Update to update

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Update to update

Postby Bev G » Sat Sep 21, 2013 9:51 am

Hi Kids, this is copied from my Facebook because I'm too tired to type it again. Keeping up with you all, and praying a lot. xox to everyone.

So, it's about the end of our trip to Vermont. We found a house in Quechee, Vermont that we are negotiating now. It's very tricky with an unsold house in Pittsburgh, but I've decided not to worry about it since there's nothing I can do about it. The appraisal on the Pittsburgh house came in ridiculously low, but I've decided not to worry about that either. :-) The consultation at Dartmouth was good in that the doc was awesome. Appears he checked any hint of arrogance at the door. He was, however, not terribly optimistic, and suspects Steve's original pathology was done incorrectly, something I have feared for the past year and a half. He may have diffuse large B cell lymphoma but with a T cell component, which is gruesome. The details are way too boring, but the path is going to be re-done at Dartmouth, and if they can't nail it down, the slides will be sent to MD Anderson and Sloan Kettering. Doc at Dartmouth feels this would better explain the aggressiveness of his cancer and why he's never been in complete remission. He has a different, far more aggressive plan for his chemo coming up before the transplant. He is not sure that the transplant will even be possible. If Steve doesn't respond dramatically to the new killer-chemo the transplant may be off the table. Then the cancer would just run its course. Not good at all. All we can do at this point is give it our best shot. So, Steve will have his last 2 weeks of his work life coming up. He will not work again, and that is so sad for him, as it IS the main love of his life. This is a really hard time, that's for sure!


Back to Pittsburgh tomorrow.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

Val*pal
Posts: 860
Joined: Sun Feb 10, 2013 1:24 pm
Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: Update to update

Postby Val*pal » Sat Sep 21, 2013 10:58 am

Thanks for the update, Bev. Good luck on the house situation. Cancer does have a way of putting other life challenges into perspective, doesn't it? Houses/finances can be difficult, but they're not life or death.
So sad to hear the bad news concerning your husband, but knowing what is what sometimes makes things easier to deal with in the long run. I know you'll keep on keeping on.
Val*pal
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

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Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: Update to update

Postby Guinevere » Sat Sep 21, 2013 11:02 am

I sent you a PM on FB, Bev. Man! Doesn't that sound like a cryptic spy message??! :mrgreen: Yeah, I'm on Tramadol and a bit goofy this morning...

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

Re: Update to update

Postby mstults » Sat Sep 21, 2013 10:02 pm

Sounds like some good, bad and unknown things you are dealing with Bev. Even though we have a better idea what to expect as we become more learned about our disease I'm not sure it gets any easier to deal with. It hurts to admit you won't be working any more. Hopefully he gets the transplant. Praying every day.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Update to update

Postby michelle c » Sun Sep 22, 2013 5:53 am

Hi Bev,

Have been thinking of you. Glad to hear that you have probably found a new house. Moving can be stressful and I like that you have decided not to worry about it :D I love your attitude! You have enough to worry about.

Sorry to hear about Steve but it's good that he has a very good onc. He sounds awesome and it sounds like he will do the best for him.

I hope that you don't mind me saying but I truly hope that when Steve finishes work, and is home with you, that he will treat you well and give you the respect, love and kindness that you deserve. It does concern me somewhat that he may not treat you well. Leaving work will be hard on him, I'm sure, especially under the circumstances, but I hope that he doesn't take it out on you and make your life miserable. I know that you haven't kept it a secret that he can be difficult at times.

Thinking of you and sending you much love across the miles.
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

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pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

Re: Update to update

Postby pollo65 » Sun Sep 22, 2013 7:23 am

Bev, if God never gives us more than we can handle he must really think you are a BADASS! Not to be flip, good luck my friend you are also AWESOME!
pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Update to update

Postby skypup » Sun Sep 22, 2013 9:19 am

pollo65 wrote:Bev, if God never gives us more than we can handle he must really think you are a BADASS! Not to be flip, good luck my friend you are also AWESOME!
pollo 65

I couldn't say it any better!!!
Love you!

jscho
Posts: 417
Joined: Sat Apr 18, 2009 10:01 am
Location: Toronto, Canada
Contact:

Re: Update to update

Postby jscho » Sun Sep 22, 2013 9:27 am

Welcome to Vermont Bev! In my unbiased opinion, it is just about the nicest state in the union. I have only passed through Quechee briefly to visit the gorge, but it seems like a lovely place to settle.

I think it is good to get a new perspective on your husband's lymphoma. Hopefully a fresh view will lead to better things. I know you've been through a lot.

Best,
Jeremy
Colon cancer dx Feb. 24, 2009, T3/N2/M0
Right Hemicolectomy Feb. 26, 2009
Stage 3C: 4/19 positive nodes
High grade adenocarcinoma with tumor budding
FOLFOX6 April 15 - Oct. 1, 2009
Elective sub-total colectomy July 3, 2012 due to 2 DALMs
Currently NED

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: Update to update

Postby tammylayne » Sun Sep 22, 2013 3:01 pm

Bev....I am truly hoping that the saying 'when one door closes,,,a window opens" is so true for you and Steve. I hope with all my heart that you are being pulled to Vermont for a reason. A very good reason.

I am glad you are able to deal with selling your home in less then ideal circumstances (price etc...) You truly do know how to pick your battles. I think that is why you are as strong as you are. :wink:

I went to Vermont many years ago, and I do believe it to be one of the prettiest states. Serene, peaceful....all good things to be surrounded by in a time of battle. I hope that despite what you are facing, you are able to embrace the beauty around you....it can only help to give you the strength you will need.

Thinking about you always Bev...and you know....many many gentle hugs....
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Update to update

Postby Rob in PA » Sun Sep 22, 2013 4:15 pm

Good luck with the house buying/selling! It will be sad to lose a fellow western Pa'er...but Vermont is an incredibly beautiful state.

best.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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edinaman
Posts: 1108
Joined: Wed Oct 26, 2005 10:15 pm
Location: Minnesota

Re: Update to update

Postby edinaman » Sun Sep 22, 2013 5:08 pm

Bev, just letting you know I am thinking of you and Steve. Hopefully, having family close to you will make thinks somewhat easier.
Jeff
Went in for surgery for a cyst on my bladder, and they found colon cancer growing on the outside of the colon. Got to have two surgeries at the same time! Stage 3, one node involved.

gep
Posts: 418
Joined: Wed Aug 19, 2009 6:21 pm
Location: Chicago, IL

Re: Update to update

Postby gep » Mon Sep 23, 2013 10:37 pm

Bev,
Thinking of you. How brave to clean out your house now and make a move. I'm impressed. Hope that the new doctor's eyes will help Steve, too.
Gloria
caregiver to Eli
dx 8/07 3B
7/09 - liver & celiac lym node
1/10 Liver Res & Lym nodes out
7/10 Back - Liver & other lym nodes
12/12 hit chemo wall
1/12 Clin Trial - MEK & AKT inhibitors
3/12 Trial failed/ spheres 4/12
7/30/13 Eli died.

Hapa
Posts: 388
Joined: Thu Jan 03, 2013 2:46 pm

Re: Update to update

Postby Hapa » Wed Sep 25, 2013 6:24 pm

I have read some of your post about you DH etc. All I can say is I wish you a lot of strength for the move etc. You have a lot on your plate....

Thinking about you.(((hugs))))
DH Stage 3 RC


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