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Lenvima side effects

UnaUna Posts: 8

Hi.

I’m new to forum and to Lenvima. Well relatively new - on and off it now for a month. I’m getting what I can only describe as razor blades in my throat after 3-4 days on tablets. My dosage was reduced from 24mg to 20mg and then I was taken off them for a week. Back in them now. Throat going again. Have you any remedies? I’ve done bmx and kin. Neither any use.

Comments

  • LouiseJLouiseJ Posts: 678 mod
    edited April 28

    @Una

    Hello Una,

    Welcome to the community, I am so glad you have found us.

    I am so sorry to hear you are experiencing such painful side-effects from the medication you are currently on.

    I unfortunately don't have any knowledge regarding this, I am hoping some of our other members may have some wisdom or insight to help you.

    Have your medical team given you an advice or tips?

    @LizzyB73 , Liz are you able to provide any info for Una, is this something you have come across before?

    Una, Liz is our Specialist Oncology nurse in the community, she has a wealth of knowledge and experience that may help you.

    Please keep in touch with how you are getting on, and I hope some thing will change soon, so that you are not in so much discomfort.

    Take care,

    Lou x

  • UnaUna Posts: 8

    Hi Lou

    Thanks very much for getting back to me. I see from other posts I should really give more details about myself. I have thyroid cancer since 2017. I got surgery and 80% removed and then got radiation for the remainder. I got 3 sessions in isolation for a week over a year with the iodine tablet to clear it up. I have been monitored since 2018 and my oncologist has been specifically monitoring 2 nodules on my lungs. Lucky me (sarcasm) I am one of the very few that my cancer spread to my lungs. I was sent back for another iodine isolation week and it didn't uptake so they were unsure was it thyroid so I got biopsied 3 times and eventually in Feb got the diagnosis that it is still thyroid cancer on my lungs. I have now been put on this - what I believe is - a relatively new drug called Lenvima. After 3 days I got mini ulcers in my mouth - could hardly see them. Anything hot, spicy etc I can't eat. I can't drink tea, can't have butter, oil, bananas - I am trying to monitor what triggers the pain when I eat. I got calluses on my feet with what looks like corns - but they are not corns. Very painful to walk. My dosage was reduced to 20mg and tried again. Still too sore to eat. Took me off for a week and I went back on Lenvima again last Tuesday. I am now getting same side affects. Razor blades in my throat and calluses on balls of feet. I am talking to my oncologist but don't have any solutions for me. I was hoping that someone might be out there reading this that is experiencing same symptoms.

    Thanks again Una.

  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    @Una

    Good evening

    Thanks @LouiseJ Lou for linking us in.

    Una - I am so sorry to hear about what sounds like a totally miserable time you are having on Lenvima. Mouth ulcers severe enough to prevent you from eating is not adding to a decent quality of life for you.

    You didn’t mention if you are other medications that may potentially be interacting with Lenvima or if you have been offered any mouthcare regime to try and help with this symptom?

    I am sorry but I am not going to be much help about the calluses on your feet apart from checking to see if you are regularly moisturising your feet with something like E45 cream?

    Best wishes


    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • UnaUna Posts: 8

    Hi Liz

    Yes they tried BMX mouthwash and Kin mouthwash and neither worked. I’m back in hospital today for checkup for being put back in 20mg last Tuesday. I was hoping this forum would have others going through some like-treatment with same experience. Can’t be only one with these effects. I am firm believer of “ask the question “. Who knows what can come of it. Always worth the ask. I feel I just need to tweek this somehow.

    Thanks Liz.

    Úna

  • LouiseJLouiseJ Posts: 678 mod

    @Una

    Good morning Una,

    When I was having chemotherapy, I was given Difflam mouthwash to help with the ulcers and mouth problems I was experiencing. It may not help for you if the others haven't helped, but perhaps worth a try?

    There is no 'need' to give detailed info about your situation, only share what you are comfortable sharing. You can be as anonymous and brief as you like. This is one of the benefits of our community. I am sure there others here who are also diagnosed with thyroid cancer.

    I hope you get on ok at the hospital today, it is definitely good to ask questions, to see if others have a similar experience and can pass on tips etc.

    Thinking of you today,

    Lou x

  • Blanka_CBlanka_C Posts: 346 Community Admin

    Good afternoon @Una,

    Welcome to the Community!

    I'm so sorry to hear you're experiencing such terrible side-effects. I have no experience with mouth ulcers / sore mouth, however I wanted to let you know that we've written a couple of articles that you might helpful.

    This one in particular discusses mouth ulcers, dry and sore mouth and taste changes, plus includes product recommendations from our Community:



    You can find all of our articles about mouthcare during treatment here.

    I hope your appointment today goes well. ❤️

    Speak soon,

    Blanka x

  • UnaUna Posts: 8

    Hi Blanka. Thanks so much. This is exactly what I need. They have taken me off the chemo drug for a week. They are talking of putting me back on at 10 or 14mg dosage and working their way up to see what I can stand before side effects kick in. My treatment is long term to sustain the nodules rather than eliminate them. I couldn’t continue as I was. I can barely walk my feet are so sore. The nurse said try bicarbonate of soda and soak them so I will give that a go.

    I had a look at your link and I’m going to get the toothpaste and mouthwash. Always worth a try. I had given up on toothpaste and was washing my teeth with water with my electric tooth brush as toothpaste burned my mouth.

    it’s so lovely to get a reply and guidance.

    I really appreciate it

    Thank you so much.

    Úna

  • UnaUna Posts: 8

    Thanks Lou

    will try difflam. I found the toothpaste and mouthwash on this site and have ordered some too.

    appreciate info re details. Dammed if I do damned if I don’t.

    good to talk.

    Úna

  • LouiseJLouiseJ Posts: 678 mod

    @Una

    Good morning Una,

    I am so glad you found the information Blanka gave you helpful. I hope they don't take too long to arrive for you. Mouth pain and severe discomfort is one of the worst pains to experience, it is so draining physically and mentally. I really feel for you. I hope the Bicarbonate of soda treatment gives you some relief too.

    We are here anytime you want to talk Una, whatever it is about, we are here to listen, everyone is very friendly and supportive. Sometimes it is also good to get away from 'cancer talk' having to live with it 24/7 is hard enough, for that reason we also have a Cancer coffee break section where you can chat about anything else.

    I hope things improve for you very soon,

    Lou x

  • Blanka_CBlanka_C Posts: 346 Community Admin

    Hi @Una, I'm glad I was able to help! Let me know how you get on. x

    Also, if there's anything else you need advice on, don't hesitate to post on here. ❤️ Have a wonderful evening.

  • UnaUna Posts: 8

    I’ve never joined any forum before but I feel needs must. I am very encouraged by the very friendly response. Feel a bit of an eejit with my essay but I live and learn. I’m still in a lot of pain both with my throat and feet but usually takes 3 days for effects to subside. So all should be good tomorrow. I will be ready for next round next Tuesday. Thank you all so much for your advice. It is so much appreciated. Úna

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

    @Una

    Good morning Una,

    Please do not feel anything like that about your posts. You are free to write or not write.

    It is great that you are here when you have had a cancer diagnosis.

    When I was diagnosed I didn't join in with anything on any forum, as I felt that was best for me. I think now, should it happen again,( sincerely hope not), I would come here. It is tough facing cancer and everything it brings with it. Having the support from others on here is another strength to help you through it.

    Are you managing with lockdown, wherever you are?

    I really hope the pain subsides very soon

    🙂🤗

    Lou x

  • Chilali1531Chilali1531 Posts: 97 ✭✭✭

    Hi Una

    Ive just joined the forum too. I've had some bad mouth ulcers too - the pain is excruciating sometimes- you'd never imagine it.

    I had NH Lymphoma B in 2018/19 & suffered a lot from them, quite common with the R-CHOP chemo I was having. I was told to wash mouth 6x a day with bicarbonate soda solution which I got from chemist. It didn't stop them but maybe helped. I found the worst ones were under the tongue. Even swallowing saliva & talking was painful. I was told to suck pineapple chunks, preferably fresh but tinned are ok too.

    I got over Lymphoma but 5 months later was diagnosed with Leukaemia ( ALL). I'm careful to use bicarbonate solution & so far have mostly avoided bad ulcers. The chemo is obviously different, maybe that's why. But I know how miserable it makes you feel. So I really hope you find some relief ...

    The foot pain sounds nasty too - I've just got neuropathy in my toes which mostly is ok, occasionally hurts but goes away if I massage it. Have you tried heat ( hot water bottle)? I never go anywhere without one- use it when my sciatica flares up - but that's another story!

    Take care, Ali x

  • RobertARobertA Posts: 1,174 mod

    @Una @Sunshinedaff @Chilali1531

    Hi Una

    I am not able to offer any help regarding your treatment side effects, but I would like to welcome you to our lovely friendly community.

    This was the first forum I have joined too and it was the best decision I have made since I got married. 😉 My friends and family are brilliant and provide all the love and support they can but they need a break occasionally and I found that chatting to other people who are coping with cancer and its side effects made a big difference to my well being as well as taking a little pressure off my family.

    I hope you will keep in touch.

    Rob x

  • UnaUna Posts: 8

    Hi Ali and Rob

    Good to hear from you both. I’m soaking feet in bicarbonate of soda and making huge diff. Nearly back to normal. My mouth cleared but yesterday just as the mouthwash arrived. I will have it for next time and be prepared.

    I’ve started to keep a diary which is brilliant. I keep a note of dates when I change dosage or when I go off tablets or how long effects take to subside etc. It’s really helpful as it’s amazing how I forgot trivial stuff. I bring it with me to hosp and can see at a glance ct dates etc for doc when they ask questions.

    I put in all the suggestions from forum so will have them for next time I get side affects.

    Stay safe x

  • riehrieh Posts: 9

    Hi Una

    I have just returned to the forum after some weeks away and saw your post. I too experienced a hideously sore mouth and throat during my chemo treatment. I just thought I would share what I found helped a little. I had to stop using 'normal' toothpaste as I found it burned too, my husband brought me children's toothpaste to try and that worked (we did have to try a few before I found one I liked and that didn't exacerbate the soreness), my teeth and mouth felt cleaner without any of the burning. I tried Difflam spray for my sore throat which helped somewhat then I was prescribed a two stage mouth wash by my oncologist - Caphosol. I was a little dubious to start with that something that appeared so innocuous would provide relief but I truly feel that it helped, it didn't take away all the symptoms totally however it certainly lessened the miserable time I was experiencing whilst it was bad. The only symptom I never managed to resolve was the taste changes; even water tasted odd - very oily. I just resigned myself that for approx. one week every cycle I would have a very limited diet of things that tasted relatively ok until things returned to normal again. As I said even fluids tasted weird but I found using a straw to drink helped as without it I was struggling to keep my fluid intake adequate. I think at one point I had virtually every type and flavour of squash available in the shops, my husband tried his hardest to help find something I would drink and enjoy, he was an absolute star throughout it all.

    Take Care

    Rie x

  • UnaUna Posts: 8
    edited May 21

    Morning

    back again on the trail for some help with my mouth irritation.

    tried the difflam and it stung so that’s a no no.

    the Ozalys mouthwash is too bland. Not having any effect.

    I am a true believer that I just need to tweek this with not eating various foods that aggravate the mouth.

    tried to find a possible list but no avail.

    I know salty, spicy, hot food and hot drinks trigger it.

    I really think I’m not the only person who has this. Please let me know if you have any suggestions.

    all very much appreciated

    Una.

  • Blanka_CBlanka_C Posts: 346 Community Admin

    Hi @Una, I'm so sorry to hear!

    I cannot give you an advice based on personal experiences, however we've just published a new guide about mouth problems, including dryness, soreness and infections. There are some food tips in there too.



    This longer guide also has a fair bit on dry mouth, plus a list of foods that can help:


    I'm hoping someone on here will have tips / product recommendations to share!

    Keep safe, Blanka x

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