Forum Replies Created
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- March 24, 2022 at 9:38 am
Thank you for sharing. So much potential for FOMO and second guessing along the way. Importance of family is the meaning of this after all. -
- February 23, 2022 at 8:36 am
One year ago, I was awash in tumors in my body and brain. Tx w/Nivo has caused that to fade with no new growth as to body.My brain received wide area radiation in March and SRS in October. My recent scan of the October response shows one mm growth in one tumor and 4mm in another that went from 16-20. The larger growth is also described as a “possible flair”, as 2 doctors disagree about the amount of hyperfusion in the area.
I’m on wait and see for a couple months. Still on monthly Nivo. We have spoken about LAG trials, but as of now, it is hard to say that I am progressing and therefore have exhausted current treatment.
Side comment; I’ve been stable on nivo for almost a year. But the moment “possible” growth in the brain occurred, the insurance doctor was jonny on the spot to cancel treatment due to progression (which was a minority opinion among oncologists). Fortunately my doctor has some gravitas in these matters. Be watchful.
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- February 4, 2022 at 12:13 pm
I think 4 months is normal. Another 1.5 months, from my understanding, is not usually going to be meaningful as a potential delay to return to treatment.Still, you don’t want these things to happen.
Most important is to ensure against another set-back. US Insurance authorization can expire unnoticed by the provider, until day of service and it’s expired, for example. Be loud with the offices setting this up/confirming.
(thought)
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- October 25, 2021 at 9:40 pm
It has been quiet. So a good reminder this board benefits from all levels and perspectives of questions and interests.Never be shy!
(also between scans at the moment)
So many emojis to choose from!
Emojis are exciting!
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- September 20, 2021 at 4:12 pm
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.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!
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- August 31, 2021 at 5:40 pm
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.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.
Good luck.
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- 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. -
- August 20, 2021 at 10:13 am
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.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.
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- July 24, 2021 at 4:13 pm
Hi Amanda,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.
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- June 25, 2021 at 9:56 am
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.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.
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- June 18, 2021 at 9:10 pm
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.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.
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- May 31, 2021 at 9:16 am
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.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.
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- May 30, 2021 at 2:50 pm
Just one person’s experience. Braf wild/NRAS positive. My MD mentioned an NRAS related trial he is involved in (U Miami/Sylvester.)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.
Good luck.
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- May 8, 2021 at 8:43 pm
Thank you TimCT for sharing this very timely post.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.
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- April 23, 2021 at 12:37 pm
“…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.”Amen.
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.
TY.
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