Anyone have experience with OPDIVO?

Ocalagal99
Ocalagal99 Member Posts: 29

My onc will be starting me on OPDIVO this coming week after approval from Bristol-Meyers.  This is the same type of chemo that President Carter got and which was so successful for him.  It has now been approved for several cancers including recently for colon cancer.  It has not yet been approved for Uterine which I think is why they approved me to see if it will work.

 

Has anyone had any experience with this new drug therapy and how did you tolerate it and minimize any side effects.  I would very much appreciate your thoughts.

 

Thank you.
Ingrid

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Comments

  • EZLiving66
    EZLiving66 Member Posts: 1,477 Member
    edited May 2016 #2
    I have no experience with it

    I have no experience with it but I sure hope it works for you.  Keep us posted!!!  I'm very interested to see how you do.

    Love, 

    Eldri

  • Kvdyson
    Kvdyson Member Posts: 789
    Opdivo - exciting new treatment

    Ingrid, I also have no experience with Opdivo but am very interested in hearing how it works for you. Please keep us updated. I had a malignant melanoma removed back in 2004 and have always wondered if there was some relation between it and my subsequent uterine carcinosarcoma diagnosis. My gyn-onc said there is no connection but I'm not so sure. Keytruda (Merck's version of Opdivo) worked so well for Jimmy Carter's malignant melanoma that if it does work for you, that may indeed indicate some genetic connection.

    Wishing you good luck on your treatment! Kim

  • Ocalagal99
    Ocalagal99 Member Posts: 29
    Kvdyson said:

    Opdivo - exciting new treatment

    Ingrid, I also have no experience with Opdivo but am very interested in hearing how it works for you. Please keep us updated. I had a malignant melanoma removed back in 2004 and have always wondered if there was some relation between it and my subsequent uterine carcinosarcoma diagnosis. My gyn-onc said there is no connection but I'm not so sure. Keytruda (Merck's version of Opdivo) worked so well for Jimmy Carter's malignant melanoma that if it does work for you, that may indeed indicate some genetic connection.

    Wishing you good luck on your treatment! Kim

    - Bristol-Myers has approved me for the Opdivo treatment at NO COST.  I guess neither Medicare nor AARP Plan F would pay for this still experimental and very expensive immunotherapy option.  It was just approved also for colon cancer but not yet for mine, so they probably would like our input for their research.
    Will start on Thursday.  Triage nurses say they haven't seen any side effects and no pre-meds are given prior, so hoping for the best with fingers crossed.

  • EZLiving66
    EZLiving66 Member Posts: 1,477 Member

    - Bristol-Myers has approved me for the Opdivo treatment at NO COST.  I guess neither Medicare nor AARP Plan F would pay for this still experimental and very expensive immunotherapy option.  It was just approved also for colon cancer but not yet for mine, so they probably would like our input for their research.
    Will start on Thursday.  Triage nurses say they haven't seen any side effects and no pre-meds are given prior, so hoping for the best with fingers crossed.

    That's great!!!  Please let

    That's great!!!  Please let us know how this works for you!!!

    Love,

    Eldri

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,081 Member
    edited May 2016 #6
    Ingrid this new is SO

    Ingrid this new is SO interesting!!  When I saw the ad for this drug on the commercials I emailed BMS to thank them because they called out those who participated in the trials, and I am so greatful for these wonderful people who participate.  

    Please let us know how it goes for you!

  • pinky104
    pinky104 Member Posts: 574
    Kvdyson said:

    Opdivo - exciting new treatment

    Ingrid, I also have no experience with Opdivo but am very interested in hearing how it works for you. Please keep us updated. I had a malignant melanoma removed back in 2004 and have always wondered if there was some relation between it and my subsequent uterine carcinosarcoma diagnosis. My gyn-onc said there is no connection but I'm not so sure. Keytruda (Merck's version of Opdivo) worked so well for Jimmy Carter's malignant melanoma that if it does work for you, that may indeed indicate some genetic connection.

    Wishing you good luck on your treatment! Kim

    Kvdyson

    I also have had skin cancer, but it was just a basal cell carcinoma (my husband had the melanoma).  I don't recall what year mine was, but I'd say it was somewhere between 2005 and 2007.  My family physician I had back then stopped practicing medicine and I turned my records over to my new and current physician, but not all of my records were kept.  My stage IVb UPSC was found in May, 2010.  I've also had a couple of actinic keratoses, which, if I hadn't had them removed, could have eventually turned into melanomas.  The last one was about 6 months after chemo.  My dermatologist warned me that I was at a higher risk for skin cancer because of having gone through chemo.  There's less immunity during chemo, he said, so you should be especially vigilant to watch for its return. 

    I was one of those fair-skinned people who was always burning my skin to a crisp trying to get a tan when I was a teenager (when we didn't know better back in the 60's).  One time my skin peeled off in chunks that were almost as hard as fingernails.  I'm sure that's why I got my skin cancer.   

  • Kvdyson
    Kvdyson Member Posts: 789
    pinky104 said:

    Kvdyson

    I also have had skin cancer, but it was just a basal cell carcinoma (my husband had the melanoma).  I don't recall what year mine was, but I'd say it was somewhere between 2005 and 2007.  My family physician I had back then stopped practicing medicine and I turned my records over to my new and current physician, but not all of my records were kept.  My stage IVb UPSC was found in May, 2010.  I've also had a couple of actinic keratoses, which, if I hadn't had them removed, could have eventually turned into melanomas.  The last one was about 6 months after chemo.  My dermatologist warned me that I was at a higher risk for skin cancer because of having gone through chemo.  There's less immunity during chemo, he said, so you should be especially vigilant to watch for its return. 

    I was one of those fair-skinned people who was always burning my skin to a crisp trying to get a tan when I was a teenager (when we didn't know better back in the 60's).  One time my skin peeled off in chunks that were almost as hard as fingernails.  I'm sure that's why I got my skin cancer.   

    Skin cancer link to uterine cancer?

    Pinky104, I go to my dermatologist every 2 years for check-ups now. I had biopsies on two suspicious growths this March but they were both non-cancersous.

    I have an olive skin tone so I never really burned when I has a kid. The malignant melanoma was in the inside of my upper right arm - not a place that ever even gets sunlight on it unless I raise my arm over my head.

    It also didn't look like a melanoma at all. It was the same color as my regular skin and perfectly round. The only reasons I even went to have it looked at was because it itched and then I noticed that it was getting bigger. The dermatologist was SUPER surprised when the biopsy came back. He was in a panic when he called to tell me the news. Thankfully, the surgery to remove a large area around the growth was the only treatment necessary.

    I'll be so interested in watching the Opdivo/Keytruda trials to see if they indicate some link between the treatment of the two cancers.

  • Ocalagal99
    Ocalagal99 Member Posts: 29

    Had my first OPDIVO infusion today.  So far so good.
    My onc tells me that one of the reasons Bristol-Myers approved me for the free treatments is that they are working on finding out if it works also for Uterine mets and I was the perfect candidate with chemo/radiation/chemo already done and generally in good health, except for the chemo/radiation side effects that are still lingering.
    So now it's a waiting game.  Will get 5 more treatments, two weeks apart and then another scan to see.  He also says it takes at least 3 months to see changes and even if one stops treatment the beneficial effects continue on.
    Keeping fingers crossed!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member

    Had my first OPDIVO infusion today.  So far so good.
    My onc tells me that one of the reasons Bristol-Myers approved me for the free treatments is that they are working on finding out if it works also for Uterine mets and I was the perfect candidate with chemo/radiation/chemo already done and generally in good health, except for the chemo/radiation side effects that are still lingering.
    So now it's a waiting game.  Will get 5 more treatments, two weeks apart and then another scan to see.  He also says it takes at least 3 months to see changes and even if one stops treatment the beneficial effects continue on.
    Keeping fingers crossed!

    Ocalagal99

    I'm sending lots and lots of positive energy your way! I hope the side effects are minimal and that this works for you. And, what a great gift to the rest of us as well. Please keep in touch and let us know how you are doing.

    Love and Hugs,

    Cindi

  • BabyCoach
    BabyCoach Member Posts: 95
    edited May 2016 #11
    Ocala Gal

    YOU are our STAR and CELEBRTY!  We want every detail

    Mary Ann

  • Ocalagal99
    Ocalagal99 Member Posts: 29
    BabyCoach said:

    Ocala Gal

    YOU are our STAR and CELEBRTY!  We want every detail

    Mary Ann

    BabyCoach- Mary Ann, not a star at all.  Just doing what I am told and what I can to maybe lick this horror.  
    So far, no noticeable side effects other than the remnants from Doxil such as fatigue, some bone pain and my always chronic aching back.  Hoping it will stay this way!  Will keep everyone updated how it continues.  31 months since dx and counting, LOL!

  • Abbycat2
    Abbycat2 Member Posts: 644
    edited May 2016 #13
    We're rooting for you, Ingrid

    I am curious about the selection process.  Did Bristol-Meyers select you because you have a certain kind of uterine cancer, say UPSC, sarcoma or endometriod?  What kind of uterine cancer were you diagnosed with and what stage? 

    I wish you great results!

    Cathy

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited May 2016 #14

    Hi, Cathy, thanks for your encouragement.

    I was dx with Stage 3C Endomentrial Cancer in the Uterus in Nov. '13.  Had radical hystorectomy by DaVinci removal and it was felt that all had been removed.  Treatment of a sandwich was ordered with Carbo/Taxil, radiation, and another round of Carbo/Taxil which did not happen as I did not tolerate the Carbo well.  Hormone therapy after that for 6 month which did nothing and lymph nodes in my abdomen had become involved.  More radiation to take care of that.  My marker went down during that and then started rising.  So the only option available at that time ('14) was Doxil which was recommended by Moffitt in Tampa.  We did 9 rounds of that and that stopped working.  By this time there had been good results with Opdivo for other cancers, including Pres. Carter's who received a similar drug, so that's when my onc suggested Opdivo if we could get Bristol-Myers to approve me since it has not yet been approved by the FDA for my cancer.  It recently received limited approval for some types of colon cancer also.
    My onc told me that he felt sure that they wanted the information they could get from me for their studies so it's FREE.  It's very, very expensive and Medicare/Insurance won't cover it as of now.
    It is given every 2 weeks for  treatments and then another scan to see how, and if, it works.  They have had good results with it in other cancers and my onc is using it on a variety of people now. Next week will be my second treatment.  No appreciable side effects so far.  Will keep updating!

    Please do keep updating

    Fascinating. I also have IIIC and amo on 3rd week of weekly Taxol with every 3rd week Carbo. Praying for response but good to know there's another option should it re-occur. Thanks for providing solid hope. 

  • Ocalagal99
    Ocalagal99 Member Posts: 29
    Abbycat2 said:

    We're rooting for you, Ingrid

    I am curious about the selection process.  Did Bristol-Meyers select you because you have a certain kind of uterine cancer, say UPSC, sarcoma or endometriod?  What kind of uterine cancer were you diagnosed with and what stage? 

    I wish you great results!

    Cathy

    Hi, Cathy, thanks for your encouragement.

    I was dx with Stage 3C Endomentrial Cancer in the Uterus in Nov. '13.  Had radical hystorectomy by DaVinci removal and it was felt that all had been removed.  Treatment of a sandwich was ordered with Carbo/Taxil, radiation, and another round of Carbo/Taxil which did not happen as I did not tolerate the Carbo well.  Hormone therapy after that for 6 month which did nothing and lymph nodes in my abdomen had become involved.  More radiation to take care of that.  My marker went down during that and then started rising.  So the only option available at that time ('14) was Doxil which was recommended by Moffitt in Tampa.  We did 9 rounds of that and that stopped working.  By this time there had been good results with Opdivo for other cancers, including Pres. Carter's who received a similar drug, so that's when my onc suggested Opdivo if we could get Bristol-Myers to approve me since it has not yet been approved by the FDA for my cancer.  It recently received limited approval for some types of colon cancer also.
    My onc told me that he felt sure that they wanted the information they could get from me for their studies so it's FREE.  It's very, very expensive and Medicare/Insurance won't cover it as of now.
    It is given every 2 weeks for  treatments and then another scan to see how, and if, it works.  They have had good results with it in other cancers and my onc is using it on a variety of people now. Next week will be my second treatment.  No appreciable side effects so far.  Will keep updating!

  • AWK
    AWK Member Posts: 364 Member
    I am being treated with Opdivo.

    I just had my 5th infusion.  No real side effects but then again I am still dealing with side effects from the two clinical trials I waS in.  I got in via a compassionate approval from the drug manufacturer and FDA.  No cost. 

    Here is hoping!  Anne

  • debrajo
    debrajo Member Posts: 1,095
    edited May 2016 #17
    AWK said:

    I am being treated with Opdivo.

    I just had my 5th infusion.  No real side effects but then again I am still dealing with side effects from the two clinical trials I waS in.  I got in via a compassionate approval from the drug manufacturer and FDA.  No cost. 

    Here is hoping!  Anne

    Anne!

    So glad to see you posting and that there are few side affects with THIS chemo! I have a DIL that is taking olaplant(sure I misspelled that) and they mentioned Opdivo as a "possible" next step.  What she is taking now is 10,000 a month!  Please let us know how you are doing!  Best, Debrajo

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited May 2016 #18
    Hi Anne, When will you know

    Hi Anne, When will you know if Opdivo is working for you?

    I can't even imagine how hard it is for your body to mend from all of the other chemos that it had to endure. Glad to see you felt well enough to post though. I hope your strength continues to improve so that you can get back to a normal life. I truly have missed you.

    Love and Hugs,

    Cindi

  • Kvdyson
    Kvdyson Member Posts: 789
    Scans or Markers?

    Hi Anne, will they be doing scans to see if the Opdivo is working or are they just tracking your marker? If the marker, is it CA-125 or something else? Thanks again for sharing your experiences with us. You are on the cutting-edge of this new treatment and it is so wonderful to be learning so much from you. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,081 Member
    AWK said:

    I am being treated with Opdivo.

    I just had my 5th infusion.  No real side effects but then again I am still dealing with side effects from the two clinical trials I waS in.  I got in via a compassionate approval from the drug manufacturer and FDA.  No cost. 

    Here is hoping!  Anne

    Anne!  It is so go to hear

    Anne!  It is so go to hear from you!!!  Please let us know how you are doing.  

  • AWK
    AWK Member Posts: 364 Member
    Scans every six weeks

    CA 125 isn't a good marker for me at all.  My doctors still have it tested due to insurance requirement or protocol as I have been treated following ovarian protocols all along.  I wish you luck with this and understand they are seeing real success with it!  Hugs!  Anne