Anyone have experience with OPDIVO?

13

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Sandy3185 said:

    Moffitt

    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

    Sandy and I have the same

    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

  • BabyCoach
    BabyCoach Member Posts: 95
    edited June 2016 #43
    Ingrid & Anne

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

  • Ocalagal99
    Ocalagal99 Member Posts: 29
    TOMORROW, TOMORROW......

    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
    EZLiving66 Member Posts: 1,476 Member

    TOMORROW, TOMORROW......

    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!

    Oh, I laughed when I read it

    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
    Kvdyson Member Posts: 789
    edited June 2016 #46

    TOMORROW, TOMORROW......

    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!

    Shingles

    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

  • brissance
    brissance Member Posts: 192
    YUK

    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
    Ocalagal99 Member Posts: 29
    edited June 2016 #48
    Off Again!

    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!

  • Kvdyson
    Kvdyson Member Posts: 789
    3rd treatment update

    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?

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member

    Off Again!

    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!

    Hot!

    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

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member
    edited February 2017 #51
    Lisa C said:

    Waiting for approval to start opdivo in a clinical trial

    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!

    Lisa, welcome.  We have

    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
    Lisa C Member Posts: 3
    Waiting for approval to start opdivo in a clinical trial

    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!

  • Lou Ann M
    Lou Ann M Member Posts: 996
    Lisa

    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
    Lisa C Member Posts: 3

    Lisa, welcome.  We have

    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!)  

    Thank you for responding to

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

  • Lisa C
    Lisa C Member Posts: 3
    edited February 2017 #55
    Thank you for your quick

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

  • KTMay
    KTMay Member Posts: 25
    Also saw Dr. Chon and questions re Opdivo/Keytruda

    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   

  • KTMay
    KTMay Member Posts: 25
    edited February 2017 #57
    Interest in Moffitt patients/consults

    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

  • Lou Ann M
    Lou Ann M Member Posts: 996
    KTMay said:

    Also saw Dr. Chon and questions re Opdivo/Keytruda

    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   

    Doxil

    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

  • Unknown
    edited March 2017 #59
    Opdivo

    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
    SandyD Member Posts: 130
    unknown said:

    Opdivo

    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.

    Welcome to this board

    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
    Nellasing Member Posts: 528
    unknown said:

    Opdivo

    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.

    Welcome miyoshibarosh

    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)))