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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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Lisa, welcome.  We have another gyn warrior, the unsinkable Lou Ann who I hope will be chiming in.  She is taking Keytruda, another form of immunotherapy.  I heard a television commercial for Keytruda for the first time today (I think I spelled it right - Lou Ann -  please correct me if I am wrong!)  

Lisa C
Posts: 3
Joined: Feb 2017

Thank you for responding to me! I will keep you posted. Glad to have found you ladies. It can be a lonely ride!!❤

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

welcome to the club that no one wants to belong to.  This is a good place to come. Wonderful ladies.  I am not on Opdiv, but another immunotherapy drug called Keytruda.  I will be getting my 9th infusion tomorrow.  My oncologist choose Keytruda instead of Opdivo because Keytruda is given every three weeks and Opdivo every two.  They are very similar.  So far I have had very few side effects and most of the time I feel better than I have for a very long time.  Immunotherapy is different from chemo in a number of ways.  The first CT scan showed shrinkage everywhere, the second everything remained the same, except for one nasty tumor in my neck that grew.  It grew over some nerves and was causing a lot of pain so I just finished ten radiation treatments.  I am not disappointed with how Things are going and neither is my oncologist.  It has given me over six months of pretty high quality life that I wasn't expecting to have..  

Hugs and prayers, Lou Ann

Lisa C
Posts: 3
Joined: Feb 2017

Thank you for your quick response! I will keep you ladies posted as soon as I get started. 

KTMay
Posts: 25
Joined: Nov 2016

I also visited with Dr. Chon last November for a second opinion after carbo/taxol did not work for me. CT/PET scans showed growth throughout pelvic and stomach lymph nodes, perioneatal lining and omentum. She recommended doxil + avastin and I will do third cycle this week. I have been told Keytruda is not an option for me because I do not show a PD-L1 receptor on the Caris molecular intelligence report. So I was wondering Ocalagal if you used any kind of molecular analysis to determine that Opdivo was potentially a good fit for you. I was told by onc there is a risk that if certain receptors are not present, these treatments can actually have a high risk of harming your organs. For the others who have used doxil, what has been the outcome for you all?  Doesn't sound very promising and that I may be "researching" next treatments again come May. Any instances of "success" with doxil from this board?  And like the others very interested in experiences with Opdivo. Also to continue to share what recommendations we Floridians are getting from Moffitt.  K   

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I was on Doxil for 7 rounds.  It did work on some smaller tumors, but let larger one grow.  Ended up with open bowel resection and lost 42 cm. of intestines because a tumor intwined itself betwine my intestines causing a complete bowel blockage.  Also had a lot of unpredictable side effects from it.  I had good results from Avastin, but after 2 it caused a minor heart attack.  I am currently on Keytruda. No major side effects yet.  It has given me 7 months of life that I had not expected.

Hugs and Prayers, Lou Ann

KTMay
Posts: 25
Joined: Nov 2016

I posted this interest under the recent Opdivo stream but thought I would pull it out as a separate discussion for those of us in Florida using Moffitt. I too saw Dr Chon for a second opinion last November and plan to continue to use Moffitt for consults since I am a Floridian. After carbo/taxol did not work for me (stage 3 UPSC) Dr. Chon recommended Doxil + avastin 28 day cycle for doxil and 15 for avastin and I will do third cycle this week. Reading the posts, I gather I should not be surprised if doxil is not the answer and come May I may be considering what next? I wondered if any of you ladies using Moffitt have looked at their clinical trials? Do you all have any good experiences with other chemos besides carbo/taxol or doxil?  K

Anonymous user (not verified)

I've been through all 6 rounds of Opdivo.  I had a radical hysterectomy and ablation: stage IV Uterus Endometrial Adenocarcinoma Papillary Serous.  About 2 years after surgery (7 weeks ago) my CA-125 went up and a CT scan confirmed "pelvic ascites."  After 4 rounds of Opdivo, my CA-125 was still going up but a little slower--the second CT scan showed no pelvic ascites but splenic lesions and nodules and "pelvic soft tissue nodularity concerning for peritoneal carcinomatosis."  My CA-125 numbers still climbing so I am very very worried.  My doctor warned me that it takes time for the Opdivo to work, but waiting to see if Opdivo helped has been overwhelming--it has been very hard to trust my doctor and I still have to wait another week for the next CT scan to see what happened.

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

So sorry for all you're dealing with. That's really, really lousy! Hope you're beginning to see some results from the Opdivo. Let us know how you're doing. Sending love and healing vibes.

Nellasing
Posts: 529
Joined: Oct 2016

I didn't respond because I haven't had any history with Opdivo but do want you to know that we are all pulling for you and hoping that your next CT shows improvement!  You mentioned it has been very hard to trust your Dr.  Perhaps it is time to get a second opinion if you feel you aren't being cared for appropriately??  At any rate just know we are here and await your update.   (((HUGS)))

Stillalive18
Posts: 1
Joined: Feb 2018

I have restage Lung cancer metastasized into bones. Last week I received my 41st dose of Opdivo. (I had already had 1round radiation & 2 rounds chemo for primary non small cell lung cancer). I wouldn't survive a 3rd round of Taxol based chemo so my Onc. ( who helped invent Opdivo) suggested Opdivo. I have yet to show any side effects that are negative. I have energy stamina etc. All scans since starting Opdivo have shown significant shrinking of restage cancer. I'm pleased with the results so far. Please remember that everybody's bodies are different so results vary with Opdivo treatment.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Thank you, Stillalive18.  Opdivo is marketed as for lung cancer, so it if is working that is fantastic.  Some of the women here who have also had it for uterine cancer haven't posted for awhile (Ocalagal? - where are you?) and sadly, we lost AWK (Anne).  Of course, our Lou Ann has had Keytruda and has done well but has been struggling lately.

I hope they find a immunotherapy treatment that really can work for all.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2593
Joined: Mar 2013

Dang - I must have hit SUBMIT twice

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