Melanoma Research Foundation | Threefitty | Activity https://forum.melanoma.org/user/threefitty/activity/ Activity feed for Threefitty. Thu, 23 Apr 2026 02:24:18 -0400 https://buddypress.org/?v= en-US 30 hourly 2 d85d55af6693f07a1e414e92b61cd282 Threefitty replied to the topic Please allow me to share my dear father's Melanoma journey :*( in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/please-allow-me-to-share-my-dear-fathers-melanoma-journey/#post-276514 Thu, 24 Mar 2022 13:38:50 -0400 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.

]]> f32f58626643b74ad26dceff11bf23c4 Threefitty replied to the topic Update and Question in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-and-question-4/#post-276389 Wed, 23 Feb 2022 13:36:48 -0500 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…Read more

]]> 9341c2031939b2b64e2e375b33bc3046 Threefitty replied to the topic Imaging question ? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/imaging-question/#post-276283 Fri, 04 Feb 2022 17:13:52 -0500 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…Read more

]]> a15c91989995eab7ea4d85809bc49c70 Threefitty replied to the topic Forum activity has virtually ceased and MRF does not seem to care in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/forum-activity-has-virtually-ceased-and-mrf-does-not-seem-to-care/#post-275867 Tue, 26 Oct 2021 01:40:09 -0400 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!

]]> 3ee032dd08a23df7b554266382461073 Threefitty replied to the topic Ipi Nivo colitis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-colitis/#post-275716 Mon, 20 Sep 2021 20:12:57 -0400 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…Read more

]]> 3cdec044767d06788ec3c384e4f20626 Threefitty replied to the topic Whole Brain Radiation Assistance in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/whole-brain-radiation-assistance/#post-275579 Tue, 31 Aug 2021 21:40:44 -0400 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…Read more

]]> e0635a4a128d2b241a3118a2e371bcda Threefitty replied to the topic Any suggestions for weight loss and fatigue in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/any-suggestions-for-weight-loss-and-fatigue/#post-275562 Sat, 28 Aug 2021 18:59:23 -0400 <b>How Many Times a Day Do Hobbits Eat?</b>

<ul class=”i8Z77e”>
<li class=”TrT0Xe”>Breakfast – 7 a.m.
<li class=”TrT0Xe”>Second Breakfast – 9 a.m.
<li class=”TrT0Xe”>Elevenses – 11 a.m.
<li class=”TrT0Xe”>Luncheon – 1 p.m.
<li class=”TrT0Xe”>Afternoon Tea – 3 p.m.
<li class=”TrT0Xe”>Dinner – 6 p.m.
<li class=”TrT0Xe”>Supper – 9…Read more

]]> 90357dde29e0a25188be84a29861f8c3 Threefitty replied to the topic Has anyone done the ipi/nivo combo for a 2nd time? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-done-the-ipi-nivo-combo-for-a-2nd-time/#post-275526 Fri, 20 Aug 2021 14:13:39 -0400 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…Read more

]]> 5dbb84e51d411ffdde3609168872691c Threefitty replied to the topic Next step: Clinical Trials in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/next-step-clinical-trials/#post-275396 Sat, 24 Jul 2021 20:13:58 -0400 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,…Read more

]]> 523faf7e15d4bed6bd076ddb13349f2d Threefitty replied to the topic Ipi Nivo tips in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-tips/#post-275119 Fri, 25 Jun 2021 13:56:42 -0400 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…Read more

]]> 81a43dbd1d25cb8796f5c18e2e37ff43 Threefitty replied to the topic Adrenal Node Growing in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/adrenal-node-growing/#post-275038 Sat, 19 Jun 2021 01:10:47 -0400 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.…Read more

]]> e50e49add6dd7aae202bb8fc79cdf2a4 Threefitty replied to the topic Seriously Confused Need some assistance and optimism in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/seriously-confused-need-some-assistance-and-optimism/#post-274874 Mon, 31 May 2021 13:16:44 -0400 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…Read more

]]> 22678f2ae05d3e08291cb53786bb6130 Threefitty replied to the topic NRAS Mutation- help on the way? in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/nras-mutation-help-on-the-way/#post-274867 Sun, 30 May 2021 18:50:51 -0400 Just one person’s experience. Braf wild/NRAS positive. My MD mentioned an NRAS related  trial he is involved in (U Miami/Sylvester.)

https://clinicaltrials.gov/ct2/show/NCT04109456?term=NRAS&recrs=ab&cond=Melanoma&cntry=US&draw=2&rank=1).

I would be possibly  heading for it myself, but I am still having some response to immuno. (Not clear w…Read more

]]> bc9e830cb75d30c0f50155c91882d031 Threefitty replied to the topic When the triplet fails... in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/when-the-triplet-fails/#post-274668 Sun, 09 May 2021 00:43:11 -0400 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…Read more

]]> ee85c09ac48506dc67d0e3e35064bce1 Threefitty replied to the topic Castle Bioscience funding support of new "Ask and Expert" video series? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/castle-bioscience-funding-support-of-new-ask-and-expert-video-series/#post-274584 Fri, 23 Apr 2021 16:37:09 -0400 “…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 l…Read more

]]> 916259b86022e031d1c7259f0aee0b32 Threefitty replied to the topic ship is taking on water in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ship-is-taking-on-water/#post-274532 Sat, 17 Apr 2021 21:48:39 -0400 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…Read more

]]> 0e70e0f896bb151a1c445a1c1357b6c5 Threefitty changed their profile picture https://forum.melanoma.org/activity/p/3093/ Sat, 10 Apr 2021 17:50:24 -0400 0 cf7bb903622b7c12033eac69d46b9028 Threefitty replied to the topic Immunotherapy post colitis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/immunotherapy-post-colitis/#post-274487 Sat, 10 Apr 2021 17:34:20 -0400 My first immuno tx was in a clinical trial in 2017 where I got optivo only (unblinded now)

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…Read more

]]> 735f8bd3a1e4e7c87b10df98d7f02171 Threefitty replied to the topic Iplimumab/Nivolumb after unsuccessful Nivolumab in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/iplimumab-nivolumb-after-unsuccessful-nivolumab/#post-274349 Thu, 11 Mar 2021 01:32:08 -0500 I was a stage 3B adjuvant optivo recipient in a clinical trial in 2017. Also then progressed; spleen, stomach, neck in 1/20.

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…Read more

]]> 57acd8536ad4365559d917e66125136d Threefitty replied to the topic Colitis Pembrolizumab (Immunotherapy) + Lenvatinib. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/colitis-pembrolizumab-immunotherapy-lenvatinib/#post-274231 Tue, 16 Feb 2021 00:47:45 -0500 I have experienced Yervoy activated colitis 2x. Stage 4 guy.

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…Read more

]]> e8a28cb8b73366c82ccd9028e4f2ab35 Threefitty replied to the topic Treatment for Brain Mets - Need some shared experiences please in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/treatment-for-brain-mets-need-some-shared-experiences-please/#post-274230 Tue, 16 Feb 2021 00:24:58 -0500 I’m somewhat in your boat. Many brain mets after a bottom falling out. Taking the combo – it may be helping.

Just completed 10 factors of WBR over 2 weeks, I haven’t educated myself on the particulars.

I just really liked my brain guy’s attitude…”you know, we’re coming in with the wide brain, but if we don’t get it all we sometimes come back…Read more

]]> e3f8aa991a6fbd192b1fd0ed14018e59 Threefitty replied to the topic Medical use of Cannabis in the forum Caregiver Community https://forum.melanoma.org/forums/topic/medical-use-of-cannabis/#post-274229 Tue, 16 Feb 2021 00:12:30 -0500 Medical MJ use can definitely help curb opiate reliance. I have 5 mg oxys as needed. Have never taken 2 at the same time but 2 over 6 hours is quite a pleasant evening. Much prefer to have a gummy or vape of cannabis and not go down the road of gaining opiod tolerence.

There have been a day or two though where the opiod does provide a level of…Read more

]]> de13e14a7279e68e515e5e03a49b21c7 Threefitty started the topic Bird shot mets after response; any familiarity with this? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/bird-shot-mets-after-response-any-familiarity-with-this/ Fri, 11 Dec 2020 15:18:40 -0500 Hi,

I progressed to S4 in Jan 2o with mets in spleen, neck and stomach. I had failed Optivo in a 2017-18 CT.

I got 2 treatments of the ipi/optivo combo after progression, then 2+ months colitis which the Onc now says “nearly killed me”. Had 6 weeks in hospital in total.

The scan after discontinuation of treatment showed no cancer.…Read more

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