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CMF Question

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Comments

  • SCMartin
    SCMartin Member Posts: 112
    edited September 2006

    Sue, I get Aloxi in the IV before they start the chemo drugs. I have Kytril to take at home. One pill every 12 hours as needed. So far they have worked well (knock on wood) as I had my fourth treatment this morning. I use all the Nioxin products as well and they seem to help. Have a great week-end. Susan

  • candie1971
    candie1971 Member Posts: 2,467
    edited September 2006
    Sue and Susan,
    I just got the Nioxin products. I also continue to lose hair..shedding everywhere. But thank goodness I have thick hair and a friend who keeps trimming it once a week cause the ends get funky looking every 5 or 6 days.
    Sue, I use compazine but it doesnt work very well. I also have Zofran but I wont take that cause onc says that is immediate constipation and I had that in the beginning and I just cant deal with that.

    Susan, hope your tx went well and you were a good girl--lol. Being bitchy is ok with all we are dealing with. I am so glad you are half way through. I have 8 more to go and dread the next one!!

    Well, have a good weekend girls. We will have a wet one this weekend thanks to Ernesto. I was so hoping for lots of sun so I could go to the Jersey shore since I am off treatmeant this weekend. Oh well!!

    Candie
  • SCMartin
    SCMartin Member Posts: 112
    edited September 2006

    Good Morning all.I hope everyone is well this week-end. I had #4 on Friday and am doing fine. I feel like I'm jinxing myself saying that. The biggest issue for me is the fluid tolerance. I still cannot look at water or even think of it so I am just drinking tea, gingerale, cranberry juice, etc. I truly may never drink water again and I cannot do ice chips during the 5FU so I did sherbert. Other than that- I am ok and just want the next 4 done!!

  • SCMartin
    SCMartin Member Posts: 112
    edited September 2006

    I wasn't done! Candie, I am glad you got the Nioxin treatments- I really hope they help.How is the heartburn issue? Are you having problems with nausea? Maybe they can switch you to Kytril which most women like. When is your next treatment? Keep in touch and I hope you are OK and enjoying the week-end. Hugs- Susan

  • b445
    b445 Member Posts: 980
    edited September 2006
    it's ok if you don't drink water as long as you get plenty of fluids, without caffine! Just keep drinking!

    Glad things are going well, I'm praying they stay that way.
    Hugs & Prayers
  • d23
    d23 Member Posts: 20
    edited September 2006

    I just started CMF yesterday and am looking for the nioxin products. I'm overwhelmed by how many of them there are. Can the nioxin ladies tell me which specific bottles they got? My hair is thick and chemically treated. Also - could you get it at a neighborhood pharmacy or did you have to order it from somewhere? THanks so much!

  • d23
    d23 Member Posts: 20
    edited September 2006
    I know this has been anwered before but I don't have time to look right now. I'm doing okay after yesterday's infusion but feeling the slightest bit icky. I have zofran prn but I'm not sure if I should use it yet. Should I take the "nip everything in the bud" approach and take it or the "be careful about taking too much too soon" approach and hold off? My memory for what I've read is that people suggest taking the meds before you need them but I want to make sure. I had a hell of a time treating constipation when I was on pain meds post surgery.

    Thanks! It means so much to have you guys to talk to, even though I'm sorry you'r in the same club as I.
  • straykat
    straykat Member Posts: 26
    edited September 2006
    Hi!

    Take the meds! Why wait until you 'need them'? At the same time take a mild vegetable-based laxative (I can never remember the name of it - it's OTC, starts with 'S' and is highly recommended by others) to prevent constipation. Take it for a few days at each infusion.

    Hope you're feeling well and that the ickiness goes away!

    Mimi
  • kats
    kats Member Posts: 162
    edited September 2006
    Definately take the meds.

    As for the constipation issue the anti-nausea med given before chemo and the anti-nausea meds used at home can lead to constipation.

    After two bouts of constipation while doing CMF I received this wonderful advice from someone on the board here: take a stool softener for a few days before chemo tx and for a few days after. Plus if you are taking an at home anti-nasuea med take a stool softener right along with it. That worked for me and the constipation issues I was having were resolved.

    The stool softener I used was Colace and I also used the wal-mart Equate brand that was comparable to the Colace. I found no difference in the effectiveness of either. Neither of these caused diarrhea, whewwww.....they just made having a bm easier.

    Best Wishes,
    kats
  • c2et
    c2et Member Posts: 15
    edited September 2006
    Dear d23:
    Kats and Mimi are right. Please take the meds!!!
    I also used Nioxin for my hair. They have a website www.nioxin.com. There is a store locator on their site showing where it's sold.
    My best to all on CMF.
  • SCMartin
    SCMartin Member Posts: 112
    edited September 2006
    Dear d23, I had my fourth of 8 CMF last Friday. I always used metamucil anyway so I just continued with that and have not had a problem with constipation. I get Aloxi in the IV before my 3 IV chemo drugs and I take Kytril for a couple of days at home. I've had some nausea but sometimes it's more of an association thing- like I can't tolerate water- drinking it, seeing it or thinking of it. I know, wierd, huh? You can find the Nioxin products in many of the chain type salons that carry so many products like Best Cuts and others. I use the cleanser which is the shampoo and then the scalp treatment and then Nioxin foam which I put in my hair after drying it. So far, so good. I had my hair colored once last month and will have it colored again next week. I just do spot coloring like my sides, crown and back. You will do fine. E-mail me if you have any questions. Susan scmknicks@aol.com
  • d23
    d23 Member Posts: 20
    edited September 2006
    Thanks so much, guys! I was leaning toward taking the meds anyway, but you certainly confirmed me in my decision. I took the zofran and the colace and am eating lots of dried fruit. And as it turns out, Nioxin is sold at a place 2 blocks away from me.

    Susan - what kind of haircolor do you use? Do you go to a salon or buy it yourself?

    BTW, I just got a notice that they're adding a nutrition section to this website. I think that's great.
    Thanks
    Mindy (aka d23)
  • SCMartin
    SCMartin Member Posts: 112
    edited September 2006

    Mindy, Glad you found the Nioxin products. I use them every day. I get my hair colored at a salon. Like I said, just spot coloring to get me through for a month. I'll wait to highlight again until after I'm done with chemo at the end of October. Hope the meds work well for you. Susan

  • Sue227
    Sue227 Member Posts: 45
    edited September 2006
    Susan,
    I'm glad to hear someone else is continuing to color their hair. I had my roots done right before my last treatment. I worried about doing it but could find nothing about it except things saying don't do it because your hair is fragile. As I said before I'm shedding but it isn't noticeable to anyone so I went for it. I'm glad I did, feeling good about the way we look is so much a part of everything. I think I can make it until October when I will be finished and then I will go back to the highlights, etc.

    Mindy,
    I also get my hair done at a salon and I use the Nioxin #8 for coarse hair, chemically treated, visibly thinning and it works pretty good I think. All of the Nioxin products are available at Ulta also. As everyone else said, take the meds, there is no need to feel bad.

    Hope everyone is doing well. I have one more week until the next one on the 15th, then only 1 more to go!
    Sue
  • d23
    d23 Member Posts: 20
    edited September 2006
    New question - It's day 2 and I still don't have mouth sores. How many days should I be taking the Biotene mouthwash? I hate the taste and would love to stop when I'm out of the woods.

    Thanks.

    Mindy
  • Sue227
    Sue227 Member Posts: 45
    edited September 2006
    Mindy,
    You may not get mouth sores or they may be so slight that they don't really bother you. Try just using the Biotene toothpaste if you get them. I get a slight case about a week later but they don't really bother me at all as long as I stay away from spicy or really hot temp food. Also, mine didn't start until the 2nd treatment. Good luck.
    Sue
  • candie1971
    candie1971 Member Posts: 2,467
    edited September 2006
    Hi Susan
    I eat an ice pop during 5FU infusion. Kytril made me constipated for 5 days so onc is using a different nausea med in IV. I have compazine to take but I am so nervous about the constipation that I just suffer with the nausea. Onc told me to take pepcid AC and it is working just fine. My next tx (#5) is next wed sept 13 and I dread it!!!, especially caue I feel so good this week. My hair continues to shed everyday. Thank God I have very thick hair cause it is still not noticeable.How are you doing?

    Minday I use both Biotene toothpaste and mouthwash. I like it.

    Hugs and prayers,
    Candie
  • b445
    b445 Member Posts: 980
    edited September 2006
    I used the Bitene toothpaste everyday and the wash once a week and had no sores.

    As far as your hair goes, do what every makes you feel good. I had a perm put in mine about two months into treatment and did fine. Yes I have had a lot of thinning. It's at least half as thick as it was before I started. I'm 4 month post chemo and still thinning. I finnally went and cut it short. It took what was left of the perm off but low and behold my hair still has curl it never had before.

    I say we should do what ever it takes to make ourselves feel good about ourselves.

    By the way lots of fruit will help with the constipation. I found pineapples or tyhe juice was easiest for me.
  • SCMartin
    SCMartin Member Posts: 112
    edited September 2006

    Hello Candie, Cheryl, Sue and Mindy. I'm glad to read everyone is hanging in there. I will have #5 on the 18th so I have a week off. I so agree. We have to do whatever it takes to look and feel normal which is why I will run not walk to the salon on Tuesday. I hate the grey!! I also use the Biotene toothpaste and mouthwash even if just to prevent the sores.Mindy, you may never get them. Candie, I will try the popsicles next time becaust I can't do the ice thing. I'm so glad the heartburn resolved with the Pepcid. I was a bit more nauseated last time also because I don't like taking the Kytril. It's tolerable so I'll just grin and bear it for now. Does anyone else feel like time is going slower then normal because we want it to go fast? I will be excited to see Christmas things in the stores in Sept. this year. Take care everyone and hugs to all. Susan

  • straykat
    straykat Member Posts: 26
    edited September 2006
    As scmartin and others have said, hang in there. Someday soon you'll look back and wonder, "What was that all about? It only lasted --- weeks (fill in the blanks) out of the --- weeks so far in my life." I was 65 when this began: 65x52=3,380 weeks. This is doable! Twenty-four weeks out of 3,380!

    We're lumped into this little CMF group but it surprised me how many variations of CMF there are. I was given two options: CMF by infusion only, either once every two weeks or once every three weeks, for a total of six infusions.

    At the time, I thought that once every three weeks would be better, that I'd have a longer period of time to recover before the next one, so that's what I opted for. In retrospect, I should have gone for once every two weeks. It would have shortened the length of treatment and since it wasn't too awful, I could have handled it.

    One question I can never remember to ask at the onc's office: I've heard (but I'm not sure if it's true) that A/C can be given for only one course of treatment in a lifetime. Is this true of CMF? If there's a recurrence after CMF, can you be given A/C? Anyone know what the options are?

    In my case, I'm not eligible for the hormone treatments (Taxol, Taxotere, Herceptin, et al) so after chemo and rads, there wasn't any further treatment. For this I'm grateful! So after CMF and no possibility of the other meds prescribed, what's available for we CMF'ers if recurrence happens?

    Mimi
  • candie1971
    candie1971 Member Posts: 2,467
    edited September 2006
    Mimi,
    My onc also told me about A/C being given once ina lifetime. Yes, A/C can be given if there is a recurrence to one who has done CMF. Don't know about doing CMF again,tho. I will ask my onc that question.

    Good luck to you

    Higs and prayers,
    Candie
  • d23
    d23 Member Posts: 20
    edited September 2006
    That was my impression too - that ACT could be given only once. The one thing is both ACT and CMF both contain cytoxan, so I wasn't sure if the cytoxan could be given more than once.

    BTW, It's day 6, and I'm doing better. Sometimes, though, I can't tell if what I have is nausea, heartburn or constipation. Anyone else have that problem?

    Oh, and no mouth sores yet! I hate mouth sores.

    And I got the Nioxin. Thanks for all the tips.
    Mindy
  • SCMartin
    SCMartin Member Posts: 112
    edited September 2006

    Mindy, Try not to worry about the mouth sores. Keep using frozen products during the 5-FU and you will be fine. If you do develope one they will give you a script for Magic Mouthwash and that will take care of them. I know what you mean about how you feel. It's like you don't feel yourself but you can't put your finger on it. I have had 4 treatments and I still keep waiting for the other shoe to drop. It hasn't. I have traveled twice during chemo and have many of trips planned during the remaining four. My sister went through CMF and reminds me all the time that I will be fine and many side effects will not happen. We'll all support each other on this board. Susan

  • RaeMN
    RaeMN Member Posts: 36
    edited September 2006
    Wow, I have been gone a long, long time from the board....I am so sorry but the summer has come and gone so fast.
    I have been busy trying to keep up with all the new people on board. You are all in my prayers and hope every one is keeping a smile on their face (it is hard, but there is an end).
    For those who don't know me and for those of you who do, I can't believe it has been almost one year since my diagnosis of BC. I have had a lumpectomy (1.5 cm, clear margins, no lymph node involvement), chemo (CMF) and my six weeks of radiation is now over. There is an end in sight for all of you going through treatment. It sucks.....
    I made it through with all of the help and info from all of the wonderful people on this site. All you CMF gals, keep asking your questions. The end of the treatment does come.
    FYI: I used biotene toothpaste and mouthwash ALL OF THE TIME and still do. It is expensive but I didn't have any sores from the chemo and that in itself was worth the price. Senecot for constipation (right Kats?) and chew on ice during the IV drips. It really helps with sores too.
    It was a long,long journey but I made it and you all will too. I will try and get on more and check on everyone.
    Good luck to all of you and try to keep a smile.

    RaeMN
    (1.5 cm, ILC, clear margins, Lumpectomy, 6 chemo (CMF), 6 weeks of radiation, now on tamoxifen for 1-2 years.
  • SCMartin
    SCMartin Member Posts: 112
    edited September 2006

    Rae, Thanks for the words of encouragement to all of us and congrats on the almost one year date. You know exactly what all of us are going through. I have 4 CMF treatments left and then 33 rads. I can't believe I have already done four as I thought I wouldn't make it this far. I had a lumpectomy for a 2.2cm, node negative, clean margins and will follow rads with Arimidex. I am grateful that CMF was an option for me. I have them every 2 weeks all IV. Thanks again from us for the support and thoughts. Susan

  • b445
    b445 Member Posts: 980
    edited September 2006
    I also heard that if us CMF gals do have a reocurrance, we can awalys do the AC. But the AC gals can't redo it!

    OK you gals have been on CMF for a while now. Please watch for signs of unusal coughing that persists and tarry stools. Signs I wasn't fully aware to watch for. If you have either please talk with your Doc about them. They are signs of serious side afects. These didn't show up in me until almost the end. I wound up with pneumoina & blood clots. After reading the materail on CMF again, after the fact these were symptoms they said to watch for, but that usually don't affect most people. Just want you to be aware and not go through what I did.
    I'm glad to hear that you are all doing well and I will continue to pray it stays that way
    hugs & prayers
  • candie1971
    candie1971 Member Posts: 2,467
    edited September 2006
    Rae, Congrats on getting through and thanks for you encouragement. It is because of people like you and those going thru it now that I can thru this.

    Mindy, The chemo nurse gives me an icepop during the 5FU infusion and I have been ok so far-no mouth sores--I do use the Biotene products just in case. I had heartburn for awhile but since I have using PepcidAC it is gone.

    Cheryl, thanks for your warnings on the blood clots and pneumonia.

    Susan, I am glad you are able to travel while on treatment. Great for you!!!

    Well, girls I developed another side effect. I took off my nailpolish this morning and found three nails discoloring. I read that can happen--anyone have it happen to them? I go for treatment 5 tomorrow--yuck,yuck,yuck---how I dread it!! I kept polish off one nail to show onc tomorrow.

    Well, let me know if any of you had the nail thing.

    Hugs and prayers and thanks!!

    Candie
  • RaeMN
    RaeMN Member Posts: 36
    edited September 2006
    Candie, I too had the nail problem. Remember to use the non-acetone remover. Also another tip my oncologist gave me. Soak your nails in Knox Gelatin. I did it every other day from treatment 2 on and it seemed to help. I would just keep the mixture in the frig, and then reheat it in the microwave until liquidy. Plus, it makes them smooth and keeps them growing (even though a little). My oncologist is a young doctor so I was surprised by this suggestion. I know my mother (89 years old) swears by this and her nails always seem to be strong and healthy looking. My doctor says "sometimes the old remedies are the best".

    Hugs to all of my CMF friends. Good luck.

    Rae
  • candie1971
    candie1971 Member Posts: 2,467
    edited September 2006
    Rae,
    Thanks for your quick response. Will I lose my nails? Or do they just turn black? I will do the knox thing.

    Hugs and prayers,
    Candie
  • candie1971
    candie1971 Member Posts: 2,467
    edited September 2006
    Just a note-- I have beautiful strong nails!! I do them myself and are always perfect. I hope this chemo doesn't ruin them forever!!!

    Candie

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