Ipi/Nivo did not work

Can you provide more history?  From your profile it isn't clear that your cancer had metastisized.

(I have been away from the site for awhile, sorry for the lack of updates.)

i wanted to chime in here. I was on Ipi/Nivo for six months. I had slow, but steady progression. My clinic just started as part of the Lenvatinib plus Pembrolizumab clinical trial (https://clinicaltrials.gov/ct2/show/NCT02501096). I had my six week scan (after two cycles) and it seems to be working. Maybe it’s something you could look into. Good luck.

Manufred said:

Worked for me

I am a poster boy for Ipi/Nivo.  Full details on my Profile Page.

Sorry it has not given you the same outcome.

Best Wishes, Fred

Dear Manufred,

  Thank you for posting your success with Nivo. My hubby has been getting infusions of it for the past 6 1/2 months with no side effects (so far anyway). 

My question is that he does say he has pain in his two tumor sites ( he only has two tumors in his spine as of now). I wanted to know if you ever experienced tumor pain and/or if you know anything or anyone who also had that with good results. Our oncology radiationist said he thinks its a sign that the tumors are being attacked by the Nivo and dying (we go back for more scans in June, but being impatient just wanted some info and maybe some hope).

Thanks for being here. Sincerely-Marilyn

Bellafelice said:

Dear Manufred,

Dear Manufred,

  Thank you for posting your success with Nivo. My hubby has been getting infusions of it for the past 6 1/2 months with no side effects (so far anyway). 

My question is that he does say he has pain in his two tumor sites ( he only has two tumors in his spine as of now). I wanted to know if you ever experienced tumor pain and/or if you know anything or anyone who also had that with good results. Our oncology radiationist said he thinks its a sign that the tumors are being attacked by the Nivo and dying (we go back for more scans in June, but being impatient just wanted some info and maybe some hope).

Thanks for being here. Sincerely-Marilyn

Marilyn,

I never experienced any real pain throughout my whole cancer journey.  I did on occasion get little niggles throughout my abdomen where I thought some of my tumours may have been, but the doctors did not think they were anything real.  But then, I did not have any bone mets at all, only in my pancreas, a few lymph nodes and some on the peritoneum.

Some of the niggles (not really pain, just more of a tingling sensation) were on my ribs, where I did not have any identified mets.  Maybe Ipi or Nivo like tingling bone cells.

I hope the tumours and the pain both go away in time.

Best Wishes, Fred

Manufred said:

No Pain

Marilyn,

I never experienced any real pain throughout my whole cancer journey.  I did on occasion get little niggles throughout my abdomen where I thought some of my tumours may have been, but the doctors did not think they were anything real.  But then, I did not have any bone mets at all, only in my pancreas, a few lymph nodes and some on the peritoneum.

Some of the niggles (not really pain, just more of a tingling sensation) were on my ribs, where I did not have any identified mets.  Maybe Ipi or Nivo like tingling bone cells.

I hope the tumours and the pain both go away in time.

Best Wishes, Fred

Dear Manufred,

  Thanks so much for your caring reply. I wish you many more healthy and happy days!!
With gratitude-Marilyn