My CRC with liver mets journey

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ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Sep 15, 2020 10:27 pm

Thanks, all for all the support for my husband! We both appreciate it. They are still negotiating, we are hoping for the best there.

In other news, i had opportunity to meet my new NW oncologist on Monday: Dr Mary Mulcahy who runs the GI Cancer department for them.

I was a little hesitant meeting her, as i have heard she isn't great with Stage 4 patients, but I left the appointment feeling like it would work if she is willing to partner with Dr Kemeny - and we keep letting Dr K call the shots.

Interestingly, she asked about who had mentioned surgery and why. Her take is that she would also not recommend surgery for me (the note we got back from Kemeny after tumor board was short and without context - "no surgery yet, maintain chemo.")

However, she said her take was that i had a "complete pathological response" to the chemo based on the PET - and why would we want to operate when there is nothing there? She felt one of the mets was poorly located and would require removal of a full lobe, which felt overly aggressive since no active cancer.

I told her that i worried we were moving toward a "chemo for life" plan, and she stated that she thought that was my best option right now. I think MSK is not favorable to maintenance chemo in general, so i am interested in their take. I am realizing my CEA is a super sensitive marker for me - looking back, we saw it start to rise in January, and when they looked back at those scans could see barely visible growth starting. I think I could maintain without chemo if I was checking CEA regularly.

For now, she decided to maintain me on 5FU and Vectibix only - i dropped Irinotecan last cycle, because i could feel my body needed a bit of a break, and it felt less risky to cut the IRI than do a chemo break overall. I couldn't tell much difference for most of the cycle but then had a great weekend. So i hope this will be much more sustainable if that's what the oncologists ultimately recommend.

In other news, my cancer buddy with pancreatic cancer just had a scan which revealed "innumerable growths" in her lungs. Her last scan was clean, but her CA-199 (like CEA) was rising, so they were worried something was up. I guess this is it. She's now looking at trials. UGH. I feel so terrible for her, i wish there was something she could do.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

lovelife789
Posts: 160
Joined: Thu Aug 24, 2017 5:28 am

Re: My CRC with liver mets journey

Postby lovelife789 » Wed Sep 16, 2020 6:34 am

I'm glad the new doctor works out for you. A lot of respect for your attitude on the potential "chemo for life" direction. I'm sure it is just what they see right now, everything changes so quickly and they don't have a crystal ball. I was also given by my Dr at MSK a 'definitely' chemo for life option, I didn't take it well ...to say the least. :) :)

You are right, MSK is not favorable towards maintenance chemo. I also go to MSK and have asked for it, they wouldn't give me claiming there isn't enough scientific data to suggest its effectiveness (never understand?!). But I have asked about Metronomic Chemo (low dosage chemo), they sounded more receptive to the idea. Not sure if 'maintenance chemo' is the buzz word there or what :?

Good luck! Btw thank you for the tips on icing the face during vectibix to keep the breakouts down. That's so smart of you. I remember putting ice on my forehead for fever during Erbitux a while ago and my forehead had visibly less breakouts, but I didn't think about the correlation between ice and breakouts :lol:

Lovelife
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

User avatar
ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Sep 23, 2020 12:35 am

lovelife789 wrote:Btw thank you for the tips on icing the face during vectibix to keep the breakouts down. That's so smart of you. I remember putting ice on my forehead for fever during Erbitux a while ago and my forehead had visibly less breakouts, but I didn't think about the correlation between ice and breakouts :lol:

Lovelife


Thanks for sharing! I am really curious if anyone else will experience the same. I sure hope so!

Today I actually had an hour-long phone call with - guess who? The brand manager who oversees Vectibix! I had reached out via email to a contact who put me in touch with her, and then i emailed her to describe my icing trick. I asked her if anyone had ever shared with her, and she said no, but was clearly interested on not just a business but on a human level. It was a great conversation; I walked away so impressed and inspired to think about whether I could play a bigger role in figuring out if this is really a thing and spreading the word.

Sent an email to MSK with about four questions and they answered only one of them - confirming when to schedule my scan. Getting frustrated. I don't want my local doctor to be making calls about my treatment by default because I can't get Dr K to address whether I should reinstate irinotecan my next 2 rounds.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?


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