Just a lifer whining about being a lifer

Please feel free to read, share your thoughts, your stories and connect with others!
Steph20021
Posts: 422
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Just a lifer whining about being a lifer

Postby Steph20021 » Fri Mar 17, 2017 1:04 am

So I've been back on folfiri with avastin since June, except for a short break due to my pulmonary embolism. I am so,so tired of the chemo. The sickness, the roller coaster ride every two weeks. I've been in treatment more than I haven't in the last three years and if I consider the prospect of going another three years with chemo it near kills me. No pun intended. I try not to look,too far ahead and go day by day but I'm having a pity party for myself. It's such a shitty way to go through life. I'm really hoping with medical advancements I have "time" and life after treatment. This particular cycle was extremely rough for some reason and took me a week to get over. Maybe because I didn't drink enough, or it's because I've added a white blood cell injection this week. I can't believe I have treatment again next week. When it takes a week to get over
U are having chemo all the time. At least this one was unusually bad. Any other lifers feeling tired of it?
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, R ovary removed & temp ileo
3/14-9/14- 12 rds folfox
10/14- rev ileo
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
7/15- flex sig- all clear
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
Current: abdo wall mets and lymph nodes
Feb/17- 1 wk radiation to abdo wall
Currently on folfiri 4 life

cbsmith
Posts: 9
Joined: Sat Nov 28, 2015 11:45 am

Re: Just a lifer whining about being a lifer

Postby cbsmith » Fri Mar 17, 2017 6:56 am

I just finished my 28th round of Folfiri and Avastin this week. I am also on chemo for life. Sometimes it is hard to keep going through the process over and over again. My tumors have not responded to chemo well, the chemo has stopped the growth but I haven't gotten much shrinkage.

Everyone's opinions on this vary but I personally believe that going through chemo every other week for the rest of my life should have some enjoyment during the time as well. I have taken breaks from the chemo at achristmas time, March break when my son is off school, etc. I find it helps me feel better tomget an extra week or two without chemo and gives me something to look forward to. Last summer I skipped threee cycles to enjoy summer with my family. We knew that likely the tumors would grow during this time but since surgery is not an option and they aren't shrinking with Folfiri we decided it was worth it. It turns out that after starting chemo again and 3 treatments everything was back to the same size as before.

Again, not everyone will agree with taking breaks but for me I need them sometimes to give me something to look forward to and keep going. Some people will push through and do absolutely everything it takes to extend their life a little longer while waiting for a better treatment to come along. For me there is a quality vs quantity. I want to spend as long as I can with my family but I don't want to be doing it sick in bed every day either.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

KElizabeth
Posts: 313
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Just a lifer whining about being a lifer

Postby KElizabeth » Fri Mar 17, 2017 8:05 am

18 months in on Folfiri nonstop. I use usually feel great for the two days before treatment and it's hard to go back to it just when I feel better. I would really like a break but I can't ease up on the cancer.
I try to look at each cycle as one step closer to a cure. I can just keep looking at one week at a time and push through. It's pretty predictable every cycle so that helps too.
Female age 37 - two kids, age eleven and fifteen.
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 - MS ?
FOLFURI plus Avastin - Sept, 2015 - current.
Art therapy January 2015 to current. :D
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA recently: 10.2 December, 2016

User avatar
SEWHAPPY
Posts: 83
Joined: Tue Nov 15, 2016 4:25 pm

Re: Just a lifer whining about being a lifer

Postby SEWHAPPY » Fri Mar 17, 2017 4:11 pm

Although I am not a lifer, I feel strongly that everyone here understands those down days. Cancer is shitty and it is normal to feel overwhelmed and sorry for ourselves some times. Go ahead and whine - we understand. If it becomes a regular feeling, the maybe consider anti-depressant support? I could not go through even this initial cycle without them.

Maybe make those best days of the cycle special - like little mini vacations. Plan special foods, things you like to do - pamper yourself. You deserve it! Play tourist in your own town or take a craft class or see a concert or whatever floats your boat. Planning for the good days will give you something to take your mind off things when feeling yucky.

Hugs and prayers for courage! Laurie
Female age 51.
CC diagnosed 10/13/16 at first colonoscopy.
Lap colon resection 11/21/16, removed ovary & fallopian tube.
T4N0M0, stage IIC.
Lynch negative.
Power port installed 12/19/16.
FOLFOX will start 12/28/16.

MDK
Posts: 41
Joined: Sun Nov 29, 2015 1:43 pm

Re: Just a lifer whining about being a lifer

Postby MDK » Fri Mar 17, 2017 4:46 pm

Thank you so much for this post. I, too, am most probably a lifer. I am four days from the end of my treatment and am just now feeling better. Tuesday of next week it starts over again.

It is very hard to explain these feelings to anyone who has never had this vicious disease - how much you want to live, how afraid you are you won't, what to do next and for how long.

For now I press on. I am on Xeloda and Avastin and have had some shrinkage of my liver lesion.

Fight the good fight.

Marianne
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Xeloda 3500 MG on Radiation Days
Completed Chemoradiation 2/17/16
24 of 25 regular, 3 boost treatments
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
Stage IV
Will begin chemo again soon ...

Philippians 4:6-7


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], KElizabeth and 26 guests