MRF-Logo2019-Horizontal-RGB
Jubes
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.

Jubes

Forum Replies Created

Viewing 7 reply threads
1 2 3 … 54 55 56
  • Replies
      • July 7, 2020 at 9:07 pm
      Jubes
      Participant
        Hi BRR
        So good that you can research and advocate for your father.
        I also had lung Mets. They were large. I started with Keytruda ( similar to opdivo) which shrank them down and then had the vats surgery to remove them. I had an infusion every three weeks for 9 months. At that point my side effects were too bad to continue. In my case I had very bad arthritic type of joint and muscle pain and couldn’t move. I am now on a self inject drug called humira which works wonderfully and I live and work as normal. ( I’m 63) IN general the side effects seem to be the result of the body’s inflammation reaction. The one to watch out for is colitis which is serious. In very rare cases the heart can be inflamed. The other very common side effect is loss of thyroid function. That happened to me right away and I am on thyroxin, just a small pill once a day and my hormone levels are normal
        I hope the immunotherapy works as well for your father as it did for me
        Anne-Louise
        • September 21, 2019 at 9:23 pm
        Jubes
        Participant
          Thank you all and much love!!
          • March 26, 2019 at 9:07 pm
          Jubes
          Participant

            Great news Scooby! Thanks for sharing 

            • March 16, 2019 at 2:21 am
            Jubes
            Participant

              Great to get an update Celeste! Hope you keep working through those issues and look forward to hearing about a future trip to Italy! XX 

              • December 15, 2018 at 7:52 am
              Jubes
              Participant

                Thanks Les. So beautifully written. 

                Love anne-Louise 

                • December 15, 2018 at 7:46 am
                Jubes
                Participant

                  A very happy Christmas to you. Congratulations on the good news!!

                  • November 29, 2018 at 11:45 pm
                  Jubes
                  Participant

                    Yep. I’m anaemic but the doctors just shrug and say it’s due to the disease. I feel ok. But I’ve been anaemic for 4years. They don’t seem to want to do anything about it. As  I’ve had some lung removed and have inflammation through my body it’s hard to tell if breathlessness could be from anaemia or something else  

                    Anne-Louise

                    • November 15, 2018 at 11:28 am
                    Jubes
                    Participant

                      Hi les. Just wondering how you’re going?  I do hope you are getting stronger and closer to the Italy trip!  Love Anne-Louise xx

                      • July 6, 2020 at 8:05 pm
                      Jubes
                      Participant
                        We spent a month in NY in December. Heaven! My husband is from Connecticut. I studied in Philly and we lived in LA for a little while. Didn’t ever get to Texas… but I am sending much love and support to all of you over there, one of the great countries of the world. Apropos that…How good is Dr Weber?! I sent him a random email once ( it was early days and I was worried that infliximab would make my tumour grow) and he replied right away!!
                        • July 6, 2020 at 7:56 pm
                        Jubes
                        Participant
                          Me too! Playing 3 times a week and carrying my bag! Take care xx
                          • July 6, 2020 at 7:54 pm
                          Jubes
                          Participant
                            So good to hear you’re doing well Les!
                            • February 10, 2019 at 8:47 pm
                            Jubes
                            Participant

                              Any hints on how to upload a video onto here?

                              • February 10, 2019 at 8:27 pm
                              Jubes
                              Participant

                                I will try to send you something Celeste. Not that I won’t come and meet you in person at my first opportunity, but just for the meantime I’ll try to post a video of a small performance I did at our golf girls get together. Not sure if it will work. 

                                • February 10, 2019 at 8:24 pm
                                Jubes
                                Participant

                                  I hope you have the same result Mark! In any case we can feel like every bit of our life is a great bonus now! 

                                  • February 10, 2019 at 8:08 pm
                                  Jubes
                                  Participant

                                    Well. The major works we played on tour were Mahler 5 and prokofiev 5. If they’re too long for you just listen to the Mahler 5 slow movement. You will love it!! 

                                Viewing 7 reply threads
                                1 2 3 … 54 55 56