Possibly still NED...our story to date

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ginabeewell
Posts: 273
Joined: Wed Oct 24, 2018 10:30 am

Re: Possibly still NED...our story to date

Postby ginabeewell » Fri May 10, 2019 4:47 pm

mpbser wrote:Really trying very hard to take things in stride.

My husband's boss is acting up.

Says that he wants my husband to be at work every day he isn't doing chemo. Well, he HAS been! Seriously. WTF?!?! I don't even have the words to describe how much I despise that man.


What line of work is your husband in? That sounds pretty insensitive, especially if your husband HAD been working through it all!!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine 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 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

mpbser
Posts: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Fri May 10, 2019 4:55 pm

He's chief operating officer for a chain of retail stores. It was an extremely insensitive comment, to say the least. I don't think his boss, the owner/CEO of the company, really has a clue. There is a good chance my husband will see him tonight and talk with him. There are basically three options at this point: 1) My husband takes a pay cut and demotion to stick to one (our local) store and one store only (steps down as COO and goes back to being a store manager); or 2) put the one local store on summer hours Friday-Sunday and go to the other locations Wednesday-Thursday with the occasional Tuesday when not doing chemo (Mon-Tue are his chemo "days" on 5-FU); or 3) have his boss terminate his employment (collect unemployment as we sort out next moves).

We shall see what direction this takes.... never a dull moment!

PS They have been friends for nearly 30 years.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

User avatar
ginabeewell
Posts: 273
Joined: Wed Oct 24, 2018 10:30 am

Re: Possibly still NED...our story to date

Postby ginabeewell » Fri May 10, 2019 7:01 pm

Would it be an option to work on his pump days? I typically feel worse AFTER disconnecting so I guess it depends how he feels. (I know he hasn’t wanted to disconnect himself, but it is really easy to learn how to do it safely.)

Personally I wouldn’t want to take a pay cut or lose a position while I’m going through this. I need my insurance and my income!!

His boss is still a jerk BTW.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine 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 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

mpbser
Posts: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Sat May 11, 2019 5:29 am

Yeah, he's a total jerk. I could go on and on about how he is a jerk in so many other ways. He really does not deserve my husband's loyalty for nearly three decades. My worst fear is that loyalty for him is a one way street, but I'm not sure about that (yet).

Thanks for chiming in, gina. I had overlooked the fact that my husband feels worse a couple days after disconnect. Perhaps Wednesdays and Thursdays at the other locations could work out ok. He has been finding the 5-FU pump empty, or just about empty, when he wakes on Wednesday mornings. If he can get in to the local cancer center at 8:30, he can get on the road by 9:00 so long as they are running on time. All of the stores except the local one that he is solely responsible for are located at least an hour away. His boss will want him at the stores by 10:00, but for these disconnect Wednesdays, he is just going to have to be flexible.

Thanks, again!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

mpbser
Posts: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Possibly still NED...our story to date

Postby mpbser » Sun May 12, 2019 8:15 am

I found this post that I had written here in February of last year and found it eerily prophetic as my husband was diagnosed in December 2018 with recurrence:

On another front, I am just about at my wits end with my husband. He just had liver surgery, is supposed to be eating healthy for a speedy recovery and to avoid being diabetic again (as well as to prevent further cancer!), and what is he doing? Returning to his awful diet. Slowly, but surely. Yesterday, it was chocolate chip muffins, ice cream, fried chicken, etc.

I think avoiding further metastasis will take a miracle. I won't be surprised if he has future mets [metastasis]. I don't know if I can bear to stick around for it. I am at my breaking point.


Comparing his lifestyle now to then, he has made huge strides. Thank god!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU


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