Questions and help for newly diagnosed

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TitanGal65
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Joined: Fri Oct 07, 2016 4:05 pm
Facebook Username: Andrea Painter Waters

Questions and help for newly diagnosed

Postby TitanGal65 » Fri Oct 07, 2016 4:59 pm

I am so glad I found this group. We've had so much thrown at us in a short amount of time. I'm hoping we can find a lot of answers or suggestions here.

My fiancé, Tim, was diagnosed August 17, 2016 with colon cancer after a colonoscopy. Had surgery on September 7, 2016. Went back 2 weeks later and was told it was Stage 3 B.
He is 50 years old and has always been healthy. All of this is being done at the V.A. hospital in Tampa. The oncologist we met with yesterday told us about the chemo and the process. We thought it would be an IV infusion every other week. Found out they do chemo on Tuesday. He'll have a port that they will put additional medication into and then have to go back on Thursday to have it removed. This will be done every other week. He told us about the side effects. We knew about the common ones but the hand pain and tingling is scary. The doctor also told him no working for 6 months.

Tim said forget it. He's not doing it. Doctor said 5 year survival rate without chemo is 60-70%. With chemo, 79%. Is it worth it? I would think those numbers are skewed. Don't they use a lot of 70-80 year olds? Is there a study with people just 35-55? His opinion is that since he had an aunt die from brain cancer after doing all the treatments, he wants to enjoy life. I believe after thinking about it overnight, he has changed his mind. I want him with me for a long time.

Can anyone advise on these medications? They are the names the doctor gave us. Adrucil and Eloxatin.

Thank you in advance for all your information. Andrea

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mypinkheaven
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Facebook Username: Sally Cunningham
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Re: Questions and help for newly diagnosed

Postby mypinkheaven » Fri Oct 07, 2016 8:46 pm

So sorry you guys are having to deal with this.

The chemo combination is commonly known as Folfox - 5FU and Oxaliplatin. It's the Oxaliplatin that causes neuropathy. The dosage can always be adjusted if the side effects become too much. The 5FU is less toxic if it is given over a longer period of time - 48 hours rather than a "bolus" in the IV. Other drugs are added to the IV infusion to also reduce side effects.

You can ask the doc about the option of using Xeloda, which is the pill form of 5FU - so no pump, but pills every day plus the once every two weeks IV of Oxaliplatin.

I haven't had IV chemo yet, so I can't go into any more detail, but many other people on this forum can help you out more than I can. I did take Xeloda, and for me, I would rather try the pump. But most people prefer the pills.

As far as statistics, I started out as 2B with no chemo and am now Stage 4.
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

rp1954
Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: Questions and help for newly diagnosed

Postby rp1954 » Fri Oct 07, 2016 10:12 pm

There are choices, side effects, unknowns and there are treatment experiences outside standard. Some of the stage 2's and 3's have been critical about the oxaliplatin side effects.

Oral Xeloda by itself is a possible standard tx choice with different and likely less long terms side effects, with perhaps only slightly more risk (2% OS??)

If I were starting today, I would make sure my blood work included panels like LDH (it can be a liver panel in your chemistry), at least one CA19-9 (this concerns risk of having a metastasic phenotype and cimetidine), and post surgical inflammation levels (hsESR and CRP). If you look at my posts, you'll see we do a lot more testing than this.

Other slightly non-standard choices concern adding cimetidine and/or celecoxib to daily Xeloda, see the archives here. The search function here can be a big help. In a substantial fraction of stage 2 and 3 cases, one might infer the possibility of superior outcomes with some kinds of blood or tissue markers that target cimetidine and perhaps other adjuncts from the literature.

Finally, chemo side effects can often be reduced through supplement programs offered by integrative MDs and NDs. In our case, the particular supplements also appear to increase the activity and success of the milder oral chemo we buy.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: Questions and help for newly diagnosed

Postby NZJay » Sun Oct 09, 2016 11:15 am

I was 31 at dx and told 5 year survival rates for stage 3 without chemo is only 50%.
Unacceptable.
Chemo is a MUST do for stage 3.
Side effects vary dramatically from person to person. I took xeloda but managed only 1 round of oxi. Still here today it seems.

Best wishes.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

justin case
Posts: 4266
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Questions and help for newly diagnosed

Postby justin case » Sun Oct 09, 2016 1:55 pm

It's hard to answer this question, as everyone experiences different side effects. I went through the pump, folfox, radiation, and 2 surgery's and worked throughout the process. I did take a 9 week leave during the 2 surgery's. The chemo is needed in my opinion, as now it has been almost 5 years, I have survived that endeavor.
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Questions and help for newly diagnosed

Postby HopeForJesse » Sun Oct 09, 2016 2:57 pm

Sorry you had to find us, but welcome. Ultimately it is your fiancé s decision. While the chemo is undoubtedly no walk in the park, I would encourage him to consider it. My DH was originally against it but is doing well today, as are many others here, because of it. Keep us posted and hang in there.
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Questions and help for newly diagnosed

Postby BeansMama » Mon Oct 10, 2016 8:26 am

Sorry you have had to find us, but glad you did.

Definitely give the best fighting chance you can, which means to me, throwing everything we can at this disease. I have done 14 rounds of Folfox (5-fu and Oxaliplatin) and am going on my 4th round of Folfiri (5-fu and irinotecan)

Yes there are side effects, and some stink but it is worth it to me to have a chance. Granted I am stage IV, so I look at it as a matter of survival.

Ultimately the choice is up to your fiance, but personally I would definitely go with a heavier treatment.

I will add you both to my prayer list.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Questions and help for newly diagnosed

Postby Maggie Nell » Mon Oct 10, 2016 11:53 am

TitanGal65 wrote:
My fiancé, Tim, was diagnosed August 17, 2016 with colon cancer after a colonoscopy. Had surgery on September 7, 2016. Went back 2 weeks later and was told it was Stage 3 B.

He is 50 years old and has always been healthy. All of this is being done at the V.A. hospital in Tampa. The oncologist we met with yesterday told us about the chemo and the process. We thought it would be an IV infusion every other week. Found out they do chemo on Tuesday. He'll have a port that they will put additional medication into and then have to go back on Thursday to have it removed. This will be done every other week. He told us about the side effects. We knew about the common ones but the hand pain and tingling is scary. The doctor also told him no working for 6 months.

Tim said forget it. He's not doing it. Doctor said 5 year survival rate without chemo is 60-70%. With chemo, 79%. Is it worth it? I would think those numbers are skewed. Don't they use a lot of 70-80 year olds? Is there a study with people just 35-55? His opinion is that since he had an aunt die from brain cancer after doing all the treatments, he wants to enjoy life. I believe after thinking about it overnight, he has changed his mind. I want him with me for a long time.

Can anyone advise on these medications? They are the names the doctor gave us. Adrucil and Eloxatin.

Thank you in advance for all your information. Andrea



There are a few invisible issues that are in the works for both of you. You and Tim are not married and while you want him with you for a long time,
and he has always been a robust bloke, he could be concerned about you becoming his caregiver, not his wife. He could be concerned that the
effects of chemo may alter (irrevocably) the way in which he can be a man to you, and be your man.

A very good friend of mine, had a husband who received a diagnosis of colon cancer and it deeply impacted on his sense of masculinity and
how he saw himself as a man, husband, lover and felt about the mutilations to his body. An issue which most people think is mostly
a woman's concern.

The aunt who died from brain cancer (which are usually incurable) bargained for more time. And had her tumour perhaps been a metastasis
from a breast cancer.......the odds were against the aunt. They are more favourable - heaps more favourable - for your Tim.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

rootsafrica
Posts: 2
Joined: Fri Dec 25, 2015 5:00 am

Re: Questions and help for newly diagnosed

Postby rootsafrica » Mon Oct 10, 2016 2:57 pm

Folfox is super rough. I finished a full course a couple of months ago. But when you have finished you forget. Do the chemo for an extra 10% chance of a cure. Then you won't regret it. Do everything you can, many people survive.

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Questions and help for newly diagnosed

Postby NateA » Mon Oct 10, 2016 3:07 pm

Do the chemo..my personal opinion.
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

HoneyJack
Posts: 45
Joined: Thu Nov 13, 2014 11:32 pm

Re: Questions and help for newly diagnosed

Postby HoneyJack » Mon Oct 10, 2016 3:17 pm

50 years old..be aggressive, do the chemo.
Wife & mom
Right colectomy 4/2014 @41yrs old
Tubulovillous T2-N0-M0 0/30 nodes (located in Cecum)
Stage 1 colon well-mod differentiated
Lynch negative
NED

5/2014 Chest CT showed enlarged lymph nodes/biopsied Sarcoidosis! (Not symptomatic)
3 incisional hernias fixed 3/2016

Nik Colon

Re: Questions and help for newly diagnosed

Postby Nik Colon » Mon Oct 10, 2016 9:33 pm

Chemo is a scary thing, mostly not knowing how the side effects will affect you, but, I would say to at least try it and see first.

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horizon
Posts: 1539
Joined: Tue Apr 12, 2011 10:10 pm

Re: Questions and help for newly diagnosed

Postby horizon » Tue Oct 11, 2016 9:26 am

I was scared of chemo too. My thinking was if I did NOT do it and the monster ended up coming back could I live with the regret of not doing everything I could to prevent it? Chemo is not a guarantee but I wanted to maximize my chances of success. 50 is not old and he could have a lot of life ahead of him. I did Xeloda and Oxi and I was able to keep working during it (took days off for infusions and worked from home two days after). I did that five years ago and have no regrets.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

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kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Questions and help for newly diagnosed

Postby kellywin » Tue Oct 11, 2016 11:24 am

First, any doctor that says "absolutely not work" should not be practicing, that's ludicrous. There are many people that work through chemo. It's no cakewalk, but side effects differ greatly between people and you never know how it's going to effect you. Also, it's frustrating that doctors continue to not mention Xeloda (pill) in place of the 5-FU (pump) - either option goes with the Oxi (which is the shitty part). But one option might be better for him. Personally, the idea of the pills worked better for me as did the 3 week schedule of infusions. It allowed me to work mostly full time (taking a few days off here and there after infusion days). He needs to have an Oncologist that provides options, not flat statements.

As far as stats, don't bother. They just take a bunch of people and track them, some get full treatment, some get partial, some have many other ailments. I personally wanted to do everything I could, and that means chemo.

It's a hard time and I think you're in a difficult spot - you have no idea what he's going through all you can do is be supportive, that may mean cry with him, be angry with him, do whatever you need. Don't hide your feelings. Don't be the "rock", be yourself. And personally, if someone ever referred to themselves as my caregiver, they'd be in a pine box. I can care for myself. I drove to and from every chemo infusion myself.

Hope that all didn't sound harsh. I am thinking positive thoughts for you & your fiance.

--Kelly
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: Questions and help for newly diagnosed

Postby mike218 » Tue Oct 11, 2016 1:02 pm

the 1st couple of rounds were rough-then seemed to develop a tolerance . I did chemo Thursday so no work -some days I could work Friday , some not,
Ask them if they can teach you the disconnect procedure, its not really complicated just a little creepy (I am RN as is wife) but it saved us a trip back to the hospital -we just brought the used chemo ball back with us for the next infusion--Ask them-its one less place to run around to
mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor


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