Melanoma Research Foundation | kathycaribe | Activity https://forum.melanoma.org/user/kathycaribe/activity/ Activity feed for kathycaribe. Thu, 23 Apr 2026 06:19:21 -0400 https://buddypress.org/?v= en-US 30 hourly 2 1273b51287aba4a3303feaca836612a1 kathycaribe replied to the topic Brain met stats are so horrific (>3) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-met-stats-are-so-horrific-3/#post-275936 Fri, 05 Nov 2021 12:30:54 -0400 thanks everyone! i’m very encouraged!

]]> b675bf36847c4906aa1a3206fbbe32de kathycaribe replied to the topic Update Stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-stage-4/#post-275935 Fri, 05 Nov 2021 12:29:35 -0400 i had a full body rash after ipi/nivo #1 but well managed w/zyrtec, benadryl, adn 30mg pred.  good luck!

]]> ff6245e80103647f21bcb0fd90ad52f8 kathycaribe replied to the topic Brain met stats are so horrific (>3) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-met-stats-are-so-horrific-3/#post-275925 Thu, 04 Nov 2021 14:44:11 -0400 ok bubbles, im encouraged for more than 4-5 months. 🙂 thanks so much!

]]> 6cd8a56803c8b51f61bd0dcbbfae17e0 kathycaribe started the topic Brain met stats are so horrific (>3) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-met-stats-are-so-horrific-3/ Sun, 31 Oct 2021 19:02:26 -0400 No tx and 3-4 months, all kinds of stuff tried (WBRT, ICI) and I get 4 more. This is so depressing trying to fight to conserve neurocognitive when I likely won’t be alive in half a year.

Does anyone have good stats? I have a T10-12 lesion treated w/SRS, 1 lung nodule, 9 brain mets tx w/SRS early 9/21 and now 10-15 brain mets after 2 courses of ipi/nivo.

]]> 87db6e31494f77ac19761926992c3035 kathycaribe replied to the topic WBRT vs repeat SRS. delay of 3rd cycle ipi nivo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/wbrt-vs-repeat-srs-delay-of-3rd-cycle-ipi-nivo/#post-275907 Sun, 31 Oct 2021 18:22:34 -0400 If you do WBRT, look into (HA)hippocampal shielding and concomminnt use of memantine to decrease neurocog deficits. WBRT+HA+ secondardy met pass has good results compared to WBRT alone from my research. Not a lot out there if you have multiple mets tho

]]> 636502a53cec3567c27df5646e4dedc6 kathycaribe started the topic WBRT vs repeat SRS. delay of 3rd cycle ipi nivo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/wbrt-vs-repeat-srs-delay-of-3rd-cycle-ipi-nivo/ Fri, 29 Oct 2021 22:25:56 -0400 I presonally prefer SRS as i had it already and few side effects. My brain mets have increased from 9 to 10-15 int the past 2 months and the oncs are concerned about that growth rate and want to stop the current cycle to do WBRT. MD Anderson onc thinks it could be that few of the new mets are too small and may hemorrhage with SRS.

Has anyone been…Read more

]]> e9d6b06bf83166aae767a8b63374d5f1 kathycaribe replied to the topic PCP prophylaxis during ICI in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/pcp-prophylaxis-during-ici/#post-275828 Sun, 10 Oct 2021 22:50:25 -0400 Thanks so much! That makes a lot of sense.

]]> 800339e491a69650e8f74084983ddd57 kathycaribe started the topic PCP prophylaxis during ICI in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/pcp-prophylaxis-during-ici/ Sun, 10 Oct 2021 11:56:20 -0400 Has anyone been on PCP prophylaxis during immunotherapy with or without steroids? My MD Anderson doc put me on Bactrim and aggressively warned me off dex and now that I’m off dex I’m thinking (and this seems to be backed up by studies https://link.springer.com/article/10.1007/s00277-021-04452-9 ) and this study seems to indicate increased risk for…Read more

]]> ccb320bd77dcd24f91c611571bc69f37 kathycaribe replied to the topic Ipi Nivo colitis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-colitis/#post-275717 Tue, 21 Sep 2021 13:39:11 -0400 I spent much of yesterday going through the AIM videos. THank you SO MUCH for those!!!!

]]> ec69b257a677faeb05172045005d2327 kathycaribe replied to the topic Ipi Nivo colitis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-colitis/#post-275712 Fri, 17 Sep 2021 18:45:26 -0400 I would personally remove all dairy and processed foods but I’m sure that’s not very helpful. Walking is good. Drinking lots of water will move things along in the gut. No narcotics will keep peristalsis going. maybe increasing good gut bacteria (probiotics) but I seem to remember a study indicating weird (both positive and negative?) issues with…Read more

]]> 3b2b624181fabd6fc832c361c57efd05 kathycaribe replied to the topic use of Avastin as a steroid-sparing agent prior to immunotherapy (ipi+nivo) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/use-of-avastin-as-a-steroid-sparing-agent-prior-to-immunotherapy-ipinivo/#post-275711 Fri, 17 Sep 2021 18:42:00 -0400 I can’t get into my company melanoma onc until end October but I actually have an appointment with MD Anderson at the end of this month with their melanoma person. They won’t do evistis with my state so I have to go in person. I suppose I could try to get in before next Friday with them and see what they say….

]]> 8a5ee7797fb0403cdb019840f0091739 kathycaribe replied to the topic use of Avastin as a steroid-sparing agent prior to immunotherapy (ipi+nivo) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/use-of-avastin-as-a-steroid-sparing-agent-prior-to-immunotherapy-ipinivo/#post-275702 Fri, 17 Sep 2021 15:19:59 -0400 Thanks so much Celeste. I know I’m coming off half crazed 🙂 and it is probably because the team I thought was going to lead the way has been in stasis all week and I”m getting no input from the melanoma oncologist and my primary oncologist is breast cancer (but she is at my workplace, which makes GETTING immunotherapy incredibly easy – she comes…Read more

]]> 2c4b97b8646afd6b0a43e4e0e3889517 kathycaribe replied to the topic use of Avastin as a steroid-sparing agent prior to immunotherapy (ipi+nivo) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/use-of-avastin-as-a-steroid-sparing-agent-prior-to-immunotherapy-ipinivo/#post-275697 Fri, 17 Sep 2021 00:42:11 -0400 I understand that Immunotherapy + brain SRS=good outcome, however, my oncologist totally dropped the ball and didn’t even start on immunotherapy approval until well after I completed the SRS so that ship has sailed. I am on way too much steroid right now, during spine radiation treatments, to start immunotherapy, so that ship is waiting to sail.…Read more

]]> 42d99f01f578f03f7c27ba661dc2d464 kathycaribe replied to the topic use of Avastin as a steroid-sparing agent prior to immunotherapy (ipi+nivo) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/use-of-avastin-as-a-steroid-sparing-agent-prior-to-immunotherapy-ipinivo/#post-275693 Thu, 16 Sep 2021 18:28:01 -0400 FWIW, my neuroonc is with a smaller organization, my onc is with a university-level and I have also established care at Mayo. I have requested input from the Mayo onc but have been waiting since Monday for a reply. Getting antsy.  🙂

Second question – I have established care with MD Anderson also (gotta love RN healthcare) and wondered if that…Read more

]]> 0279a25b9c30253a891f831c57434ee3 kathycaribe's profile was updated https://forum.melanoma.org/activity/p/7938/ Thu, 16 Sep 2021 18:19:34 -0400 0 dead2e53a56107e4cf8ad5736db0f3da kathycaribe started the topic use of Avastin as a steroid-sparing agent prior to immunotherapy (ipi+nivo) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/use-of-avastin-as-a-steroid-sparing-agent-prior-to-immunotherapy-ipinivo/ Thu, 16 Sep 2021 18:16:57 -0400 Hello. I am trying to determine the best course of action when my oncologist disagrees with my neurooncologist on the possible use of Mvasi as a steroid sparing agent and taper my current dose of dexamethasone 8mg/day. I received SRS to 9 brain mets for 6 sessions, ending 9/3. I began 10 spinal radiation treatments for a T12 met on 9/10 and the…Read more

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