My CRC with liver mets journey

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ginabeewell
Posts: 346
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue Oct 22, 2019 5:44 pm

boxhill wrote:So everyone is telling you you are a badass and a warrior and invincible and you are...but maybe you feel the need to live up to it and never give in? But you know, you need to be able to acknowledge fatigue and the need to rest and heal and act on it. It is not "giving in." It is being realistic and mature. You are in this struggle for the long term, not to prove how fast you can bounce back from a single surgery.

Yes, you can do it. But it's going to take time. We are all in this for the long haul.

Best of luck and big hugs to you.


Totally and i promised I would be gentle and patient with myself, give myself time to heal, etc.

I think two other things going on:
1) I was pissed at my mom, dad and sister because earlier in the day I had texted about pain and didn’t hear back from them. And that was after a weekend of my mom saying she or my dad would text something and it didn’t come. I needed to be more clear that I needed them available on the “bat phone” first few days because I am alone here and my poor husband can’t do it all.
2) I think I was expecting to come out of this surgery all yay and triumphant, but I had just read Julie Yip-Williams blog, and you realize you still have a long journey ahead of you before you can feel like you “beat” cancer. I thought I would be shouting “I am NED!” from the rooftops, but found myself in almost as scary a position as I had been a year ago. So physically I was doing great and being patient with how quickly I pushed myself to walk etc - but I was expecting a successful surgery to also pack a huge emotional wallop; and it didn’t measure up to my expectations.

(By the way, that second tendency is long-rooted in me: I keep motivated by a long term light at the end of the tunnel, but I don’t spend nearly enough time celebrating where I am, because there’s always a next tunnel!)

The good news is that I had wonderfully constructive conversations with each of my family members that make the meltdown worthwhile.

Oh and also: last night I got my period, revealing to me that at least PART of my meltdown was driven by garden variety PMS!!!
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

cartech78
Posts: 66
Joined: Thu Oct 25, 2018 6:22 pm

Re: My CRC with liver mets journey

Postby cartech78 » Tue Oct 22, 2019 8:37 pm

Congratulations Gina! I heard on Facebook it went well and im so happy to hear your NED! Im close but not quite there yet! I see Dr.kingham Monday about surgery. Good luck on your recovery!
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2018 also found 20 more small tumors on liver scans missed
7/2/2018 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
8/5/2018- Pet scan- Dr.Kemeny and Dr.Kingham think ive had complete response from pump. Want me to do a little more chemo to be safe.

boxhill
Posts: 387
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Wed Oct 23, 2019 9:24 pm

Oh god, I read the Julie Yip Williams blog shortly after I was diagnosed/had surgery, and I wouldn't recommend it. I know a lot of people find her inspiring, but it was too intense for me, at least at that time. It did not help me maintain my equanimity and sense of proportion. She died a couple of days after my surgery, I think I was still in the hospital. Reading it a couple of weeks later was not a good idea. For me, anyway. It pulled me towards a very dark place, if I let it. Which I tried not to.

It's good that you are able to figure out what's affecting your mood. Remember that you don't have to be a depressed mess, but you also don't need to be a hero! :D
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
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

User avatar
ginabeewell
Posts: 346
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Wed Oct 23, 2019 9:58 pm

cartech78 wrote:Congratulations Gina! I heard on Facebook it went well and im so happy to hear your NED! Im close but not quite there yet! I see Dr.kingham Monday about surgery. Good luck on your recovery!


I’ll be back on Monday too - maybe we can meet while you’re there? Per will be with me, you’ll probably recognize him. He will be the one knocking himself out to be a good caretaker. ; )

boxhill wrote:Oh god, I read the Julie Yip Williams blog shortly after I was diagnosed/had surgery, and I wouldn't recommend it. I know a lot of people find her inspiring, but it was too intense for me, at least at that time. It did not help me maintain my equanimity and sense of proportion. She died a couple of days after my surgery, I think I was still in the hospital. Reading it a couple of weeks later was not a good idea. For me, anyway. It pulled me towards a very dark place, if I let it. Which I tried not to.

It's good that you are able to figure out what's affecting your mood. Remember that you don't have to be a depressed mess, but you also don't need to be a hero! :D


I had been avoiding it for exactly the same reason. So what made me decide to flip there now, just days after surgery, well I cannot for the life of me explain it. In some sick way I was probably hoping to find an aha, like, “Oh she did it THIS way and I’m doing it THAT way - and that’s a sign of why my treatment will work when hers didn’t.”

Yeah. No.

But once I started to read her amazing writing, I just couldn’t stop. And I do think I walked away with some new thoughts, and a lot of her approach reconfirmed why I embarked on a different path entirely (continuing to work, refusing to use fight or war analogies etc). So at least some good came out of it.

But yeah. Would not recommend reading as a patient. That was not me using my best judgement!!
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

Mohrfamily
Posts: 182
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Thu Oct 24, 2019 4:44 am

I agree with boxhill! You shouldn't feel ashamed or anything of that nature for needing some R&R. It took my husband over a year to understand that needing the rest is not a weakness, and he's done better at taking cues from his body on what he should do whether its relax inside watching Halloween while the kids are at school or walk up and down the drive way or even work all day taking apart his truck and putting it back together.

As much as you all need to fight, there's a time for everything and that includes (guilt free) rest.
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

hopefulandstrong
Posts: 53
Joined: Fri Apr 19, 2019 7:11 pm

Re: My CRC with liver mets journey

Postby hopefulandstrong » Thu Oct 24, 2019 6:12 am

Gina -

Your journey is such an inspiration to so many of us. Not just your courage and persistence and willingness to share vulnerability, but the love that clearly surrounds you, on this board and beyond. I truly believe that love is key to this (becoming better at love is also one of the "gifts" of this experience). So, in that spirit I'm sharing the mantra that popped into my head when I was diagnosed in January. I was Lucky in that I was able to have the colon re-section almost immediately, but that meant a week in the hospital with all the wheeling around to CT scans, MRI's, pre-op, post-op and so on. We all know the drill. During all that wheeling what I kept repeating -- seemingly involuntarily - was "love is overtaking me." It's the title of an Arthur Russell song, which has some special meaning related to my son. But really, it's the idea of being overtaken by love -- in every possible space, even ones we don't know about -- that sticks with me, and to this day, is how I start almost every day in meditation. I wish this for you. Love -- and bravery and self-advocacy, and persistence -- have pushed the cancer out, leaving room for even more love.

Recover in love.

JC
54, female
1/8/19 DS Stage 4 with Liver Mets; Successful Colon Resect
2/18/19 Started Folfox -- CEA 70
5/8/19 - BRAF mutation -- switch to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
8/29 - CEA jump to 30-- scans reveal liver spread, though still confined. triplet therapy abandoned; some concern about PIC3 mutation interfering with BRAF treatment
9/1 - 10/4 -- no treatment
10/4 -- folfoxfiri to stem further progression; pump placement in January (hopefully)

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ginabeewell
Posts: 346
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Oct 24, 2019 2:36 pm

hopefulandstrong wrote:Gina -
During all that wheeling what I kept repeating -- seemingly involuntarily - was "love is overtaking me." It's the title of an Arthur Russell song, which has some special meaning related to my son. But really, it's the idea of being overtaken by love -- in every possible space, even ones we don't know about -- that sticks with me, and to this day, is how I start almost every day in meditation. I wish this for you. Love -- and bravery and self-advocacy, and persistence -- have pushed the cancer out, leaving room for even more love.

Recover in love.

JC


Thank you - I love this so much - the idea that love is overtaking me. I’m going to add this to my list of mantras, and as a voiceover to the imagery I call to mind in quiet moments: thousands of teeny stars flooding into my body to gently nip the cancer away.

The presence of love in my life since diagnosis has been both broader and deeper. And this treatment has healed me in ways that expand way beyond the cancer itself.
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: 346
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sat Oct 26, 2019 9:13 am

I’ve been readmitted to MSK. We came in yesterday afternoon after I woke up in severe pain and was having trouble breathing.

A CT scan revealed fluid accumulating around the bottom of my right lung, maybe a small blood clot too, the latter of which my surgeon felt was clinically insignificant but worth treating anyway since I’ve had clots before.

Now we are waiting for radiology to bring me back.

In the meantime I went to the bathroom and had major pain walking back. Ouch!
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

AmyG
Posts: 275
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Sat Oct 26, 2019 10:48 am

Well that's some bullshit.

You get better fast, you hear?
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

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ginabeewell
Posts: 346
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sat Oct 26, 2019 1:50 pm

I’ll do my best! Heading into my procedure right now.
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: 61
Joined: Fri Aug 23, 2019 8:25 am

Re: My CRC with liver mets journey

Postby AlexandraZ » Sat Oct 26, 2019 8:06 pm

Oh no! Get better soon.

How will they treat the fluid by your lung?

Hugs from Denmark! xxx
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!

AmyG
Posts: 275
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Sat Oct 26, 2019 8:08 pm

ginabeewell wrote:I’ll do my best! Heading into my procedure right now.


Well did they fix you?

Hope you're feeling alright, eat all the things as soon as you can!!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

User avatar
ginabeewell
Posts: 346
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sun Oct 27, 2019 5:33 am

AlexandraZ wrote:Oh no! Get better soon.

How will they treat the fluid by your lung?

Hugs from Denmark! xxx


They wanted to place a drain - drain what they could during the procedure and then leave it in place for future draining.

Because of the location of the fluid both in front of and behind my lung, they had to place two drains. They drained about 1/4 liter of fluid during procedure.

I was expecting to feel much better right after, but I was in a lot of pain. My back kept seizing - probably because I’ve been walking all hunched over all day trying to protect it. They kept me in the PACU for hours trying to stabilize my pain and vital signs. But I’m in a normal room now, so I think / hope I’m through the worst of it.
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: 53
Joined: Fri Apr 19, 2019 7:11 pm

Re: My CRC with liver mets journey

Postby hopefulandstrong » Sun Oct 27, 2019 8:39 am

Sending love and thoughts of swift recovery
54, female
1/8/19 DS Stage 4 with Liver Mets; Successful Colon Resect
2/18/19 Started Folfox -- CEA 70
5/8/19 - BRAF mutation -- switch to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
8/29 - CEA jump to 30-- scans reveal liver spread, though still confined. triplet therapy abandoned; some concern about PIC3 mutation interfering with BRAF treatment
9/1 - 10/4 -- no treatment
10/4 -- folfoxfiri to stem further progression; pump placement in January (hopefully)

boxhill
Posts: 387
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Mon Oct 28, 2019 11:21 am

Keeping my fingers crossed for you. Any idea why this happened?
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
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable


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