Another Year in the Books

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mom_2_3
Posts: 361
Joined: Sat Nov 29, 2008 8:09 pm

Another Year in the Books

Postby mom_2_3 » Sat Jul 02, 2016 9:46 am

Had my yearly CT scan and an Ultrasound to watch my thyroid on this past Monday. Checked the MSK portal all week for the reports to post and they finally did post last night while my husband and I were enjoying dinner and some wine. After 7 years and 4 months, I remain in remission from my Stage IV diagnosis (liver involvement). We truly had something to toast to.

I feel incredibly blessed to be here after being told in 2008 that I had 22-24 months to live. I am so grateful for so many things---the support of my husband, for my amazing sister who helped every week with housekeeping and childcare during the period of acute illness, for a wonderful mother-in-law that would come stay with us for weeks on end to help us, for my husband being employed by a company that was so amazingly supportive of us during our time of need (the CEO of my husband's Fortune 500 company still asks him all the time how I am doing) and most importantly, for a medical team that gave us hope and options.

I think back about the comments made to me about my doctor, Dr. Nancy Kemeny as we evaluated treatment options. Other doctors told me that she was a dinosaur, not very nice, out-dated, that the HAI pump was an ancient technology, that it was a waste of time and energy to get into NYC to see her, and etc. Well that amazing doctor (and of course my crack surgeons Dr. Philip Paty and Dr. Michael D'Angelica) saved my life. I am tearing up thinking about the debt of gratitude I owe that team. I have only positive things to say about Memorial Sloan-Kettering and all the staff I have interacted with since 2009. If you are in need of a second opinion I highly urge to to consider MSK as an option.

I am still 3 years away from 10 which is my magic number and the point at which I will finally let my children know about my diagnosis. I want to make sure they are extra vigilant in watching out for their own health as they move into their teen years. I still have my HAI pump in although I haven't had it accessed now for at least 2 years. Hoping to get around to making the appointment to have it removed sometime this fall.

That little girl that saved my life will be 8 in November. Best word to describe her is "spitfire" as she has a way with her words and actions that has me giggling just about every day.

Thoughts and wishes for all those here,
Amy
CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
10 years NED.

zx10guy
Posts: 232
Joined: Mon Jan 07, 2013 12:54 pm

Re: Another Year in the Books

Postby zx10guy » Sat Jul 02, 2016 11:57 am

Amy,

Congratulations on reaching this milestone especially with the dire picture your medical team initially provided you.

As an aside, the comment you posted about how other doctors were being critical about Dr. K really struck a nerve with me. To be upfront, I have no affiliation with Dr. K. But it's amazing the medical system churns out these types of so called doctors. I got to see the best and worst of the medical profession from where they all originate in college through my interactions as a first responder to being a patient. The system to create doctors is severely broken and I can get into a separate diatribe about the lack of emphasis on actual patient care mechanics versus just punching in and out for a job. As a first responder, I've been a witness to the same callous attitude by an ER trauma physician towards one of my patients we brought in. But I've been given hope that there are good doctors out there when I was diagnosed with cancer. The liver surgeon who postponed his vacation plans during Christmas so he could be in the operating room to personally biopsy my liver and if needed do a resection right then before my CRC surgeon would do a resection to the primary in my descending colon.

Also of the comment about not being nice. Well, in the end, it's actions which speak louder than words. I think people really don't care if their doctors give them a warm fuzzy if in the end this doctor can cure you of any illness you have. My CRC surgeon doesn't have the best bedside manner either. But so far it seems that he did his job well in getting all the cancer out of me and he was responsible for pulling in that liver surgeon I mentioned above.

Sorry about the tangent. But again congratulations.

DarknessEmbraced
Posts: 3584
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Another Year in the Books

Postby DarknessEmbraced » Sat Jul 02, 2016 9:12 pm

Congratulations! Wonderful news! :D
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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Nik Colon

Re: Another Year in the Books

Postby Nik Colon » Sat Jul 02, 2016 10:26 pm

Congrats! Great to hear!

radnyc
Posts: 439
Joined: Tue Apr 06, 2010 6:32 pm

Re: Another Year in the Books

Postby radnyc » Sun Jul 03, 2016 8:29 am

Great news Amy! I'm right behind you. Almost 6 years.

Al
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Another Year in the Books

Postby HopeForJesse » Sun Jul 03, 2016 8:53 am

radnyc wrote:Great news Amy! I'm right behind you. Almost 6 years.

Al
Big congrats and thanks for the much needed inspiration today. HAI scheduled for my DH in 9 days!!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Another Year in the Books

Postby HopeForJesse » Sun Jul 03, 2016 9:03 am

mom_2_3 wrote:Had my yearly CT scan and an Ultrasound to watch my thyroid on this past Monday. Checked the MSK portal all week for the reports to post and they finally did post last night while my husband and I were enjoying dinner and some wine. After 7 years and 4 months, I remain in remission from my Stage IV diagnosis (liver involvement). We truly had something to toast to

I think back about the comments made to me about my doctor, Dr. Nancy Kemeny as we evaluated treatment options. Other doctors told me that she was a dinosaur, not very nice, out-dated, that the HAI pump was an ancient technology, that it was a waste of time and energy to get into NYC to see her, and etc. Well that amazing doctor (and of course my crack surgeons Dr. Philip Paty and Dr. Michael D'Angelica) saved my life. I am tearing up thinking about the debt of gratitude I owe that team. I have only positive things to say about Memorial Sloan-Kettering and all the staff I have interacted with since 2009. If you are in need of a second opinion I highly urge to to consider MSK as an option.


Amy


Amy,
CONGRATULATIONS- So nice to hear your story!
I so needed this inspiration today as my husband got up for breakfast and is already back in bed 30 minutes later due to the chemo fatigue and emotional exhaustion of the ileostomy. Glad to have a reminder that this is temporary.

We were told the same things by the local docs that the technology is out dated blah,blah, blah. As we anxiously await the HAI surgery (and reversal) in 9 days, I am eternally grateful that Dr K is still working and helping countless others like us who so desperately needed the 2nd opinion and hope.

I hope to be able to quote this post in 7 years+ with a similar toast story.
Thanks again for the good news and God Bless.
Mary
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Another Year in the Books

Postby lauragb » Sun Jul 03, 2016 1:21 pm

Amazing and so hopeful for so many. Congratulations!!

Laura
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

User avatar
Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: Another Year in the Books

Postby Annemiek » Sun Jul 03, 2016 1:31 pm

Wauw! Just wauw! Tremendous!
Congrats and many happy returns!

Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

User avatar
Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: Another Year in the Books

Postby Annemiek » Sun Jul 03, 2016 1:40 pm

May I ask what your children know and din't know, since you will be telling them about your diagnosis lateron? They must know how ill you have been over the years?

Thanks
Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

mom_2_3
Posts: 361
Joined: Sat Nov 29, 2008 8:09 pm

Re: Another Year in the Books

Postby mom_2_3 » Mon Jul 18, 2016 5:40 pm

Annemiek,

My children were 5, 3 and newborn when I was diagnosed. My husband and I made the decision to not tell the older children about my diagnosis. My sister and mother-in-law covered for me during my absences and we told them I had eye surgery for when I was in the hospital for my big surgery. All subsequent appointments were about my "eyes" and they could well believe that given I have poor eyesight (although correctable). I did lose some hair but the kids never asked about it and if I was ill during treatments I would "barrel" my way through in order to provide a semblance of normalcy. They never seemed to notice anything quite honestly other than my son feeling my abdomen and asking me why it was so "hard" (my HAI pump). Basically they didn't know anything other than mommy had "bad eyes" and I certainly played that card in order to get them to eat more carrots...

I know many people believe in 100% honesty with their children but I believe that everyone should do what feels best for their children and their environments. My children were a bit anxious as it was and I remembered growing up under constant stress that my father would succumb at an early age to lung cancer (which he in fact did although I was out of college at the time). I didn't want my kids to hear the word "cancer" and worry about me. I feel like when I hit 10 years it will be safer to tell them about what happened and also encourage them to look after their own health and bowel habits to ensure that they are not affected by colon cancer.
CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
10 years NED.


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