MRF-Logo2019-Horizontal-RGB
Crash and Burn with once a month Nivo
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.

Crash and Burn with once a month Nivo

› Forums › General Melanoma Community › Crash and Burn with once a month Nivo

  • Post
    • April 30, 2018 at 6:02 pm
    tedtell1
    Participant

      I crashed this week, 

      This past Monday I tried doing the double dose to go to once a month. Within a few hours my usual side effects, extreme weakness and fatigue and body aches came on BUT much worse! I ended up almost fainting in Church on Sunday and had to stay overnight for an IV. I know everyone is different, but have decided it's back to every two weeks for me. Don't think my body can take another one of those without another crash and burn if I don't have to! Good news, no indications that any of this has anything to do with the best coming back, still NED as far as I know.

      Ted

    Viewing 5 reply threads
    • Replies
        • April 30, 2018 at 7:46 pm
        tedtell1
        Participant

          FYI; just spoke with my onco. He recommends trying one more month. He thinks the side effects could be temporary and could be fine next time….would love anyone's thoughts on this?

          Ted

          • April 30, 2018 at 8:43 pm
          gopher38
          Participant

            If it was me, I'd ask if there's anything showing up in the blood levels that indicates a problem with an internal organ.  If so, I'd stay on the 2-week program.  If it was only fatigue and aches, I'd try to give it anohter go.  Would be great to go in just once per month (I have no choice because of the trial, unfortunately).

              • April 30, 2018 at 9:09 pm
              Mark_DC
              Participant

                agree wth gopher. I am on keytruda biweekly which is a pain but maybe its working. For the first few days after i feel really fatigued, i can usually bluff my way through it and go to work, yesterday i walked five miles which was too much and i felt exhausted, today have just cycled 35 miles and very happy! Didnt think i could make it. But feel less tired than yesterday. hSo check the bloodwork and if that ok, and if the fatigue gets better soon, then give it another try.

                good luck Mark

                • April 30, 2018 at 9:46 pm
                tedtell1
                Participant

                  Thanks guys, Dr. Dudek suggested we try again, so I think I will do that and take an extra day off work. To this point I have only been taking the day of treatment off. I am going to rest the day after, maybe that will help. Good luck and blessings to you,

                  Ted

                  • May 1, 2018 at 4:00 pm
                  marta010
                  Participant

                    Hi Ted – just wanted to say hello from a fellow Minnesotan – my husband, Larry, is battling this disease.  Dr. Dudek was Larry's original oncologist when first diagnosed.  We heard he was back in MN from Chicago – glad to know he's still treating melanoma patients.  Take care and hope you have a great outcome.

                    Ann

                    • May 1, 2018 at 5:31 pm
                    tedtell1
                    Participant

                      Hi Ann, best wishes to you and Larry. I hope things are going well for him.

                      Ted

                      • May 2, 2018 at 8:46 pm
                      Susanlee528
                      Participant

                        Another Minnesotan here! I’m about to start the once a month dose and I’m pretty leery. I think i would rather go an extra time each month if the side effects were less of a problem. 

                        • May 3, 2018 at 12:04 pm
                        stevek1959x
                        Participant

                          Hi Ted – Yet another fellow Minnesotan here.  I sent you a pm but it must have got lost in spam.  Anyway, I was diagnosed with stage 3C after the beast came back after 14 years.  I had one meeting with Dr. Dudek and scheduled for another this Monday.  I just had an axillary dissection and it look like they got it all (at least what they can see).  I suspect I'll be going the Nivo route after Monday's meeting.  Did you ever discuss getting your treatments closer to home (outside of Regions) yet keep your onco visits at Regions?

                        • April 30, 2018 at 11:25 pm
                        ed williams
                        Participant

                          Hi Ted, never one to shy away from something new with Melanoma and I was actually looking forward to trying the one month program but sadly the clinical trial folks said no!!! That being said, it is early days for the one month approach but on a couple of the other melanoma boards a few have had similiar stronger side effects. My original thoughts of how great this was going to be for patients, fewer visits to oncologist and less blood draws and hospital visits in general is starting to be changed to a more careful, take it slow and watch and wait. If you are new to treatments, I would be cautious not wanting to trigger IRAE's that might get you kicked off treatment!!!Best Wishes!!!Ed

                            • May 1, 2018 at 12:33 am
                            tedtell1
                            Participant

                              Thanks Ed, what is an IRAE? I am suspecting it is nasty side effect…but wondering.

                               

                              • May 1, 2018 at 12:38 am
                              ed williams
                              Participant

                                Stands for "Immune related adverse events" or in English shitty side effects like diarrhea or endocrine issues like thyroid issues or pituitary swelling, fun stuff like that!!!

                                • May 1, 2018 at 10:11 am
                                dessie
                                Participant

                                  Hey all,

                                  Tx for posting this… i do my 5th treatment of Opdivo… i have 2 more this one and next of every 2 weeks,, then they plan to take me monthly.   I will do this cautiously and hopefully with zero enhanced side effects… I will keep you posted and hopefully  it will go well.. Oh, in the meantime May 16 I will have my colonoscopy due to the positive Cologuard…Looking forward to all the fun I have in store for me…lol..

                                  Talk soon all… Keep the prayers going for everyone here…We can beat this thing!!

                                  Dessie

                                • May 1, 2018 at 3:49 pm
                                BethL
                                Participant

                                  Hi Ted-

                                  First, thank you for posting about your experiences with the once a month NIVO.  Sorry it got the better of you  this time, but hopefully it was just a one time thing and the next will be incident free!

                                  I am starting the once a month next Tuesday. I am 6 months into the every 2 weeks, so looking forward to being able to cut the remaining treatments in half!  But yours and others postings on the change to monthly have me going in with my eyes wide open – so thank you everyone who has posted on this.

                                  I have been very lucky- i think- to have only fatigue and joint pain issues so far. Hoping the monthly wont change this.

                                  Best to everyone here fighting this disease.

                                  have a great day –

                                  -bethL

                                  • May 1, 2018 at 4:20 pm
                                  Hukill
                                  Participant

                                    I have had 2 double doses with no change in side effects except a small area of rash on each hand that will itch sometimes. I have had a rash since my first combo in 06/2016 but it never itched. 

                                    • May 2, 2018 at 2:53 am
                                    jszeoli
                                    Participant

                                      Thanks for posting Ted, appreciate you sharing your experience. I just finished my third treatment on the every two weeks plan. No serious side effects yet, slight rash on my arms and chest, a little itching, nothing really. I have not been offered the once a month yet. 

                                      Good luck with the second try at once per month!

                                      -Jim

                                        • May 9, 2018 at 2:08 pm
                                        DoubleTT
                                        Participant
                                          Hi Jim and Ted…I will hopefully starting Opdivo in adjuvant setting end of May. My 3b went to 4 as it showed up on my t12 vertebrae. One spot only but means the melanoma is on the move from primary spot on my back. Did a round of SBRT radiation. Now need Opdivo as preferred by my docs here in Toronto to try and stop anything else growing. Are you both BRAF or NRAS gene mutations? I first started in 2016 on a clinical trial of Polynoma study – vaccines Didnt make 24 months made almost 20. Also do you get any flu like symptoms etc joint pain ? or just the rashes? wishing you both success…be nic yo stay in touch Tracey Double TT
                                    Viewing 5 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