Nivolumab Adjuvant Therapy

Nivolumab Adjuvant Therapy

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    • #19771
      Anonymous
      Inactive

      Wondering if there is anyone who has gone through Nivolumab Adjuvant Therapy? I was just approved to begin this treatment and like to start a group chat around it

    • #19772
      Anonymous
      Inactive

      Wondering if anyone has been treated with Nivolumb as adjuvant threapy

    • #19848
      Anonymous
      Inactive

      Hi EricRap,
      I just started on November 15th this year, I have had 3 infusions so far. I have 1 every 2 weeks. When did yours start and how are you doing on it?

    • #19850
      Anonymous
      Inactive

      I got my first infusion Friday. Went well and only took 30 mins. I am being given it as adjuvant therapy post tumor removal. The adjuvant program was just approved ~ a month ago in Nova Scotia. I feel really lucky.

    • #19851
      Anonymous
      Inactive

      My therapy takes 30 minutes as well plus the set up time and the flush. Like you I feel very lucky as well, in fact I feel like I won the lottery. So far the side effects are virtually non existent, just a bit of fatigue. I keep praying for no side effects or negligible side effects for the next 11 months. I have been told that this therapy is well tolerated.
      Is your infusions biweekly as well?

    • #19852
      Anonymous
      Inactive

      Yes I felt like I won the lottery too. Yes I am on a bi-weekly schedule. My research both in Canada and with friends in the states in medical community have said that it is well tolerated and much more than earlier variations. Personally I think that is because we have to track so many potential symptoms that is nerve racking. It is even more never racking than fear of the cancer returning. I want to thank you for responding to the post it is nice to know one is not alone going through this stage.

    • #19853
      Anonymous
      Inactive

      I suppose tracking our individual symptoms, real or imagined is nerve racking. I know when I first started November 15th that I was so hyper vigilant for side effects that I probably created a couple that weren’t really there. By the 3rd infusion I found I am much more relaxed and I feel like I am over the hump. If I don’t have any serious ones yet I will probably breeze through this. To date I really only have some fatigue which goes away with a good 4 K walk. One thing I have found is I am more afraid to be around anyone who has a cold or flu so I don’t contract it, end up with a fever and then have to figure out if it is a flu or side effect causing the fever. I now avoid people or situations where I might come in contact with a communicable disease. Thanks for starting this thread, like you it is nice to know we are not alone. Cheers, Mike.

    • #19878
      MikeC
      Member

      Just a Holiday note, I wish everyone here a very Merry Christmas and a Happy, Healthy New Year.
      Cheers, Mike.

    • #19907
      bethharte
      Participant

      Hi,
      I am having surgery on Monday ( the 7th) for a loco-regional recurrence. I was first diagnosed in 2010 with stage IIIA SSM and did a RLND with Interferon for the full 52 week. I was NED until last October when I discovered a lump in the inguinal basin where the lymph nodes were removed. It is very likely I will be starting Nivolumab sometime in late February. The plan is Nivolumab as adjuvant treatment, is it the same for the both of you?

    • #19908
      MikeC
      Member

      Hi,

      Sorry to hear of your recurrence.

      Yes Nivolumab is the same treatment I am on. I started mid November and I am stage 111A as well. I have had 4 infusions so far with 22 to go.

      I will keep you in my thoughts and prayers.

      Please let me know how you are getting on with your treatment and any other thoughts you might have.

      All the best,

      Mike.

      Hope you had a Merry Christmas and a Happy New Year.

    • #22949
      bethharte
      Participant

      I did post this in another topic but I have experienced a minor miracle. My surgery took place January 7th and though the recurrence was Melanoma as we knew all the lymph nodes tested were negative! The surgeon even stated “I’m shocked, this doesn’t happen” . Well it did to me and I will take it lol. I will be staring Nivolumab in February. I have chosen to remain off work while taking the treatment as I am a nurse and the exposure to countless viruses and bacteria, as well as the complication of lymphedema and having a job where you’re on your feet for 10-12 hours, has led me believe that it is my health’s best interest that I take a LOA. I took Interferon for a year in 2010 so I know a little of what to expect with immunotherapy from a patient side. I have a question for you, as you are a couple months in to your therapy what do you find your major challenges with Nivolumab to be. I know with Interferon mine were fatigue and food, everything tasted like band aids. Well not everything, orange pop and ice cream tasted good which led to a thirty pound weight gain. I am really hoping to avoid that this time.

    • #22969
      MikeC
      Member

      Hi Beth,
      Great news about your lymph nodes being clear.

      I’m recently retired so I fully agree with an LOA until your therapy is complete. Every second week has blood work lab and oncologist visit one day with immuno theraphy infusion 2 days later.Being away from work allows one to also take in stress management group courses during the off week to help deal with the mental aspect of this disease.
      Like you I avoid anyone and any situation where there is potential to pick up a virus or bacterial infection. My oncologist has mentioned to me the need to avoid getting ill and using antibiotics as the antibiotics interfere with the Nivolumab so best to avoid those germy people and places as best we can.
      The side effects you asked about have been really very mild so far. I have had some fatigue early on but a brisk walk helped overcome it. No fatigue for the last couple of weeks. I did pick up a 24 hour GI track bug over Christmas with a slightly elevated fever but I was able to get my infusion the next day and had 30 minutes of chills and shaking during the ride home. My wife drives me on infusion days for safety sake.
      I have had night sweats once during the time I have been on this therapy.
      All in all the Nivolumab has been easy to tolerate. Appetite is unaffected and my weight is consistent. Food tastes just as good as before.
      Keep us posted how your therapy goes once you start. I will keep you in my prayers, and hope you have as easy a time as I am having with this drug.
      Good luck and Godspeed.
      Mike

    • #23130
      bethharte
      Participant

      Hi,
      Just wondering how soon after surgery did you start Nivolumab. I did have an appointment with my oncologist today to discuss the matter but with the weather we postponed until Tuesday. My surgery was on January 7th.
      Beth

    • #23133
      MikeC
      Member

      Hi Beth,
      My last surgery was August 27th and I started Nivolumab November 15. So basically 12 weeks.
      Cheers, Mike.

    • #23134
      Annette Cyr
      Keymaster

      Hi all,
      I believe the recommended time frame from final surgery is within 12 weeks. Sometimes they will make exceptions if there has been some complications or other issues, but within that 3 month window is what has been recommended for treatment in the adjuvant setting. Hope this helps. Annette – MNC

    • #23135
      MikeC
      Member

      Hi Annette, thanks for the clarification. I was very fortunate that I came in at the tail end of the 12 week window.I was not aware at the time of my surgery that my Oncologist was advocating on my behalf and I feel very fortunate and blessed to be receiving this treatment and thankful to Bristol Myers Squib and my oncologist for this opportunity.
      Cheers, Mike.

    • #23499
      bethharte
      Participant

      So I start my first Nivo infusion this coming Tuesday March 5th as Bayshore in Hamilton. Anyone go there?
      Beth

    • #23500
      Annette Cyr
      Keymaster

      Hi Beth,
      I have heard of many people that have gone through Bayshore. They should be very used to providing the intravenous treatments for melanoma patients. Hope it is more convenient than the hospital. I will be interested to hear your feedback.

      I think I have finally got all my extended family on board with sun safe clothing and sunscreen use – they were just visiting me in Florida and every activity – whether it was swimming, playing tennis, kayaking or watching baseball – everyone was a picture of sun safety – hats, sunglasses, sleeves and protective swimwear and leggings. I was very proud. There is hope that the upcoming generations will get the message. My mom was one of those elderly ladies whose skin was remarkable – she always protected her skin and was far ahead of her time. Wished I had listened more to her when I was young…

      Good luck with treatment. I hope to hear that all is progressing well..
      Annette

    • #23501
      bethharte
      Participant

      I have often thought what an interesting research project and presentation it would make to correlate the two, the move from prizing natural skin and modest dress of the 1930’s or so, to the days of sun kissed skin and revealing clothing. I believe your mom was “of her time” it was us that lost their way.
      Beth

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