My CRC with liver mets journey

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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 Aug 19, 2019 5:44 pm

ginabeewell wrote:Does the HAI pump chemo extend beyond the 6 month mop up cycle? Or does that shift to saline at the 6 month mark?

A Medtronic rep told me the devices can go up to 180 days without a refill! When I mentioned this to Sandy, Dr K’s nurse, she all but shushed me out of the office. So it doesn’t surprise me to hear they are testing 3-4 week increments. It would make a big difference to have a cycle longer than 2 weeks if the pump stays in for ~5 years.

Usually it's just the 6 month mop up cycle. Sometimes it's even less if she feels like you're doing well (clear scans). The old Codman pump allowed you to switch to glycerol at that point. (Glycerol is just a thick form of saline.) That made it possible to go 8 weeks between pump refills. I don't know if Medtronic's pump can do that, but it's worth asking. However, if it can go 180 days on pure saline, it sounds like just a matter of time until they stretch out the refill period for NED patients! :D

The two month cycle worked good for me because I had blood work every 2 months anyway. She keeps a close eye on your labs (especially CEA) for the first couple of years.

My Alk Phos was in the very high range after I finished treatment. The Integrative Medicine doc put me on Milk Thistle and that brought me down to the normal range after one year.

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

Siti
Posts: 50
Joined: Thu Aug 01, 2019 10:58 am

Re: My CRC with liver mets journey

Postby Siti » Tue Aug 20, 2019 2:23 am

ginabeewell wrote:I don't know that one is better than another. I just had trouble finding PSK here and happened to be in Hong Kong, so I purchased it there.

My appointment with Dr Kemeney is next Wednesday. I'll keep everyone posted on how that goes!



Hello Gina,

May I ask where in Hong Kong did you buy PSK? I would like to get some for my husband.
How many grams are you taking a day and did you take it long with your chemo treatment?
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild type | BRAF normal
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9

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ginabeewell
Posts: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Aug 22, 2019 10:47 am

Siti wrote:
Hello Gina,

May I ask where in Hong Kong did you buy PSK? I would like to get some for my husband.
How many grams are you taking a day and did you take it long with your chemo treatment?


Honestly, we walked into pretty much every pharmacy in Hong Kong before we ended up finding one that had the PSK. I cannot recall the actual pharmacy where we had success, I do recall it was a relatively larger and more corporate looking one, a chain I think versus the smaller pharmacies that line the streets.

The PSK we got was professionally packaged. I took half the dosage that the label recommended. I did stop taking them a few months ago when I had the HAI pump placed, because I was worried about my system having to process too many supplements, and I knew chances were not good that Dr Kemeny would give me approval for them! But I think I will absolutely resume once I have done my planned cycles of chemo and am trying to maintain my health.

Sorry for my lack of specificity here!!
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

Siti
Posts: 50
Joined: Thu Aug 01, 2019 10:58 am

Re: My CRC with liver mets journey

Postby Siti » Thu Aug 22, 2019 2:15 pm

Not a problem Gina. Thanks for replying :)
Sending over my best wishes and I hope you’re able to beat this disease!
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild type | BRAF normal
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9

AlexandraZ
Posts: 49
Joined: Fri Aug 23, 2019 8:25 am

Re: My CRC with liver mets journey

Postby AlexandraZ » Thu Sep 05, 2019 12:30 pm

How is it going? :)
I've been following this thread and would love to hear how you are doing, Gina!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

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ginabeewell
Posts: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Sep 06, 2019 9:52 am

AlexandraZ wrote:How is it going? :)
I've been following this thread and would love to hear how you are doing, Gina!


Thanks for asking! I have been doing really well.

I feel almost completely healed from my liver resection at this point - I guess I am 7 weeks out at this point? Part of my incision scar still feels a bit sore, that's about it.

What's maybe more interesting is that my first two rounds of chemo after the surgery have been a breeze. It's almost like my body is tolerating the chemo better now that there is less / no active cancer in my body. (I need another resection to finish off tumor removal, but the ones remaining have clearly calcified so between that and my CEA of 0.6 - when I started at 941 - it seems like most of the cancer has been contained for now.)

I was convinced that my first chemo after surgery was a lower dose but they checked me when I went in for my 2nd chemo dose and said no, it was normal. I was shocked because I actually GOT MY PERIOD while I was on this round of chemo. (They told me that 1) I wouldn't have my period on chemo and 2) treatment would probably push me into menopause.) So far, it's returned each time I've had a few weeks off, but it really rocked my world when it came back a few days after chemo. I struggled with infertility for years, so the irony of celebrating my period as a sign that my body is working is not lost on me!!

My second chemo went as well as the first. I had a few days of fatigue but almost no other side effects which is awesome considering how much I struggled with GI stuff for my first 15 rounds.

My dermatologist had me start a higher powered steroid cream, Clobetasol. That has mostly kept my Vectibix rash at bay, although I was only supposed to use it for two weeks and then step down to something less powerful and I haven't. Well, I tried - and the rash came right back, so back to the Clobetasol. Of all the side effects I've had to deal with, the chemo rash has by far been the worst.

I also figured out that my hair has been growing back. I started to use Rogaine before my surgery, and was a little spotty about continuing it. But I just realized a week or so ago that I had an inch or two of new growth. It's curly, so it's giving me some serious volume. I had read that Rogaine worked during chemo - not sure if it did and/or if my chemo break helped it along, but either way happy to have some hair! So far, it doesn't seem to be falling out.

On a personal basis, things continue to be tense for my husband with his narcissistic boss. The latest was an email he received telling him he shouldn't expect a bonus at year end. That's a significant chunk of his compensation - and one we've been counting on, frankly. He needs to get out of there. We talked to an employment attorney yesterday. Contractually, if he is terminated, it is a significantly better situation for him financially than if he leaves voluntarily - like, it could be worth ten times as much when it comes to a buy-out of his shares. So now, he basically has to wait it out until they terminate him, which is an interesting / frustrating situation. Thank goodness I'm feeling good right about now, because the situation SUCKS and we joke that it is really hard when we are both in the dumps at once.
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 Sep 06, 2019 11:02 am

Gina -

I love reading this. So happy for you, and it gives me hope.

My liver is currently resectable, but because of BRAF mutation, they want to do more system treatment before considering. But your story makes me think resection offers other benefits beyond getting to NED. Assuming one can deal with the surgery challenges.

Thanks and congrats!
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.

AlexandraZ
Posts: 49
Joined: Fri Aug 23, 2019 8:25 am

Re: My CRC with liver mets journey

Postby AlexandraZ » Fri Sep 06, 2019 11:53 am

Great! I'm so happy to hear that. Your success as well as Juliej's makes me really want to go to MSK and Dr Kemeny with my boyfriend. They seem to have great success with young and otherwise healthy patients.

I hope you start a blog! I'd be happy to follow you.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

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ginabeewell
Posts: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Sep 06, 2019 3:56 pm

AlexandraZ wrote:Great! I'm so happy to hear that. Your success as well as Juliej's makes me really want to go to MSK and Dr Kemeny with my boyfriend. They seem to have great success with young and otherwise healthy patients.

I hope you start a blog! I'd be happy to follow you.


You totally should! And sooner vs later.

Right now I have a sort of blog on FB. If you PM me I am glad to invite you to my cancer group where I post everything!
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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ginabeewell
Posts: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Sep 30, 2019 6:21 pm

I'm four chemos into treatment since my surgery, and about 9 weeks out from it. My Vectibix rash has returned with a vengeance. I thought I could hold it at bay with a stronger steroid - Clobetasol - but after a few weeks, the rash seems to have worked its way back up to beating it.

On Sunday night, my eye was really bothering me, and that's when I realized the rash had actually broken out INSIDE MY EYELID. I mean, seriously?

I took some Benadryl and Tylenol, which helped. I had chemo the next day, and my oncologist and derm worked together to switch me from Doxycycline to Bactin. But after a few days on Bactin, the rash seemed to get even worse, becoming super itchy (which it has not historically been after initial breakout). So I went back to Doxycycline. No improvement in the rash however.

I feel pretty miserable. My skin is thin and painful to the touch and I'm itchy and I look terrible. I think I just have one more chemo treatment a week from today, and then hopefully a break until my second liver resection. Otherwise, I am not sure I would be able to maintain my sanity. Of all my side effects, this is definitely my worst. That said, I have had almost no other side effects - maybe a single bout of diarrhea per cycle, cleared right up with a single double dose of Imodium. So I suppose I should not complain - but this rash is really bumming me out.

I've been crashing and burning on a huge work project past two weeks, and am in NY today as the presentation is tomorrow. My CEO's plane is delayed so she won't land until after midnight - and then she will want to work on the last edits to the deck, ACK. She's on West Coast time. I think I may head to the hotel and take a nap!
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 Sep 30, 2019 7:25 pm

ginabeewell wrote:What's maybe more interesting is that my first two rounds of chemo after the surgery have been a breeze. It's almost like my body is tolerating the chemo better now that there is less / no active cancer in my body. (I need another resection to finish off tumor removal, but the ones remaining have clearly calcified so between that and my CEA of 0.6 - when I started at 941 - it seems like most of the cancer has been contained for now.)

I had the same experience after my first surgery. I don't know if it was because my body learned how to tolerate the chemo, or if it had to do with a lower tumor burden. But, whatever the reason, it was a welcome relief. BTW, congrats on your super-low CEA! You are doing great! :D

ginabeewell wrote:I feel pretty miserable. My skin is thin and painful to the touch and I'm itchy and I look terrible. I think I just have one more chemo treatment a week from today, and then hopefully a break until my second liver resection. Otherwise, I am not sure I would be able to maintain my sanity. Of all my side effects, this is definitely my worst. That said, I have had almost no other side effects - maybe a single bout of diarrhea per cycle, cleared right up with a single double dose of Imodium. So I suppose I should not complain - but this rash is really bumming me out.

The changes to my appearance were one of the hardest things about treatment. Everyone noticed my blistered hands (and commented on it :roll: ), so I started hiding my hands as much as possible. Blotchy skin, bruises everywhere, and thinning hair made me feel less than confident, to say the least. But I didn't really cry until my toenails peeled off and left a bloody, gooey mess. Then I completely lost it for about two days. Remember, though, that these things are temporary. It's the hardest thing to realize right now, but it's true. Hopefully, you'll get a break soon for the second liver resection and your skin can recover.

Oh, and screw your husband's narcissistic boss!!! :evil: What a cold-hearted piece of shit! I'm glad you talked to an employment attorney. Fingers crossed that everything turns out right!

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

Mohrfamily
Posts: 172
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Tue Oct 01, 2019 10:16 am

Gina refresh my memory but how long was your chemo break after your first surgery for the pump and colon resection. And roughly how long before it was decided to resection of the liver.
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

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ginabeewell
Posts: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Oct 01, 2019 11:50 am

Mohrfamily wrote:Gina refresh my memory but how long was your chemo break after your first surgery for the pump and colon resection. And roughly how long before it was decided to resection of the liver.


Didn’t have much of a break after at all. They gave me pump chemo (but without systemic which they added moving forward) about 10 days after they placed the pump. Then I did systemic again 2 weeks later.

My pump was placed 3/27, and my first resection was mid-July. So three and a half months. I had 7 chemos in between: 4 pump chemos and 3 regular. And assuming no surprises on my CT scan, I’ll probably have my next surgery end of October / early November after 5 more chemos (one more to go next week).
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: 322
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Oct 01, 2019 11:58 am

juliej wrote:I had the same experience after my first surgery. I don't know if it was because my body learned how to tolerate the chemo, or if it had to do with a lower tumor burden. But, whatever the reason, it was a welcome relief. BTW, congrats on your super-low CEA! You are doing great! :D


I mentioned this to my oncologist and she said it was a function of lower tumor burden / healthier liver. I’ll take it!!

Thankfully my husband had a constructive conversation with his boss. He sent a note beforehand, and that cued everyone into the fact that he was thinking of leaving. The other partners freaked out at the idea of that, and I think had some influence on the big boss. That intercession coupled with the heart to heart seemed to help. I think my husband was able to finally illuminate to his partner why partner’s wife was mad at him - because partner had him try to talk her down, and then switched his story, making my husband look like a lier. Once that light went on, I think partner was better able to hear him. Now it just remains to be seen if the change in attitude will be sustained. But at least my husband doesn’t need to look for a job immediately.
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

AlexandraZ
Posts: 49
Joined: Fri Aug 23, 2019 8:25 am

Re: My CRC with liver mets journey

Postby AlexandraZ » Thu Oct 03, 2019 3:33 am

I understand the Vectibix blues so well!!! Although I haven't had it myself, so maybe I shouldn't say that. But just seeing my bf go through that crap is awful so I can't imagine what you're going through! You are amazing though, I so admire your positivity and drive. It's only natural that there are some sh*tty days.

Interesting about the chemo! I'm happy to hear that. Actually my bf had a similar experience. His first chemo was an absolute disaster, I had to call an ambulance because he got terrible chest pains and we thought he had a blood clot or heart damage or something. But after lots of testing we found out it was most likely his lung mets reacting to the chemo. As his CEA came down (from 70.500!!) and his tumor burden diminished, it became MUCH more tolerable.

Anyway, just wanted to let you know a Danish internet friend is thinking of you and wishing you the best!! You got this.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!


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