very discouraged with this cancer business

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Stewsbetty
Posts: 165
Joined: Thu Jul 14, 2016 7:08 am

Re: very discouraged with this cancer business

Postby Stewsbetty » Tue Nov 07, 2017 3:03 am

henry123 wrote: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.


Hi Henry,

Thanks for the advice. I know it has been a month since you wrote but I haven’t been in for awhile. I did arrange to get Keytruda off label after the folfiri filed. I just had my 3rd treatment. Midway through the second treatment I noticed my neck tumour shrinking. My persistent cough disappeared. My abdominal tumour became harder to feel. It is a miracle. I had been preparing funeral instructions and getting all the paperwork sorted out for my husband to. Now I am feeling so good and I expect to live a considerable length of time now. :)

Living with hope,
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

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: very discouraged with this cancer business

Postby Shana » Tue Nov 07, 2017 3:33 am

Stewsbetty wrote:
henry123 wrote: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.


Hi Henry,

Thanks for the advice. I know it has been a month since you wrote but I haven’t been in for awhile. I did arrange to get Keytruda off label after the folfiri filed. I just had my 3rd treatment. Midway through the second treatment I noticed my neck tumour shrinking. My persistent cough disappeared. My abdominal tumour became harder to feel. It is a miracle. I had been preparing funeral instructions and getting all the paperwork sorted out for my husband to. Now I am feeling so good and I expect to live a considerable length of time now. :)

Living with hope,
Beth


Such awesome news! I wish you continued positive treatment with Keytruda and hope you get to plan a vacation next! Hope is a wonderful thing :)
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

NHMike
Posts: 1940
Joined: Fri Jul 21, 2017 3:43 am

Re: very discouraged with this cancer business

Postby NHMike » Tue Nov 07, 2017 2:38 pm

Stewsbetty wrote:
henry123 wrote: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.


Hi Henry,

Thanks for the advice. I know it has been a month since you wrote but I haven’t been in for awhile. I did arrange to get Keytruda off label after the folfiri filed. I just had my 3rd treatment. Midway through the second treatment I noticed my neck tumour shrinking. My persistent cough disappeared. My abdominal tumour became harder to feel. It is a miracle. I had been preparing funeral instructions and getting all the paperwork sorted out for my husband to. Now I am feeling so good and I expect to live a considerable length of time now. :)

Living with hope,
Beth


That's fantastic news. Hope things continue in this direction.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

DarknessEmbraced
Posts: 3275
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: very discouraged with this cancer business

Postby DarknessEmbraced » Wed Nov 08, 2017 10:48 am

Wonderful news! :)
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18

NHMike
Posts: 1940
Joined: Fri Jul 21, 2017 3:43 am

Re: very discouraged with this cancer business

Postby NHMike » Wed Nov 08, 2017 12:55 pm

Very happy that you have a working solution.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
henry123
Posts: 178
Joined: Sun Oct 08, 2017 3:25 am

Re: very discouraged with this cancer business

Postby henry123 » Fri Dec 08, 2017 3:24 am

Stewsbetty wrote:
henry123 wrote: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.


Hi Henry,

Thanks for the advice. I know it has been a month since you wrote but I haven’t been in for awhile. I did arrange to get Keytruda off label after the folfiri filed. I just had my 3rd treatment. Midway through the second treatment I noticed my neck tumour shrinking. My persistent cough disappeared. My abdominal tumour became harder to feel. It is a miracle. I had been preparing funeral instructions and getting all the paperwork sorted out for my husband to. Now I am feeling so good and I expect to live a considerable length of time now. :)

Living with hope,
Beth

Congrats.
So happy to read that your are fully responding to keytruda. I was doing the same 6 months ago ( preparing to move on). But now it seems immunotherapy is working for me too.
If your body allows do some light exercises like yoga .
Also consider vegan diet. Whatever helps.
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
4/19 1.1
Vegan yoga juicing apricot
Still on opdivo

Stewsbetty
Posts: 165
Joined: Thu Jul 14, 2016 7:08 am

Re: very discouraged with this cancer business

Postby Stewsbetty » Sun Dec 10, 2017 7:05 am

henry123 wrote:
Stewsbetty wrote:
henry123 wrote: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.


Hi Henry,

Thanks for the advice. I know it has been a month since you wrote but I haven’t been in for awhile. I did arrange to get Keytruda off label after the folfiri filed. I just had my 3rd treatment. Midway through the second treatment I noticed my neck tumour shrinking. My persistent cough disappeared. My abdominal tumour became harder to feel. It is a miracle. I had been preparing funeral instructions and getting all the paperwork sorted out for my husband to. Now I am feeling so good and I expect to live a considerable length of time now. :)

Living with hope,
Beth

Congrats.
So happy to read that your are fully responding to keytruda. I was doing the same 6 months ago ( preparing to move on). But now it seems immunotherapy is working for me too.
If your body allows do some light exercises like yoga .
Also consider vegan diet. Whatever helps.

I have been attending an exercise class for cancer patients and survivors. It has been so awesome! There is no pressure to keep up with super athletes and we can all relate and encourage each other. Our instructor (a survivor herself) modifies the exercises for any of us that have limitations.
Not quite ready to go vegetarian or vegan but am working to add in more fruits and veggies and less processed foods.
I am sure looking forward to 6 month scans and hope they show as much progress as yours!
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

User avatar
henry123
Posts: 178
Joined: Sun Oct 08, 2017 3:25 am

Re: very discouraged with this cancer business

Postby henry123 » Thu May 02, 2019 10:12 am

Stewsbetty wrote:I have been attending an exercise class for cancer patients and survivors. It has been so awesome! There is no pressure to keep up with super athletes and we can all relate and encourage each other. Our instructor (a survivor herself) modifies the exercises for any of us that have limitations.
Not quite ready to go vegetarian or vegan but am working to add in more fruits and veggies and less processed foods.
I am sure looking forward to 6 month scans and hope they show as much progress as yours!



Hi Beth,
How are things at your end?
Hope all good.
Henry
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
4/19 1.1
Vegan yoga juicing apricot
Still on opdivo

Stewsbetty
Posts: 165
Joined: Thu Jul 14, 2016 7:08 am

Re: very discouraged with this cancer business

Postby Stewsbetty » Thu May 09, 2019 1:13 am

henry123 wrote:
Stewsbetty wrote:I have been attending an exercise class for cancer patients and survivors. It has been so awesome! There is no pressure to keep up with super athletes and we can all relate and encourage each other. Our instructor (a survivor herself) modifies the exercises for any of us that have limitations.
Not quite ready to go vegetarian or vegan but am working to add in more fruits and veggies and less processed foods.
I am sure looking forward to 6 month scans and hope they show as much progress as yours!



Hi Beth,
How are things at your end?
Hope all good.
Henry


Thanks for checking in. I had a bit of a rough go for a couple of weeks last month with a partial obstruction. It brought back all the memories and worries of diagnosis. But thankfully one of the CRC community mentioned my symptoms seemed like a blockage. This brought me a lot of mental/emotional relief and then 2 weeks of a liquid/soft foods diet helped things to clear.

Back to feeling pretty good now. I thought I was supposed to get a CT at the beginning of May but the dr hasn’t set it up yet. She wants to just stay the course of Keytruda until September when my generous gift from Merck is up.
I do believe that I have healed now though I continue to have one small stable node that is slightly above average.

How have you been doing? I think you were just reaching your 2 year mark. Have you stayed on or are you taking some time away from treatment?

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: 196
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: very discouraged with this cancer business

Postby Pyro » Thu May 09, 2019 7:26 am

Stewsbetty wrote:
henry123 wrote:
Stewsbetty wrote:I have been attending an exercise class for cancer patients and survivors. It has been so awesome! There is no pressure to keep up with super athletes and we can all relate and encourage each other. Our instructor (a survivor herself) modifies the exercises for any of us that have limitations.
Not quite ready to go vegetarian or vegan but am working to add in more fruits and veggies and less processed foods.
I am sure looking forward to 6 month scans and hope they show as much progress as yours!



Hi Beth,
How are things at your end?
Hope all good.
Henry


Thanks for checking in. I had a bit of a rough go for a couple of weeks last month with a partial obstruction. It brought back all the memories and worries of diagnosis. But thankfully one of the CRC community mentioned my symptoms seemed like a blockage. This brought me a lot of mental/emotional relief and then 2 weeks of a liquid/soft foods diet helped things to clear.

Back to feeling pretty good now. I thought I was supposed to get a CT at the beginning of May but the dr hasn’t set it up yet. She wants to just stay the course of Keytruda until September when my generous gift from Merck is up.
I do believe that I have healed now though I continue to have one small stable node that is slightly above average.

How have you been doing? I think you were just reaching your 2 year mark. Have you stayed on or are you taking some time away from treatment?

Beth


Merck is trying to get its success numbers up, I betcha they will continue to give you the treatment when your Onc shows them it’s working. Could you imagine them starting to charge tens of thousands of dollars a month suddenly from a drug that is saving your life, the optics aren’t good. I’d start working it now, they may say no at first but eventually, you’ll get it. Anyway,they probably know about you, “free” isn’t really “free”, they are probably watching the people they gave it away to very closely.
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 @30(3), shit still here

Mohrfamily
Posts: 98
Joined: Tue May 22, 2018 4:04 pm

Re: very discouraged with this cancer business

Postby Mohrfamily » Sun May 12, 2019 6:30 pm

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


My husband and I struggle with this constantly. He was labeled as pallative a year ago stage 4 CRC, our onc didn't look hopeful frankly it was down right morbid/depressing between her face and tone.

Now without any surgery at all she is eager and more hopeful talking to us because numbers and scans are trending well... Just really slow progress but progress is still progress. Its hard hearing over and over your not ready for this or that when your killing yourself every other week literally in chemo to get slow results.

Chin up.
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.


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