Starting immunotherapy next week

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teri3
Posts: 405
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: 92
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: 305
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- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Be_The_Sunshine
Posts: 14
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: 351
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
2019 NED

User avatar
henry123
Posts: 218
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
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

FindTheBestHelp
Posts: 92
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: 92
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: 305
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- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

User avatar
henry123
Posts: 218
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
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

boxhill
Posts: 789
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 hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

FindTheBestHelp
Posts: 92
Joined: Mon Jul 14, 2014 12:13 am

Re: Starting immunotherapy next week

Postby FindTheBestHelp » Fri Mar 22, 2019 3:43 pm

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?

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Starting immunotherapy next week

Postby boxhill » Sat Mar 23, 2019 6:59 pm

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.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Starting immunotherapy next week

Postby AppleTree » Sat Mar 23, 2019 8:56 pm

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.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: Starting immunotherapy next week

Postby brokenwings » Thu Mar 28, 2019 3:04 am

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
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.


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