Starting immunotherapy next week

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Timothybup
Posts: 1
Joined: Sun Mar 03, 2019 12:25 am
Facebook Username: Timothybup
Location: Denmark
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Starting immunotherapy next week

Postby Timothybup » Sat Mar 09, 2019 8:59 am

Hi everyoneAs the title says, is there anything you recommend i should do/read up on before i start my part 2 at the end of next week?Thanks in advanceNick

teri3
Posts: 402
Joined: Fri Jan 09, 2015 11:03 am

Re: Starting immunotherapy next week

Postby teri3 » Sun Mar 10, 2019 7:31 am

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
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

FindTheBestHelp
Posts: 72
Joined: Mon Jul 14, 2014 12:13 am

Re: Starting immunotherapy next week

Postby FindTheBestHelp » Sun Mar 10, 2019 5:22 pm

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?

Pyro
Posts: 89
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Starting immunotherapy next week

Postby Pyro » Sun Mar 10, 2019 7:25 pm

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.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe removed, PVE
May 2016 - 70% of liver removed
Jun 2016-Radiation
Jan 2017-permanent colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Radiation
Mar 2019 - Keytruda, CEA @10

Be_The_Sunshine
Posts: 12
Joined: Wed Mar 06, 2019 10:23 am
Location: Glasgow, Scotland, UK

Re: Starting immunotherapy next week

Postby Be_The_Sunshine » Sun Mar 10, 2019 8:01 pm

Hi

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

Best Wishes
Can't find the Sunshine, Be the Sunshine

2010 = Age 37, Stage 3 Breast Cancer called (Her2+) L mastectomy with 18mths of IV chemo/Herceptin & 5years of meds.

FEB 2019 = colonoscopy Age 46[
* Distal Sigmoid 1 x Pedunculated Polyp (1p) 10mm (results are 15th march 2019 - benign)

* Feb 2019 Rectum 1 x Sessile (Flat) polyp (IIc) 12mm - Removed 15th Mar 2019 awaiting full results but do know this from biopsy - TVA with low grade dysplasia' and (Is, pit type IIIL )

plastikos
Posts: 326
Joined: Wed Jan 14, 2015 6:09 am

Re: Starting immunotherapy next week

Postby plastikos » Mon Mar 11, 2019 2:54 am

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.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED

henry123
Posts: 165
Joined: Sun Oct 08, 2017 3:25 am

Re: Starting immunotherapy next week

Postby henry123 » Mon Mar 11, 2019 1:22 pm

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.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

FindTheBestHelp
Posts: 72
Joined: Mon Jul 14, 2014 12:13 am

Re: Starting immunotherapy next week

Postby FindTheBestHelp » Sun Mar 17, 2019 7:10 pm

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?

FindTheBestHelp
Posts: 72
Joined: Mon Jul 14, 2014 12:13 am

Re: Starting immunotherapy next week

Postby FindTheBestHelp » Sun Mar 17, 2019 7:13 pm

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.

Pyro
Posts: 89
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Starting immunotherapy next week

Postby Pyro » Sun Mar 17, 2019 7:42 pm

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.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe removed, PVE
May 2016 - 70% of liver removed
Jun 2016-Radiation
Jan 2017-permanent colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Radiation
Mar 2019 - Keytruda, CEA @10

henry123
Posts: 165
Joined: Sun Oct 08, 2017 3:25 am

Re: Starting immunotherapy next week

Postby henry123 » Mon Mar 18, 2019 6:47 am

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 .
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

boxhill
Posts: 189
Joined: Fri Apr 06, 2018 11:40 am

Re: Starting immunotherapy next week

Postby boxhill » Tue Mar 19, 2019 3:13 pm

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.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28/18
7/9/18 CT no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT same, Lung nodule likely calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression of nodes on FOLFOX
12/31/18 Keytruda


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