Anyone have experience with OPDIVO?

24

Comments

  • Soup52
    Soup52 Member Posts: 908 Member
    #22
    Very interesting! I am 3c

    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! 

  • Unknown
    Unknown
    #23
    Soup52 said:

    Very interesting! I am 3c

    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! 

    Hi Soup

    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

  • Soup52
    Soup52 Member Posts: 908 Member
    edited May 2016 #24
    Thanks Nancy! So far I'm not

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

  • Ocalagal99
    Ocalagal99 Member Posts: 29
    #25
    Just had my Second Treatment!

    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

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #26
    Ingrid, Thanks for posting

    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

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #27
    Ocalagal99 said:

    Just had my Second Treatment!

    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

    Thank you!

    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
    Ocalagal99 Member Posts: 29
    #28
    Ocalagal99 said:

    Just had my Second Treatment!

    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

    So had my second treatment

    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

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #29
    Ocalagal99 said:

    So had my second treatment

    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

    Ingrid, I hope it clears up

    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
    Ocalagal99 Member Posts: 29
    #30
    TeddyandBears_Mom said:

    Ingrid, I hope it clears up

    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

    Hi, Cindi, no other side

    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

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    edited May 2016 #31
    Ocalagal99 said:

    Hi, Cindi, no other side

    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

    I'm following this too,

    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

  • Unknown
    Unknown
    #32
    Ocalagal99 said:

    So had my second treatment

    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

    Interesting about the rash

    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

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #33
    Ocalagal99 said:

    So had my second treatment

    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

    Following

    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?

  • christine8822
    christine8822 Member Posts: 40 Member
    edited May 2016 #34
    we're following! keep us posted

    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. 

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #35
    Interested

    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
    Ocalagal99 Member Posts: 29
    #36
    Kvdyson said:

    Following

    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?

    Hi, Kydyson,will be getting a

    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

  • Ocalagal99
    Ocalagal99 Member Posts: 29
    #37
    History of treatments

    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

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #38
    Ocalagal99 said:

    History of treatments

    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

    Moffitt

    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

  • Editgrl
    Editgrl Member Posts: 903 Member
    #39
    Ocalagal99 said:

    History of treatments

    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

    Thank you

    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!

  • Ocalagal99
    Ocalagal99 Member Posts: 29
    edited May 2016 #40
    Kvdyson said:

    Moffitt

    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

    Moffitt

    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

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    edited May 2016 #41
    Kvdyson said:

    Moffitt

    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

    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

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