Hi everyone xx
I'm new here but just reading through some of the discussions it's really helped me come to terms with things so thank you xx
My husband was diagnosed with tonsil cancer in October. I'm 54 and he's 61. The kids have just left home and we had so many plans for the future and this wasn't one of them! He's never had a day off work in 35 years and his biopsy was the first time he's ever been in hospital so it's a bit of a shock for him.(and me).
He's had 3 weeks of radio and 1 cycle of chemo. He's due a 2nd chemo on Monday but we're struggling with the decision whether to go ahead and have the 2nd cycle? He's experiencing dreadful nausea which seems to be getting worse rather than easing off as we'd expected. That's kind of manageable for now with medication (cyclizine) The worse thing has been the tinnitus which we weren't told about at all in the pre-chemo 'talk'. It's only after it started a few days after the first chemo that I did some research and found it's a really common side effect of Cystaplin. I wish we'd been warned as it may have effected the decision to have the 1st cycle? Anyway... has anyone here suffered tinnitus?
Has anyone had 1 cycle of chemo but decided not to have a 2nd for any reason? Will not having a 2nd cycle dramatically effect the prognosis or not? We were told that if he hadn't been so 'healthy' to start with they would not have given him chemo as well as radio. So does it make any difference?
Hi Jane and welcome.
Talk to his consultant or CNS. If he is getting tinnitus the Cisplatin can be swapped to Carboplatin which is less toxic, but bear in mind that hearing loss can be permanent.
However chemo just adds belt and braces.It makes the cancer more radiosensitive but It's the radiotherapy that does the job so stopping the chemotherapy is definitely an option. There are plenty of people here who didn't have the full course.
I didn't have chemotherapy but the RT made me nauseous all the way through. There are alternatives to cyclazine so do ask. There is likely something there that will suit better.
Best of luck and let us know how you get on
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi- Chemo goes hand in hand generally with treatment and the chemoas sais by Dani is a sure way to pick up any stray cancer cells, I am having both at present for Oesopahgeal cancer and find the Chemo easier than the RT, but he should go ahead and discuss fully with the Chemo Nurses as they are bang on for taking good care and finding the right treatments also always record everything so at your clinic meetings you don't forget to ask anything, you should have been given a record book which lists many affects etc.
I have had 2 types of treatments for sickness feelings but have reverted back to my original one Lansoprozole for acid this works well for me, the ones they were giving me in Chemo just upset my stomach, but there are many they can try
Hope it goes well for him and yourself, I always worry more for the Carer/Partners as you seem to go through it worse than most of us
Take Care
Tony
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Voicebox Cancer- Laryngectomy 2020 and Oesophagus survivor 2022
Adminitrative Assistant at Frimley Park Hospital, Cancer Support Hub
Hi Jane. I didn’t have the sickness with Cisplatin but did experience the tinnitus. As soon as I mentioned it at my second session they changed me to Carboplatin there and then and I had no more problems. Although I didn’t need to, sometimes you have to push for these things.
Hi. I agree with Beesuit. I was actually asked if I suffered from tinnitus before the team decided on my treatment. I had had mild vertigo some years back which gave me slight tinnitus and the team decided on Carboplatin. I still get tinnitus but I don't think it is any worse than years ago. Had the 2 chemo and 30 radiotherapy. No sickness nausea or anything but, did religiously keep up with all meds given. 2 1/2 years post treatment. All the best.
I've been on 2 years from my first cancer and they insist I take it each morning so I would still speak to theOncologist etc
Tony
We will move mountains to help people with cancer live life as fully as they can.
We'll do whatever it takes. For information, support or just someone to talk to,
call 0808 808 00 00 or visit www.macmillan.org.uk
Onwards and Upwards
Voicebox Cancer- Laryngectomy 2020 and Oesophagus survivor 2022
Adminitrative Assistant at Frimley Park Hospital, Cancer Support Hub
Hi Jane FIrstly welcome from me sorry you’ve found yourself in here. I am nowm3.5 years post radiotherapy for tonsil cancer with several affected lymph nodes.Inhad 35 radiotherapy sessions and was planned for 3 cisplatin sessions of 10:hours I had 2 with no sickness but I did get a tiny bit of ringing in my ears. I was told at the start of this possibility so in conjunction with my oncologist I decided not to have the 3 rd sessions. It’s nit unusual in our types of cancer not to take all the chemo sessions my oncologist said at least 66% of his patients do nit have all the sessions ,The radiotherapy is the main even with chemo being a top up. The figures that I’ve had are chemo adds 4% ro overall success rate of orapharangeal cancers. This figure differs for other cancers in many chemotherapy is the main course of treatment.
I too was the fittest I had ever been prior to treatment and apartbfrom having our daughter in hospital I had never been in an operating theatre until my biopsy so was a steep learning curve.
As others have said there are many many anti sickness pills they can be changed. I do know quite a few who didn’t complete all courses of chemo due to varying reasons.
I did get complete metabolic response after my pet Ct scan despite of me not having the last chemo session.,Am sorry you didn’t get told of the possible side effects I know I did get them explained..
I hope you can get with your husbands team and come to an agreement. As Mark says carbo platin chemo may be offered.
Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
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