Who Here Has Been on CMF for Stage 4?

blainejennifer

I've just finished up 7 cycles of Halaven. TMs are 21, and the PET scan said I had no visible disease, except for some of the bone areas, which will always be with me, silly bone.

So I asked my Onc if I could switch to a regimen that didn't kick my ass quite so much. I've run through the anti-hormonals, of which I only got real traction with Faslodex (13 months). So, he suggested that I try CMF. The thinking being, that should trouble come later, I can always go back to Halaven, as I would have left of my own accord. Even though I've done a year of Xeloda previously, off we go to CMF.

It is an oldie but goodie, and has no reputation of neuropathy or anaemia.

Has anybody here been on it? What is it like?

I'e never been in a remission before. I know they can be fleeting, but Fall seems like a good time for it.

akshelley

See also "CMF Question" Board for more entries.

blainejennifer

Thank you. It was very informative. I might keep posting data here for Stage 4 patients, as I'll be doing CMF until it fails me. It's a bit of a different scenario than those doing it for curative intent.

To that end, after having the infusion on Thursday (all infusion, no pills), I felt pretty good until today, Sunday. Woke up in the middle of the night with nausea and aches. I will prepare better with pro-active anti-emetics too weeks from now, when I have my next infusion.

babs6287

Hi all

I am starting CMF this Thursday. I'm a bit nervous about it. I just finished 10 months of Xeloda which brought me to NED but only for 3 months when my liver mets decided to come back. Hoping this keeps me stable or better!

Bab

blainejennifer

Hey Babs,

I'm going to have a CMF buddy! Is that too juvenile? I swear, I felt a summer camp thrill when I saw your post, putting aside the fact that we have cancer and that's pretty sucky, and all that.

How did your hands and feet do on the Xeloda? I loved Xeloda - pills, no infusion, and my hands only got a bit bad towards the end.

My chemo nurse (who is amazing) put me on a slow drip for all the components. They are delivered separately, and not mixed in the same IV bag. I think that the M is delivered via a slow push into the IV. I had a lot of Ativan, but it's the yellow one.

Jillian, the amazing nurse, said the only thing that was odd about this combination is that it can give you "Wasabi Syndrome". That's where you feel like you've gotten a bit of wasabi mustard up your nose. She strongly recommended a slow drip for everything to prevent this. I was there for four hours, but only had about 30 seconds of nasal weirdness that night, so I think she called it right.

I'd been on Halaven for 7 cycles to mash some liver mets into submission. It worked, but I found it a very tough chemo. I asked for a kinder regimen, and they came up with CMF. Let's hope we all have a smooth, long ride on this one!

babs6287

Blainejennifer. Thanks for your post. Yes. Happy to be your buddy!!!!So happy to have someone with the same treatment. How many infusions of CMF have you had??? What SEs have you experienced??

Thanks!!!

Babs

blainejennifer

Babs,

Last Thursday I had my first infusion. The pre-med steroids kept me peppy through Saturday night, when I was woken by nausea. Sunday was a "down" day, and I started feeling better by Monday.

So, as chemo goes, not so bad. I'll be clever and take the anti-nausea tablets Saturday evenings after the infusion. CMF has a reputation for being constipation inducing, so I made sure that I had plenty of fiber and took the proper remedies. So far, no troubles in that area.

How great is it that we only have to do this once every three weeks?

All my nurses have told me to keep pounding the fluids back the day before, the day of, and the day after. I did. and next time I'll be asking for the chair nearest the restroom There is a small possibility of developing a bloody cystitis from one of the components, so they are keen to have your bladder being flushed continually.

If you don't have a port, I'd ask your doctor about getting one. Frankly, the actual experience of IV chemo is easier with a port. You have the use of both hands during the infusion (makes those restroom visits so much easier), and accessing the body for chemo is easier than trying to get the needle placed just right in a vein. I'm needle phobic, so when I was diagnosed with stage 4, my doctor said that I had to get one, so I did. No more fainting and crying in the infusion chair. In my defense, I only fainted the once, but I was a constant cryer.

I'll be thinking of you this Thursday, and wishing you an easy day.

babs6287

BLaine jeeni. I previously had a port which was removed when I thought all was good-silly me!!! We're never really good!!!! I haven't been told anything to do prior or about constipation. Wonderful!!! I was told the infusion would take about an hour and that I didn't need a port since it's every 3 weeks, not more often. Thanks to you I may not have many surprises. If you hadn't written I'd be one surprised lady!!!

Thanks so much!!!

Bab

babs6287

Blainejennifer Had my chemo tonight. They pushed two of them in my IV and the cytoxen as a drip. Took about 45 minutes for the drip. No issues other than a headache now. I'll see how I feel in a day or two!

Babs

blainejennifer

Babs and Shelley,

I'm heading into my 4th round of CMF, and just found out today that my TMs are staying very low (20.7). I am feeling so much better than I was on Halaven, even though Halaven worked beautifully. The only bad days are the steroid crash days two to three days after the infusion. I could do this for a long time, and hope I get the chance to do so.

How are y'all doing?

babs6287

Blaine. Thus far I've had 2 infusions. Having my third next week. At the last one my TMs shot up so I'm thinking this might not be working but we'll see next week. In the meantime they moved up my next scan by a month. This is quite the ride!

But I do feel good

Babs

blainejennifer

Babs,

Tumor flare is a real thing. When I went off Tamoxifen and onto Taxol, my TMs shot up from 2,000 to 2,600. Three months later they were down to 400 ish, and two months after that, 75.

Stay the course for at least two more cycles. The TM test doesn't differentiate between dead or living tumor cells. The scan should be quite helpful.

Hugs,

Jennifer

babs6287

Thanks Blaine. My MO also said to give CMF at least until my next scan

Bab

Dianarose

Hi, I did cmf back in 2013 and had no issues other then I did lose my hair. Never even took a nausea pill. I stayed working as a pastry chef which was good to keep me active. Sleep was difficult and no taste was but it was not bad at all for me.

I wish all of you the best... Diana

Dianarose

babs- insist that they do the two pushes very very slow and you won't get the headache. I had one bitchy nurse push one in under two minutes that should have been twenty and I thought my head was coming off. If she won't slow down insist on another nurs

babs6287

Diana. I didn't have a headache the last time. When I told the nurse about my first treatment she automatically did the push slowly.

Thanks so much

Bab

sharethehope

blainjennifer,, was on CMF 4 5 months don't recall anything drastic. Hair didn't fall out just shed like a collie in July.

blainejennifer

I feel you with the shedding. I'm keeping a crewcut, as I have male pattern baldness and very thin hair.

Did anybody else have vision changes? I have extreme nearsightedness, but my eyes have been stable for years. On CMF, my distance vision has degraded lots. Or as the eye doctor put it, "Uncorrected, you are now almost legally blind." Good times.

babs6287

I couldn't get my chemo yesterday. Blood counts were too low. Leaving for Paris Monday night. Will hopefully get chemo on my return. I too am shedding like crazy. Not so good since I'm at the front desk of a hair restoration specialist. Oh well!

Bab

blainejennifer

Have fun in Paris, she said, writhing with envy