CMF Question
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I had my Day 8 meeting with my MO today. He, too, said to take the anti-nausea meds. He also reminded me to have ice in my mouth during the infusion, AND he gave me a script for a pain med, for the really rough days (of which I've had just a few). My lab numbers were all awesome, he said. I love this man. He's just the best cheerleader to build you up but so concerned for your well-being.My weight was down a whole pound (I have no idea how), my blood pressure was just a dab lower than usual, and I haven't lost my hair. My side effects are not horrible, just annoying, for the most part. It's a good day!
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Vanmama - Does he want ice in your mouth for the Cytoxin drip, or the push meds? I'm curious as to what side effects you are having that require pain meds, seeing as I'm a dose behind you. Seems as though round 2 was tougher on you????
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Vanmama
I was able to deal with the nauseousness with the anti-nausea meds. The nurses told me to stay on top of it and take them before I even felt sick. It took me about 2 treatments before I started taking them correctly and what a God sent. prior, I would be nauseous. But once I got a handle of my meds, being nauseous became a non-factor...They worked for me. For some reason I only had an appetite for Kraft macaroni & cheese during chemo..
I sucked on lemon drops because of the taste in my mouth. It tasted like I was eating pennies
. So the lemon drops reduced that horrific taste left in my mouth and it also soothed it. I made sure to walk with the crystal light packets in my purse because drinking water was revolting. I'd just mix it in with a glass of water and made it tolerable. For chemo brain. I made use of my cell phone camera. I would take pictures of my parking location whenever I'd go somewhere. I was very forgetful. I once walked around a huge mall parking lot, pressing my car keys for over an hour crying because I completely blanked out on where I had parked. I couldn't think. I did that at the supermarket and at work. I always park in the same general location every day but during chemo I'd be on the other side of parking lot looking for my car...it was frustrating. ...smh.. But that camera phone saved me from that... If you work, keep a "To do list"
Neuropathy became an issue. I started taking Vitamin B6 at first and eventually effexor which helps with depression and also is great with hot flashes..
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Softness--did the symptons you describe kick in after treatment 1, or did it take a few. Fortunately, after 1 treatment, I have not experienced the metal mouth....
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The ice is for the drip. The first time, the nurse brought me a cup of ice and said to suck on it while she was getting it going. The "pain" is actually the headache that hangs around for a while. I am on a blood thinner for a-fib so I'm only supposed to take Tylenol. It doesn't begin to touch it. Since I don't have any pain meds in the house, he thought I might benefit from having them.
My side effects happened on Day 3 this time. They really aren't horrible. Mostly, they come and go. So far, it's been headache, sore tongue, bad taste in my mouth, sore throat, exhaustion, and NAUSEA. I'm still working full time around my appointments, so...so far so good I think!
Laura
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I experienced headaches too. I was wondering if it was from the CMF, or from the Zofran. I'm going to ask them to slow the Cytoxin drip next time, to avoid the sinus headache I got last time.
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SueH58,
It was cumulative. My first treatment was on Valentine Day 2013, a Thursday. (I always had chemo on Thurs & would take the Fri & sometimes Mon off work)
Anyway I went to went out to eat & didn't feel bad. By Sat. I was a little nauseous. The 2nd time I had that metallic taste in my mouth. I couldn't eat ice or drink water because it was gross. I started taking my anti nauseous med because I got sick..By my 3rd treatment, I thought I'd lose my hair. Every time I brushed my hair a bunch came out. So I started using a big tooth comb & no more ponytails. My nurse told me to be gentle with my hair. My hair thinned a lot but no one could tell.
I'll say by the 3-4 treatment my left leg & hand, started tingling & felt like pins were pricking. Like when your hands are extremely cold & you run water on them. They would twitch as well. I took B6 it helped for a while. Also I'm right handed so I worked around it.. A few times my right side was affected & it was horrible..I couldn't type & using my legs to drive... A mess..but for the most part it was my left side..
By May or June, my memory was horrible.. I would drive by my exit. It felt like cotton was in my brain.. I'm so much better now but there are times I have to concentrate hard & its frustrating....July will be 2 years!! Wow!! What a difference!!!
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Softness, sure looking forward to the next 5 treatments!!!
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Hi Rita and everyone. Just thought I would say hello and send good thoughts for you going through CMF. I started in February 2001 so 14 years ago. Just a word of caution with taking tylenol with CMF, both can be toxic to the liver. So just be careful. Trader Joes now makes Ginger Mints. Just wondering if anyone has tried them. My.hair did get very thin so my sons bought me ball caps for every occasion. One other word of caution. Since your immune system is down think twice about swimming in public pools as chlorine doesn't kill all the bad guys and what most people shrug off you might not. I learned the hard way. Sending hugs to all. SoCal.
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Hi Rita and everyone. Just thought I would say hello and send good thoughts for you going through CMF. I started in February 2001 so 14 years ago. Just a word of caution with taking tylenol with CMF, both can be toxic to the liver. So just be careful. Trader Joes now makes Ginger Mints. Just wondering if anyone has tried them. My.hair did get very thin so my sons bought me ball caps for every occasion. One other word of caution. Since your immune system is down think twice about swimming in public pools as chlorine doesn't kill all the bad guys and what most people shrug off you might not. I learned the hard way. Sending hugs to all. SoCal.
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sent it twice, sorry
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Did ya'll lose your eyelashes and eyebrows from CMF???
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I lost my eye lashes not my eyebrows.
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Sue, I did not lose my eyelashes, but I didn't have to shave my legs for several months! :-) Also, not everyone gets that "metal mouth." I never had any trouble with that at all.
Also, although the chemo is cumulative, I just got more tired as the treatments continued. By the second and third treatment, I had learned how to manage most of the side effects that popped up. I would guess that you will have very few side effects since your first round went so well. I would have them slow down the drip to ward off the headaches and take your nausea meds whether you think you need them or not.
Most of the gals who are working at jobs outside the home are still able to work most of the time so don't worry too much about side effects. Just take it one day at a time and if something does "pop up", handle that and move on. Hugs to you!
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SoCalLisa...always great to see a post from you! With 14 years behind you, you are indeed an inspiration to those who are just making the journey. Stop in more often. I miss you! I am also enjoying your flower photography on FB. Wow! You are good!
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HI all. Finally feeling mostly better from round 1. But, Just to add to my stress, just got letter stating that my pap smear was abnormal and while not the worst case, I should be rechecked very soon. I feel like my body has decided to just " give up" this year. 1st, dental problems like crazy, 5 filings, 2 root canals. Then breast cancer... nowe cervical issue? Ugh! Definitely taking my xanax later.
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Diagnosed at 48 yrs old w/ ILC April 26th, 1995. Mastectomy May 15th,1995; commenced 4 months adjuvant chemo (ACT?) August, 1995, followed by five yrs of Tamoxafin. Enjoyed 13.5 yrs of stability with NED until dxed in 2008 with Bone mets to skull, cervical neck, ribs, hips, knees & feet. Started on bone strengthening Bonefos tablet which was changed to Bondronat and currently still taking today. I have been through the whole gamut of Aromatase Inhibitors until I was dxed w/ Liver mets in September 2013. Consequently, I did 6 months of Abraxane infusions until the Liver mets progressed.
Aromatase Inhibitors caused such a dramatic increase in Arthritis in hips & knees, I had to have right hip replaced last February '15, and am currently booked for left hip on June 12, one month from now.
Depending on Liver scan sometime before hip op, I don't yet know whether current chemo regimen will continue after surgery.
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Sorry about that post ladies, was filling out profile on new tablet, when a box popped up saying I had to fill in the box and somehow it popped up in this topic. I guess I'm turning into the DOL I feared I would become someday:-)
Sheila.
DOL = Dotty Old Lady.
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Thanks Rita...you are doing a great job.
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Best of luck to you Sheila!!!!
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No worries, Sheila. You are fine
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Hi all. Can I ask about the differences in CMF regimens? My mom (IDC/DCIS, stage 2) is due to start hers in about two weeks. She has already had surgery and rads and will have eight chemo treatments once every three weeks over six months.
I see here some people's CMF seems to be more, Idk, intensive - ? - or at least more frequent than the three week/six month span my mom will have. I assume the SEs are also different? She has been assured that her hair might thin but not fall out altogether and she may feel a bit queasy. I'd love to hear from folk who have had the same regimen so I can help her know roughly what to expect.
We're especially concerned about chemo brain because my mom has had a very rough two+ years (her house was severely damaged in a natural disaster in 2012 and she has had a protracted and complicated project trying to rebuild) and I think she's still traumatised and confused by that and her cognition has taken a hit. I'm worried that this building project will really come to a halt and my mom will never get back home.
I post here because she is too afraid to read this forum, even though I often read her the posts I find helpful and reassuring. Her trust in doctors is also suffering so your real-life experiences are really helpful and seem far more valid to my mom than what the docs tell her, so thanks to you all for sharing.
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Amy - I too had an abnormal pap about 3 months after I was diagnosed with breast cancer. While it is certainly not ideal, it is okay for now. I had a colposcopy where they took out some tissue, like a biopsy maybe? It came back as atypical but not due to HPV which they say is good. I have had one follow-up pap since then and no changes. They say come back in 6 months. I talked with my MO because I was freaked out and didn't want to wait until it turned into cancer. He said that this is common protocol and they are monitoring me closely. I had a second opinion with an oncology gynecologist and they have recommended the same thing. If it still comes back the same in 6 months, we will do a LEEP procedure and all will most likely be fine. Try not to worry. Many people on the board say don't worry until you have to and I really try to live by that.
Sue - I did not lose my eyebrows or my lashes, but didn't have to shave legs, armpits or bikini line hardly at all. I had my last treatment in April and still don't have to shave as regularly as before.
Sheila - best of luck to you!
Puncturedbicycle - I am sorry that your mother has to deal with this. I had 8 infusions 3 weeks apart and it wasn't as bad as I thought it would be. I did and still do have a touch of chemo brain, but I find that using reminders helps me a lot. I use the reminders on my phone, sticky notes, and things like that.
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I had CMF 14 years ago. Haven't had to shave under my arms yet ☺
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Sue,
I had CMF for triple negative bc back in 1990. I didn't lose my hair, lashes, or brows. I bought a very fancy human hair wif I had made to match my own hair, but woulnd up never using it and donating it to some other curly haired redhead. I can't say my hair looked fabulous after finishing but I had a big mop of it during. My hairdresser just said cut it off, after I was done so that it would grow back healthier. So I cut off my shoulder length hair to a short cut. I have naturally curly hair and I really think the long curls hid a lot of damage during chemo. The other thing my hairdresser did was give me hot oil treatments after finishing chemo to help restore the moisture in my hair
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punctured,
I had my CMF in my 30's back in 1990 with the same schedule your mom is going to have. The main problem I had during that time was some nausea, ( I never threw up once) and diarrhea, there was also some fatigue that was cumulative. I wound up taking a short nap every afternoon during the last couple of months of chemo, but I was able to work through the entire process. Didn't lose my hair, brows or lashes.
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thanks Mandy - I've calmed down a bit about results. I've left a message for my ob/gyn. Just trying to enjoy this week of feeling normal before next treatment on the 28th.
A
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I took my first driving test in White Plains 1959.
We were living in Chappaqua.
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I am having continuous SE's, it seems. Infusion #2 was on the 7th. I have had the sore tongue, much nausea, been very tired, food aversions, sore throat, UTI, more nausea, body aches and pains, bathroom issues, and more nausea. I did try the Compazine and within an hour was asleep in my chair. I'm thinking that isn't acceptable when you are at work!
Anybody else having trouble with continuous SE's?
The ultimate? I'm really struggling with my normal Starbucks drink!!! Had to throw it away twice last week! Now I just get unsweetened tea. It's way cheaper and much more refreshing!
I've been a little depressed the past couple of days, thinking about dealing with all this for the next two months. I'm pretty upbeat most of the time, and I know it could be so much worse, but I'm just so overwhelmed right now...
Laura
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So sorry to hear that Laura..yes, half way through, I started feeling the side effects most of the time. It was a good thing
I didn't work. I don't think I could have. Part of my problem was from the neupogen shots and its effects..but most from CMF.
I know everyone is different. Some have smaller reactions. I kept telling myself I could see the end of the chemo. Holding your hand.
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