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Just a little whining to vent some frustration

LSU2001
Posts: 23
Joined: Dec 2017

As some of you know, I have been dealing with stage IV rectal cancer and liver metastasis for almost 3 years now.  I have been on a break from chemo since October 3, 2018.  I went for my routine checkup on December 18th at MD Anderson and I found out that as expected the lesions on my liver had progressed and were growing again.  My CEA was 3.1 on November 14th, and had climbed to  14 on December 18th.  MD Anderson docs scheduled me for a PET scan on January 8, 2019 to see if I could get an RFA done on the lesions.  On January 9th I met again with my oncologist at MDA and found that the lesions had really taken off since my december visit.  My CEA went from 14 to 37 in less than a months time and that due to the size and number of lesions, I was not a good candidate for RFA and that I needed to get back on full strength FOLFIRI + Avastin as soon as possible.  It looks like I will start back on chemo next week around the 16th.  

It is so frustrating dealing with all of this mess.  I get a little hope that things are under control and that a possible RFA could wipe out most of my lesions and give me more time off of chemo but that is not to be.  Based upon my previous 38 chemo treatments, I know that I will be fighting some pretty bad side effects.  Mainly nausea, constipation, fatigue, low blood counts and general malaise.  I guess right now I am just in a place dreading going back on chemo, but knowing that I must.  My cancer seems to be very agressive and if I am off of chemo any length of time it progresses or re-occurs.  I just don't want to accept that I will have to be on some kind of chemo until this beast eventually kills me.  I just hope I can have a decent quality of life while trying to keep the cancer contained and stable.  I also decided to go on long term disability from my job because, even though I have worked through all of my surgeries and treatments with only a few weeks off here and there, I feel it is time to focus on my health and fight the side effects better.  I know before, I could barely get to work most days and had to force myself to power through only to be exhausted by day's end.  I don't really want to do the disability thing but I think the time has come to enjoy whatever time I have left the best way I can. 

I guess, whining helps a bit because I feel a bit better just putting this out there.  

Tim

ABQchica's picture
ABQchica
Posts: 24
Joined: Nov 2018

not whining.. I just did it msyelf and I've only had 3 chemo treatments..! My nausea was intractable with just zofran and compazine and I quickly leared zofran is VERY constipating. We added Emend IV, scolpalamine patch that I applied days 3 and ativan. My nausea didn't completely go away but it was manageable (without using zofran and the misery of being blocked up). Hopefully your oncologist has helped you expxlore options...

I think for eveyone we need to take the time to listen to our own hearts. If you can't work with the chemo then make the choice that offers you the best quality of life.. because that is ALL that we are fighting and hoping for. Life.. as good as it can be.

Michelle

 

LSU2001
Posts: 23
Joined: Dec 2017

Thanks for the feedback.  I had some horrible nausea when I first started my treatments and the doctor finally gave me a prescription for marinol.  The main concern was that the nausea caused me not to eat much of anything on chemo weeks so for two weeks a month I basically wasn't eating.  On the off week, I would eat but still didn't really want anything so the weight was falling off.  I went from about 235 down to 172 within a year of being diagnosed.  I am currently holding my weight at around 200 lbs.  The marinol caused me to want to eat and it really eased up the nausea.  I also keep zofran handy since it works well for me and I don't seem to notice much additional constipation from it.  YOu may want to ask your onc about the marinol before you start losing lots of weight.  I have since found the Rick Simpson Oil, a cannabis oil, works better for nausea and the appetite.

Tim

 

SoCal42's picture
SoCal42
Posts: 12
Joined: Jul 2017

I was halfway through chemotherapy before we found an anti-nausea combo to control nausea a reasonable amount: IV Emend + IV Aloxi + oral Decadron, Zofran and compazine. By “control” nausea, I really just mean enough that I wasn’t badly dehydrated...  You’re so right, all these meds were horribly constipating!

Joan M's picture
Joan M
Posts: 335
Joined: Oct 2016

Just look at this time off of work as an early retirement, as some people are lucky to do even in good health.  Unfortunately for us, it may be our only chance to gain from our social security or retirement funds since we may not be here after our "normal" retirement age.   

I stopped working after hearing I had "6 to 18 months"  to live... that was 3 years ago.  I am so glad I've been able to enjoy my time instead of fighting a work schedule on top of this disease.  I may not have taken this time if I thought I'd survive for years instead of just months.  Sometimes I do great and think I should go back to work, then I have chemo again and am so tired I just want to sleep all day.  

It can get boring sometimes, not often though.  I keep busy most of the time and am even able to work out at the gym somedays, but not always of course (chemo days).  

Thanks for posting about the nausea meds that work for you, I have been throwing up even with the pre-meds and taking compazine and zofran.  I will ask my doctor about some of these other meds next time.

Hope you enjoy your early retirement! 

Joan

Annabelle41415's picture
Annabelle41415
Posts: 5908
Joined: Feb 2009

We are here to help you get through all this.  It's good to come on the boards and express your concerns and anxieties.  It's hard getting through all of this and I'm sorry you have to deal with even more.  Just want to let you know I'm wishing you well.

Kim

LSU2001
Posts: 23
Joined: Dec 2017

thank you for your post. i really needed some encouragement.

Tim

tanstaafl's picture
tanstaafl
Posts: 1285
Joined: Oct 2010

...just in a place dreading going back on chemo, but knowing that I must.  My cancer seems to be very agressive and if I am off of chemo any length of time it progresses or re-occurs.  I just don't want to accept that I will have to be on some kind of chemo until this beast eventually kills me. 

One trick for us was to find nicer chemo regimens that could control various cancer sites with less toxicity.  Some sites responded to mild chemical changes.   Fast dividing cancer cells' weakness is their rapid division if you can kill or inhibit them with continuous 5FU and other milder things but toxic specific to them. 

Other patients have improved their standard chemo tx by added chemistry - Luvinlife2 gained about 3 years adding IV vitamin C and vitamin K3, along with other supplements to Folfiri-Avastin.  

Some kind of chemo doesn't have to  be miserable but it is probably not "standard".  

Some of the easy pieces of information to seem to  be missing are your KRAS/BRAF status; vitamin D and CA199 levels.

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