very discouraged with this cancer business

Please feel free to read, share your thoughts, your stories and connect with others!
Stewsbetty
Posts: 96
Joined: Thu Jul 14, 2016 7:08 am

very discouraged with this cancer business

Postby Stewsbetty » Sat Jul 29, 2017 1:18 am

Hey all,

I am going to tell some of my story and gripe and vent a bit. This is hard to do with friends and family sometimes because I don't want to lay a heavier burden on them.

I was diagnosed June 2016 and had a right hemicolectomy. I was staged 3b or 3c (I have 2 different reports one saying 6 of 10 LN positive and 1 saying 10 of 16). I followed prescribed treatments Folfox 12 rounds and kind of expected to hear the "good job and you're done" at the end. I didn't get that - just sent for a PET to check on a LN that they were watching throughout treatment. On Feb 28 it was measuring 13mm. It was cancerous. Oncologist recommended surgery (beginning of May). Didn't get to see surgeon until the end of June. He said to plan for surgery at the end of August (mentioned the slow growing nature of CC). I had a CT mid July and that LN has grown to a mass of 7x7x5cm and there is spread to several more LNs. Today I got a call that there is a fistula between the tumour and the duodenum. No idea what the plan will be going forward from this. My oncologist is presenting my case to the provincial tumour board in 10 days. Meanwhile I am living in limbo again except now I know how quickly this bloody thing is growing. And I don't know what effects this fistula will have.

Pretty much sick of this cancer business! I think as humans we like to think if we follow the rules that things work out. I did the chemo but it didn't do its job! So there's my rant and if any of you have any idea what this fistula might do or any guesses on possible treatment I would love to hear them.

Thanks, 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

NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

Re: very discouraged with this cancer business

Postby NHMike » Sat Jul 29, 2017 3:33 am

Hello Beth,

I am also staged 3B though mine is rectal and not colon but I was a bit surprised at how slowly things move along as well. I developed pressure from the tumor that makes it hard to have BMs and I was worried that I would have an obstruction before treatment started and my concerns seemed to be mostly ignored by doctors and nurses. I think that they expected me to show up in an ER in the event of a blockage. In searching through the boards, I did run into a few people that did go this route but I think that it would have been better to deal with this on a non-emergency basis but maybe that's not how our medical systems or hospitals are set up.

The thing that I've found about cancer is that it can move very slowly or very quickly and it's probably better to assume that it can move quickly. I worry that my 3B could turn into 3C or 4-something due to waiting a few weeks longer than what should have happened.

I agree about following the rules but I can see that cancer doesn't always follow the rules. There's a lot that we still don't know and a lot about cancer treatment is in numbers. There are some advantages to the expertise levels of your doctors, the quality of testing (genetic for example), and being able to get in your imaging and appointments in a timely manner. In my area, this can vary widely between hospitals and doctors.

I do hope that things work out for you and that you get a plan to deal with the lymph nodes.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

WarriorSpouse
Posts: 80
Joined: Tue Aug 16, 2016 9:02 pm

Re: very discouraged with this cancer business

Postby WarriorSpouse » Sat Jul 29, 2017 10:20 am

Beth,

There are no rules in fighting cancer, your job is to kick its A$$! ...Never worry about fighting fair (following the crowd) when you need to win. Games are won by winning the loose ball... Get it and run with it.

I am not familiar with BC and/or Canadian HC, but I do know in other life experiences, you need an advocate, if not yourself, your spouse or a close friend. If your appointments are not going quick enough, travel to a location where there is a better tempo of care... Every facility or oncologist is not equal. Seek out CRC specialists and care.

There are a few Canadians on CT that should have good advice for you.

Best wishes.
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

Achilles Torn
Posts: 88
Joined: Fri Dec 16, 2016 2:41 pm

Re: very discouraged with this cancer business

Postby Achilles Torn » Sat Jul 29, 2017 11:15 am

Hi Beth,

I was sorry to read about your lymph nodes. I think I read on a previous post you are MSI-High ? I might have that wrong - but if so it may be why FolFox didn't work and should be an indicator for immunotherapy.

I'm in BC as well.

Cheers
AT
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

Re: very discouraged with this cancer business

Postby NHMike » Sat Jul 29, 2017 11:32 am

Achilles Torn wrote:Hi Beth,

I was sorry to read about your lymph nodes. I think I read on a previous post you are MSI-High ? I might have that wrong - but if so it may be why FolFox didn't work and should be an indicator for immunotherapy.

I'm in BC as well.

Cheers
AT


She indicated that she is MSI-High in viewtopic.php?f=1&t=58415&p=459833#p459833

A molecular pathologist told me that I would be eligible for Keytruda if I were MSI-High. My ImmunoHistoChemistry test indicated that was unlikely but I'm have the MSS test done anyways. I looked at pricing for Keytruda without insurance and I got a figure of $10K for 4 50 ml vials. I've read elsewhere on these forums that it's an infusion drug and some here have had it from 3-6 weeks so it looks quite expensive without insurance. I would hope that the folks in Canada would approve it as they have in the US for treatment of MSI-high cases.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

Stewsbetty
Posts: 96
Joined: Thu Jul 14, 2016 7:08 am

Re: very discouraged with this cancer business

Postby Stewsbetty » Sat Jul 29, 2017 1:32 pm

Thanks for the replies. I am msi high and looking at an immunotherapy trial out of Edmonton, Alberta but my onc said this whole fistula business might change things and whether i would even be eligible anymore. She talked with the other providers at the cancer centre and they all recommended I stick with chemo (folfiri with avastin this time). I was asking about possible off label use to be able to do it closer to home. She said 10,000-14000 a month. We can ask my husband's insurance to approve it for coverage too. This would mean way less for us to pay. But like I said this whole fistula thing is throwing a wrench in things.
Warrior spouse. All cancer care is delivered through bc cancer agency. There are a few main centres around the province but I think there is a lot of following the same set of guidelines and care practices. I think because of the large amount of growth in such a short time my onc is trying to pick up the pace of treatment.
I have just been trying to guess what suggestions might be made to deal with this new situation. I like to research ahead of time since it helps me to understand when I am at appointments. I am lucky to have my dad with me for my appointments and now my sister is visiting and she is great for questioning and advocating.
Wishing my cancer would follow the "normal" paths so I would feel there was more likelihood of survival.
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

WarriorSpouse
Posts: 80
Joined: Tue Aug 16, 2016 9:02 pm

Re: very discouraged with this cancer business

Postby WarriorSpouse » Sat Jul 29, 2017 3:04 pm

I am not certain if your cancer can be fought with Avastin and 5FU, but ask your oncologist. Here in Boston it is the normal proactive treatment from day #1, but my wife is KRAS mutant.

I have difficulty wondering why some countries are not doing this protocol as well... I know it does not work for everyone, but from my perspective, I would ask why it has not been used yet.

Sooner is better... There is my "warrior" advocacy kicking in again:) LOL!

I'm a good soccer coach (U-12), but I wish it transferred into being a better cancer problem solver... Good Luck!
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

Achilles Torn
Posts: 88
Joined: Fri Dec 16, 2016 2:41 pm

Re: very discouraged with this cancer business

Postby Achilles Torn » Sat Jul 29, 2017 3:54 pm

Hi Beth,

I'd expect to see Maia weigh in on this as she is the most informed on the topic (how do I 'bat signal' Maia ???).... however my understanding is that if you are MSI-High recent researched has shown FolFox may actually be detrimental and, Immunotherapy is far more likely to be effective and is starting to be recommended as First Line Treatment for MSI-High by leading Oncologists in the US (we lag a bit here in Canada).

I'm not a Dr or Scientist and I can only tell you that if I were in your position I would be pushing hard for immunotherapy. This may be tough through BCCA, but it can be done. I'm not MSI-High - but discussed obtaining therapies that are not yet approved through the BCCA with my Onc who is the head of Oncology at Abby Cancer centre. (this was regarding BRAF triplet therapy for another BCCA patient I know). He explained the process and while it may be difficult he assured me it can be done if there is scientific evidence of clinical benefit (which in your case there would be).

I'm going to hope Maia or Tom weigh in here....but I am here to help with advocating with the BCCA if needed.

AT
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: very discouraged with this cancer business

Postby Maia » Sat Jul 29, 2017 7:31 pm

Hi, AT, bat signal received : )

I already told Beth time ago that she likely would benefit from immunotherapy, and that in Canada the way to obtain it is on a clinical trial, at the moment: viewtopic.php?f=1&t=58318&p=459238#p459197
Later, CRguy pointed her to a trial in her area viewtopic.php?f=1&t=58415&p=459896#p459872
and to all the results for Canada in the Late Stage MSS-CRC trial finder (which include trials suitable also for MSI-high, at least stated otherwise in the inclusion/exclusion criteria):
Clinical trials for CRC, mainly immunotherapy-based, in Canada: http://trialfinder.fightcrc.org/trials/ ... erapyName=

She said she's looking at NCT02060188 An Investigational Immuno-therapy Study of Nivolumab, and Nivolumab in Combination With Other Anti-cancer Drugs, in Colon Cancer That Has Come Back or Has Spread (CheckMate142) https://clinicaltrials.gov/ct2/show/NCT02060188 , which is one of the best ones, IMHO, for both, MSS and MSI-high.

Beth, it's probably the older, ongoing since 2014, immuno trial out there, for CRC. I remember the excitement when it started (we barely knew what MSS and MSI would mean for treatment, back then), when nivolumab was more often called ''BMS-936558'', and atezolizumab was 'MPDL3280A', and was starting to be combined with cobimetinib. Being now more than one lymph node involved, so resection is unlikely, and being MSI-high, I dare to say that trial might be a very reasonable option, at least until an anti PD-1/L1 gets approved in Canada.

NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

Re: very discouraged with this cancer business

Postby NHMike » Sat Jul 29, 2017 8:19 pm

Maia wrote:Hi, AT, bat signal received : )

I already told Beth time ago that she likely would benefit from immunotherapy, and that in Canada the way to obtain it is on a clinical trial, at the moment: viewtopic.php?f=1&t=58318&p=459238#p459197
Later, CRguy pointed her to a trial in her area viewtopic.php?f=1&t=58415&p=459896#p459872
and to all the results for Canada in the Late Stage MSS-CRC trial finder (which include trials suitable also for MSI-high, at least stated otherwise in the inclusion/exclusion criteria):
Clinical trials for CRC, mainly immunotherapy-based, in Canada: http://trialfinder.fightcrc.org/trials/ ... erapyName=

She said she's looking at NCT02060188 An Investigational Immuno-therapy Study of Nivolumab, and Nivolumab in Combination With Other Anti-cancer Drugs, in Colon Cancer That Has Come Back or Has Spread (CheckMate142) https://clinicaltrials.gov/ct2/show/NCT02060188 , which is one of the best ones, IMHO, for both, MSS and MSI-high.

Beth, it's probably the older, ongoing since 2014, immuno trial out there, for CRC. I remember the excitement when it started (we barely knew what MSS and MSI would mean for treatment, back then), when nivolumab was more often called ''BMS-936558'', and atezolizumab was 'MPDL3280A', and was starting to be combined with cobimetinib. Being now more than one lymph node involved, so resection is unlikely, and being MSI-high, I dare to say that trial might be a very reasonable option, at least until an anti PD-1/L1 gets approved in Canada.


Just curious why she wouldn't just go with Keytruda as that's on the market, at least in the US, right now. I looked up Nivolumab and Atezolizumab and they're both on the market now as well. Does it take a while for Canada to approve drugs after the FDA does so?
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

Achilles Torn
Posts: 88
Joined: Fri Dec 16, 2016 2:41 pm

Re: very discouraged with this cancer business

Postby Achilles Torn » Sat Jul 29, 2017 8:42 pm

Ah Maia of course you were already on top of this. My bad ! I will only add that my Oncologist explained non approved drugs such as keytruda can be obtained through the BCCA outside of a trial.

Your oncologist essentially presents a case to the provincial board with evidence of clinical benefit. The board reviews and if they agree forward the recommendation to a BCCA VP who approves providing the drug. I'd imagine with all the science behind immunotherapy out there you would have a good chance of it. The key is that your Oncologist has to be willing to make the application and write up the case. If mine wasn't prepared to do that I'd seek a second opinion !
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: very discouraged with this cancer business

Postby Maia » Sun Jul 30, 2017 7:45 am

Achilles Torn wrote: I will only add that my Oncologist explained non approved drugs such as keytruda can be obtained through the BCCA outside of a trial.

Your oncologist essentially presents a case to the provincial board with evidence of clinical benefit. The board reviews and if they agree forward the recommendation to a BCCA VP who approves providing the drug. I'd imagine with all the science behind immunotherapy out there you would have a good chance of it. The key is that your Oncologist has to be willing to make the application and write up the case. If mine wasn't prepared to do that I'd seek a second opinion !


Oh, that is great to hear. Definitely, it would be just a matter of they approving the use of anti PD-1/L1 off label, since they are drugs approved, but for other cancers. In Canada, Opdivo --nivolumab, Keytruda --pembrolizumab-- and Tecentriq --atezolizumab-- are all approved in Canada, even if for other cancers.
I think it is only a matter of months or weeks until at least Keytruda gets approved for any MSI-high cancer, in Canada. The evidence is solid.

Stewsbetty
Posts: 96
Joined: Thu Jul 14, 2016 7:08 am

Re: very discouraged with this cancer business

Postby Stewsbetty » Tue Aug 01, 2017 8:57 am

Thanks guys. At the last appointment I was pushing for the immunotherapy pretty hard. I showed my oncologist the trial I am interested in. And we talked about off label use of immunotherapy. She told me the procedure for off label involves paying for it yourself and getting your cancer centres approval for administering it there at the site. I checked with my husbands insurance and there is a possibility that they would cover most of the expense. They just need an application with the dr explaining the rational behind its use and the studies showing its efficacy. So I thought we would be pretty good to go either way.
She emailed the trial head for me to inquire about it for me and she discussed with colleagues about off label use at the cancer centre. I don't know if she has heard back about the trial yet but all the colleagues felt that I should try folfiri with avastin this time. I am kras mutant. (Maybe no avastin last time because I was stage 3 then?)
Then they discovered this fistula between the tumour and the duodenum. Now I don't know how or why this changes things but it seems to. So holding pattern until the tumour board presentation.
Maia wrote:
Oh, that is great to hear. Definitely, it would be just a matter of they approving the use of anti PD-1/L1 off label, since they are drugs approved, but for other cancers. In Canada, Opdivo --nivolumab, Keytruda --pembrolizumab-- and Tecentriq --atezolizumab-- are all approved in Canada, even if for other cancers.
I think it is only a matter of months or weeks until at least Keytruda gets approved for any MSI-high cancer, in Canada. The evidence is solid.


My oncologist said she would was on the board for approving drugs and said these aren't even in the pipeline yet. :( so it will definitely be months.

AT, so hard to get a second opinion in a cancer centre that can barely keep a couple oncologists on staff. Mine comes up from the coast for a week each month. The rest of the time you see GPs of oncology who don't seem to have much information and refer back to the oncologist. Even my oncologist didn't seem very familiar with the literature around immunotherapy for msi-high. I am hoping with the presentation before the tumour board that there might be some drs there more up on it that will suggest it as well.

Just really wish I knew what the darn fistula will mean for all of this!
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

henry123
Posts: 13
Joined: Sun Oct 08, 2017 3:25 am

Re: very discouraged with this cancer business

Postby henry123 » Sun Oct 08, 2017 4:26 am

Hello
Since you are msi-H , please explore immunotherapy options .
And if you can afford go in for Nivolumab or Keytruda off plan while awaiting for approval in Canada.
If not able to get local approval, consider overseas options.
Best wishes.

henry123
Posts: 13
Joined: Sun Oct 08, 2017 3:25 am

Re: very discouraged with this cancer business

Postby henry123 » Sun Oct 08, 2017 4:36 am

Stewsbetty wrote:Hey all,

I am going to tell some of my story and gripe and vent a bit. This is hard to do with friends and family sometimes because I don't want to lay a heavier burden on them.

I was diagnosed June 2016 and had a right hemicolectomy. I was staged 3b or 3c (I have 2 different reports one saying 6 of 10 LN positive and 1 saying 10 of 16). I followed prescribed treatments Folfox 12 rounds and kind of expected to hear the "good job and you're done" at the end. I didn't get that - just sent for a PET to check on a LN that they were watching throughout treatment. On Feb 28 it was measuring 13mm. It was cancerous. Oncologist recommended surgery (beginning of May). Didn't get to see surgeon until the end of June. He said to plan for surgery at the end of August (mentioned the slow growing nature of CC). I had a CT mid July and that LN has grown to a mass of 7x7x5cm and there is spread to several more LNs. Today I got a call that there is a fistula between the tumour and the duodenum. No idea what the plan will be going forward from this. My oncologist is presenting my case to the provincial tumour board in 10 days. Meanwhile I am living in limbo again except now I know how quickly this bloody thing is growing. And I don't know what effects this fistula will have.

Pretty much sick of this cancer business! I think as humans we like to think if we follow the rules that things work out. I did the chemo but it didn't do its job! So there's my rant and if any of you have any idea what this fistula might do or any guesses on possible treatment I would love to hear them.

Thanks, Beth


Beth,
Not that it is too relevant to treatment at present , but consider possibility of getting yourself tested for Lynch Syndrome.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: heiders33, KathyLynn and 52 guests