https://forum.melanoma.org/user/ed-williams/activity/ Activity feed for ed williams. Mon, 06 Apr 2026 20:08:37 -0400 https://buddypress.org/?v= en-US 30 hourly 2 9d3aaef11a2b803762de9860877681de https://forum.melanoma.org/forums/topic/i-was-diagnosed-with-an-aggressive-invasive-melanoma-on-friday/#post-280705 Thu, 17 Jul 2025 00:44:40 -0400 Hi Sole, not sure why I decided to visit today, as things have been like a ghost town around here on MRF!!! It was a very sad time when we lost Bubbles, we used to write to each other a lot, both of us were dealing with new cancers that we both were going through. I had some fun with early prostate cancer in 2023, needed some ADT hormones and…Read more

]]> e7d372026b1038dafee874db7edd17a7 https://forum.melanoma.org/forums/topic/new-branding-and-logo-for-the-mrf/#post-280634 Tue, 08 Apr 2025 21:44:31 -0400 Miriam Kadosh, I think the verdict is in on how the new site has become not usable by the general public. Over the time period from this post being put up no one has posted. On the facebook stage 4 group that I joined as this site slowly died, there have been a few hundred new members in this same time period with several post’s per day asking…Read more

]]> d7a0aa2d19280c9944f1656878171b4e https://forum.melanoma.org/forums/topic/new-branding-and-logo-for-the-mrf/#post-280618 Fri, 07 Feb 2025 23:31:03 -0500 Miriam Kadosh, I joined back in 2013 the MRF forum which used to be active and current and great place to go for information. A few years back there was a similar rebrand/change that destroyed the forum. I have no idea if your new changes will bring it back to life, but if I could suggest being able to find the patient forum should be front and…Read more

]]> d0980dac8a4e2aa9abfc62caf709db80 https://forum.melanoma.org/forums/topic/i-was-diagnosed-with-an-aggressive-invasive-melanoma-on-friday/#post-280593 Fri, 10 Jan 2025 23:57:39 -0500 SJ, Celeste loved helping folks deal with melanoma and she made such a difference in so many lives here on the forum and with her BLOG. Glad you are doing well!!!

]]> c1bdd7e6307d9639af78810ace7947c2 https://forum.melanoma.org/forums/topic/septic-tank-issues/#post-280566 Thu, 26 Dec 2024 16:56:15 -0500 Brandy, targeted therapy are not chemotherapy, so concerns for septic tank fail is not necessary. That being said if you are worried have it pumped out every two years vs every three years.

]]> 789592679d4f1449ef60b437c024d09d https://forum.melanoma.org/forums/topic/calling-all-metastatic-cutaneous-melanoma-patients-and-survivors-2/#post-280558 Tue, 10 Dec 2024 01:27:09 -0500 There are three or four different groups that have the permission of Ashley Olsen to post interview or questionnaire offers. Some pay fees for doing the interview while other are looking for information. I would join the facebook group and speak with Ashley via direct message on facebook. She has a pharma background and is easy to work with. I am…Read more

]]> f30799d286fc840bc6d48211f99d0b58 https://forum.melanoma.org/forums/topic/calling-all-metastatic-cutaneous-melanoma-patients-and-survivors-2/#post-280549 Wed, 04 Dec 2024 16:46:47 -0500 Miriam, not many of the late stage patients hang around here since the site changed the “Forum” a few years back. I come around once in awhile for a visit. If Replimune wants some information about where they can get some more RP1 patients, then I would suggest they contact on Facebook “Melanoma stage 4 support group” administrator Ashley Olsen…Read more

]]> d47b95c9a1d668347ee616d272a05b8b https://forum.melanoma.org/forums/topic/lump-under-skin-removed-today-and-really-worried/#post-280542 Tue, 26 Nov 2024 22:47:55 -0500 Been dealing with stage 4 for the last decade and pretty active in melanoma facebook groups and used to be active here on MRF when it used to be an active busy site. Until the pathology report comes back there is no sense jumping the gun. I have had probably 3 similar removals and biopsy taken with two no problems and one which was above skin not…Read more

]]> 52906af702826284292879d04295f0e1 https://forum.melanoma.org/forums/topic/stage-4-facebook-group/ Mon, 28 Oct 2024 20:49:36 -0400 If you were able to find the Patient forum that is now buried deep on the MRF site, congratulations! Most stage 4 folk have moved on and can be found on Facebook “stage 4 melanoma support group” that has about 5000 members and is active daily with different questions and topics. You have to ask to join with a couple of questions. The site has been…Read more

]]> 8e55b17e3242fc56c74573aea4f3d928 https://forum.melanoma.org/forums/topic/get-ready-for-the-2025-pediatric-melanoma-family-retreat-2/#post-280507 Tue, 22 Oct 2024 19:56:43 -0400 Ryann, does anyone wonder that work at MRF, why no one or nearly no one posts here any longer?

]]> ba831b3fd94cd63a7d14a57d68ba1f5e https://forum.melanoma.org/forums/topic/lung-mets-2/#post-280487 Mon, 23 Sep 2024 20:13:02 -0400 If talking with your oncologist before to long, I would ask to get measurement now so if down the road there is growth you will have comparison numbers ready to go. I would also ask for shorter follow up period than 3 months, if you are stressed about this report.

]]> ae942b1b85c029ec1e09902c45263ede https://forum.melanoma.org/forums/topic/lung-mets-2/#post-280485 Sun, 22 Sep 2024 22:40:25 -0400 Ground glass opacity is classic after bad colds, covid-19 infection or pneumonia etc. When there is something new and not proven to be melanoma via a biopsy, then it is just something new and more than one explanation could explain the findings. Follow up with scans more frequently would be a good idea, if changing getting larger then a biopsy…Read more

]]> 187115a3e83c91c3d0832eb33c5112af https://forum.melanoma.org/forums/topic/calling-all-metastatic-cutaneous-melanoma-survivors-2/#post-280477 Wed, 18 Sep 2024 01:40:53 -0400 Miriam, this is what happens when an amazing forum is hidden from sight when this foundation made the new web page! I used to post daily, now I visit every couple of weeks. so sad that this forum was destroyed. I now spent time on a Facebook stage 4 group with thousands of members that has 10 new post most week days with dozens of new members…Read more

]]> f7a4e79d430358557d32a216ad806f8b https://forum.melanoma.org/forums/topic/leptomeningeal-metastases-in-melanoma/#post-280449 Sat, 31 Aug 2024 20:17:30 -0400 Roberto, if you go to 13:00 min mark of following video Dr. Glitza of MD Anderson speaks about brain mets and specific to your question, she gets into treatment options more around 20 min mark for Leptomeningeal. https://www.youtube.com/watch?v=4cBhvxvHWXk

]]> 368f59ca11dea31ee4ef9ca27dcea833 https://forum.melanoma.org/forums/topic/multiparter/#post-280443 Tue, 13 Aug 2024 20:17:27 -0400 Tkoss, last post you put up I suggested putting up full PET-ct scan report and CT- scan report so others with experience could help you out interpret the scan results. That is if you are interested in getting some clarity on your present situation.

]]> 829838d3288eb12ad5532074029a9134 https://forum.melanoma.org/forums/topic/stage-4-and-timing/#post-280424 Tue, 06 Aug 2024 01:43:46 -0400 Post the whole report, and many will be able to give you a helping hand. Usually if it does not give size of tumor then their is not tumor and with a PET-ct, they will give size of tumor plus SUV uptake. They will also say new spot or new growth when compared to old scans or change in size of previous biopsied tumor, either smaller or larger.…Read more

]]> 6e0700f7134eabec4f24b0e50723b812 https://forum.melanoma.org/forums/topic/stage-4-and-timing/#post-280413 Fri, 02 Aug 2024 04:20:31 -0400 JudiAU, he had Ipi+ nivo, and is now on single pd-1 drug, so treatment would not have been any different.

]]> 06989e7b2ffed18f4a00317b858f9e1d https://forum.melanoma.org/forums/topic/stage-4-and-timing/#post-280411 Thu, 01 Aug 2024 19:47:51 -0400 This is no clock in stage 4, you either respond to Ipi + nivo or you do not, scans and follow up are now part of life. If the immunotherapy did the trick then follow up ct scans 4 times a year would make sense. I would also ask for MRI of the brain at least twice a year to make sure there is no progression there. Stage 4 since 2013 and still…Read more

]]> 8dfc515de4af0a7db7075d8ed9f89372 https://forum.melanoma.org/forums/topic/stage-2c-treatment-advice/#post-280403 Mon, 29 Jul 2024 21:35:42 -0400 Your giving advice to a post from 2 years ago.

]]> 0511de9921c9d8f0c8a85291a1766cc5 https://forum.melanoma.org/forums/topic/seeking-advice-for-metastatic-melanoma-treatments/#post-280390 Wed, 24 Jul 2024 18:33:36 -0400 Brian, just followed a post in the stage 4 group about you having to wait to get into the group. Make sure that you answered the questions and gave information that is required. Matt Glunt asked the admin why you had not been added, and she replied they have to answer the questions. It is her way to keep out spammers as there are a lot of them lately.

]]> af0dce3a16e4ed36214e9457d6f58a34 https://forum.melanoma.org/forums/topic/seeking-advice-for-metastatic-melanoma-treatments/#post-280386 Tue, 23 Jul 2024 02:28:52 -0400 Brian, you are correct Opdualag is mix of Relatlimab plus Nivolumab (LAG-3 +Pd-1 drugs). the idea behind adding in IL-6 drug comes from some research going on with triplets and quadruple combinations with Ipi+nivo plus IL-6 drug and in other also adding in LAG-3. Things are moving forward and new stuff is on the horizon. The IL-6 is not standard…Read more

]]> 44b60d85c3960961b296d349d8ac4745 https://forum.melanoma.org/forums/topic/seeking-advice-for-metastatic-melanoma-treatments/#post-280376 Tue, 16 Jul 2024 22:57:07 -0400 Brian, you may find the following two video’s informative on the topic. MD Anderson is one of the leading centers in the US for treating melanoma and worth the effort to get 2nd opinion from Dr. Tawbi, or Dr. Davies or Dr. Glitza. Symptomatic brains mets and getting steroids taper down and things stable to be able to starting ipi+nivo (proven…Read more

]]> 2cade849cdca1e9d3fef2d4fea1ab698 https://forum.melanoma.org/forums/topic/cannabis-and-cancer-webinar/#post-280355 Tue, 09 Jul 2024 20:36:21 -0400 Debbie Churgai, just watched the ask the Expert webinar on youtube. Dr. Leah Sera was excellent on the topic of cannabis and I learned a lot. Not sure how it related to melanoma, as she could not answer any questions on the topic of melanoma as she is not an oncologist. Kind of missed a great chance to have someone with her who could have continue…Read more

]]> 5283b7a74bde9b10510131cc667f845d https://forum.melanoma.org/forums/topic/success-stories-with-only-one-dose-opdivo-yervoy/#post-280354 Tue, 09 Jul 2024 20:22:41 -0400 Jaclinfarr, if you go into discussion section of New England Journal of Medicine articles about original Ipi+nivo clinical trial called checkmate 067, you will see data on responses of patients who had to stop because of IRAE’s (side effects) and you will see that those patients did as well long term as those who got all 4 induction combination…Read more

]]> 5e8a74ea1d9c94b5196448e95ba6f6ab https://forum.melanoma.org/forums/topic/a-little-encouragement-from-a-7-year-stage-4-til-rad-chemo-immuno-survivor/#post-280131 Sun, 24 Mar 2024 16:58:38 -0400 Billy I am exhausted just reading that adventure, you have more than earned some time off from treatments. When are you writing the book version of this adventure, so many state 4 folk are looking for advice on TIL’s these days you should think of putting out a more detailed version of the process you went through!!!

]]> de77f6b4b547036451658b05155277ad https://forum.melanoma.org/forums/topic/sister-got-biopsy-results-waiting-for-next-stage-sister-extremely-anxious/#post-280010 Sun, 11 Feb 2024 18:20:02 -0500 K, here is link to MRF site for cutaneous melanoma staging. The process is sometimes hard to follow, but basics are if no melanoma found in nodes then based on depth it will be stage 2, if nodes are positive then there are 4 levels of being stage 3. 3a, 3b,3c,3D. Each stage level has specific definition based on pathology report and how things…Read more

]]> 1055692ee79d6b608fa6bbe20e236ab1 https://forum.melanoma.org/forums/topic/sister-got-biopsy-results-waiting-for-next-stage-sister-extremely-anxious/#post-280009 Sun, 11 Feb 2024 18:13:25 -0500 Hi K, until you get biopsy information no sense getting worried. If they want to take sentinel nodes then the depth of biopsy had to be enough to trigger further exploration. Aim at Melanoma and MRF (this site) both have very good information pages for staging that will explain the process of staging the biopsy and proper follow up depending on…Read more

]]> 787d6e04f9e973ade4545d6cd3366c81 https://forum.melanoma.org/forums/topic/happy-melanoma-awareness-month-from-the-mrf/#post-279971 Tue, 06 Feb 2024 20:22:14 -0500 Mike N, the new improved forum is just a mess when it comes to what post is shown. This post was from May of 2022, yet it is showing up to you years later. Not sure if Amy is still the voice of MRF!!!

]]> d5a3e42ee5ff057f7c849959f98e4c93 https://forum.melanoma.org/forums/topic/itchy-rash-any-recommendations/#post-279958 Tue, 06 Feb 2024 01:19:07 -0500 There might be some data out there from similar clinical trial that Dr. Weber led looking at flip dose of Ipi+nivo plus 24 weeks of Tocilizumab (IL-6 drug similar to Sarilumab) this trial was reported at ESMO with some results. There may be some more IRAE side effect data out there to help. The addition of LAG-3 drug is different and very unique,…Read more

]]> 160a2f50196b792fb1347225d36054ab https://forum.melanoma.org/forums/topic/jeff-w-sweeney-microbiome-reply/ Thu, 04 Jan 2024 20:44:50 -0500 Your previous post for some reason is blocked for inappropriate content, which is really funny as it is about poo!!! Any ways here are two links to recent Aim at Melanoma gut microbiome series. Host Melissa Wilson is speaking with Fecal Microbiome transplant expert from Univ of Pittsburgh Dr. Diwakar Davar.…Read more

]]> 5c457951bfdf5876d1035939cdb01425 https://forum.melanoma.org/forums/topic/immunotherapy-t-vec/#post-279452 Tue, 31 Oct 2023 00:27:58 -0400 MB, last video on the topic from ASCO 2022. https://ascopost.com/news/september-2022/addition-of-t-vec-to-pembrolizumab-in-advanced-melanoma/

]]> 4a79657f0c8050b1fd27e3cb857ac6c5 https://forum.melanoma.org/forums/topic/immunotherapy-t-vec/#post-279451 Tue, 31 Oct 2023 00:18:57 -0400 MB, this is another injectable called RP1 and is in clinical trial called IGNYTE. Dr. Pavlick from Cornell Medicine talks about how it works in following short video. https://www.onclive.com/view/dr-pavlick-on-the-mechanisms-of-action-of-rp1-in-cutaneous-melanoma

]]> bdfc8d687a64fb98e2eddcc5546e99b9 https://forum.melanoma.org/forums/topic/immunotherapy-t-vec/#post-279450 Tue, 31 Oct 2023 00:12:22 -0400 MB, this is Onclive peer panel doctor from Moffitt talking about how they use T-vec, May of 2023 video. https://www.onclive.com/view/tumor-directed-oncolytic-therapies-for-melanoma-and-cscc

]]> 4d7592cf04f3c46b710519fb9bf90cfd https://forum.melanoma.org/forums/topic/lymph-node-came-back-positive/#post-279376 Sun, 15 Oct 2023 22:59:35 -0400 Jeff, without BRAF status they will probably offer one year of either of the PD-1 drugs, Nivolumab (Opdivo) or pembrolizumab (Keytruda). The problem with adjuvant treatment is the risk of developing life long issue from the drugs are real and for endocrine toxicities they will be life long. It all becomes stats at this point, what % chance of…Read more

]]> 7d700685d2e0fa64a1b8c6210f9dc162 https://forum.melanoma.org/forums/topic/ipi-nivo-questions/#post-279370 Sun, 15 Oct 2023 00:07:56 -0400 Ed, following link features a leading expert in melanoma from Australia and she talks about the concept of neo-adjuvant treatment before surgery and the logic and immune response that can happen when tumor is present vs giving drug after surgery with no tumor present. Doctors can learn a lot by how the tumor tissue look under the microscope after…Read more

]]> ba7a43b3e4fe6b5fce0bc1875aadff9e https://forum.melanoma.org/forums/topic/lymph-node-came-back-positive/#post-279367 Sat, 14 Oct 2023 23:11:58 -0400 Jeff, staging is a process of gathering information. Depth of tumor, lymph nodes positive or negative. If positive you jump up to stage 3 and depending on some factors will settle into a letter following #3. I was 3a back in 2012 based on pathology and sentinel lymph node biopsy results. Not great options back then for treatment as there are now…Read more

]]> dd59a3bb003bba10347ef376a2fad2f2 https://forum.melanoma.org/forums/topic/melanoma-and-braf/#post-278959 Tue, 25 Jul 2023 21:52:04 -0400 Finem, SOX10 and MELAN A are part of immunohistochemistry test that look at tissue from surgery tissue/biopsy using stains added to slice of tissue and then look under the microscope to see if tissue is melanoma or not. Following article gets into the testing of tissue. BRAF mutation status of being positive or negative does not make difference in…Read more

]]> 5df9a6a16c1e775bfc1d18b36eab0476 https://forum.melanoma.org/forums/topic/recurrence-after-complete-response/#post-278905 Fri, 14 Jul 2023 22:43:48 -0400 Lucas the recent findings from treatment for a couple of rounds and then surgery vs going right to surgery then giving immunotherapy as adjuvant treatment has shown in recent trials to be superior (look up Opacin, Nadina, Prado and Donimi clinical trials). Third following link gets good at 37:00 min mark neoadjuvant. Then first following links…Read more

]]> 6b35ddf336c708ca492f0f2802568c38 https://forum.melanoma.org/forums/topic/recurrence-and-treatment/#post-278379 Mon, 13 Mar 2023 20:09:31 -0400 The numbers come from Checkmate 067, which started in 2014 and patients could not have had Ipilimumab prior which was approved in 2011 time frame. So (untreated) would mean news stage 4 and if you read checkmate 067 clinical trial it goes into more detail of who qualified. Today with adjuvant immunotherapy by the time they are stage 4 they have…Read more

]]> a5dd28a721599b78efd23515cdd9db14 https://forum.melanoma.org/forums/topic/happy-melanoma-awareness-month-from-the-mrf/#post-278321 Sat, 25 Feb 2023 22:42:06 -0500 What I should have written is “this topic has been reported for inappropriate topic!!!”

]]> 934727cce58ecacb2558199de4a5bce7 https://forum.melanoma.org/forums/topic/happy-melanoma-awareness-month-from-the-mrf/#post-278310 Fri, 24 Feb 2023 15:55:25 -0500 I am sorry but you can not comment on this post ladies!!! Melanoma humor!!!

]]> 78b169bc5c5bc6b715d5f865f198b17e https://forum.melanoma.org/forums/topic/looking-for-feedback-on-amputation-vs-skin-grafting/#post-278309 Fri, 24 Feb 2023 15:52:17 -0500 Did you even read the comments and the dates written??? A day late and a dollar short comes to mind!!!

]]> e7a4c0fc1466e9a77e47b290bb01a021 https://forum.melanoma.org/forums/topic/til-trial-for-brain-mets-fyi-and-qa/#post-278129 Fri, 20 Jan 2023 22:19:15 -0500 Jeff, I took this data off the Iovance company home page of the stats with IL-2 numbers and responses. https://www.iovance.com/uploads/Hassel_ESMO-IO_IL-2-analysis-presentation_FINAL-2444-publication.pdf

]]> ea97c7cb2f454402ec613c56e6519d33 https://forum.melanoma.org/forums/topic/til-trial-for-brain-mets-fyi-and-qa/#post-278128 Fri, 20 Jan 2023 22:02:10 -0500 Jeff, I hope thinks go smoothly and you get lot’s of T-cells ready for action!!! This following article was published by Iovance at the ESMO conference in the fall of 2022 and published in early December of 2022 on the topic of IL-2 doses and responses based on how much patients could handle and I thought it might be worth a read for you and maybe…Read more

]]> 359ebe9dce83e7df2f752a364d128460 https://forum.melanoma.org/forums/topic/immunotherapy-affected-liver-any-advise/#post-277578 Sat, 22 Oct 2022 15:04:31 -0400 leon, private button so no one can see what you wrote is one of the many reason many have left the sight. Way to hard to know how to post and where it is going let alone reading old posts to see what others have done in the past!!!

]]> c31d669afbab82ff74f402f502cfb451 https://forum.melanoma.org/forums/topic/immunotherapy-affected-liver-any-advise/#post-277553 Thu, 20 Oct 2022 18:57:42 -0400 HI Leon, the forum has been super quiet since they made changes and made it kind of hard to find. For stage 4 patients there is a really good facebook group see following link which is run by Ashley and has several hundred members of current and former patients and family members. You have to ask to join and it takes a couple of days to join but…Read more

]]> 6ded941ef53aeb4d516d486965248daa https://forum.melanoma.org/forums/topic/forum-activity-has-virtually-ceased-and-mrf-does-not-seem-to-care/#post-277378 Mon, 03 Oct 2022 14:07:14 -0400 Why do I find this “spam” landing on this specific thread about how MRF doesn’t care about how they destroyed the forum when they made changes and buried it where no one can find it!!!

]]> c6eeb6c08932c985159bbe48bc1f823c https://forum.melanoma.org/forums/topic/tumor-molecular-test/#post-277271 Thu, 22 Sep 2022 20:16:17 -0400 Standard of care would be to do BRAF testing to see if your tumor is BRAF+ (positive) as that can give you option if down the road the melanoma was to show up again. Pd-L1 test is a staining test of the tumor tissue looking to see % of Pd-L1 in the tumor tissue. It is not really used to guide treatment in melanoma but some hospitals still do the…Read more

]]> 58f86a748a4232e74ffb2b7c1d6ba897 https://forum.melanoma.org/forums/topic/tumor-molecular-test/#post-277261 Wed, 21 Sep 2022 12:44:10 -0400 Could I ask what specific genetic test you had done? If it is something like foundation one then the information will make no difference in how treatment should be picked as the information is helpful in knowing if you have any other targetable mutations that might respond to other type of cancer approved treatments. For example the foundation one…Read more

]]> eac3686429950e69b58eff4a77e2c4ed https://forum.melanoma.org/forums/topic/question-about-pathology-reports/#post-277213 Thu, 08 Sep 2022 13:49:21 -0400 Hi Azsocal, in the following video from one of the leaders in the field of neo-adjuvant melanoma research, Dr. Long covers her Australian based program in detail starting at 36:50 min mark. Earlier in the video she talks about use of immunohistochemistry ( staining of cancer cells and view with high powered microscope work)They also consider…Read more

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