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Folfox Treatment #1

Momof2plusteentwins's picture
Posts: 508
Joined: May 2012

Surgery 4 weeks ago, rectal tumor, liver tumor, and gallbladder out. My CEA before surgery was 54. Yesterday I had my port changed out, my port would kink and leak chemo all over, so I haven't been able to use it since April. After getting my new port I went straight to Oncologist office to start Folfox. So far only side effect is not able to drink cold drinks. Slept all night and not tired this am. Went for 2 1/2 mile walk this morning. The only pain now is having the 5FU pack stuck to me for 48 hours. My CEA level is now 0.5 YAY. Drinking lots of room temp water and putting udder cream on my feet. 11 more treatments to go. Best wishes to everyone.

Boy was I ever wrong! Chemo on Tuesday, by Wednesday night nausea and exhausted. Now all day today can't eat or drink. I ate a few plain cherries and vomited. When will this go away, I feel like I am dying and this is only treatment 1!

Brenda Bricco
Posts: 579
Joined: Aug 2011

You hear so many horror stories about chemo (some are true) that we tend to expect the worst. My husband did very well on the treatment that you are on, he did have a couple times that he felt worse than others but for the most part he was good. He talked about the sensitivity to cold (when drinking and hands), he said he seemed to get tired the day that we disconnected the pump.
Sounds like you are doing everything right, exercise when you feel good and resting. I am glad to hear that you are tolerating treatment, the chemo nurses told us that if you did well with the first treatment there was no reason to expect it to get worse.
Oh, and your CEA is great, Congrats!

Momof2plusteentwins's picture
Posts: 508
Joined: May 2012

Im glad to hear your husband did well, that gives me hope that it won't get worse, of course we are all different. It really had me worried after reading all the bad side effects and hearing all the stories. Hope your husband is doing well.
Sandy :)

Posts: 1
Joined: Jan 2012

Sandy ,
I am glad to know that you are tolerating FOLFOX regime very well.I am shaheed from Saudi Arabia.My wife had adenocarcinoma of ampulla of vater.She had a course of Gemcitabine but as her tumour marker did not come down she was switched to FOLFOX.She tolerated 5 cycles but refused the 6th cycle do.It is 3 months since she stopped FOLFOX.She is complining rigt sided abdominal cramps.Did you exerience any such pain?If so is there any treatment for it.Can any one help .Our oncologist say it is not due to FOLFOX and he reasurred.

Posts: 372
Joined: Aug 2006

My advice is keep a viligent eye on your Folfox treatments. I did the full 12 and ended up with Folfox induced Cirrhosis. I started getting warning signs around treatment seven but they were ignored by the oncolonist. He said my liver was leaking but it would go away when the twelve treatments ended. I was cancer free again on March 23 2010 but admitted to the hospital for thirty-four days as my abdomin filled with fluid to over 50 inches; blood pressure dropped to dangerous levels; kidney nearly completely shut down; weight went from 214 to 145; loss all muscle mass and fat; couldn't walk on my own anymore; permanent nervopathy in legs and feet; well below normal platetes, while blood and red blood cells; forget a normal life. Six months of physical theraphy to learn to walk again and build endurence; weight back to 190; hit the gym very other day; cirrhosis is unrepairable but when the chemo stopped so did the damage so far according to ultra sounds. They give me two to fifteen years before the cirrhosis takes my life. I have my colon and CEA tests coming in August and I am concerned because I will NEVER do chemo again. My Onc says it is extremely rare for Folfox is have this outcome. He also said there is no way to prove it was the Folfox and of course his neglect. But all other causes of cirrhosis have ben eliminated. So keep a close eye on what is happening and quit if need be. Best of luck

Posts: 520
Joined: May 2011

I would eat small frequent meals chicken, rice, toast, mashed potatoes, scrambled eggs. Need to stay hydrated. I drank decaf tea which soothed the nausea. Tea and Toast helped. Also, decaf coffee with protien powder as creamer helps one not lose muscle tone. Chemo week was small meals, protein, warm drinks. Do a short walk or just take it easy. A couple days after being disconnected, back to a regular diet and eating healthy to maintain weight. Take each Folfox treatment one at a time. We are here to help you and support you.

Posts: 1428
Joined: Feb 2011

Seems to be a common thing when the pump would be disconnected is the day and next day I would be fatigued too. I didn't have folfox, I had folfiri. My very first infusion was the only real time I actually vomited....the later infusions just felt yuckkky, didn't vomit or feel close to vomiting. Are they giving you the pre-meds for side effects, anti-nausia?? My oncologist prescribed little blue pills, have no clue what they were called, but basically it had on the label take as needed...so he left it pretty wide open as to how many I could take.

Phil64's picture
Posts: 835
Joined: Apr 2012

I started treatment 3 on Thursday. Going to be disconnected soon (15 to 20 minutes). I have had the cold sensitivity (not too bad), jaw hurting, fatigue. I have been able to walk - just completed a 2-1/2 mile walk this morning. But the worst of all for me has been the constipation. Treatment 2 was a major struggle with constipation. Then after laxatives I went from constipation to diarrhea. Has anyone else battled the constipation? I am now taking stool softener everyday and trying to drink a lot more water than I have so far, but here it is disconnect day and I'm constipated again (haven't gone since Thursday).

golf_gal's picture
Posts: 69
Joined: Dec 2011

Miralax is tasteless and you can regulate how much you take. Experiment. I did 2 colace twice a day during anal resection. Second time, miralax with the lymph nodes removal. As u know the constitution is prob from pain med, but diff for everyone. I pray for relief....I know how it feels.

abrub's picture
Posts: 2146
Joined: Mar 2010

I took Colace and Senna every night during chemo, starting the night before hook-up, and lasting at least through the 3 days. It kept me more regular. Before I started doing that, constipation was a regular part of my chemo side effects.

Good luck in finding what works for you. My surgeon is the one who suggested the colace/senna combo.


golf_gal's picture
Posts: 69
Joined: Dec 2011

Marinol is an anti naseau drug that's been around for fifty years. It's synthetic the, so it helps with appetite. I also took two others, ill get the names and get back with you. Best regards, Jamie

tommycat's picture
Posts: 790
Joined: Aug 2011

Once all the steroids, anti-nauseas, magnesium etc wears off, you get hit by the unadulterated chemo. For me it was 2-3 days after a major infusion, and then that feeling would last 2-3 days.
Now doubt about it, it can be very difficult.
a couple of things that helped me were....
treating myself very gently
sitting in the morning sun
talking with people who had been there (we are all here for you!)
and remembering that THIS TOO SHALL PASS.
The feeling is finite...it sucks while it's there, but it does go away.
Hang in there~

golf_gal's picture
Posts: 69
Joined: Dec 2011

I'm confused .... If you are having physical pain at port site you need to call Dr. There should be no pain during the 46-48 infusion from your "Fanny pack"

Momof2plusteentwins's picture
Posts: 508
Joined: May 2012

Three days after being disconnected I can finally eat and feeling better. Still have headache. Four days of feeling like dying. I did get zofran for the nausea non Friday and a bag of fluid which did help. This is going to be so hard every other week for the rest of the year. I have the best husband that is taking care of everything - me, our boys, cleaning the house, and running to get anything for me. How do people do this alone??

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