Hi all.
So I’ve just got to the end of week 2 chemo-radiotherapy and following checks with nurses at clinic today iv got the decision to make about continuing with receiving cisplatin chemo as it has caused tinnitus and reduced hearing in my left ear. Dr and nurses have pretty much said it’s my decision, to carry on with chemo and risk further damage or to stop chemo and just continue with the remainder of my radiotherapy. I dunno what to do… Anyone had same?
Cisplatin has not agreed with me at all, worse nausea, ringing in ears etc and generally floored…added into the side effects of radiotherapy and I’m pretty much a worn out rag.
My gut says stop cisplatin and power on with radiotherapy and brachytherapy and that maybe without the chemo I will have some positive fight in me to get to the end…
I have until Monday to make my decision!!
Lynzie
Hi Lynzie:
I hope your doctor gave you way more information than you have shared on your post if he/she is expecting you to make a decision. I have no experience with this, but this is what I'd want to know if I was you. Maybe you know all this, or maybe this is not how you make decisions, but I'd need to know.
What is your staging? If you stop chemo and just do radiation, how much less effective is your treatment? Can they tell you what that means is terms of likelihood of destroying your CC/ recurrence chances? Is there another chemo drug they could use that wouldn't cause the hearing loss? Cisplatin can cause hearing loss as you have found, but others dont. Can they know if it's permanent? If you drop the chemo, complete the radio and brach, and God forbid, it doesn't do the trick, could you do the chemo then?
I'm sorry but this makes me mad. They are the medical professionals so they must be able to explain the pros and cons to you based on their expertise and experience. They should be able to give you a recommendation based on medical outcomes.
I know you are hating the chemo, but don't let that cloud the big picture. The goal is for you to be healthy and well so that you can get back to living your life. If you don't have all the info you can't be expected to make a good decision, so ask them.
I sound so bossy. I'm sorry.
t x
Hi Lynzie I am sorry to hear you are going through a rough time with the side affects of Cisplatin. Another lady who went through treatment at the same time as me had tinnitus early on they lowered her dose and she was able to continue with 5 chemo's with no further problems. I only had 3 Chemo's as cisplatin affected my Kidneys and my third dose was 25% lower. I dont feel I have any less chance than anyone else and I am stage 2B. The team should be making the decision for you they did for me and Georgiepie and they are the experts. Try not to worry about it over the weekend this is your time to enjoy having no treatment and throw it back in their court on monday. I hope it all works out for you Lynzie i will be thinking about you. Let us know how it goes. Big Hugs xx
Hi Lynzie
my oncologist warned me just before first chemo, that some ladies just don't complete the 5, some by their choice, some by medical necessity/blood tests/kidneys etc, but not to worry as radio and braccy are the main treatments and the chemo is a bonus and just really helps the radio to be more effective. I did no1 very sick! They changed my anti-sickness stuff - much better For no2. By no3 I had tinnitus, but no noticeable deafness, and Dr said hopefully temporary, did I want to do no4, as would need a unit of blood transfusion too as hgb v low. I did and by this time also had the numb fingertips (peripheral neuropathy). No4 all ok, then no 5 more tinnitus and numbness, sore mouth etc (no sickness - phew), which had 2 units of blood for. I am 9 days post-chemo and think already the tinnitus has subsided a little. Still shaky hands and metal mouth, but not too bad.
i agree with Teresa and Kumagill - ask your Drs more questions.
Good luck and hugs
scoops
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Oct 14 heavy period
May 15 heavy and prolonged period - thinking menopause, as aged 45?
Jan 16 really heavy and prolonged period and generally tired, hip pain
Feb 16 haemorraging period for 3 weeks - Doctor!!!
March - gynecologist, hysteoscopy and smear under GA, biopsies taken
April CC stage 1b, MRI and CT requested, radical hysterectomy likely
After scans 2b confirmed, no operation but 28 radio, 5 chemo and 3 brachytherapy
May 16, treatment started
1 July treatment completed!
Thanks for replies ladies, I felt I needed a soundboard with the audience of folk who are going through the same as me, and not family/friends.
Have thought about it, discussed it more and thought again and have reached the decision to stop the chemo. I have already had 5 sessions and the emphasis has again been placed on completing the radiotherapy and brachytherapy. I feel like a weight has been lifted from my shoulders, I had been so unwell with the cisplatin and it was pulling my mood very low too. I feel I can now focus on the remainder of radiotherapy and brachytherapy with a little more energy, amd fight!! I was going to say with fire in my belly but that appears to be more in my bottom and lady garden (eeeeekkkk)
If anyone has any useful tips on handling the loose bottom issue and burning/aching lady area it's much appreciated........ Feel I can't stay off the loo long enough to find any comfort from the pain!!!
Thanks for being amazing ladies xxx
Hi LT :-)
Are you drinking liquid aloe vera? I think that in part the loose bottom is a result of sunburn on the insides of your gut. Liquid aloe vera soothes burns. Having said all that, I was put on a special diet and drank liquid aloe vera and still got diarrhoea, but at least you might feel that you are doing something to help yourself :-)
Be lucky :-)
Tivoli
I have ordered liquid aloe vera so hopefully it arrives soon to help soothe my insides.... I have also ordered aloe vera jelly which I may be applying to outside soon too!! Fri seen me.reach end of.week 2 and it was like someone literally flipped a switch with regards the runs!! I was not prepared for the severity of.it!
Thanks Tivoli xx
