› Forums › General Melanoma Community › I Have A Question!
- This topic has 13 replies, 9 voices, and was last updated 6 years, 7 months ago by
CindyJ.
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- September 24, 2018 at 1:01 am
Hi family, alotta you know Whats up with me currently (3 diff Immunol meds arnt working for me), my question is, is it safe to say that trying Chemo meds like Interferon, Interleukin, Proleukin and other types not a even worth trying? Is that like going backwards? Im gathering that those meds have very little success with our desease compared to the Pembro, Ipilimumab & Nivolumab that iv done already…just curious! Please share..thanx!
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- September 24, 2018 at 1:28 am
Hi Mike – I have been on his board for 20+ years but very Seldom post. I have had stage 4 melanoma since 1996 and have been on many treatments. The big immunotherapy drugs didn't work for me. I "failed" both Yervoy and Pembro. After that I did IL2 which also did not work but was worth a try because they say if it does work, it's a cure. I have now been on a chemo trial for 3+ years. The side effects are tolerable and I pretty much lead a normal ( whatever that is) life. My point is, don't rule anything out.
As as a side note, I always read your posts and appreciate how supportive and helpful you are to everyone. Best of luck with your choice of treatment. I have been in situations where I didn't think I could ever bounce back and yet I did!
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- September 24, 2018 at 2:45 pm
Good golly hot tamale! 20 years? I should say to you Thank You For Serving! Bless your heart, and thank you for coming out the woodwork, it is a bit “scary” for me “now”, i know its gettin to the Nitty Gritty & my next approach is second opinion time. The doctors at Kaiser Sunset is gunna be my first step, i will be calling here shortly, im just lettin them all get into work, drink some coffee & ill call to make an appointment..thanks again & i hope we can see you another 20+ years!..
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- September 24, 2018 at 1:56 am
Hi Mike, I hope the link works that i will give you at the bottom, it features Dr. oMid Hamid of the Angeles Clinic. Not sure if you have to sign up or if it will ask you to sign up to see it, since I am always signing up for new sights to find new shit. At the 25min mark it gets interesting, it gets into OX-40, Lag-3, NKTR-214, Tils with LN-144 trial as well as some other drugs that they are looking at. Home you find it helpful. Ed http://www.oncologytube.com/video/immunotherapy-in-melanoma-what-s-up-next/10003438?utm_source=hootsuite&utm_medium=socialmedia&utm_campaign=moasc-oncology-summit
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- September 24, 2018 at 2:48 am
Another possible approach if tumor is injectable!!!https://www.onclive.com/conference-coverage/aacr-2018/tlr9-agonist-may-reverse-resistance-to-pd1-inhibition-in-melanoma
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- September 24, 2018 at 2:52 am
This link features Dr. Jason Luke and gets into detail research ideas and is pretty technical but current. He is based out of Chicago and is one of the leading melanoma experts in the US.http://www.researchtopractice.com/ImmunotherapyInterviews118/Video?playlistIndex=0#t=0m0s
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- September 24, 2018 at 12:30 pm
Hi Mike – I think Ed has provided some interesting potential options. IL-2 is not used much anymore and if you're on it, has to be done in a facility that knows how to manage patients receiving this treatment. IT's a pretty rough tretment from what I have read and produces a complete response in 12-15% of people taking it. Talk to your onc and discuss fully including side effects, etc. DO the same for the other therapies and combos. Good luck, Mike!
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- September 24, 2018 at 2:26 pm
Mike,
You might consider continuing Opdivo immunotherapy and request a December PET/CT scan. Only one of your tumors grew. You might consider radiation to that tumor. You may be responding slowly to immunotherapy.
My tumor grew a little between April and September. I continue to receive Opdivo immunotherapy and will have a PET/CT scan around December to check on that tumor.
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- September 24, 2018 at 2:59 pm
Edwin, Sab & Ed W., you all are awesome & Thank You for writing & giving me a some Tools for my Tool Box! Im gunna pull up those Links/Videos on my computer (im on my phone usually) & research them. Edwin brought up a good point, if the other tumors are quote “stable” hello! Lets continue with Nivo & ZAP the Big sucker & move on! I will bring that up if it “isnt” during my 2nd opinion meeting…love ya guys…-
- September 24, 2018 at 4:41 pm
I was thinking the same thing. Stable would be a move in the right direction and maybe the opdivo needs a little more time. If you only have one that is still a problem then what would be the options to treat the stubborn one….. Radiation, BRAF….
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- September 24, 2018 at 5:18 pm
Dont know if this is worth looking, maybe has some additional information. Hope the link works.
Bill
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- September 24, 2018 at 6:36 pm
The Mayo Clinic and Sanford Roger Maris Cancer Center use PET scans to evaluate the effectiveness of melanoma treatments. Some other health systems save money by not doing PET scans. A PET scan with CT costs less than one 240 mg infusion of Opdivo and provides more information just a CT scan does. Since a PET scan does not show brain cancer, brain MRIs are also necessary.
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- September 30, 2018 at 3:50 am
Hi Mike,
Have any of your tumors been tested for the exact mutation? My mom, stage 4, did and found she has the mutation CCND1 and was put in the trial study called TAPUR (country wide). She is taking a breast cancer drug called Ibrance specifically for the mutation. It has worked. She is currently NED. I wish you all the best!
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