Starting Folfox on Monday

[Noon32316]

Hello everyone,
I begin my 6 months relationship with Folfox on Monday. I’ve been reading different experiences and tips here and there to mentally prepare for this next step in beating cancer. I wanted to say I really admire all of you for your strength, patience, courage, and humor throughout your fight (hoping some of that will rub off on me as times goes on). It’s been tremendously overwhelming but I’m grateful there’s a space for all of us to share information and commiserate. I'd love to read more stories if you'd like to share. I’m nervous but also relieved, after what seems like an eternity of waiting, to finally begin. No matter how ugly it gets, we’re all hand in hand, heart in heart, mind in mind. And we will win.

“Under the bludgeonings of chance, my head is bloody but unbowed.” (W.E. Henley)

[CFrancis73]

My Mom just completed 12 rounds of modified FOLFOX 6. I wish you all the best! If you have any questions, i will try to answer the best I can.

[nomoretacos]

Thought i'd pop my head in and say hi, i'm more of a lurker here. I noticed we have similar stories, in our 30s, stage 3c, sigmoid colon but i'm slightly ahead in that i've done two cycles of Folfox with next week being me third. I was like you wanting to start treatment and get it over with so I know how you feel. For me overall chemo hasn't been all that bad but I guess it's still early days. So yeah, just know theres so many of us going through the same thing right now and you aren't alone, we will win!

[Nik Colon]

My tx story link is in my sig. I started on folfox also which you would see in my first posts. Best wishes

[MikeManess]

Trying to not hijack your thread, but I had my first round of Folfox today and thought it might be worth sharing with you.

Yesterday (Thursday) I had my port put in. Not too bad, but wish they had knocked me out instead of just numbing the heck out of me. But I survived and the only thing that hurt a bit was the injections to numb my shoulder and neck. It smarted a little, but only lasted a few moments.

My particular chemo cocktail I was given for my first IV rounds were anti-nausea drugs and steroids. Next was iron, because I'm a bit anemic from the tumor. Finally, the Folfox. The Oxaliplatin and Leucovorin were the first of the Folfox cocktail given, and were given together. This took just over 2 hours. Finally, a bolus of 5-FU was given, which took about 15 minutes, then the fanny pack of 5-FU to take over the next couple of days.

Everyone is different, and their response to the various chemo drugs is different. So your mileage may vary (see dealer for details). The effects I have noticed thus far is some fatigue, the beginnings of tingling and numbness in my fingers and a tiny bit in my toes, a brief introduction to bite pain and cold sensitivity in my mouth, and for some strange reason I have muscle weakness in my left hand. It's not a listed side-effect that I could see on quick glance through the papers I have so don't know what's going on there.

I also notice just a slight bit of nausea, but not much. It's sort of like the nausea I get if I get hungry and don't eat.

So I have only 11 more to go - you'll be where I am now Monday evening. So far, it's nothing to be scared of, we knew going in that this isn't KoolAid and there would be some side-effects. Knowing and experiencing are two different things, but I'm happy to be experiencing it because the alternative is something we don't want to experience. So far, it's nothing to be scared of, so don't stress too much this weekend about it.

Take care!

[ANDRETEXAS]

You will do just fine. I am glad I had my FOLFOX during the summer instead of the winter, especially as I had some sensitivity to cold drinks and touching the stainless steel refrigerator. Just don't get ahead of yourself. Take one round at a time. Discuss any side effects with your doctor each time before you have an infusion. Communication is key. If you have any questions as you go along, there are wonderful people here to answer them. Good luck and hang in there ! Andre

[Nik Colon]

Yes, warm weather is far better then starting in the winter trust me it's no fun when it's freezing outside. If you do feel it's too cold ask the nurse if you can take the blanket/sheet home with you I had to at times without thinking about how cold it was going to be outside. Luckily where I went at that time they have valet parking so I could wait inside until the car was pulled up to the door. Starting in January in Minnesota was not all that great I tell ya

[midlifemom]

Trying to not hijack your thread, but I had my first round of Folfox today and thought it might be worth sharing with you.

Everyone is different, and their response to the various chemo drugs is different. So your mileage may vary (see dealer for details). The effects I have noticed thus far is some fatigue, the beginnings of tingling and numbness in my fingers and a tiny bit in my toes, a brief introduction to bite pain and cold sensitivity in my mouth, and for some strange reason I have muscle weakness in my left hand. It's not a listed side-effect that I could see on quick glance through the papers I have so don't know what's going on there.

Take care!

Mike, muscular issues are a known side effect of oxaliplatin. My left leg would go numb after treatment. This stopped when dose was reduced. Be sure to discuss this muscle weakness with your onc. Pay attention to whether it's getting worse or lasting longer. Best of luck.

[H is for Hawk]

Because your pathology report indicated 16/16 lymph nodes were positive, it is very likely you have disease in some other lymph nodes. You might want to consider asking your oncologist to treat you more aggressively, more than standard-of-care, like adding ironotecan to the FOLFOX, which is called FOLFOXIRI. Chemotherapy generally works better with a minimum tumor load, which is where you are right now. Since you are young, you can probably tolerate the additional side effects.

[Tim UK]

I think you'll find the chemo fine. Watch out for the anti-emetic steroids (e.g.dexamethasone) ... they can make you very hyper then, after a few days, very low and blue. If you're aware of the reasons, it's manageable. If not, can be very disorientating. You might ask your oncologist about avastin. I took it together with folfoxiri, shrunk my liver mets very well. Also, you might want to get a pre-chemo PET scan to make sure there are no mets.

Best of luck.

[Lee]

Good luck with your first infusion. Remember to drink a ton of liquids a day or two prior. You will lose it in those first few days. Avoid getting dehydrated, that could bring on a host of other issues. Drink Ensure as your food will soon taste like cardboard. For me, keeping food in stomach kept nausea at bay. And junk food is better than nothing.

I kept mitts next to freezer to get things out as needed.

Report any reactions to your Onc, sometimes they will increase with each infusion.

You will get through this,

Lee

[jens22]

I think the hardest thing for me was the anticpation of that first treatment. Finally starting to feel well after the surgery and the fears of being sick .....My first infusion was uneventful...I kept awiting for the vommiting and nausea to start.....I was so made that my husband didn't fill my " Just in case Nausea meds" and that he left me alone in the pharmacy to get them after the infusion. I was so sure that something bad was ging to happen when I was alone.....Well...The nausea didn't happen and I got home just fine.

The anticipation is worse than the treatments.

You've got this!!

[NoFear32]

Everyone has given you great advice so far, so I would just say that if you have an overall sensitivity to medications (like I do) ask for as many anti-nausea medications that you can get your hands on. Make sure that you write down and report ANY symptoms and report them to your onc, no matter how weird they might be. And buy some squishy warm comfy socks to keep your feet warm

I was only able to tolerate 8 rounds of chemo (still considered full treatment) because the side effects were getting really bad, but now that I am 8 months out from my last chemo treatment I can pretty much do all the same things I used to do before. Most people do have some lingering or even permanent damage done by the chemo after they finish treatment, and mine consists of numb feet, fatigue, and joint soreness, but many of these symptoms are slowly improving or becoming more tolerable as time goes on. I never realized how much I loved being healthy and active until I went through chemo and couldn't do the things I wanted to, so it has given me a whole new appreciation for many things in life that I used to take for granted.

Good luck and stay strong!

[Noon32316]

Many thanks for all the advice and support!! As of this hour, I'm optimistic and hope that feeling will last for a while longer. I'm trying to keep busy by assembling my chemo kit: blanket, mini pillow, notebook, ipad, crackers, water, book - I appreciate ebooks but still love the smell and feel of print books, x?, y?, z?. Also deciding what games will be the most distracting/addicting (candy crush? fruit splash mania? bejeweled? word games?). I don't play much but figured what the hey, might as well make it part of the routine.
Again, thank you for lifting my spirits.

[Pita]

Something different: might want to try adult coloring book, kit came with 6 pencils, friend bought me 36 pack so I could be creative. Toy Blast is a game I love, very distracting as well as Mahjong3 from the Google store, maybe they have it for iPad. I play Dice for Buddies with my husband on my Android tablet and phone and he's Apple.

Steroid drip made me crazy, poor hubby thought I was going to attack him when he asked me a question. Took 1/2 of Ativan every session after that first episode and I was fine, no more effects.
Good Luck Noon!