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Re: Starting immunotherapy next week

Posted: Sun Mar 10, 2019 7:31 am
by teri3
Good luck Reviresco!
Keep us updated. I slated to start the new TIL trial, I'm hoping sometime mid May. Im just waiting on my cells to finish their ninja training lol. Best of luck. I'll be watching for updates.
Teri

Re: Starting immunotherapy next week

Posted: Sun Mar 10, 2019 5:22 pm
by FindTheBestHelp
Hello, could those who have been on keytruda or mono immunotherapies of the like please chime in with your experiences based on the following?:

colon cancer was diagnosed about 4 years ago, surgery to remove the mass and total colectomy was performed followed by 6 months of folfox and was NED for like a year and a half (more like 2.5 years if you don't count CEA ticking upwards but still below 5.0). Last summer, after CEA went to 6.0+, PET scan found another mass in the abdominal region.. that was removed and following surgery and a scan months later, some cancer activity was found in the scans (areas lit up) in the pelvic region. Surgeon expressed that another surgery could be a rough experience, and some the cancer had metastasized masses could develop elsewhere right after the surgery anyway. The oncologist indicated the viable options would be chemo (although since there was a recurrence it's not believed that it will be as effective as desirable, and she would like to save it for down the road also), or immunotherapy (which she indicated good candidacy for).

the oncologist has recommended: pambra or Nivo - if quality of life is most important

she also indicated there is a combination of two immunotherapies but it's harsher on the body but seems to get even better responsive.

chemo + immunotherapy seems to be something some folks have tried but the oncologist said that would greatly impact quality of life, so if qualify of life is important she doesn't recommend that.

on one hand, going with chemo + immunotherapy or dual immunotherapies seems like it would have a better chance of longevity by killing off more cancer cells? but if for example chemo + immunotherapy doesn't work and causes more side effects and neuropathy, it could impact qualify of life that is of a finite amount of time.

guess there are no absolute answers or best paths, it seems rather individualized.

living as long as possible is the goal, with decent quality of life to make the added time worthwhile... wondering if one immunotherapy to start would be best and saving others for later? same for chemo?

Re: Starting immunotherapy next week

Posted: Sun Mar 10, 2019 7:25 pm
by Pyro
Its what I’m doing, I switched to Keytruda only after a long fight but chemo hadn’t failed me. It was just a good time to try it. Plus, Keytruya is was easier than any of the chemo cocktails so far.

Re: Starting immunotherapy next week

Posted: Sun Mar 10, 2019 8:01 pm
by Be_The_Sunshine
Hi

Just a wee message, such a lovely post, shall be keeping positive thoughts for your new treatment plan ahead

Best Wishes

Re: Starting immunotherapy next week

Posted: Mon Mar 11, 2019 2:54 am
by plastikos
FindTheBestHelp wrote:Hello, could those who have been on keytruda or mono immunotherapies of the like please chime in with your experiences based on the following?:

colon cancer was diagnosed about 4 years ago, surgery to remove the mass and total colectomy was performed followed by 6 months of folfox and was NED for like a year and a half (more like 2.5 years if you don't count CEA ticking upwards but still below 5.0). Last summer, after CEA went to 6.0+, PET scan found another mass in the abdominal region.. that was removed and following surgery and a scan months later, some cancer activity was found in the scans (areas lit up) in the pelvic region. Surgeon expressed that another surgery could be a rough experience, and some the cancer had metastasized masses could develop elsewhere right after the surgery anyway. The oncologist indicated the viable options would be chemo (although since there was a recurrence it's not believed that it will be as effective as desirable, and she would like to save it for down the road also), or immunotherapy (which she indicated good candidacy for).

the oncologist has recommended: pambra or Nivo - if quality of life is most important

she also indicated there is a combination of two immunotherapies but it's harsher on the body but seems to get even better responsive.

chemo + immunotherapy seems to be something some folks have tried but the oncologist said that would greatly impact quality of life, so if qualify of life is important she doesn't recommend that.

on one hand, going with chemo + immunotherapy or dual immunotherapies seems like it would have a better chance of longevity by killing off more cancer cells? but if for example chemo + immunotherapy doesn't work and causes more side effects and neuropathy, it could impact qualify of life that is of a finite amount of time.

guess there are no absolute answers or best paths, it seems rather individualized.

living as long as possible is the goal, with decent quality of life to make the added time worthwhile... wondering if one immunotherapy to start would be best and saving others for later? same for chemo?

Hi. Is your tumor MSI-H? I am assuming it is since your surgeon mentioned you are a candidate for immunotherapy. I would go with just inmunotherapy with a single agent and save other potentially more toxic combinations as a backup. Not an expert but as far as I know there’s no hard evidence yet to say any of the other combinations you mentioned (chemo + immuno, double agent immuno) have an advantage over just giving something like Pembrolizumab as a single agent at standard dosing. Hope this helps. Good luck.

Re: Starting immunotherapy next week

Posted: Mon Mar 11, 2019 1:22 pm
by henry123
Hello fellow Lynchie and opdivoite,
I pray that immunotherapy works out for you. Good to know that my input here is helping someone.
Do consider aspirin also with Nivolumab after talking to your oncologist.
As a side note, Nivolumab has been not too bad so far.

Re: Starting immunotherapy next week

Posted: Sun Mar 17, 2019 7:10 pm
by FindTheBestHelp
plastikos wrote:
FindTheBestHelp wrote:Hello, could those who have been on keytruda or mono immunotherapies of the like please chime in with your experiences based on the following?:

colon cancer was diagnosed about 4 years ago, surgery to remove the mass and total colectomy was performed followed by 6 months of folfox and was NED for like a year and a half (more like 2.5 years if you don't count CEA ticking upwards but still below 5.0). Last summer, after CEA went to 6.0+, PET scan found another mass in the abdominal region.. that was removed and following surgery and a scan months later, some cancer activity was found in the scans (areas lit up) in the pelvic region. Surgeon expressed that another surgery could be a rough experience, and some the cancer had metastasized masses could develop elsewhere right after the surgery anyway. The oncologist indicated the viable options would be chemo (although since there was a recurrence it's not believed that it will be as effective as desirable, and she would like to save it for down the road also), or immunotherapy (which she indicated good candidacy for).

the oncologist has recommended: pambra or Nivo - if quality of life is most important

she also indicated there is a combination of two immunotherapies but it's harsher on the body but seems to get even better responsive.

chemo + immunotherapy seems to be something some folks have tried but the oncologist said that would greatly impact quality of life, so if qualify of life is important she doesn't recommend that.

on one hand, going with chemo + immunotherapy or dual immunotherapies seems like it would have a better chance of longevity by killing off more cancer cells? but if for example chemo + immunotherapy doesn't work and causes more side effects and neuropathy, it could impact qualify of life that is of a finite amount of time.

guess there are no absolute answers or best paths, it seems rather individualized.

living as long as possible is the goal, with decent quality of life to make the added time worthwhile... wondering if one immunotherapy to start would be best and saving others for later? same for chemo?

Hi. Is your tumor MSI-H? I am assuming it is since your surgeon mentioned you are a candidate for immunotherapy. I would go with just inmunotherapy with a single agent and save other potentially more toxic combinations as a backup. Not an expert but as far as I know there’s no hard evidence yet to say any of the other combinations you mentioned (chemo + immuno, double agent immuno) have an advantage over just giving something like Pembrolizumab as a single agent at standard dosing. Hope this helps. Good luck.


Thanks for your reply. Yes, MSI-H. By the way, Pembrolizumab (Keytruda?) was chosen as the single agent, but the oncologist wrote back saying the pharmacy is suggesting Nivolumab. The oncologist didn't explain why, but maybe it's due to cost difference or that pembrolizumab would require special order?

In light of this, is one more effective/better than the other?

Re: Starting immunotherapy next week

Posted: Sun Mar 17, 2019 7:13 pm
by FindTheBestHelp
henry123 wrote:Hello fellow Lynchie and opdivoite,
I pray that immunotherapy works out for you. Good to know that my input here is helping someone.
Do consider aspirin also with Nivolumab after talking to your oncologist.
As a side note, Nivolumab has been not too bad so far.


Hi, I've heard that aspirin could be helpful for cancer patients, but I thought it was after chemo to help maybe avoid recurrence? Or is it for other times/purposes?

Also, just wondering if those of you here who have been on immunotherapy know whether it leaves you unable to travel or vacation due to its side effects? Ihear there's like almost a 50/50 chance you'll get diarreha. What if there are other complications? It'd be nice to be able to go out of state to visit some family while able bodied.

By the way, is there any reason pembro treatments would be every 3 weeks while nivolumab is every 2 weeks?

Thanks in advance.

Re: Starting immunotherapy next week

Posted: Sun Mar 17, 2019 7:42 pm
by Pyro
FindTheBestHelp wrote:
henry123 wrote:Hello fellow Lynchie and opdivoite,
I pray that immunotherapy works out for you. Good to know that my input here is helping someone.
Do consider aspirin also with Nivolumab after talking to your oncologist.
As a side note, Nivolumab has been not too bad so far.


Hi, I've heard that aspirin could be helpful for cancer patients, but I thought it was after chemo to help maybe avoid recurrence? Or is it for other times/purposes?

Also, just wondering if those of you here who have been on immunotherapy know whether it leaves you unable to travel or vacation due to its side effects? Ihear there's like almost a 50/50 chance you'll get diarreha. What if there are other complications? It'd be nice to be able to go out of state to visit some family while able bodied.

By the way, is there any reason pembro treatments would be every 3 weeks while nivolumab is every 2 weeks?

Thanks in advance.


I’ve only had 1 infusion of Keytruda, but it’s way easier than chemo so far. If this keeps up, I would definitely travel while on it.

Re: Starting immunotherapy next week

Posted: Mon Mar 18, 2019 6:47 am
by henry123
FindTheBestHelp wrote:
plastikos wrote:
FindTheBestHelp wrote:Hello, could those who have been on keytruda or mono immunotherapies of the like please chime in with your experiences based on the following?:

colon cancer was diagnosed about 4 years ago, surgery to remove the mass and total colectomy was performed followed by 6 months of folfox and was NED for like a year and a half (more like 2.5 years if you don't count CEA ticking upwards but still below 5.0). Last summer, after CEA went to 6.0+, PET scan found another mass in the abdominal region.. that was removed and following surgery and a scan months later, some cancer activity was found in the scans (areas lit up) in the pelvic region. Surgeon expressed that another surgery could be a rough experience, and some the cancer had metastasized masses could develop elsewhere right after the surgery anyway. The oncologist indicated the viable options would be chemo (although since there was a recurrence it's not believed that it will be as effective as desirable, and she would like to save it for down the road also), or immunotherapy (which she indicated good candidacy for).

the oncologist has recommended: pambra or Nivo - if quality of life is most important

she also indicated there is a combination of two immunotherapies but it's harsher on the body but seems to get even better responsive.

chemo + immunotherapy seems to be something some folks have tried but the oncologist said that would greatly impact quality of life, so if qualify of life is important she doesn't recommend that.

on one hand, going with chemo + immunotherapy or dual immunotherapies seems like it would have a better chance of longevity by killing off more cancer cells? but if for example chemo + immunotherapy doesn't work and causes more side effects and neuropathy, it could impact qualify of life that is of a finite amount of time.

guess there are no absolute answers or best paths, it seems rather individualized.

living as long as possible is the goal, with decent quality of life to make the added time worthwhile... wondering if one immunotherapy to start would be best and saving others for later? same for chemo?

Hi. Is your tumor MSI-H? I am assuming it is since your surgeon mentioned you are a candidate for immunotherapy. I would go with just inmunotherapy with a single agent and save other potentially more toxic combinations as a backup. Not an expert but as far as I know there’s no hard evidence yet to say any of the other combinations you mentioned (chemo + immuno, double agent immuno) have an advantage over just giving something like Pembrolizumab as a single agent at standard dosing. Hope this helps. Good luck.


Thanks for your reply. Yes, MSI-H. By the way, Pembrolizumab (Keytruda?) was chosen as the single agent, but the oncologist wrote back saying the pharmacy is suggesting Nivolumab. The oncologist didn't explain why, but maybe it's due to cost difference or that pembrolizumab would require special order?

In light of this, is one more effective/better than the other?


Nivo and Pembro arei n close race. I think nivo is more suitable for lynch cases though i can't give any references . it has worked great so far in my case .

Re: Starting immunotherapy next week

Posted: Tue Mar 19, 2019 3:13 pm
by boxhill
My oncologist presented my two immunotherapy options as keytruda alone, or Opdivo plus Yervoy. We went with keytruda because it is generally somewhat easier on the body.

From what I've read recently, stats show Keytruda clearly beating Opdivo, but Opdivo plus Yervoy works better than Opdivo alone. At least for some cancers, whether or not not Yervoy is added depends on BRAF status. Do you know yours?

I don't understand why a pharmacy would be dictating this choice.

Re: Starting immunotherapy next week

Posted: Fri Mar 22, 2019 3:43 pm
by FindTheBestHelp
boxhill wrote:My oncologist presented my two immunotherapy options as keytruda alone, or Opdivo plus Yervoy. We went with keytruda because it is generally somewhat easier on the body.

From what I've read recently, stats show Keytruda clearly beating Opdivo, but Opdivo plus Yervoy works better than Opdivo alone. At least for some cancers, whether or not not Yervoy is added depends on BRAF status. Do you know yours?

I don't understand why a pharmacy would be dictating this choice.


Did the oncoclogist tell you what the % differences were in response and potential longevity of going Keytruda route vs Opdivo plus Yervoy route? In other words, was it the case that the added toxicity could be relatively minimal and the potential gains in response and longevity could outweight that extra toxicity?

Re: Starting immunotherapy next week

Posted: Sat Mar 23, 2019 6:59 pm
by boxhill
No, we didn't discuss that specifically. It is my understanding that the 2-drug combo might have a slight advantage in response rate, like 53% vs 52% or thereabouts.

I suppose I could move on to that if keytruda doesn't work. Something to ask about. I figure it would likely depend on toxicity, but that's speculation on my part.

Re: Starting immunotherapy next week

Posted: Sat Mar 23, 2019 8:56 pm
by AppleTree
Just a note about traveling...because my rectum was removed, I sometimes am hit hard with the runs, when out and about. I always wear Depends when I go out. I have a zippered bag that I keep extra leggings, 2 Depends, wet wipes, 2-3 plastic bags, a pair of socks and a few RX pills for anti-diareah in last months bottle so it is labeled. This is to leave the house. 85% of the time I do not need it, but when I do, I really need it! For traveling, I pack more. I do not eat out. I pack my food and try to eat things that I know for sure agree with me. Fried food is a no no! Being female, if I am visiting family, I usually will take a shower immediately in order to help prevent bladder infections. I am going to Europe in a few weeks. Backpacks are perfect to haul this extra stuff. If you want to travel after a few treatments and seeing how you feel, if you are up to it, go for it.

Thinking of you as you start your new treatment plan.

Re: Starting immunotherapy next week

Posted: Thu Mar 28, 2019 3:04 am
by brokenwings
teri3 wrote:Good luck Reviresco!
Keep us updated. I slated to start the new TIL trial, I'm hoping sometime mid May. Im just waiting on my cells to finish their ninja training lol. Best of luck. I'll be watching for updates.
Teri


That's great! Best of lucks!! Could you keep up posted?

Hugs