My CRC with liver mets journey

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juliej
Posts: 3036
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 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 6/13/2019, CEA<1

Siti
Posts: 46
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: 296
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 (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine 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 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

Siti
Posts: 46
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: 34
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!

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ginabeewell
Posts: 296
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 (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine 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 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

hopefulandstrong
Posts: 40
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: 34
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.

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ginabeewell
Posts: 296
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 (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine 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 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections


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