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A primer for standard of care treatment in melanoma
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A primer for standard of care treatment in melanoma

› Forums › General Melanoma Community › A primer for standard of care treatment in melanoma

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      • August 26, 2017 at 12:54 am
      LHiner50
      Participant

        Thank you Celeste.  You provide such useful information.  I read posts every day but have only posted a couple of times with my medication reactions and helpful remedies.  This is the best forum for our disease

        • August 26, 2017 at 2:18 am
        Nanners10
        Participant
          This post is so incredibly helpful and comprehensive! Thank you for all you do Celeste!
          • August 26, 2017 at 2:58 am
          mjanssentx
          Participant

            Celeste – your posts and continued involvement in this community is a really cool thing to be doing.  Even though I don't come back everyday like I used to, BUT I always read your posts to keep up-to-date on the latest melanoma happening.

            Thanks again for your service.

            Michel

            • August 26, 2017 at 4:22 am
            Sharon93065
            Participant

              I cannot thank you enough for posting this.  

              Sharon 

              • August 26, 2017 at 5:21 am
              jc2dad
              Participant
                Thank you! I’m 3C with working MS diagnosis in 06 that is really messing with treatment options.
                • August 26, 2017 at 11:42 am
                Newmanbell
                Participant

                  Cannot thank you enough, just printed this off for my husband.  You truly help so many Celeste, especially putting things in layman terms.  When dealing with this disease, it is so often hard to hear and understand it when you are so scared. This is such a helpful treatment guide for us 3b'rs and above.  Greatly appreciated.

                  Donna

                  • August 26, 2017 at 10:22 pm
                  Jubes
                  Participant

                    Celeste you are amazing. I trust you more than anyone else!

                    thanks for all the work you do for us

                    • August 26, 2017 at 11:04 pm
                    Ridingaroundwith27Jennifers
                    Participant

                      Just wanted to say thank you for everything that you do/have done for this community.  You are a guiding light helping us through the darkness.  it is much appreciated!

                      • August 27, 2017 at 12:06 am
                      ed williams
                      Participant

                        Hi Celeste, why is that when I click on links to your blog, that I always end up eventually going through things like "Sew Chaotically" or something similiar????P.S. Great job on the melanoma link as well. All the best!!!Ed

                        • August 27, 2017 at 12:24 pm
                        Jahendry12
                        Participant

                          This is awesome Celeste!  Thank you so much for all you do for those in and outside this forum. 

                          • August 27, 2017 at 9:42 pm
                          betsyl
                          Participant

                            Hi Celeste,

                            Thanks for posting this interesting and clearly written document.

                            About treating side effects, why is it necessary to stop treatment while treating the side effects? I get it for life threating side effects, but does treatment stop even if the side effects are relatively mild and non-life threatening, like joint pain and fatigue?

                            Thanks again!

                            Betsy

                              • August 28, 2017 at 12:25 am
                              jennunicorn
                              Participant

                                Hi Betsy, just wanted to say that I have had joint pain, fatigue, skin itchiness, and mild rash during treatment and it was never stopped. It generally is only stopped to treat side effects when they start to really affect quality of life or is life threatening. I can still do my usual activities, so no reason to stop, just have to push through and use what I can to alleviate the mild side effects that I experience. The one time I had to skip an infusion was when my liver numbers tripled and I had a fever for almost 3 weeks. I did not do steroids, was able to get through it by just taking some extra time in between infusions to rest and get back to normal. Most have to start steroids to help the immune response to calm down and is best to skip some infusions while that is happening. If it becomes very serious then treatment could be stopped completely.

                                Hope that helped answer your question 🙂

                                • August 28, 2017 at 12:40 am
                                Bubbles
                                Participant

                                  No, Betsy.  Treatment is rarely stopped for rashes, itching, mild joint paint, etc.  However, if a person is experiencing side effects to the extent that steroids are required (severe joint pain, colitis, pneumonitis, or endocrine issues) the drug may be temporarily stopped.  It is all a matter of degree.  c

                                  • August 28, 2017 at 4:20 am
                                  betsyl
                                  Participant

                                    Thanks for the replies, Celeste and Jenn. I'm curious why not continue the anti PD-1 (Keytruda or Opdivo) while at the same time treating the fatigue, joint pain, and brain fog with a strong anti-inflammatory like prednisone? If it's true that the prednisone does not interfere with the anti PD-1, why not treat the disease and the side effects concurrently?

                                    My husband's quality of life it pretty much shot right now due to non-life threatening side effects. He can't do the physical activities he used to enjoy. His tumors aren't gone, so his doc wants to keep him on the Keytruda. He's feeling really depressed on top of it, and I'm worried about him.

                                    -Betsy

                                    • August 29, 2017 at 12:22 am
                                    Bubbles
                                    Participant

                                      If docs think the side effects (and I'm talking about the significant ones I already mentioned…researchers refer to these as Grade 3-4) in question are due to the med being given….then it makes sense that you need to take a break from the causative agent, get the side effects under control with steroids if needed, and then…restart the treatment to see  if the patient can tolerate it.  It is very difficult in melanoma, because, obviously we need the treatment to save our lives…but we can't have the treatment do us in either.  I wish you and your husband my best.  C

                                    • August 28, 2017 at 1:35 am
                                    BrianP
                                    Participant

                                      Nicely done Celeste.  

                                      Hope you are right about Anti-PD1s having as durable a response as Ipi.  My doc at MD Anderson seems to think that Ipi has some characteristics that are more likely to make a lasting impact to the immune system than PD-1s.

                                      Brian

                                      • August 28, 2017 at 8:32 pm
                                      Scooby123
                                      Participant

                                        Thanks Hun for this info so much appriciated in all you do for us . Take care

                                        Scooby❤️

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