The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Oncologist says I am Stage III but have no lymph node involvement and wants me to be involved in trial

Forums General Melanoma Community Oncologist says I am Stage III but have no lymph node involvement and wants me to be involved in trial

  • Post
    kfogleman
    Participant

      In January 2017, I had extensive surgery to remove multiple tumors from the top of my head (deepest was ulcerated and < 4mm depth).  I also had a satellite/in transit metastases (N2c) on my left scalp (max thickness of 2.14 mm) removed at the same time.  Both of the sentinel lymph nodes were negative for metastatic melanoma and MRI and PET scans were also negative. My oncologist says I am Stage III, I assume because of the satellite/in transit melanomas on my left scalp even though the lymph nodes were clean.  She wants me to get involved in a randomized trial with either Keytruda or Interferon or Ipilimumab given (patient does not choose drug): Induction 20 million units/M2 IV for 5 consecutive days per week for 4 weeks, followed by maintenance dosing 10 10 million units/M2 SubQ 3 times weekly for 48 weeks. So far I have been able to find completed trials info on Interferon alpha 2B that show no increase in survival rates in the test groups vs "watch and wait" groups and < 1 year improvement in the relapse rate.  The side effects are quite severe and the participants seem to have a lower quality of life during the 13 months of treatment. The trial is not being offered at the hospital only 1 mile from my home.  I would have to travel 20 miles in the horrible SF Bay Area traffic mess to go to the hospital conducting the trial.  Does anyone have info on completed trials involving Keytruda or Ipilimumab?  I am strongly leaning towards the "watch and wait" protocol. 

    Viewing 5 reply threads
    • Replies
        Hukill
        Participant

          I would for sure do some type of treatment. I had a stage IIb on my head, pet scam was clean and a year later i am stage 4 with 7 mets in my lungs. My research I did told me that stage 2 or higher on the scalp has a 95% chance of spreading and it certianly did for me. If you can get into a trail I would do it. Yes, the side effects can be horrible or something you can deal with. I did the combo ipi/nivo and am going on 8 months of treatment and I still work 40 hours a week even though I have multiple side effects but I deal with them. I read on here where so many people are not sure if they want to risk the side effects to fight melanoma and I don't get it. I think any thing used to fight melanoma comes with side effects so either deal with side effects or die is how I see it. I drive 2 1/2 hours each way for treatment.

            kfogleman
            Participant

              My oncologist told me I have a 35% chance of reoccurrence.

            jennunicorn
            Participant

              Is your oncologist at UCSF? With what you've described, I personally would give the trial a try. Of course none of us would want to be put on the Interferon arm.. frustrating that they even do that anymore. 

              I live in Redwood City, not far from Stanford, but I drive up to UCSF ALL the time for infusions, scans (just got home from my PET/CT scan), appointments, etc. Absolutely love the melanoma center at UCSF and although I was hesitant about choosing UCSF over Stanford based on how close one was from the other, I am very happy I decided to ignore the travel anxiety thoughts. I have never sat in traffic for more than 5 minutes any time I have driven up there.. not sure what part of the Bay Area you'd be driving from but I would say it's not that bad if you can schedule things to land where you're not going to have to drive right at rush hour. So, I wouldn't stress too much about the travel. It would be very worth it if you got on Keytruda or Ipi and got a real chance at stopping the cancer from ever coming back. 

              But, having said all of that, it's really a personal decision and you should go with whatever choice you're the most comfortable with. We can all type out our reasons for or against things, but it really comes down to each individual and what our gut tells us to do. 

              If you ever want to reach out as one Bay Area melanoma patient to another, you should be able to email me through the profile on here, I'm always open to chat.

              All the best,

                kfogleman
                Participant

                  Live in Sunnyvale and have Kaiser.  Heard many great things about UCSF and my Kaiser oncologist checked with UCSF for trials but apparently did not find one.  Do you have a good contact at UCSF for me to check in with?  What is the protocol for you doing Ipi/Nivo?

                  jennunicorn
                  Participant
                    I had Kaiser too when first diagnosed. Luckily it was right at the same time to choose insurance for the new year, so I switched to a PPO so I could go to UCSF. I’m doing the combo because I had a recurrence in my groin back in September, previously I had been on Ipi as adjuvant treatment. So, instead of surgery, my oncologist calls me unresectable stage 3C which opened the door to all treatment options.

                    The number for the melanoma center at UCSF is 415-353-7022. I would get an appt with one of the oncs there and chat with them about what they think your options might be, and maybe they know about a trial that the Kaiser doc doesn’t. All the oncologists there are involved in the studies and research, so they know first hand what’s happening and also what is coming up. My doc there is Katy Tsai.

                  BillMFl
                  Participant

                    I can not tell what to do, but I will tell you what I would do if my two mm,s had been as significant as yours. I personally will never agree to Interferon or the other early treatments that rarely provided lasting results. I would definitely get in the best trial available or try for an off trial treatment with one of the newer tratments that have had really good results including total remissions such as with Jimmy Carter. You need to learn as much as you can quickly so you can make an informed decision. People on here will share really good info.

                      kfogleman
                      Participant

                        Yes, looking at all options and am trying to learn as much as possible.  Want to find trial that will hopefully have better results than what I have read about Interferon tials.

                        Mark_DC
                        Participant

                          Please double check as i thought the terms of the trial had changed so that if you dont get keytruda then you can choose between ipi or interferon: patient chooses. In which case definitely take the trial.

                          the other thing you can do is that if you cannot choose then if you are put on the interferon arm you can drop out, and fhen go for ipi as standard of care. I dont like recommending this, i dont feel it is "right" but also its not right to be forced to take interferon when ipi is available as a (better) option.

                          but i think the trial now allows you to choose between ipi and interferon, to overcome this design flaw.

                          ipi itself is problematic, i had side effects and did not get too far with it, but i would still be pro active rather than watch and wait. But just watch for side effects. Jenn seems really happy with ucsf so i would go for that too

                           

                          good ouck, mark

                          kfogleman
                          Participant

                            Trial is randomized where participant does not choose which drug is administered and may not know which one they are receiving.  

                            jennunicorn
                            Participant
                              Interferon is very different from the other drugs, so it would be obvious if you got that arm. And if so, you could quit the trial and then do Ipi as it is approved anyway.
                            Bubbles
                            Participant

                              The following reports may interest you…

                              Here are two reports involving interferon:

                              Interferon alone for stage II/III melanoma patients:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/02/for-stage-iiiii-melanoma-patients.html

                              Interferon with ipi for folks with unresectable melanoma:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/02/ipi-plus-peginterferon-45-rate-of-aes.html

                              Rerport on ipi for Stage III below….

                              Stlmag
                              Participant

                                The last information I researched did not give great outcomes for Yervoy or Keytruda – increasing life byt just a few months. My husband ( Stage IIIC metastatic amelanotic melanoma with lymph node involvement) opted out of all clinical trials and any more systemic treatment after 1 dose of Yervoy Dec 2015 with severe class 3 reaction. He has opted to have quality life. March 2017 marks 2 years since melanoma came into our lives. He has had 11 surgical procedures/skin graft, due to recurrance in the same spot..  The PET scan 2/3/17 was the worst result, yet. Today he recieved first injection of Imlygic into tumor….still declinig systemic meds. Researching melanoma activity seems to be that melanoma seems to go into overdrive at about 24 months. Holding hope for Imylgic injections to shrink the tumor.

                                  jennunicorn
                                  Participant

                                    Can you share the research you found saying Yervoy only "increases life by a few months?". Keytruda is not approved in the adjuvant setting, so there is no data about Keytruda for stage 3 out there, it's still in trial. And the data they have for stage 4 folks is really good.. certainly giving folks much much more than a few months. Adjuvant treatment, treatment for stage 3, means the person has no evidence of cancer after surgery and they go on treatment, like Yervoy, to prevent the recurrence of cancer. So, there's no one on adjuvant treatment that is dying, which makes me a bit confused about what you mean by "increasing life by just a few months"? 

                                    Bubbles
                                    Participant

                                      Hi anon,

                                      You are exactly right.  Stage III melanoma data is not measured in death…but rather in terms of treatment relative to recurrence.  Here is a report that demonstrates that ipi as adjuvant for Stage III provided:  "At a median follow-up of 5.3 years, the 5-year rate of recurrence-free survival was 40.8% in the ipilimumab group…vs 30.3% when treated with placebo".

                                      Here's the post:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

                                      Given it's results in other studies…we can only assume that anti-PD1 (whether nivo or prembro) would serve Stage III folks even better.  Yours, celeste

                                      jogo
                                      Participant

                                        Randomized means you don't choose the treatment, but you do know which group you are in.  Carefully read the protocol you would have to sign before you choose to join the trial. It lists all the possible side effects. That might help your decision.  You can always withdraw from the trial at any time you choose. Good Luck!

                                      MmP15
                                      Participant
                                        I would try narrowing in prospective risk of relapse, using prognostic tests such as MelaGenix or DecisionDx, then decide to go for adjuvant trial or not.
                                    Viewing 5 reply threads
                                    • You must be logged in to reply to this topic.
                                    About the MRF Patient Forum

                                    The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.