MRF-Logo2019-Horizontal-RGB
Advice appreciated re combo 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.

Advice appreciated re combo therapy

› Forums › General Melanoma Community › Advice appreciated re combo therapy

  • Post
    • November 11, 2018 at 8:14 am
    Rosiepup
    Participant

      Hi, I am new to the MRF site but on looking at it, I’m very impressed and everyone seems so friendly and helpful!

      I was diagnosed stage iv in 2015 and started on debraf/meck at that time. My melanoma has  been stable with no real evidence of any disease for about three years, until now! I had a CT scan, including my head, which picked up a 5mm lesion in the left frontal lobe, devastated! This was just recently so still in shock. I naively thought I had it licked! I’m about to get targeted radiotherapy for this.

      I’m on Debraf/meck and have been throughout, with the occasional short break due to side effects, but on the whole tolerated it fine.I’ve also got a couple of slightly enlarged lymph nodes in my chest area.

      I was at the oncologist yesterday to discuss treatment options for after the radiotherapy and it’s not great.

      Apparently they believe that the lymph nodes that have increased very slightly  in size, added to the brain lesion, indicates that the current treatment isn’t working as well. 3 options offered-

      1. Stick with what I’m on just in case
      2. One single type of immunotherapy treatment-Nivolumab
      3. Two immunotherapy drugs Nivo/Ipi, administered together-which they tell me has better results but high chance of nasty side effects!
      I’ve opted for the desert island, which they obviously forgot to mention!

      any advice/experiences would be greatly appreciated?

      Fi

    Viewing 8 reply threads
    • Replies
        • November 11, 2018 at 8:28 am
        Rosiepup
        Participant

          Sorry I’ve been trying to send the post above for a week but kept getting the ‘error’ message.  Had emojis in the message and removing them did the trick!

          As a result things have moved on slightly, and I have, with great trepidation, made the decision to go with the combination immunotherapy, which starts tomorrow!  Along with targeted radiotherapy on the 20th.

          Any advice re how best to avoid/deal with potential side effects would be greatly appreciated?  And have I done the right thing??

           Thanks so much for any advice, Fi 

          • November 11, 2018 at 12:15 pm
          MarkR
          Participant

            Hi

            sorry to hear your news

            You can see from my previous posts that I started Ipi/Nivo earlier this year and had pituitary gland and liver side effects that were severe enough to stop treatment.  From my perspective I had a headache for a few days that was pretty bad and knew nothing about the Liver.  As a result I would do it again in a heartbeat and the general concensus is side effects are a good thing.  I have had a partial response so far but back for more CT scans in a couple of weeks.

            i think you are making the right choice – best to go in with the big guns and hopefully get it sorted once and for all.  The best advice my nurse gave me was to call in the moment you don’t feel right so they can get on top of any side effects quickly.

            best of luck 

            mark

              • November 11, 2018 at 6:47 pm
              Rosiepup
              Participant

                Thanks Mark, I suppose I’ve just been in my ‘I’ve got it licked’ bubble and am just coming to terms with the fact I haven’t! But your right, big guns required and all that comes with it! 

                Thanks Fi 

              • November 11, 2018 at 2:04 pm
              Bubbles
              Participant

                Hi Rosie,

                Sorry for what you are dealing with…but deal with it you can.  You have had quite a good run on the targeted therapy of BRAF/MEK as many develop tumor work around within 7-9 months (though there are those who can be mainatined for years).  Since it is no longer working…I would not be messing around!

                Yes, immunotherapy (especially when combined with radiation like SRS or gamma knife) is proven to be one of the most effective treatments for melanoma in the brain and elsewhere.

                Here is a primer I put together on melanoma treatments generally:

                https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

                Yes, the ipi/nivo can be tougher than nivo alone in regard to side effects.  Many are not able to complete all 4 doses of the ipi.  HOWEVER, we have learned that even getting a couple of those doses in give comparable good outcomes!!!  

                Here is a post regarding the benefits of radiation combined with systemic treatment that I just put together with tons of links within:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/11/srs-and-immunotherapy-in-melanoma-brain.html  

                The big intel here is:  Start immunotherapy ASAP and COMBINE it with targeted radiation.  TONS of data shows that you do NOT have to wait and giving both TOGETHER has much better results.

                I have been in your shoes.  Albeit before all of these options were FDA approved.  However, SRS to my brain met, surgery to other places, and a nivo trial (there was no ipi/nivo combo available) from 2010 to 2013 rendered me NED from melanoma with no further treatment for it since!!! 

                It isn't fair and it isn't easy, but you can do this.  Hope this helps. I wish you my best.  Celeste

                  • November 11, 2018 at 6:51 pm
                  Rosiepup
                  Participant

                    Thanks Celeste,  I really appreciate your help, I have been reading some of your previous posts and your an inspiration! 

                    Thanks Fi 

                  • November 11, 2018 at 2:12 pm
                  ed williams
                  Participant

                    Hi Rosiepup, here is a pretty good oncologist presentation of how to manage IRAE's (side effects) of immunotherapy drugs. https://www.youtube.com/watch?v=2MAmESB4czA

                      • November 11, 2018 at 6:52 pm
                      Rosiepup
                      Participant

                        Thanks so much for that, Fi

                      • November 11, 2018 at 6:18 pm
                      Rosiepup
                      Participant

                        Thank you all so much for your responses and the information and encouragement. It’s all greatly appreciated!  I have been trying to do my research but it’s great to get a helping hand and also to hear about others experiences.

                        I am in Scotland so we’re way behind you all in the length of time treatments have been available! I will let you know how I get on and, if you don’t mind, may have more questions??

                        Many thanks again 

                        Fi

                          • November 11, 2018 at 9:41 pm
                          MarkR
                          Participant

                            Hadn’t realised you are a fellow Brit – seems a few more of us are joining.

                            I’m being treated at the Royal Marsden in London under Prof James Larkin.  Thankfully this treatment is now available but we have a few more challenges than those in the US.  One thing to be aware of is that if you go off treatment for more than 3 months the NHS won’t pay for you to continue treatment.  Not sure it’s the same in scotland, but something to be aware of if you get more severe side effects.  For me the treatment has been working ok thus far and my last infusion was early May and I have private medical I can use if I need to go back into treatment.

                            best wishes

                            Mark

                            • November 11, 2018 at 11:03 pm
                            Rosiepup
                            Participant

                              Think it’s maybe different up here but not sure.  I was so concerned about the side effects that my oncologist has said that if I have side effects that are difficult, we will stop the combo and go straight to mono therapy?

                              My difficulty is, and they can’t rule it out, I’m not convinced my current debraf/meck treatment has stopped working.  Although I have the small brain lesion, I only have two lymph nodes that have gone up by a few mm.

                              She is taking a precautionary course, which I understand but which makes me nervous.  I don’t know if I’m being naive, but I do trust her. 

                              Am I missing the bigger picture??

                              Fi 

                              • November 12, 2018 at 6:36 pm
                              MarkR
                              Participant

                                I’m no expert but you have progressed on your current regime which says something isn’t working.  I would happily go on to Ipi/Nivo again despite the issues I had and have it available to me in reserve through my private medical insurance if I need it.  

                                I only mentioned it as something to be mindful of if you come off treatment as opposed to concern you.  My apologies if I caused you additional worry.

                                In my situation my consultants keep telling me they have a number of people in my situation but have been off treatment for a number of years, had no single Nivo transfusions yet have had no progresssion.  In the UK the team looking after me led the UK trials on Ipi/Nivo so I have full confidence in what they are telling me.

                                best wishes 

                                mark

                              • November 11, 2018 at 10:40 pm
                              Edwin
                              Participant

                                When I began ipi/nivo immunotherapy, I had skim milk in my refrigerator.    I lost too much weight.   Then I switched to whole milk and added whole milk yogurt, ice cream and meat.   I recommend stocking your refrigerator with some high calorie food.    My oncologist postponed my 2nd infusion of ipi until I regained weight.  I received my 2nd infusion of ipi 9 weeks after my 1st one.

                                  • November 11, 2018 at 11:21 pm
                                  Rosiepup
                                  Participant

                                    Oh dear, I’ve already lost a lot of weight recently, which no one can explain, if I lost much more I would disappear down the nearest drain! 

                                  • November 12, 2018 at 2:06 am
                                  Mat.in.Brooklyn
                                  Participant

                                    Hi Fi.

                                    I was diagnosed with Stage IV/brain mets in December 2017 and , like you, went with the ipi/nivo combo. I was able to have all 4 treatments and gained some endocrine issues (manageable) and vitiligo. I had a good response after two treatments and six months later a clean MRI. The ipi/nivo combo worked wonders for me and I wouldn't hesitate knowing what I know now. I wish you the best and I hope it takes care of the rest!

                                    • November 12, 2018 at 1:28 pm
                                    marta010
                                    Participant

                                      HI Rosie – my husband has been on Dabrafenib for 4+years with fairly stable results.  He recently added Keytruda after a previously treated brain met decided to act up.  He has been on both treatments concurrently since March and other than a flare up of adrenal insufficiency, has been tolerating the dual treatment.  He has pretty persistant joint/muscle aches and is easily fatigued.  So far, so goood with his last scans showing nothing new.  Although we're not sure if the dabrafenib is still effective, his team is reluctant to discontinue.  Hope you're able to find the right combo for your situation.  Take care.

                                      Ann

                                      • November 25, 2018 at 12:25 pm
                                      Rosiepup
                                      Participant

                                        Hi thanks for the support given, finally feel able to give you an update:-

                                        Unfortunately things have not gone very well for me!  I received my combination immunotherapy on Monday 12th November and over the week and a half after my immunotherapy Treatment’s I became progressively more breathless, to the point where I couldn’t walk the length of the hall without gasping, the only way I could get relief was to lie down flat!  This Culminated in me being admitted to the Hospital after my radiation treatment last Tuesday, 20th Nov, and I’m still in!  Initially it was thought it was pneumonitis but CT shows bilateral plural effusions & oedema, I’m receiving diuretics & oxygen treatment.

                                        The feeling is, it is probably due to the treatment However my oncologist is struggling to find any similar cases, especially so soon after the first combo therapy?  Does this sound similar to anyone’s experiences or can anyone shed any light on it, I’m really perplexed its gone wrong in this way??

                                        Any advice, information would be much appreciated!
                                        Thanks
                                        Fi

                                    Viewing 8 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