New beginning...

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Posts: 116
Joined: Fri Jul 03, 2015 10:34 am
Location: Kings park NY

New beginning...

Postby Tanya » Fri Mar 25, 2016 12:34 am

Who remember my story. I am after surgery already two mont. How I fill ? I am alive and it is good already :D
My surgery was 10 hours, they founded more problem related to my post radiation, my rectum wall , uterus and bladder was fried together, so they separated this organs. I was in the hospital for two weeks and I thing I was lucky, because I stay in intensive care unit all the time. It was not easy with colostomy and BIG cut in the front and in the back. I lost a lot blood during the surgery and I had transfusion, infection and it was no fun....
The was day when I thing I can't and I don't want to live but now I am here., with VAC machine for the month already and it is going better( VAC machine - it is the vacuum pump), they use this machine because after a month they founded fluid stay inside ( infection) , so they did cut 7cm deep and in diameter 2 cm on the back and this Vac works , it is better . Doctor said I need this for 2-3 month. So every two days the nurse came in to my house to change the dressing.
Colostomy it is not so bed , how I thing before surgery, I use to already.
My surgeon,after surgery he said its end of the road, no more radiation and in anal cancer they don't have a chemotherapy after surgery.
Last week I so my oncologist and she told me , the standard protocol not include chemotherapy after surgery because they don't know if it work , they don't do a lot of testing because not a lot people has this type cancer. So, she told me I need (probably) some chemo,my cancer was toooo aggressive ( from December up to my surgery( one month) my new tumor was 4 cm.She said , she want to look for Trial program first but if she don't founded anything, she want to use standard chemo for metastatic cancer what it is really aggressive (4-6 month of chemo).
If chemo help? Nobody knows. It is maybe give me a little bit of better chance to be cancer free. But they give me a good chance now without chemotherapy. So I don't know what to do, chemotherapy - another half a year of hell and nobody guarantee it help to prevent... Or , don't do anything and wait what's next? If cancer come back or not....
I understand nobody can't make this decision for me but you can give me your advices, please.
Thanks to everyone.
Dx-32y.o. Anal cancer-stage 3.
Aug-Sep xeloda & radiation-30
November 12-MRI-bones clear
November 30-NED
Moms of two (3 & 12 y.o.)
Recurrence -01.19.2016
Colostomy and APR surgery - 01.27.2016
Possibly chemo - June

Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: New beginning...

Postby midlifemom » Fri Mar 25, 2016 6:18 am

Sorry, no advice but I'm glad you're currently feeling well.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

Posts: 107
Joined: Tue Mar 17, 2015 5:25 pm

Re: New beginning...

Postby LB10 » Fri Mar 25, 2016 8:38 am

Tanya! I'm so happy you posted and are doing well, though you have certainly been through so much. I'm sorry not to have any good advice for you. If it was me, I think I would maybe get another opinion? If you really trust your oncologist follow their recommendations. It's so hard to know what to do. I'm wishing you all the best for continued healing and good health.

Stage III Rectal cancer
Dx 3/14
4/14-7/14 8 rounds Folfox
8/14-9/14 Radiation/Xeloda
1/15 APR colostomy
46 yo wife & mom

Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: New beginning...

Postby Lydia666 » Fri Mar 25, 2016 12:54 pm

Glad to have your news as i was wondering how it is going. Sounds like you went through a lot with surgery- ouf! I don't know what to say about chemo- i did 4 months of Xeloda, we had to reduce the dosage, take longer breaks, my hands and feet had a hard time- still do, i am finishing today. Only the doc can advise about the benefits vs risks. I would say try and see if it's bearable.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: New beginning...

Postby jhocno197 » Fri Mar 25, 2016 2:37 pm

No advice, but glad to hear from you!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: New beginning...

Postby Nik Colon » Fri Mar 25, 2016 7:34 pm

I would consider at least trying it, but of course, that is up to you. Best wishes
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

Posts: 116
Joined: Fri Jul 03, 2015 10:34 am
Location: Kings park NY

Re: New beginning...

Postby Tanya » Fri Mar 25, 2016 7:47 pm

Thanks to everyone, I thing I will be tried chemo when my surgeon giving his approval, at list I have two more weeks before it's start. I have second opinion appointment on Monday , will see..
Dx-32y.o. Anal cancer-stage 3.
Aug-Sep xeloda & radiation-30
November 12-MRI-bones clear
November 30-NED
Moms of two (3 & 12 y.o.)
Recurrence -01.19.2016
Colostomy and APR surgery - 01.27.2016
Possibly chemo - June

Posts: 1
Joined: Mon Mar 28, 2016 4:56 am
Facebook Username: domonique.wells

Re: New beginning...

Postby domoniquewells » Mon Mar 28, 2016 5:02 am

I am glad that you are feeling well. May god bless You

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