Good Morning all,
I haven’t been on here in a while so let’s give you a little background first.
My husband who is 45 was diagnosed with Tonsil and base of tongue cancer in February this year, he then had a PET scan before his treatment could commence but unfortunately the PET scan revealed the cancer had spread to his chest and right hip and he was no longer curable.
He was eligible for immunotherapy and started Pembrolizumab in March this year. His first scan at three months revealed slight increase in neck and chest tumours the oncologist said this could be something called puesdoprogression.
He continued immunotherapy and had his 2nd scan on the 30th September. This was the deciding scan, if the scan showed the pembro was not working then they would stop it and start palliative chemo.
We received his results yesterday- he will continue immunotherapy as the hip is stable and his chest tumour has shrunk however, the large tumour in his neck has grown. They know the immunotherapy is working but the tumour in his neck is just too big for the pembro. The oncology team have now said they want to introduce palliative radiotherapy. They have said they want him to have 13 days worth but could be up to four weeks (odd number) this is due to start in around 4 weeks. We hope the radiotherapy will shrink this tumour so the pembro has a better chance of working in that area.
SO now I’m sat hear reaching out and asking for advice on do’s, dont’s, advice anything that may help him with his radiotherapy and the horrid side effects that will come with it.
Thank you all for taking the time to read this long winded message.
So sorry to hear this Bexx85. It must be heartbreaking for you. I can't offer any advice I'm afraid as I am on a very different journey. However, I'm sure that someone on here will be able to help with advice and comforting words. If you just want to 'chat' anytime, I'm always a willing 'ear' or shoulder.
Hugs
Hazel x
Hi and sorry to hear that your husband will need some radiotherapy, but good news on the other fronts.
It may be that he won't suffer too much with such short exposure to the RT. Many of us only start to have significant effects from the end of week 3. I made it through to week 6 before I started to feel really ill. Fingers crossed.
Try to prepare for the treatment. Much of the advice on here about using E45 on the neck and salt and bicarb mouthwash will still be valid for your husband.
Hopefully he will still be able to eat throughout, but you may want to consider softer foods and Fortisips to add calories and nutrients. He may already be there from what you've described.
Hope that helps. I'm sure others will have additional advice.
Hi Bexx85. Glad to hear the immunotherapy is working on some of the tumours. Hopefully this radiotherapy will be lower down on his throat than his previous on the tonsil so his mouth may not get as damaged. As others have suggested make sure hd keeps his calorie intake up as long as he can get ensure or fortisips on prescription make sure painkillers are on hand and if hex still having the immunotherapy make sure each team is aware of what’s happening. An so sorry you’ve both found yourself bs k on the treatment roundabout. From memory Lyn aka Sophie66 has had radiotherapy twice I’ve tagged her.
Fingers x the radiotherapy reduces the neck tumour to enable pembo to work
hugs and keep in touch
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
Hi Peter thank you for responding. I think it may be a case of prepare for the worst and hope for the best. I will have to do some research on creams and mouth washes. It’s all very daunting and a rollacoster of emotions but my husband David is as positive as ever and takes each day as it comes.
Hi Hazel, sorry I think my original message may have been confusing. The radiotherapy my husband will receive will be the first time.
The original plan before we found out the cancer had spread was to have surgery, chemo and radio but his treatment is now palliative. The consultant wants to concentrate on the tumour around his hypo-pharynx near his voice box, this does again concern me but if it helps then it has to be.
I will speak with his GP to see if we can get some fortisips/ensures ordered in preparation.
Thank you for responding and advising Hazel.
Hi he’s sorry I thought he had already had radiotherapy. Fingers x it shrinks the tumour allowing Pembo to work. I’ve a friend he’s had his 2 years immunotherapy and so far his last 3 scans are showing no progression. He has chemo radiotherapy at the start but got lung mets
hugs 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
I think I may know who you are referring to I think I follow him on instagram. All we can do is hope and just take each day as it comes on this awful journey.
His blog is
https://ansmackay.wixsite.com/uclgeography/blog
my blog below might help,with tips on radiotherapy I found a humidifier in the bedroom helpful got mine off Amazon is was a cool mist one you can ask his team for caphosol to help against the effects of radiotherapy dry throat and mouth plus mucositis my trust didn’t use it but many do
Hazel xx
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
Hi Bexx85 my dad had 6 weeks radio and chemo for his T4 base tongue cancer last year. Hard to say whether radio alone caused the following but it was the last 2 weeks of treatment that really made him struggle.
His main issue was being unable to eat properly and swallow at all. Due to a lack of knowledge at the time he wasn’t taking in calories from the prescribed drinks properly and lost far too much weight. The drinks also aspirated into his lungs which cause pneumonia.
I don’t believe this is common but something to be aware of. Mouth was also very dry, thrush became an issue. He did fully recover and the treatment did work on his tumour.
Unfortunately a year later his cancer has now metastasised to his spine. Started on immunotherapy this week.
Wishing yourself and your husband all the best.
Thank you for your reply, gosh to go through everything your dad has been through to then be told it has returned.
Is your Dad on Pembrolizumab?
The oncologist is not sure whether my husband David will be given 13 days or 4 weeks of radiotherapy yet. It does make me extremely nervous if they go for the four weeks as he doesn’t have a PEG (he did have one before he had PEG scan in preparation for curative treatment but removed after PET scan) We have a appointment with the radiology team next week to discuss mask and what to expect etc. Will have a fair few questions written down before we go in.
Thank you again. I hope immunotherapy has positive results for your dad.
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