The Colon Club

Hi everybody,
I hope you're doing ok.

Unfortunately, chemo is extremely tough on me. Is it because I'm just physically weak or is this protocol specially aggressive?

I feel tired all of the time for like a week after the infusion (so far, I've had 2). Diarrhea is difficult to manage (my oncologist lowered the dose of Irinotecan but still...) and I'm getting Neulasta (I think that's the American name -I live in France) shots everyday for 5 days after I'm disconnected... Nausea and diarrhea are side effects for that too... My oncologist tells me we can't stop the shots because this protocol is particularly nasty on white cells...
And next week, ta-dah!, he's adding Avastin to my cocktail... Will I survive chemo?

Hugs,

Paola

Hi ,

It is a tough treatment for some people . I think it would be reasonable to say we dragged my mum through chemo . She would be in the subgroup of patients that had a bad reaction . Frequently took three of us to get her from the car to bed following and infusion. All sort of thoughts were flying through my head .
Six weeks after finishing chemo she went sea kayaking off the North Coast of Scotland for the first time at 69 . It was fully the chemo that was making her so ill . Thankfully it was also doing a powerful job off knocking down the cancer . Now she tries to use surgery and no chemo where possible but she needed it at the start .

Rest and hydrate we’re about as much as she could manage .

She had a couple of extra rest weeks in between just to help her last the course .
Thinking of you ,
Stu

brokenwings wrote:Hi everybody,

... Nausea and diarrhea are side effects for that too...

Paola

Sorry for what you are going through. Couple of things that helped me. Ginger for nausea, either Ginger Snap cookies, Ginger Ale or Ginger Root. Also I always got an egg cheese breakfast sandwich on way to chemo. I found if I had food in my stomach I was less nausea, thus I tended to snack a lot vs eating 3 larger meals a day. And junk food is better the no food

I'm not real familiar with this and you would need to check it out via the search engine, butt many people on here found success (ie keeping side effects at bay) by fasting prior to chemo. Somehow by fasting, the chemo went straight to the cancer cells and by passed the good cells. Again you can research prior people on this site under the word fasting

Some people found success with nausea by doing some exercise, light walking maybe something to consider.

Can you switch for FOLFOX?

Make sure you are drinking a lot of water prior to chemo.

Good luck, I hope it gets better for you,

Lee

I just finished 12 rounds of FOLFIRINOX last month - it's definitely a tough regime. For nausea and diarrhea I found the first 4 rounds to be the worst, with it evening out by round 8. For nausea I was taking Emend, Ondansetron, and Prochlorazine which helped a lot. Neulasta sucks, I had such bad muscle, bone and joint pain it hurt to be touched for a couple days - but I didn't get sick with a cold, flu or fever at all, even with to school aged kids bringing home germs. I hope it gets better for you! My oncologist prescribed home hydration for me, for 5 days after the 5FU disconnect, so I'd get a litre of saline each day to hydrate and flush out the chemo since eating and drinking was a challenge. It really helped - not sure if this is an option you can explore?

I've been finished the 6 months of FOLFIRINOX for 6 weeks and I am feeling good. Aside from some occasional fatigue and pesky neuropathy in my fingers and feet I am doing well. Take care!

Thanks everybody for your replies and your encouragement.

@Kbelo: 12 rounds of Folfirinox, WOW! I'm still wondering how on earth I'll manage to survive to 6 rounds...

Hugs,

Paola

I completed 4 doses of FOLFIRINOX and got switched to FOLFOX for 3 doses, than 7 doses of FOLFIRI, 10 doses of 5FU, and 12 doses of hepatic pump chemo. I have been off chemo for 2.5 years, NED.
I took Neupogen, 3-5 shots as you did with every FOLFIRINOX. My oncologist was very particular about getting chemo regularly , every 14 days, No breaks, no delays to achieve the best possible response. I got complete response so it worked.
FOLFIRINOX was tough. I was progressively more tired every cycle. I lost my hair almost completely. EMEND helped me to control nausea. I was even able to fly on FOLFIRINOX. I walked 6 miles every day, even with chemo attached. I walked and cried sometimes but kept walking to prolong my life. Walking helped me to survive, to stay strong during a long year of chemo with short breaks for my 4 surgeries. I looked at the woods, meadows, changing seasons, and kept walking to NED.
My oncologist - Dr Kemeny was focused on getting the best possible response so I was on hepatic pump chemo just a week after my first surgery. Hardly any breaks during this long year.
However, I think this hard regimen really works. There were many researches confirming this combination FOLFIRINOX + Avastin had best statistics of resection and NED, even cure at the end of the road. You have a good oncologist who is fighting this battle with you and knows what he/she is doing. I know it is hard.
Stay strong and good luck!

Dear Mariane,

Thank you so much for your message. You really give me hope!!

I'm glad the treatment worked so well on you and you're NED now.

I'll try to "survive" Folfirinox!!

Hugs,

Paola

Thank you, Paola! Hugs!
One more thing, hopefully useful. I received Atropin with Irinotecan and it really helped with diarrhea. Honestly with Atropin I had more like constipation. I am in general very sensitive to meds.

Yes! The shot of Atropin did help a little.
Anyway, now I'm (sadly) on opiods because of intense pain caused by a kidney to bladder stent, so the diarrhea won't be showing up this time I think (as opiods tend to slow transit).

Have a nice weekend. Here in Paris we have another sunny saturday (two in a row, just a miracle!).

Paola

Paola,
Please power through it. It was definitely hard but with a lot of encouragement, my husband finished it. He did 6 cycles before and 6 cycles after liver surgery. With one sever diarrhea episode with fever after cycle 4 which made him hospitalized for 3 days. He did it total 12 cycles and have been NED for two years. You can do it too. I am rooting for you.

Hello Milk Tea,

How sweet of you to encourage me like that! Emotional support's so important for me in order to get through this rough time...

I'm glad this treatment worked so well on your husband.

Some good news: my CEA wen't down from 8.5 (normal range up to 5) to 6.5 after two chemo cycles. I might be on the right track

Hugs,

Paola