My CRC with liver mets journey

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ginabeewell
Posts: 315
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Oct 07, 2019 9:29 am

AlexandraZ wrote:Anyway, just wanted to let you know a Danish internet friend is thinking of you and wishing you the best!! You got this.


I’m super happy to have a Danish friend! Copenhagen is on my bucket list. But my husband Per says we need to go to Norway first - he’s Norwegian, and I’ve never been!

I’m at MSK today. Had a scan yesterday and was all set to do chemo today. Successfully talked Dr Kemeny into a Vectibix reduction, but then I had my consult with Dr Kingham. He wants me to come in for surgery NEXT WEEK!

Holy cow but I’ll take it!!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

radnyc
Posts: 390
Joined: Tue Apr 06, 2010 6:32 pm

Re: My CRC with liver mets journey

Postby radnyc » Mon Oct 07, 2019 9:57 am

That’s great news! Means everything is going as planned.
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

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: My CRC with liver mets journey

Postby MeAndMine » Mon Oct 07, 2019 11:28 am

Next week! That's great news!!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

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juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Mon Oct 07, 2019 3:46 pm

ginabeewell wrote:I’m at MSK today. Had a scan yesterday and was all set to do chemo today. Successfully talked Dr Kemeny into a Vectibix reduction, but then I had my consult with Dr Kingham. He wants me to come in for surgery NEXT WEEK!

Holy cow but I’ll take it!!

Next week??? Holy cow indeed, but this is excellent news! :D :D :D

Let us know when you'll be staying at "Chateau MSK" so we can send good thoughts and energy your way!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

User avatar
ginabeewell
Posts: 315
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Oct 07, 2019 6:18 pm

juliej wrote:Next week??? Holy cow indeed, but this is excellent news! :D :D :D

Let us know when you'll be staying at "Chateau MSK" so we can send good thoughts and energy your way!

Juliej


We will go in on Tues and surgery will be Wednesday the 16th. We will need to have a nice dinner that Tuesday night! Maybe Scarpetta or Bar Masa. Open to recommendations!!

I’m just so happy I didn’t have to get more Vectibix today!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

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juliej
Posts: 3048
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Mon Oct 07, 2019 7:40 pm

ginabeewell wrote:We will go in on Tues and surgery will be Wednesday the 16th. We will need to have a nice dinner that Tuesday night! Maybe Scarpetta or Bar Masa. Open to recommendations!!

I’m just so happy I didn’t have to get more Vectibix today!

That was my very first thought - you get a much needed Vectibix break! :D :D :D

I agree about the nice dinner on Tuesday night. There are so many good choices in Manhattan - Scarpetta and Bar Masa are both good. When someone else is paying, I go to L’Artusi in the West Village, but you need a reservation at least a month in advance (unless you are very connected). An alternate is I Sodi, also in the West Village, which serves mouth-watering Tuscan-style food (Lasagne A Sugo will calm down even the most nervous stomach!).

Lately I've been on a ramen kick though. I think it has to do with fall weather. I've been living at Ippudo -- I'm addicted to their tonkotsu broth! There's one about 15 minutes from MSK hospital (65 4th Ave) if you're interested. It's not exactly a celebration place, but it'd be wonderful for post-surgery tummies. Plus, they're also great if you have kids dining with you.

I'll be thinking hard about you on October 16th and sending a ton of good thoughts your way!!!

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 9/23/2019, CEA<1

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ginabeewell
Posts: 315
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Oct 07, 2019 9:09 pm

juliej wrote:
I agree about the nice dinner on Tuesday night. There are so many good choices in Manhattan - Scarpetta and Bar Masa are both good. When someone else is paying, I go to L’Artusi in the West Village, but you need a reservation at least a month in advance (unless you are very connected). An alternate is I Sodi, also in the West Village, which serves mouth-watering Tuscan-style food (Lasagne A Sugo will calm down even the most nervous stomach!).

Lately I've been on a ramen kick though. I think it has to do with fall weather. I've been living at Ippudo -- I'm addicted to their tonkotsu broth! There's one about 15 minutes from MSK hospital (65 4th Ave) if you're interested. It's not exactly a celebration place, but it'd be wonderful for post-surgery tummies. Plus, they're also great if you have kids dining with you.

I'll be thinking hard about you on October 16th and sending a ton of good thoughts your way!!!

Juliej


Thanks Julie! The menu at L’Artusi looks amazing and not that terribly expensive - if you aren’t drinking wine!! No reservations available that Tuesday, but I do have a friend with connections. And failing that, it might be worth making a reservation for brunch the day before we have the follow up visit. I may not feel well enough to eat, but if so, we can always cancel.

The ramen reco will be clutch. I LOVE tonkotsu broth when I’m not feeling well: the place by Northwestern used to sell us pork broth for $2 when I was on a liquid only diet after my infection kept me there for a week. It saved my sanity.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

User avatar
ginabeewell
Posts: 315
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Oct 10, 2019 10:05 pm

juliej wrote:I agree about the nice dinner on Tuesday night. There are so many good choices in Manhattan - Scarpetta and Bar Masa are both good. When someone else is paying, I go to L’Artusi in the West Village, but you need a reservation at least a month in advance (unless you are very connected). An alternate is I Sodi, also in the West Village, which serves mouth-watering Tuscan-style food (Lasagne A Sugo will calm down even the most nervous stomach!).


Julie! Guess who just scored a table for 2 at L’Artusi next Tuesday night! And I didn’t use connections - just checked Open Table and got lucky!

I can’t believe how different it feels anticipating this surgery versus the first resection. I’m legit excited. I’m sure because this surgery has the potential to get me to NED while the last one did not. And I know that by four weeks out from my last surgery, I was feeling 85%. So no matter how bad I feel the first week or so, I’ll know it gets better.

My therapist was so great today: she loaned me the big crystal she keeps in her office to absorb negative energy (I never knew that is what it was for) and gave me advice for how my husband could do some energy healing post-surgery. This is the kind of thing that would in the past have had me rolling my eyes; but as she spoke I had this amazing sense of peace and confidence that my husband would and could do as she suggested.

She noted that she felt he had been a healer in a past life, which seems entirely possible. He is a born nurturer and has been an unbelievable caretaker through all this. She is convinced that we agreed before this life to be together so he could support me through it. True or not, I quite like that thought!!

My rash continues to be a pain; and today my palms started to split. I’ve been drinking tons of water and had a friend give me an aloe leaf to try. I am so ready to get this Vectibix out of my system and only regret I didn’t ask Dr K if it would be part of my mop up chemo.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

hopefulandstrong
Posts: 44
Joined: Fri Apr 19, 2019 7:11 pm

Re: My CRC with liver mets journey

Postby hopefulandstrong » Fri Oct 11, 2019 9:11 am

Sending the best possible thoughts for the surgery. Having spent a week at Chez MSK recently, I also send my best wishes for enjoying those lovely robes.
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
7/16/19 - CEA 2.8
8/1/19 - CT scan reveals 4 liver mets shrunk -- all under 3.1 CM.

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ginabeewell
Posts: 315
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Oct 11, 2019 10:19 am

hopefulandstrong wrote:Sending the best possible thoughts for the surgery. Having spent a week at Chez MSK recently, I also send my best wishes for enjoying those lovely robes.


Thank you! I love the seersucker robes they have in the pre-op rooms. How I wish I could get one of those at the hospital! Personally my favorite hospital perk was the stretchy boy short underpants they gave me. LOL!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

mpbser
Posts: 928
Joined: Wed Apr 19, 2017 11:52 am

Re: My CRC with liver mets journey

Postby mpbser » Fri Oct 11, 2019 1:45 pm

Best of luck next week. Keep us posted!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

hopefulandstrong
Posts: 44
Joined: Fri Apr 19, 2019 7:11 pm

Re: My CRC with liver mets journey

Postby hopefulandstrong » Fri Oct 11, 2019 6:49 pm

Not to be ridiculous, but I think it's possible the robes are seasonable. Mine was navy with white piping -- fetching. I looked like Katherine Hepburn in the Philadelphia Story.
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
7/16/19 - CEA 2.8
8/1/19 - CT scan reveals 4 liver mets shrunk -- all under 3.1 CM.

Mohrfamily
Posts: 170
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Wed Oct 16, 2019 4:41 am

Good luck Gina!
DH dx officially stage IV with liver mets largest 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection

User avatar
ginabeewell
Posts: 315
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Oct 17, 2019 10:00 am

Mohrfamily wrote:Good luck Gina!


I guess I had enough good luck, because surgery went well and I’m now NED!

They had to remove about 50% of my liver instead of the 30-40% they expected. I’m a little woozy today as they gave me an epidural for the pain this time; but I just went for a little walk and had a nice nap afterward!

I can have some clear liquids today and hopefully full liquids tonight. Fingers crossed, because I’m hungry!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

hopefulandstrong
Posts: 44
Joined: Fri Apr 19, 2019 7:11 pm

Re: My CRC with liver mets journey

Postby hopefulandstrong » Thu Oct 17, 2019 10:01 am

Hooray!

hopefully, this is a year you put behind you, and have a great story to tell. Thanks for keeping us updated.
54, female
1/8/19 DS Stage 4 with Liver Mets
1/11/19 Successful Colon Resect -- 12 inches of transverse colon removed
2/9/19 PET scan with disease confined to liver
2/18/19 Started Folfox -- CEA 70
5/1/19 -- Scans show progression -Switch to Folfiri
5/8/19 - BRAF mutation -- switch again to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
7/16/19 - CEA 2.8
8/1/19 - CT scan reveals 4 liver mets shrunk -- all under 3.1 CM.


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