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Hi Everyone, haven’t posted fior a while since having the radiotherapy on my clavical which finished three weeks ago.
it was tough going particularly after 20 days with the mask and some side effects in this area .
then had a CT on the following Monday , got a call to say that the radiotherapy had been effective in this area but there was some small spots on my abdomen which have appeared , Then sent for a full PET scan , results this week.
It is now 8 months since i have been off the immunotherapy due to the side effects which have now all cleared .
whilst the immunotherapy worked last tiime the big question is what options are out there now ?
dont know if anyone has had a similar experience .
would welcome any suggestions .
Hi Ritchie, I’m glad to hear the radiotherapy has been effective. You said you have PET scan results this week, I’m sure they will talk through all your options with you then. Am I right in thinking that you are being treated in Manchester, it’s one of the leading centres so I’m sure you will get every option going including any trials.
Wishing you luck for your results
Thanks KT for the quick reply.
Generally i feel well, still working away and walking the dogs. Yes i am being treated in Manchester . 2 years down the road now and even after all the surgeries and other treatments i still feel relatively positive despite the usual anxious days and waits in between scans.
Feel vert frustrated though that immunotheraoy was working for me with tumours disappearing. The news from the CT scan was a shock though with small spots in the abdomen .will see what happens this week with the PET scan results .
thanks for your support
Hi Ritchie, as they have described them as spots I was wondering if the PET scan was to have a better look at them to decide what they were? They might just be being careful. I’m glad you you seem to have a normal (must be a better word) life with working, walking the dogs and feeling generally positive. It’s the anxious days inbetween that are the downer aren’t they, but I find them more bearable with a treat and a bit of purpose. Today as a treat I am going to see Mamma Mia, and as a treat for my husband I’m going with a friend as he would much rather be left alone in peace to go his own thing !!
Please let us know how you get on,
You do say some funny things and I often laugh, thanks for making us smile as well as sharing info. Its a great combination.
Don't wait for your ship to come in, swim out and find it!
Thank you Sailor2,
The film was very good, although I think it will be better on DVD when you can sing along to it ! It did also make me cry and think about my own mother and daughters, but my hubby had a lovely time watching you tube as there were two launches apparently being shown live. I have decided though I would like to see mission impossible next so I’m sure he will like to see that. The cinema was lovely and cool, thoroughly recommended to stay out of the heat and sun !!
Hi Richie I haven’t posted for a while....busy at work and tbh so good to feel normal again after ceasing all my medications.
I am so so sorryto hear your of your shock following the CT scan.....fingers crossed for the PET. My next scan is in a fortnight, a stressful time for each of us every three months.....like you it’s now been 8 months since they ceased my immunotherapy and they are just monitoring me, hoping the 2 sessions I had and my own immune system will keep the cancer in check......last scan there was no change.
I have been told if the cancer does begin to grow / spread my only option is the BRAF inhibitor, I hope you have more options, prehaps being in Manchester you have access to trails etc that are not appropriate for me.
I am surprised your Onocologist has not discussed all the options / outcomes.....I must admit, I was and still am a little forthright in ensuring I know all the possible outcomes for me.....I find the unknown far to difficult to deal with. So hopefully you can get some answeres after your PET scan and keep talking......we are all hear to listen and support each other.
Hi Jules and everyone.
likewise it is over 8 months since the immunotherapy was stopped for me also , as I mentioned previously it’s was working for me.
The results of the PET Scan confirmed what the CT scan showed, some small spots in my abdomen and another at the neck area ( CT scan didn’t check this area ). The irony is apart from inflammation on my shoulder etc i do feel good. I think my Oncology team were disappointed and they were surprised .
Anyway like all of us i asked what the options are with surgery ruled out . I believe if you stay positive and active this does assist everyone involved .
The options presented were as follows.
TILS Therapy ( does anyone have experience of this or any latest information )- have a meeting to discuss .
Immunotherapy with one drug ( could be Pembro) - this did work on previous IPI/Nivo combination before but of course the risks are their again as before .
Clinical trial - there are some relevant ones running at the moment.
it is very difficult to decide the best option ??? Any advice would be appreciated .
Hello Ritchie, sorry it’s taken me so long to reply, I was hoping someone might step in with personal experience.
It is great when you are presented with an array of options, much better than those who have reached the end with no options, so I bet you gave a sigh of relief. The downside is sometimes the options can go round and round in your mind and sometimes you wish the doctors would just make a choice for you!
I think like any decision it’s good to way up the gains and risks and decide what your priorities are with regard to quality of life and increased chance of survival, and risk of side effects and the possibility of the treatment not working.
I have no latest info on TILS, I did watch last year’s channel 4 documentary, a summer to save my life which might still be on catch up, from memory it had someone on TILS although heartbreakingly it did not work, but as you know we do not all react the same. With regard to TILS I know they do it in Manchester but I had thought it wasn’t available on the NHS yet as it is a very personalised and expensive, I do remember a paramedic Kath Osmond doing lots of fund raising and travelling from Bristol area to Manchester to have TILS she did a VLOG of her journey. There must be people it has worked for but unfortunately I don’t know one as an example.
There is a clinical trial that has TILS I believe in London and Cambridge, (Ive given a link for it before but will find it again if you need it) and as with all clinical trials they might involve more hospital appointments which can be good and reassuring or play havoc with wanting to continue to work, which might not be a concern for you as you might be prioritising best chances of survival, but might need to look if you are guaranteed the new treatment. My post about the melanoma patient conference has a link to info about choosing wether to go on a trial and feed back of stats from ipi nivo trials.
I also found this clinic trial in Manchester that they might have been talking to you about ?
I understand you have had 3 out of 4 of the Ipi, and it’s Ipi that carries the greater chance of side effects so being on either Nivo or Pembro will not be as bad but as you say still carries some risks. I suppose I would want to know which risk is greater TILS or Pembro, or the trial they are thinking about.
I hope you have a long chat with your hospital team and come up with the best option for you. It will be interesting to have feed back from you on how things go for you.
Hi Richie.....so sorry about the scan results, I’m sure you were really disappointed they confirmed the previous CT scan.
As Kath said, at least you have some options, I’m not familiar with TILS therapy, but now do some research on it.
Good to hear your positivity coming through and your keeping as active and normal as possible I am convinced that makes a huge difference and it’s deffinately helped my.
Let us all know which path you decide and we are all here to help, listen and encourage mate. Sorry I have no real practice advise, but my thoughts are with you
All the best
Hi Ritchie R, Jules Somerset, BigT59 and KTatHome
I was wondering how everybody on this thread is doing as its been a while since we've heard from some of you.
I'm hoping everything's still going well with your treatment.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
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Hey Latchbrook, how lovely of you to catch up with us all. V quick recap. Me: ipi/nivo Nov-Jan 18 3 infusions only as huge toxicity. Thyroid followed by two Liver flare ups needing hospital treatment. The second being far worse than the third. ALT at 1001 . The slow reduction of Pred started again and this time the Liver behaved! July PET still showed Immun had knocked out left tumour in node in rt breast and tumour in tissue of rt breast had started growing. So we started reducing the steroids as they wanted to knock on with the surgery to remove it. Weaned off Pred and Micophenolate days before op and had this on 13th August. One night stay. No pain, perfect!! easiest part of the whole thing! Had been really suffering a few weeks leading up to the op with muscle aches and joint pain, horrendous fatigue, no appetite, nausea. Awful, felt like a 90 yr old woman. Went to see Oncologist post op, wound good, I am NED but I was in so much pain! The lightbulb went off and he tested me for Cortisol to see whether I was producing my own and guess what!!! I wasn't! My Pituitary gland has now failed!! Back on Hydrocortizone tablets and within 24 of starting the aches had gone, I couldnt sleep, I was starving and wanted to eat again. Within 24 hrs, unbelievable! I was on top of the world! I can walk the dog at length, stay awake for a day and think about food, but......the whoopie cushion face has already started to come back having literally got back to normal about 10 days ago!!! lol double edged sword this one! Back to hospital tomorrow to see Endochrenologist !
Sorry that wasnt as quick as I thought! So whilst on steriods, I am great, Stage 4 NED!! How is everyone else???? Traceyxx
Hi BigT59/Tracey and I'm really pleased to hear that you're NED!!!!!!
Excellent news too that you're feeling so well now after feeling decidedly elderly, by the sound of your description. No disrespect to any 90 year old women on here though!
Hope everything goes well tomorrow. I'll be thinking of you.
Hi Everyione , its been a while since i posted due to a dramatic few months .
been back and forward to the hospital to discuss all the options on the table. Clinical trial if you qualify ? back on immunotherapy ( single drug ) or TIILS
After asking alll the questions ( you’ve got to be blunt ) it would appear that the most effective treatment is the TILS therapy with very high success rates , Problem being this is not available on NHS etc. This has been running for over 5 years ibut the only way to get it is by self funding? According to the research this may be the way forward , Its less cost than immunotherapy but not NICE approved .
This rollercoaster we are all on seems to gather speed at times doesnt it Ritchie!
Sorry to sound daft but can you tell me what TILS therapy is please.
Please update on here.
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