Mother stage IV, terrified

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mariane
Posts: 620
Joined: Sun Sep 13, 2015 6:16 pm

Re: Mother stage IV, terrified

Postby mariane » Wed Feb 07, 2018 8:56 am

I wish your mom good consultation with Dr. Kemeny! Good luck!


At 21 months after resection I was NED again, good labs. I am so happy I got these soon 3 years with my family and hope for more.
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

mariane
Posts: 620
Joined: Sun Sep 13, 2015 6:16 pm

Re: Mother stage IV, terrified

Postby mariane » Mon Feb 19, 2018 12:37 pm

I wish you the good consultation with Dr. Kemeny and a plan to get these tumors out.

Good luck!
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

njf
Posts: 12
Joined: Mon Jan 08, 2018 9:32 pm

Re: Mother stage IV, terrified

Postby njf » Thu Feb 22, 2018 11:16 pm

mariane wrote:I wish you the good consultation with Dr. Kemeny and a plan to get these tumors out.

Good luck!


Thank you! We are hoping for a similar outcome as you! However my moms recent blood work showed a jump in CEA from 12.4 up to 22.2 so she is very worried. However I am hoping that this is just because she had such a large reduction in tumor volume so rapidly that its possible this is the cause as the tumors are giving off necrotic cells as I would find it odd for disease progression after such a marked regression.

We are going to stay positive though and hope that Dr. Kemeny has some input and we can formulate a game plan and yes hopefully we can get the tumors out asap!

njf
Posts: 12
Joined: Mon Jan 08, 2018 9:32 pm

Re: Mother stage IV, terrified

Postby njf » Thu Mar 01, 2018 11:52 pm

Just wanted to post an update after visiting Dr. Kemeny at MSK.

It was very good news for sure! Although we are now going to stop the oxilaplatin due to side effect issues, that Dr. Kemeny said should have been discontinued atleast a treatment or two ago. Dr. Kemeny thinks that my mom is probably resectable now but because of the avastin she must stop that before they could do surgery, so she is stopping that and switching her to I am guessing erbitux because she is KRAS wild.

So the current plan now is to stop oxi and continue treatment for two months -> we go to new york again and consult with Dr. K and the surgeon and discuss further implanting the HAI pump and go from there!

This is a sharp contrast to what we had been told by the local onc, infact when we told Dr. Kemeny about my moms prognosis of 2-5 years and no possibility of ever being resectable called her onc and discussed the fact the oxi should have been stopped and that her prognosis was wrong and told her the new treatment plan and goals.. needless to say my moms local onc called her today and said the instead of her seeing her she will be seen by her assistant the next visit due to her seeing a new patient.

mariane
Posts: 620
Joined: Sun Sep 13, 2015 6:16 pm

Re: Mother stage IV, terrified

Postby mariane » Fri Mar 02, 2018 10:29 pm

I am very happy that you feel well after meeting Dr. Kemeny. She always has plan and fights for her patients.

I also came back uplifted from the first consultation with her. She told me that we would get this cancer. And indeed she got it :)

I am cheering your mom and you!
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

njf
Posts: 12
Joined: Mon Jan 08, 2018 9:32 pm

Re: Mother stage IV, terrified

Postby njf » Wed Mar 07, 2018 8:11 pm

mariane wrote:I am very happy that you feel well after meeting Dr. Kemeny. She always has plan and fights for her patients.

I also came back uplifted from the first consultation with her. She told me that we would get this cancer. And indeed she got it :)

I am cheering your mom and you!


We thank you so much! Its posts from people like you and reading other posts on forums like this that helped us decide on a course of action to take and I think MSK was a very good choice. Dr. Kemeny ordered another CT scan because she wanted a base going forward, although my mom did have a slight jump in CEA from her previous bloodwork the CT scan showed further tumor regression. They could only measure 3 tumors on the liver, the 3 largest that she had largest now being 38mm, down from 46mm on the previous report. However there is a 9mm lymph node that was mentioned that was apparently on the previous scan but wasn't really mentioned till now but it was exactly the same size as the previous scan so I am unsure what to think on that. She is also being switched from FOLFOX + Avastin to FOLFORI + Erbutix as I had suspected was the plan. She is not looking forward to the potential side effects or losing the rest of her hair, however she said to the nurse when she found out her eye lashes might grow longer "perfect!" that she could just comb those back over her head after she was shown the pictures of it.

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juliej
Posts: 2852
Joined: Thu Aug 05, 2010 12:59 pm

Re: Mother stage IV, terrified

Postby juliej » Wed Mar 07, 2018 8:24 pm

njf wrote:We thank you so much! Its posts from people like you and reading other posts on forums like this that helped us decide on a course of action to take and I think MSK was a very good choice. Dr. Kemeny ordered another CT scan because she wanted a base going forward, although my mom did have a slight jump in CEA from her previous bloodwork the CT scan showed further tumor regression. They could only measure 3 tumors on the liver, the 3 largest that she had largest now being 38mm, down from 46mm on the previous report. However there is a 9mm lymph node that was mentioned that was apparently on the previous scan but wasn't really mentioned till now but it was exactly the same size as the previous scan so I am unsure what to think on that. She is also being switched from FOLFOX + Avastin to FOLFORI + Erbutix as I had suspected was the plan. She is not looking forward to the potential side effects or losing the rest of her hair, however she said to the nurse when she found out her eye lashes might grow longer "perfect!" that she could just comb those back over her head after she was shown the pictures of it.

Excellent news! It sounds like Dr. Kemeny has a plan for your mom and things are moving along! MSK always orders a new baseline scan. Their CT scanners are higher resolution than most machines found elsewhere so they prefer doing their own imaging.

Erbitux isn't fun, but it's doable to beat this thing! My hair became quite thin on chemo but it grew back thicker than ever when I finished with treatment. I'm so excited that your mom is going to be seeing Dr. K. My local oncologist only gave me 6 months without chemo and 18 months with it. But Dr. Kemeny saw the possibility of a cure/remission for me when no one else did. She's simply the best there is!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

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GrouseMan
Posts: 750
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Mother stage IV, terrified

Postby GrouseMan » Thu Mar 08, 2018 6:22 pm

Actually while my wife was on Avastin, Irrinotecan and Erbutux, she thought it was a piece of cake. Her words! Additionally her hair actually started to thicken with the addition of the erbitux. She found it was the 5-FU that was what was making her feel worse. Be sure you look into using something like Cephalexin an antibiotic if you can, as it helps aleviate the rash from erbitux quite a bit. Overall - My wife tolerated Chemo a great deal, and very seldom had the terrible side effects that many report. Kept her alive for probably another year or so with a pretty good QOL up until about 3 weeks before her last hospitalization she spent a week riding her horse every day for several hours each while watching dogs run in a field trial. A week later she was judging a field trial off horse back for two days!

Good luck, glad you got to see Dr K.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

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juliej
Posts: 2852
Joined: Thu Aug 05, 2010 12:59 pm

Re: Mother stage IV, terrified

Postby juliej » Thu Mar 08, 2018 7:10 pm

GrouseMan wrote:Actually while my wife was on Avastin, Irrinotecan and Erbutux, she thought it was a piece of cake. Her words! Additionally her hair actually started to thicken with the addition of the erbitux. She found it was the 5-FU that was what was making her feel worse. Be sure you look into using something like Cephalexin an antibiotic if you can, as it helps aleviate the rash from erbitux quite a bit. Overall - My wife tolerated Chemo a great deal, and very seldom had the terrible side effects that many report. Kept her alive for probably another year or so with a pretty good QOL up until about 3 weeks before her last hospitalization she spent a week riding her horse every day for several hours each while watching dogs run in a field trial. A week later she was judging a field trial off horse back for two days!

GrouseMan, I'd be curious to see your wife's genomic information! I'm wondering if there's something in there that's a clue to her tolerance for chemo. She seemed to have some inborn protection from the toxicities that other patients experience. I remember how amazing she was!
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

mariane
Posts: 620
Joined: Sun Sep 13, 2015 6:16 pm

Re: Mother stage IV, terrified

Postby mariane » Thu Mar 08, 2018 8:53 pm

I appreciate your kind words. Thank you.
It is good to have Dr. Kemeny on board.
I had a lot of FOLFIRI. I never lost my hair completely. It looked messy and thin but somehow it did not fall completely . ActuaIly it regrew very fast and nicely, slightly darker. I started coloring it naturally with herbs. I stick to it and maybe as JulieJ it is a bit thicker? And they passed shoulder length :)
I have never had panitumumab/cetuximab. Grouseman's advice is very wise. I wish her the best response to it. I did CARIS genetic testing and my cancer also KRAS wild, quadruple negative (similar in this basic mutations to your mom's cancer) tested 99% sensitive to it. I wish her the best response ever.
Sending prayers and wishing you the best of luck!
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

njf
Posts: 12
Joined: Mon Jan 08, 2018 9:32 pm

Re: Mother stage IV, terrified

Postby njf » Tue May 01, 2018 6:16 pm

I figured I would post an update after getting back from NYC with my mom. She had a visit with Dr. Paty and Dr. Kingham to discuss a game plan. They both believe that my moms surgery will be relatively straight forward for them and they both believe she is a good candidate for HAI. The plan from Dr. Paty is to remove roughly 10 inches of colon. Dr. Kingham plans to rescect two tumors on the left lobe (one very small and one larger) and will embolize another, the right lobe has 2 larger nodes and several small so it will be a 2 part procedure assuming she continues to respond to chemo and then HAI she would go back in 4-6 months to resect the left side. We also spoke with Dr. Kemeny and got some stuff setup with the local onc regarding flushing the pump and filling it with saline every two weeks.

The one thing I am worried about although they did do a CT at MSK is her CEA level jumped from 8.8 to 58.6. This is a HUGE jump, however she did just spend 4 days in the hospital on April 8th due to chemo induced colitis. She has had two scans since then and both showed further tumor regression in the liver mets so I am assuming the CEA is due to colon inflammation and healing but it scares me either way as she is still recovering from it and STILL had her last chemo cycle a week after getting out of the hospital to finish the full cycle.


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