MRF-Logo2019-Horizontal-RGB
Why isn’t combo treatment always offered?
REGISTER
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.

Why isn’t combo treatment always offered?

› Forums › Cutaneous Melanoma Community › Why isn’t combo treatment always offered?

  • Post
    • March 19, 2017 at 7:17 pm
    betsyl
    Participant

      Hi,

      I'm Betsy, wife of Tom, who was diagnosed this past January with subcutaneous stage IV, no known primary, BRAF negative.

      As far as the scans show, there are two subcutaneous masses, with no mets to organs.

      Tom has received his first infusion of Keytruda, with the second infusion happening tomorrow. Tom is under the care of Dr Sunil Reddy at Stanford.

      We plan to ask Dr Reddy this question, but I'm wondering if anyone here has insight into why monotherapies are offered in favor of combo therapies? I mean, why not attack the cancer with multiple immunotherapies? 

      If Keytruda helps the T-cells be more effective, why not AT THE SAME TIME also work to increase the number of T-cells in Tom's body?

      I don't get it.

      Thanks in advance for your thoughts on this. I've been lurking for a while, and I'm in awe of your strength and courage.

      Best wishes to all of you!

      Betsy

    Viewing 4 reply threads
    • Replies
        • March 19, 2017 at 7:29 pm
        jennunicorn
        Participant

          There is no combo treatment with Keytruda, so, I am guessing your question is, why wasn't he offered Ipi/Nivo (Yervoy/Opdivo) combo instead of Keytruda…

          It's a good question, might as well ask the doc why, but since he has already started Keytruda, I don't think it would change. Many patients have had great success with Keytruda, so at this point I wouldn't stress over not having a combo treatment, I'd wait and see how the Keytruda does.

          Some oncs are not so in favor of Ipi, since it has the higher rates of toxicity, and maybe depending on the patient's age and overall health prior to treatment, Ipi would be something a doc wouldn't feel comfortable giving to them. The reason you can't get Ipi with Keytruda is because they are made by different companies. Ipi and Nivo are both made by Bristol Myer Squibb, so it was easy for them to try out the combo of the two drugs that use different pathways and get them approved. Keytruda, made by Merck, uses the same pathway as Nivo (Opdivo), and even before the combo was a thing, many folks also had great success with Nivo alone.

          Wishing your husband all the best. I live very close to Stanford myself, so if you ever want to reach out for local support, I am more than happy. 

           

            • March 19, 2017 at 7:41 pm
            betsyl
            Participant

              Thanks for your response, Jenn. 

              Jimmy Carter got radiation with Keytruda. The radiation kills the tumor while at the same time inducing a T-Cell creation response. This is the type of combo I'm talking about–something that causes T-cells to be increased (not necessarily radiation, but something along those lines, like cryoablation, vaccine, etc.). 

              We already know why he wasn't offered Ipi. He has preexisting colitis, so they didn't want to risk Ipi.

              • March 19, 2017 at 8:13 pm
              jennunicorn
              Participant

                Jimmy Carter had brain mets, that's the most common type of met that gets radiation. Sometimes radiation is done for other mets, but can get tricky based on where the tumors are located. Vaccines are not done as regularly, not all docs are as into vaccines as others. But, definitely ask his onc about these things and let us know what he says.

                Ah, yes, he definitely would not be offered Ipi with that.

                • March 19, 2017 at 8:31 pm
                betsyl
                Participant

                  That makes sense. Thanks again!

                  One more question if you don't mind. How often are follow-up scans typically done? 

                  My understanding is that scanning shortly after the onset of Keytruda treatment can yield misleading results because the Keytruda can (hopefully) cause T-cells to swarm the tumors, making the tumors appear bigger than they actually are! 

                  So my **guess** is that scans will resume in a couple months, but we'll know for sure tomorrow after asking Dr. Reddy.

                  In the meantime, I'm wondering about your experience. Do you get scanned every three months or so…?

                  Tom is doing fairly ok on the Keytruda. He had some initial joint pain, but then it went away. He talks about difficulty breathing and fatigue and yet he has been doing a bunch of spring cleaning and went for a long bike ride yesterday. So how bad could it be? wink

                  • March 19, 2017 at 8:35 pm
                  jennunicorn
                  Participant

                    Sounds like he's doing great.. my joints have been killing me lately.. making physical activities pretty difficult. 

                    After starting Ipi/Nivo I had the first scan 3 weeks after my 4th dose and then a scan 6 weeks after that one. Now I will go to a scan every 3 months. It is true that you don't want to scan too soon, his onc will know when the typical timeline for first scan after treatment will be.

                    • March 19, 2017 at 8:38 pm
                    betsyl
                    Participant

                      I hope you feel better soon. My heart goes out to you!

                      • March 19, 2017 at 8:40 pm
                      jennunicorn
                      Participant

                        Thank you, wishing all the best for your husband!

                      • March 19, 2017 at 10:07 pm
                      maperny
                      Participant

                        Hi Betsy,

                        you have very good questions and I think that you should ask the Dr about everything you have researched.  There are so many new combo's and synergistic effects they are finding now with the combined treatments that  even compared to a year ago there may be a way to further enhance the treatment beyond the mono approach.

                        sounds like your husband is a fit man apart from this bug (long bike ride……) so if i were you I would throw everything you can at it.  Just my view of course.

                        I would also add that this forum really shows how important it is to self-advocate, with the ever-changing status of treatment options some Drs are more exposed to some than others (even the mel specialists).

                        Lots of luck to you both

                        Maria

                          • March 19, 2017 at 10:51 pm
                          betsyl
                          Participant

                            Thanks, Maria. It's a tough choice as to whether to become a self advocate or to just place all our trust into the care of the doc. It's comforting to think the docs have all the answers! But, as we know, that might not be true. 

                          • March 19, 2017 at 10:07 pm
                          maperny
                          Participant

                            Hi Betsy,

                            you have very good questions and I think that you should ask the Dr about everything you have researched.  There are so many new combo's and synergistic effects they are finding now with the combined treatments that  even compared to a year ago there may be a way to further enhance the treatment beyond the mono approach.

                            sounds like your husband is a fit man apart from this bug (long bike ride……) so if i were you I would throw everything you can at it.  Just my view of course.

                            I would also add that this forum really shows how important it is to self-advocate, with the ever-changing status of treatment options some Drs are more exposed to some than others (even the mel specialists).

                            Lots of luck to you both

                            Maria

                            • March 20, 2017 at 12:46 am
                            eric w
                            Participant
                              • March 20, 2017 at 2:57 pm
                              cancersnewnormal
                              Participant

                                Hi Betsy! Ipi/Nivo combo has statistically shown to have higher adverse side effects. Since your hubs isn't combatting internal organ metastasis, I'm guessing his docs are shooting for a drug with good response rates that isn't going to be "overkill" for what he is currently facing. Ipi/Nivo and even Keytruda as a solo agent, weren't on the table of my treatment choices (too many brain mets cropping up too often to get into trials). Eventually, Keytruda was FDA approved (I had already progressed on Ipi as a solo agent) and it worked quite well, with minimal side effects. I'm curious as to whether or not surgical resection has been discussed for his subQ's. I can think of a number of reasons why one would not go for that option (or why it may not be a viable choice), but I'm also one of those "Cut out as much as you can take out of me" people. That being said, I did opt to leave a small (under 2 cm) subQ lesion on my forearm before starting Keytruda. It was a way to gauge the efficacy of the drug on shrinking my tumors, prior to the next CT. It took some time to start showing signs of shrinkage… but did eventually "melt away"! Best wishes to you and your hubs! Hopefully that Keytruda will be all his body needs to kick that mela-crap to the curb, and have him rolling out the long bike miles for years to come!

                                  • March 20, 2017 at 5:03 pm
                                  betsyl
                                  Participant

                                    Hi Niki,

                                    Thanks for your response. I'm so glad you are having good results on Keytruda.

                                    We got confirmation this morning from Dr. Paul Chapman at Sloan Kettering that Dr. Reddy is doing the right thing based on Tom's situation. This takes a load off my mind.

                                    The size and location of the subcutaneous masses does not exactly make them unresectable, but large skin grafts would be needed. It would be quite an undertaking. So the decision was made to go straight to system treatment.

                                    Thanks again. 

                                    Betsy

                              Viewing 4 reply threads

                              Tagged: 

                              • 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.

                              Popular Topics