Please help

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Naniconi
Posts: 8
Joined: Thu Jan 10, 2019 6:53 pm
Facebook Username: Connie

Please help

Postby Naniconi » Tue Jan 22, 2019 1:16 am

I’m a caregiver to my husband 68 y/o diagnosed colon cancer in 12/11. Had surgery 1/12, Folfox
January to July 2012. Developed carcinomatosis May 2014 on folfiri since then up to now. Routine CT Jan 7, 2019 showed ascites. Paracentesis 300 cc fluid negative for cancer cells. CEA 5 not rising. Molecular GPS done he’s candidate for Keytruda. But oncologist says since ascitic fluid is negative for malignancy , he will continue with the current folfiri. And wait for recurrence of ascites then will start keytruda. I’m worried since there’s a 19% false negative on ascitic fluid cytology, that he’s truly having a recurrence. And keytruda might be late! Should he start keytruda now? Any advice? Thank you .
naniconi caregiver to husband 68 y/o
Dxd 12/11 stage 3 CC
Surgery 1/12
Folfox 1/12 to 7/12
Carcinomatosis 5/14
Folfiri Avastin 5/14 up 1/19
Ascites 1/19
Will start Keytruda

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: Please help

Postby hiker » Tue Jan 22, 2019 8:49 am

Hey Naniconi,

My advice would be to get a second, third or fourth opinion at a major cancer center if you already haven't. Where is your husband being treated?

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Please help

Postby Deb m » Tue Jan 22, 2019 9:51 am

I agree that a second opinion from a major cancer would be very beneficial now.

Naniconi
Posts: 8
Joined: Thu Jan 10, 2019 6:53 pm
Facebook Username: Connie

Re: Please help

Postby Naniconi » Tue Jan 22, 2019 8:04 pm

To Hiker and Deb m
Thank you for your response.
We requested the pathologist to to do another cell block from the same specimen and result today is positive for malignancy cells! Therefore onco is putting him on keytruda as doon as prior authorization is done.
We pray that this will work for him.
Thanks again
Connie
naniconi caregiver to husband 68 y/o
Dxd 12/11 stage 3 CC
Surgery 1/12
Folfox 1/12 to 7/12
Carcinomatosis 5/14
Folfiri Avastin 5/14 up 1/19
Ascites 1/19
Will start Keytruda

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: Please help

Postby hiker » Wed Jan 23, 2019 8:17 am

I stand by my prior comment. Have you gotten a second opinion from a major cancer center?

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Naniconi
Posts: 8
Joined: Thu Jan 10, 2019 6:53 pm
Facebook Username: Connie

Re: Please help

Postby Naniconi » Thu Jan 24, 2019 6:18 am

No we haven’t. We re looking into that. We live in southern CA. Anybody in this area who has recommendations?
Thanks
naniconi caregiver to husband 68 y/o
Dxd 12/11 stage 3 CC
Surgery 1/12
Folfox 1/12 to 7/12
Carcinomatosis 5/14
Folfiri Avastin 5/14 up 1/19
Ascites 1/19
Will start Keytruda

Naniconi
Posts: 8
Joined: Thu Jan 10, 2019 6:53 pm
Facebook Username: Connie

Husband starting keytruda, any advice?

Postby Naniconi » Thu Jan 24, 2019 6:29 am

My husband is going to start keytruda. For those on it, do you get premeds before infusion? What are the side effects? How do you monitor for response to it? His CEA now is 5 and has not significantly increased even if he’s having ascites. How soon do you know that you have positive response. Any other advice?
Thanks so much,
Naniconi
naniconi caregiver to husband 68 y/o
Dxd 12/11 stage 3 CC
Surgery 1/12
Folfox 1/12 to 7/12
Carcinomatosis 5/14
Folfiri Avastin 5/14 up 1/19
Ascites 1/19
Will start Keytruda

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Husband starting keytruda, any advice?

Postby Stewsbetty » Fri Jan 25, 2019 8:42 am

Naniconi wrote:My husband is going to start keytruda. For those on it, do you get premeds before infusion? What are the side effects? How do you monitor for response to it? His CEA now is 5 and has not significantly increased even if he’s having ascites. How soon do you know that you have positive response. Any other advice?
Thanks so much,
Naniconi


Hello Naniconi, I have been on Keytruda for 1.5 years now. I do not have any premeds at all. I know some have a bit of Benadryl but I have had no reaction of any type. It is a very fast infusion. Meds run for about 30 minutes and then another 15 minutes or so to completely flush the lines. It doesn’t sap my energy so the rest of the day is “normal”.

I knew it was working after about 4 weeks. I had numerous aggressively growing tumours and was in a lot of pain at the start of treatment. By 4 weeks in my pain had started to lessen. By 6 weeks I could see visible shrinkage in my enlarged lymph node in my neck. I had a scan 10 weeks in and it showed basically everything had shrunk by half. That was a great day!

I hope your husband has a similar result.
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
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

Naniconi
Posts: 8
Joined: Thu Jan 10, 2019 6:53 pm
Facebook Username: Connie

Re: Please help

Postby Naniconi » Fri Jan 25, 2019 8:51 am

Hi stewsbetty
Thank you so much for your reply. This makes me and my husband feel less anxious. I’m happy that keytruda is working for you. I pray that it will work for my husband too.
Naniconi
naniconi caregiver to husband 68 y/o
Dxd 12/11 stage 3 CC
Surgery 1/12
Folfox 1/12 to 7/12
Carcinomatosis 5/14
Folfiri Avastin 5/14 up 1/19
Ascites 1/19
Will start Keytruda


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