CMF 'shopping list' top tips etc - ?

puncturedbicycle

Hi folks. Is there a thread here specifically for CMF tips and hints, starter kit, SEs etc? My mom gets her first CMF (all IV) treatment this Tues, which is likely to have less severe SEs than other chemo cocktails, so not sure if a lot of the usual chemo kit will apply, but I want to be prepared for the SEs she is likely to get. I'd be grateful for any recommendations for a specific shopping list/starter kit for CMF. Feel free to send a link if there is one and I missed it.

She will also be getting IV decadron, pepcid and kytril pre-meds as well as fluids.

I'm especially keen to head off any constipation problems straight away because I know that will drive her nuts. Not sure if that should be a stool softener, laxative or fiber supplement - ? We don't want to overshoot the goal and go too far in the other direction either. :-) So I thought some kind of fiber thing you can take every day to keep things as they should be without being overstimulating - ? Preferably nothing gluey or chalky or otherwise unpleasant to take. Recommendations gratefully accepted.

Are mouth ulcers likely to be a problem? Should we have something at hand for that?

Or am I overthinking it and they will tell us what to do on Day 1? I have about a hundred fat leaflets about the ins and outs of all the drugs she'll be on but tbh I had a migraine yesterday, my mom is moving house on the 15th etc and I would be ever so grateful for a bite-sized chunk of easy shopping list info. I think I can speak for my mom too when I say that we were fine for surgeries and rads but we are both SCARED of the chemo experience. Even though as they keep telling us this is 'chemo-lite'.

Thanks all. So grateful for this forum.

Vanmama

I've now had 3 rounds of CMF, which hasn't been too rough. I do have lots of side effects that come and go. My constipation is not bad so I don't take anything for that. I do get a sinus headache for a few days at the beginning, a really sore tongue but NO open sores in my mouth, body aches, and I have nausea off and on the whole three weeks between each round.


I have continued to work my job though I do take off the day after the infusion because I've been up all night in the bathroom due to the amount of fluid that gets pumped in me. Cytoxan is the only chemo that is in a bag, for me. Methotrexate and 5-FU are both pushes (injections into my IV). I do get the usual anti-nausea, steroids, etc


CMF really is less toxic so I have never been confined to my bed or unable to function. I do have food aversions that come and go. Sweet And spicy things do the best and my water has to be very cold.

I find it very manageable.

Laura

puncturedbicycle

Hi Laura. Thanks for your reply.

I'm so glad you're doing well with your treatment. Yes, we are told that it is very manageable and I think it's just the anticipation that's getting to us. Also my mom has a lot of other life-changing stuff going on so we're just overwhelmed in general and trying to stay on top of things.

Is there anything in particular that you use to help with the mouth soreness or aches and pains? And is there anything you like to bring with you when you go to get your infusions to stay on top of it all?

I'm sorry to hear you have the nausea despite getting all the anti-nausea stuff. I think nausea and constipation are my mother's biggest worries.

Vanmama

My surgeon actually prescribed a magic mouthwash--it's a mix of Lidocaine, Maalox, and Carafate. I use it when my tongue is really getting me down. I also brush my tongue when I brush my teeth.

I just take my IPad, an icy drink though the volunteers come around every hour with ice, drinks, and snacks, and a book. I'm easy maintenance.

Oh, and I usually shop after my chemo--I go to just one store, but I'm perfectly fine doing it. Then I go home and fall asleep in my chair!

I do have medicine for my nausea but I hate to take it.

Oh, and we're in the process of renovating then moving into a different home, all while dealing with breast cancer, working a full time job, and my husband is a farmer, so working hard right now.

Laura

puncturedbicycle

Wow, you have a lot on your plate! It sounds like you're in a similar situation with moving/building. My mom's house was damaged in Sandy in 2012 and at the moment, she is about to make her fifth move (she's buying a small retirement home to live in while her house is rebuilt). So: buying. building, moving and cancer. It's a lot to do. I keep telling her when she finally gets home she will sleep for a month.

I'm here for months at a time but I'm going home for five weeks after she moves and has her first infusion, so she is worried about travelling by herself. Do you drive yourself to chemo? My mom can take the bus or train to Manhattan if she has a friend come along but I'd hate for her to go alone. It's hard to plan for if you don't know how it will affect you.

The whole thing is so fraught with worry, the line between planning and overthinking can get blurred. :-)

Vanmama

I work in the morning and go to chemo by myself. It has never been a problem for me. I feel fine when I'm done.

Laura