Just a lifer whining about being a lifer

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Steph20021
Posts: 492
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, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
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
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

cbsmith
Posts: 39
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: 381
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 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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SEWHAPPY
Posts: 86
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.
12 rounds FOLFOX done 6/16/17.

MDK
Posts: 44
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

musicluvr
Posts: 89
Joined: Fri Feb 21, 2014 8:07 pm
Location: Grand Rapids MI

Re: Just a lifer whining about being a lifer

Postby musicluvr » Sun Apr 09, 2017 10:02 pm

Thank you for this post. Although my signature isn't up to date, I am a lifer, on what they call "palliative " care. I have been on Erbitux ONLY for about 6 months and it is still keeping my lungs Mets under control. Some seem to have died. Is that possible?? Anyway, I am glad my Onc agreed to my unconventional treatment plan. I fear what happens when it stops working, cause I have certainly enjoyed feeling quite good. I have also taken breaks, one month here and there.
55 yo female
Dx CRC 2/17/14
T3 N1 M0
Perm colostomy 3/14
12 rounds 5FU
Small bowel obstruction 8/14
Multiple nodules both lungs 6/15
FOLFIRI + ERBITUX and 5FU started 8/11/15
Irinotecan reduced 40% , October
Chemo for life
12/15 NED, holiday next 2 treatments, then 5FU only
Mets are back 3/16
Erbitux + Irinotecan only; dropping 5FU
CT Scan 6/16 shows mets still there
5/17 been on Erbitux only
One met, lower right lung 4mm
Chemo break for 3 months
5 mets now on CT Scan. Back to Erbitux

debb
Posts: 151
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: Just a lifer whining about being a lifer

Postby debb » Mon Apr 10, 2017 10:28 pm

Hi! I'm also glad that you brought this topic up. I've been on this cancer ride since 2008. Except after my initial 3C diagnosis and 12 rounds of Folfiri, I've used surgery for recurrences. And that's been great for me because I can totally manage the recovery pain of a surgery; but, I fall to pieces at being sick for days from chemo.

But in August, after 14 lovely months off chemo (I did folfiri for 6 months to shrink/resolve multiple mets in an out of my lung), some of the nodes decided to grow a bit, and in addition, I now had rib involvement. So , I've been on folfiri again, and it worked again for me for shrinkage and reduction, but this time I was too scared to take a break (after 9 years of dealing with this, I let it get to my head and decided to use a safety net), so I'm on5-FU and Avastin. It still totally sucks and knocks me on my butt for at least 4 days and then 2 days to try to feel somewhat normal. But I feel like the low isn't quite so low as with the folfiri, so physically I am dealing with it. But mentall, it has invaded my space.

I'll prob be on this for a while. But as long as I'm on it, I am all for breaks to feel good for special occasions or mental health break. I mean, it's our lives, right? I know I'll take a break for a week in June because of a family beach vacation.

I do think that maybe you feel word because of the dehydration that you mentioned. When I'm on chemo , I drink h2o as if it's my JOB. Also, I don't get that neulasta shot, unless my numbers are bad. And they've been good. That shot tacks on a whole day or more of feeling gross for an extra bad feeling at the end! Consider asking your doc if it's totally necessary to get Neulasta.
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One year of freedom
8/16 Folfiri & avastin..lung things again

Steph20021
Posts: 492
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Just a lifer whining about being a lifer

Postby Steph20021 » Fri Apr 14, 2017 4:36 am

I've enjoyed reading the replies here. I feel less alone knowing I'm not the only one with these nagging thoughts of wanting treatment to end and wanting to be counting down like I did at diagnosis.

I have three fun things on weekends in a row in June plus a camping trip to a national park so we are definitely going to work around that. I've spoken to my onc about that already. I've also booked a trip to Mexico in early September as we haven't been anywhere hot and all inclusive since pre cancer. And I just felt I needed it. Money be damned.

I've been getting hydration a bit more regularly now and it's helped with the nausea and shortness of breath. I now believe it wasn't the WBC injections but dehydration that was getting out of hand. Since I've been on less pain meds (thank you radiation to abdo wall) my ileo is more liquidy and frequent so I've been upping my Imodium/lomotil. I haven't had to have the WBC injections for a second time yet because blood has improved.

I keep you all in my thoughts and hope for better days for all of us.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
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
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

User avatar
CaliforniaBagMan
Posts: 317
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: Just a lifer whining about being a lifer

Postby CaliforniaBagMan » Sat Apr 15, 2017 10:35 am

I wish you well. My good friend who has ALS is nearly unable to communicate, as the disease has progressed significantly in two years.

My only advice to her and those with cancer is that at least the disease gives you some additional time with your family, unlike a fatal car crash or accident. It seems hollow words though when I read how you are suffering, and see my friends situation. Prayers for you. I hope you get through the three years and have many many more.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07


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