Melanoma Research Foundation | Beany | Activity https://forum.melanoma.org/user/beany/activity/ Activity feed for Beany. Tue, 21 Apr 2026 16:29:03 -0400 https://buddypress.org/?v= en-US 30 hourly 2 ad53b9ec61a2113f716bdeebadbf73d6 Beany replied to the topic A little encouragement from a 7 year stage 4, TIL, Rad, Chemo, Immuno, survivor. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/a-little-encouragement-from-a-7-year-stage-4-til-rad-chemo-immuno-survivor/#post-280152 Thu, 04 Apr 2024 17:54:51 -0400 Excellent reading and encouraging. Thank you.

]]> 9ae07ca7d64c3b17c2da9f66c1f29462 Beany replied to the topic Still Here! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/still-here-3/#post-279217 Mon, 18 Sep 2023 10:40:23 -0400 Thank you all very much

]]> 58ad77840723ea60489d42e99e3d5d62 Beany replied to the topic Still Here! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/still-here-3/#post-279207 Fri, 15 Sep 2023 07:04:04 -0400 Hello chrispl1974,

Thank you for your reply. Cured! I thought that was a word that they never used! Althoug I have heard Dr Weber use that word in some Youtube videos.

Thanks again,

]]> 8547e75a94cb794267e2220cecee02e1 Beany started the topic Still Here! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/still-here-3/ Wed, 13 Sep 2023 06:08:16 -0400 Hello everyone,

Originally 2C in 2019 but moved on to 4 in Feb of 2020.
Well, I had 13 mets in my liver, 3 in my lungs, and one in my brain in February 2020. After 3 doses of the combo, I had high liver numbers 713/565 and went to Cellcept and Prednisone. The doctor looking after me refused to let me go on the single dose of Opdivo because of the…Read more

]]> 165f9fc8c849d5b099834e507c2ac0d1 Beany's profile was updated https://forum.melanoma.org/activity/p/79044/ Wed, 13 Sep 2023 05:52:35 -0400 0 37fe009b6233ffb173c1b5bfb3af759b Beany started the topic how careful should I be about UV rays after diagnosis? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-careful-should-i-be-about-uv-rays-after-diagnosis/?view=all Sat, 20 May 2023 00:33:13 -0400 hello everyone,
I am coming up on 2 and half years after stage 4 with lung, liver, and one brain met. Luckily the combo therapy took care of those. I have been on opdivo single now for two and a bit years.
My question is how careful should I be about the sun? I use cream and a hat. Should I be paranoid and really completely cover up?
Can getting…Read more

]]> c82c5c2dc0e6fc4188d989b89150b533 Beany replied to the topic 4th infusion and no side effects in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/4th-infusion-and-no-side-effects/#post-278009 Fri, 30 Dec 2022 10:04:30 -0500 Hello,
I have had 20 infusions of nivo and no side effects. I am currently NED.

]]> edb728aadbc6ef70451609ae36b77f35 Beany replied to the topic immunotherapy affected liver-any advise? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/immunotherapy-affected-liver-any-advise/#post-277628 Sun, 30 Oct 2022 13:15:04 -0400 I was way higher with AST 650 and ALT 752.
Prednisone and mmf for one year before resuming opdivo only.
Tumors shrank during prednisone.

]]> ffac7be43b152545ea2c35fc3b939a58 Beany replied to the topic Maintenance Opdivo after NED: How long? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/maintenance-opdivo-after-ned-how-long/#post-276793 Sat, 04 Jun 2022 21:28:57 -0400 Hello JudiAU,

Thanks for your input too. So, it seems that where all you people are located the standard is two years after clean scans. I imagine that will take at least two years for those guidlines to filter down to Japan as everything here seems to move slowly.
That booster shot of Opdivo sounds interesting. Is that common? I haven’t heard…Read more

]]> 0e4cb1d501e285cd9304b03f0d10f1e4 Beany replied to the topic Maintenance Opdivo after NED: How long? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/maintenance-opdivo-after-ned-how-long/#post-276756 Wed, 18 May 2022 04:00:57 -0400 Hello Bubbles and Cindy,
Thank you both for your replies. Bubbles thank you delivering again. That clip and the transcript you kindly provided is amazing in terms of OS for patients after immunotheraphy. I would like to show that to my Japanese onc!

Cindy, your input too was helpful.

Soldier on!

]]> 31d0c3ea4f06219717bf2af64bd9b945 Beany started the topic Maintenance Opdivo after NED: How long? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/maintenance-opdivo-after-ned-how-long/ Tue, 17 May 2022 02:40:30 -0400 Hello everyone,

Long time since posting but I read this forum every night before sleeping.
Here is my story:
Feb 2019: Stage 2c ulcerated 5.5mm, BRAF neg, lymph nodes clear, observation after surgery
Feb 2020: mets to lungs, liver, brain
Feb 2020: Opdivo and Yervoy three times before high enzymes, ALT 759, AST 650
Apr 2020: predonine and MMF…Read more

]]> ededec28438f2a6adcfe2d822f762738 Beany replied to the topic I rang the bell today, folks! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/i-rang-the-bell-today-folks/#post-276246 Fri, 21 Jan 2022 13:55:50 -0500 Congratulations

]]> 1a16598ba8f049266338c90bc740615d Beany replied to the topic Hair loss/thinning in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/hair-loss-thinning/#post-276152 Wed, 29 Dec 2021 14:22:42 -0500 Hello,
I had hair loss for the first six months. Then it stopped and my hair has　grown back. I also went curly!

]]> 99164ad8e4cdd3a4f3f23dfc0399b853 Beany replied to the topic PET Scan & Lymph Nodes in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/pet-scan-lymph-nodes/#post-276107 Thu, 16 Dec 2021 13:32:06 -0500 <p style=”text-align: right;”>Sorry i do <!–more–>not know. Anyone?</p>

]]> 39f4fcb210cac852571bff20d2a14215 Beany replied to the topic Brain mets have shrunk after Cyberknife radiation and Braf/Mek in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-have-shrunk-after-cyberknife-radiation-and-braf-mek/#post-276106 Thu, 16 Dec 2021 13:30:21 -0500 <p style=”text-align: right;”>Well done</p>
Jenn. Great result.

]]> ca9f49e3084f108c3da5ab6d7d566c7d Beany replied to the topic Christmas gift for Stage 2B and 2C melanoma patients in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/christmas-gift-for-stage-2b-and-2c-melanoma-patients/#post-276094 Mon, 13 Dec 2021 05:25:13 -0500 Thank you Caman,

I remember asking the doctor to give me Nivo or something similar when I was stage 2c and scared. He said he wasn’t allowed. Well, I went on to stage 4 after that!

Japan is quite a way behind North America in terms of treatment. The use of 480mg of Opdivo, which I am on, was only approved in December 2021.

Regards to everyone,

 

]]> ad1517a641dd96beaca3ec21be29adbf Beany replied to the topic Anyone have large tumor burden that is now NED in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/anyone-have-large-tumor-burden-that-is-now-ned/#post-275826 Sun, 10 Oct 2021 13:56:02 -0400 Wow johnjk04, that is a wonderful outcome. Very happy for you. It  is inspiration for everyone.

Christinad、I had 13 tumors in mg liver, three in my lungs and one in my brain. Last two scans shows only a scar (most likely) in my brain. I think that is what Ed described as NEAD. Lung tumors shrunk quickly–about .195 mm per day but the brain tu…Read more

]]> f04ba3cf0cffb123035e21e7dfa89544 Beany replied to the topic Potential Brain mets - terrified in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/potential-brain-mets-terrified/#post-275606 Mon, 06 Sep 2021 13:42:51 -0400 I had a brain met which was only found out months after my liver and lung tumors were discovered. My doctor didnt do a full body scan either.

<!–more–><!–more–>

]]> 74fe32c7ee0c4462d02744e23d06b3b0 Beany replied to the topic Last combo infusion in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/last-combo-infusion/#post-275487 Fri, 13 Aug 2021 12:07:48 -0400 Hello,

I only got through three combos before having drug induced liver damage or very high AST and ALT. ALT was 748. I  was in hospital gor two months and steroids for one year.

I am on the single dose of opdivo now and have zero side effects.

Regards,

]]> d1ae0fc7009d9708d212c2d8d58bd53d Beany replied to the topic Liver Mets and immunotherapy in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/liver-mets-and-immunotherapy/#post-274789 Wed, 26 May 2021 01:40:17 -0400 Hello,

I had 12 tumors in my liver and after three combo infusions, they nearly disappeared. I also had inch-long tumors in both lungs which are now gone. I am pretty sure this is a high-tumor burden. I agree with what Bubbles said: ” In my humble opinion, the data in this report is muddled with that.” My latest scans in April showed nothing…Read more

]]> a2563fe483457b4dd737cc05998aec71 Beany replied to the topic Back on the Opdivo. Scans looking promising. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/back-on-the-opdivo-scans-looking-promising/#post-273703 Thu, 24 Dec 2020 02:22:41 -0500 Thanks to everyone for your replies and encouragement. Very good of you all. Wishing you a merry Christmas and   happy new year.

Sincerely

]]> e0945197e467c23cde769a4c18878550 Beany replied to the topic Back on the Opdivo. Scans looking promising. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/back-on-the-opdivo-scans-looking-promising/#post-273497 Fri, 18 Dec 2020 04:40:45 -0500 Hello tkoss,

Thanks for your comments. Luckily no side effects yet, but I am aware that they may come anytime.

 

Regards,

]]> 51765b6b8bc5636b6bb3d89539cc4ebf Beany started the topic Back on the Opdivo. Scans looking promising. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/back-on-the-opdivo-scans-looking-promising/ Fri, 18 Dec 2020 01:13:38 -0500 Hello everyone,

I have finally been given the all-clear to start on single does of Opdivo twice a month after going through the elevated ALT enzymes drama. Prednisone is down to 5mg a day. I have finished the second of 26 infusions and the ALT actually went down to 23 after my first infusion. Surprisingly, I haven’t noticed any side effects as of…Read more

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