MRF-Logo2019-Horizontal-RGB
Opdivo vs. targeted therapy
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.

Opdivo vs. targeted therapy

› Forums › General Melanoma Community › Opdivo vs. targeted therapy

  • Post
    • June 27, 2018 at 8:04 pm
    KellyH
    Participant

      Hi everyone!!! A little background info…my son is 17 years old diagnosed Stage 3A…he started Opdivo infusions in May. We are 3 treatments in. He is doing great so far…no real side effects. He has complained of a little lightheadedness but he was all congested and Benadryl seemed to help so I’m not attributing that to the Opdivo..he has had a few stomach aches but again he’s 17 and eats like a 17 year old so that’s hard to count as a side effect as well…since he was diagnosed I have become an avid reader about everything and anything melanoma. We have an amazing group of doctors caring for my son here at home and we traveled to Boston for a consult as well. 

      As of yesterday we learned that my son is BRAF positive.  That opens up the whole oral meds as targeted therapy instead of the Opdivo…We are looking at college starting in a couple months and biweekly infusions will be difficult as he is dorming about 45 minutes away from home and will be playing baseball for school….obviously we will get him to his treatments no matter what the inconvenience. The doctors said hopefully a few months in he can switch to monthly infusions instead. 

      I am just curious how everyone feels about Opdivo vs. the oral meds…the doctors seem to feel they are both equally effective as adjuvant therapy…and my son would prefer the oral meds. I have no idea which one insurance will prefer. 

      I am hoping to use other patients personal experience as well as the literature out there to make the best decision for my child. He has his whole life ahead of him…I need to get this right!!!! 

      Thanks!!! 

      Kelly 🙂 

    Viewing 3 reply threads
    • Replies
        • June 28, 2018 at 2:01 am
        Bubbles
        Participant

          I am sorry for what you and your son are facing.  Here is a primer of basic melanoma care that I put together.  Immunotherapy and targeted therapy are both covered.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          I hope this helps.  I wish you both my best.  Celeste

            • June 28, 2018 at 3:08 am
            KellyH
            Participant

              Thank you Celeste!!!!!  🙂 

            • June 28, 2018 at 2:31 am
            Ridingaroundwith27Jennifers
            Participant

              Hi Kelly,

              I know how hard this diagnosis is to deal with as I'm the patient.  I can't imagine how difficult it must be to tackle as a parent whose child is the patient.  I don't have any insight into your question on Opdivo vs oral meds but just wanted to say how I admire your strength and focus as a parent supporting your son.

              My concern would be with compliance of taking the oral meds.  It's easy to "forget" to take oral meds with the hustle and bustle of being a freshman.  It's a lot harder to forget an infusion appointment.  Also I'd talk through the effects of alcohol consumption on both treatments.  Your son may be very compliant and not touch a drop or be persuaded by new friends to indulge in some underage drinking.

              I've had very good results on Yervoy/Opdivo combo and then surgery plus Opdivo plus radiation.  I'm also Boston based and see Dr. Buchbinder at DFCI.  They are wonderful and really get the life/cancer balance.  Lately I've been able to do half day at DFCI and then work in the afternoon or vice versa.  

              I have two daughters and have thought long and hard about how to influence them not to partake in underage drinking.  Any advice you have is welcome.  They are 12 and 7 so I have some time to hone my skills.

              You are amazing and I'm sure you and your son will find the right path.  Good wishes to you both.

              Jennifer

                • June 28, 2018 at 3:01 am
                KellyH
                Participant

                  Hi Jennifer.  Thank you. I agree with you about the oral meds and his compliance in taking them. I like the idea of seeing the medicine infusing in his body…I would be very nervous about him forgetting to take his medication while he is away.  My son however is 17 so he is easily “annoyed” by the 2 hour treatments  biweekly and would much prefer the oral meds.  He just wants to be “normal” and the oral meds can definitely give him more of a normal existence but I’m not so sure that’s the best route. 

                  I do not have any real words of wisdom about the underage drinking. I do have to say my son is very anti alcohol which I am so thankful for.  He is completely focused on baseball and has little interest in typical teenage antics. That definitely works in my favor, at least for now. 

                  We live in NY and the PHysicians Assistant here made arrangements for us to see Dr. Flaherty at Boston Mass General to review my sons case.  Dr. Flaherty is an amazing doctor. He will continue to assist in my sons care here at home through my local medical team.  I feel very lucky to have so many “experts” in our corner. 

                  I’m not so sure how strong I actually am…I cry ALOT.  But it’s true what they say you don’t know how strong you are until being strong is the only choice you have.  I have to say that my admiration of you and every cancer patient goes beyond words. Good luck to you always!!! 

                  Kelly 🙂

                  • June 28, 2018 at 10:25 am
                  Linda5
                  Participant

                    Hi Kelly!

                    I just wanted to chip in on the Oral meds…make sure your son is aware that it’s not as simple as popping a couple of pills. I’m on Taf/Mek and they need to be taken at consistent times and you can’t eat for a couple of hours before and an hour after.  I’ve done both and while I appreciate the convenience of taking meds at home, they actually are more to manage around every day. I do six a.m. (so have to get up whether I want to or not) and six p.m. (so dinner with friends? Need to work out a plan).  

                    They’re working for me, and I am able to control my schedule pretty well so I’m not complaining. Just make sure he knows the lay of the land.  

                     

                    All the best to both of you! Linda

                    • June 28, 2018 at 12:27 pm
                    KellyH
                    Participant

                      Thank you Linda!!! That’s very helpful information. He may find that scheduling more “annoying” than the infusions. He’s bern a real trooper through all of this but he’s still a teenager. We are speaking to the doctors today and I feel I am prepared with my questions and concerns. Everyone was a great help!!!! 

                      Kelly 🙂

                    • June 28, 2018 at 12:40 pm
                    marta010
                    Participant

                      Hi Kelly – as others have mentioned, the Braf oral meds are not without challenges.  Also, side effects are not uncommon so it may not be as "easy" as it seems.  My husband has been on Braf drugs for 4+ years – has been hospitalized 4 times for high fevers, adrenal issues, skin rashes, etc.  Hope your son's treatment is smooth and that he has great results!

                      Ann

                      • June 28, 2018 at 2:08 pm
                      cancersnewnormal
                      Participant

                        I was only on MEK… and it was 4 years ago, but it caused a nightmare rash on my face/neck/chest and the accompanying diarhea was no picnic. Additionally… it was my understanding that I had to keep the MEK refridgerated… if that is indeed true, "popping a pill" becomes far less convenient for someone running to and from classes, practice, or out with friends. One final thought… most patient's melanoma will eventually mutate around those drugs, whereas success with Opdivo is a more long term thing of training one's immune system. If every 2 weeks is a hassle, Keytruda infusions are set at 3 week intervals, and there are some patients receiving Opdivo every 4. 

                    Viewing 3 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.

                    Popular Topics