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.

adrianc

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      adrianc
      Participant

        Sorry that you and your dad are dealing with this.Have your father tumors been tested for gene mutations?Ipi/Nivo side effecte vary from one patient to another.The common side effects that had been reported  are fatigue, skin rashes, muscle weekness/joint pain, flu like sympomps. Then others  more serious conditions like colitis , nausea, tyrhoid ,pituary and adrenaline glands dysfuncion can happen in some patients.Some patients have  mild symptomps , some more intense, some had adverse reaction,its very individual.Wishing your dad good luck with the treatment and keeps us posted

        adrianc
        Participant

          Sorry you are dealing with this but as mentioned you are already on your way to treating it with Opdivo. Have you and your team discussed adding Ipi to Opdivo? The combo has 65% response rate as compared to 45% response rate for Opdivo alone .The combo downside is that  it has more adverse side effects , however they are worth taking the risk . Also, has your tumor load been tested for any gene mutations? If not,  it would be  a good idea to discuss genetic testing with your team that could open the way to targeted therapies. Best to you and keep on fighting,

          adrianc
          Participant

            Sorry to hear about your immunotherapy results.Have your tumours been tested for  gene mutations?Genetic testing could open the way to targeted therapies as your next line of treatment.Radiation is a viable option and could slow down the disease but it wont't cure you.Hang in there and keep the fight.

            adrianc
            Participant

              Despite the first clinical trial of Keytruda/Incyte not showing significant improvement in progression-free survival  in melanoma patients ,the good news is that researchers are continuing to explore  how the IDO1 inhibition and other mechanism can improve outcomes for patients in needs:

               

              adrianc
              Participant

                I have been misdiagnosed /twice/ with "cysts" by local doctors which  turned out to be melanoma/melanoma recurrence,losing precious time to pursue an immediate  treatment.If that bump is not supposed to be there, this is already reason for concern .Be vigilant and leave nothing to the chance.I would urge  you to seek the expertise of medical center of excellence/melanoma specialist ASAP. This cancer can hide and blend, its very sneaky and unpredictable. I would also request scans they can indicate what exactly is going on/ although scans can never fully reveal the whole picture due to their limitations/.Best wishes to you both

                adrianc
                Participant

                  A little bit more information would be helpful for example what was the measurement of the left groin node as per the MRI?If bigger than 5-6 mm it should have shown on the PET .Not sure what country your mom is being treated in but her doctors must have mentioned what kind of  chemoterapy had been discussed.Chemotherapy had shown not to be very effective in melanoma.If you are not confident with the medical care your mom is receiving in your country maybe you should seek treatment in close by countries medical centers that are up to date with the latest melanoma treatments.Best of luck to you and your mom.

                  adrianc
                  Participant

                    Good to hear that you are feeling better,Mike.Wishing you the best of results with your upcoming scans.Stay in the fight.

                    adrianc
                    Participant

                      There are patients on this board who have succesfully battled even bigger number brain tumors  and are still alive and NED. Please don't put a number on your survival….have you discussed SRS and iimmunotherapy/checkpoint inhibirtors/ with your onco team as the  next  treatment after Taf/Mec?It had worked  quite successfully for other patients.I hope you will hear from them soon.Best of luck to you

                      adrianc
                      Participant

                        Thank you all for the input it has been very helpful.It looks like the most reasonable approach would be  to stick to a healthy balanced diet including all food groups  in moderation.Also I decided to cut off completely  alchocol and avoid  the simple sugars.Thanks once again to everyone

                        adrianc
                        Participant

                          Anybody can have their say, its called freedom of speech, the first amendment of the US constitution.

                          adrianc
                          Participant

                            Also that the study  you refer to is from 2016  article and it says that the mucosal melanoma patients have 23% response rate to anti-pd treatment.The link provided below your post is from February 9th,  2017 and it points to a much higher percentage, 35%.With the newest research and advancement in melanoma  treatment, and the second line of new immumnotherapy Incyte /epacadostat/  in combination with anti-pd  currently still on trial , this number is likely set to rise even higher in 2018.Therefore the information provided on your blog is not up to date and you should be careful with pushing your blog as a last instance of medical information.

                            adrianc
                            Participant

                              Your information on mucosal melanoma is not correct.There is a much noise made over the Internet with clashing data depending on the particular study and clinical trial group.Here is a link that indicates that the  Anti-PD checkpoint inhibitors  are beneficial to patients with mucosal melanoma:

                              Also studies  in patients with mucosal melanoma with NRAS mutation had shown that 7 out of 11 patients /64%/ are responders therefore the Anti-PD had shown the highest response rate in patients with NRAS mutation compared to any other melanoma type, including cutaneous melanoma.

                              It would be good  to check yout facts first.

                               

                               

                               

                              adrianc
                              Participant

                                Yes, agreed. It's a text book rule to continue keeping  this space friendly,civilized and clean space by kindly welcoming  patients  like Rob578 .Keep fighting,Tex!

                                adrianc
                                Participant

                                  I agree.Spot on.Too many folks  with control issues here who have declared themselves to be forum experts, without having medical background but they keep peddling imported search they collected randomly online.

                                  adrianc
                                  Participant

                                    Nodes can be enlarged due to other reasons like passing an infection, inflammation,recent surgery etc.However you should request the MRI report if you don't have one and go over the results with her doctors.Cancerous lesions have specific patterns like non uniform enchancement and round morphology.Any node that is bigger than 1.1 cm is considered abnormal so with melanoma diagnosis you should leave nothing to the chance.Best wishes,

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