Can anyone share their stories on immunotherapy? Good, Bad, ugly……

Zillions of these stories have already been posted. (It's pretty easy to search the site for more info if you'd like.) Some folks have a very difficult time with side effects. Some have little to no problems. Some have moderate problems. Some go on disability….some continue to work. Some respond rapidly…some have to struggle through and wait….trying to find out if their response will still be attained…just a bit later. "Be patient with the patient."….had become a message from researchers in melanoma to other oncs regarding immunotherapy. Ipi is the bad boy in regard to side effects. Both anti-PD1 products have a very similar response rates and side effect profiles…better and less difficult generally…respectively, than ipi. The combo produces still better responses, but also with greater risk of side effects. I would say most (from reading a great deal of reports and personal observation in the infusion clinic of a 2 1/2 year of a nivo/opdivo trial) do not need ports. However, for others, if needed, a port can be a real help in the process.  Response rates are roughly 40% for both anti-PD1 products, about 15% for ipi, the ipi/nivo combo produces about a 53% response rate.

Here is a post I have put up before that I put together some time ago…but it is still pretty good regarding how immunotherapy works and the most common side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

Sadly, as more folks take immunotherapy…the more odd and unfortunate side effects some have suffered. I just posted a 4th installment of that that on my blog. Luckily, those more difficult side effects are pretty rare and too…as more of us take these drugs…the docs are learning more about how to handle them….with rapid response being the most beneficial.

I wish you well in whatever you and your husband decide.  Celeste

Zillions of these stories have already been posted. (It's pretty easy to search the site for more info if you'd like.) Some folks have a very difficult time with side effects. Some have little to no problems. Some have moderate problems. Some go on disability….some continue to work. Some respond rapidly…some have to struggle through and wait….trying to find out if their response will still be attained…just a bit later. "Be patient with the patient."….had become a message from researchers in melanoma to other oncs regarding immunotherapy. Ipi is the bad boy in regard to side effects. Both anti-PD1 products have a very similar response rates and side effect profiles…better and less difficult generally…respectively, than ipi. The combo produces still better responses, but also with greater risk of side effects. I would say most (from reading a great deal of reports and personal observation in the infusion clinic of a 2 1/2 year of a nivo/opdivo trial) do not need ports. However, for others, if needed, a port can be a real help in the process.  Response rates are roughly 40% for both anti-PD1 products, about 15% for ipi, the ipi/nivo combo produces about a 53% response rate.

Here is a post I have put up before that I put together some time ago…but it is still pretty good regarding how immunotherapy works and the most common side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

Sadly, as more folks take immunotherapy…the more odd and unfortunate side effects some have suffered. I just posted a 4th installment of that that on my blog. Luckily, those more difficult side effects are pretty rare and too…as more of us take these drugs…the docs are learning more about how to handle them….with rapid response being the most beneficial.

I wish you well in whatever you and your husband decide.  Celeste

Zillions of these stories have already been posted. (It's pretty easy to search the site for more info if you'd like.) Some folks have a very difficult time with side effects. Some have little to no problems. Some have moderate problems. Some go on disability….some continue to work. Some respond rapidly…some have to struggle through and wait….trying to find out if their response will still be attained…just a bit later. "Be patient with the patient."….had become a message from researchers in melanoma to other oncs regarding immunotherapy. Ipi is the bad boy in regard to side effects. Both anti-PD1 products have a very similar response rates and side effect profiles…better and less difficult generally…respectively, than ipi. The combo produces still better responses, but also with greater risk of side effects. I would say most (from reading a great deal of reports and personal observation in the infusion clinic of a 2 1/2 year of a nivo/opdivo trial) do not need ports. However, for others, if needed, a port can be a real help in the process.  Response rates are roughly 40% for both anti-PD1 products, about 15% for ipi, the ipi/nivo combo produces about a 53% response rate.

Here is a post I have put up before that I put together some time ago…but it is still pretty good regarding how immunotherapy works and the most common side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

Sadly, as more folks take immunotherapy…the more odd and unfortunate side effects some have suffered. I just posted a 4th installment of that that on my blog. Luckily, those more difficult side effects are pretty rare and too…as more of us take these drugs…the docs are learning more about how to handle them….with rapid response being the most beneficial.

I wish you well in whatever you and your husband decide.  Celeste

Hello Rita and Charles,

Melanoma in brain, lungs, liver, gall bladder and adrenal gland. Ippi/nivo combo started Jan. 2012.

3 Cyber Knifes to brain, 2 cranitoriums taking out 28 pcs. of brain.

Itched constantly from treatment for 2 years.

Cancer free since Aug. 2012. Lost pituitary, adrenal and thyroid glands. I have to take 2 pills each day.

Still suffer from loss of stamina but I'm cancer free.

Best wishes for both of you.

Hello Rita and Charles,

Melanoma in brain, lungs, liver, gall bladder and adrenal gland. Ippi/nivo combo started Jan. 2012.

3 Cyber Knifes to brain, 2 cranitoriums taking out 28 pcs. of brain.

Itched constantly from treatment for 2 years.

Cancer free since Aug. 2012. Lost pituitary, adrenal and thyroid glands. I have to take 2 pills each day.

Still suffer from loss of stamina but I'm cancer free.

Best wishes for both of you.

Hello Rita and Charles,

Melanoma in brain, lungs, liver, gall bladder and adrenal gland. Ippi/nivo combo started Jan. 2012.

3 Cyber Knifes to brain, 2 cranitoriums taking out 28 pcs. of brain.

Itched constantly from treatment for 2 years.

Cancer free since Aug. 2012. Lost pituitary, adrenal and thyroid glands. I have to take 2 pills each day.

Still suffer from loss of stamina but I'm cancer free.

Best wishes for both of you.

Hello Rita and Charles,

Melanoma in brain, lungs, liver, gall bladder and adrenal gland. Ippi/nivo combo started Jan. 2012.

3 Cyber Knifes to brain, 2 cranitoriums taking out 28 pcs. of brain.

Itched constantly from treatment for 2 years.

Cancer free since Aug. 2012. Lost pituitary, adrenal and thyroid glands. I have to take 2 pills each day.

Still suffer from loss of stamina but I'm cancer free.

Best wishes for both of you.

Hello Rita and Charles,

Melanoma in brain, lungs, liver, gall bladder and adrenal gland. Ippi/nivo combo started Jan. 2012.

3 Cyber Knifes to brain, 2 cranitoriums taking out 28 pcs. of brain.

Itched constantly from treatment for 2 years.

Cancer free since Aug. 2012. Lost pituitary, adrenal and thyroid glands. I have to take 2 pills each day.

Still suffer from loss of stamina but I'm cancer free.

Best wishes for both of you.

Hello Rita and Charles,

Melanoma in brain, lungs, liver, gall bladder and adrenal gland. Ippi/nivo combo started Jan. 2012.

3 Cyber Knifes to brain, 2 cranitoriums taking out 28 pcs. of brain.

Itched constantly from treatment for 2 years.

Cancer free since Aug. 2012. Lost pituitary, adrenal and thyroid glands. I have to take 2 pills each day.

Still suffer from loss of stamina but I'm cancer free.

Best wishes for both of you.

Hi Rita,

As always, Celeste has provided a comprehensive overview, and just about every topic imaginable has been discussed here.  Including the issue of port or no port.  I would just add that the overwhelming feedback is yes to a port, if you anticipate regular blood tests and infusions in your future.  The installation procedure is simple and straightforward, with little or no side-effects or discomfort.  Once I understood the process, and had questions answered it was a no-brainer for me.  I remain so happy I did it.  I was so tired of being "stuck", often by newbie technicians doing blood draws who would "miss" repeatedly.  And now, when I go for treatment and tell the nurse I have a port, you can see them smile as you have made the entire process so much easier and more effective.  The only downside I can think of is that if you ever stop treatments, the port needs to be "serviced" every 3 weeks or so.  If you become sure someday, you no longer want, or need it, it can be removed as simply as it was installed.

Gary

Hi Rita,

As always, Celeste has provided a comprehensive overview, and just about every topic imaginable has been discussed here.  Including the issue of port or no port.  I would just add that the overwhelming feedback is yes to a port, if you anticipate regular blood tests and infusions in your future.  The installation procedure is simple and straightforward, with little or no side-effects or discomfort.  Once I understood the process, and had questions answered it was a no-brainer for me.  I remain so happy I did it.  I was so tired of being "stuck", often by newbie technicians doing blood draws who would "miss" repeatedly.  And now, when I go for treatment and tell the nurse I have a port, you can see them smile as you have made the entire process so much easier and more effective.  The only downside I can think of is that if you ever stop treatments, the port needs to be "serviced" every 3 weeks or so.  If you become sure someday, you no longer want, or need it, it can be removed as simply as it was installed.

Gary

Hi Rita,

As always, Celeste has provided a comprehensive overview, and just about every topic imaginable has been discussed here.  Including the issue of port or no port.  I would just add that the overwhelming feedback is yes to a port, if you anticipate regular blood tests and infusions in your future.  The installation procedure is simple and straightforward, with little or no side-effects or discomfort.  Once I understood the process, and had questions answered it was a no-brainer for me.  I remain so happy I did it.  I was so tired of being "stuck", often by newbie technicians doing blood draws who would "miss" repeatedly.  And now, when I go for treatment and tell the nurse I have a port, you can see them smile as you have made the entire process so much easier and more effective.  The only downside I can think of is that if you ever stop treatments, the port needs to be "serviced" every 3 weeks or so.  If you become sure someday, you no longer want, or need it, it can be removed as simply as it was installed.

Gary

I am in the UK. I had Ipi (3 mg/kg) as an outpatient. Two hours + variable waiting time in a day-treatment clinic four times, three weeks apart. Just a simple infusion. One blood test in between each treatment when I went to the cliinic to see my oncologist.

I got rash and diarrhoea (contolled with hydrocortisone cream and Imodium). Then, after the fourth and last treatment, my antierior pituitary was affected and I am like John, no anterior pituitary function and thereforre no thyroid or adrenal gland function. Like John. I take two pills each morning and I cannot do as much as I used to.

I also has a reoccurence of the rash (lasted a month) and the diarrhoea (lasted five weeks) two months after I finished the treatment.

It was tricky getting the coristol replacement dose right. but I take 8mg predinolosone a day and it suits me just fine. There are other steroid-replacement drugs but prednisolone siuits me.

One year on – cannot detect the tumors using a CT scan.

I am in the UK. I had Ipi (3 mg/kg) as an outpatient. Two hours + variable waiting time in a day-treatment clinic four times, three weeks apart. Just a simple infusion. One blood test in between each treatment when I went to the cliinic to see my oncologist.

I got rash and diarrhoea (contolled with hydrocortisone cream and Imodium). Then, after the fourth and last treatment, my antierior pituitary was affected and I am like John, no anterior pituitary function and thereforre no thyroid or adrenal gland function. Like John. I take two pills each morning and I cannot do as much as I used to.

I also has a reoccurence of the rash (lasted a month) and the diarrhoea (lasted five weeks) two months after I finished the treatment.

It was tricky getting the coristol replacement dose right. but I take 8mg predinolosone a day and it suits me just fine. There are other steroid-replacement drugs but prednisolone siuits me.

One year on – cannot detect the tumors using a CT scan.

I am in the UK. I had Ipi (3 mg/kg) as an outpatient. Two hours + variable waiting time in a day-treatment clinic four times, three weeks apart. Just a simple infusion. One blood test in between each treatment when I went to the cliinic to see my oncologist.

I got rash and diarrhoea (contolled with hydrocortisone cream and Imodium). Then, after the fourth and last treatment, my antierior pituitary was affected and I am like John, no anterior pituitary function and thereforre no thyroid or adrenal gland function. Like John. I take two pills each morning and I cannot do as much as I used to.

I also has a reoccurence of the rash (lasted a month) and the diarrhoea (lasted five weeks) two months after I finished the treatment.

It was tricky getting the coristol replacement dose right. but I take 8mg predinolosone a day and it suits me just fine. There are other steroid-replacement drugs but prednisolone siuits me.

One year on – cannot detect the tumors using a CT scan.

Dear Rita and Charles,

my father (stage IV), has been on Keytruda since the end of January this year, no side effects what so ever, his first pet scan was last week, we have to wait another week to get results… His last app with his onco was very incouraging, his biggest visible tumor 5x5cm is down to 0.5cm and the smaller one dissapeared… We are keeping our fingers crossed that his two lung mets have responded as well as his subcutaneous ones did…

He feels great and is really thankefull that he got the help he desperately needed ( he thought his only option was chemo – did not want to go through that)

So hang in there guys, believe that it will work for you (like it has for many many others)!

praying for all of us!!

Patrisa

Dear Rita and Charles,

my father (stage IV), has been on Keytruda since the end of January this year, no side effects what so ever, his first pet scan was last week, we have to wait another week to get results… His last app with his onco was very incouraging, his biggest visible tumor 5x5cm is down to 0.5cm and the smaller one dissapeared… We are keeping our fingers crossed that his two lung mets have responded as well as his subcutaneous ones did…

He feels great and is really thankefull that he got the help he desperately needed ( he thought his only option was chemo – did not want to go through that)

So hang in there guys, believe that it will work for you (like it has for many many others)!

praying for all of us!!

Patrisa

Dear Rita and Charles,

my father (stage IV), has been on Keytruda since the end of January this year, no side effects what so ever, his first pet scan was last week, we have to wait another week to get results… His last app with his onco was very incouraging, his biggest visible tumor 5x5cm is down to 0.5cm and the smaller one dissapeared… We are keeping our fingers crossed that his two lung mets have responded as well as his subcutaneous ones did…

He feels great and is really thankefull that he got the help he desperately needed ( he thought his only option was chemo – did not want to go through that)

So hang in there guys, believe that it will work for you (like it has for many many others)!

praying for all of us!!

Patrisa