from the prescription. I said you know best but if you think so I will go with that. He said the main component was the work horse and the extra only made about 5% difference to outcome. He said they were here to make me well not make me ill. Mind you I felt ill on chemo anyway but it did help. I’m just left with mild tingling and numbness now and he said they don’t know if it will go away with time or not. I remember at first the sharp shock of pain if you touched anything cold or if you breathed in cold air the feeling that you couldn’t breathe. I had to wear a scarf over my mouth and throat to avoid it.

    You enjoy your glass of Malbec, very nice too! 🍷

    Lv Jackie 🙋‍♀️

  • rickydrickyd Posts: 19 ✭✭

    Hi Jackie.

    Sounds like you have a really great consultant who is doing his very best for you. I hope it all turns out well for you. In the meantime, I am going to lurch off for another glass.

    Cheers.

  • RobertARobertA Posts: 1,174 mod

    @rickyd @jacksprat_x1

    Hi Ricky and Jackie

    I am very fortunate in that I have not had chemo, but I think it is great that you have both provided so much information about your experiences as I think that most people want to know what they are facing and whether their side effects are normal or not. Reading about your experiences will surely help with that.

    I live in Jersey where radiotherapy treatments are not available. I was sent to Addenbrookes for my treatment and I was much taken by the efficiency and kindness I received whilst I was there.

    So pleased you posted your moan Ricky, this is the place to do it. I think that friends and family don't always realise that it is not over when the procedures have finished. I have started having unexpected bleeding which is a result of radiation damage and it has taken three years for it to manifest itself.

    Haha, think I will have a Shiraz or two this evening. Can't drink beer any more but I am getting taste for a nice glass of red.

    Rob

  • SunshinedaffSunshinedaff Posts: 1,285 ✭✭✭✭✭

    @rickyd @RobertA @jacksprat_x1

    Hi Ricky,

    I remember when I was having my chemo planning meeting with the chemo nurse, she specifically said when going through the long list of side-effects, that they don't necessarily tell us everything as there are so many variables we might not experience them all. So just the 'usual suspects' are given. When I began to experience severe pains in my back, bones etc, I mentioned it, and was told then what it was!

    I also think sometimes dr's etc still may feel telling us absolutely everything isn't necessarily the best thing for us at that time, even though we think it would be. I know with the new data protection laws and the right to know information has changed a lot of this in recent years. I am different to you, in that I didn't want to know everything, as I thought it would be detrimental to my mental health if I were to be told every single detail while I was having treatment. Throughout most of my treatment, I knew very little details medically etc.

    It was afterwards when I was still suffering with some conditions which I believed stemmed from my treatment, chemo in particular that I wondered if anyone else was suffering like me or if I was the only one! It was so reassuring to find others in the same position as I was, not that they had any answers really, but it was good to know I wasn't alone in it. My oncologist have been brilliant in trying to help me.

    I hope you are able to find some relief with the neuropathy, I do understand the pain. It is excruciating at times.

    Welcome to our community, there are so many wonderful people here, I am glad you have found us!

    Lou x

  • rickydrickyd Posts: 19 ✭✭

    Hi Lou,

    You raise a lot of good points about the initial chemo planning meeting. The point I was making refers to the effects you get after chemo has finished. After the last cycle, friends and family think that is the end of it and that you will soon return to 'normal' and wonder why you are not getting better. It seems to me, you are actually returning to the 'new normal' which is a lot different to the old normal. Some of the long term effects can be quite debilitating and, as you found yourself, you wonder what the hell is going on. None of the medical staff seem to offer this sort of information willingly. You have to go looking for it yourself, and you find it on sites like this. I think it's the expectation that is the problem. As you come to the end of your chemo, you think the pain and discomfort is all going to be over and you can think about playing golf again, or planning a few days away somewhere. It's a bit of a shock when you realise you are not physically up for it.

    Thank you for your welcome. I am glad I have found you too.

    Rick

  • SunshinedaffSunshinedaff Posts: 1,285 ✭✭✭✭✭

    @rickyd

    Hi Rick,

    I completely understand how you feel! I said once about having to find a new normal as my old normal had packed up and moved without me! The physical changes have taken me a long time to adjust to, I am still getting there, and it is very frustrating at times. I went from being able to charge around like a loony all day, to hobbling like an old woman, struggling to get up from a chair. It is four years ago that I finished chemo, and things are improving (in the last six months). I have changed medication three times, this last one I am on, so far isn't producing so many side-effects either.

    I was astounded to find how many people were like me, and that was just from the FB page of LBW! My oncologist was surprised when I told her about the severity of my pain and mobility problems, agreeing it is not 'good' living having to tolerate it or just put up with it as if it wasn't going to change, having been through everything to get rid of the cancer! As I mentioned before she has been brilliant and has been very proactive at finding ways to improve how I am. I appreciate not everyone's experience will be the same as mine.

    Lou x

  • FoxeyFoxey Posts: 3

    Hi rick , I am still looking for the old me I doubt I will ever find her I am realising this is me now and I have to do things at a slower pace , I have anxiety and depression which gets in the way of what I want to do and others expectations of me now I am cancer free , I feel I am a work in progress xx Foxey

  • rickydrickyd Posts: 19 ✭✭

    Hi Foxey,

    So glad to hear you are cancer free. However, what some people fail to grasp is that everything is not hunky dory just because you have finished treatment. They kind of expect you to be the person you were before you got cancer, and that just isn't going to happen. Like you, I am subject to anxiety and depression, particularly at this time of year when it is dark and the weather is miserable. I am also subject to waves of emotion as a result of my hormone implant.

    Thing is though, the only person who can make you feel better is you. Friends and family can give you terrific support but, in the words of my lovely granddaughter, if "I'm not feeling it" is the case, then it doesn't work. In your case, you are worried if the cancer might come back. In mine, it is whether it is no longer under control and becomes terminal. So, what can we do? Just get on with it really, as anybody with any sort of serious illness has to. Make the most of opportunities that come along, do things that make you happy and accept that you are maybe not the person you would like to be. There are times when you want people around you. There are times when you just want to be own your own. Just take it as you find it and do your best to have a happy and fulfilling life.

    Sorry if I've droned on a bit, but I feel better for it. I'm just coming out of a melancholy phase. But hey, the sun is shining, it's stopped raining and I am going to get my boots on and go out for a walk. It's Spring and the world is coming alive again. I'm going to go along with it.

    Take care and all the best

    Rick xx

  • SueGabblingSueGabbling Posts: 3

    Hi Ricky

    I want to thank you for sharing your personal experiences, it has been a great help to me, I was given the all clear for non-hodgkins type B stage 4 spinal lymphoma last week having gone through 6 R-CHOP & 2 high level doses of Methatraxate, ended 6 weeks ago. But like you was not given the information about the long term side effects and the peripheral neuropathy which I have badly. I was very sick for the last 6 months. It hurts to get up on my feet all the time, my lower legs and feet are a nightmare and lost the feelings in my finger tips, so I tend to drop things. My ribs and shoulder joints are giving me hellish pain, I've only been up 4 hours and it's so bad I will have to lie down again.

    Yes it's great news to know the treatment has been successful, but now I'm wondering at what cost? My family and friends are so relieved that I don't like to burden them with how I really feel! I was a fit and healthy 61 yr old who loved the outdoors and walked everywhere, now I can barely hobble 20 metres with crutches!!!

    I always hope for the best, but difficult to see right now!

    Stay safe during this difficult time

    Sue X

  • rickydrickyd Posts: 19 ✭✭

    Hi Sue,

    So pleased anything I wrote has been of use to you, but sorry to hear you are still suffering badly from the after effects of your treatment. The neuropathy is a right so and so isn't it? But it should diminish with time. My last chemo was October last year and my last neuropathy attack was 3 weeks ago. I certainly don't miss those awful electric shock type pains. Feet & fingers. These always seem to suffer the most but again, it takes time to recover. When you consider how much poison we have been flushing though our body, it is no wonder it seems to go into a state of shock afterwards. A lot of Consultants don't tell you this, and it comes as a shock to you and your friends and family to realise it can be a slow uphill struggle to get back to anything like normality.

    I remember being told I would be back playing golf in no time and I was certainly hoping to be back playing by now. But I sometimes wonder if I will ever play again. My shoulders ache like hell, and my feet don't do what I tell them to. My hormone implant has reduced my testosterone to very low levels and I have lost all my strength and muscle tone. I asked my playing partner if, as a result of this, he would let me play off the ladies tee, but he refused. He does like to win.

    But I tell you what Sue. It's a lovely day outside - the sun is shining - and I'm thinking what a lovely day to play golf. So I will get out on the course again. And you will be able to go for long walks again. You just have to want to do it, and accept it will take time.

    Take care of yourself and stay safe

    Rick X

  • 123123 Posts: 1

    like Foxey my chemo and radiation is over 18 months ago and the cancer has gone thank god but I’m left with anxiety and depression and my hands shake my stomach feels like it’s a nervous wreck I was never like that before and I identified when you said you don’t feel like you anymore but I’m keeping busy and I was a yoga teacher so doing a bit of that every day, I always thought I must have some other illnesses going on so thank you for putting that on now I know it’s from the treatment s x

  • Ruaafa92Ruaafa92 Posts: 6
    edited April 14

    Hi Rick,

    I was diagnosed with leukemia “Acute Lymphoblastic Leukemia” 2 years ago and underwent a bone marrow transplant. Before the transplant I went through chemotherapy and one of the meds that were given to me was “Vincristine”. They did not tell me that horrible body pain and not feeling my fingers again was one of the side effects during the treatment. Once I developed the neuropathy symptoms, they stopped the medicine immediately and continued with the other ones.

    They prescribed for me Gabapentin to reduce the pain and it worked. 6 months after stopping Vincristine (although I was still under Spine chemotherapy) I started feeling my fingers again and the pain went away. I’m now cancer free and 1 year post bone marrow transplant.

    What helped me cope as well after finishing my treatment was Light exercise until I was able to build the muscles I lost.

    “The new normal” for me was very hard. Especially with having the transplant. Everything in me changed including my blood type, all my hair fell off, all my skin got burned from radiation and peeled, losing my fertility and going into menopause at age 27. For around 3-6 months, I was mourning my old self. Until I got up on my feat again and continued living.

    I hope your healing journey becomes easier.

    take care.

    Ruaa x

  • JudeMJudeM Posts: 3

    Hello everyone,

    I have been reading with interest the discussion re Chemotherapy induced Peripheral Neuropathy (CIPN).

    I completed my treatment in February 2018 and have been left with this condition, and, according to my Oncologist am one of those who is stuck with it.. what a cheerful little earful he is!

    I was warned prior to treatment that CIPN was a risk (along with death and the raft of other side effects).

    My chemo regime was FEC - T and it was a painful experience with "Rare and Unusual" side effects, the CIPN became most marked during the Taxol phase, prior to that during the FEC phase I had very severe bone pain and I still get bouts of it.

    The only treatment offered for the CIPN was Lyrica, sadly I am allergic to it, it makes me very disoriented and dizzy and given I live in a two storey house and can't feel my feet I figured the cure could be more of a problem.

    However, to put it all in perspective, I am alive to whinge about it and certainly would not have been without the treatment.

    I have decided that it is what it is and this my new normal and yes, I have limits I didn't have before but I can still look around and see people who are far worse off.

    I'd be interested to know if anyone also experienced a change of eye colour? my formerly dark brown eyes now have a blue ring around them (I look like a blue ringed octopus)! Also I have haemochromatosis, but since chemo my ferritin levels have remained low whereas prior to chemo I would need venesections every three months.

    Good Luck and stay well

    Cheers

    Jude

  • LouiseJLouiseJ Posts: 678 mod

    @JudeM

    Hi Jude,

    Welcome to our community, it is lovely to 'meet' you! 😀

    Your post reminded me of my own experience, and continuing experience post-cancer, I know we are not alone, there are many others in the same position. I completed my treatment in 2016, and since that time have been dealing with and trying to figure out what is going on.

    Like you I have realised that this is unlikely to change radically, despite changing meds three times, and am thankful I don't have cancer. I adapt what I do, and the limited mobility I have now, foot and joint pain I try and manage.

    I have not heard of eye colour changing, that is interesting! I had to look up haemochromatosis, I didn't know what it was.

    The community is full of lovely friendly people, we try to support, encourage each other as best we can. We also like to laugh and chat, there is a Cancer Coffe Break section where we hang out and chat about anything non-cancer.

    I hope you are doing ok during the lockdown, and are staying well,

    Take care, hope to chat soon,

    Lou x

  • Chilali1531Chilali1531 Posts: 97 ✭✭✭

    Hi everyone

    All this is very interesting for me. I had 10 chemo rounds in 2018 for non hodgkins Lymphoma B & had neuropathy in finger tips which was annoying but never really painful. I was given the all clear in March but in Nov 2019 I was diagnosed with ALL( acute lymphoblastic Leukaemia) , have undergone 2 months of intensive chemo in hospital & am now on my 5th chemo /9. This time I have worse neuropathy but in my toes. I also get a lot of cold sweats which wake you up at night. All the usual sore dry mouth, numb tongue, no taste etc. I seem to have a problem keeping my platelets high enough ( since Nov I've had 35 transfusions) & immunity is a big issue. I was due to have a bone marrow transplant v soon ( my brother is a 100% match) but he lives in Sydney so now can't travel due to the C virus. Crossing fingers this won't last too long ....

    Despite all, keeping relatively sane- I'm lucky that I don't get depressed easily & have lots of support from friends/family.

    Big social-distanced hugs !

    Ali

  • rickydrickyd Posts: 19 ✭✭

    Hi Ali

    Big respect for the way you are handling your situation. Makes me feel a bit of a wimp. I note that ALL is comparatively rare, so, to get it on top of your original non hodgkins Lymphoma is a huge cross to bear. I hope that the Coronavirus infection is quickly brought under control and you can get your bone marrow transplant from your brother.

    In the meantime, stay safe, stay strong and know that we are all rooting for you.

    Big hugs

    Rick x

  • RobertARobertA Posts: 1,174 mod

    @rickyd

    Hi Rick

    I love reading your posts, they are so positive and helpful. We all need support and encouragement from time to time as we both know and this community is a great place to do it.

    I thought that I might mention that my cancer treatment involved removing all of the testosterone from my body as the cancer feeds off it. I certainly get aches and pains and I also get tired and the doctors told me that I would also lose strength and put weight on around my waist. I have been without testosterone for three years now and I just accepted everything at first. However, a friend of mine suggested I try exercise bands and gave me an exercise programme for them. I do half an hour four days a week and I can say with certainty that I have noticeably improved my strength and muscle tone and with regular walks, I have also kept my weight under control. The best part is that the bands are safe and easy to use.

    All the best

    Rob

  • rickydrickyd Posts: 19 ✭✭

    Hi Rob,

    You are too kind. I am a miserable old so and so really. Just ask my wife!

    I like the idea of the exercise bands you mention. I am suffering quite badly with muscle pains at the moment - particularly in the shoulders groin and thighs. I had been walking 2-3 miles a day until Covid-19 kicked in but, as I have been classed as extremely vulnerable, I have stayed indoors. I now spend all my time thinking of what to eat next!

    Seriously though, I need to get as fit as I can so that I can eventually get out on the golf course again, and exercise bands seem just the thing. I am definitely going to give them a go, so many thanks for your extremely helpful suggestion.

    Take care and stay safe

    Rick

  • Chilali1531Chilali1531 Posts: 97 ✭✭✭

    Thanks for the encouragement Rick & good luck with exercise ! Ali

  • JudeMJudeM Posts: 3

    Hi Lou

    Thank you for your response and warm welcome.

    Just thought I would pop in again and leave a link to some research I have discovered on CIPN. It appears this side effect is not as rare as many of us were given to believe, and while it offers no relief it does explain and acknowledge the condition. I also find it encouraging that plenty of research into the condition is occurring. The link is below:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6471666/

    And Lou, I can empathise with the foot pain, sometimes I feel I am walking barefoot on rocks! (My husband has hidden the axe from me) 🙂

    Sending a warm Aussie G'day to you all. Stay well and safe.

    Cheers

    Jude

  • LouiseJLouiseJ Posts: 678 mod

    Hi Jude,

    Thank you for your reply, I really appreciate you posting that article too, It is very interesting, and I am glad to read I was not going nuts! I always have known it was the chemo that started it, you know that 'knowing' feeling. I will just keep on 'keeping on'! Looking forward to the day I can get back in the water!

    Late evening for you now, I made friends with another member from Australia, it is great to have you here. I love how we can met people across the world that we may never have had but for this community. Where abouts are you? I have family in Australia, in Sydney NSW, my brothers all live there, as did my dad and sister before they died.

    Hope to chat again,

    Lou x

  • 4Gretton4Gretton Posts: 39 ✭✭✭

    @rickyd @LouiseJ @RobertA

    Hi everyone, just been having a catch up. Nice to”meet” some new faces, especially in these strange times. Was interested in all the chat re peripheral neuropathy as this is something I suffer from thanks to chemo. I sometimes have a break from it and then ....hello.. it’s back again, though I’m very pleased to say, nowhere near as bad as when I was on chemo. As my arthritis has become worse,including “trigger finger “ and a slight return of carpal tunnel syndrome it can be a pain at times. Don’t get me started on “safety” packaging eg on bleach bottles, medicine bottles etc!!!! ( Was close to tears the other night when I was desperately trying to get my morphine bottle open when having a bad night.... makes me sound like a junkie!!haha!!)

    That’s what’s great about this group, we an have a moan and everyone gets it.

    Am not going to moan about the weather though... so glorious today. I’ve been very lazy, making the most of it after a waxing gibbous moon , and hence little sleep last night. There was no howling-honestly!! I did have a good old read of my current book which I’m loving....where the cawdads sing... anyone read it?

    All for now. Have a good day everyone xxx

  • LouiseJLouiseJ Posts: 678 mod

    @4Gretton

    Lovely to see you here again.😀

    I agree with you about the community being a place where everyone just understands what we are going through, whether it is during treatment or after treatment.

    Yes, glorious here too, a real scorcher, I am off into the garden again.

    I haven't read that book, I will look it up. By the way we have a community book club, we are currently reading 'You were Gone' , pop over to the discussion to have a look. You are more than welcome to join in with us.

    Enjoy the rest of your afternoon,

    Lou xx😎

  • 4Gretton4Gretton Posts: 39 ✭✭✭

    Thanks @LouiseJ , will check that one out... just realised I misspelled mine... it should be Where the Crawdads Sing by Delia Owens xx

  • TanHTanH Posts: 1

    Hello everyone - I'm new to the LBW community and have been reading the posts above - very inspiring to hear from you all and read about living with CIPN. I'm 18 months post last chemo for colon cancer and have CIPN in my feet, aches and pains all over and get frustrated every now and again about not having the same level of energy and go get 'em attitude/approach to life that I had pre-cancer/chemo. Gabapentin etc. make me a little loopy :) so I choose not to take it. It's good to know that this is a post chemo "normal"! Exercise helps but my sleep is very disrupted. I think I'm only now figuring out how to adjust and nice to be able to just write about how I feel in a community where folks understand. Thank you for listening - am off to enjoy the sunny day!

    ps. where the crawdads sing is a great read!

  • LouiseJLouiseJ Posts: 678 mod

    @TanH

    Good morning to you,

    You are very welcome here, I am so glad you have found us.

    The community is full of very friendly people who do indeed understand each other's perspectives very well. Thankfully, it is one thing that cancer cannot take from us, our ability to empathise and understand how another person may be feeling and experiencing from going through cancer.

    We are always here to listen, share a smile, or a tear.

    I hope you are having a good day,

    Lou x

  • BethbeeBethbee Posts: 5

    Evening all,

    I just wanted to ask how do you deal with the side effects from chemo, immunotherapy, breast surgery & now Letrozole. Oh & menopause symptoms!!! It's so tiring.. X

  • LouiseJLouiseJ Posts: 678 mod

    Hi,

    After going through cancer treatments, operations, and then starting meds is very tough on the body and mind and soul. Worse is when others hear you have completed everything and then think you are magically back to 'normal' carry on as before!

    No!

    I know that isn't how it has been for me, and I know many others here will say a similar thing.

    One of the most important things to do is to be kind to yourself. You have been through a major life-changing trauma. It will take time for your body to recover and gain strength again. Mentally it may take a while longer, to process everything you have been through. It is tough.

    You will no doubt be experiencing new symptoms since starting Letrozole, and the menopause symptoms may be tied in with that too. Hot flushes, aches and pains in joints and bones, etc. Some of it will improve over time hopefully, some a lot longer and others you may always have. It is important to mention to your oncologist any side effects you are having from the meds. They may be able to suggest an alternative, obviously it will depend on your medical circumstances.

    Take things one day at a time, I have had to find a new normal, a new way of doing things, my life has changed. It won't return to pre-cancer days, that life has gone. But evenso, I have found new great things, wonderful new friends that I may never have met. Life is more precious, and my perspective has changed.

    It is great you have found the community, it is full of lovely supportive people, who understand exactly where you are at. You can come and chat about anything, and find others who will listen.


    Hope to chat soon,

    Lou x

  • scotzbabescotzbabe Posts: 3

    I had breast cancer in 2016 and have found it hard recovering from chemo and rsdiotherapy I am goin through menopause due to this and suffer terrible night sweats taking clonidine and sage tablets but not working good. The aches and pains I have in my hands and legs is unbelievable. Doctors offer strong painkillers and anti inflammatories but I'm still at a loss with this and just feel so low all the time. My husband doesn't understand why I am tired all the time when I've not done much. The doctor says it is fatigue which is different. Also was diagnosed with diverticulosis last year and that has seen me bedded 4 or 5 times already this year and that leaves me with hot and cold sweats with stomach pains. Life is just so terrible and I dont see any light at end of tunnel

  • BethbeeBethbee Posts: 5

    Hi LouiseJ,

    Many thanks for your wise words & time!!

    So much of what you have said makes sense. I was told by the breast specialist that I could say goodbye to this year. Which I find difficult as I'd become bit of a Spinning freak!!

    I'm currently having Radiotherapy & I'm back on immunotherapy until Xmas... Patience I need!!

    Hopefully we can speak soon xx

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