Is this really happening?

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

Re: Is this really happening?

Postby kellywin » Wed Aug 12, 2015 12:21 pm

AngiLou - so glad that they are sending you to California, hopefully San Diego is close enough to where your family is. I completely understand the state of shock you are in, but I can't imagine the added stress of living oversees and trying to pack up my life there, without my husband.

I had rectal cancer as well (diagnosed @ 40). One thing about rectal cancer is that the treatment plan is might be longer than someone with colon cancer because we lucky peeps get to have radiation with chemo first (consider getting the pills - Xeloda over the pump). One thing to keep in mind is that it's a long road, MRIs (typically no prep involved), maybe chest & abdomen CT (usually contrast drink involved), then probably chemo/radiation, then rest, surgery, rest then depending on stage chemo again.

There's lots more I could share right now, but I know you are overwhelmed. Just know that we're here for you. Once you have a few posts, you can PM (private message) some folks if someone posts something that really speaks to you, and you can ask specific questions to that person. But in general, feel free to post any questions, thoughts or just to blow of steam.

Good luck with your upcoming trip and getting situated in San Diego.

Take care,

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

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Is this really happening?

Postby PainInTheAss » Wed Aug 12, 2015 1:48 pm

That's good you get to go to San Diego. It's all very overwhelming without having to pack and move already.

I got progressively bad news in the beginning. It seemed like each appointment my staging was worse. One thing I learned that has made a huge difference is that you can choose to believe you will be cured no matter how tests and scans might make you worry. Fearing you will die can make you depressed and very unhappy. I realized that I'd rather be wrong than miserable. It is liberating to live each day free from that worry. Oh yeah, it swirls around in the back of my mind but it doesn't dominate my thoughts and I'm able to enjoy each day and whatever time I have left be it 2 years or 40.

I met a guy who had Mersa and a 1% chance to live and he made it. My chances are better than that.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Vol
Posts: 26
Joined: Thu Jul 23, 2015 3:57 am

Re: Is this really happening?

Postby Vol » Thu Aug 13, 2015 9:06 am

Just want to say "Sorry you are here" and "Welcome". This all started for me a month ago, in the same whirlwind fashion. The advice I've gotten here has been the best of I've gotten from anywhere.

It sounds like polite talk and "the usual" but the best advice is "Calm down and try to relax". No amount of panic, focus or freaking out will make this go any faster. It has it's own pace. I found that I had times I needed to research and ask questions, and I did, but I also realized it could leave me feeling overwhelmed. I studied nuclear engineering and computer science, which means I'm not dumb, but this is all different stuff. It takes a while to get a context for it and to really understand it. I still have a long way to go after hours and hours of reading and studying. Look at it for a while, when you feel overwhelmed or emotional, put it down and tell yourself the truth "Everybody's journey is different". I regularly visualize the appointment when I have the oncologist say "I'm happy to say you're clean and you just need to get checked from time to time". I fantasize about coming here and changing my tag line to say "NED" (No Evidence of Disease).

When the dark gets close, stay away from it awhile until you feel you need to dive into it again. (or this was my experience and what worked for me). Take love and support from any place you can - even a bunch of strange names on a text board. There are great people here - they have helped me so much.

Vol
Dad - 51
Father of 3 girls (27, 26, 20)
08/15 - Resection 08/15
08/15 - Dx - Stage 2A - High Risk (perf colon), 0 of 27 nodes
08/15 - Start - 8 cycles Xeloda, first 4 with Oxaliplatin (done in February)

ALW
Posts: 51
Joined: Tue Aug 11, 2015 9:07 am

Re: Is this really happening?

Postby ALW » Thu Aug 13, 2015 10:35 am

edit
Last edited by ALW on Fri Sep 18, 2015 8:59 am, edited 1 time in total.
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

User avatar
Rob in PA
Posts: 2005
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Is this really happening?

Postby Rob in PA » Thu Aug 13, 2015 11:08 am

Hi Angi, welcome to the club no one wants to be in. I was glad to hear you are going to San Diego. The first few weeks are the absolute most terrible of the journey you are about to begin. I'm not saying it gets easier, but you do learn to smooth out the emotional highs and lows over time (yes, I said "highs" because sometimes you get good/moderately good news only to come crashing down [and the crash is tough]). There are many Colon Club members in Cali that I'm sure will chime in on this post soon. Best of luck to you and keep us posted .

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

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Is this really happening?

Postby Lydia666 » Thu Aug 13, 2015 11:27 am

Hi Angi,
I went thru this 2 months ago and it was the worst time of my life! From diagnosis to treatment, it is brutal but it seems like they are moving fast over there. In Montreal, i waited 2 weeks to have the scans!

While waiting we imagine the worst. I had back pain and thought the cancer was in my bones too. So right now try to not analyse every lump and twitch, it's most likely nothing, it's just our brain torturing us.

Lucky you will be in San Diego. I am happy for you! Keep posting, i'll be here a while.
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.

ALW
Posts: 51
Joined: Tue Aug 11, 2015 9:07 am

Re: Is this really happening?

Postby ALW » Fri Aug 14, 2015 2:16 am

edit
Last edited by ALW on Fri Sep 18, 2015 8:59 am, edited 1 time in total.
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

Nik Colon

Re: Is this really happening?

Postby Nik Colon » Fri Aug 14, 2015 2:26 am

Best wishes

ALW
Posts: 51
Joined: Tue Aug 11, 2015 9:07 am

Re: Is this really happening?

Postby ALW » Fri Aug 14, 2015 2:52 am

Thank you to everyone for your well wishes and supportive messages. I wish you all the best, as well.
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

lhawk0730
Posts: 171
Joined: Mon Oct 27, 2014 10:49 pm

Re: Is this really happening?

Postby lhawk0730 » Fri Aug 14, 2015 11:35 am

Angie, so sorry you're here. But glad you will be in CA with your family. Are they near San Diego? I very much hope so, or that some of them can come down to you while you travel this rocky road. I hope it goes as smoothly as possible, kicks Cancers BUTT and you and your husband can put this all behind you asap. Thank you, thank you, thank you and your husband for your service! My family and I very much appreciate our military and the sacrifices servicemen and their families make.
Daughter to Mom, age 71
Dx 10/14 RC - T3bN1bM0
Chemoradiation til 1/15
Surgery 2/15
Temp ileostomy
Failed Xelox round 4/15
1 round straight Xeloda 5/15 - discontinued
Ileo reversal 5/15
8/15 more Xeloda

Lee
Posts: 6202
Joined: Sun Apr 16, 2006 4:09 pm

Re: Is this really happening?

Postby Lee » Sat Aug 15, 2015 6:25 pm

Hi Angie,

Welcome, sorry for the reason you are here. Thank you for your husband in serving our country. I know this must be very hard on him, especially having to be so far away. Hopefully he will be able to join you soon.

I hope you are on your way back to the states now. You should be getting some straight answers in San Diego. This waiting is the hardest part. You sound like you've got the right fighting spirit to beat this.

Know that you have come to the right place for answers and support.

Keep us posted,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Is this really happening?

Postby Lydia666 » Sat Aug 15, 2015 7:30 pm

AngiLouWho wrote:Thank you to everyone for your well wishes and supportive messages. I wish you all the best, as well.

Hi Angie,
You said your parents and sister had this. I was wondering how they are doing...
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.

ALW
Posts: 51
Joined: Tue Aug 11, 2015 9:07 am

Re: Is this really happening?

Postby ALW » Sun Aug 16, 2015 7:30 am

edit
Last edited by ALW on Fri Sep 18, 2015 9:00 am, edited 1 time in total.
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

ALW
Posts: 51
Joined: Tue Aug 11, 2015 9:07 am

Re: Is this really happening?

Postby ALW » Sun Aug 16, 2015 7:42 am

edit
Last edited by ALW on Fri Sep 18, 2015 9:05 am, edited 1 time in total.
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Is this really happening?

Postby Lydia666 » Sun Aug 16, 2015 8:29 am

Angie, sorry to hear about your mom but happy to hear your dad and sis are well.

I know about the wait- it is brutal!! I had to wait 7.5 weeks to start treatment- that is almost two months!!! I felt like the cancer was getting worse by the day. It is trully horrible. Trust that things are rolling and you will soon be treated. They are very effecient in the states!
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.


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