- This topic is empty.
February 3, 2013 at 10:12 pm #20989
I’m an old observer but first time i’m writing here in this forum.
As you can see fro the topic thing are not so well although my melanoma is still small – thanks to the zel.
My doctor think that the best thing now is to go to the TIl trial. He think that the anti pd1 is still less promising than the Til and we will have opportunity to use it after more experience will be gathered in that treatment .
I’m considering accepting his offer.
Any other suggestions?
Moti.February 3, 2013 at 10:33 pm #58965Catherine PooleKeymaster
I don’t think the evidence is in yet on TIL, but it isn’t on PD1 either. TIL is a very time consuming, toxic treatment. There is a lot of hospitalization involved. I would research it carefully as to what it entails. Where would you do it?
PD1 on the other hand has few side effects that aren’t manageable at home and is showing about a 30% response rate, sometimes higher. I know these are difficult decisions to make because neither has abundent evidence of results. Hopefully others here will tell you their experience and you can speak further with your doctor.February 4, 2013 at 1:52 am #58966AnonymousGuest
Sorry to hear this. Can you be more specific as to why you believed you failed the zel + IPI? Do scans still show progression of your disease? It does take IPI a while (months in some cases) to work. What type of melanoma do you have?
Where do you live and which TIL program are you considering? Which PD1 trial are you considering? It’s nice to have choices now.
JeffFebruary 4, 2013 at 10:10 am #58967
I finished my 4 treatment of ipi in Mai 2012 and immediately started the zal due to the fact that my disease show no response and my tumor kept growing. The zal made a great job. It shrinked all of the rumors and even eliminated some of them. It kept a stabilization until 3 month ego when we noticed new small lymph node in the pet ct. We waited another 6 weeks to find out that now I have more lymph node involved. The good news is that the tumor shown by the ct are very small about 1.2 cm but the amount is growing. My doctors says that their experience is that when the zal stop working the melanoma can come back uncontrolled and from the other hand their experience with the TIl is that as much as the disease is small the chances to succeed are bigger. I live in Israel and the professor conducting the trial here has experience with 70 patient and 50% positive response.
They assume that because i’m considering as young person – age 42 and in good health and shape I will pass it.
From the past I know that my melanoma can grow up fast. Last year from zero finding in the ct to a tumor size 7 cm passed only 3 month.
They didn’t discuss much about the anti pd1 trial but I understood that it is a trial that compere the anti pd 1 with chemo probably Il 2.
Psychology it is difficult for me to enter this trial because the absurd situation. I’m having very good time. went back to ride my bicycle. Working my regular 12 houses a day, Just Filling great after the ipi and zal side effects had passed. It remained me the day I started the interferon treatment 3 years ago. Consciously let them get you in a situation that will make you fill bed and affect your quality of life just because a picture from a computerized device shows some black spots all over my body…February 4, 2013 at 12:33 pm #58968PatWParticipant
Motineta, your post reminded me of something. When my brother met with his oncologist at Moffitt a few weeks ago, the doctor said that they are no longer accepting patients into their anti-PD1 trial unless and until they have tried and failed ipi (Yervoy). I don’t know why this should be, but I hope you feel reassured that failing ipi is not a death sentence. It is quite possible that you would benefit from either TIL or from anti-PD1.February 4, 2013 at 8:39 pm #58969 Thanks for the encouragement. I’m fully aware of the new options and believe that one of then will do the work.
It is the basic rule in this war – be optimistic and never stop fightingFebruary 4, 2013 at 9:37 pm #58970AnonymousGuest
Personnaly, I’d be strongly in favor of the TIL if you can be accepted. Yes, it is a long, very toxic and somewhat risky procedure, however the response rates seem quite high. Also if you are concerned about your disease quickly turning aggressive, this may be an ideal time as you are young, at your strongest physically and with your disease at its weakest. You may well be an ideal candidate right now.
We were really trying to get my wife into the NCI TIL program here in the US. She was also an ideal candidate (55 years old and in exceptional physical condition with a low tumor count) but she was excluded at the last minute due to her breast cancer 12 years ago (still don’t understand that). At the time, our oncologist, who had sent a number of people to NCI TIL, was suggesting overall response rates of greater than 70% and complete responses in the 20-30% range based upon data he had access to. The NIC is very picky as to who they let in to maximize their resources, response rates and, of course, safety, so that 50% you were quoted seems about right to me. But I’m not the expert.
The NCI also combines the TIL with IL2 and, I believe, they may be trying it now in combination somehow with IPI or PD1 but I’m not sure of that. Best to ask your doctor.
I hope this helps.
JeffFebruary 5, 2013 at 12:49 am #58971burkstParticipant
This is my first time on this site. I just wanted to share the news my boyfriend and I received today. He was diagnosed with Stage 4 melanoma last year in May. At the time of diagnosis, the melanoma was located in his right lung, right adrenal gland and small intestine. By June 13th, the spread was unbelievable: lymph nodes in the neck, left lung, left adrenal, liver, right gluteous muscle, pelvis, right tib-fib, left humerus, right 9th rib; need I go further?
We sought non-traditional treatment against the oncologist recommendations. We were honestly skeptical ourselves in the beginning. There is a Doctor in Brentwood, TN., near Nashville who is treating many types of cancer with success, including Melanoma. Neoplas Innovations, Dr. Stephen Cantrell. Research the website at neoplas.org.
Today, we followed up with his physicians on the January 22nd pet ct, there is only one spot lighting up with FDG, the left intercondyler notch of his knee. We see both Dr. Cantrell and a well known Oncologist at Vanderbilt, Dr. Sosman. Both physicians believe the one unchanged spot may not be melanoma and are recommending a biopsy and surgical removal of that 1 cm spot which would leave him cancer free.
I just want the world to know about this therapy and that it really works. The traditional oncology world was against this treatment but we chose it because the quality of life sounded so much better than our alternatives. For the first 6 weeks of treatment, he was really sick and we were not sure it was going to work but as Dr. Cantrell had advised us in the beginning, he would get through that slump and his energy levels would return. They did and I am so thrilled we chose to take this route. There are far less doctor appointments than traditional treatments, no radiation treatments, etc.
God Bless and if you have questions, please don’t hesitate to ask.
TinaFebruary 5, 2013 at 12:13 pm #58972
Thanks for the info. Very helpfull.
Thanks for sharing the good news. I will look at it.
- The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.