My CRC with liver mets journey

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: My CRC with liver mets journey

Postby juliej » Wed Apr 15, 2020 5:28 pm

ginabeewell wrote:Well, Dr Kemeny had a last minute change of heart and pulled the Vectibix. I wondered aloud to my local oncologist and got the sense that she didn’t know either, her theory on it didn’t make sense (unless it was a change in strategy due to Covid and no longer wanting to pursue super aggressive treatment for smallish lesions?).

At any rate, I found the Vectibix rash BY FAR the worst side effect to date, so that news came as a relief.

I’ve thought a lot about why this recurrence is so emotionally deflating (other than the obvious). When I decided to keep working in the wake of my initial diagnosis, I got the feeling that if I recurred, THAT would be the time to quit because it would be a sign that I wouldn’t make it.

My therapist has warned me a few times of our brain trying to make sense of something so as to regain control. And I think that’s what I kind of tried to do - tell myself I would know what would happen if X happened.

The truth is that nobody knows what will happen. And my dominant emotion in the wake of the news wasn’t dread that this is going to kill me - just lots of sad that I have to get through it.

Yay on pulling the Vectibix! :D :D :D

Most likely her decision was based on how aggressive she thinks the recurrence is PLUS the added risk of Covid. So putting you on just Folfiri is a good sign!

(sigh) The control issue... I've been there. You're right no one knows what will happen. There were times during my treatment that were pretty dark. I'm not sure how I got through them, but part of it was trying not to think too much about what might happen. Occasionally, I pushed Dr K too far and she slapped me down with a "we'll see - just do what I say for now." Just knowing she was never going to give up on me and was willing to fight like hell for me make it easier to turn my worries over to her. A few Ativan before bed helped a lot too! :D

Let me know how it goes with the RSO and Dex combo.

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

kandj
Posts: 299
Joined: Sun Sep 27, 2015 11:29 am

Re: My CRC with liver mets journey

Postby kandj » Sun May 03, 2020 12:48 am

My DH had a lot of the same joint pain after being on chemo a while, Probably about 2 yrs into it. He saw a rheumotologist that works in the same office as his local oncologist and did all the RA testing. Some of it was elevated, and she prescribed some drugs (diclofenac and hydroxychlorquine). Both did help, but in the end the thing that helped the most was being of chemo, and more importantly, the steroids in his pump! he was on this for so long due to elevated liver enzymes, that when he came off it, I think it messed a lot of things up. But several months of being off the deca in the pump and things got better. He is back on xeloda now, but the joint pain hasn't returned (knock on wood!).

I hope you will qualify for surgery to remove the new spots. DH did end up having SBRT on his liver recurrence and that was 2.5 yrs ago. So far, so good. He saw Dr. Rommesser at MSK for that, and he is such a great guy. Younger, funny, and really cares and spends time with you.
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

boxhill
Posts: 589
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Tue May 26, 2020 8:26 am

Hey, Gina, I've been thinking about you and hope that all is well.

And that your family was able to have some semblance of a nice Memorial Day weekend in these weird times! :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
5/18 FOLFOX
7/18 CT NED
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
Suspend treatment

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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 May 26, 2020 10:22 am

Cancer is never a dull moment.

I had a bad night about a week ago. I got sad / mad and sort of lost my shit - not at anyone, just at the cancer itself. This recurrence has really been difficult to process and between it and work stress (20% pay cut anyone?) and Covid, I just hit a wall.

Anyway, my husband’s ex is now not letting the stepkids come back. My 14 year old stepdaughter “doesn’t feel safe” and won’t talk about it with anyone because she “doesn’t feel safe.” And her mom won’t let her back until she does. This is made doubly complicated because apparently she’s been complaining about me being critical and not wanting her to be herself for months. And while I leave room for the possibility she feels that way - she’s 14; irritated at my insistence that she 1) come to dinner, 2) not have her phone at the dinner table and 3) properly socially distance. Most of all, I think my cancer cramps her style and she’s created a reason why she can’t be here.

I’m devastated, as is my husband. He was talking about thinking suicidal thoughts this weekend - and he’s wired to be happy.

I am so angry and I feel betrayed. I kept it together for 18 months with stage 4 cancer, but one night of yelling (I don’t really yell; almost ever) and it’s all over.

By law we get them every other week, but she’s saying if we try to enforce that, she will file an emergency motion. I’ve done enough court to know that rarely goes the way you want it to go.
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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beach sunrise
Posts: 217
Joined: Thu Mar 05, 2020 7:14 pm

Re: My CRC with liver mets journey

Postby beach sunrise » Tue May 26, 2020 2:34 pm

Gina, you have been managing your cancer stress very well to have done it for 18 mths. Its ok to let whatever emotions out for your own well being without apologies. The fact that family is stressed out is a whole other issue. Some selfishly take advantage of a loved ones dx and others have those times of feeling helpless. From all I have read about the domino affect of emotions with cancer and that your family is going through this, counseling might be something to consider especially for you and husband.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
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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ginabeewell
Posts: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Tue May 26, 2020 3:30 pm

beach sunrise wrote:Gina, you have been managing your cancer stress very well to have done it for 18 mths. Its ok to let whatever emotions out for your own well being without apologies. The fact that family is stressed out is a whole other issue. Some selfishly take advantage of a loved ones dx and others have those times of feeling helpless. From all I have read about the domino affect of emotions with cancer and that your family is going through this, counseling might be something to consider especially for you and husband.


Thanks.

I have a therapist I see weekly. As does my stepdaughter.

Unfortunately it does little good if your family members doesn’t choose to share anything with you until they decide they are done living with you. Then it’s too late I guess. My stepdaughter’s mom has been aware of how she’s been feeling, but told us only that something is wrong, and she can’t share something her daughter told her in confidence.

I’m just beyond. I thought you had to be a bad parent to lose a child. Nope nope!

Makes no difference that I’m the one making dinner, making arrangements, finding doctors or anything else that a primary parent might do. Because I’m not a real parent, only a stepparent. So I don’t count.

Curious how many other cancer patients lost their children when they went through treatment.

I’m so sad, and so so angry. It’s not fair.
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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beach sunrise
Posts: 217
Joined: Thu Mar 05, 2020 7:14 pm

Re: My CRC with liver mets journey

Postby beach sunrise » Tue May 26, 2020 4:28 pm

Losing children thru treatment is a good topic discussion!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Claudine
Posts: 399
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My CRC with liver mets journey

Postby Claudine » Tue May 26, 2020 4:48 pm

So sorry you're going through this on top of everything else, Gina... Teenagehood is a difficult period to start with - even without the added struggles of cancer. Your stepdaughter is probably very scared, and because of the situation (mother available as an alternative place to stay), she has the opportunity of going away - by not seeing you, she can block something stressful from her mind, pretend it does not exist.
But of course I'm not a therapist. I'm glad my own children are (mostly) grown now, that they don't live at home (most of the time - we do have our daughter back for the summer) and did not see their father struggle and suffer. His cancer is taboo, at least it does not get discussed in his presence; I act as a buffer, passing on basic information and everybody is happy with this arrangement... For now... There are difficult moments, when like you he "loses it" - and we discussed how that's ok, as long as it's also ok for me to lose it at times, too. Typically we "lose it together" then rally up.
But it's stayed between the two of us, again because the children have not been at home during the most difficult times.
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 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

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

Re: My CRC with liver mets journey

Postby ginabeewell » Tue May 26, 2020 6:09 pm

Claudine wrote:Teenagehood is a difficult period to start with - even without the added struggles of cancer. Your stepdaughter is probably very scared, and because of the situation (mother available as an alternative place to stay), she has the opportunity of going away - by not seeing you, she can block something stressful from her mind, pretend it does not exist.


I think this is very likely what is happening. But nobody is framing it that way. Instead, we have a story about a nasty critical stepmom who lost it one night 18 months after diagnosis. And a situation that does not "feel safe" for the kids.

I wonder if anyone feels safe right now.


I think it is hurting so much because if you asked me what I was proudest of in my life - it wouldn't be my fancy job or salary or the fact that i bring billion dollar accounts into our agency. It would be how proud I am of our blended family, and how much love and awesomeness we have in spite of the crazy with four kids. So i feel like an idiot beyond my sad and mad. i am not a bad mom!! or stepmom!!
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?

stu
Posts: 1376
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Wed May 27, 2020 6:18 pm

Recently a friend took in her grandson when he ran aground with his relationship with his mother . She was trying to get him to work at school . His gran totally accepted he did not wish to so there was no conflict to resolve there and they have had a good year together . However his mother has been in pain emotionally over it as she was not on board with this arrangement . What struck me was they lost the opportunity to try and resolve their issues as he could step away from it without having to face it . Will that be his default setting when life gets tough ! Her mother is onboard with the situation so I don’t see what you can do even although there is an injustice. I felt sympathy for the mother in the above situation as I have laboured the benefits of education too . I thought she was trying to be responsible. He dropped out of school and she had absolutely no real say . Once you give them an opportunity to not work through they can easily walk out .
I really don’t shout either , I actually don’t have a strong voice and it does not sound very effective anyway . I did give it a go when I saw my son’s corona haircut !!! However I have one son despite this who remembers in detail every time I have lost it . I can only think it was because it was a rare event !!
Sure he would be ill prepared for life if he did not have to navigate his mother’s emotions now and again ! You are human and I would try and not absorb all of that at the moment. You can only try and do your best as you have always done .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

missb2020
Posts: 6
Joined: Wed Apr 15, 2020 9:24 am

Re: My CRC with liver mets journey

Postby missb2020 » Thu May 28, 2020 3:13 pm

Hi there I was reading your journey and had a few questions.

My husband was diagnosed in 2016( age 45) with CRC Stage 2B and had surgery and then did Xeloda for 6 months after. All scans and bloodwork have been normal until 1 month ago. On his last scans the noticed a 7cm spot on his Liver but nothing anywhere else. He is already on his 3rd chemo treatment and they are suggesting 1 more and then a Portal Vein Embolization followed by Liver resection ( right side) . We are in GA and no one has ever mentioned anything about a pump. Is that something we need to be asking about or is that not necessary if he is able to have the resection and there are no other METS?

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

Re: My CRC with liver mets journey

Postby ginabeewell » Thu May 28, 2020 6:17 pm

missb2020 wrote:Hi there I was reading your journey and had a few questions.

My husband was diagnosed in 2016( age 45) with CRC Stage 2B and had surgery and then did Xeloda for 6 months after. All scans and bloodwork have been normal until 1 month ago. On his last scans the noticed a 7cm spot on his Liver but nothing anywhere else. He is already on his 3rd chemo treatment and they are suggesting 1 more and then a Portal Vein Embolization followed by Liver resection ( right side) . We are in GA and no one has ever mentioned anything about a pump. Is that something we need to be asking about or is that not necessary if he is able to have the resection and there are no other METS?


The HAI pump is definitely worth investigating for anyone with liver mets, as that is the site most likely for recurrence. But you may not be able to get it done locally - I think MSK in NY and City of Hope in LA are the only places that really push it. A handful of other places do offer it - like Northwestern in Chicago - but in my case my MSK oncologist calls the shots on treatment. And my experience has been that manner centers downplay the effectiveness of the pump, probably because they don’t have the expertise. So don’t be discouraged if you ask and someone in GA tries to dissuade you!
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: 452
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Jun 11, 2020 1:40 pm

Kemeny finally saw my scans and I had my first Telehealth appointment.

One spot was smaller; the other stable.

Between size and position, she says they aren’t operable or an option for ablation. She wants me to add Vectibix back into the mix in the hopes that the more aggressive treatment will help.

I want to cry. I hate Vectibix so, so much. And overall this feels like it’s moving me closer to a “chemo for life”’plan.
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?

boxhill
Posts: 589
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Thu Jun 11, 2020 1:50 pm

Ugh.

But if it keeps you going until the next big breakthrough, and if that breakthrough works for you, it will have been worth it, right? That's basically the long term view the doctor I consulted at D-F suggested. I fully admit that so far I have been lucky that the last big breakthrough worked for me. But if it stops working, there's no chemical alternative. The upside, the downside...I'm pulling for you.

And I hope your family situation is less fraught. That's the last thing you need. Hugs.
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 CT NED
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
Suspend treatment

Claudine
Posts: 399
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My CRC with liver mets journey

Postby Claudine » Thu Jun 11, 2020 2:01 pm

Apologies Gina - I cannot remember if you still have a HAI pump (or ever had one)? Is this how your chemo gets delivered? Again, apologies if I get things confused, but since DH has never had anything wrong with his liver, I'm not on top of things with that regard.

I'm sorry that you have to get Vectibix again - I do remember how much you hated it. Like Boxhill, and many here, the hope is that some type of major breakthrough is around the corner - with CRISPR or other approach - and that people who are currently told that they're on chemo for life will eventually be able to be treated (cured?!?). And you're not there yet. Wishing you strength for the continuation of this journey XXXXX
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 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20


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