Hi all.I have just found this fab forum and hoping someone can relate to me.At 47 I was diagnosed in 2016 with non symptomatic IV lung cancer with mets to lymph nodes.Had cisplatin and radio that was really successful.
Then in 2020 cancer returned,axillary and neck nodes.Iv been on immunotherapy since Sept 2020.Iv had pain and swelling in the areas since starting,scans have showed shrinkage,then growth,then stable over and over again.It doesn't seem to corresponded with pain levels,when pain at worse scans show reduction?I now have new node on collar along with pain.Last appt with oncologist said he's happy to continue with immunotherapy up until Nov if I remain stable but will change treatment if there is true progression,he explained areas can swell and press on nerves in response to treatment but that usually happens early in treatment as pseudoprogression. So I guess my question is has anyone experienced increased pain and swelling on and off throughout treatment?Honestly no two days are the same.
On plus side tho I do feel really well and still able to do all I want to as normal.
I am very grateful for all the treatments Iv received to date.Sorry long first post.Wishing you all well.
Hi happyhippo, welcome to the group, but sorry you find yourself here.
My treatment is different to yours, so sorry I cannot comment on immunotherapy, hopefully someone who has had experience of this will be along to share their experience with you.
My treatment causes lots of aches and pains, mainly in my legs and hips, and like you no 2 days are the same. I didn’t have pain from lymph glands until I had my covid vaccines. I have just had my 4th and again a lymph node under my armpit has swollen up, and it is extremely painful.
I am glad to hear that you are doing well otherwise on the treatment and are feeling well. I hope you continue to do well on the immunotherapy, xx
Hiya
Thankyou for the welcome.
I have contacted my team regarding lymph swelling,my neck is very noticeable and painful atm.It happened last year aswel, I had another biopsy , then was fitted for my radiotherapy mask ,had all measurements taken,then by time I was due to start the treatment the swelling went and nodes were too small to warrant radiotherapy.Which was great and no one expected the scans to be positive.
It was explained to be pseudoprogression at the time.I have yet to find any information of patients experiencing the same as me.With flares then stable etc throughout treatment.
Think I am feeling a bit more uncertain atm as I am now seeing my 4th consultant this year since my fantastic oncologist who navigated me tough this since 2016 left.Each consultant has a different plan.From one wanting to stop treatment.Then next one said stable and happy with me.Then next one mentioning targeted therapy.This one now says to carry on until Oct unless problems arise.
Oh well suck it up and go with the flow.
Very grateful and Happy to be able to do all things I enjoy.
Wish I'd known 6years ago tho not to stress so much and let anxiety spoil so much time.
I've learnt to stop stressing and guessing.
Well wishes to you all on here
How frustrating, I would feel the same if my oncologist kept changing.
Now that targeted therapy has been mentioned, just put that to one side for the time being. Continue on with your immunotherapy and fingers crossed that is all you will need. You now know you have targeted therapy as a back up if the immunotherapy doesn’t work. Always good to have a back up plan.
It is hard not to stress, every new ache and pain I worry. Lymph glands are painful, and you have my sympathy there. I try to enjoy each and every day, if I have a bad day I know it’s my bodies way of saying let’s take a break. I used to get very down about the days I couldn’t do much, now I concentrate on the days I can do more xx
