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Anyone have experience with OPDIVO?

Ocalagal99
Posts: 29
Joined: Nov 2013

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

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

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

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Kvdyson
Posts: 789
Joined: Jan 2016

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
Posts: 29
Joined: Nov 2013

- 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's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

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

Love,

Eldri

pinky104
Posts: 574
Joined: Feb 2013

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.   

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Kvdyson
Posts: 789
Joined: Jan 2016

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.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

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!

Ocalagal99
Posts: 29
Joined: Nov 2013

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's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

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

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BabyCoach
Posts: 95
Joined: Mar 2016

YOU are our STAR and CELEBRTY!  We want every detail

Mary Ann

Ocalagal99
Posts: 29
Joined: Nov 2013

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!

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Abbycat2
Posts: 644
Joined: Feb 2014

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

Ocalagal99
Posts: 29
Joined: Nov 2013

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!

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CheeseQueen57
Posts: 814
Joined: Feb 2016

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. 

AWK
Posts: 364
Joined: Mar 2013

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

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debrajo
Posts: 1095
Joined: Sep 2011

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

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NoTimeForCancer
Posts: 2591
Joined: Mar 2013

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

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

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

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Kvdyson
Posts: 789
Joined: Jan 2016

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. 

AWK
Posts: 364
Joined: Mar 2013

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

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Soup52
Posts: 902
Joined: Jan 2016

Very interesting! I am 3c endometrial also. I just had my 5th chemo yesterday with just one more to go! I will have a scan sometime after that. Praying for NED, but glad to see there are other possible treatments! 

Donswife48
Posts: 297
Joined: Nov 2015

When I met with my doctor at my 6th chemo, he said after chemo we would just take a watch approach.  He doesn't do scans unless I have symptoms.  He did say not to worry, if it did come back he has other things to treat it with.  This is encouraging news, although I understand it won't be approved for all of us.  Good luck with your chemo and finishing it up.  Hugs Nancy

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Soup52
Posts: 902
Joined: Jan 2016

Thanks Nancy! So far I'm not feeling too bad after chemo 5, just pretty tired. 

Ocalagal99
Posts: 29
Joined: Nov 2013

So I had my second treatment on Friday.  Slight new rash in my groin but taking care of it with Desitin and Cortizone. Was told that might happen and that Prednisone and some cream can handle it.  Other than some bone pain, which could be a residue from my Doxil treatment and nausea, I have not had any side effects so far.
Labs are normal as usual.  I am doing well enough not to have to see my onc next week for labs, so he says.  Got a very nice letter from Bristol-Myers welcoming me to their patient list.  
So next treatment will be in 2 weeks for a total of 6.  My onc tells me that it takes about 3.3 months for results to emerge.  Let's hope they are good ones!
Thanks to all who are following my post and sending their own experiences.
<3 Ingrid

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Kvdyson
Posts: 789
Joined: Jan 2016

Thank you for the updates, Ingrid. They are so very helpful to us. Fingers-crossed that this treatment works for you and continues to have minimal side effects. Kim

Ocalagal99
Posts: 29
Joined: Nov 2013

So had my second treatment last Friday and by Saturday started having the dreaded rash starting.  It's more like a prickly heat rash...and in the groin area....and since it's hot here in FL could be mistaken for that.  It doesn't itch more like a low-grade burning pain. Treated it with Desitin and Cortizone cream over the weekend and called Mon. morning to report it.  They put me on Benadryl which seems to be working but makes me sleepy all the time.  It hasn't gotten any worse so keeping fingers crossed.  If I need it will start me on Prednisone. Next treatment in 2 weeks.
Will keep you updated!
<3 Ingrid

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TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Ingrid, I hope it clears up quickly. Benadryl knocked me out every time they gave it to me.

So, no fatigue or the other usual issues with chemo? If not, that is really a huge step forward along with the opportunity to kill the cancer of course!

Take care of yourself.

Love and Hugs,

Cindi

Ocalagal99
Posts: 29
Joined: Nov 2013

Hi, Cindi, no other side effects that I can put my finger on.  My onc says it is not "chemo" since it works differently from chemo and they don't even give pre-meds at time of treatment.  Treatment is only 30 minutes.  The rash is all I have had and it seems to be getting better with Benadryl.  He told me if that didn't keep it under control he will switch me to Prednisone.
Fatigue is always there since I had Doxil before this and the Benadryl really knocks me out, so I nap a lot.  Wished I could get me energy back!!!
<3 Ingrid

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EZLiving66
Posts: 1358
Joined: Oct 2015

I'm following this too, Ingrid.  I'm so glad the side effects are minimal.  I can't wait to see what the outcome is.  I'm keeping my fingers and toes crossed this works for you!!!

Love,

Eldri

Donswife48
Posts: 297
Joined: Nov 2015

I had standard carbo/taxol chemo, not OPDIVO, but after every taxol had the prickly heat type rash.  One time the skin actually started slogging off.  I used cortizone cream and it seemed to work.  I just find it interesting that rash is a side effect of some of the treatments.  I'm so happy you seem to be tolerating this treatment well, and hopefully it will work for you.  You are a pioneer for us in uterine cancer, hopefully this will lead to more available choices for treatments.  Hugs Nancy

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Kvdyson
Posts: 789
Joined: Jan 2016

Hi Ingrid, thank you for your updates! Sorry to hear about the rash and hope that the benadryl does the trick. I may have already asked this so forgive my chemo-brain but how many Opdivo treatments will you be getting? Also, will you be getting scans to check for progress or is there a marker they are following?

Ocalagal99
Posts: 29
Joined: Nov 2013

Hi, Kydyson,
will be getting a total of 6 treatments, at first, once every two weeks.  They do labs every time and a marker once a month.  Don't know about the CT scan since I have a lot of trouble with scans because of a severe back pain problem so they almost need to knock me out to tolerate lying on the "slab".  Will let you all know what comes after treatment is completed.  My onc told me that he has people who have been on this for 12 months and are doing fine.  So keeping fingers crossed.
All best,
Ingrid

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TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Ingrid, Thanks for posting your update. So glad side effects have been minimal and I sure hope they remain that way through this.

Sending you lots of love, hope, prayers and positive energy for great results!

Love and Hugs,

Cindi

christine8822
Posts: 38
Joined: Mar 2016

Hi Ingrid and Anne: Please keep us posted as to the progression of your Optivo treatment - what it's like, how you feel, what the results are. I have also heard that Keytruda is similar and may also be beneficial for uterine cancer. Have also heard that people whose uterine tumors feature mismatch repair errors may respond better to these immunotherapy drugs. You are on the cutting edge and we are thrilled to have you as pioneers! As someone who recently finished 7 months of chemo/radiation for endometrioid adenocarcinoma stage IIIC, I am so interested in this topic. 

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Lou Ann M
Posts: 996
Joined: Feb 2015

i have been reading this post with great interest.  Since I bombed out with the Avastin, I am even more interested in anything new as I feel that my choices are getting slim.  I have already mentionEd this to my Dr.'s PA and plan to talk to my doctor about Opdivo on Wed at my next appointment.  Please keep the info coming.

Hugs and prayers, Lou Ann

Ocalagal99
Posts: 29
Joined: Nov 2013

Just to update you all on what treatments I have received so far:
Radical hystorectomy by DaVinci method - all seemed to be removed. Carbo/Taxil, radiation, Carbo/Taxil sandwich was ordered as a precaution.
3 Carbo/Taxil treatments which gave me horrible side effects and neuropathy - stopped those
25 radiation sessions on the abdomen in the surgery area
Since I didn't tolerate the Carbo/Taxil,
6 months of hormone therapy, Megace, that was indicated by the type of tumor - no results
Pet scan where activity was discovered in abdominal lymph nodes, rise of CA 125
60 radiation treatment, twice per day, ghastly since my severe backpain now has become chronic from lying on the table two times per day.  Agony!
Pet Scan with more lesions now in the liver and lung, none in the lymph nodes area.
6 treatments suggested by Moffit Cancer Center in Tampa, one per month, of Doxil.  Slight side effects such as more neuropathy, loss of appetite (down 20 pounds), slight hair loss of what had grown back after the Carbo/Taxil, and that constant ugly fatigue, wish I could get my energy back.
CT scan showed no activity in lymph nodes but lung and liver lesions had grown.
We are now at 31 months since diagnosed.  
Started Opdivo for a total of 6 treatments, two so far, every two weeks.  After second treatment "prickly heat rash" which is annoying but treatable.
So I've had a lot of treatments, whatever was available until Opdivo was suggested.
Time will tell!

All best,
Ingrid

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Kvdyson
Posts: 789
Joined: Jan 2016

Hi Ingrid, may I ask who you are seeing at Moffitt? I live in the Tampa Bay area and saw Dr. Hye Sook Chon for a second opinion on my original diagnosis. Kim

Ocalagal99
Posts: 29
Joined: Nov 2013

Hi, Kim,
I saw Dr. Apte who is second in command there and liked him a lot.  He offered me a clinical trial after the Doxil, which I have, for now, declined, as I like the assurance that I am getting the "actual" drug, hence Opdivo.
See if you can get in to see him for a second opinion.
All Best, Ingrid

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Sandy3185
Posts: 228
Joined: Oct 2013

I was also treated at Moffitt. My doctor is Dr Wenham and I also like him and am very happy with the treatment he recommended, his willingness to take the time to make sure all my questions( as well as those of my husband and daughters!) were answered, and the availability, kindness and knowledge of his staff! Moffitt is a great facility (with the exception of the awful hospital food,yuck). I have found that the doctors and staff are excellently qualified and wonderful people.  Love and hugs, Sandy

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TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Sandy and I have the same doctors at Moffitt (gyn/onc and radiologist). I agree with everything she said!

The care I received and the attitudes of everyone that I encountered was incredible.

Love and Hugs,

Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

for outlining all the treatments you had leading up this this.  Like all of us, I am very interested in seeing how it works for you and hoping for the best.  And the fact that there are few side effects is a bonus.  Keep on keeping on!

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BabyCoach
Posts: 95
Joined: Mar 2016

You jab tons of "followers" who await your every report and who are sending healing energy your way!!

Ocalagal99
Posts: 29
Joined: Nov 2013

Gosh, I hate that song!
I didn't mean to be among the missing since I was supposed to have my 3rd treatment last Friday, but since I had gotten the dreaded rash, it was determined at my appointment that, in fact, it was NOT a rash, but a case of SHINGLES!  Yuk!...and I never had Chicken Pox.  So they put me on antibiotics instead of the treatment and postponed treatment until tomorrow.   This will be my third!
The rash has cleared up pretty well so hope no new outbreak will happen after next treatment, but they said this had nothing to do with the treatment. Well, it can't be from sex!!!! LOL
Will keep you updated!

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

Oh, I laughed when I read it couldn't be from sex - LOLOLOL!!  But I'm really sorry about the shingles.  I was going to get my shot last fall but my GP said no flu, shingles or pneumonia shot while on chemo although she did give me a tetanus shot.  Hopefully you'll be all set for your treatment tomorrow.  Everybody is interested in how this works for you!!!

Love,

Eldri

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Ingrid, so sorry to hear about your shingles! My father (rest his soul) had a bout of shingles many years ago and he was in agony. Hopefully you did not suffer. Glad to hear that you're back on track with your treatments and thank you for keeping us updated! Kim

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brissance
Posts: 192
Joined: May 2016

That is not fun.  FYI, in 1996, hubby was having chemo for lymphoma and he, too, got the shingles.  They gave him something like capisan.. a pepper base spray/ointment to put on the "outbreak" and it was really minimally problematic.. for him.  Everyone is different and reacts differently.  Fingers crossed yours will be only a small bumb in the road.  

Ocalagal99
Posts: 29
Joined: Nov 2013

So the shingles outbreak is under control and going away.  Didn't have any pain since that area is still numb from the neuropathy.  That's about the only good thing that can be said about that! They gave me Famciclovir antibiotic 3x pd, the size of my horse's pills, and it makes me nauseous but it did work.  So had my 3rd treatment last Friday and so far no side effects.  I also opted to start Physical Therapy treatments for my severe backpain and the stretching also seems to help.  The backpain is much worse than the treatment side effects.  But so far, fingers crossed, there are no noticeable side effects from the Opdivo.
Unfortunately, was told that my onc will be retiring the end of the month.  How dare he!!!! To be honest, he looks like hell, so I think it's time.  He is 66, 6'4" and bent over, I'm sure from all the stress.  So we'll see what strapping young stud I will be getting.  He's still keeping an eye on things since it is his own practice with many drs so not too worried and he will be teaching and lecturing so will be keeping up on the new things.
Hot as hell here in FL.  Summer has come so staying inside in the a/c, but BORING!

Later!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Yes it is! Seems like Summer got here early. Either that or I am a changed woman from the chemo and the heat and humidity is harder to deal with. So glad to hear you were able to get your third treatment. Also great that you are not experiencing side effects. That is such an amazing step forward for cancer treatments! I hope your back gets better soon. And, that who ever (or is it whomever?) you get as your oncologist gives you the same confidence that you have with your current doctor.

Hoping and praying that this works for you.

Love and hugs,

Cindi

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Ingrid, thank you for the update on your third treatment. Glad to hear that it's going well and you haven't suffered from the shingles outbreak. How are your marker numbers?

Lisa C
Posts: 3
Joined: Feb 2017

May be starting a clinical trial if I am approved. I have stage 4 uterine cancer... diagnosed March 2015.  I have had 12 chemo with taxol and carboplatin. Then I had 12 doxil chemo treatments. I have 6 nodules left that doxil did not get rid of... just kept me stable. Any thoughts on a clinical trial with opdivo. Feeling nervous!

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