Grade 3 Hand Foot - MSK today

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hart2hart
Posts: 798
Joined: Wed Nov 23, 2011 10:46 pm

Grade 3 Hand Foot - MSK today

Postby hart2hart » Wed Apr 01, 2015 5:35 pm

Hi -

Pete saw Dr. K who reduced his Xeloda from 2150 to 1800 twice a day every other week.
He's half way through treatment - Thank goodness because his Hand/Foot is Severe. Anywho ----
Dr. K said if your next scan is clear (*feb 2015 was clear) no more chemo! Yay!

Not so fast.......I get home from work and check out Pete's labs online......everything OK except cea went up
from 2.4 in January to 7.1 today. YIKES! It's never ever been that high. Can Severe Hand/Foot cause this big jump?
I have a call into MSK----hopefully they will call back when clinic is over today. Ugh, --- Should I ask for a PET?

On a REAL BRIGHT NOTE --- Pete met Maddieloo and hubby!!! He had a wonderful chat with them!
Any thoughts/suggestions from ya'al? Thanks.



Julie and Pete
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2024
Hai Pump/Port Removed - 1/2020

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

Re: Grade 3 Hand Foot - MSK today

Postby juliej » Wed Apr 01, 2015 5:44 pm

That IS a big jump! :shock: I haven't heard of HFS causing that much change, but I don't know for sure. My HFS was awful (lost 4 toenails) but it didn't affect my CEA. I would ask for a second test in case there was some kind of lab error. What was his LDH? In the normal range? Dr. K uses that as an indicator.

Hang in there! I'm crossing my fingers and praying that it's nothing!
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

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

Re: Grade 3 Hand Foot - MSK today

Postby skypup » Wed Apr 01, 2015 5:46 pm

I'm hoping that drop in Xeloda helps the HFS. As to CEA, don't know... the suggestion to redo labs is good, for sure. Hoping for good news!!!

hart2hart
Posts: 798
Joined: Wed Nov 23, 2011 10:46 pm

Re: Grade 3 Hand Foot - MSK today

Postby hart2hart » Wed Apr 01, 2015 5:53 pm

JulieJ -

LDH = NORMAL


I hope they call tonight.........! Double UGH!



Julie H
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2024
Hai Pump/Port Removed - 1/2020

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

Re: Grade 3 Hand Foot - MSK today

Postby juliej » Wed Apr 01, 2015 6:06 pm

hart2hart wrote:JulieJ -

LDH = NORMAL

I hope they call tonight.........! Double UGH!

I hope they do too, but if they don't it's because Dr. K is going to look things over in more depth. She does that kind of stuff on non-clinic days. Sending strength your way!

(((Cyberhugs)))
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

hart2hart
Posts: 798
Joined: Wed Nov 23, 2011 10:46 pm

Re: Grade 3 Hand Foot - MSK today

Postby hart2hart » Wed Apr 01, 2015 6:15 pm

Sandra just called......Not happy that I called.

Dr K is not concerned, scanning in one month. See the problem is Pete would have asked her about the increase but
the CEA comes back after he is on the train home I never call --- this is like the second or third time.

I asked Sandra to ask Dr K if in-fact the CEA could rise that much with his severe toxicity. Sandra asked and
she said, Yup, it could. I guess we have to wait. He sees his local onc next week so at least i can get CEA run there
and compare.......Time for a cocktail or two!!


Julie H
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2024
Hai Pump/Port Removed - 1/2020

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

Re: Grade 3 Hand Foot - MSK today

Postby juliej » Wed Apr 01, 2015 6:33 pm

Yes, let's make that 3 cocktails! :D

If they said it could increase that much with severe toxicity, then (whew!) that's good! Getting it checked at your local onc next week for comparison is a good idea. Now it's time to RELAX! :D
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

eleven11
Posts: 130
Joined: Tue Sep 16, 2014 12:48 pm
Location: Chicago

Re: Grade 3 Hand Foot - MSK today

Postby eleven11 » Wed Apr 01, 2015 6:35 pm

Please keep is posted as my mom has a similar jump.
11/11 Mom dx @ age 50 T3M0N0
2012 12 tx FOLFOX
12/13 2 lung nodules
1/14 VATS wedge
3/14-present 5FU
4/15 Lobectomy RML

Carolinabluetec
Posts: 415
Joined: Wed May 28, 2014 11:52 am
Location: Greenville, SC

Re: Grade 3 Hand Foot - MSK today

Postby Carolinabluetec » Thu Apr 02, 2015 7:44 am

My Oncologist does not test for CEA during many types of chemo. He believes the results can be inaccurate due to the chemo. I was only tested before chemo began and when it was completed.
03/14 DX Adenocarcinoma Sigmoid Polyp
05/14 Da Vinci Sigmoid Colectomy
06/14 T3N0Mx, staged IIa
07/14 Xeloda 3000 mg/day 14 on/7 off 8 rounds
12/14 Finished Chemo
01/15 CT NED :D
07/15 Colonoscopy NED :D
08/15 CT NED :D
03/16 CT NED 8)

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jgall
Posts: 814
Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Re: Grade 3 Hand Foot - MSK today

Postby jgall » Thu Apr 02, 2015 8:00 am

Julie - I hope its nothing and that you can go back to celebrating the clean scan. I did want to say (and you might already know this) but comparing MSK's CEA with another lab could be problematic. These tests can vary by lab. When we were at Mayo Clinic Chris's CEA was running a pretty stable 3-5 range. When we were in the process of transferring out here to MSK he flew out from MN to NY a few days after having the CEA done at Mayo. MSK did full labs, and his CEA came back at 10.7. I was a bit freaked out. However, his CEA stayed in the 10 range out here at MSK for several months. So, I took that to mean what was 5 at Mayo was a 10 at MSK. :)

Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: Grade 3 Hand Foot - MSK today

Postby elise » Thu Apr 02, 2015 8:30 am

Julie, ask for a PET just in case :(

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

hart2hart
Posts: 798
Joined: Wed Nov 23, 2011 10:46 pm

Re: Grade 3 Hand Foot - MSK today

Postby hart2hart » Tue Apr 07, 2015 5:42 am

Results of CEA at local Doc yesterday ----2.2 MSK 7.1, Local 2.2 (6 days between tests)

Anyone else have this large difference (besides Julia's Chris - Thank you Julia)

I guess we have to wait on the scan in one month. i hate waiting!! UGH!

GO UCONN HUSKIES TONIGHT!


Julie and Pete
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2024
Hai Pump/Port Removed - 1/2020

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: Grade 3 Hand Foot - MSK today

Postby Badass » Tue Apr 07, 2015 8:35 am

Wow, Julie, that is very confusing! What does the MSKCC oncology staff say about this? Have you looked at the scale that is used at each place? That can account for differences. Sorry you have this stress!


Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

CM35
Posts: 265
Joined: Tue Dec 03, 2013 1:16 pm

Re: Grade 3 Hand Foot - MSK today

Postby CM35 » Tue Apr 07, 2015 9:23 am

Julie, my CEA at MSK is consistently 3-4 TIMES higher compared to local. I asked both dr k and my local onc what gives. Dr k just said "I'm not worried about your CEA." Local onc mentioned the difference in labs and methods, but admitted in his experience that it usually isn't this big of a discrepancy. Who knows?
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...

ASTEPHENS33
Posts: 353
Joined: Wed Dec 14, 2005 10:04 pm
Location: Seattle, Washington
Contact:

Re: Grade 3 Hand Foot - MSK today

Postby ASTEPHENS33 » Tue Apr 07, 2015 10:06 am

While I was on Xeloda my CEA went up and took almost a year to get to almost zero. Chemo impacts the CEA.


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