Melanoma Research Foundation | tim brown | Activity https://forum.melanoma.org/user/timbo699/activity/ Activity feed for tim brown. Tue, 21 Apr 2026 17:00:11 -0400 https://buddypress.org/?v= en-US 30 hourly 2 bcd77d49dd710320772afb371cff8e7c tim brown replied to the topic New treatments. Reached a plateau? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-treatments-reached-a-plateau/#post-275898 Thu, 28 Oct 2021 15:26:39 -0400 Hi Ed,
I’m not in disagreement about any of this – perhaps it’s because I appear to be in the 60+% immune checkpoint failure group that I think the thrust of my question is a valid one for open debate. (Add on the almost complete lack of progress for those 15-20% who are saddled with the NRAS mutation.)
Best,
Tim

]]> a43d2bd56fed26ac8e38eef09d968286 tim brown started the topic New treatments. Reached a plateau? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-treatments-reached-a-plateau/ Thu, 28 Oct 2021 09:01:06 -0400
  • When I was diagnosed with metastatic melanoma in April 2019, my oncologist made great play of the fact that if surgery was unsuccessful, checkpoint inhibition was a wonderful resource which had transformed the treatment of the disease. No argument there.
    20 months later, I view the landscape differently. Firstly, there has been a degree of…

Read more

]]> 3100224f869b03e34a68cad25c4bfdcf tim brown replied to the topic Is it more common in people of color to have melanoma? in the forum Caregiver Community https://forum.melanoma.org/forums/topic/is-it-more-common-in-people-of-color-to-have-melanoma/#post-275851 Sat, 16 Oct 2021 08:25:28 -0400 20 times less likely to get melanoma, so it does ‘discriminate’ in one sense

]]> 147b5042b1d612fee4986fe7bb22c069 tim brown replied to the topic I got my first scan result today after completing four doses of ipi/nivo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/i-got-my-first-scan-result-today-after-completing-four-doses-of-ipi-nivo/#post-275788 Tue, 05 Oct 2021 06:03:05 -0400 That’s great news.  Fingers crossed 🤞

]]> 308a82a1a5858b174cba43003a832087 tim brown replied to the topic Ipi/Nivo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-5/#post-275778 Sun, 03 Oct 2021 08:45:57 -0400 Thanks Ed- I was aware that lack of accurate  predictive bio markers is the Achilles heel of melanoma oncology (Dr Jason Luke is big on this, I believe).
Much as I appreciate the treatment I’ve received here in England, I’m not sure my team did a great job on the histo-pathology side. After my first op (axilla excision – I am MUP) the path…Read more

]]> c5500e77fc6912353cb1ed2a84a669e8 tim brown started the topic Ipi/Nivo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-5/ Sat, 02 Oct 2021 06:42:01 -0400 Looking for information on the range of clinical   conditions when the Ipi/Nivo combo is most effective. Can’t find the relevant data.

Tim

]]> 51743e41e484a6f2077fae7b9addb7da tim brown replied to the topic Ipi Nivo colitis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-colitis/#post-275714 Fri, 17 Sep 2021 20:46:45 -0400 Thanks Kathy and Ed,

I had a vague memory that probiotics wasn’t recommended but I’ll watch Dr Davies

]]> 707cdf01182ccf01bb6a72fa64a55f16 tim brown started the topic Ipi Nivo colitis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-colitis/ Fri, 17 Sep 2021 16:35:40 -0400 In mid July I had  my first Ipi/Nivo infusion but had to stop due to surgery to remove a rapidly  growing tumour in my axilla at the start of August. (I have the NRAS mutation). I’m restarting in a couple of weeks time and if the first infusion was anything to go by, then  diarrhea/colitis is likely to be my principal adverse event.
Any advi…Read more

]]> a7e0e98350525e7c59fea21345388490 tim brown replied to the topic Weber discusses ASCO 2021 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/weber-discussed-asco-2021/#post-275518 Thu, 19 Aug 2021 08:41:58 -0400 Weber really is a top man – and shows his class by finding a way to criticize Lex Eggermont’s somewhat bizarre Pembro follow up trial without causing offence.

]]> f8e608a63e8de107b089848bcc20121c tim brown replied to the topic Advice, please in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/advice-please-6/#post-275514 Tue, 17 Aug 2021 16:05:27 -0400 Great response Celeste (as ever!) .
I was being slightly provocative on the superstar question- it probably reflects my suspicion for ‘surface’ traits and quick fixes that permeate most aspects of our chaotic lives these days.

T <!–more–>

]]> 2d97b83fd0a7f1b8d99010774264042a tim brown replied to the topic Advice, please in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/advice-please-6/#post-275509 Tue, 17 Aug 2021 07:43:00 -0400 Hi Mark,

Many thanks for your  response. Some thoughts:

1) In general, I’m happy with my treatment. The speed of response in the most challenging of times has been astonishing. My issue is that now that I’m marked down under the  ‘palliative’ banner, I detect a subtle,  unconscious change of mindset.

2) My lesions grow too quickly for TVEC.…Read more

]]> 0a6125f09a0efdde66676822264a43a4 tim brown started the topic Advice, please in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/advice-please-6/ Sun, 15 Aug 2021 20:28:55 -0400 Me: UK based, unknown primary March 2020. Full lymph node axillary excision April 2020. Staged at 3C and Braf wild but Nras positive, and put on adjuvant Pembro  in June 2020. No side effects of any note until local Progression in Feb 2021.  Further surgery on axilla on March 2021. And the  disease returned (Groundhog day) in June and I took fi…Read more

]]> 47ebc526517fc0872ca1816b529d8e20 tim brown replied to the topic Antibiotic may kill cancer cell in melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/antibiotic-may-kill-cancer-cell-in-melanoma/#post-275392 Fri, 23 Jul 2021 07:26:04 -0400 I’m with Bubbles in this one. Yes,  Big Pharma are fair game for criticism and I’m all for keeping an open mind.
That said, there are literally thousands of  very talented scientists and researchers who make it their life’s work to find cures for melanoma and other cancer.  Random miracle cures sell papers and get people talking.  I’ll go with the…Read more

]]> 23a6480a0e6b0c9c23377f3b6e62fef0 tim brown replied to the topic Antibiotic may kill cancer cell in melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/antibiotic-may-kill-cancer-cell-in-melanoma/#post-275391 Fri, 23 Jul 2021 07:12:28 -0400 I’m with Bubbles on this one – and every other ‘miracle cure’ for that matter. Yes, I agree that it’s right to be open minded and think outside the box. However, there are literally thousands of extremely talented scientists and researchers  who have made it their life’s work to find cures for melanoma and other cancers.  By and large, these rando…Read more

]]> eb20018bbfa686eae9bbeef5c2a2c51e tim brown replied to the topic Forever changed - Quality of Life after Melanoma (and how to help) - ASCO 2021 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/forever-changed-quality-of-life-after-melanoma-and-how-to-help-asco-2021/#post-275352 Wed, 14 Jul 2021 14:21:16 -0400 Good on you, Ted (as we say here in England). Thanks for posting and I wish you well

Tim

]]> 768905e4b1e542c9c8ecddd0c7538569 tim brown replied to the topic Forever changed - Quality of Life after Melanoma (and how to help) - ASCO 2021 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/forever-changed-quality-of-life-after-melanoma-and-how-to-help-asco-2021/#post-275345 Tue, 13 Jul 2021 14:45:42 -0400 Grateful for this, Bubbles.
I’m starting Ipi/Nivo on Friday so many of these issues are uppermost in my mind

]]> 9693b09bae9d08797a0a0a52faaad5ec tim brown replied to the topic ASCO 2021 - studies for Mucosal Melanoma and NRAS positive patients in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/asco-2021-studies-for-mucosal-melanoma-and-nras-positive-patients/#post-275241 Wed, 30 Jun 2021 20:38:00 -0400 Thanks Celeste,

Anything on NRAS is always of interest. There’s a lot of us about!
tim

]]> c4ee3a06024371e0eba4b9438fa46bb8 tim brown replied to the topic Ipi Nivo tips in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-tips/#post-275202 Tue, 29 Jun 2021 06:56:27 -0400 Hi Mark,
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 cr…Read more

]]> e6f13df278d88d9ffb8b5efd6cb85446 tim brown replied to the topic Ipi Nivo tips in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-tips/#post-275177 Mon, 28 Jun 2021 09:25:44 -0400 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.

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 th…Read more

]]> 026d8b3a4a3f57958a0edf9724dd3e64 tim brown replied to the topic Ipi Nivo tips in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-tips/#post-275175 Mon, 28 Jun 2021 04:35:58 -0400 Thanks for this Mark.
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…Read more

]]> 360390acf1b08b696228303121fcd69f tim brown replied to the topic Ipi Nivo tips in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-tips/#post-275161 Sun, 27 Jun 2021 15:36:06 -0400 Thanks for that Jenn- very useful. I have been pretty fit most of my life (I’m 64) but I know my diet needs attention!!

]]> 6fb41a67e1398e2bcadc966ff159f5f3 tim brown replied to the topic Ipi Nivo tips in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-tips/#post-275151 Sun, 27 Jun 2021 04:56:16 -0400 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.

I am unlucky enough to have the NRAS (Q61) mutation, so the initial growth has been rapid. C’est la vie…Read more

]]> 624114bf0a77b97ee8988a03524d5a08 tim brown replied to the topic Non completion of Ipi/Nivo combo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/non-completion-of-ipi-nivo-combo/#post-275141 Sat, 26 Jun 2021 12:49:02 -0400 Thank you guys- most interesting. Mel: When I was introduced to adjuvant Pembro, I  was lead to believe that there was no correlation between adverse events and efficacy. Are you saying this isn’t the case with the combo, or was I misinformed?

]]> b78182bbd226b02b952024f6792f2866 tim brown started the topic Non completion of Ipi/Nivo combo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/non-completion-of-ipi-nivo-combo/ Sat, 26 Jun 2021 07:37:32 -0400 About to start Ipi/Nivolumab combo and one of my concerns is whether I will be able to tolerate the regime given that I contracted colitis  –  admittedly at level 1/2- whilst on adjuvant Pembro.

I think I read a paper that suggested  inability to complete the 4 initial doses doesn’t necessarily mean there won’t be a positive response. Can’t…Read more

]]> fb4eeac213375ad9ec27018384cf20b3 tim brown replied to the topic Ipi Nivo tips in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-tips/#post-275125 Fri, 25 Jun 2021 18:15:38 -0400 Many thanks for these replies – they make a lot of sense

Tim

]]> 7a89b871374e98f06f4a2d0c75f554f0 tim brown started the topic Ipi Nivo tips in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-tips/ Fri, 25 Jun 2021 12:14:40 -0400 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)

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 anecd…Read more

]]> 67aa164e8a74b3ae8acd190553cd1ca9 tim brown replied to the topic Recurrence in Axilla - again in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurrence-in-axilla-again/#post-275022 Thu, 17 Jun 2021 06:05:54 -0400 Hi Mark- yep, I think I’ll buy into your analysis /critique of UK health provision where melanoma is concerned!

I’m lucky to be living in an area that is judged to be excellent in cancer provision and the speed of  service I received was stunning during the Covid tsunami of 2020. Now that normality is returning, the service is slowing down…Read more

]]> 2b960b21bd79e93e2b505f492852ee0b tim brown replied to the topic Recurrence in Axilla - again in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurrence-in-axilla-again/#post-275018 Wed, 16 Jun 2021 16:39:35 -0400 Thanks for your response Mark. You make an interesting point about adjuvant pembro. Did it fail totally or slow progression?  The answer to that question wasn’t really addressed by my onc. team – I’m in UK and it was merely noted as anti PD1 failure. Low grade colitis kicked it at the time of the progression as well.

]]> 72479c9d1e38fc41e3d65d5b4bed8fea tim brown replied to the topic Am I the only one, who finds the new forum software/ layout very annoying ? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/am-i-the-only-one-who-finds-the-new-forum-software-layout-very-annoying/#post-275017 Wed, 16 Jun 2021 13:49:10 -0400 Yep, not fit for purpose, it pains me to say

]]> 9982646f762811ea949533d53b878c6e tim brown started the topic Recurrence in Axilla - again in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurrence-in-axilla-again/ Tue, 15 Jun 2021 15:53:28 -0400 I was Staged at  3C after axilla clearance in April 2020. Adjuvant pembro was stopped after recurrence in same spot in Feb 2021. Further surgery in March and MRI and PET/CT scans were all clear at the end of May.

Looks like it’s returned to the same location.
Surgeon has no margins left and it seems as if the Ulna nerve is at risk. Anybody had a…Read more

]]> 5498fd2a231f59ccbaa27f6670668b6b tim brown replied to the topic For Tim re NRAS Mutation - help on the way in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/for-tim-re-nras-mutation-help-on-the-way/#post-274872 Mon, 31 May 2021 07:23:57 -0400 <p style=”text-align: left;”>https://www.fda.gov/news-events/press-announcements/fda-approves-first-targeted-therapy-lung-cancer-mutation-previously-considered-resistant-drug</p>
this was the original article

]]> e54ebc318bd8bb02f0cf3916dc0abab0 tim brown replied to the topic For Tim re NRAS Mutation - help on the way in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/for-tim-re-nras-mutation-help-on-the-way/#post-274871 Mon, 31 May 2021 05:47:03 -0400 Thanks  Celeste/Bubbles, you are a star.
Tge complexity of the RAS pathway is mind boggling and let’s hope advances in AI can open the door to our particular knave- NRAS

 

]]> 7c29d0fa3da2c13254b67fec02261029 tim brown started 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/ Sun, 30 May 2021 07:44:17 -0400 One for Ed, Celeste and the boffins:

Like 20% of BRAF wild types, I have the NRAS tumor mutation. I failed on adjuvant PD1 and I am recovering from further surgery on the axilla in early March. This mutation is generally bad news when immunotherapy fails. One oncologist researcher famously deemed NRAS to be it ‘undruggable’. (Admittedly, MEK inh…Read more

]]> e4ec90a11b26499da85f51468d73d2b9 tim brown replied to the topic Lag-3 data starting to come in and combination of Lag-3+Nivo shows great PFS in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lag-3-data-starting-to-come-in-and-combination-of-lag-3nivo-shows-great-pfs/#post-274740 Fri, 21 May 2021 06:41:20 -0400 Looks like a valuable tool in the arsenal.

Questions:

1. Does this mean that Ipilumimab will take another backward?

2. Any utility in trying Relatlimab/Ipi as a combo of last resort

3. The prospects of  a triplet combo?

4. What’s the likely timeframe for FDA approval?

]]> bf4f587d85f2d92ae7333a2b7baaf09a tim brown started the topic Colitis on Pembro in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/colitis-on-pembro/ Fri, 14 May 2021 11:44:00 -0400 One for the Eggheads.

I progressed after 7 months on adjuvant Pembro. First 6 months were a breeze, then I got low level colitis, followed immediately by progression. Coincidental timing? I read somewhere that colitis could actually be an indicator that immunotherapy is working!

]]> 7a0e5617be03fe9babc743489c41092d tim brown replied to the topic PHGDH Inhibitor NCT-503 in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/phgdh-inhibitor-nct-503/#post-274647 Tue, 04 May 2021 13:10:00 -0400 Interesting conversation. I’m nowhere near as well read or knowledgeable as Ed, but I read an interesting criticism of the clinical trial process when the novel checkpoint drug or combo fails, which has sadly been the case recently.
The writer, a European melanoma researcher / oncologist demanded that the details of the ‘failures’ be made known…Read more

]]> 082fbf57c7d4db64e2e54bc3c4858708 tim brown replied to the topic Where’s the data on Relatlimab in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/wheres-the-data-on-relatlimab/#post-274593 Sun, 25 Apr 2021 16:01:36 -0400 Many thanks,Ed. I’m new to this forum (and melanoma) so I found your reply most  interesting and informative. Take care and best wishes from England

]]> 7cd9d5f6c6c3cb500837cd7f7707734f tim brown started the topic Where’s the data on Relatlimab in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/wheres-the-data-on-relatlimab/ Sun, 25 Apr 2021 06:42:07 -0400 It’s over a month now since BMS issued a Press Release stating that their checkpoint inhibitor anti LAG/3 drug Relatlimab had been successful in Phase 2/3 trials in combination with Nivo. As a PD/1 failure, I am especially keen to digest the efficacy figures. Why the delay?

]]> 3bbb5ef8dd92e829061cf74dcb3031fa tim brown replied to the topic Staging Question in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/staging-question-4/#post-274525 Sat, 17 Apr 2021 14:37:50 -0400 Thanks Ted, that’s the answer I want! .

I guess the alternate view is that the lymph nodes were the secondary location (by proxy),  ergo it has spread. Onwards and upwards

]]> 929fde31d12b9ec1b6cbaa0c843fd3bb tim brown started the topic Staging Question in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/staging-question-4/ Sat, 17 Apr 2021 07:24:17 -0400 Hi there from Oxford, England (or Eng-er-land as you folks sometimes pronounce it). I am Tim, 63,  a retired Intelligence Officer and aspiring author.

Brief Summary: April 2020. Massive lump in left axilla – thought to be lymphoma related but diagnosed melanoma of Unknown primary(MUP). No co-morbidities, so performance status of zero (PS o…Read more

]]> 8821a19ef6ea362288c588e3b2fd83db tim brown became a registered member https://forum.melanoma.org/activity/p/3189/ Sat, 17 Apr 2021 06:44:40 -0400 0