Melanoma Research Foundation | sing123 | Activity https://forum.melanoma.org/user/sing123/activity/ Activity feed for sing123. Mon, 16 Mar 2026 12:17:34 -0400 https://buddypress.org/?v= en-US 30 hourly 2 883d967e209158e4945a759b15d5c98d sing123 replied to the topic 5 Year Nedaversary! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/5-year-nedaversary/#post-278215 Tue, 07 Feb 2023 19:15:29 -0500 Super congrats! Hope you celebrated for days!

]]> 0f3a0f24288fc155696e9e2149efaff2 sing123 started the topic Happy News! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/happy-news-3/ Tue, 10 May 2022 21:07:15 -0400 Last week I reached what I had not before, 2 years NED!!! My last 2 year scans revealed that melanoma had metastasized to my brain. I underwent treatment for SRS, and although I did not then have any detectable cancer, opted for ipi/nivo, of which my body was only able to comfortably tolerate a single infusion.

I am so happy. I will not be…Read more

]]> 6fca5246e0081ead18e0b965ad7f8c52 sing123 replied to the topic Quick message of hope (and thanks!) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/quick-message-of-hope-and-thanks/#post-276691 Mon, 02 May 2022 18:04:46 -0400 John, thanks so much for your joyful post! Wonderful to read of your enduring good health. Timely for me as am getting scans tomorrow. Last time I was at the 2 year mark, docs told me melanoma had spread. Hoping for better news this go round. And so your uplifting words resound.

Wishing you all continued good health,

Cindy

]]> 552e64372907a3715ed6e241ab35ef30 sing123 replied to the topic Still NED - Almost 5 Years in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/still-ned-almost-5-years/#post-276311 Wed, 09 Feb 2022 20:17:57 -0500 Jenn, so much congrats to you! Your five years is well within sight. Hope you are planning a fabulous celebration.

Best,

Cindy

]]> 85ada01b024e44ca9deabdd5045e53e7 sing123 replied to the topic 35 Year Old with Stage IV Melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/35-year-old-with-stage-iv-melanoma/#post-276179 Tue, 04 Jan 2022 00:09:44 -0500 Grace, thank you for sharing your story and I am glad that you are feeling so much better. Something that I have struggled with as a survivor is that melanoma does not always progress/get treated in a linear way. But so fortunately, our amazing docs and researchers have/are developing more than one trick up their sleeve to outsmart the disease.…Read more

]]> 3c065564b3414981eccf469240bda8f5 sing123 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-276178 Mon, 03 Jan 2022 23:59:07 -0500 Jen, wonderful news! Happy New Year to you.

]]> 47cdb3773fdfa7dae51a8a9df43d5bc4 sing123 replied to the topic Sad news from Joanne Towens. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/sad-news-from-joanne-towens/#post-276177 Mon, 03 Jan 2022 23:57:15 -0500 Very sad about MarkR. His getting treatment in Israel (based in part on his amazing donors, which must have made him feel greatly cared for and supported) sounded so promising. Thinking of his family.

]]> aaf5c731b3a3a3c1001b458f8873647c sing123 replied to the topic Happy New Year - an update and some intel in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/happy-new-year-an-update-and-some-intel/#post-276176 Mon, 03 Jan 2022 23:53:30 -0500 Wow so much to catch up on in these 3 weeks since I’ve been off the forum. The brain mets/low survival study sounds heavy (as a symptomatic brain met survivor). The loss of MarkR. Celeste’s news about increased chance for other cancers. But good news as well with new and promising treatments. All goes in the compost heap, doesn’t it? Happy New Y…Read more

]]> 44ada644d1e965f7414c79d26487b11a sing123 replied to the topic NED for 2 Years in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ned-for-2-years-2/#post-276175 Mon, 03 Jan 2022 23:44:08 -0500 Yay! This is wonderful news! Much congrats.

]]> e6bee9079e6b212712207f9007371714 sing123 replied to the topic Update in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-46/#post-276071 Tue, 07 Dec 2021 21:09:59 -0500 Marc,

Much congrats on your 5 years! Ottawa is a beautiful place. Am sure your music makes it more so.

Best,

Cindy

]]> 8dc4ae82eb22ca565df567b3bfa89ef3 sing123 replied to the topic Update in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-46/#post-276070 Tue, 07 Dec 2021 21:09:31 -0500 Marc,

Much congrats on your 5 years! Ottawa is a beautiful place. Am sure your music makes it more so.

Best,

Cindy

]]> 68d98ef5e8a965280afd610d17e0674f sing123 replied to the topic Success on Temodar? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/success-on-temodar/#post-276021 Tue, 23 Nov 2021 20:38:40 -0500 Dear Amanda, so hard. Good to know you had a response from the ipi/nivo. My doc says that if my cancer returns, I will go right back on the combo as it seems to have kept it at bay. I think response takes a bit of time. Fingers so crossed for you to have a durable response.

]]> 2c9510c09d3bdabebf2dafa0e7a16b1e sing123 replied to the topic More vitiligo….yay!!! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/more-vitiligo-yay/#post-275981 Mon, 15 Nov 2021 16:43:08 -0500 This is wonderful, Christina! I don’t have any. But my melanoma specialist doc says it is a good sign of a response. Wear it proudly.

]]> a764da1afde6bde95ab2e0ce4b72ccf2 sing123 replied to the topic Stomach Mets in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/stomach-mets-2/#post-275959 Tue, 09 Nov 2021 21:21:32 -0500 Hi Amanda, I often think of you and hope that you are doing well. Only to add to those above, how about a daily avocado and some of the higher fat nuts, such as cashews and macadamian? And as much olive oil as you tolerate, added to your cooked veggies. Hang in there and keep us posted as you can.

]]> 1aa93435d0d78f625cde258e685dfcd6 sing123 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-275958 Tue, 09 Nov 2021 21:15:26 -0500 It is scary but this is a different era for brain mets. I was NED for 2 years (after a recurrence) when 3 brain mets popped up. SRS (including 1 to a tumor almost too big to zap with this protocol and inaccessible through surgery), taking steroids while getting immunotherapy which is supposedly a no no as it is thought to compromise effectiveness,…Read more

]]> 9473af58ef5b3c182140c331f7655517 sing123 replied to the topic The Benefits(!) Of Melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/the-benefits-of-melanoma/#post-275957 Tue, 09 Nov 2021 20:55:37 -0500 Wow. Thanks for sharing this, both of you. My latest CT report was way more descriptive than previously and noted minimal calcification on non-aortic arteries. Oh boy. Will be following up.

]]> fabc9cbca317f67edb5e5461fc84aaaa sing123 replied to the topic NED, But in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ned-but/#post-275782 Sun, 03 Oct 2021 17:10:33 -0400 Hi Ted. Will be keeping fingers crossed for good news! Keep us posted.

]]> f3d7e8178f0d20ddfcdacac5f1bec210 sing123 replied to the topic Brain mets found after being declared NED 3 months ago in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-found-after-being-declared-ned-3-months-ago/#post-275781 Sun, 03 Oct 2021 17:07:44 -0400 Jenn, I had 3 brain mets (also a shock after NED) and the radiation was not as bad as I would’ve thought. I don’t even recall being very tired afterwards. I do recommend that you consider talking to oncologist about immuno after. This is based on advice from Dr. Jeffrey Weber.  I decided to go with combo and was only able to tolerate one of the…Read more

]]> fb4b713618782c3f680540f4531298a5 sing123 replied to the topic Who is NED for 5 or more years? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/who-is-ned-for-5-or-more-years/#post-275732 Sat, 25 Sep 2021 13:39:26 -0400 Wow! These are wonderful to read! And much congrats to Sole for recently joining this club!

]]> 6d3ef8057305d53c14cf475dd4875a84 sing123 started the topic Thoughts on possible recurrence in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/thoughts-on-possible-recurrence/ Tue, 03 Aug 2021 16:06:29 -0400 Hi guys. Have had a headache for more than a week (same side of head as previous brain mets) and am going in for an MRI tomorrow.  As soon as I got the appointment, and follow up appointment with radiation oncologist same day, I stopped feeling so anxious. I’m coming to recognize the thin line between thinking every little twinge is recurrence,…Read more

]]> d2ddf2cb3290e00412537cb193a18953 sing123 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-275382 Thu, 22 Jul 2021 03:03:49 -0400 Amanda, have been thinking of you. A proactive attitude is wonderful and I hope that this is the very last treatment to get you durable NED.

Best to you and your family,

Cindy

]]> 8056ed0cccc3827ed7fe4753b0de9908 sing123 replied to the topic now stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/now-stage-4/#post-275381 Thu, 22 Jul 2021 03:00:38 -0400 Ellen, hope it all goes well. Keytruda has been formidable for many.

Best to you,

Cindy

]]> db8568720a40e540c83e79388bd4098d sing123 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-275380 Thu, 22 Jul 2021 02:57:19 -0400 Tim, so sorry for all the ups and downs. Hope your pain has gone by now and that it is smooth sailing with the rest of the treatment.

Best,

Cindy

]]> 544c8c45ebded6812f5b87744a2331c7 sing123 replied to the topic Who is NED for 5 or more years? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/who-is-ned-for-5-or-more-years/#post-275313 Thu, 08 Jul 2021 13:51:04 -0400 Charlie S, you are grand! Thanks so much for posting.

]]> a3c69fde3bd0c6dd01a395365d2de9f8 sing123 replied to the topic Who is NED for 5 or more years? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/who-is-ned-for-5-or-more-years/#post-275300 Wed, 07 Jul 2021 01:38:55 -0400 Wow, it is wonderful to read these words. Thanks all!

]]> 0e24a4d3c382353e1b597cf310362130 sing123 replied to the topic Synthroid vs. Lexothyroxidine for Hypothyroidism as an Adverse Event of Immuno in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/synthroid-vs-lexothyroxidine-for-hypothyroidism-as-an-adverse-event-of-immuno/#post-275299 Wed, 07 Jul 2021 01:37:33 -0400 <p style=”text-align: left;”>Thank you so much for your responses. I am Day 2 of thyroid med and hoping for some relief within this next month!</p>

]]> 5e1d2b5fcd69e15fd8239996a4b16a1a sing123 replied to the topic Synthroid vs. Lexothyroxidine for Hypothyroidism as an Adverse Event of Immuno in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/synthroid-vs-lexothyroxidine-for-hypothyroidism-as-an-adverse-event-of-immuno/#post-275279 Sat, 03 Jul 2021 17:36:32 -0400 Thank you so much for your prompt responses. I am so hopeful that the thyroid med will make my extreme fatigue and feeling faint at the most inopportune moments a thing of the past!

]]> b9eb5cb651b482da4e9037d6db73049e sing123 started the topic Synthroid vs. Lexothyroxidine for Hypothyroidism as an Adverse Event of Immuno in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/synthroid-vs-lexothyroxidine-for-hypothyroidism-as-an-adverse-event-of-immuno/ Thu, 01 Jul 2021 20:13:24 -0400 Hi all! Any advice on whether S or L is preferable for those of you with a high TSH (name brand vs. generic)? I also take Hydrocortisone 3 x a day for adrenal insufficiency and have been recommended to take the first of that and the thyroid pill upon waking but not to take them together. I suspect that my before leaving house a.m. coffee will have to go!

]]> d6542fc5d90532d71811266d7e9827c5 sing123 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-275186 Mon, 28 Jun 2021 15:25:23 -0400 Sandy, I am so very sorry for your loss. May you can in some small way feel peace in the great comfort you provided your husband as caretaker. Big hugs to you and your family.

]]> c161acc4c1981b20b60557fcbd34880d sing123 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-275185 Mon, 28 Jun 2021 15:18:14 -0400 Tim, my melanoma specialist at Mayo Jax told me (and showed me through stats) a lack of correlation between the number of doses given and overall survival and progression free survival. For this reason, I have only had one infusion of ipi/nivo! Because I immediately had side effects. I have just reached the one year mark of NED as a Stage 4 person.

]]> f9660f8ac7277b6fd80358ab217556c5 sing123 replied to the topic Julie in SoCal in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/julie-in-socal-2/#post-275183 Mon, 28 Jun 2021 15:03:17 -0400 I had been thinking of her also. Am so sorry to hear this.

]]> 6f649521810a034b22c6e1dd60f2e969 sing123 replied to the topic Another Round of Good News in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/another-round-of-good-news/#post-274928 Mon, 07 Jun 2021 23:24:01 -0400 Super good news! Much congrats!

]]> a56bab80fa569ef411e7200c299e59b7 sing123 replied to the topic Lag-3 + Nivo vs Nivo clinical trial data released from ASCO in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lag-3-nivo-vs-nivo-clinical-trial-data-released-from-asco/#post-274927 Mon, 07 Jun 2021 23:22:47 -0400 Wow, Ed! Sounds quite promising. Thank you so much for always doing your due diligence and for sharing it with all of us.

]]> 5cffa145000fcac8b8e7c2e7dd2be119 sing123 replied to the topic Thyroid in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/thyroid-3/#post-274773 Mon, 24 May 2021 18:52:22 -0400 Thanks, Steve33! Hope you are feeling well.

Best,

Cindy

]]> 98e8cd0f7f4717db7d1565633ea1093b sing123 started the topic Thyroid in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/thyroid-3/ Fri, 21 May 2021 19:36:18 -0400 Greetings all! Just had scans and am 1 year NED (again but I’ll so happily take it!)

However, blood work shows a high TSH (7.8), though my other thyroid tests (such as T4) are normal. Since my one dose of ipi/nivo, I’ve lost adrenal function/ability to create cortisol and am on a permanent maintenance dose of hydrocortisone to replace it. Could…Read more

]]> 1b4205c2e0138278b0902d73b0d832aa sing123 replied to the topic Mom of Jake - for the old friends here in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/mom-of-jake-for-the-old-friends-here/#post-274743 Fri, 21 May 2021 19:20:52 -0400 Kerri, I am so very sorry for your loss. May it bring you some small peace to know that your son was surrounded by love.

]]> 11fe73201fd076d4278946ff9efb5279 sing123 replied to the topic Mixed Results — looking for my next treatment option in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mixed-results-looking-for-my-next-treatment-option/#post-274416 Sun, 28 Mar 2021 04:26:26 -0400 Amanda, I’ve been wondering how you are doing. I’m so sorry that the triple approach has been mixed. Huge that you are feeling well. Will keep my fingers crossed for you that the next treatment will be the charm. Keep hope. We all are along with you.

Best,

Cindy

]]> 118659aa7fa4aca26aec3ba079a5c87b sing123 replied to the topic Long time no talk...some curious things happening in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/long-time-no-talk-some-curious-things-happening/#post-274415 Sun, 28 Mar 2021 04:14:33 -0400 Hi there. Have you considered getting an MRI? I would just to rule out that there are no mets in your brain. I had terrible migraines and that is how they discovered my brain mets. But I didn’t have them in the morning. And they were accompanied by auras. And I had no vomiting. Since you have had migraines before, maybe they’ve come back. I wou…Read more

]]> 90ad4a4e5d12f502be1a69aeef6322cb sing123 replied to the topic Still NED????? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/still-ned-4/#post-274377 Tue, 16 Mar 2021 14:28:43 -0400 So glad to hear your good news! Am

sure it was emotionally stressful. But the best outcome!

]]> 09f74f4b796ae8a477a1799a96d5f05e sing123 replied to the topic Still NED????? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/still-ned-4/#post-274370 Mon, 15 Mar 2021 16:37:02 -0400 Hi Ted, I hope you get great news. I recently had an aching feeling in my lymph nodes and got an all clear from my scan. With Spring approaching (don’t know where you are) might it be a reaction to pollen? Please keep us posted.

Best,

Cindy

]]> b4fc598f40743d953c9771488ff372eb sing123 replied to the topic Adrenal Insufficiency in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/adrenal-insufficiency-3/#post-274291 Sat, 27 Feb 2021 22:00:27 -0500 <p style=”text-align: center;”>MelWave, Lucas, and John, thank you. Lucas, I have also heard that hydrocortisone is better as maintenance replacement for cortisol than is Prednisone. Having said that, and as you said, MelWave, it is not a perfect solution.</p>
MelWave, I’m sorry to hear that your partner has to be on Hydrocortisone. Are you t…Read more

]]> 99809bdc4d156aa90f9397d2ce364023 sing123 replied to the topic Adrenal Insufficiency in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/adrenal-insufficiency-3/#post-274277 Tue, 23 Feb 2021 19:44:04 -0500 Thanks for your prompt responses! I am very grateful that so far, my one dose of ipi/nivo (after a year of nivo and the recurrence in my brain) may be helping prevent recurrence. Lucas, I am sorry to hear that it went undiagnosed for so long. Did you have to have a hospital stay? Due to an adrenal crisis? I guess what I am confused about is how…Read more

]]> a391e13a3d0c3eeb372a420d757ebc91 sing123 started the topic Adrenal Insufficiency in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/adrenal-insufficiency-3/ Mon, 22 Feb 2021 20:29:00 -0500 Greetings, all. I’ve alternately been on Dexamethasone, Prednisone, and now Hydrocortisone in the past year (starting in June 2021 with the occurrence of brain mets). I am on Hydrocortisone as a maintenance steroid as my adrenals do not produce adequate cortisol. I take a 20 mg dosage, divided between 15 mg in the morning and 5 mg at lunch time. I…Read more

]]> a40302787f1d786bb172d2ed27f588bd sing123 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-274273 Mon, 22 Feb 2021 20:19:20 -0500 Hi there! I started getting the worst headaches I’d ever had and this is how my brain mets were diagnosed. I had 3, 1 very small, 1 medium sized, and 1 almost too big for the doctor to radiate. He did SRS back in July, and they’ve not recurred. And just had an MRI and it was all clear! Good luck and best to you and your husband.

 

]]> 31260addb5a896e5d423485a26974a6b sing123 replied to the topic Melanoma Mike in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/melanoma-mike-8/#post-273770 Wed, 30 Dec 2020 04:16:36 -0500 This is so very sad. He had such a big and joyful personality. That I feel a loss, that we feel a loss,  means that his personal family and friends must feel one much greater. I will not soon forget his kind and caring presence on this forum.

]]> e464e58858c7587dfab32fbdca4d48e4 sing123 posted a new activity comment https://forum.melanoma.org/activity/p/366/#acomment-590 Wed, 30 Dec 2020 04:06:44 -0500 I am so very sorry for your loss.

In reply to - MelanomaMike posted an update Hello, I hope this goes out to all of Mikes followers. My husband passed away on Thursday December 17th, 2020. I want to say thank you to everyone. Thank you, Mike is missed so. He […] ]]> 1a5643159cec79f1cb47b429f78875c5 sing123 started the topic Does diet matter? Does casein matter? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/does-diet-matter-does-casein-matter/ Sat, 05 Dec 2020 00:13:04 -0500 Hi all, Hope everyone is enjoying the season and staying warm. I myself am in Florida and freezing!

Sooo, I am trying my hand at the whole food plant based diet. I have never been on a diet before other than to not eat gluten as I feel much better when I don’t. Being on a diet is making me feel deprived and as if I don’t want to be on it.…Read more

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