Two and a half weeks ago I finished 6 weeks of chemoradiotherapy for tonsil cancer which had spread to the lymph nodes in my neck. I’m doing quite well. The burns in my neck have healed well and I’m managing to eat a limited range of food, albeit without much enjoyment as my taste is still impaired. The swelling in my neck had shrunk a lot but I’ve noticed it’s start to get slightly bigger again. Is this normal? I have a follow up appointment on May 6th but I’m not due to be scanned to see if the treatment has worked until the end of June. Many thanks for your help.
Hi twoblackcats and welcome to our community.
Yes swelling can happen, often due to inflammation. Lots of things can come and go in the early days. Try not to worry. Anything amiss will be picked up in your check ups and May 6th is not long.
PS
Great name.
What are their names by the way?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Sounds like you are doing really well and I appreciate you posting because I am due to finish my 6 weeks of treatment on Friday. My neck is really sore and has broken out so to hear that yours healed quite quickly once treatment ended is a comfort for me.
Also good to hear that you are managing some food, is that because you are improving or did you manage to eat throughout your treatment.
I am sure the lumps are nothing to worry about and are just settling down after treatment but I agree it seems a long time to wait until the 4 month post treatment scan.
Keeping everything crossed for you
Michelle x
Hi Michelle it’s not unusual for the scan to be 14-18 week after treatment finished the radiation and chemotherapy continues to work for a while then everything has to settle down if scans are done too soon hot spots can still be around therefore giving false readings. Mine was 17 weeks after snd came back with a complete metabolic response which equated to the treatment had worked.
So don’t worry just concentrate on recovery
Hazel x
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 Michelle,
Thanks for your reply. I really appreciate it. My neck was sore and scabbed over for about a week after treatment during which time I wore a polymem bandage which drew out and absorbed the very smelly fluid from my neck. I found that wearing them also eased the pain considerably. After a week I realised that the soreness had subsided and I no longer needed to wear the bandages and once the air could get to my neck it healed within days. It was miraculous. As far as the eating is concerned, I more or less stopped eating by week 2 of treatment and relied on Fortisip to get me through to the end of treatment. I am now managing to eat about 1800 calories a day from a mixture of normal food plus complan. The food I can eat is limited in range and it does not taste great. This is because I can’t taste sugar or salt but it is edible and it does seem to be getting better. The key for me was to persevere. I find protein rich foods like fish as well as single-ingredient foods work best for me. I couldn’t eat something made up of different ingredients like a stew or spaghetti bolognese for example. Please get back to me if you have any more questions. It really is the hardest thing to go through isn’t it.
Chris
Hi Chris I am about 10 weeks out of treatment and today had a proper meal chicken potato and a few veg didn't taste great but a good start , Weetabix covered in milk and microwaved with blue berries or other soft fruit does the job for first meal of the day . All the Best Regards Min
Thanks Hazel.
I knew there would be a logical reason why 4 months or thereabouts would be the optimum time for the scan.
You have explained why and that makes sense. Not much that can be done about the wait even though I am likely to feel in limbo, everyone is likely to feel the same.
I shall be ringing my end of treatment bell loud and proud tomorrow x
Thanks for the reply Chris.
I will have a look at the bandage you used. I have been advised to leave my neck and not cover it up but I think a bandage might be needed at times.
I think you are doing brilliantly, going from Fortisips at week 2 to where you are now. I really hope that you continue to recover at the same rate and have my fingers crossed for you.
Speak soon
Michelle xx
Hi Michelle strange as it may seem personally I was fine with the wait. Oncologist explained why so at 8 weeks post recovery we flew to Spain for 3 weeks. After Christmas had my scan jan results 14 jan and flew away again the 19 th for another 3 weeks. All with oncologist blessings as I was going to our own rental apartment not a hotel so I could make sure I could eat etc.
ring the hell out of bell then hunker down for next few weeks. Ask any questions just make sure you leave hospital with plenty of meds.
Hazel x
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
Thanks Hazel.
I am looking forward to lie ins and not having to run to hospital every day. I still have to see the Oncologist twice next week as they are keeping an eye on my white blood count.
I don’t blame you for going on your holidays when you did, you certainly deserved them.
Roll on the next few weeks x
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