Melanoma Research Foundation | ThinkingPositive | Activity https://forum.melanoma.org/user/thinkingpositive/activity/ Activity feed for ThinkingPositive. Tue, 21 Apr 2026 17:00:11 -0400 https://buddypress.org/?v= en-US 30 hourly 2 fbe8bddca3f47632f437c1bd42500bb1 ThinkingPositive replied to the topic Just had stage 1a removed , nervous in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/just-had-stage-1a-removed-nervous/#post-277878 Sun, 04 Dec 2022 02:19:49 -0500 Hi luberhill, melanoma can be so sneaky like that. I’m sorry you’re dealing with it again. I didn’t realize that genetic testing changes the staging. Hard to wait, best wishes…Cindy

]]> 77f8ea84d924e3faac38487d68061940 ThinkingPositive 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-277599 Thu, 27 Oct 2022 10:07:32 -0400 Best wishes on a great scan Greg!
Cindy

]]> 48556a37c690c1594232aacff0acc982 ThinkingPositive replied to the topic New Derm does own pathology - should I be concerned? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-derm-does-own-pathology-should-i-be-concerned/#post-277598 Thu, 27 Oct 2022 10:04:07 -0400 Hi M,
My dermatologist also has a pathologist on staff. In the last year, lesions were identified (BCC and moderate atypical) and I was referred to the university where a repeat of the pathology and treatment was done. It was right on.
Best wishes!
Cindy

]]> e4018a7b942a2fac7fb6c75c82138bae ThinkingPositive replied to the topic 5 Year Nedaversary! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/5-year-nedaversary/#post-277323 Fri, 30 Sep 2022 00:58:07 -0400 Great news Bill! If I might ask, how long is surveillance? I had a complete response and stopped pembro 8 months ago and get CT scans every 3 months.
Cindy

]]> 55fcb14593dea6387520ccea870d444a ThinkingPositive replied to the topic Can nodular melanoma come and go? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/can-nodular-melanoma-come-and-go/#post-277188 Thu, 01 Sep 2022 00:55:36 -0400 Hi Annette, you’ll want your doctor to look at that. It does sound like blood blister though.
Cindy

]]> c9d5bef9a7924959157fa418d5fa9d4a ThinkingPositive replied to the topic Keytruda treatments in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/keytruda-treatments/#post-277134 Sun, 14 Aug 2022 09:56:51 -0400 Hi Karen Sue,
I’m sorry you are dealing with side effects to treatment. It is unknown how long the diarrhea will last after triggered by Keytruda. Thankfully, melanoma survivors are now living because of immunotherapy (Yay)! However, the side effects from treatment are challenging. My oncologist is seeing diarrhea as a side effect but no answers…Read more

]]> fffea1abb989539bbf1d12c2e787e419 ThinkingPositive's profile was updated https://forum.melanoma.org/activity/p/25187/ Fri, 05 Aug 2022 10:15:01 -0400 0 ba4ad8da59c52c18f776f3ca2c5fe13f ThinkingPositive replied to the topic Failed TIL in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/failed-til/#post-277091 Fri, 05 Aug 2022 01:26:28 -0400 Daisy you are such a pioneer. I really wished TIL worked for you and I’m sorry for your disappointment not to mention the suffering that went along with the treatment.
Hugs to you as you decide the next step.
Cindy

]]> 33f3b4a3d5f9f6ea7cc458d1ddc601c8 ThinkingPositive replied to the topic Is pink nodular melanoma ever soft and not visually growing? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/is-pink-nodular-melanoma-ever-soft-and-not-visually-growing/#post-277056 Wed, 27 Jul 2022 08:57:50 -0400 Hi Skip,
Melanoma can look different than the classic poster on the wall of the exam room. Also, there are so many different kinds of lesions, many benign. So, two more days to wait for biopsy results! In the mean time, breathe! We can get ourselves worked up when facing the unknown. You could also see your dentist about the jaw pain and the lymph…Read more

]]> c03d21357ffd291fccf7f9396603358e ThinkingPositive replied to the topic 5-year NED mark in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/5-year-ned-mark/#post-277041 Thu, 21 Jul 2022 12:06:23 -0400 Dear Sister,
Congratulations to your sister and your family! Immunotherapy has made such a difference to many of us.
Best,
Cindy
1 year NED

]]> d8eabc7c0ea107320f1ca559f018e07a ThinkingPositive replied to the topic Covid question, please help !!! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/covid-question-please-help/#post-277016 Sat, 16 Jul 2022 09:39:37 -0400 Hi Anxietyallday,
I agree with Celeste. Also, I had Covid in November 2021 while on pembro (stage 4) and I continued to have great response to the immunotherapy. Now NED for one year!!!
Have a good weekend!

PS I don’t have my smell back yet but I intend to get it back:)
Cindy

]]> 4f5f0def19e00a8e835e9ee85d454a2d ThinkingPositive started the topic Melanoma Patient Forum in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/melanoma-patient-forum/ Wed, 13 Jul 2022 00:50:42 -0400 Hello All,
There are several videos from the Melanoma Patient Forum posted yesterday https://youtu.be/ZaLLQmjnYuQ

]]> 7b44ab2a56741e55693e9de85cede4ae ThinkingPositive replied to the topic NED 2 years - stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ned-2-years-stage-4/#post-276919 Wed, 29 Jun 2022 01:30:41 -0400 Great news Affinity! I wish you the best going forward too!!!

]]> ef482a9ad7357d369fe0502b38d55742 ThinkingPositive replied to the topic Dad partially diagnosed three months ago. No one's doing anything. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/dad-partially-diagnosed-three-months-ago-no-ones-doing-anything/#post-276892 Thu, 23 Jun 2022 02:02:35 -0400 Hi Keisha,
In addition to the others advice, make sure your name is listed as a contact at all his doctors. That way, now and when you move, you can have access to his patient portals and speak to clinical staff .
I had a lot of that monitoring my dad’s appointments. But that’s what we do for family and loved ones.
Best, Cindy

]]> ba926c001e6d79bdf37a120076c1f7f6 ThinkingPositive 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-276755 Tue, 17 May 2022 23:38:07 -0400 Hi Adam, I reached NED after 10 months on pembro and my onc said I need to stay on for 18 months minimum to 24 months max. I jumped off at 18 months with next CT scan in July! So far, 4 months since last infusion and getting my energy back.

Wishing you well!
Cindy

]]> 944c55fa2923d6e3208ede867c590c4a ThinkingPositive replied to the topic Pembro Side-Effects in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/pembro-side-effects/#post-276735 Sat, 14 May 2022 12:08:26 -0400 Hi Kimbo,
Ed gave a great response and I’ll chime in with my experience. I was on Keytruda for 18 months and experienced several grade 1 adverse events, thankfully not at the same time. After every 6 week infusion, there was a “bloom” of symptoms. Sometimes it was a rash, itchiness, nausea, or joint pain. Always fatigue and a feeling my body was…Read more

]]> 5ee87751827afc6bdb83066a4077f395 ThinkingPositive replied to the topic 6 year anniversary and reminder in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/6-year-anniversary-and-reminder/#post-276698 Wed, 04 May 2022 15:23:26 -0400 That’s great news Steve! Also, good reminder to stay on track with derm visits. Sorry to hear about another melanoma! Here is an article on new primary melanoma lesions after immunotherapy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7495326/

I had a WLE two weeks ago for a moderate atypical nevus, and don’t like the two inch incision, but do…Read more

]]> 1cd721e9cb311fb2f9ec0d37c6321475 ThinkingPositive 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-276671 Fri, 29 Apr 2022 00:25:46 -0400 Your news is so good to hear John! You are one of the lucky ones where surgery was enough to heal you. I feel lucky too, having fell into the melanoma world after pembrolizumab was approved.
Take care! Cindy

]]> 5759f2767e00feeb4ea352ffe442f94a ThinkingPositive replied to the topic A pregnant mum with melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/a-pregnant-mum-with-melanoma/#post-276650 Mon, 25 Apr 2022 12:05:13 -0400 Hi Luckymm,
I can understand how the waiting is hard; there is a lot to learn about melanoma and what your treatment plan will be. From what I read, pT2a is Pathologic staging, which = clinical Stage 1B, so best case scenario is you stay at 1B after the wide excision .

Insurance covered all of my exams, surgeries, and treatments.

Please post…Read more

]]> 6be94f32bc16f4a644b9a56db3e1043d ThinkingPositive replied to the topic Possible recurrence after 5 years… need a crash course on the latest treatment in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/possible-recurrence-after-5-years-need-a-crash-course-on-the-latest-treatment-2/#post-276631 Fri, 22 Apr 2022 11:52:23 -0400 Hi AZ,
Sorry to hear about the lump. The needle biopsy will be the next step. I’ve been reading about the new approval for Opdualag (https://www.cancernetwork.com/view/fda-approves-nivolumab-relatlimab-combo-for-unresectable-or-metastatic-melanoma) although the drug’s clinical trial enrolled only previously untreated melanoma patients. My doctor…Read more

]]> 070421890635d9e5bee7e64e57e346a1 ThinkingPositive replied to the topic Subcutaneous reaction ??? in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/subcutaneous-reaction/#post-276613 Mon, 18 Apr 2022 12:01:58 -0400 Hi anxietyalldaylong,
There are different types of subcutaneous lumps, both benign and melanoma. Whenever I have had worries over a new lump, I have called my dermatologist between appointments and had it looked at. Mine have been benign lipomas but I always get it checked out especially between scans. I also have an oncology nurse I can call for…Read more

]]> 3ba44ef5d5ef284f4418797323436440 ThinkingPositive's profile was updated https://forum.melanoma.org/activity/p/17244/ Mon, 18 Apr 2022 00:07:11 -0400 0 339643e2121793dc9cb335f605ab565e ThinkingPositive replied to the topic Surgical error to remove melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/surgical-error-to-remove-melanoma/#post-276612 Mon, 18 Apr 2022 00:04:18 -0400 Hi Penny,
Medical errors are horrifying and I sure hope your situation gets cleared up right away.
Cindy

]]> 05f2e1a9ab510681176d7e59a5a7faeb ThinkingPositive 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-276513 Thu, 24 Mar 2022 11:56:26 -0400 Thank you for sharing your experience with your father. Medical care should not only be patient-centric, but family centered as yours was.

I was privileged to be with my father the last 48 hours along with Hospice. At that stage, any palliative medications given are not the cause of death, but the alleviating of possible suffering. Your father…Read more

]]> 66015848f4f7949d80b8ba7b5e693a4e ThinkingPositive replied to the topic Update BillB in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-billb/#post-276512 Thu, 24 Mar 2022 11:46:37 -0400 GREAT news Bill! I’m so glad for you!!!
Cindy

]]> 57981b5a2ada8f7e0e29d6ea507953a4 ThinkingPositive replied to the topic Zometa or Denosumab in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/zometa-or-denosumab/#post-276456 Sat, 12 Mar 2022 02:35:05 -0500 Hi Daisy, I was on Zometa initially with my first infusion of pembrolizumab and immediately ran fevers and got joint pain. Doctor thought it was the Zometa so after steroids and a rest I started on Xgeva. I thank pembrolizumab for my side effects (arthralgia, diarrhea, weight loss, itchyness). By the way, I just went to every three months for the…Read more

]]> 6d47f283973cde66a58d8489605f4795 ThinkingPositive replied to the topic Battling Metastatic Melanoma is a Lonely Experience in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/battling-metastatic-melanoma-is-a-lonely-experience/#post-276364 Sun, 20 Feb 2022 01:28:37 -0500 Hi BTM,
I have always received great support in this forum. Melanoma is one word but has so many facets. What has your treatment been so far? My info is in my bio.
In the forum You can search topics such as side effects and learn what others done to deal with it. For me, my latest issue after 18 months, keytruda gifted me with a nasty bout of…Read more

]]> 8d7a45182937c1f1c641c04428a484fd ThinkingPositive replied to the topic Imaging question ? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/imaging-question/#post-276318 Thu, 10 Feb 2022 01:31:34 -0500 Hi, I was on Keytruda for stage 4, and my scans were at 5 months, 10 months , and 17 months. NED since the 10 month mark.

]]> af2fbb434187727eb2543d380803c3c2 ThinkingPositive 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-276287 Sun, 06 Feb 2022 14:14:06 -0500 That is so encouraging to hear of your 5 year NED anniversary! Congratulations and wishing you continued health! Cindy

]]> 28ba9e408a678762196e2d9084ebf3a8 ThinkingPositive replied to the topic medicare prescription drug quandry in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/medicare-prescription-drug-quandry/#post-276266 Thu, 27 Jan 2022 23:14:25 -0500 Hi Tkoss,
Your oncologist or nurse may be able to guide you on potential treatment plans, but if you are pressed to make a decision I would recommend reading Celeste’s links to her library of research articles on treatments for those progressing to stage 4 (which I hope you are not)! I didn’t have to make the drug plan choice as it is part of my…Read more

]]> 1fed6ef0658f5896259e64bb3abcfe1c ThinkingPositive replied to the topic Loss of Taste in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/loss-of-taste/#post-276265 Thu, 27 Jan 2022 01:33:37 -0500 Hi Kevin,
I lost smell which decreased my taste after COVID in November. I put my homemade sauerkraut on everything as sour was the only flavor I can sense. Keep finding ways to get good nutrition and I hope your taste comes back in time.

]]> d0154eae712ee66d352ae2b6b082baaa ThinkingPositive's profile was updated https://forum.melanoma.org/activity/p/12770/ Sat, 22 Jan 2022 22:55:14 -0500 0 654aff14d7914a26c8c479ece6c896f4 ThinkingPositive started 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/ Tue, 18 Jan 2022 21:54:42 -0500 Today was my last pembrolizumab, 18 months since starting. I had complete response as of June 2021 PET scan which was 10 months into my treatment for metastatic mel including bone involvement. The nurses made a great fuss over me and I even got a certificate signed by them (see profile pic).

]]> 4ec61b81648d871074f16a021c497a62 ThinkingPositive changed their profile picture https://forum.melanoma.org/activity/p/12594/ Tue, 18 Jan 2022 21:43:05 -0500 0 4cb013c79be4becda48a9b140a8a1e04 ThinkingPositive 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-276166 Mon, 03 Jan 2022 00:47:36 -0500 Thanks Celeste for your scholarly reporting. I asked my oncologist about the ct DNA and she said it is the future.

]]> fb7a711a4bf2be778779cd38d0151af8 ThinkingPositive 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-276121 Sat, 18 Dec 2021 23:38:47 -0500 Such good news! Bravo!! Also inspires hope I will ditto that too!

]]> 35771db2ed5d0f3db33e71f1b2524320 ThinkingPositive replied to the topic 98th dose of Nivolumab in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/98th-dose-of-nivolumab/#post-276099 Tue, 14 Dec 2021 01:11:21 -0500 Hi Gregg and Ed,

My oncologist is stopping my pembro in January if scan is complete response again.  That will be 17 months of infusions. She said there was no standard for stopping but some studies (SafeStop) are looking at this.

]]> 092e58994c904baea19060c17b1715b2 ThinkingPositive replied to the topic More Melanoma Hijinks in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/more-melanoma-hijinks/#post-275967 Thu, 11 Nov 2021 20:25:16 -0500 Hi Amanda,

Sorry to hear about another Mel. My dermatologist shared this article with me: https://pubmed.ncbi.nlm.nih.gov/32936222/

which was interesting that we could get a new cutaneous melanoma. I’m wondering whether systemic ICI can reach the skin layers.  Since CM is so hard to visually diagnose as you experienced, I am going to talk to m…Read more

]]> 706e229db414ae547af485156271f69b ThinkingPositive replied to the topic WLE / SLNB - what to expect? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/wle-slnb-what-to-expect/#post-275833 Mon, 11 Oct 2021 10:20:41 -0400 Hi JD_NY,

For me, the dye injection on my nose to locate the SLNs hurt but that was brief. I was under anesthesia for the WLE and SLNB, same day surgery, and had no pain afterwards. I took the next day off from work mainly to recover from anesthesia, but was able to work after that as I did work from home and didn’t need to see people. That was…Read more

]]> 0aae088f823d25c1e82bc89bfb957d98 ThinkingPositive replied to the topic New diagnosis, slow process, concerned in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-diagnosis-slow-process-concerned/#post-275817 Fri, 08 Oct 2021 23:27:13 -0400 Hi Lyn, I had a large bump removed that biopsied melanoma and subsequently had plastics do wide excision, sentinel lymph node biopsy, and finally staging. I also needed a graft on my nose. If your mom is independent, all of this is doable. She will need a driver to and from surgery. Wishing her the best outcome!
Cindy

]]> 713f3e927be43b1f859ce6888b09113c ThinkingPositive replied to the topic Irregular heart rate in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/irregular-heart-rate/#post-275688 Wed, 15 Sep 2021 23:04:31 -0400 Thanks for the idea MelWave, however, thyroid and all labs normal as usual. I’ll have to wait and see what the recommendations are, hopefully do nothing and live with it. Palpitations with no known cause can be common from what I’ve read.

Best,

Cindy

]]> 02289cdbcda4f6b861d74abe9d70f85f ThinkingPositive started the topic Irregular heart rate in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/irregular-heart-rate/ Wed, 15 Sep 2021 08:47:12 -0400 Hello…I noticed an irregular heart rate in June, the evening I started doxycycline for a bullseye rash. I have been on Keytruda now for 13 months, achieving complete response by the 10th month. I was also on Xgeva monthly for a bone mets, now to be every three months; and had covid vaccine in February/March.

My PCP dismissed it as no concern…Read more

]]> ad35503beb8b53c259d07122340d0b9c ThinkingPositive replied to the topic now stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/now-stage-4/#post-275376 Wed, 21 Jul 2021 23:51:44 -0400 Hi Ellen, best wishes as you start treatment and win this ball game. To encourage you, I started pembro 8/25/20 and last month achieved complete metabolic response.  I am grateful for this technology and the grace of having many positive factors in my favor.

Keep up your strong determination!
Cindy

]]> cfa893aa88a59af8a6ba5ed722647efd ThinkingPositive replied to the topic Immunology and the COVID vaccine in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/immunology-and-the-covid-vaccine/#post-275342 Tue, 13 Jul 2021 10:00:43 -0400 Hi Deb14hat,

I’m on Keytruda and had the Pfizer-BioNTech COVID-19 vaccine doses in Feb and March, in-between my scheduled 6 week infusions. My June scan showed complete metabolic response, so in the short time between my vaccinations and the scan, there was no evidence the vaccines interfered with the efficacy of pembro. Small studies are…Read more

]]> e861fd8ecac5d71d77483331c2aa534a ThinkingPositive's profile was updated https://forum.melanoma.org/activity/p/5426/ Wed, 30 Jun 2021 09:17:12 -0400 0 cdf6a9b9c01f817951f83bf098b78671 ThinkingPositive replied to the topic Primary Dermal Melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/primary-dermal-melanoma-6/#post-275230 Wed, 30 Jun 2021 09:14:40 -0400 Hi Danilo-

That’s great news that PDM did not spread. I didn’t find much searching Google Scholar, but here is one abstract that might be reassuring to you about good outcomes: https://www.sciencedirect.com/science/article/abs/pii/S0748798320304406

Wishing you well!

]]> 5d8dc4e66930dbb64b508bb12be66209 ThinkingPositive replied to the topic Arthritis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/arthritis/#post-275049 Sat, 19 Jun 2021 22:57:57 -0400 Hi Trent, here is more on the topic of arthritis:

To quote: “Key messages:

Immune checkpoint inhibitor (ICI)-induced inflammatory arthritis (IA) may persist after ICI cessation.

Longer ICI exposure, receipt of combination ICI therapy and a history of other immune-related adverse events increase the risk of IA persistence.

Immunomodulatory…Read more

]]> c4c47e0ab5286aac01bdf28b1643108b ThinkingPositive replied to the topic Arthritis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/arthritis/#post-275036 Fri, 18 Jun 2021 15:16:54 -0400 Thanks for the links Celeste. And to Trent, arthralgia make me feel like an old lady. I only did prednisone once in the beginning but weaned off to see how I would do.  Its tolerable now and does not interfere with activities. I am hoping pain disappears after Pembrolizumab is stopped, but sounds like that varies person to person.

]]> ce412315b0686f5b7ea313cdeac67be5 ThinkingPositive's profile was updated https://forum.melanoma.org/activity/p/4848/ Thu, 17 Jun 2021 21:21:43 -0400 0 5fe668c08e8d32a3f6715b9a3b9e281b ThinkingPositive replied to the topic Week 2 after first ipi/nivo infusion. in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/week-2-after-first-ipi-nivo-infusion/#post-274976 Mon, 14 Jun 2021 11:20:08 -0400 Hi Christinad,

Great news that some symptoms resolved. I’m rooting for you that the combo does its job with minimal side effects.

Cindy K

]]>