› Forums › General Melanoma Community › Time to Join ~ With Questions
- This topic has 5 replies, 3 voices, and was last updated 6 years, 10 months ago by
CindyJ.
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- June 23, 2017 at 3:03 am
Hi everyone on the board. I've been lurking for some time, but needed to join to ask a few questions.
My Mom, who is 79 moved to Stage 4 in March of this year. Some background; what she thought was a blister on her foot in August 2015 turned out to be an ulcerated, deep, high mitotic rate melanoma with surface spreading to toes. She had two surgeries to remove it all and had all the lymph nodes in her right groin and right iliac removed (7 of 16 positive). It was so hard on her. She also had bad lymphedema which has been resolved. No further treatment at the time because too far away for trials and her body and spirit were shot.
However, every three month scan (PET or CT) we did, while giving us a couple scares, were clean until December 2016 when a right iliac chain lymph node began growing. . A biopsy was done in March which came back positive. She was put on Keytruda on April 26th by our non specialist oncologist (but my mother loves him). We had our first scan today. It's only been eight weeks. Her node is bigger 4.4 x 3.6 cm (before it was 2.8 x 4.2 cm) SUV really high at 17, and now a new nodule (though their count is wrong as this new one makes what she always totals) in her lung at 2.5 x 1.2 cm SUV 5.3. She had one lung nodule biopsied before her journey began in 2015 and was ruled an alveolar hemorrhage. All other lung nodules has been consistent.
She has gene mutations for CCND1, PTEN and TERT. Our Dr. told us we could try the trial for Palbociclib (CCND1) or Everolimus/Temsirolimus (PTEN) if Pembro didn't work. We started Pembro before the testing was complete.
Question for anyone with knowledge. Is eight weeks too soon to rule Pembro out? Could her tumor has grown in the month before she started Pembro? Does anyone have advice on the lung situation? If she does a trial I'm assuming we'd have to move? I am SO sorry this is so long, it's just I'm so heartbroken. We thought we had it beat, then thought we had a miracle drug. Thanks for listening, and thanks to everyone who has educated me so well in this forum along the way. Much love. Cindy
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- June 23, 2017 at 3:34 am
Sorry for all that you and your mom are going through.
1. Yes, 8 weeks is too soon to judge a response to Keytruda/pembro. The average time to first response is 3 months. See the second slide in this post: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/dr-daud-reviews-asco-2016-immunology.html
,,,,and if you look at the next slide there are those who had no response until much later.
2. The ipi/nivo combo is FDA approved for Stage IV patients. No trial needed. It has a greater response rate than the anti-PD-1 products (Nivo/opdivo or Pembro/keytruda) when they are given alone…but higher rates of side effects mostly due to ipi.
3. There are trials in which pembro is being combined with ipi. I posted an ASCO report about it below on the forum. Many travel for trials…..though this can be difficult and expensive depending on your area and your needs. There are services and agencies that can help.
4. There are many other trial options….but the FDA approved options of either anti-PD-1 product or the ipi/nivo combo may serve your mom well.
I wish you both my best. Celeste
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- June 23, 2017 at 4:00 am
Thank you so much Celeste! You're so nice to help everyone! Guess with so many saying Pembro worked right away I got nervous. I'm going to print out the info you posted, as my biggest fear is our Oncologist seems eager to get her into a trial for maybe his own reasons. He said this PET would determine where we go, and that if she's worse we'd stop Pembro. I feel like I have the info now to keep her on it at least three more months, and with a low tumor burden and low LDH number I feel we can afford too. I worry about the Ipi with her age and side effects, so maybe the target trial if we need to go there. Thanks again!
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- June 23, 2017 at 12:47 pm
Hi Cindy – maybe I missed it in your message but is your mom BRAF +? If so, has her oncologist suggested Tafinlar/MEK?
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- June 23, 2017 at 10:07 pm
Hi Marta, thank you for the reply! No, her test showed only positive for the three I mentioned, two of which target therapy has been developed. I just worry about a trial because I know target doesn't work long term, but will if we need to. We may try radiation, but her one tumor is really close to her iliac vein. If I could go back I wouldn't have done this wait and see and plowed on. We were so hopeful we got it all. We had a great surgeon in Salt Lake and maybe should have moved there, she also does melanoma research.
We are going to the Queen/Adam Lambert concert tomorrow night in Vegas. She loves Adam. 😉 A 79 year old at a concert…gotta love her will to enjoy life.
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