Wilma is a skin cancer specialist nurse, here to answer your questions about different...
yes i agree we are all on the coaster .
TILS therapy was developed in the states many years ago but has been running for about 5 years in the UK. It is a form of personalised immunoitherapy medicine with very good success rates . A tumour is taken from the patient by surgery then harvested over 2/3 weeks . Your immune system is then stripped back over a week and then the TILS cells with an agent called ILK2 is put back into the patient.
It’s a quick treatment which takes about 8 weeks , yes it does have risks like all treatments and during the second part a 2-3 week stay is required .
Results from what i can see have been very good. It is not given out easily and this is not NICE approved and not available on the NHS .
A similar type of treatment was recently approved for in children with Leukemia.
I can see some further trials taking place in the UK soon on this .
From what i can gather its a very good option but funding is the usual issue even although is costs less than other treatments ????
any further questions please ask.
My pituitary failed on immunotherapy. I remember how it felt before they worked out what was happening - I have never felt so bad. It is now three years later and I am coping OK. If you want to know more about what's it like, just ask.
All the best
Hi everyone....haven’t posted for a while, a bit like Richie, trying to come to terms with my options. So the ippi / Novo ultimately failed, but tbh after just 2 sessions I wasn’t that surprised. After seeing your blog Richie I have been investigation TILL therapy, I’m being told the side effects are as dangerous if not more so Thant the treatment we both had such a bed reaction to, and that fact predeposses the fact we will probably react badly to it.....I’d be interested to hear what you’ve been told. I have an appointment with my Oncologist on Friday, who is suggesting the BRAF and other inhibitors as the way forward..my research tells me this will give me about 12 months before the cancer starts growing again....so might consider the TILL therapy then, however if the side effects outway the the chances of success.....not sure, but have a few months to consider this LOL....
anyway. Just a quick post to keep you all up to date.....also I am going on holiday once a month for the next 12 months.....Live life whislt you can xxxxx
take care everyone xxx
Hi Jules Somerset
I'm really sorry to hear that the ippi/Novo combination failed but it's good that your oncologist still has some tricks up his sleeve.
Hope you have a great time on your monthly holidays!
"Never regret a day in your life, good days give you happiness, bad days give you experience"
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Hi Jules Somerset ,
Sorry that these side effects have become an issue. I am very impressed by your attitude though. Where are you going first?
Don't wait for your ship to come in, swim out and find it!
the Ipi/Nivo did work for me and the option to go onto a single drug is still an option however I’m looking for something which will work long term rather than short term.
Reference the TILS therapy I have a very detailed leaflet on this . With all treatments there are risks. On TILS you have to go in as an inpatient for approx 2 weeks to ensure everything is monitored .
The TILS option I’ve been told is the best option with 50% chance of success which is high , a risk worth talking in my view The risks are not any higher than the double drug immontherapies . Other benefit is this is a short, sharp treatment rather than a long drawn out treatment .
It would appear this type of therapy is the way forward and could become the main stay for our type of illness , similar treatment just been licensed for children with leukaemia. Having looked at all the research most likely i will go for the TILS.
tell me more yes! My symptoms were awful muscle and joint pain. So weak and I could not stay awake. A nap was 31/2 hrs of a job. I was cold to my bones and no appetite. The thought of food made me gag! It’s cortisol I am lacking after 7 months on high dose pred. Testing now but I had you in mind when I saw the Endohrinologist last week. Already on levothyroxine from immuno and dr said he is seeing more and more of these cases and it is likely to be permanent. Ipi Nivo worked 50% for me. Not complaining. If I have to stay on Hydrocortisone to feel this well I will. I have energy. Appetite and can stay awake for a day!!
Is this similar to you? Tracey
Hi we have just come back from 2 weeks in France with the dog......next I was thinking some late Mediterranean sunshine in October....Italy or prehaps Greece.
Hi Richie....thanks for the post.....I wasn’t aware the success rate of TILS was so high.....I have a private Onocologist appointment tomorrow and will deffinately discuss this with them.
keep us all posted on how your getting on
take care, Jules
Yes, I felt exactly like that before they realised my anterior pituitary gland had given up. I felt so good after that first tablet of prednisolone!
I had not been on high-dose steroids, so there was no chance that the issues was with my adrenal glands. My endocrinologist told me that some people are lucky and there is some recovery of function but the damage to my anterior pituitary gland is so bad that they can see it on an MRI.
I had no problem getting my levothyroxine dose right but, for me, the replacement cortisol dose has been more tricky.
I decided to stay on prednisolone rather than change to hydrocortisone. My first endocrinologist was convinced that 5 mg prednisolone per day was ideal and that 7.5 mg prednisolone a day was the absolute maximum. She was worried about the long-term effects of taking too much steroid. I was worried about feeling crap, being able to function and holding down my job!
I have another endocrinologist now (same team) and she is OK with me taking 8 mg prednisolone per day. I have to 'double dose' if I get an infection (this is official advice). I also 'updose' (take a bit extra) if I feel the symptoms of 'low cortisol' (my endocrinologist trusts me not to take too much).
I also have an injection kit in case I go into 'crisis'. 'Crisis' is when your body goes into shock and demands cortisol you cannot produce. My endocrinologist says that most of her patients never experience a crisis. Also, if you go into hospital (or to a dentist) for a procedure you need to tell them that you cannot make cortisol so they can compensate.
I also have a medical alert bracelet.
There is lots of advice online. I am in a facebook group and because of other people's experience I decided to try splitting my prednisolone dose to imitate how a normal body makes cortisol across 24 hours. It's called circadian dosing and it has helped me.
So, overall, the trick is to take as little replacement cortisol (prednisolone or hydrocorticone) as possible without feeling rubbish. For me, if I take too much I want to eat loads and if I take too little I am moody and get muscle pains. If I am definitely too low I go so pale I look grey.
It's not perfect but it is much better than being dead, which is what I would be by now if I had not had Ipi.
neither was I until i sat with the oncologist twice and went through the results ,
i remember watching a speech from the Melanoma conference from a patient who said base decisions on results .
the only problem with TiLS is getting the funding, cant get on NHS, some insurers will cover this others not if you gave insurance . Whilst this is been going 6 years in the UK additional clinics are looking at this , This treatment is also available in Holland ,Israel etc as well as the USA . Much more cost effective in Europe.
Any more questions please ask
HI - I am correct in thinking you had only 3 in the series of 4 Ipi/Nivo infusions? My husband has just had his stopped due to concerns about side-effects. You are NED?
Stage iii melanoma, WLE, SNB, Axilla node removal.
NOw stage iv - June 2018 Mets in right lung
Hi there. Yes. I had three of the four. First was 29th Nov last year. Last 29th Jan this year. I had/have developed thyroid problems on levothyroxine for this. Then my ALT liver levels soared and I had two weeks in Feb in hospital then another two weeks in April when it flared again. Treatment was IV prednisolone and microfenalate and I was on high dose steroids from FEB-AUG. Weaned off for surgery 13th Aug. Op fine. Ipi/NIVO shrunk and destroyed a tumour in node in left breast but didn’t touch tumour in tissue if rt breast hence op. Once off steroids it became apparent my pituitary / adrenals were not working and I am currently back on steroids but low dose and will be forever. Investigations continue to determine what has stopped but I suspect it’s Pituitary. No Cortisol being produced. I feel And look pretty normal and yes I am NED following op. Check up last week and I showed Dr “something” that had developed on my left breast which was removed then and there. I’ll get biopsy result on 18th with latest PET results too. Been a bit of a year. Ipi/Nivo. Was 50% successful for me at stage 4 but I am here and receiving fantastic treatment.
please let me know how your husband is tolerating the treatment. Tracey
do you think had you had the 4th treatment, the outcome would have been any difference?
Thanks so much for your response xxx
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