Melanoma Research Foundation | Edwin | Activity https://forum.melanoma.org/user/edwin/activity/ Activity feed for Edwin. Wed, 22 Apr 2026 18:26:48 -0400 https://buddypress.org/?v= en-US 30 hourly 2 ab2c46cadd3fcf8bf74736722dbd8575 Edwin replied to the topic Bone Strengthening Agents following Immunotherapy Stage 4? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/bone-strengthening-agents-following-immunotherapy-stage-4/#post-280592 Thu, 09 Jan 2025 16:26:40 -0500 I received radiation to a rib in September 2015. This made my rib pain less, but melanoma spread to many more bones. After melanoma disappeared from my bones, I received radiation to cancer in a lymph node in May 2018. Bone pain and lack of energy caused me to exercise less. I had bone pain for about 1 year. I took Oxycodone, when pain was most…Read more

]]> 833e275b059f275ee8e50bfb9b8f8b73 Edwin replied to the topic Bone Strengthening Agents following Immunotherapy Stage 4? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/bone-strengthening-agents-following-immunotherapy-stage-4/#post-280589 Thu, 09 Jan 2025 14:20:58 -0500 Zometa did not interfere with my running. Opdivo and Yervoy immunotherapy did. In 2016 I didn’t run from April through August. I was able to bicycle some in June, July and August 2016.

]]> 3f962bb8adff7c0e92b1bb2ea965b6b7 Edwin replied to the topic Bone Strengthening Agents following Immunotherapy Stage 4? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/bone-strengthening-agents-following-immunotherapy-stage-4/#post-280586 Thu, 09 Jan 2025 01:14:13 -0500 As far as I know my bone mass index was never measured.

]]> 3f9bd84e101bc3ccf904468b9b6820dd Edwin replied to the topic Bone Strengthening Agents following Immunotherapy Stage 4? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/bone-strengthening-agents-following-immunotherapy-stage-4/#post-280584 Thu, 09 Jan 2025 01:03:17 -0500 When I no longer received Zometa, I didn’t notice any problem. Dr Gaba did not tell me why she chose Zometa. Healing of my bones could be due to immunotherapy or to Zometa. Perhaps it was due to the combination.

]]> 97faca74adba21d313841ab453614dae Edwin replied to the topic Bone Strengthening Agents following Immunotherapy Stage 4? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/bone-strengthening-agents-following-immunotherapy-stage-4/#post-280582 Wed, 08 Jan 2025 23:47:53 -0500 From April 2016 to December 2016 I received Zometa once a month. From December 2016 to October 2018 I received Zometa every 3 months. I could not have dental work too close to a Zometa infusion. I do not recall my oncologist telling me that we might have to restart Zometa. I have never broken a bone. I am 81 years old now. Dr Gaba has been…Read more

]]> 189535194a736b92cc7cd4a5d1d0c4e2 Edwin replied to the topic Bone Strengthening Agents following Immunotherapy Stage 4? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/bone-strengthening-agents-following-immunotherapy-stage-4/#post-280580 Wed, 08 Jan 2025 21:59:40 -0500 In March 2016 a PET scan showed melanoma in many of my bones. I received opdivo and yervoy 3 or 4 times then opdivo for 4 years. My melanoma seems to be gone. I received Zoledroic to strengthen my bones.
“Zoledronic acid initiated 4/2016.After DEc 2016, frequency decreased to q 3 months. On hold since 10/2018.” I did not notice any side…Read more

]]> 7211c664192f5dd994b929fbb0a2027b Edwin replied to the topic Success stories with only one dose opdivo/yervoy? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/success-stories-with-only-one-dose-opdivo-yervoy/#post-280319 Tue, 18 Jun 2024 13:16:17 -0400 After my first infusion of Opdivo and Yervoy in 2016 for melanoma in several bones, I was very ill with very bad diarrhea and lost too much weight. I was given Opdivo only while I recovered. I received my 2nd infusion of Opdivo and Yervoy 9 weeks after my first. For my 2nd, 3rd and 4th infusion of Opdivo and Yervoy my dose of Yervoy was cut…Read more

]]> 28adda8888d5303ed51dd08c828b2e33 Edwin replied to the topic Cognitive decline in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/cognitive-decline/#post-280311 Sat, 15 Jun 2024 23:02:43 -0400 After my first opdivo and yervoy immunotherapy for stage 4 melanoma 8 years ago, I could not concentrate enough to read. After a month or two, I could read again. There was melanoma in several of my bones, but none in my brain.

]]> 9f2d7e17f5fe603e216bf9dfdf1b7e95 Edwin replied to the topic 9th Recurrence in almost 15 yearsSame Leg in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/9th-recurrence-in-almost-15-yearssame-leg/#post-279697 Thu, 21 Dec 2023 00:35:01 -0500 Does anyone know how private replies are supposed to work on this forum? Who should be able to see a private reply?

]]> 7be652f81851e51091a83cb226270f4e Edwin replied to the topic 9th Recurrence in almost 15 yearsSame Leg in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/9th-recurrence-in-almost-15-yearssame-leg/#post-279690 Wed, 20 Dec 2023 01:09:04 -0500 I received immunotherapy for melanoma in several bones. After cancer disappeared from my bones, a PET scan showed cancer in a lymph node. My oncologist sent me to talk with a surgeon, who said that surgery would not help. I was still receiving opdivo immunotherapy. I received radiation to that lymph node. This combination of radiation…Read more

]]> 792815f987f05de744a648c930a6c24e Edwin replied to the topic opdivo and yervoy side effects in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/opdivo-and-yervoy-side-effects/#post-279466 Sun, 05 Nov 2023 00:21:40 -0400 After my first infusion of opdivo and yervoy in 2016, I had very bad diarrhea and lost 11 lbs. 9 weeks later I had regained most of the lost weight and received my 2nd dose of opdivo and yervoy. My doctor reduced the dose of yervoy by 50%. I had much less side effects with my 2nd and 3rd opdivo and yervoy infusions.

]]> c1ca122297f82d84911dc198ef63be46 Edwin replied to the topic New.. Trying to understand in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-trying-to-understand/#post-279191 Tue, 12 Sep 2023 00:58:00 -0400 In 2015 my oncologist told me that chemotherapy does not work for melanoma, but immunotherapy sometimes works. I had bone cancer ( melanoma in my bones ).

]]> 9193947d7964d4d36c2f1c88571453c0 Edwin replied to the topic Large ALM on heel sole, left untreated for long in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/large-alm-on-heel-sole-left-untreated-for-long/#post-279013 Tue, 08 Aug 2023 00:21:17 -0400 My aunt Ruth had melanoma on a toe. At that time surgery was the only effective treatment for melanoma. Today we have immunotherapy.

]]> 9aa71c1c4ea6f88a7c48e0bcd9094ff4 Edwin replied to the topic Recurrence after complete response in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurrence-after-complete-response/#post-278907 Sat, 15 Jul 2023 12:42:53 -0400 I had melanoma in several bones. After ipi/nivo immunotherapy followed by nivo alone, my bone cancer disappeared. Then cancer was found in a lymph node under my left jaw. My doctors decided that surgery would probably not help. I had radiation to that lymph node and continued nivo immunotherapy. Now PET scans show no evidence of melanoma.

]]> f6ac83c8228aa6f7aa095655750c4cfa Edwin replied to the topic 7 years since diagnosis and doing great! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/7-years-since-diagnosis-and-doing-great/#post-278631 Fri, 12 May 2023 23:28:09 -0400 I received my 18th PET scan on May 8, 2023. I get a PET scan once a year now and see my oncologist every 6 months. She has been my oncologist since September 2014. I was diagnosed with stage 4 melanoma in August 2015. I received immunotherapy and radiation.

]]> 5317b368a81e268ec27302c798dd2a68 Edwin replied to the topic recurrence and treatment in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/recurrence-and-treatment/#post-278370 Thu, 09 Mar 2023 19:09:23 -0500 “58% SR after vervoy + opvido regime after 5 years.” Years ago I saw a similar 5 year SR with Vervoy and opvido as the initial treatment for people with stage 4 melanoma. People with stage 3 should do better.

]]> 0dbd12a1d3b9b531bf0697bdeb0ca39b Edwin replied to the topic Diagnosed with Type 2 Uveal Melanoma in Right Eye in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/diagnosed-with-type-2-uveal-melanoma-in-right-eye/#post-278236 Sat, 11 Feb 2023 22:10:22 -0500 I hope your melanoma never comes back. I had skin melanoma in several bones and received several PET scans and one brain MRI. I received immunotherapy and my melanoma is gone. I now have a PET scan yearly. You might ask about a brain MRI, PET scans and immunotherapy.

]]> a2d7007319151b1c48bc50cdd4228349 Edwin replied to the topic Zometa or Denosumab in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/zometa-or-denosumab/#post-276454 Fri, 11 Mar 2022 05:47:52 -0500 I received Zometa for perhaps 2 years while receiving immunotherapy for stage 4 melanoma. I did not ask for it. My oncologist chose it. I did not notice any problem with it. My oncologist stopped giving Zometa to me, when my bones healed and she decided its risks exceeded its benefits.

]]> 6e4abda8d08fc02d7fe542d173d47079 Edwin replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276350 Sat, 12 Feb 2022 00:15:13 -0500 I was NED 3 years after my 1st treatment and 2 1/2 years after beginning ipi/nivo immunotherapy. My 1st PET scan after completing 4 ipi/nivo infusions showed great improvement. Subsequent PET scans showed bone mets becoming less and less active. The melanoma met under my jaw became more active until treated by radiation.

]]> 3d9b1360cffec4cb4da44c1af5fd47a6 Edwin replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276347 Fri, 11 Feb 2022 18:48:03 -0500 I was not in a clinical trial. The FDA approved ipi/nivo immunotherapy as treatment for stage 4 melanoma a few months before I began this treatment.

In 2016 immunotherapy drug makers recommended continuing immunotherapy for stage 4 melanoma until disease progression or unacceptable side effects. My oncologist following the advice of Dr Weber…Read more

]]> 7ec6c9beac610b87a43d978087a5cf78 Edwin replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276342 Fri, 11 Feb 2022 13:37:47 -0500 My 4th and last infusion of ipi/nivo was in July 2016. I received infusions of nivo from August 2016 until May 2020. I was tired for a couple days after an infusion of nivo. My 1st infusion of ipi/nivo gave me very bad diarrhea. I lost too much weight and had to wait 9 weeks for my 2nd infusion of ipi/nivo. I returned to work part time…Read more

]]> 1eb82d3bf3c8340dc1edd57dc294a5d5 Edwin replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276339 Fri, 11 Feb 2022 01:26:40 -0500 I have been NED for over 2 years.

]]> 035ccdef979394c155c2d5803fd5ea5f Edwin replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276336 Fri, 11 Feb 2022 00:41:53 -0500 You had mets in your rib cage and have pain in your pelvic bones and right shoulder. My March 2016 PET scan showed melanoma in my right shoulder, some ribs, some vertebrae, pelvis and both femurs. My cancer was too widespread to consider palliative radiation. For you a CAT scan might help determine whether to do palliative radiation and where…Read more

]]> 61dba40faf793515f4ddff0695811e54 Edwin replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276335 Thu, 10 Feb 2022 23:48:42 -0500 In September 2015 I had radiation to a rib with melanoma. At the time that rib was my only bone with evidence of cancer. I had less pain in that rib after the radiation. However, melanoma spread to several more of my bones by March 2016.

]]> 94124f50d59e8fe804bd8221af47f3cb Edwin replied to the topic Simple question or not in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/simple-question-or-not/#post-276331 Thu, 10 Feb 2022 20:13:15 -0500 In your place I would consider completing all 4 ipi/nivo immunotherapy infusions, whatever the CAT scan shows.

I also had melanoma in my bones. I had significant pain for several months. I began Keytruda immunotherapy in November 2015. Walking became very painful in February 2016. A March 2016 PET scan showed that Keytruda treatments had…Read more

]]> db044a666deb0ec117bbd97c7e16e87a Edwin replied to the topic New to this. Stage 4 Metastasis to the lung in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-to-this-stage-4-metastasis-to-the-lung/#post-276289 Sun, 06 Feb 2022 18:55:05 -0500 I cracked 2 ribs in 2 separate falls. One cracked rib was in the front of my chest and the other one was on the right side of my chest. I had pain in a rib in my back due to melanoma in that rib. The cracked ribs made breathing painful. I felt pain in the rib with cancer, when I reached down to my bicycle down tube sift levers.

I don’t k…Read more

]]> eaa9e7230abcbb4e7f3cd8a3201d0e72 Edwin replied to the topic Imaging question ? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/imaging-question/#post-276284 Fri, 04 Feb 2022 21:55:43 -0500 I was scheduled for a PET scan in August 2021. Because I was exposed to a person who tested positive for covid, my PET scan was postponed for 2 weeks. It showed that I was still NED.

I now normally have PET scans every 6 months. I would have had a PET scan in early March, but I will be traveling in March and April. So, my next PET scan will be in…Read more

]]> 3e0cc86260bc80dee2fbd715ca6aa888 Edwin replied to the topic So anxious over imminent scans and immunotherapy failure !! in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/so-anxious-over-imminent-scans-and-immunotherapy-failure/#post-276185 Wed, 05 Jan 2022 21:58:04 -0500 I received Keytruda immunotherapy from November 2015 to February 2016. In that February walking became very painful. A March PET scan showed melanoma in several of my bones. I was switched from Keytruda to ipi/nivo immunotherapy followed by nivo alone. My bone cancer disappeared.

So, another treatment can sometimes work, if Keytruda…Read more

]]> 09de745347fb4224195c6a1b10e822b5 Edwin replied to the topic Any suggestions for weight loss and fatigue in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/any-suggestions-for-weight-loss-and-fatigue/#post-275560 Sat, 28 Aug 2021 11:52:29 -0400 I had nausea and diarrhea.

]]> 395e33958f9a599a51e48d4c55efce7b Edwin replied to the topic Any suggestions for weight loss and fatigue in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/any-suggestions-for-weight-loss-and-fatigue/#post-275558 Fri, 27 Aug 2021 23:59:48 -0400 After my 1st ipi/nivo infusion I lost too much weight. I met with my cancer center dietitian. I ate more calorie dense food. I switched from skim milk to whole milk. I ate as much ice cream as I liked. I ate more often. After 9 weeks I had regained enough weight to receive my 2nd ipi/nivo infusion.

]]> 18b7e8800423db51c08c046f26b97bdb Edwin replied to the topic Immunotherapy post colitis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/immunotherapy-post-colitis/#post-274483 Fri, 09 Apr 2021 17:41:46 -0400 In 2016 I had melanoma in many bones and had very bad diarrhea soon after my 1st ipi/nivo infusion. I needed to wear an adult diaper at night and when I was more than 3 minutes from a toilet. I lost too much weight and had to wait 9 weeks between my 1st and 2nd ipi/nivo infusion. I received nivo alone twice between my 1st and 2nd ipi/nivo…Read more

]]> ee73d8f04d3e4894641d87ba9208c797 Edwin replied to the topic What to expect during annual skin check? in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/what-to-expect-during-annual-skin-check/#post-274157 Sun, 07 Feb 2021 00:46:28 -0500 Because I had stage 4 melanoma, I see a PA-C dermatologist every 6 months. She is thorough and I trust her. On January 20 she biopsied a sore on my nose that might have been basal cell carcinoma. It was and an MD dermatologist will do MOHS surgery on my nose Tuesday.

]]> a3a00e0d2a04d3291e653bb4a9b86211 Edwin replied to the topic How long can one feasibly wait before restarting ipi/nivo? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-long-can-one-feasibly-wait-before-restarting-ipi-nivo/#post-274154 Sun, 07 Feb 2021 00:12:57 -0500 My second ipi/nivo infusion was 9 weeks after my first. Shortly after my first ipi/nivo treatment I had very bad diarrhea and lost too much weight. I was given steroids and two infusions of nivo only between my 1st and 2nd ipi/nivo infusions. I received all 4 ipi/nivo infusions.

]]> 6ad6e8e7b8f30dafa04d2aa5e7b05ad2 Edwin replied to the topic MRF Contact and Information in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mrf-contact-and-information/#post-273971 Wed, 20 Jan 2021 17:54:38 -0500 tWhen I repy . I do not see what I type.tttttttttttttttttttt

]]> 31197e3b88ad3af9dd8816da39ae88c1 Edwin replied to the topic Exercise and PET scan in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/exercise-and-pet-scan/#post-273812 Sat, 02 Jan 2021 22:06:55 -0500 Can you social distance on the visitor shuttle?   I walked 10 to 12 minutes to my cancer center for my PET scans in North Dakota winters.    I wore warm clothes.  My cancer center recommended eating a high protein, low carbohydrate meal the evening before my PET scans.  I avoided strenuous exercise for 36 hours before a PET scan;  I did walk to work.

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