MelMel

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

 

 

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 the physio therapy route which helped tremendously. I still have issues but nowhere close to the extent I had in the past when I thought I would actually be permanently disabled. So for me, my arthritic pain got better after about 12-15 months of severe issues. I do not know if this is normal nor how prevalent it is with the other melanoma patients?

Hope you find relief soon and please look into physiotherapy. I highly recommend it.

Melanie

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

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 immunotherapy and dealing with serious issues. Dealing with steroids is an entire different ball game and totally different can of worms and most people have very little experience with these. No one wants to tell you that if that should happen to you, that you will be for months on steroids and it will take months to taper off. The list of steroid side effects is as extensive and varied as that for Opdivo and Yervoy. I had to find all this out on my own and on my own skin and statistics did not help me when it came to dealing with serious side effects of drug induced liver injury after my second combo infusion. I felt relatively good until the steroid side effects started to kick in. Then, each few days I was dealing with a different crisis.

One thing to keep in mind is that everything in life is relative. I was stage IV and purely based on statistics, I chose the combo since it had the best outcome but highest chance of severe side effects. If I had to do it over again, I would chose the same. It just sucks that I fell into that small percentage group of severe liver toxicity when I was doing so well on the combo treatment. Now, instead of falling into the NED group, I am in the 84% group of everything in between.

There is actually very little you can do except believe in the treatment you have chosen and pray for the best outcome.

Hoping your combo treatment is successful and you join the complete responders group.

Melanie

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 but more geared to teenagers. Just finding it is a challenge and if they tried to hide it they could have not done a better job. As for being user friendly, it is a complete and dismal failure. Prehistoric posts mixed in with the current ones seem to be just the icing on the cake. Profiles were the key. Now, one has to repeat their history and this gets tiresome and annoying. The forum is extremely difficult to find, tags and emojis as well as the badges are not only totally unnecessary but are super irritating. As melanoma patients, we are here to learn crucial information and provide support to others dealing with the same disease.  This is not facebook or a common social chit-chat web site. If it is difficult to use on a lap top, it is even more so using a cell phone. The old version had many posts and patients had easy access to everything. The new version has far fewer posts and patient visits as well as the responses. It is like why bother to go through a maze each and every time?

Battling melanoma is difficult enough and using a scientifically based website to obtain and share crucial information should not be this challenging. I am extremely disappointed with the new format.

Melanie

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

Patrisa and Cindy that is absoultely wonderful!

Ellen best wishes and may you have the same result!

J,

I would try magnesium citrate which helps with constipation.

Melanie

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 that she is in a better place, looking over us. We miss you Julie!

Melanie

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

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 need to do a bit of reading. Unfortunately, the data I had provided is not in your favorite form of a video where you can go to a specific second and hear it. You will have to do a bit of reading which you obviously dislike. So please stop harping about things in the name of “science”. It is getting a bit old and you should do your homework. Also, this is a forum where patients can exchange information both scientific and personal. It is up to individual to see what they want to further research and believe in in the name of science and inform themselves in order to make the best decision in their treatment plan. If you believe that drinking Coke and rum on the day of the infusion is advantageous, by all means go for it. I speak of my personal path and the reasons I chose what I did because science has led me to this research. Once again, you are free to believe whatever you like. I am not here to change your mind in any way, shape or form.

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 respond initially.

Thank you for the links.

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 choose to ignore it does not mean that information is wrong or that it does not exist.

1. https://news.uchicago.edu/story/specific-microbes-digestive-tract-can-boost-success-cancer-immunotherapy

2. https://invivohealthcare.com/education/articles/blackcurrant-pomegranate-polyphenols/

3. https://www.researchgate.net/publication/311501913_Pomegranate_ellagitannins_stimulate_the_growth_of_Akkermansia_muciniphila_in_vivo

4. https://biomesight.com/blog/akkermansia-muciniphila

5. https://atlasbiomed-com.cdn.ampproject.org/v/s/atlasbiomed.com/blog/what-is-akkermansia/amp/?amp_js_v=a6&amp_gsa=1&usqp=mq331AQHKAFQArABIA%3D%3D#aoh=16222784199479&referrer=https%3A%2F%2Fwww.google.com&amp_tf=From%20%251%24s&ampshare=https%3A%2F%2Fatlasbiomed.com%2Fblog%2Fwhat-is-akkermansia%2F

 

 

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 each his own.

https://ascopost.com/issues/april-25-2020/gut-microbiota-emerging-as-key-player-in-response-to-immunotherapy/#:~:text=An%20analysis%20of%20fecal%20specimens,%2Dcell%E2%80%93inflamed%20tumor%20microenvironment.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7086073/

https://www.nature.com/articles/nrmicro.2018.12

https://today.oregonstate.edu/news/melanoma-patients-respond-immunotherapy-after-changes-gut-microbiome#:~:text=Melanoma%20patients%20respond%20to%20immunotherapy%20after%20changes%20to%20gut%20microbiome,-February%2014%2C%202021&text=CORVALLIS%2C%20Ore.,of%20providing%20long%2Dterm%20benefit.

 

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.