ToddG

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      ToddG
      Participant

        My itching and fatigue has started to subside.  Today, I am going in for my 3rd maintenance dose of opdivo.  I successfully completed 4 doses of ipi/nivo as a stage IV with incredible results! The itching started with the first ipi/nivo combo in April, but was tolerable, only on my lower back, right rib cage, and lower left calf.  Mine never got so bad I needed to take a benadryl, but I have read that it has helped others.  I have continued to work full time, though the afternoons have me yawning quite a bit!  Good luck, fight hard, and never give up!

         

        Todd

        ToddG
        Participant

          I hope they knock it all out!  Good Luck!

           

          Todd

          ToddG
          Participant

            Congratulations!  I'll  be having nivo # 3 for maintenance next week.  I'm hoping to avoid both thyroid and colitis!  Ugh!  The latter has me worried………….

             

            Todd

            ToddG
            Participant

              Fantastic news!  Always great reading about this kind of progress, giving hope to the rest of us!

               

              Todd

              ToddG
              Participant

                Thank the Lord for shrinking tumors!

                 

                TG

                ToddG
                Participant

                  I had tumor load increase while on Taf/Mek.  I just finished 4th round of ipi/nivo.  Around round two, I could no longer feel the palpable tumor I had under my right arm.  My net Pet/Ct scan is coming up next week and I hope to have a better answer for you by then.  I'm feeling pretty good, though!

                   

                  Todd

                  ToddG
                  Participant

                    My condolences…and prayers for you!

                    I hate this f'n cancer and what it does to families!

                    I appreciate how strong you are and what a fighter and caregiver you have been!

                    Blessings to you!

                     

                    Todd

                    ToddG
                    Participant

                      What a great resource you are!  Thank you for your work!

                       

                      Todd

                      ToddG
                      Participant

                        Cheers!  Great work as always!

                         

                        Todd

                        ToddG
                        Participant

                          Please go see a dermatologist.  Have the biopsies done if required, and keep us updated.  Get all the information you can from your doctor visits and come here to help sort out what you do not understand.  Good luck!

                           

                          Todd

                          ToddG
                          Participant

                            I was recently moved to stage 4 with my last PET showing 2 spots in my spine as well as a spot in my liver.  Prior to the PET, I was stage 3.  I had been on Taf/Mek and then Zelboraf/Cotellic.  Once I was stage 4, my treatment was switched to immunotherapy.  I just had my second infusion of opdivo/yervoy a few says ago.  One of the swollen lymph nodes I could actually feel under my arm has been getting smaller and less noticeable since my first treatment.  I am BRAF positive.  I'm looking forward to my next two treatments and then another PET/CT.  I'm feeling well with little side effects.

                             

                            Todd

                            ToddG
                            Participant

                              My first treatment was one week ago. I've had fever, chills and fatigue most of the week.  I have to stay on top of my ibu (600-800mg) every 6-8 hours and tylenol (200mg) every 4-6 or the side effects show themself.  If not, fever will spike to the 102.5 area and chills as described above.  Also, I had several nights of sweats so bad I would be soaked, along with the pillow, sheets, dog, whatever was near!  I just got back from having an echocardiogram as the oncologist wants to make sure the irregular heartbeat he heard yesterday is not the beginning of cardiomyopathy.  Keep your spirits up and stay on top of your meds.  My side effects did not start until the day after.

                              Todd

                              ToddG
                              Participant

                                I had the complete opposite symptom.  I did find, however, the following regime helped me stay more or less regular, and more or less pain and fever free:

                                2 tylenol at 5:00 am

                                3 Ibuprofin at 6:00 am

                                2 Taf and 1 Mek at 6:30

                                Breakfast at 730-800ish

                                2 Tylenol at 1100

                                Lunch

                                3 Ibu at 2:00pm

                                2 tylenol at 5:00pm

                                2 Taf at 6:00

                                dinner at 7:00

                                3 Ibu at 10:00

                                2 Tylenol at 11:00 if still awake.

                                 

                                I found that eating an hour after, instead of the drugs 2 hours after eating, help regulate my body a little better.  Hope this helps!

                                 

                                Todd

                                ToddG
                                Participant

                                  I do not see the oncologist everytime.  I go straight to the lab with no out of pocket expese. I suppose it depends on what insurance you have and what center or clinic you go for treatment.  Prayers for you and Jim!  I've had two nivo maint infusions and won't see doc until the 4th one.  Side effect to watch out for is colitis…

                                   

                                  Todd

                                  ToddG
                                  Participant

                                    With joint and muscle pain and the lymph under my arm protruding, it has been difficult to get comfortable. I do fall asleep but wake up frequently, especially with the night sweats. Since passing the sweats hurdle, been sleeping better.  The joint and muscle pain has subsided with the ibu/tylenol regimine.  Doing better one week out.

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