I’ve progressed on adjuvant pembro, further surgery on my left axilla in March 2021 and now it’s returned to the same spot. Oncologist is recommending standard Ipi/Nivo combo (dosing regime 3 mgs per kg of Ipi)
- June 25, 2021 at 8:14 am
I’m up to speed on the data and realise that toxicity is both wild and random. I’m normally a stats type of person and am wary of anecdotal evidence, but have any of you kind folks got any tips – lifestyle or complimentary (not alternative) that might help me?
ThreefittyParticipantI think some are destined to have serious adverse response to Ipi. Preparation for that possibility could include realizing there is you little you can do to prepare for it when it is going to be rough. Except being ready in weeks following treatment to be incapacitated (from e.g. colitis). My collapse occurred 3 days after treatment 2 and the hospital would be less than a week away. Take all negative signs seriously and report immediately.
- June 25, 2021 at 9:56 am
This is obscure but if you do go to the hospital, make sure you go where your onc is practicing, even if it is less convenient. General Hospital internists are not alawys familiar with immunotherepy complication issues. They need to be working with the Onc and ideally they are already on the same team like a University.
Hopefully you won’t need that type of advice.
- June 25, 2021 at 2:12 pm
I just finished my second infusion of ipi/nivo. The first one was easy with minimal side effects. The second one is totally different with flu like symptoms and joint pain. I have a friend who is 1 1/2 years out and no symptoms at all and also know someone who only completed one dose due to severe liver toxicity. As you know and have probably read side effects affect everyone differently. Ed posted a very informative video regarding side effects and how they are treated. I’ll try to find it and send your way. For me personally I try to get eat healthy, walk daily, get enough sleep, medication etc etc. All of the usual stuff. I have found it helpful to drink 2 liters of water throughout the day post infusion to flush the meds (unless have fluid restriction). My best advice is to listen to your body and keep in close contact with your oncologist and let him/her know of any symptoms even if mild.
By the way, I am also going to try hypnotherapy for anxiety to try to keep my mind from going to negative places. Who knows if it’ll work or not but worth a try. If anything the ambiance of the office is very relaxing so maybe ill get a peaceful nap out of it, who knows lol
- June 25, 2021 at 2:16 pm
MelMelParticipantI am all for statistics however they only carry you so far and while they are the key when choosing treatment, they are not very helpful when you run into problems and need to deal with side effects and actually live through them. I had to deal with both and to my shock no one ever talks about how you feel during the time when you are off immunotherapy and dealing with serious issues. Dealing with steroids is an entire different ball game and totally different can of worms and most people have very little experience with these. No one wants to tell you that if that should happen to you, that you will be for months on steroids and it will take months to taper off. The list of steroid side effects is as extensive and varied as that for Opdivo and Yervoy. I had to find all this out on my own and on my own skin and statistics did not help me when it came to dealing with serious side effects of drug induced liver injury after my second combo infusion. I felt relatively good until the steroid side effects started to kick in. Then, each few days I was dealing with a different crisis.
- June 25, 2021 at 4:25 pm
One thing to keep in mind is that everything in life is relative. I was stage IV and purely based on statistics, I chose the combo since it had the best outcome but highest chance of severe side effects. If I had to do it over again, I would chose the same. It just sucks that I fell into that small percentage group of severe liver toxicity when I was doing so well on the combo treatment. Now, instead of falling into the NED group, I am in the 84% group of everything in between.
There is actually very little you can do except believe in the treatment you have chosen and pray for the best outcome.
Hoping your combo treatment is successful and you join the complete responders group.
Tim – if it’s returned to the same spot but has not spread, so its local/regional, has your oncologist thought of adding TVEC to pembro? Ipi/nivo of course makes sense but in my case I had local disease that kept recurring after surgeries, so I was put on pembro to cure it, slow progression, was going to do third surgery but instead was given the chance to add TVEC to pembro, which seems to have worked (my last scans last Friday – scanxiety week). I am very grateful for the second opinion doctor who highlighted this option (my doctor knew about it but had decided against) and the doctors who made the effort with my insurance company and creating a sterile room to make this possible.
- June 26, 2021 at 7:39 pm
I took adjuvant ipi and had to stop because of side effects – and then I progressed. Then tried pembro and finally pembro +TVEC. Disease always local thankfully, maybe the pembro kept it in check?
Just an idea and wonder what your oncologist thinks?
Hi Mark- yep, we discussed TVEC (it was uppermost in my mind). His view is that the tumors are too big, but it will be fleshed out at the MDT meeting this coming Thursday. My surgeon – who I rate highly – will also have his say in this forum.
- June 27, 2021 at 12:56 am
I am unlucky enough to have the NRAS (Q61) mutation, so the initial growth has been rapid. C’est la vie as the French are want to say
- June 27, 2021 at 11:12 am
I did 2 rounds of ipi/nivo earlier this year…my oncologist moved me to targeted therapy because he didn’t feel we were getting the results he had hoped for. I had tummy aches and fatigue, but thankfully nothing worse like so many others, but again only 2 treatments and the second one was a low dose because my labs weren’t the greatest and he was concerned I was going downhill. My advice, again like others; get plenty of rest, eat good, and walk/exercise…especially in the early days of your treatment. Also, if you have trouble sleeping there’s no shame in asking for something to aid with that. Rest is important. Best of luck to you!
- June 27, 2021 at 9:40 pm
BTW, I am NRAS too!! (The unsung mutation :-() I didnt think it mattered when first told but now not so sure. However, while on pembro I never experienced rapid growth – it dissolved a tiny tumour, the other grew slowly but I guess doubled in size over one year. Then TVEC came in and helped. I only had one local tumour; if you have few and local then adding TVEC could be a possibility. Again its for your board to consider. My board considered too, then a second opinion came in and so the board or my oncologist said fine, give TVEC a try, they didnt think insurance would approve, then it did, but then my oncologist hospital didnt want to administer so he passed me on to their sister hospital and a new oncologist! That was a low point as I liked my previous oncologist. The next low point was being denied treatment by insurance just before Christmas! But my new oncologist appealed and made the case, thankfully, and he’s my hero!!!
I am fairly sure I have read in the last few months about some experimental work targeting NRAS. Probably Phase I or II trials. Not sure where I read this though.
Good luck Tim!!!
Best wishes Mark
Thanks for this Mark.
- June 28, 2021 at 12:35 am
The NRAS mutation, yet another one of melanoma’s dirty little secrets!
In many ways, I am lucky that I live in England when it comes to healthcare. Of all the things to worry about, treatment options being turned down by an insurance company isn’t one of them! However, like most things in life, it’s far from perfect. That said, I’m lucky to live in Oxford, where the oncology departments are full of very clever people who graduated from Oxford University. Maybe not superstars like Jeff Webber or Jason Luke, but solid professionals nonetheless.
I am being put forward for an NRAS based clinical trial of some description – I don’t have the details yet….
Tim, I am in the UK as well, and my husband is stage 4 (currently NED after Ipi/Nivo, and he failed adjuvant pembrolizumab. He is BRAF negative).
- June 28, 2021 at 4:59 am
I am a bit hesitant to write it but I guess it is better to be aware – in the UK financial considerations are very much part of treatment decision. There is just a finite amount of money that can be invested in each patient. I really don’t want to go into discussion what is better, but obviously when you are sick you want all the possibilities available to you. The reason I am writing it is to say, please do not hesitate to seek second opinion at any stage of your treatment, and always ask if different options are available privately if you can afford it! It is no disrespect to your medical team. It is very appropriate in your situation.
In your shoes I would go to Royal Marsden hospital in London if you wanted to get a second opinion. It has some world famous melanoma specialists.
Now I am not a medical doctor so feel free to absolutely disregard my advice. If I was you however I would question why your team is considering medical trial when in your situation Ipi/Nivo is by now a standard treatment with good chance of working (the trials have shown it works well even after failing adjuvant pembro). It should also be given as soon as possible because it works better with lower tumor burden. Your tumor has an advantage of being accessible and observable so they would be able to check with naked eye what this treatment is doing to it, ie if it is shrinking, and take biopsy easily. So if your doctor is proposing something else in your situation I would ask another doctor to really understand what is what and decide based on that. My tip is just to be quick with all that.
Good luck with whatever you decide.
Thanks for this- again very helpful. perhaps I wasn’t clear, but the clinical trial option was mentioned in the event the Ipi/Nivo combo fails.
- June 28, 2021 at 5:25 am
So far as seeking a second opinion is concerned, the Churchill hospital in Oxford has a fine reputation and I have nothing but praise for the treatment I have received. That said, I am well aware that, further down the line, resource issues may come into play.
Sounds good then!
- June 28, 2021 at 5:56 am
I just often came across expats misunderstanding the UK medical system and my best explanation is that in the UK your trust=your insurance company (and you can have a private insurance on top of that). A useful thing to know is that with cancer and other major diseases you can sometimes choose to transfer to one of the specialist hospitals (e.g. Marsden) and hence change the trust. This sometimes offers additional treatment options. Not suggesting you should transfer just be aware it is a possibility for the future.
Re: second opinion – even when you believe your team is the best, don’t hesitate to ask for other opinions when the situation is not straightforward- it is better to have an additional input to ponder, for them as well as for you.
Nerve RejuvParticipantIt seems like as we get older the first thing to go out on us is our back. Although anyone at any age can have back related issues, the older you get the worse it feels. Don’t let Nerve Rejuv Reviews back pain bother you anymore. Take the advice given below to help yourself feel good again.
- June 28, 2021 at 9:27 am
Be careful with how you stand to prevent back problems. This is especially true if you need to stand for a long time. Try putting one of your feet up on a low cabinet shelf or stool if you can. This helps reduce back strain. If you are unable to keep a foot elevated, make sure you shift your weight as often as you can.
Choose your chiropractor wisely. Most chiropractors are honest, but some are not. In fact, there have been many cases of a chiropractor causing more harm than good. Do your research so you know what you are getting into.
sing123ParticipantHi Tim, I think it is always good advice to be in relatively good shape if you can – physically, mentally, emotionally. Living in the present and knowing that any (and some don’t have any!) discomfort/pain will typically pass of side effects during/after treatment has helped me loads. And feeling grateful for the medicine I am given (this took me a long time, I used to feel resistant to having to be on immunotherapy, and now I realize what an amazing time we are in to have this available – thankful to all the rock star docs and researchers and incredibly brave patients who jumped in before us).
- June 28, 2021 at 11:14 am
- June 28, 2021 at 9:00 pm
Now the other thing we have in common is that we are close to Oxford too – although I graduated from there 30 plus years ago, but it’s a special place for me.
I do agree with MelWave though – I am British but lucky to be in the States and have reasonably good insurance (well they covered the TVEC plus pembro in the end). In the UK i get the sense that if the treatment does not work (say bad liver numbers) then they take you off quickly and then may not restart you. In the US i was taken off, put on prednisone, then put back on again. They are always considering options. And in the end one seems to have worked for me.
My sense is that it is important to advocate if treatment is denied; it seems they are considering trials which is great (and being at Oxford I think they would be open to discussion and new ideas), and ipi/nivo makes sense obviously, but I like the TVEC based on my personal bias and experience but for low tumour burden cases. I do think MelWave is right that you should consider Royal Marsden and since it;s close thats an easy option for you compared to one of our members who was from Scotland.
Why I agonize over this is that one day I really would love to return to the UK to live, but I dont want to lose my US treatment. I do think in the UK we need to advocate for more spending on the NHS, there is too much rationing out. I hope to pop over in the next couple of weeks for a break :-)
best wishes Mark
- June 29, 2021 at 2:56 am
TVEC is most certainly on their menu, but the problem is that -possibly due to the dreaded NRAS mutation- the tumors in my axilla grow too quickly for that to be a viable option.
I find I’m quite defensive about my team at the Churchill. They worked incredibly quickly following melanoma diagnosis in April 2020 when lockdown was crippling the health provision. I presented with a huge lump in my axilla and lymphoma was the prime suspect. It turned out to be MUP and their prompt and yet calm actions saved my life.
To seek a second opinion at this stage seems like a betrayal. Ipi/Nivo it is. I will ask about radiation treatment as a short term measure.
JudiAUParticipantMy doctor is a proponent of throwing everything at Melanoma and seems to allow things that others don’t. For instance, he starts combo first, than allowed a very short break for surgical brain met removal, short course of radiation while in combo, and quite a long time of steroids while also doing immunotherapy . Many doctors won’t allow the drugs with steroids but it really worked for me. By my first scans the cancer sports where gone, my brain has been stable since surgery, will likely end immunotherapy in September. He says that none! Of “his” patients with a similar case history have had a reoccurrence.
- June 29, 2021 at 12:25 pm
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