My CRC with liver mets journey

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ginabeewell
Posts: 464
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

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ginabeewell
Posts: 464
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?

FightCRC
Posts: 54
Joined: Fri May 25, 2018 10:39 pm

Re: My CRC with liver mets journey

Postby FightCRC » Sun Sep 27, 2020 8:07 pm

ginabeewell wrote: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.


What I'm about to say is strictly my observation, as someone who researched a great deal about Dr. Kemeny, and eventually became her patient.

And that's this: She is tireless. She is heroic. There is no one who is better with fighting liver mets. But...I've seen many, many instances where once it appears her expertise may no longer be a significant determinant in the patient's outcome...she turns her attention to those who still have a meaningful chance to be saved. Namely, new patients who need her help.

So we understood this going in and accepted those terms. Especially since if she wasn't like this, we probably wouldn't have had the chance to become her patient in the first place. When it came to HAI, we were all in; we were going to win or lose with her. No regrets. But anything beyond that, also meant we had to have other options lined up, to not have all our eggs in one basket. So we were prepared to pivot as needed.

You may need to pivot. As your disease is still limited to the liver, and MSK advises you that resection is not possible due to location, I highly recommend a consult with Dr. Yuman Fong at City of Hope. He's been able to help patients with difficult liver profiles that MSK couldn't. Certainly, there are no guarantees. But it's definitely worth getting Dr. Fong's take. We're the only CRC patients I've come across who had both Dr. Kemeny and Dr. Fong on their team, so have a lot of experience with both. Feel free to PM if you have any questions. All the best.

kandj
Posts: 301
Joined: Sun Sep 27, 2015 11:29 am

Re: My CRC with liver mets journey

Postby kandj » Sun Sep 27, 2020 11:07 pm

ginabeewell wrote: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.


have you not had your every two months video conferences with her? If so, and this is an in between issue, I would call and follow up. I think some of the messages are being missed or not fully addressed. we have had this issue as well. But I am not very patient, so I followup if I haven not heard an answer in a few days. DH has had a recurrence in the adrenal gland (They weren't sure if they got it all last time before they had to abort due to a heart issue) and they have been pretty on top of it. She took it to the thursday group, surgery wasn't too keen to try but IR and Radiation Oncology were. My husband has had SBRT on the liver before so we went with that. He's been -1/2 (and a lung one aborted, had this last one aborted at the end and also got to have a minor heart attack on top of it, hence the -1) on IR so we decided that would be a last resort again. When he had his liver recurrence it was not a surgical option due to the location of one. So radiation was offered as an option and it worked well. Almost 3 yrs since that. Of course they have to be able to see them to shoot at them, so it might not be an option for you right now.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

rp1954
Posts: 1536
Joined: Mon Jun 13, 2011 1:13 am

Re: My CRC with liver mets journey

Postby rp1954 » Sun Sep 27, 2020 11:50 pm

lovelife789 wrote:... was also given by my Dr at MSK a 'definitely' chemo for life option, I didn't take it well ...to say the least.
... 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.
Lovelife

Metronomic chemo papers published in asia often used chrono modulated daily oral chemo (UFT), often modulated with CEA targetable PSK, maybe titrated leucovorin, and/or sometimes with CA199 targetable cimetidine (usually RAF/RAS mutant).

Edward Lin modulated daily capecitabine with celecoxib with some startling success, that appeared easy for us to observe and enhance in carefully poised bloodwork, but time consuming in experimentation for more enhancements.

Other generic immune modulators, chemo modulators and cancer adjuncts are less well covered by expensive testing, targeting, documentation, combination and consensus in Western oncology. Thus, right now, they require lab backup, individual skills, experience and coordination to more successfully personalize their combined uses for patients to gain multiple benefits in QoL and cancer control. Often std-of-care robots (insurance, Dr. No, etc) are a big hurdle.

For the individual patient, the question is whether they can find 2-3 doctors with enough skills, experience and cooperation to make oral chemo have mild side effects with superior cancer control, in at least some aspect like new metastases.
Last edited by rp1954 on Mon Sep 28, 2020 1:32 am, edited 1 time in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Sep 28, 2020 1:31 am

FightCRC wrote:
What I'm about to say is strictly my observation, as someone who researched a great deal about Dr. Kemeny, and eventually became her patient.

And that's this: She is tireless. She is heroic. There is no one who is better with fighting liver mets. But...I've seen many, many instances where once it appears her expertise may no longer be a significant determinant in the patient's outcome...she turns her attention to those who still have a meaningful chance to be saved. Namely, new patients who need her help.

So we understood this going in and accepted those terms. Especially since if she wasn't like this, we probably wouldn't have had the chance to become her patient in the first place. When it came to HAI, we were all in; we were going to win or lose with her. No regrets. But anything beyond that, also meant we had to have other options lined up, to not have all our eggs in one basket. So we were prepared to pivot as needed.

You may need to pivot. As your disease is still limited to the liver, and MSK advises you that resection is not possible due to location, I highly recommend a consult with Dr. Yuman Fong at City of Hope. He's been able to help patients with difficult liver profiles that MSK couldn't. Certainly, there are no guarantees. But it's definitely worth getting Dr. Fong's take. We're the only CRC patients I've come across who had both Dr. Kemeny and Dr. Fong on their team, so have a lot of experience with both. Feel free to PM if you have any questions. All the best.


This is interesting. I haven’t been able to do pump chemo since late May; which makes me wonder if that’s why she’s losing interest and not just that I’m not there live.

I’ve read good things about Dr Fong; perhaps time to make a call.

Thank you - I really appreciate this perspective!!
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?

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Sep 29, 2020 3:17 pm

ginabeewell wrote:
This is interesting. I haven’t been able to do pump chemo since late May; which makes me wonder if that’s why she’s losing interest and not just that I’m not there live.

I’ve read good things about Dr Fong; perhaps time to make a call.

Thank you - I really appreciate this perspective!!


Got a note back from Dr Kemeny, who apparently is aligned to Dr Mulcahy's recommendations to stick with lighter chemo and skip the pump chemo. My next scan is 10/19. Will set up a follow up appointment and hoping to hear more after that.

In other news, we got a Peloton last week, and I finally had a chance to get onto it. The idea of a workout I could sit for was appealing at my present state of fitness. I've done two rides; the first almost killed me, the second was a little better. I'm going part-time at work (finally) as of 10/1, so my hope is that each day I will be able to sleep in a little bit more and get some activity in before work. Fingers crossed.
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?

Claudine
Posts: 440
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My CRC with liver mets journey

Postby Claudine » Wed Sep 30, 2020 9:55 am

Yay on the Peloton! My husband is an avid cyclist and exercising regularly (as much as physically possible, of course) has helped him tremendously throughout the whole ordeal.
I also have a doctor cousin who's good friend with her hospital's onc. He started an exercising program for his patients, after noticing how much better those who did even moderate exercise responded to treatment.

Good luck with the scan XXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Oct 21, 2020 10:05 pm

Maybe the Peloton is working - my scan came back and it seems (?) to look good!

I didn't speak with a doctor yet, but here is what it said:

"No suspicious focal hepatic lesion is identified to suggest new residual metastatic disease. All the major hepatic vessels remain patent. The previously described ill-defined hypoattenuation is no longer well visualized."

I think the first sentence means: "No new tumors." But does the last sentence suggest that the two spots that were there are no longer visible?
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?

Claudine
Posts: 440
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My CRC with liver mets journey

Postby Claudine » Thu Oct 22, 2020 8:00 am

That’s totally how I’d read it. Fantastic!! :D :D :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

boxhill
Posts: 643
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Fri Oct 23, 2020 1:54 pm

I agree with Claudine. GREAT NEWS!! :)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Lee
Posts: 6166
Joined: Sun Apr 16, 2006 4:09 pm

Re: My CRC with liver mets journey

Postby Lee » Fri Oct 23, 2020 4:32 pm

I too agree, congratulations

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Oct 23, 2020 6:56 pm

Hooray! I have my next appt on Monday, will see how that goes and what they think is next for me.

In other news, my hair is on its last legs. I went to a salon for a wig consult today. I tried a normal human hair Follea (sp?) wig and also a Cesare Ragazzi prosthetic hair piece. The latter was fascinating: it’s 3D printed to the shape of your head and actually non-surgically grafted (aka glued) on right over your hair! (Although she told me many just use it as a clip in.) Then you can wash and style it like normal hair. It looks super realistic. And I could see myself using it in a post Cancer life!!

It’s more than a normal wig but basically the same cost as the surprise bonus I got last week on my 25th anniversary with my company. So maybe it’s a sign!

Actually the best part is that she thinks they will accept the donation of my daughter’s hair to make it. She’s been growing it out to donate since the start of Covid. I’m not sure it will be long enough but I hope so! She has great hair and I think she would be so proud to do it. : )
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?

User avatar
beach sunrise
Posts: 303
Joined: Thu Mar 05, 2020 7:14 pm

Re: My CRC with liver mets journey

Postby beach sunrise » Sun Oct 25, 2020 1:53 pm

Hi Gina, I know its devastating when your hair is looking rough. Want to mention maybe at your cancer center they have vouchers for wigs. Mine does for certain brands. I filed for a voucher to not have that brand limitation. I can't remember how much $$$ the voucher is for but every lil bit helps. We'll see how it unfolds when I go back for appt.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"


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