ed williams

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 questions about dealing with stage 4 melanoma. I do not think it is rocket science to realize the format is not working!!!

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 center of MRF. If you ask some one who has never seen the site to find the forum and it is difficult then the forum will not come back to life. I spend most of my time on “Melanoma stage 4 support group” on facebook which as a comparison of this site has over 5000 members, not all active but dozens of posts each week and new member sadly joining all the time. I had to go almost to the bottom of the new page site to find patient forum, how many people coming to the new site would go that far?

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.

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 for permission to put some stuff up. We have 5.2 thousand members at the current time and the site is very active. A few research groups are allowed to put up stuff once in awhile when looking for survey data but it must be first approved from Ashley.

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 below turning out to be a small basal cell carcinoma. Getting it out early is always good. All kinds of crazy shit grows under the skin, watch a few episodes of Pimple popper show and you will see they never know until report comes back. What were the comments by the person who removed the tissue? Usually requires a high powered microscope to know accurately what they are dealing with.

Ryann, does anyone wonder that work at MRF, why no one or nearly no one posts here any longer?

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 sadly each month.

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

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.

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!!!

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 sure working with Replimune she would approve you posting something to the group. You might find it interesting to see what a large group of melanoma patient helping each other looks like. This site in the past was very similar before the changes a few years back. Just click on following link and ask to join, you can add more so Ashley understands who you are. https://www.facebook.com/groups/just4melanoma4s/

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.

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 would make sense. How big are these ground glass opacity on ct scan?

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 there is no 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. Summary section usually spell things out based on opinion of person viewing scans.

JudiAU, he had Ipi+ nivo, and is now on single pd-1 drug, so treatment would not have been any different.