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BeansMama
Posts: 957
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

New to Board

Postby BeansMama » Thu Jan 28, 2016 2:29 am

Just wanted to say hi and introduce myself.

I started to write out my whole story and realized holy hell it was long, so the cliff notes version it is.

My diagnosis is stage IV Colorectal cancer. I have metastasis to my liver (one large tumor that is actually beginning to grow out of my liver and several spots) and had 4 lymph nodes come up positive.

Napkin ring tumor found in September 2015. Insurance issues forced a wait until November.

1st surgery, sigmoid and a good portion of my rectum removed. Proud owner of a spanking new colostomy. But had the hope it could be reversed. Had issues with a weird discharge, opened incision site (tumor in the sigmoid was too large to remove laproscopically) and placed a wound vac

Home from hospital for 3 days before doing my impression of evil knevil. Felt a pop but it didn't hurt so I kind of blew it off. The next morning everything went to hell. It involved an incision filled with stool and a super fun ambulance ride with my incision only covered with gauze.

2nd admission, 2nd surgery. Lost more colon, colostomy moved and now permanent. I now have the wound vac placed on 2 sites. It was determined the original colostomy was breaking down causing the weird discharge to begin with.

Weeks of healing, vac dressing changes, a rectal abcess and sepsis. I would really prefer to never be admitted to a hospital again.

Finally get to start chemo next week. Can only do Folfox for now because my wounds have not healed fully. The plan is to add Avastin when the wounds are healed fully.

I can honestly say I'm scared. It's hard to hear your oncologist tell you that he can't say you will be cured. I keep thinking I'm not done yet. I have a family that I want more time with. I know the Dr. has to be cautious, and I know I will fight like hell to beat this but it still weighs on my mind. Hence posting this at 1:30 am...

Anyway, that is the long / short version of my story. I look forward to getting to know people on here and sharing support as we all travel this journey.
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

KElizabeth
Posts: 390
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: New to Board

Postby KElizabeth » Thu Jan 28, 2016 7:12 am

I'm so sorry you are going through this terrible disease. I sincerely hope the worst of your ordeal is behind you.
I'll keep you in my thoughts as you go on to the next phase. Chemo is never fun, but it sure sounds easier than what you've already been through. You really should like you are a strong person (are uou tired of hearing this yet?). Do your best to keep your spirits up over the next few weeks and keep us posted as you progress.
HUGS,
Elizabeth
Female age 38- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 -current
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA: 16.4 March 2017
CEA: 90.1 October 2017

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

Re: New to Board

Postby elise » Thu Jan 28, 2016 7:37 am

Chin up BeansMama (BM) .... is it too early to make a joke about the short form of your user name?? :shock:

Sending love from another mCRCer :)

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

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

Re: New to Board

Postby midlifemom » Thu Jan 28, 2016 8:07 am

Welcome BeansMama
Sounds like you had a very rough start, hopefully things will smooth out.
Remember to talk to your onc about all your side effects. Don't take something for granted such as chemo will make me nauseous. If you're nauseous, tell them, let them help you. Best of luck.
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?

Andrea1976
Posts: 380
Joined: Sun Jan 03, 2016 10:32 am

Re: New to Board

Postby Andrea1976 » Thu Jan 28, 2016 9:03 am

So sorry to hear. This just sucks!!!:-( it seems that the worst age where people got diagnosed stage 4 from the start is around 40. Has anybody noticed that? I wonder if there is a pattern.

Please fight and don't give up!!! How do you manage your sleeping? Are you taking anything? I am still getting diagnosed and staged and have hard time with sleeping.
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery
CEA after polyp removal 0.3
Genetic testing negative for colon and breast cancer
39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!

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Bev G
Posts: 5847
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: New to Board

Postby Bev G » Thu Jan 28, 2016 11:10 am

Hello and welcome to the Board. Well, you've already been through hell and you're still walking. That is NO small victory! When I went through my complete wound healing failure after my liver resection in 2010 (7 months to heal) it was my worst nightmare, I think. I had a wound vac for awhile that wound up having been a bad idea and the pain was nearly unbearable. I hope you have a home nurse who completely knows what he/she is doing with the vac. Mine didn't, and it cost me a second surgery. At a minimum, I hope they are turning the vac off an hour or so before the sponge changing so it's not so rough coming out.

I think and hope you will get a lot of support and encouragement from the Board.

I'm sending you warm best wishes for your recovery. Chemo will likely be nothing compared to what you are going through right now

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

DarknessEmbraced
Posts: 2849
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New to Board

Postby DarknessEmbraced » Thu Jan 28, 2016 11:19 am

Welcome to the board but sorry for the reason you're here.*hugs* Sorry you've been through such a rough time.*hugs* I hope things get better for you!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

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

Re: New to Board

Postby midlifemom » Thu Jan 28, 2016 12:13 pm

Andrea1976 wrote:So sorry to hear. This just sucks!!!:-( it seems that the worst age where people got diagnosed stage 4 from the start is around 40. Has anybody noticed that? I wonder if there is a pattern.

Please fight and don't give up!!! How do you manage your sleeping? Are you taking anything? I am still getting diagnosed and staged and have hard time with sleeping.


Andrea,
If you are having a hard time sleeping, please talk to your doc - either the onc or primary care. Sleep is essential. I had trouble sleeping, still do sometimes. I tried 2 different sleeping meds but found that Ativan (anti-anxiety) worked best for me.
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?

Andrea1976
Posts: 380
Joined: Sun Jan 03, 2016 10:32 am

Re: New to Board

Postby Andrea1976 » Thu Jan 28, 2016 12:50 pm

Thank you!!! I will. I have never taken any pills so just learning to navigate. But I NEED sleep. I have to figure this out ASAP.
Stage I
pedunculate polyp in descending colon
moderately diff adenocarcinoma 0.6 cm
Tumor confined to the head of the polyp
Stalk margin 2 cm negative for dysplasia and malignancy
Polyp removed during colonoscopy 1/15/16
No lymphovascular involved
No surgery
CEA after polyp removal 0.3
Genetic testing negative for colon and breast cancer
39 year old female. I am not celebrating my 40th but waiting for my big 50 birthday party!!!

Sally
Posts: 1
Joined: Thu Jan 28, 2016 12:41 pm
Facebook Username: Sally kimmis

Re: New to Board

Postby Sally » Thu Jan 28, 2016 1:09 pm

Hi I'm a complete newbie in search of advice please....I've been really poorly since cauda equina syndrome in 2007. I've got loads of small gallstones and mri showed entire colon enhanced with contrast & thickened. I've been having tummy troubles for over a year with upper right and across top of tummy constant bloating cramping and pain in left hand side with swollen area. Stools hv bn really regular every morning but followed by lots of mucous..good for me as I take a lot of medications including opiates which tend to lead to constipation. Until 2 weeks ago this was the case although I've only really been able to eat very small portions and cereal with yoghurt and fruit for last year no appetite and fear of eating cos of pain. For last 2 weeks stools are now either pencil thin or diarrhoea pain is much worse. Had colonscopy about 6 months ago told all good but they cud only go up in line with belly button as blocked with stool I did have enema prior to procedure. I'm worried I may hv something serious as I feel so awful I'm constantly sleeping and in constant pain from back and legs. It's difficult to know what's causing pain but left sided pain has been there since tummy probs began. Any advice would be greatly appreciated. Ps FCP level is raised approx. 160. Thanks Sally x

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BeansMama
Posts: 957
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: New to Board

Postby BeansMama » Thu Jan 28, 2016 1:41 pm

elise wrote:Chin up BeansMama (BM) .... is it too early to make a joke about the short form of your user name?? :shock:

Sending love from another mCRCer :)

Elise

It is never too early for jokes!! I don't want to know what state I would be in if I couldn't laugh about some of it.
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

User avatar
BeansMama
Posts: 957
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: New to Board

Postby BeansMama » Thu Jan 28, 2016 1:45 pm

Andrea1976 wrote:So sorry to hear. This just sucks!!!:-( it seems that the worst age where people got diagnosed stage 4 from the start is around 40. Has anybody noticed that? I wonder if there is a pattern.

Please fight and don't give up!!! How do you manage your sleeping? Are you taking anything? I am still getting diagnosed and staged and have hard time with sleeping.

Sleep is hit or miss. Sometimes I can't sleep at night so I end up napping during the day. It seems like I do that for a while then it catches up with me and I sleep all night and don't want to get out of bed in the morning. That usually happens when I have a deadline for work I have to meet or if I have a doctor's appointment that morning.

I don't plan on giving up. I'm hoping down the road I will hear cure from my onc. Keeping everything crossed that I can!!
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

User avatar
BeansMama
Posts: 957
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: New to Board

Postby BeansMama » Thu Jan 28, 2016 1:49 pm

KElizabeth wrote:I'm so sorry you are going through this terrible disease. I sincerely hope the worst of your ordeal is behind you.
I'll keep you in my thoughts as you go on to the next phase. Chemo is never fun, but it sure sounds easier than what you've already been through. You really should like you are a strong person (are uou tired of hearing this yet?). Do your best to keep your spirits up over the next few weeks and keep us posted as you progress.
HUGS,
Elizabeth

Hearing I'm strong helps me stay strong if that makes any sense. I'm actually looking forward to chemo - I know that's weird!!! But it is progress after weeks of waiting and healing while the cancer was just hanging out doing its thing totally unchecked.
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

User avatar
BeansMama
Posts: 957
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: New to Board

Postby BeansMama » Thu Jan 28, 2016 1:52 pm

midlifemom wrote:Welcome BeansMama
Sounds like you had a very rough start, hopefully things will smooth out.
Remember to talk to your onc about all your side effects. Don't take something for granted such as chemo will make me nauseous. If you're nauseous, tell them, let them help you. Best of luck.

Thankfully my onc makes all of his patients go to "chemo class" with his NP. She covered all of the possible side effects, what to do, what may help, when to call the office etc. I also already have my nausea meds to use at home in case I need them after my first infusion.

I'm hoping things get easier. I'm finally getting my strength back after everything that has happened. My goal is no more walker in 2 weeks!
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

User avatar
BeansMama
Posts: 957
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: New to Board

Postby BeansMama » Thu Jan 28, 2016 2:04 pm

Bev G wrote:Hello and welcome to the Board. Well, you've already been through hell and you're still walking. That is NO small victory! When I went through my complete wound healing failure after my liver resection in 2010 (7 months to heal) it was my worst nightmare, I think. I had a wound vac for awhile that wound up having been a bad idea and the pain was nearly unbearable. I hope you have a home nurse who completely knows what he/she is doing with the vac. Mine didn't, and it cost me a second surgery. At a minimum, I hope they are turning the vac off an hour or so before the sponge changing so it's not so rough coming out.

I think and hope you will get a lot of support and encouragement from the Board.

I'm sending you warm best wishes for your recovery. Chemo will likely be nothing compared to what you are going through right now

Bev

It is nice to hear from someone who has experienced the hell of a wound vac. It worked well for me but it hurt. I finally got it taken off 3 days ago (hooray!). I would turn it off myself an hour before a change, thankfully the hospital wound care nurse told me to do that before I was discharged. I would also load up on pain meds about 45 minutes before the change. I had changes twice a week. One I had to go to the surgeons office to have done, the other home health did. They were both pretty good about it. They didn't just rip the sponges out. We also used mepitel (spelling?) which eased the sponge sticking a lot.

I'm almost on my third month of the healing journey. I'm getting impatient, I want to be healed already! I can only imagine what you went through. It sounds infinitely worse than what I have dealt with. You are amazingly strong to have come through all of that.
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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