My CRC with liver mets journey

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SGNYC
Posts: 35
Joined: Mon Sep 03, 2018 9:20 pm

Re: My CRC with liver mets journey

Postby SGNYC » Mon Jan 14, 2019 11:14 pm

Hi Rebecca,

We’re also young, NYC-based, at MSK...and husband also Stage IV diagnosed in July 18 - he had single met in liver and lung so didn’t get HAI pump but had a complete neoadjuvant liver response and near complete lung response (they did VATS and small liver resection to quadruple check). Colon resect was successful and he has one round left of chemo, then scans, and then hopeful on to monitoring him like a hawk.

I don’t know if your husband had a mediport put in, But my DH has one which is slightly visible (he’s slim)...but only if you know where to look, and I don’t expect most notice. I’ve been told it’s not entirely dissimilar.

Keeping you in my thoughts and feel free to reach out - I check every few days.
Wife to DH, 44
DX July 18 - RC at Rectosigmoid
Adenocarcinoma, Mod diff
T3N1M1
Stage IV (but MSK said not a true Stage IV at Dx)
Pos nodes: 1/18
1 Liver Met and 1 Lung Met - liver Met dead tissue at surgery, hence MSK M1 status
Baseline CEA value of 25, now 3.4
LAR (Robotic)/Liver resect(dead tissue), VATS lung - clear margins
Temp Ileo- Reversal Feb 19
Folfox - 5 Rounds Neoadj, 3 rounds Adj, then discontinued Oxali and 4 rounds just 5FU
NED and Reversal Feb 2019 - clear contrast CT, clear contrast MRI

SGNYC
Posts: 35
Joined: Mon Sep 03, 2018 9:20 pm

Re: My CRC with liver mets journey

Postby SGNYC » Mon Jan 14, 2019 11:17 pm

Also Hi Heiders. Too many of us on here but MSK seems to be doing wonders for us all. Keeping you in thoughts too.

GinaBee - thank you for documenting journey - helpful for all of us here.
Wife to DH, 44
DX July 18 - RC at Rectosigmoid
Adenocarcinoma, Mod diff
T3N1M1
Stage IV (but MSK said not a true Stage IV at Dx)
Pos nodes: 1/18
1 Liver Met and 1 Lung Met - liver Met dead tissue at surgery, hence MSK M1 status
Baseline CEA value of 25, now 3.4
LAR (Robotic)/Liver resect(dead tissue), VATS lung - clear margins
Temp Ileo- Reversal Feb 19
Folfox - 5 Rounds Neoadj, 3 rounds Adj, then discontinued Oxali and 4 rounds just 5FU
NED and Reversal Feb 2019 - clear contrast CT, clear contrast MRI

User avatar
ginabeewell
Posts: 157
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Jan 15, 2019 7:56 pm

In New York now and gearing up for tomorrow!

Cartech78, any news you can share from your Monday appt that may be helpful for me to know? Feeling excited with a touch of anxious. : )
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

heiders33
Posts: 338
Joined: Sat Nov 04, 2017 11:08 am

Re: My CRC with liver mets journey

Postby heiders33 » Tue Jan 15, 2019 9:57 pm

Hi Rebecca, happy to help answer your questions. I think you joined a couple of the Facebook groups, which is good because you'll get a lot more perspectives there. To answer your questions one by one:

1) I don't know the structure of Dr. K with the other oncologists at MSK. I would think if your current oncologist wants to implant the pump, he or she trained under Dr. K and has access to her algorithms, which is good because Dr. K shouldn't be the only expert or she'll retire with it! I was automatically made a patient of Dr. K when I said I wanted the pump, so I don't know how it works when you already have an existing team. I think it is very difficult to change oncologists within MSK, but I wouldn't worry about not having access to Dr. K's expertise since they all work together.
2) After I mentioned the thing about hot tubs, I did look at my Medtronic papers and noticed that it said I shouldn't use them. But there is a surgical oncologist in the FB group who said it is fine with the Medtronic pump, since it is battery-powered. I am going to try to clarify this with Dr. K tomorrow. I'm confused myself!
3) I do jog now and Dr. Kingham said that many of his patients run and live normal lives. He is the one who basically convinced me to get the pump. He said that Dr. Kemeny is like a "strict grandmother" in this regard, but that he does not see any issue with his patients running and that it's important for health. The only issue he has seen is in overweight or obese people, sometimes the pump will turn over and they have to go in and turn it back. That said, when I jog I run with a quick, short stride so as to lessen the impact, and I go pretty slowly, and not for very long distances. I guess you could say I'm compromising between the two opinions, just in case!
4) As far as the physical look of it, I lost all vanity long ago with multiple surgical scars, an ileostomy scar that basically looks like a second belly button, and many bruises all over my abdomen due to blood thinner injections. However, I totally get that as a concern. I don't know who will do your husband's surgery, but Dr. Kingham did mine laparoscopically, which means I just have a small scar under my belly button and a four-inch horizontal scar where the pump was placed on my left abdomen. I have been using Scar Away strips and the scars have definitely lightened over time. Also I am of the opinion that scars prove how tough you are! As far as the protrusion of the pump, it is not too bad and depends on how thin you are. Yes you can see it and feel it, but for me it is not a big deal. If anybody ever saw it and asked about it I would have no problem explaining it to them.
5) I've only gone in once for a pump refill only, since I am currently doing chemo and every time I go in I am getting labs, seeing Dr. K, etc. so it takes longer. The one time I went in just for a refill right before Christmas it didn't take too long. Once you're back in the treatment suite it takes maybe 15-20 minutes for them to empty, fill, and program the pump. I take the attitude that this is a part of my life now, so I make the most of it. The waiting room at 53rd street is pleasant, and the time I went in just for a refill I scheduled it in the evening so I didn't have to miss work. I got dinner, ate it in the waiting room, got the pump filled, and was home by 8 pm. I think you and your husband can make the most of it, maybe even make it into a date night? I know that sounds weird, but your attitude can change the process from an annoying inconvenience to an opportunity to make something fun out of it.

I think you are getting good advice in the FB group to really weigh the pros and potential risks of the pump. It really does depend on how aggressive you want to be. I chose to be aggressive because I am young and felt I could handle it. I will say that my experience has not necessarily been the norm, since my Alk Phos shot up after one full dose of FUDR, and nearly three months later it has not gone down enough for me to get another dose. So I have been getting 5FU only for a few months. I believe Dr. Kemeny is being conservative with me since I already had my resection and this is adjuvant treatment. But it is still frustrating to have gotten in only one dose so far. All that to say, it is not a 100% perfect solution, but to me the recurrence prevention stats were enough to sway me, and I don't regret getting the pump one bit.
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU

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ginabeewell
Posts: 157
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Jan 16, 2019 3:18 pm

I had my consult with Dr Kemeny this morning, and we had a good and efficient meeting.

We went into the meeting with the question not of "if" but "when" - I have done enough research to feel that the pump is the right call for me, and we knew that if we moved forward, we wanted to do it at MSK.

Dr Kemeny jumped right into the diagnostics and started to talk about the potential treatment. She suggested two more rounds of chemo, to bring me to 8 total, and then come back to NY for another scan to determine if I am resectable. If so, we would schedule surgery for a few weeks later, doing a liver resection and pump placement at the same time. She was happy with all my levels and seemed optimistic that I would be a good candidate for the pump - I was glad that she essentially reinforced what my doctor at home had suggested would be the most likely path of action.

The only thing she did NOT agree with is the idea that the Vectibix put me over the top to typhlitis - she disagreed with that notion and said she would like to make sure we reincorporate it on my next dose of chemo since my initial response to FOLFOX + Vectibix was so good. My onc had planned to gradually introduce that, however, so I don't think this take is a tough sell.

I'm on day 3 of my 6th round of chemo, after a 7 week break - the break seems to have done me well, as it seems like my neuropathy, etc are back but not at the levels they had previously been at, and I've been able to maintain my energy and appetite a little longer than usual.

After my 7 week break, I'm up 18 lbs (maybe a few more if today's scale was accurate) from my lowest weight of 90 lbs when I was discharged from the hospital. Going to try to do what I can to keep that weight on, or at least lose it less rapidly than I did my last 5 rounds of chemo...
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

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juliej
Posts: 2948
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Wed Jan 16, 2019 8:14 pm

ginabeewell wrote:After my 7 week break, I'm up 18 lbs (maybe a few more if today's scale was accurate) from my lowest weight of 90 lbs when I was discharged from the hospital. Going to try to do what I can to keep that weight on, or at least lose it less rapidly than I did my last 5 rounds of chemo...

I had trouble losing too much weight too. It's hard when you don't feel like eating and everything you do eat tastes like cardboard.

Sometimes I would just force myself to eat something that I could stand putting in my mouth (like Goldfish crackers). It was hard and often I started crying, which felt like tiny pieces of glass coming out of my eyes due to the oxaliplatin. But you have to keep up your strength so you don't have to stop chemo, so you can have surgery, so you can get to NED. Just keep your eye on the goal at all times!
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 2/1/2019, CEA<1

Mohrfamily
Posts: 94
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Thu Jan 17, 2019 5:51 am

I hope we get the same hopeful response I'm afraid that Dr. Kemeny won't give us the boost of hope we need. We are headed her way the 29th for an apt the 30th.

I wish I could say I was more excited. We are making a mini vacation out of it. DH insists on bringing the kids going to Niagara falls on the way home I told him all I really wanted was to see the statue of liberty so I think we'll try squeezing that in to. Trying to stay positive though.
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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juliej
Posts: 2948
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Thu Jan 17, 2019 5:48 pm

Mohrfamily wrote:We are making a mini vacation out of it. DH insists on bringing the kids going to Niagara falls on the way home I told him all I really wanted was to see the statue of liberty so I think we'll try squeezing that in to. Trying to stay positive though.

Good news for you! The Statue of Liberty is staying open during the government shutdown! :D

There is only one authorized way to get there, so don't buy tickets from someone hawking them on the street.

http://www.statuecruises.com

Here is the official site from the National Park Service:

http://www.nps.gov/stli/index.htm

After you visit the Statue of Liberty, you might want to head to Ellis Island. There's lots of interesting history there.

If you just want to see the Statue and save some money the free Staten Island Ferry takes you right past it. You also get a great view of lower Manhattan from the ferry. They leave about every 30 minutes, take about 25 minutes for the crossing, and you disembark at the other end and get back on the next return ferry.

If you have time, consider taking your kids to the American Museum of Natural History. I am a member so I might be biased but it's a great place for kids, plus it has lots of benches for adults to rest on while the kids oooh-and-aaahh over the displays. If the $23 admission price ($13 for children) is too high for you, a "pay-what-you-wish admission" is available at the ticket counters (not online), where the amount you pay is up to you. The fossil halls (dinosaurs!), mammal halls (dioramas of elephants, tigers, monkeys, etc), and the human origins/cultural halls (Easter Island heads, Native American dioramas, etc) are fantastic!

https://www.amnh.org/

Hope this helps!
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 2/1/2019, CEA<1

User avatar
ginabeewell
Posts: 157
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Jan 17, 2019 11:10 pm

juliej wrote: But you have to keep up your strength so you don't have to stop chemo, so you can have surgery, so you can get to NED. Just keep your eye on the goal at all times!


We are getting advice from others saying the same thing - the more I weigh, the easier surgery will be for me.

I'm wondering too if I should be trying to get a PT consult before surgery. They always say that people who are in better shape pre-op recover better post-op, right? I had enough of a chemo break before starting round #6 that I feel like I have energy enough to get some exercise in. Maybe I need to start working on my abs!
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

User avatar
ginabeewell
Posts: 157
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Jan 17, 2019 11:35 pm

Maybe this is TMI, but also interested in hearing whether others maintained their period while on chemo? I got it once after my second round of chemo in late October, right on schedule. Then it went away for Nov / Dec, but is back again now after my 7 week chemo break. Everything I read suggested that it would stop, and probably given my age (45) stop for good / put me on the path to menopause - so I guess I've decided to take this as a good sign of my body's determination to get back to normal??
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!

rlevin66
Posts: 4
Joined: Wed Nov 14, 2018 11:35 am
Facebook Username: Rebecca Perini

Re: My CRC with liver mets journey

Postby rlevin66 » Mon Jan 21, 2019 1:48 pm

thank you SO much for this robust response. I am happy to hear about your positive attitude and am definitely the cheerleader over here as well! I love the idea of a refill + favorite dinner :) I am hopeful that my husband will get the OK to run as well and I will follow up about the medtronic/hot tub rules when we go in on Wednesday for pre-op meeting and share whatever feedback we receive. I am so hopeful that you will get a good response on your next scan and that you are doing so well coping with all of this. Here's to getting to NED together :) DO keep us posted.

heiders33 wrote:Hi Rebecca, happy to help answer your questions. I think you joined a couple of the Facebook groups, which is good because you'll get a lot more perspectives there. To answer your questions one by one:

1) I don't know the structure of Dr. K with the other oncologists at MSK. I would think if your current oncologist wants to implant the pump, he or she trained under Dr. K and has access to her algorithms, which is good because Dr. K shouldn't be the only expert or she'll retire with it! I was automatically made a patient of Dr. K when I said I wanted the pump, so I don't know how it works when you already have an existing team. I think it is very difficult to change oncologists within MSK, but I wouldn't worry about not having access to Dr. K's expertise since they all work together.
2) After I mentioned the thing about hot tubs, I did look at my Medtronic papers and noticed that it said I shouldn't use them. But there is a surgical oncologist in the FB group who said it is fine with the Medtronic pump, since it is battery-powered. I am going to try to clarify this with Dr. K tomorrow. I'm confused myself!
3) I do jog now and Dr. Kingham said that many of his patients run and live normal lives. He is the one who basically convinced me to get the pump. He said that Dr. Kemeny is like a "strict grandmother" in this regard, but that he does not see any issue with his patients running and that it's important for health. The only issue he has seen is in overweight or obese people, sometimes the pump will turn over and they have to go in and turn it back. That said, when I jog I run with a quick, short stride so as to lessen the impact, and I go pretty slowly, and not for very long distances. I guess you could say I'm compromising between the two opinions, just in case!
4) As far as the physical look of it, I lost all vanity long ago with multiple surgical scars, an ileostomy scar that basically looks like a second belly button, and many bruises all over my abdomen due to blood thinner injections. However, I totally get that as a concern. I don't know who will do your husband's surgery, but Dr. Kingham did mine laparoscopically, which means I just have a small scar under my belly button and a four-inch horizontal scar where the pump was placed on my left abdomen. I have been using Scar Away strips and the scars have definitely lightened over time. Also I am of the opinion that scars prove how tough you are! As far as the protrusion of the pump, it is not too bad and depends on how thin you are. Yes you can see it and feel it, but for me it is not a big deal. If anybody ever saw it and asked about it I would have no problem explaining it to them.
5) I've only gone in once for a pump refill only, since I am currently doing chemo and every time I go in I am getting labs, seeing Dr. K, etc. so it takes longer. The one time I went in just for a refill right before Christmas it didn't take too long. Once you're back in the treatment suite it takes maybe 15-20 minutes for them to empty, fill, and program the pump. I take the attitude that this is a part of my life now, so I make the most of it. The waiting room at 53rd street is pleasant, and the time I went in just for a refill I scheduled it in the evening so I didn't have to miss work. I got dinner, ate it in the waiting room, got the pump filled, and was home by 8 pm. I think you and your husband can make the most of it, maybe even make it into a date night? I know that sounds weird, but your attitude can change the process from an annoying inconvenience to an opportunity to make something fun out of it.

I think you are getting good advice in the FB group to really weigh the pros and potential risks of the pump. It really does depend on how aggressive you want to be. I chose to be aggressive because I am young and felt I could handle it. I will say that my experience has not necessarily been the norm, since my Alk Phos shot up after one full dose of FUDR, and nearly three months later it has not gone down enough for me to get another dose. So I have been getting 5FU only for a few months. I believe Dr. Kemeny is being conservative with me since I already had my resection and this is adjuvant treatment. But it is still frustrating to have gotten in only one dose so far. All that to say, it is not a 100% perfect solution, but to me the recurrence prevention stats were enough to sway me, and I don't regret getting the pump one bit.

rlevin66
Posts: 4
Joined: Wed Nov 14, 2018 11:35 am
Facebook Username: Rebecca Perini

Re: My CRC with liver mets journey

Postby rlevin66 » Mon Jan 21, 2019 1:51 pm

Thank you for sharing with us. My husband (also slim) does, in fact, have the mediport and I agree--it's so hard to even notice unless you are looking! I am glad to hear the pump is not entirely dissimilar. I am sorry to hear that another young couple is going through this, but we too had a really strong response to chemo and are hoping to join the NED community as soon as humanly possible. Keep us posted on your journey. Perhaps we connect our husbands.

Best,
Rebecca

quote="SGNYC"]Hi Rebecca,

We’re also young, NYC-based, at MSK...and husband also Stage IV diagnosed in July 18 - he had single met in liver and lung so didn’t get HAI pump but had a complete neoadjuvant liver response and near complete lung response (they did VATS and small liver resection to quadruple check). Colon resect was successful and he has one round left of chemo, then scans, and then hopeful on to monitoring him like a hawk.

I don’t know if your husband had a mediport put in, But my DH has one which is slightly visible (he’s slim)...but only if you know where to look, and I don’t expect most notice. I’ve been told it’s not entirely dissimilar.

Keeping you in my thoughts and feel free to reach out - I check every few days.[/quote]

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juliej
Posts: 2948
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Tue Jan 22, 2019 8:17 pm

ginabeewell wrote:Maybe this is TMI, but also interested in hearing whether others maintained their period while on chemo? I got it once after my second round of chemo in late October, right on schedule. Then it went away for Nov / Dec, but is back again now after my 7 week chemo break. Everything I read suggested that it would stop, and probably given my age (45) stop for good / put me on the path to menopause - so I guess I've decided to take this as a good sign of my body's determination to get back to normal??

My periods stopped completely after my second round of chemo. I didn't mind since I felt like I had enough to deal with. It was weird though to have to get a pregnancy test before each surgery! About 8 weeks after I stopped chemo, my period returned (along with more hair on my head and clearer skin!). I think you're right about it being a sign of your body's resilience! :D

As far as exercise, I would definitely recommend getting in some prior to surgery. Even walking will use your ab muscles and increase your ability to withstand surgery. Plus, for me, it increased my appetite, which I needed to gain weight. You're right, though: people who are in shape not only recover better post-op but they also heal faster. Make sure you eat enough protein too. Protein shakes are easy to get down.

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 2/1/2019, CEA<1

User avatar
juliej
Posts: 2948
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Tue Jan 22, 2019 8:22 pm

heiders33 wrote:3) I do jog now and Dr. Kingham said that many of his patients run and live normal lives. He is the one who basically convinced me to get the pump. He said that Dr. Kemeny is like a "strict grandmother" in this regard, but that he does not see any issue with his patients running and that it's important for health. The only issue he has seen is in overweight or obese people, sometimes the pump will turn over and they have to go in and turn it back. That said, when I jog I run with a quick, short stride so as to lessen the impact, and I go pretty slowly, and not for very long distances. I guess you could say I'm compromising between the two opinions, just in case!

I also run with the pump (and have for several years now) and don't have any problems. One tip is to wear compression running tights. They hold the pump firmly against your abdomen so it isn't disturbed. I wouldn't advise running with the pump if you're overweight since, as you mentioned, there are problems with it flipping over in those patients.

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 2/1/2019, CEA<1

User avatar
ginabeewell
Posts: 157
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Feb 04, 2019 7:37 pm

We are officially scheduled with Dr Kingham and Dr Kemeny on Feb 18th. They will do a scan and confirm if I am ready for surgery. My NW onc thinks I will want to do one more round of chemo on the 25th, whereas Dr K doesn't think so. But she more or less agreed to it when Dr Stein pushed, and I suppose if the scan suggests otherwise we will have that data.

Does anyone know how many weeks they will want me OFF chemo pre-surgery? I thought someone said 2-4. Just trying to mentally prepare when we might need to be back in NY for that.

I'm a week into my second round back to chemo. My first round was so easy that I barely noticed it. This round is tougher - maybe because Vectibix is back in the mix or maybe just cumulative. My appetite hasn't gone yet, but the GI issues are here, stuff running through my system too fast.

Trying to stay positive and tell myself it's not so bad, I can push through another two rounds before surgery if need be. My husband will be traveling for my next round which has me slightly uneasy.

On the bright side, he's going to LA, and I booked a flight to join him for the weekend since we don't have the kids. He's staying at Shutters on the Beach, a rare treat because his normal hotel is closed for renovation. We get to Santa Monica several times a year for his work, so it is one of "our" places, and we have favorite restaurants, etc. He will have clients there, but I know them, so won't be the worst to have to entertain a bit. We should be able to sneak at least one dinner alone. It will be nice to have the weekend with him and get out of the Midwest weather for a while!

I'll fly back late Sunday night and be ready to chill at chemo on Monday. Then I have a week alone until he returns on Friday.
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (rounds 6-8)
3/27/19 Surgery: HAI pump placement / colon resection; liver resection to follow
CEA 2.6!!


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