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 » Thu Mar 28, 2019 6:46 pm

I will keep you posted! You do the same for me.
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 :(

Stewsbetty
Posts: 169
Joined: Thu Jul 14, 2016 7:08 am

Re: Starting immunotherapy next week

Postby Stewsbetty » Sun Mar 31, 2019 10:08 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?


Not sure what you ended up going with but I am in Keytruda and have been since September 2017. It took me from numerous lymph tumours -one 11cm- down to only 1 left, which is 1.7 cm.
I have had no real side effects to date and have been able to live a “normal” life. I returned to work. And on treatment days (about 1 hour) I am able to still grocery shop, make supper, visit friends, clean house. No real loss of energy.
I haven’t had any issue with driving travel. Haven’t been on a plane yet.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability to present
November 2018 CT shows only 1 small tumour left

Pyro
Posts: 230
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Starting immunotherapy next week

Postby Pyro » Sun Mar 31, 2019 9:16 pm

Stewsbetty 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?


Not sure what you ended up going with but I am in Keytruda and have been since September 2017. It took me from numerous lymph tumours -one 11cm- down to only 1 left, which is 1.7 cm.
I have had no real side effects to date and have been able to live a “normal” life. I returned to work. And on treatment days (about 1 hour) I am able to still grocery shop, make supper, visit friends, clean house. No real loss of energy.
I haven’t had any issue with driving travel. Haven’t been on a plane yet.

Beth


Your the poster child Beth, thanks for your posts, I feel like we are blazing a new road here and the docs don’t even have the answers. We are going to learn through trial and error.
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 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, CEA @36, treatment failure

FindTheBestHelp
Posts: 91
Joined: Mon Jul 14, 2014 12:13 am

Re: Starting immunotherapy next week

Postby FindTheBestHelp » Wed Apr 03, 2019 7:53 pm

I'm really glad it's working well for you Beth, as it gives hope to others. Thanks for your replies Beth and everyone!

Still deciding whether to try Opdivo + Yervoy or just go with Keytruda alone. It's a tough decision because of not wanting to come short of doing enough to give a fighting chance at greater longevity and not wanting to do too much for questionable gain at the cost of quality of life due to potential greater toxicity and the impact of that on organs and what not.

Reviresco
Posts: 22
Joined: Mon Mar 26, 2018 3:47 pm
Contact:

Re: Starting immunotherapy next week

Postby Reviresco » Wed Jun 12, 2019 12:20 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.


Hi Boxhill, sorry that did not respond to your comments on this thread I started about immunotherapy experiences (specifically Opdivo and Yervoy). The past few months have been crazy and I haven’t been active on the board.

Congratulations on your recent scan! Looks like Keytruda is doing the job for you! That is awesome. I wish you continued success and NED status.

Just before I was going to start immunotherapy, my doctors and I changed course. We decided to do a second resection of my liver. That decision was made because my scans showed only one small tumor (2cm), and it was in an easy spot to resect (not that liver resection is ever “easy”).

The surgery was on May 9. It went well and my recovery has been fairly easy compared to my first resection last November – a much longer and more complex surgery. The plan now is to scan every three months, and start immunotherapy if I have a recurrence. I know I’m incredibly lucky that I was a surgical candidate one time, let alone twice. So I’m hoping for clean scans in August.

To your point about single agent PD1 inhibitors (Keytruda or Opdivo monotherapy) vs. combination PD1 and CTLA4 therapy (Opdivo plus Yervoy), the emerging clinical data seems to demonstrate better PFS and OS for the combo therapy, although as we know, monotherapy has been life-extending and even curative in many MSI-H/ dMMR stage IVs.

Some oncologists favor monotherapy, because of the higher toxicity profile of the combo (around 30 percent will experience a grade 3 or 4 adverse immune event such as colitis or pneumonitis on the currently recommended dosing schedule). Some oncologists recommend the combo therapy in select cases (including mine) because of the clinical data; ongoing success with their patients; and because the adverse immune events are almost always reversible with steroids. The benefits of the combo apparently remain durable even in the patients who don’t complete four cycles. My oncologists think the higher toxicity is worth the “double punch”, especially because I’m relatively young (42) and otherwise very healthy. Also, the latest results of the Checkmate trials could lead to a different dosing schedule for Yervoy, which could lower toxicity. Something to keep an eye on, for sure.

Here are a few links that I’ve kept in my bookmarks. Keep fighting!

Trevor

https://www.practiceupdate.com/content/ ... ncer/75457

http://theoncologypharmacist.com/top-is ... cancer-top

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6527887/
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot, 1.5 cm. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver. 2 cm met in left lobe. CEA <0.5
4/9/19 Second liver resection
6/5/19 CEA 2.2. Next scans in August.


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