Forum Replies Created
I just want to say that when my colitis hits, which it has both times I had ippy in the treatment, there is no amount of dietary or other control to stop or mitigate the diarreah. The first time was 6 weeks in hospital, the second was reduced doseage and we were able to avoid a hospital situation with outpatient fluids. Still, one and done for the ippi. Just a data point, hope yours in more manageable. Sometimes it is just Not.
- September 20, 2021 at 4:12 pm
Now on Optivo Maintenence. I am also NRAS+ and am hoping to be part of that profile mentioned in the research by Bubbles.
Congratulations on your very aggressive cancer and horrible side effects, looks like things might be looking up!
I feel the pain of those altered expectations. I know my “melanoma lay-training” taught me to hope for gamma knife and correspondingly despair for WBR. (This a joke, BTW.) I was “too many mets” from day one, so Gamma knife was not the primary tool. WBR was. It is still under consideration for any future round that is appropriate.
- August 31, 2021 at 5:40 pm
Had it in March and still marching. “”stable”. I think it has taken several thousand off my nightly Jeopardy score. It’s noticeable to me my recall is not as it once was, but there’s also cancer, aging and the cannabis to consider….
No pain or noticeable disorientation during treatment or afterwards. It’s scary to be on watch for anything neurological when you feel like crap, so I just didn’t do that that much. I felt I’d just wait until clear signs of problem emerged and that hasn’t happened yet. KNOCK KNOCK.
It’s a great all purpose excuse afterwards – a little dishonest to use it too much though. Just have a spot where things like keys go, and only go, always. My hair came back an awesome silver tone. Much fuller looking. Bonus.
- August 28, 2021 at 2:59 pm
How Many Times a Day Do Hobbits Eat?
Breakfast – 7 a.m.
Second Breakfast – 9 a.m.
Elevenses – 11 a.m.
Luncheon – 1 p.m.
Afternoon Tea – 3 p.m.
Dinner – 6 p.m.
Supper – 9 p.m.Never miss Second Breakfast. Seriously, I have to work at eating. Will live on any food that satisfies like McD’s, even though that is not my ususal go to.
I did the combo, getting 2 rounds w/ippi before having to stop due to colitis. It stopped my progression, but not for long. My MD speculated the amount of infliximab on my colitis recovery may have limited the efficacy of treatment.
- August 20, 2021 at 10:13 am
I got the combo again almost a year later, with reduced ippi. Only got one round in. Again good results – not NED like the first time, but stable.
Now on Optivo maintainence and stable for 4 months. I have brain mets and am braf-wild so hoping like you for some immuno impact in the brain. Optivo causes me no problems.
Best of luck this is increasingly a well-trod path, methinks.
- July 24, 2021 at 4:13 pm
I’m sorry I haven’t reviewed your history if the answer is there, but is there some way you know that the Ipi has had a positive effect?
I’ve had bad ipi colitis both on second combo dose (which then made me NED) and then on a re-challenge dose of 1/3 after progressing again. And again became stable. Thought for sure Ipi was working, “too bad it kills me”. Now I’m on optivo maintainence and guess what; apparently I’m not missing the Ipi as scans show my “too many to count” subcutaneous tumors continue to disipate from the “explosion” last December.
Possibly a 180 degree reversal in my understanding of effectiveness of single agent Optivo. And correspondingly the necessity of Ipi. I did progress after an adjuvent S3 CT trial with Optivo, but only 18 months after treatment – so….maybe it did work, for a while. I don’t really have an answer. My Ipi vitiligo seems very real (hence it had to be the hero), but at this point, both are in my system and whatever synergies are there may already be available.
Side effects in a clinical trial always scared me. You can’t control something and boom, you’re out. And noticing you are weighing a non-Ipi CT vs. an Ipi CT, I wondered about this question in your case.
Best of luck with your choice and treatment.
I 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.
On treatment after first metastases, i discontinued the combo after 2 doses of the combo due to colitis. i had those 3 tumors disappear (NED) . After massive outbreak 6 months later, including both adrenals, I was given modified combo with yervoy reduction. again this triggered much lighter colitis – manageable but also treatment stopping. However, the result so far has included reduction of adrenal tumor size. i’m now on optivo maintainence.
- June 18, 2021 at 9:10 pm
obviously we are all different in situtions related to our immuno-aversity, my experience is a return to the “safe-side” immuno of optivo. I don’t have Braf+ options. That probably would have happened instead if it was an option – given my tumor load being significant when we crossed that bridge. Your tumor load profile will vary.
hopefully you are not dealing with this on review. FWIW, I have not experienced a unusual fatigue or side effects from having my adrenals full of mel. some lowered libido. If you don’t know the why’s/wherefores of the liver and combo relationship, it might be good to know.
Leaving the science to my betters, I offer this observation. PA’s can be great in providing needed candor that the Onc may withhold. But there is a reason for being highly circumspect in estimating remaining life.
- May 31, 2021 at 9:16 am
My PA once made an offhand life expectancy comment. I could tell she wanted to take it back immediately and it has already been proven wrong – although it was not necessarily unrealistic when made. Ironically, I think she was trying to be helpful as she knows the doc is not overly forthcoming.
Hoping the same for you. I’d let go of that remark, it’s not a qualified medical opinion. The step below “medical opinion” is what? Shooting the shit?
I always wondered when someone will say “put your affairs in order”. I’m not sure that really happens much, nor should it. We know where we stand as well as we need to.
Just one person’s experience. Braf wild/NRAS positive. My MD mentioned an NRAS related trial he is involved in (U Miami/Sylvester.)
- May 30, 2021 at 2:50 pm
I would be possibly heading for it myself, but I am still having some response to immuno. (Not clear which side of combo or both or if it will continue).
I’m bucking for a TIL CT if progression returns as our other Tim has written of recently.
Thank you TimCT for sharing this very timely post.
- May 8, 2021 at 8:43 pm
And damn, Johnjk04, I thought I was the only person who carried those kind of dark thoughts around, good to know you!
I have a great top guy I trust, but he doesn’t communicate well (old school) so his very defendable conservative advice can make me queasy with “Fear of missing out”. This thread shows why. It’s a small eligibility window to make at a bad time in the process.
Think I may ask who my “CT research nurse” on the team is.
So do please update. Your experience has value to lots of us, good luck on your choices and options.
“…melanoma patients deserve a place that is free from folks with an underlying desire to sell their products – no matter how worthy (or not) they may be.”
- April 23, 2021 at 12:37 pm
I’m surprised there is not more concern from the org itself about maintaining perceptions of integrity.
Every junk or commercial post dilutes the overall quality that some have labored for years to build up on this board.
As one who benefits from quality participation, I find commercial come-on’s diminishing to the board and completely unacceptable.
I saw the headline and had to read this. I won’t rehash my own story, but I’m with you on the unexpected ups and downs. This seemed relatively easy to navigate in 2017 when starting the journey at 3B. It seems things have gotten much more complicated all around both with new options (yea!) and being S4 and exhausting (or not) the go-to treatments (boo!). And there just aren’t enough answers about progression after response. Or response after progression after response.
- April 17, 2021 at 5:48 pm
I like your attitude and try to adopt it. It’s like, at a certain point, you have to accept the individualized responses to these drugs ultimately can mean you can’t know where your next options are going to be until you get there.
Which is hard for those of us who are always thinking too far ahead. Good luck with the Targeted Therapy!
My first immuno tx was in a clinical trial in 2017 where I got optivo only (unblinded now)
- April 10, 2021 at 1:34 pm
Progressed in 2020. This seems to suggest I am an optivo non-responder. So I then got the combo.
After my second combo tx, I went way south with colitis. 6 weeks in hospital total, and maybe 60 days of “adult diaper” level incontinence. 2+ months of nothing by diareah every 2-4 hours.
3d or 4th dose of infliximab + massive steriods (80mg) finally got things under control. My doc still refers to this as “almost killng me”. I have no doubt.
I got no other treatment after the second combo dose. (at this point)
It was enough though and I responded to the 2 combo treatments and was NED, but then had a big body wide outbreak 5 months later.
I returned to the combo and again almost instantly had colitis. The dosage was reduced; I’m not sure how much, wanna say 3mg from 10.
Also the second time we had a quicker response with infliximab and I did not decline for weeks, I had one out-patient re-hydration along with the infliximab, and I was better (solid) within 10 days.
I was given the next 2 rounds of optivo only. I am told I cannot conclude the Optivo is of no value. I am pending the forth treatment.
My scans following the second ippi application are once again showing retreat of mets and no new growth. My vitiligo expanded. With Wide brain radiation, my brain mets have also stopped growing. Again possible ippi at work as well.
I am a total believer in yervoy in my case and am very invested in this issue of side effects vs. effectiveness.
My belief is that I am very fortunate to have an experienced onc who is in a place of knowledge where he was willing to go back to the poisonous well of ippi. It is a complete ethical morass to ask an MD to “give me poison and save me, but don’t let it kill me.”
Looking forward, I have daydreamed that now that if we have the “low dose ippi and an infliximab chaser” figured out, this could be a pathway to something durational.
Side question; I understand the body “learns” from the immuno – so is there a limit or point of exhaustion of this treatment? Is that still coming into our understanding as we wind out into decade 2 of the revolution?
In any event, if my next scan shows progression again, I will be lobbying for the 4th treatment to include the ippi. This has been a somewhat subterranean discussion with the MD. It is clear from product specs (and, you may find behind that insurance restrictions) that I am in unknown territory as far as continuing to get this.
But there may be an argument as well that a certain sub-population gets great results but with side effects that are so dire that the SOP is just to abandon the therapy. I’ve seen Bubbles address this conflict parenthetically in a years ago post. Conservative medicine will undoubtedly be a deadly problem for some who might otherwise have hope.
My original colitis was definitely Hell and life threatening. My second go around was something any of us would happily endure even once every 4 months if it delivered the melanoma killing goods.
Stay tuned, as I certainly will be to you and all of us in this boat. You may note inherent in my experience: I drew the “lucky arm” of optivo only in the CT when it wasn’t otherwise available.
Higher efficacy. Fewer side effects. Didn’t work.
Finally got to the less effective and high side effect Yervoy and that’s what seems to work. I don’t think I am alone with this profile. There is also a quite a bit of unknown info as well logical leaping around here, I will acknowledge.
I was a stage 3B adjuvant optivo recipient in a clinical trial in 2017. Also then progressed; spleen, stomach, neck in 1/20.
- March 10, 2021 at 8:32 pm
I went to the combo – didn’t know braf status at the time. Had a low tumor load and personally favored immunotherpy follow up. (getting my braf status turned out to be a continuing nightmare, but another story)
I seem to respond to yervoy. I got a fully clear scan. But then a “maybe spleen again”, followed by “no spleen, 100’s of subcutaneous + brain mets’. So I progressed after response, but then that fairly massive progression has showed some reversal after just one return to combo dose. I have the additional complication of serious side effects from yervoy, but it seems to work. Even my vitiligo seems to spread.
I have since tested as braf neg and nras pos which has a fairly poor comparative prognosis. The nature of my experience has even raised question as to whether the adjuvant optivo treatment wasn’t perhaps of some effect. It seems I’m alive at 4 years post diagnosis which is about 70% down the old nras mutation mortality curve that bottoms around 80%. Still feels like a coin toss – like we were the first lucky generation – but this uncertainty is what you get. I love yervoy and the colitis it induces, like the smell of napalm on melanoma in the morning.
I have experienced Yervoy activated colitis 2x. Stage 4 guy.
- February 15, 2021 at 7:47 pm
The first time followed standard combo treatment. We got there a bit late (like 4-5 days) in response after diareah onset (unclear if this really hurt), and I had 5 weeks of hospital over 4 months of recovery which was largely due finally to a 3rd and 4th round of infliximab which, I guess can only be given every 3 weeks. It was pretty hellish, lost 40 lbs in 40 days. Complete loss of vitality and muscle mass. Steroids in the 80s. Which maka me crazee.
Parenthetically, I also think the regional hospital I was first at did not have the oncology and conventional internal medicine background to address this. The treatment I got later in a University (Miami) hospital (connected with my oncologist too) was simply better focused on the interplay of the issues. So I count that as a “lesson”.
Yervoy apparently worked, and when I had a return my choice was chemo or reduced dose combo return, which I chose.
The dosage was reduced, we were ready for the colitis and avoided hospitalization with outpatient infliximab and 40 mg Pred., solving the colitis in 2-3 weeks.
I recently joked that I was ready for my next “shot of Yervoy, with an infliximab chaser” and got a laugh from my doctor, a first. That’s problematic of course, but this is somewhat a tale of hope of colitis getting better. I can tell you at it’s worst my feelings of “who would want to live like this very long anyway” were higher than they are now.
I found it not so hard to forget the 70 some days of every 2-4 hour bathroom trips on the clock. But I am still apologizing for my steroid rage outbursts of the time, LOL