Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

CMF Question

Options
12467282

Comments

  • JeanLouise
    JeanLouise Member Posts: 9
    edited May 2006
    Options

    I am waiting for my Oncotype DX test results to help me decide if I will take chemo or not. I'm trying to do chemo research ahead of time in case I have to make the decision. I was wondering if there are any good references about why one chemo regimen is chosen over another one. My onc said that if I have chemo he will recommend A/C and after reading this thread it seems that CMF would be alot easier on me. I'm also looking for information about the risk of serious side effects from the various drugs. I'm not looking for phrases like "slight risk", I want some concrete percentages. Does anyone have a a link with those types of info? Thanks. I am stage I, 0.8 cm, ER/PR+, age 46.

  • Marcia320
    Marcia320 Member Posts: 22
    edited May 2006
    Options
    I'm not sure if this is what you are looking for but I founc this profiler to be very helpful in my decision making. My onc gave me the option of chemo or not and then A/C or CMF. Are you node neg?
    http://asbointl.org/asbo/files/ccPageContent/DOCFILENAME/000000010181/SBA_Jan05_Final.pdf
  • c2et
    c2et Member Posts: 15
    edited May 2006
    Options
    Dear JeanLouise:

    There's a website called www.chemocare.com which describes chemotherapy drugs, side effects, risks, etc. that I found to be very helpful.

    I also did the Oncotype test which will provide more information to help you to make a decision. Like Marcia, I was offered either AC or CMF.

    All the best to you.
  • JeanLouise
    JeanLouise Member Posts: 9
    edited May 2006
    Options
    Thanks, Marcia and glyn for the links. I couldn't get the first one (profiler) to load; I will try it again later. I had already looked at the chemocare one and didn't see any percentages for risks. Let me explain where I'm coming from: Let's say I get a 3% reduction in risk of recurrence if I take chemo, but a 2% chance of a serious side effect such as heart damage or leukemia if I take it. Well then, I'll probably say no. I really hope to have some concrete numbers ahead of time so that I can chew on them. Right now I am 6.5 weeks out of surgery and still no Oncotype DX results... yet my rad oncologist wants to start rads within 8 wks out of surgery, if I'm not getting chemo. So I'm worried that I will have little time to make a decision and maybe not enough time to get a 2nd opinion, if I decide I want to get one.
    Yes, I am node negative, and also HER2 negative.
  • fem31313
    fem31313 Member Posts: 5
    edited May 2006
    Options

    Hello Ladies, I will be starting CMF (all IV)next friday. I had me "Education" last week and here is a question that came up later: What are the steroids for that they said I would get???

  • Chelee
    Chelee Member Posts: 36
    edited May 2006
    Options
    The way I understand it is....the steroids help prevent any and all reactions that you can get from these chemo drugs. They help protect the lungs and such. You usually only take them the day BEFORE chemo, day of, and day after...thats it. Not too bad other then they make you feel kind of wired. Hard to sleep.

    Chelee
  • straykat
    straykat Member Posts: 26
    edited May 2006
    Options

    My steroids were included with the infusions I got on chemo day - nothing before or after other than Ativan and Compezine, which are for totally different things.

  • fd411
    fd411 Member Posts: 9
    edited May 2006
    Options
    Elke,

    I have to take decadron the day before, the day of and the day after my infusions. I also have to take more right before the infusion. I'm on a different regimen, but I take them to counteract the effect the drugs.

    A really good site which goes into detail about all of the chemo drugs and describes the acronyms is www.chemocare.com. Have you checked this site out? It's got Lance Armstrong on it.

    Ferne
  • fem31313
    fem31313 Member Posts: 5
    edited May 2006
    Options
    Thanks Ladies !!!
  • fd411
    fd411 Member Posts: 9
    edited May 2006
    Options
    Correction. The site has Scott Hamilton on it. Oops...

    ferne
  • straykat
    straykat Member Posts: 26
    edited June 2006
    Options

    Bump.

  • straykat
    straykat Member Posts: 26
    edited June 2006
    Options
    Bump for fem31313.
  • fem31313
    fem31313 Member Posts: 5
    edited June 2006
    Options

    Thanks Stray !

  • nosurrender
    nosurrender Member Posts: 737
    edited June 2006
    Options
    Hi- about the steroids...
    they also are powerful anti-inflammatories. And when your GI tract gets inflammed from the chemo, the steroids are there to protect you!
    now there is a twist here- while they are keeping you from getting sick --- you really need to have something in your tummy when you take them so you don't feel sick from the pill itself! (I know it is nuts)

    Take your decadron with a piece of bread and you will be fine.

    STEROIDS REALLY HELP WITH NAUSEA!

    Good luck!
  • b445
    b445 Member Posts: 980
    edited June 2006
    Options
    Wow, Where was this thread when I was going through CMF. I asked about it but no one else seemed to be doing CMF.
    I'm a triple negative. I had a lumpectomy in Nov. & started weekly CMF in Dec. I took the pill Cytoxen and had the rest in IV form along with Decradon. It's helps keep your body from rejecting the chemo, kinda like taking allergy meds! I took the compazine daily to make sure I din't get nausa. only happened a couple of times. didn't drink enough on those days! Very important to drink lots & keep exercising!
    I worked full time for the first 3 and half months then went to 38 hours for the rest of the time.
    I have really thick hair so most people never noticed my hair loss. (Had i been my husuband I would be bald!) but now I can get my hair into a rubber band, where I couldn't before. I slao had a perm while in my third month of chemo. No problems! and my hair doesn't perm easy!

    By month 5 I was really tired all the time. I had 21 out of 24 treatments. They stopped my treatment because the Metho, what ever it is, caused me to have double pneumonia & pulmonary embolisims.

    All in all I'd have to say that doing CMF seems to be much easier on the body than those who do A/C.

    I start radiation tomorrow.
    Wish everyone the best in their healing process.
  • straykat
    straykat Member Posts: 26
    edited July 2006
    Options
    Bump for Candie1971.
  • straykat
    straykat Member Posts: 26
    edited July 2006
    Options

    Bump again for Candie1971.

  • candie1971
    candie1971 Member Posts: 2,467
    edited July 2006
    Options

    bump

  • SCMartin
    SCMartin Member Posts: 112
    edited August 2006
    Options

    Ladies, I just completed #2 of 8 CMF treatments. Mostly I have a headache and my ears feel full like on a plane. I will be going every two weeks for all IV CMF. How much worse will this get as I go down the road? I am having a hard time taking this one step at a time- I keep thinking how bad will I feel in October. I did great with #1 but I keep waiting for the other shoe to drop. Any info would help. Thanks so much

  • socallisa
    socallisa Member Posts: 10,184
    edited August 2006
    Options
    I did six months of CMF..and you are right it is a long road...I had trouble with the white blood count and had to get the shots for that. Please remember to drink all the water they tell you to. I think I went thru a gallon a day while I was taking the cytoxan pills for the two weeks every cycle. I also felt more tired with each treatment. Oh the other hand, my friend who went thru the same thing had very few problems..You said it..try think one day at a time...this is doable..
    Hugs, Lisa
  • Sue227
    Sue227 Member Posts: 45
    edited August 2006
    Options
    I just had my 3rd of 6 CMF treatments. So far each time has been a little different. They symptoms should subside by the end of day 3. The headache can be better tell them about it and they can slow down the cytoxan. Also, take tylenol before you start each treatment. It is a long road but doable. Read all of the posts on CMF they are very helpful. You're not in this alone. Hang in there.
    Sue
  • candie1971
    candie1971 Member Posts: 2,467
    edited August 2006
    Options
    scmartin--i have finished #2 tx of 12 --on 2 week break--i feel good now--i know hwat u mean --i wonder how i will feel in a month or two also--i had bad constipation from nauseau meds so i go without and suffer thru the nauseau--lemon candys help and cheezits,too. my head gets foggy at times and i am worth nothing on weekends aafter tx

    good lick to you--keep in touch

    hugs and prayers,
    Candie
  • straykat
    straykat Member Posts: 26
    edited August 2006
    Options
    Candie, rather than stop the nausea meds in order to prevent constipation, why not take something for the constipation? A lot of the women here recommed an over-the-counter natural vegetable laxative - sorry, can't remember the name, but it starts with 'S.' An sure someone will be along who can supply the name.

    I started taking it the night before my second and subsequent chemos and took it for 3-4 days after. It worked as promised and I didn't have constipation again.

    It's not a laxative that you can get hooked on, so no problems there. Seems like a better alternative than nausea.

    Best of luck to you!
  • nosurrender
    nosurrender Member Posts: 737
    edited August 2006
    Options
    AS the girls said, the headache can be controlled if they slow the cytoxan to a very slow drip. But you should know that sometimes the decadron can give you a headache too. So try to take tylenol on a regular schedule those first two days if you can.

    The constipation is always an issue and can make nausea worse!

    Start taking Colace, a stool softener the night before. Take it every day of the those first three days. Also take Senekot. The colace softens the stool and the senekot gently makes you have the urge to go.

    Make sure you drink plenty of fluids. And if you can walk around a bit that may help too.

    I would mention to your doctor if your ear fullness gets worse. If you start to have ringing in your ears or get dizzy then you might need to lower your sodium intake because sometimes Cytoxan can upset the inner ear fluid balance and a high sodium diet makes it worse.

    There will be a cumulative effect of the CMF. You will get more tired. That really is a given with all chemos. But just because you feel bad this time doesn't mean everytime will be bad or WORSE. In a weird way we actually get used to alot of the stuff you are feeling. I know it is sick! But true. Our bodies are resilient and find ways to compensate for what we have to endure. Plus, over time you will learn your own coping tricks to get through it better.

    I wish you all the best. Hang in there... it is NOT forever, even if it does feel like that now!!!
  • nosurrender
    nosurrender Member Posts: 737
    edited August 2006
    Options
    For constipation-
    This is from CURE Magazine's Summer Issue-
    It has good tips that apply to chemo as well as pain med induced constipation:


    Question: How do you treat constipation caused by pain-relieving
    opioid use?

    Answer: Opioids are commonly used to treat cancer-related pain, which is experienced by nearly 90 percent of patients. These drugs, which include morphine, hydrocodone (Vicodin®, Lortab®) and oxycodone (Percocet®, OxyContin®), bind to receptors in the brain and spinal cord to bring relief. But they also bind to receptors in the gut, which can lead to constipation in about half of patients.

    While the human body can adjust to many opioid-induced side effects, such as nausea, the body never becomes tolerant to the constipating effects of the opioids. Opioids disrupt the normal contractions of the bowel, resulting in stool staying in the body longer and becoming harder and dryer as the body absorbs water out of the stool.

    Because constipation can be reliably predicted when using opioids on a continuous basis, a bowel regimen should start at the same time as opioid use. Typically, two medications are given: a stimulant, such as Senokot® (senna), which increases the contractions of the bowel, and a stool softener, such as Colace® (docusate), a pill that breaks up the fat content in stool so water can more effectively penetrate it. If constipation remains despite these medications at reasonable doses, lactulose is often added. Lactulose works by using the physical property of osmosis to pull water into the intestines. The goal of these interventions is to keep the intestines contracting and to soften the stool.

    If constipation is present before starting opioids, there may be an impaction or a dam caused by hard, dry stool. In this case, rectal interventions, such as enemas and suppositories like Dulcolax® (bisacodyl), are often needed in conjunction with the above oral medications to break the dam.

    The goal would be to specifically reverse the negative effects of the opioids on the intestines without reversing the beneficial effects on pain, and the good news is that new agents, such as methylnaltrexone, are doing exactly that. Methylnaltrexone is a novel drug in development that can’t cross the barrier that separates the brain and the spinal cord from the rest of the body. Its unique chemical structure allows the drug to knock the opioids off the intestines without affecting the pain control in the central nervous system. A recent study looked at patients with advanced medical illness who had opioid-induced constipation. About 60 percent of the patients who received methylnaltrexone had a bowel movement within about one hour. The average time to a bowel movement for patients taking a placebo was more than 24 hours. Although some patients experienced nausea and dizziness, no patient had signs of increased pain or opioid withdrawal.

    Studies with oral forms of methylnaltrexone and a similar agent called Entereg® (alvimopan) are under way. Thus, together with current medications, these new agents may help doctors not only treat but prevent opioid-induced constipation in cancer patients and prevent the immense suffering that is associated with it.

    —Jay Thomas, MD, PhD, is an associate clinical professor of medicine in the Cancer Symptom Control Program at the University of California, San Diego
  • 2up
    2up Member Posts: 944
    edited August 2006
    Options
    i had wicked ear/sinus issues with my first transfusion, and a headache that i swore was brain mets........the very wise ladies on this site immediately told me to get my next drip slowed down to no less than 45 mins to an hour........what a difference!

    as far as nausea, i did ok with kytril and colace.......but no matter what i did over all 8 tx's i still had ridiculous motion sickness in a car if i was the passenger.

    you're gonna get through this..........go one day at a time.
  • b445
    b445 Member Posts: 980
    edited August 2006
    Options

    you might also try pineapple juice or fruit, apricots will also help. I like pinapple, it works fast and gentle for me and it's natural. I had 21 weekly CMF treatments. They also slowed my infusion to help with headaches.

  • fem31313
    fem31313 Member Posts: 5
    edited August 2006
    Options
    I just finished #4 of 8 today (Halfway there Woohoo). I had Trush after the 2nd one, feel more tired since the blood isn't all that great. Lucky me it bounced back in time for the next one. I ask the doc and he told me this is about as bad as it gets since your body kinda gets "used" to it. I go with that answer since everything he said did or didn't happen. I am very lucky in the nausea department. So far I don't get any of it. Don't even take meds other than what I get in the IV. Hang in there it will be over before you know it !!! And don't suffer with anything, call the doc. Even though I have issues with my doc on that end. He seems to be more worried what the insurance says then how I am feeling. I almost had to MAKE him write me a Rx for Nexium, because acid reflux is just horrible and I know its the Chemo. But I always have my regular doc in my corner, she doesn't make a fuss about giving meds that help.
    Sorry that was a complain session.
    Take care and take Baby Steps, you can't predict how you are going to feel anyway.
  • SCMartin
    SCMartin Member Posts: 112
    edited August 2006
    Options

    Thank-you everyone for your support and answers!! I woke up this morning feeling better than yesterday. I guess for me the day of chemo will be tough. The ear and head fullness went away during the night. I took a Kytril at 4 and an Ativan at 9. I slept quite well. Today I go in for the second Neulasta shot- ugh, more bone pain but my WBC are good. I am determined to stay on this every other week schedule.My husband and I have some trips planned for Sept. and Oct. and it's hard to plan when I don't know how I will feel. My 35th high school reunion om Long Island is October 7th. I was really looking forward to this as it's our first one but I don't know how I will look or feel. I hope you are right, that maybe the body gets acclamated to this and it won't get much worse. When does the hair start to thin? I have been using all the Nioxin products every day in hopes that it will help. Thank-you ladies so much for answers. I feel blessed to have you there for support. Love and good health to all of you. Susan

  • fem31313
    fem31313 Member Posts: 5
    edited August 2006
    Options
    My hair started to fall after the 3rd, at least to the point where I noticed. Its still falling, but (knock on the wooden head) I don't have bald spots, just all over thin. Didn't have thick hair to begin with, but everyone says they can't tell.
    Glad you are feeling better. Lucky you ! You got to sleep, I haven't slept yet and it 12 noon on tuesday. I feel ok, but can't sleep.