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 » Thu Aug 20, 2020 8:03 pm

Back with an update.

Did 5 rounds of FOLFIRI + Vectibix, and my last scan was stable. Did a PET this morning to see if anything is active. My CEA is low so I am hoping not in spite of no change to tumor size.

I’ll have Kemeny next week Wed so will be interesting to see what she thinks. My oncologist here says she hopes I might be operable if the PET looks good - and said if it were her she would drive to NY for the surgery.

In other news, family therapy has been good for things with stepdaughter. Therapist diagnosis is that she’s afraid of the cancer and me dying, and is using avoidance to just not have to deal with it. It’s two steps forward one step back but making headway.

And my husband’s partner of 20 years and the best man at our wedding fired him today. Why? Because he has not been “all in” since my diagnosis (in spite of working 60-70 hour work weeks, traveling when I had surgery, etc). Happy clients and happy team but they don’t count because partner has his nose out of joint that my husband loves me more than his job.

I guess you really do find who your true friends are when you get cancer.
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?

AlexandraZ
Posts: 178
Joined: Fri Aug 23, 2019 8:25 am

Re: My CRC with liver mets journey

Postby AlexandraZ » Fri Aug 21, 2020 8:15 am

ginabeewell wrote:Back with an update.


And my husband’s partner of 20 years and the best man at our wedding fired him today. Why? Because he has not been “all in” since my diagnosis (in spite of working 60-70 hour work weeks, traveling when I had surgery, etc). Happy clients and happy team but they don’t count because partner has his nose out of joint that my husband loves me more than his job.

I guess you really do find who your true friends are when you get cancer.



Happy to hear the good news, Gina!! Sounds like you're in good hands.

About your husband getting fired....some people just suck. I've been so surprised too, since my boyfriend's diagnosis. Some people are such jerks and do and say things that are absolutely inexcusable. I'm sorry you're having to deal with this. I admire your strength through all of this. It's really so unfair!
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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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Fri Aug 21, 2020 4:11 pm

ginabeewell wrote:My oncologist here says she hopes I might be operable if the PET looks good - and said if it were her she would drive to NY for the surgery.

First - let me react to the good news! YAHOO!!! Praying you're headed to NYC for the surgery soon!

ginabeewell wrote:And my husband’s partner of 20 years and the best man at our wedding fired him today. Why? Because he has not been “all in” since my diagnosis (in spite of working 60-70 hour work weeks, traveling when I had surgery, etc). Happy clients and happy team but they don’t count because partner has his nose out of joint that my husband loves me more than his job.

What an incredible arsehole!!! "Hey, thanks for the support and understanding after I gave you 20 years of dedicated work and commitment!" NOT!

I hate this part of the cancer "journey." I hate finding out that my so-called friends/co-workers/acquaintances are really cold, selfish bastards. I think some of them are just afraid of the big C and can't confront their fears. I think others are narcissists and don't want your situation (or, in this case, your wife's situation) to steal away their own importance. I think others are just clueless and don't know what to say and so say nothing. The worst thing though is realizing that some people just don't care about you as much as you thought they did.

However, I am sure that people turn their backs on us because of their own issues. It's not about me or you or anyone else with cancer. It isn't personal. This is about them, their inadequacies, their deficiencies, not you. You are a rock star! You (and I and everyone on this forum) are legends; we have done what a lot of people can't imagine. Don't let negative people take away what you have achieved.

I hope your husband finds an even better job in the near future!

xo,
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 12/18/2019, CEA<1

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

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Aug 21, 2020 8:20 pm

Thanks Julie and Alexandria!

He’s a narcissist, no question.

My husband is a creative genius, and I know he will land on his feet. But it’s awful and scary, and as his wife I am furious for him.
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?

BUD2016
Posts: 60
Joined: Sat Sep 10, 2016 3:25 pm

Re: My CRC with liver mets journey

Postby BUD2016 » Sat Aug 22, 2020 9:13 am

Hi Gina,

Thank you for your posts. You are a very good, strong and caring person. This is really good news that your onc has a plan for you to operate further. Best wishes and all good vibes sent to you from Europe.

On a topic of what happened to your husband, yes, I have been in a similar situation and it is true that generally no one cares that you are a caregiver. People probably care more if one has young kids, etc. But no one truly knows what an active role and how difficult it is to be a caregiver for a cancer patient. Especially, if the cancer patient depends also financially on caregiver. I have been twice in that role.

But good news is - while I was in the care giver role, the so called Board has tried to kick me out from the sale of the company and pretended I did not exist. Did not happen. They are down the drain now. And I am in a good place.

Keep strong, keep safe, keep positive, your husband will surely be upwards again as professional and talented and caring people are what makes us to re-bound.

Best wishes to you all.
09/2016: Mom dx/rectal cancer
10/2016: Open surgery. T3N0/Grade 2
11/2016: PET/CT scan shows 5 liver mets in both lobes
11/2016: FOLFOX + Avastin started on her 71st birthday
KRAS gen 2 G13D mutant, BRAF Negative, MSS
03/2017: Oxi stopped after 9th tx, 5FU cntd. CT scans w/ contrast every 2 months - small shrinkage/stable
05/2017: PET/CT progression, started FOLFIRI + AVASTIN
07/2017: MRIs/CT stable
09/2017: MRIs/CT - min progression
09/2017: FOLFIRI + CYRAMZA
11/2017: left us

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

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Aug 24, 2020 7:01 pm

Thanks to all of you for the words of encouragement and support. We are continuing to try to get a better picture of what our future looks like and it’s clear that the partner is really trying to punish my husband. It’s pretty awful.

In better news, my PET scan results came back today. No activity in the liver / it’s all been resolved “consistent with treatment”. And no new activity.

So, not sure what that means for treatment, but surely good news. I have an appt with Kemeny on Wed.
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?

Mbm51482
Posts: 1
Joined: Sat Feb 22, 2020 9:06 am
Facebook Username: Mmartin

Re: My CRC with liver mets journey

Postby Mbm51482 » Tue Aug 25, 2020 7:50 pm

ginabeewell wrote:Thanks to all of you for the words of encouragement and support. We are continuing to try to get a better picture of what our future looks like and it’s clear that the partner is really trying to punish my husband. It’s pretty awful.

In better news, my PET scan results came back today. No activity in the liver / it’s all been resolved “consistent with treatment”. And no new activity.

So, not sure what that means for treatment, but surely good news. I have an appt with Kemeny on Wed.


Hi Gina- question - you have an HAI PUMP pump right? How come they did not give more pump chemo?

Glad you're scan was good!!!

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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 Aug 25, 2020 10:40 pm

Mbm51482 wrote:
ginabeewell wrote:Thanks to all of you for the words of encouragement and support. We are continuing to try to get a better picture of what our future looks like and it’s clear that the partner is really trying to punish my husband. It’s pretty awful.

In better news, my PET scan results came back today. No activity in the liver / it’s all been resolved “consistent with treatment”. And no new activity.

So, not sure what that means for treatment, but surely good news. I have an appt with Kemeny on Wed.


Hi Gina- question - you have an HAI PUMP pump right? How come they did not give more pump chemo?

Glad you're scan was good!!!


I had it once or twice when I resumed treatment, but my liver enzymes have been too high most of the past few rounds to qualify for it. I think my last pump chemo was in May...
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?

Lee
Posts: 6096
Joined: Sun Apr 16, 2006 4:09 pm

Re: My CRC with liver mets journey

Postby Lee » Thu Aug 27, 2020 8:34 pm

ginabeewell wrote:And my husband’s partner of 20 years and the best man at our wedding fired him today. Why? Because he has not been “all in” since my diagnosis (in spite of working 60-70 hour work weeks, traveling when I had surgery, etc). Happy clients and happy team but they don’t count because partner has his nose out of joint that my husband loves me more than his job.

I guess you really do find who your true friends are when you get cancer.


That is sooo wrong what happened to your husband, I am so sorry. Is there any legal recourse you can take?

Yes you really do find out who your friends are. I sure did. I had many friends step up to the plate for me. One friend I dropped, she was clueless and was only concerned about herself. Not what I was going through. Personally, I don't believe she wanted to hear the details. Don't regret that decision.

Congratulation on a good follow up.

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

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Aug 28, 2020 7:29 pm

Lee wrote:That is sooo wrong what happened to your husband, I am so sorry. Is there any legal recourse you can take?

Yes you really do find out who your friends are. I sure did. I had many friends step up to the plate for me. One friend I dropped, she was clueless and was only concerned about herself. Not what I was going through. Personally, I don't believe she wanted to hear the details. Don't regret that decision.

Congratulation on a good follow up.

Lee


Thanks Lee. We have an attorney and are starting to negotiate. He said he could tell opposing counsel was uncomfortable with the offer - she must realize it is a bad one, and especially egregious given the situation. It’s actually not even really an offer so much as it is about what they want - for him to wrap up some key projects and then sign an agreement that says he won’t reveal the details of the termination. Not much in it for my husband!

In Chicago, there is an ordinance that allows you to sue for triple damages if an employer fires an employee due to Covid. If it went to jury and we won, it could end up being a million dollar plus judgment: BUT we would need to find someone to take us on as contingency and get ready for a long battle that might net us nothing. So hoping we don’t have to pursue that path.
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?

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Fri Aug 28, 2020 7:39 pm

Gina,
How awful all of this is happening for you guys. I've had my hands full so I am late getting to this party and wow what a craptastic time.

My thoughts and prayers are with you and yours!
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm 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.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

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

Re: My CRC with liver mets journey

Postby ginabeewell » Fri Aug 28, 2020 9:06 pm

Mohrfamily wrote:Gina,
How awful all of this is happening for you guys. I've had my hands full so I am late getting to this party and wow what a craptastic time.

My thoughts and prayers are with you and yours!


Thank you! It’s awful but trying to stay focused on the fact that he will eventually be free to find something else that makes use of his amazing talents.

Dr Kemeny said she would take my case to tumor board yesterday but she thought I would need more chemo. I haven’t heard back yet so I assume that means #11 since my recurrence on Monday. Sigh.
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?

AmyG
Posts: 350
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Fri Aug 28, 2020 10:02 pm

Gosh, more bullshit!!!!

I'm really glad your had a good PET though :) That's not bullshit. :lol:
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
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

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

Re: My CRC with liver mets journey

Postby lovelife789 » Fri Aug 28, 2020 10:26 pm

I'm so happy for your good scan!! Been watching your journey and you have been so brave. I remember you absolutely hate your targeted therapy, but you toughed through it with such grace. Good luck to you!

Btw, I was cursing when I saw what happened to your husband. Your husband's ex working partner is totally wrong and disgusting. I wish the whole situation will be resolved soon.
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

Lee
Posts: 6096
Joined: Sun Apr 16, 2006 4:09 pm

Re: My CRC with liver mets journey

Postby Lee » Mon Aug 31, 2020 4:59 pm

ginabeewell wrote:Thanks Lee. We have an attorney and are starting to negotiate. He said he could tell opposing counsel was uncomfortable with the offer - she must realize it is a bad one, and especially egregious given the situation. It’s actually not even really an offer so much as it is about what they want - for him to wrap up some key projects and then sign an agreement that says he won’t reveal the details of the termination. Not much in it for my husband!

In Chicago, there is an ordinance that allows you to sue for triple damages if an employer fires an employee due to Covid. If it went to jury and we won, it could end up being a million dollar plus judgment: BUT we would need to find someone to take us on as contingency and get ready for a long battle that might net us nothing. So hoping we don’t have to pursue that path.


Good luck, Unless there is a very nice severance package, I would not sign any agreement letter. Glad you do have any attorney involved.

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!


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