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KristynKay
Posts: 3
Joined: Tue Aug 08, 2017 8:51 pm

New member.

Postby KristynKay » Tue Aug 08, 2017 9:23 pm

:D I am new to posting , but I have been reading forums for months. So glad to have people who know what you are going thru to talk with.
I have read some very inspiring stories and some very sad stories. I would love to make some friends here. I have an amazing supportive husband, butt I don't like to always complain to him about how miserable I am.
Of course, I don't want to come here and complain all the time either.
I have fought this battle hard. I worked thru all the the first round of chemo and half way thru this round. I am an RN and just can't do it anymore.
Chemo brain is the worst for me. I can't stay focused. And missing work does not make employers happy.
As a matter of fact I was just recent let go from my job as a clinical Manager for a home care agency. In all my 28 years as a nurse. I have never been in trouble norbhavenI been fired.
Butt I think it is time to slow down and take care of me for awhile.
52 year old female, Married
Stage III Colon Cancer DX: 4/16
Right Hemicolectomy 4/16
Removal 16 lymph nodes. 1 positive
6/17: Port Placement
12 Rounds Folfox. 6/16-11/16
MRI 12/16. NED
12/16: Port removal
3/17: ER with severe Abd pain
DX: Mets to Ovaries. Now Stage IV
4/17: Total Hysterectomy with removal of tubes and ovaries
5/17: Reinserted Port
6/17: Started Folfiri with Avastin
Next PET scan 8/16/17
Last CEA 4.4

DebZ
Posts: 73
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: New member.

Postby DebZ » Tue Aug 08, 2017 10:18 pm

Wow. Look at my signature ... our journey so far very similar. I'm sorry you're going through an emotional tough patch right now. I don't work so don't need to manage that part. I'm a little unusual (weird?) in that I've really rolled with the punches through the last three years. I'm a chemo-for-lifer right now, so treat it like a chronic condition and focus on my family. We've laughed and lived more in last three years than we would have done without my diagnosis. Hopefully focusing on yourself now without a job will make things easier.
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014: Folfox 12 treatments (lots of reductions in oxaliplatin and ceased before end)
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and complete hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switching to Folfox+Avastin

Lee
Posts: 5287
Joined: Sun Apr 16, 2006 4:09 pm

Re: New member.

Postby Lee » Tue Aug 08, 2017 10:22 pm

KristynKay wrote::D . . . I have an amazing supportive husband, butt I don't like to always complain to him about how miserable I am.
Of course, I don't want to come here and complain all the time either.
I have fought this battle hard. I
.


Welcome, sorry for the reason you had to join.. Please feel free to vent away anytime, we REALLY do get it here. Know that you are not alone here.

Again welcome,

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 - 10 years and counting!

KristynKay
Posts: 3
Joined: Tue Aug 08, 2017 8:51 pm

Re: New member.

Postby KristynKay » Wed Aug 09, 2017 7:07 am

Wow Deb we kind of are on the same journey and thank you Lee for the welcome.
I too believe I will be a chemo for lifer. At least that was the last response from Dr. He wants to continue me on Avastin and possibly 5FU. I hope not. I hate this freaking pump. I am going to beg for oral meds.
I love my Dr. butt I feel as if because I am a nurse he thinks I know more then I do. Not an oncology nurse so I don't have a lot of knowledge. All of my MRIs have showed spots on the liver butt yet the come out as cysts. But why do I keep getting more? Very small but present. I am scared they will turn out to be cancerous at some point. I have another PET on the 16 th of this month so I am a little anxious.
Another reason I decided to join was maybe I can be a support for other people.
When I was on Folfox I was given emend and zofran for nausea and it did not touch me. I was nauseated for basically 180 days.
On Folfiri I am getting an injection of sustol and taking varubi orally. They are helping so much. I do have nausea on the chemo day and the day after but get better by disconnect day. So a great improvement.
52 year old female, Married
Stage III Colon Cancer DX: 4/16
Right Hemicolectomy 4/16
Removal 16 lymph nodes. 1 positive
6/17: Port Placement
12 Rounds Folfox. 6/16-11/16
MRI 12/16. NED
12/16: Port removal
3/17: ER with severe Abd pain
DX: Mets to Ovaries. Now Stage IV
4/17: Total Hysterectomy with removal of tubes and ovaries
5/17: Reinserted Port
6/17: Started Folfiri with Avastin
Next PET scan 8/16/17
Last CEA 4.4

User avatar
juliej
Posts: 2748
Joined: Thu Aug 05, 2010 12:59 pm

Re: New member.

Postby juliej » Wed Aug 09, 2017 6:20 pm

Welcome, KristynKay! :D

I agree with you that it's time to take care of yourself for awhile. Cancer treatment is rough, not just physically but mentally too. Be patient with yourself about the chemo brain issue. My theory is that it's caused partly by the toxic drugs and partly by the trauma (PTSD) of receiving a cancer diagnosis. Hearing "you have cancer" upends your life and throws all your plans out the window. Your brain can't quite deal with it all.

About your liver cysts -- some people just seem to make more cysts than others for unknown reasons. Simple cysts of the liver contain fluid so an MRI or CT scan can usually tell the difference between them and a cancerous tumor. Sometimes scans also show a hemangioma, which is a benign collection of blood vessels, which can look like cancer but is benign. The problem with scans is they show things that were there all along and could be simple benign issues. But since we're cancer patients, it's all examined in scary detail. :shock:

I took Xeloda instead of the pump. I much preferred taking oral meds to the hassle of carrying the pump, sleeping with it, getting it disconnected, etc. Talk to your onc. There are several studies showing Xeloda's efficacy is the same or better than standard 5FU.

Sending good thoughts for your PET on August 16th!

(((Hugs to you)))
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 10/2/2017, CEA<1

User avatar
CRguy
Posts: 9317
Joined: Sun Feb 10, 2008 6:00 pm

Re: New member.

Postby CRguy » Wed Aug 09, 2017 10:15 pm

KristynKay wrote: I would love to make some friends here.

I'm in.... BUTT you need to understand my sense of ..."humor" :shock: :mrgreen:

Seriously I hear you on a lotta levels :
Stage III to IV
medical training
paying it forward, however we can
being "expected" to do / know more :twisted:
feeling down ... about letting others down
realizing if YOU don't know to take care of YOU ... you are no good to anyone else

ESPECIALLY AS A NURSE ... I LOVE ALL THE NURSES WHO HAVE TOUCHED MY LIFE
and my father's (RIP) .... and my mother's ... currently doing well
Butt I think it is time to slow down and take care of me for awhile.

I love that you picked up on the BUTT thing ... :oops:
I believe I want a patent on that !!!!!!
except ANY CTalker can use it EVERYWHERE anytime !!!!

Your life as a CARE provider for others let's you know what is possible and what can be done
It IS a tough shift to move from CARE provider to caregiver
especially when you need to be the caregiver FOR yourself .....
As a vet of many years I am a care Provider
BUTT with my own life I have now also been a caregiver to aging parents ... and I finally realized, to myself
I need to take care of ME

Nurses, I believe, already have that figured out ... IMO

Did I tell you already I LOVE ALL THE NURSES IN MY LIFE ????
Oh I did ... OK :mrgreen:

THIS is the greatest forum for CRC patients, survivors, caregivers, care providers and activists !
=> WORD !

Where I have learned to come from tho', IS :
... it is not always about the disease inside the person

it is ALWAYS ... about the PERSON inside the disease

and that my new friend is WORD !

Mega Cheers and Harmony coming your way
call on me anytime
" you've got a friend " - respectfully to Carole King !

CRguy on the Journey
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

LanMan65202
Posts: 1
Joined: Sun Aug 13, 2017 1:19 am

Re: New member.

Postby LanMan65202 » Sun Aug 13, 2017 1:55 am

Male age 57
Colon Cancer Reading 1.92
Hemicolectomy June 2016
13 inches of colon removed
No Bag, no radiation or chemotherapy

Went to see doctors over urinary concerns and doctor said I think you'd better have your colon checked. Had blood in stools and was tired, but did not relate these symptoms to something I would have needed to see a doctor about. I really didn't want to go have the tests, but thankfully my wife insisted that I GO!!! and I did. Eventually from the time it was discovered in April to the time that I had surgery I wound up losing about 50 pounds. I've gained most of the weight back, so I'm back to my healthy weight for my height.

My biggest issues seem to be recurrent diarrhea (1 - 2 days per week) and frequent weakness. I work 2 jobs. I walk about 15 to 20 miles per work shift which my doctors love, lol. I manage to get a reasonable amount of sleep, but I just haven't been able to get my strength back. All follow-up tests to this point have been negative. PTL! I've asked my doctors about what to eat, and how to build my strength back, but they really haven't given me any ideas - ie, they say, eat whatever you want to eat. I had hoped my strength would come back with weight gain, but it hasn't.

If I had it do over, perhaps I would have just had the colonoscopy where they cut out the cancerous polyps and skipped the hemi-colectomy part and then take my chances on whether any grew back in that section, but I don't get to have a do over, and I don't regret having had the surgery. Everything went well. I'm thankful that I didn't have to wear a bag and then have another surgery to reconnect things.

I wonder if anyone might have some ideas regarding what I can do to build my strength back and what I should eat to help with that and also lessen the diarrhea part?

Thanks for having this forum. I look forward to hearing your experiences and learning as we walk the walk together.

Joannerogers
Posts: 250
Joined: Tue Jun 16, 2015 4:50 pm

Re: New member.

Postby Joannerogers » Sun Aug 13, 2017 11:52 am

I'll be your friend! Good luck on your journey! I'm in the medical field also so I know what you mean about everyone thinks you know a lot more than a non medical person. I just flat admit to them I don't know when I don't know. I've learned a lot in my 2 years!
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

KristynKay
Posts: 3
Joined: Tue Aug 08, 2017 8:51 pm

Re: New member.

Postby KristynKay » Tue Aug 22, 2017 8:52 pm

Well I got the great news following my PET Scan.

NED BABY!!!!

That being said I am still going to complete the 12 rounds of chemo and then continue whatever the Dr suggests. I will most likely be a chemo for lifer..

The other great part is that all the small spots on my liver are GONE! Dr giving all credit going to the Avastin.
Dr says we will never know if the tumors/cysts on liver were cancerous...Butt that does not matter anymore.

Thanks for all the support..I love this forum.
52 year old female, Married
Stage III Colon Cancer DX: 4/16
Right Hemicolectomy 4/16
Removal 16 lymph nodes. 1 positive
6/17: Port Placement
12 Rounds Folfox. 6/16-11/16
MRI 12/16. NED
12/16: Port removal
3/17: ER with severe Abd pain
DX: Mets to Ovaries. Now Stage IV
4/17: Total Hysterectomy with removal of tubes and ovaries
5/17: Reinserted Port
6/17: Started Folfiri with Avastin
Next PET scan 8/16/17
Last CEA 4.4

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

Re: New member.

Postby DarknessEmbraced » Wed Aug 23, 2017 8:05 am

Congratulations! That's wonderful! :D I hope your chemo goes well!
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

TXLiz
Posts: 228
Joined: Thu Sep 22, 2016 3:31 pm

Re: New member.

Postby TXLiz » Wed Aug 23, 2017 8:47 am

KristynKay wrote:Well I got the great news following my PET Scan.

NED BABY!!!!

That being said I am still going to complete the 12 rounds of chemo and then continue whatever the Dr suggests. I will most likely be a chemo for lifer..

The other great part is that all the small spots on my liver are GONE! Dr giving all credit going to the Avastin.
Dr says we will never know if the tumors/cysts on liver were cancerous...Butt that does not matter anymore.

Thanks for all the support..I love this forum.


CONGRATS on NED. And good riddance to the liver spots.

You most definitely should take care of yourself! I am in awe that you worked as an RN during chemo! Holy cats! You must be super woman...not kidding at all. Amazing.

Good luck going forward with your next 12 rounds. You can do that standing on your head after all you have already gone through.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

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

Re: New member.

Postby DarknessEmbraced » Wed Aug 23, 2017 9:00 am

Welcome and sorry for your diagnosis!*hugs* I hope your chemo goes well!
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


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