Melanoma Research Foundation | MelMel | Activity https://forum.melanoma.org/user/melmel/activity/ Activity feed for MelMel. Thu, 23 Apr 2026 16:44:47 -0400 https://buddypress.org/?v= en-US 30 hourly 2 4e7f08629da39d3d65630a041da0fbc3 MelMel replied to the topic The TIL process in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/the-til-process/#post-275535 Tue, 24 Aug 2021 06:21:42 -0400 Thank you so much for your detailed and superbly written experience with TIL. It is these kinds of personal recollections which I find invaluable. They are certainly worth their weight in gold!

Sending healing vibes and keeping fingers crossed for terrific scan results.

Melanie

 

 

]]> 883da61df647735e343b403577159317 MelMel replied to the topic now stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/now-stage-4/#post-275394 Sat, 24 Jul 2021 05:01:15 -0400 Patrisa and Cindy that is absoultely wonderful!

Ellen best wishes and may you have the same result!

]]> f34914f9289fe41106eeddbf1f5071a5 MelMel replied to the topic How long do Braftovi/Mektovi therapy can last? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-long-do-braftovi-mektovi-therapy-can-last/#post-275334 Mon, 12 Jul 2021 02:04:56 -0400 Jen,

I would try magnesium citrate which helps with constipation.

Melanie

]]> f02f8da34e0c02ac43c6754f46eb4efd MelMel replied to the topic Julie in SoCal in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/julie-in-socal-2/#post-275245 Thu, 01 Jul 2021 00:21:09 -0400 Thank you so much for finding out! Although the news saddens me beyond words, it reminds me that we are here only for a very short time. Julie was such a special person who touched the lives of so many. I will never forget her kind words and the beautiful pictures of her very last trip which she enjoyed enormously!!! I am so saddened but I pray…Read more

]]> f97f1501e2f9d7f6ccda087a9d253542 MelMel replied to the topic Arthritis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/arthritis/#post-275131 Fri, 25 Jun 2021 20:46:29 -0400 I had severe arthritis in all my joints but especially feet, ankles, hands, lower back and shoulders and neck. These were to the point where they wanted to give me pain meds but I refused. Instead we settled to go physio therapy which helped tremendously. I still have issues but nowhere close to the extent I had in the past when I thought I would…Read more

]]> 95b7ba1044669d9db73b6469cf970538 MelMel replied to the topic Julie in SoCal in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/julie-in-socal-2/#post-275130 Fri, 25 Jun 2021 20:35:15 -0400 Thank you so much for posting this because I was thinking about her for months and check here frequently to see if she would post anything. I was hoping that Celeste would have some news and I am so sad to hear that she does not.

Julie we miss you!

Melanie

]]> 35c6d52de41f15712a85a22de2c8bfda MelMel replied to the topic Ipi Nivo tips in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/ipi-nivo-tips/#post-275129 Fri, 25 Jun 2021 20:25:47 -0400 I am all for statistics however they only carry you so far and while they are the key when choosing treatment, they are not very helpful when you run into problems and need to deal with side effects and actually live through them. I had to deal with both and to my shock no one ever talks about how you feel during the time when you are off…Read more

]]> 6b5b854170c9881c193069bc5cde5c18 MelMel replied to the topic Am I the only one, who finds the new forum software/ layout very annoying ? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/am-i-the-only-one-who-finds-the-new-forum-software-layout-very-annoying/#post-275015 Wed, 16 Jun 2021 08:29:22 -0400 Christian, I completely agree with you. They basically decimated a very popular, informative and vibrant patient forum and reduced it to rubble. The old format was easy to use and worked just fine and required minimal changes. The new one is all techno based but with very little or no substance and I find that it is not made for actual patients…Read more

]]> 1635a3d02644cf435129a16b5d02f572 MelMel 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-274972 Mon, 14 Jun 2021 08:52:59 -0400 I am so extremely sorry for your loss. Your husband fought bravely however we never know what awaits us just around the corner. Still, try to keep the wonderful memories close to your heart and find solace in knowing that your support meant the world to him.

My thoughts and prayers are with you and your family.

Melanie

]]> e93322b71b327754918c48c96a23fb4d MelMel started the topic Common Antidepressant Medication May Activate Immune System to Shrink Tumors in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/common-antidepressant-medication-may-activate-immune-system-to-shrink-tumors/ Sun, 13 Jun 2021 05:30:08 -0400 UCLA researchers discover MAOIs could activate immune system to shrink various types of tumors.

A class of drug called monoamine oxidase inhibitors is commonly prescribed to treat depression; the medications work by boosting levels of serotonin, the brain’s “happiness hormone.”

A new study by UCLA researchers suggests that those drugs, commo…Read more

]]> 1fa09dd8f03aa2e335b9e4e93aa53a22 MelMel 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-274933 Wed, 09 Jun 2021 01:26:16 -0400 Thank you Ed.

I have a question to ask re PET scans. I have general knowledge but that is not good enough so here goes.

Mediastinal blood pool SUV avg is 2.2. Hepatic parenchyma SUV avg is 2.8.

Stable non-FDG avid 0.5 cm right middle lobe nodule.

Can you shed some light or point me in the right direction please? Thank you in advance.

Melanie

]]> a5b82fb62d03fdbf6786ef0805c3687f MelMel replied to the topic Stage IV confirmed - scared beyond believe in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/stage-iv-confirmed-scared-beyond-believe/#post-274851 Sun, 30 May 2021 01:32:19 -0400
  1. Ed, I found the research articles connecting pomegrante with specific gut bacteria Akkermansia municiphila which is not only responsible for better immunotherapy responses in melanoma patients but also has a protective effect on the gut and may prevent colitis which is a serious side effect of immunotherapy. I am not flooding anything you just…

Read more

]]> 827e08b413b0fc624f98dd9137d13e17 MelMel replied to the topic Seriously Confused Need some assistance and optimism in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/seriously-confused-need-some-assistance-and-optimism/#post-274850 Sun, 30 May 2021 01:12:00 -0400 I have read about cold and hot tumors and it also depends on the amount of mutations present in a melanoma tumor. Apparently, with low number of mutations the tumor is less likely to respond. As with anything cancer related, as cells rapidly divide, they may possess more mutations and on their own they can respond to therapy which they failed to…Read more

]]> 604e07a9df63ea4fc9af28b96bb380aa MelMel replied to the topic Stage IV confirmed - scared beyond believe in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/stage-iv-confirmed-scared-beyond-believe/#post-274837 Sat, 29 May 2021 09:25:16 -0400 Ed, you wanted studies and evidence. Take a look at Akkermansia muciniphila as it relates to success of immunotherapy especially in melanoma patients (link#1) and prevention and protection of unwanted side effects especially colitis, etc. (subsequent links). Information is the key and just because you are not informed on a particular subject and…Read more

]]> 70cf562160f2c5d00d7c3065d199a11f MelMel started the topic Brain Melanoma Metastases an interview with Dr. Glitza in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-melanoma-metastases-an-interview-with-dr-glitza/ Sat, 29 May 2021 08:07:55 -0400 I came across this video of an interview with Dr. Glitza, an MD Anderson melanoma oncologist. She specifically discusses melanoma brain metastases.

https://www.facebook.com/watch/?v=204775311361236

]]> 00ecf645663c16acac49adad490e9393 MelMel replied to the topic Seriously Confused Need some assistance and optimism in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/seriously-confused-need-some-assistance-and-optimism/#post-274835 Sat, 29 May 2021 07:43:09 -0400

Ed, you state that the hope is to turn a cold tumor into a hot one.

Of course I hope this therapy works but to have a tumor grow from 6 mm to 1.5 mm in a matter of weeks does not in any way signify a “cold tumor”. Sorry to burst your bubble as your reasoning is faulty.

]]> e391a3b929e85ba6f27480192a25ed6b MelMel replied to the topic Stage IV confirmed - scared beyond believe in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/stage-iv-confirmed-scared-beyond-believe/#post-274834 Sat, 29 May 2021 07:28:48 -0400 Ed with all due respect you are pathetic. Discrediting other people’s beliefs just because they do not align with your own is despicable. While I may not be able to find the exact article at this very moment there are plenty of others which prove my point. As I recall your gang ganged up on me about two years ago regarding this exact matter. To…Read more

]]> 1c242cef512831b97cd62fe88439177d MelMel replied to the topic Stage IV confirmed - scared beyond believe in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/stage-iv-confirmed-scared-beyond-believe/#post-274815 Fri, 28 May 2021 07:13:38 -0400 I can imagine but try to get control of the situation. You know what you are dealing with and you are tackling it the best way possible. For me, it took so long (2 months) to get diagnosed that once my diagnosis was confirmed, I was actually relieved. Now, I could concentrate on one cancer type instead of researching seven.

Personally, I think…Read more

]]> 449655b8c15334cf735055cda8b51cee MelMel 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-274814 Fri, 28 May 2021 06:18:44 -0400 I started Nov 2, 2018. Managed to have two combo infusions before my liver issues. Six months of steroids and organ rejection drug. Restarted Opdivo and I am currently on it.

]]> 7184d57afedc917a6d5e37143bca23f0 MelMel 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-274796 Wed, 26 May 2021 20:10:12 -0400 Most definitely! I was deathly ill for 5 months prior to my diagnosis. Severe nausea, migranes and I actually felt like I did not care about anything just was in a daze and could nap in and out of consciousness 24/7. I had no desire nor felt the need to eat nor drink. I was actually afraid to and due to severe nausea, it just took all the energy…Read more

]]> 117ecdcf87be05558473dddffea86e56 MelMel replied to the topic Lag-3 data starting to come in and combination of Lag-3+Nivo shows great PFS in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lag-3-data-starting-to-come-in-and-combination-of-lag-3nivo-shows-great-pfs/#post-274749 Sat, 22 May 2021 04:49:27 -0400 Hi Tim,

  1. Ipi is still number one when it works and has the best sustained response so I do not expect it to take a backward spot. Furthermore, LAG3 appears to work early on in the disease and there are many patients, myself included who became stage IV when first diagnosed. For us who have had the disease for some time, LAG3 may not work as…

Read more

]]> ff2b6f1c26601206458cb89ab2e90ef8 MelMel replied to the topic Lag-3 data starting to come in and combination of Lag-3+Nivo shows great PFS in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lag-3-data-starting-to-come-in-and-combination-of-lag-3nivo-shows-great-pfs/#post-274738 Fri, 21 May 2021 02:16:14 -0400 Great news since we have another combo immunotherapy in our arsenal. I think melanoma is like a stroke in a sense since the medical world has a saying,  “Different stroke for different folk” and same is with melanoma. As long as it saves lives and side effects are manageable we are good although this combo has twice the amount of side effects…Read more

]]> 852613794346e066b403e3b8388b75df MelMel replied to the topic put this one in the win column in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/put-this-one-in-the-win-column/#post-274714 Sat, 15 May 2021 23:47:04 -0400 Congratulations! It appears you just hit the jackpot. Enjoy every minute of it.

Optivo is Optivo regardless who administers it or where it is given. It will either work, or not or one falls in the inbetween stage.

May you continue to be NED for years to come!

Melanie

 

]]> 94128448a3c88340bdac4013adce1e31 MelMel 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-274713 Sat, 15 May 2021 22:59:36 -0400 Hi Tim,

I am so glad you have chosen a path and even though it looks challenging, it seems to be the correct one for you. Although I do not know anyone who has undergone this treatment, a friend has had her melanoma tumor harvested just in case she needed TIL treatment later on. If I remember correctly, she had to wait 3-4 weeks for the lab to…Read more

]]> a0dacdcf1bf0d1555d034f6d9dd1e49f MelMel replied to the topic Are we out of options? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/are-we-out-of-options/#post-274712 Sat, 15 May 2021 22:17:13 -0400 Dear Jenny,

I am so incredibly sorry for your sudden, unexpected and enormous loss. Life is incredibly unfair and all ever anyone has are just memories. Please find solace in the fact that you were privileged to know and share the mutual love and life since many never have that experience. Keep the precious memories alive and close to your…Read more

]]> 9094dd2456f0e8b1a039a1cca6514e00 MelMel replied to the topic best melanoma treatment centers and thoracic surgeons near south Alabama in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/best-melanoma-treatment-centers-and-thoracic-surgeons-near-south-alabama/#post-274596 Mon, 26 Apr 2021 02:57:57 -0400 Although I understand your concern, I think being on combo immunotherapy is relatively short time frame since it involves four infusions each spread four weeks apart. This is then usually followed by single drug immunotherapy every four weeks. The combo is a handful and many cannot complete all four infusions. I only managed two. Changing…Read more

]]> 727018c2d40918510f56ad354d1e4fc1 MelMel replied to the topic Are we out of options? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/are-we-out-of-options/#post-274587 Sat, 24 Apr 2021 01:44:54 -0400

Hi Jenny,

I have a friend who has battled melanoma and has had gamma knife for brain mets only to end up with multiple mets two weeks after. At this point, they put her on heavy chemotherapy consisting of  Cisplatin, Vinblastin and Dacarbozine. She was hospitalized for six months after which she was fine and has been NED for brain mets for over…

Read more

]]> 7ca1459f7501b2369b78be3da5f64e95 MelMel replied to the topic Dodging a bullet in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/dodging-a-bullet/#post-274477 Fri, 09 Apr 2021 03:29:08 -0400 Stephen, you are so lucky, unlike so many of us who end up with no known primary and stage IV. My daughter who just had a baby is going to have some suspicious moles removed within days. Initially, it was 3 then 4 and now a total of 5. I just cringe and my stomach is in knots since I just cannot help but think I would not wish this on my worst…Read more

]]> c5920632b904f20f1e40e0318481ea22 MelMel replied to the topic What do you say at work about your cancer? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/what-do-you-say-at-work-about-your-cancer/#post-274451 Sun, 04 Apr 2021 06:29:36 -0400 I am so sorry. I tried to scroll up and accidentaly hit the Grr. Now, I cannot erase it. 🙁

]]> 817d35463db6e6eb0dee181419ec105d MelMel replied to the topic Still NED????? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/still-ned-4/#post-274365 Sun, 14 Mar 2021 19:47:53 -0400 I understand how worrisome this may be however, there may be many different reasons for the base of your throat to feel constricted and swollen besides the one we are conditioned to think of first.

Personally, I had experienced constriction as well. My internist who did an endoscopy mentioned this and although he tried to ease it mechanically, he…Read more

]]> fb2201bf8ae4866154290ab2a43eadbe MelMel replied to the topic Update on Yesterdays Scans ( Finally some good news ) 80% Response in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-on-yesterdays-scans-finally-some-good-news-80-response/#post-274322 Sat, 06 Mar 2021 05:42:58 -0500 <p style=”text-align: left;”>I am so happy for you Trent! And I remember not too long ago, you were doubting yourself if you can do it?</p>
As for the arthritis and such, in time the aches and pains do get much better and we return to a “new normal”.

In the meantime, we shall keep our fingers crossed that the uptake is inflammation.

Melanie

]]> fd89372d8eafe4cf8435ba015f3154d5 MelMel replied to the topic Chances after recurrence? (10 mths Nivo) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/chances-after-recurrence-10-mths-nivo/#post-274321 Sat, 06 Mar 2021 05:29:10 -0500 1. Failing single drug immunotherapy does not mean that the combo will less likely work. A combo utilizes two different pathways, whereas  single drug immunotherapy does not. So if one is not 100% successful the other drug may finish the job the first one did not. Furthermore, the more drugs and treatments melanoma patients try, the more success…Read more

]]> 533878cb18fe2cc8ce3a9802c436ea0a MelMel 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-274228 Mon, 15 Feb 2021 05:32:06 -0500 My liver lesions decreased by 50% in two months following two combo infusions. Then another 30% decrease in the next two months while I was on huge doses of steroids. This is why I firmly believe that if I was able to get the third combo they would be completely gone. Instead, we are stagnant but stable. I cannot help but wonder what will happen next?

]]> b003331031cc5611a8efbd3d4260c49c MelMel 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-274181 Mon, 08 Feb 2021 03:32:25 -0500

After two combo infusions I developed drug induced liver injury. Five months later, I resumed on Nivo only. Initially, I was told that maybe a year later I could go back on combo if need be but that was not to be. I was totally bummed because I felt that three combos were optimal. In the time since, I have realized that I still had a great…

Read more

]]> 72520f491d2e1d861a7758995ab6420d MelMel replied to the topic 2 years NED in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/2-years-ned-2/#post-274180 Mon, 08 Feb 2021 03:19:24 -0500 So happy for you! Best wishes and continued NED status!

Melanie

]]> fd18dbdf090327c03c82503207e3abb1 MelMel started the topic Fecal transplants and response to treatment in melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/fecal-transplants-and-response-to-treatment-in-melanoma/ Mon, 08 Feb 2021 03:09:43 -0500

The effect of a drug, or impact of a treatment like chemotherapy, doesn’t just depend on your body. The success of a particular medicine also depends on the trillions of bacteria in your gut.

The 100 trillion bacteria that live within the human digestive tract – known as the human gut microbiome – help us extract nutrients from food, boost the…

Read more

]]> 463b73ea6517091617ae60ad8fe72e50 MelMel replied to the topic above my paygrade. but i thought it important in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/above-my-paygrade-but-i-thought-it-important/#post-274057 Wed, 27 Jan 2021 04:39:44 -0500

My understanding is that one still needs surgery to get rid of the tumor burden. Then 18 weeks after the vaccine. Out of eight patients, six patients had no evidence of disease four years after followup. Two patients had intially melanoma metastases to the lungs as well and were put on checkpoint inhibitor immunotherapy following the vaccine.…

Read more

]]> d2993e1b8b11c69ad88ad751916e74d1 MelMel replied to the topic above my paygrade. but i thought it important in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/above-my-paygrade-but-i-thought-it-important/#post-274056 Wed, 27 Jan 2021 03:49:50 -0500 Hello Ed,

Happy New Year! Thank you for your recent Ottawa study.

The NeoVax study has followed eight patients for a four year period and with excellent results. Excercising caution is one thing but witholding it from the seriously ill when it can perhaps save countless lives is ridiculous and unconscionable. Try that line with someone who is…Read more

]]> a0428ffbf11ceea6931869c1149ffd6a MelMel replied to the topic Personalized skin cancer vaccine demonstrates long-term effectiveness in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/personalized-skin-cancer-vaccine-demonstrates-long-term-effectiveness/#post-274055 Wed, 27 Jan 2021 03:29:27 -0500 I apologize since I did not see your post. Great minds think alike!
Hope you have a wonderful NEW YEAR.
Melanie

]]> 6ecc202407e7c38723ca2d5165618de8 MelMel started the topic Personal vaccine against melanoma from a Dana Farber study in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/personal-vaccine-against-melanoma-from-a-dana-farber-study/ Sun, 24 Jan 2021 19:09:01 -0500 Amazing news from a Dana Farber study!

 

https://www.dana-farber.org/newsroom/news-releases/2021/personalized-vaccine-produces-long-lasting-anti-tumor-response-in-patients-with-melanoma–study-shows/

<h2 id=”ctl00_ctl00_ContentPlaceHolder1_ContentPlaceHolder1_articleTitle”>Personalized vaccine produces long-lasting anti-tumor response in…Read more

]]> 16fa963b3d46656e25115086cb98118a MelMel replied to the topic Melanoma Mike in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/melanoma-mike-8/#post-273767 Tue, 29 Dec 2020 06:22:02 -0500 I saw the thread today and could not believe my eyes nor what I read! Although I have never met Mike, from the start I felt like I knew him for years. He was definitely one of a kind and this group will not be the same. He welcomed so many of us and his friendliness and good humor were contageous. We have all lost an incredible melanoma friend.…Read more

]]> f0c567c4d597db4b784a7013f6c750fb MelMel 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-273612 Sun, 20 Dec 2020 21:58:41 -0500 Great news! Best wishes and continued healing!

Melanie

]]>