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CMF Question

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  • dash
    dash Member Posts: 173
    edited November 2006
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    Wow, lot of acid reflux last night and stomach discomfort. I had a terrrible sleepless night, though I took melatonin and my calcium beforehand. I felt wired(third night this feeling)--and that is unusual for me. I wonder if the sleeplesness is from the IV steroid they gave me last week? It's difficult not to blame everything on cmf since I felt and slept great before I started this. How do you ever tell if you are plain sick-lol? And do they need to give me the steroid? I'm keeping in mind the long term benefits of this stuff and don't mean to complain but am really just trying to find out what is normal, fixable or not etc...
    Thanks as always!
  • SCMartin
    SCMartin Member Posts: 112
    edited November 2006
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    Bayore, I was one that refused the steroids. I did not want the additional side effects from steroids. They are given to keep the side effects of the chemo to be less but they have their own effects. My doctor was fine with me not taking the steroids. I got a shot of Neulasta after each treatment that kept my white cell count up the whole time so I kept on schedule with all 8 treatments. But, I got all three drugs IV and did not have the pill form of CMF. You could ask about the steroids and see what they say. I was given an anti nausea drug , Aloxi,thru the IV before the drip of Cytoxan and the IV push of the Methotrexate and 5-FU. Everyone is different but you will find what works best for you. Maybe you can skip the steroids? Ask the oncologist lots of questions. I so hope you feel better and maybe get something to help you sleep thru this. Susan

  • survivor98
    survivor98 Member Posts: 3
    edited November 2006
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    Holly, I didn't have ANY steroids and I used Cytoxan pills, like you. My Day 1 and Day 8 routine was simple and quick. I had my blood counts checked when I first arrived at the center. My actual treatment consisted of one Kytril pill prior to the IV push of Methotrexate and 5FU. They did a brief saline flush, removed the tiny butterfly needle and I was on my way. I was seldom there more than 45 minutes total. The actual infusion took less than 20 minutes.

    Steroids were never mentioned for me... I've taken Decadron on other occasions prior to scans using contrast (I'm allergic to contrast dyes) and hated the feeling. I am fairly certain I'd have asked to try my CMF without them.

    I know everyone reacts to these drugs differently, but I think sometimes the 'cure' is worse than the 'disease'... Meaning the treatment they give to try and ward off chemo side effects causes another whole set of problems. If it were me, I think I'd be inclined to ask for the next infusion to be done without steroids and see if it's better. You can always go back to using them if it doesn't work, ya know?

    I didn't have any problems with constipation or sleeplessness and experienced next to nothing for nausea. Once in a while I'd feel a little 'queasy', but that's all. All I ever took for nausea meds were the single Kytril pill at infusion time and one daily Compazine on days I took Cytoxan.

    If what you're taking now for nausea doesn't seem to be helping a lot, ask for another. There are a slew of different meds you can take. They can all cause a bunch of problems, too, like constipation.

    I was more fatigued as time went on, but I was able to function fairly normally through it all. I just slept more. All in all, my CMF experience was good. I'd do it again in a heartbeat if necessary.

    I hope you are able to get some relief.

    {{{{{HUGS}}}}}
  • dash
    dash Member Posts: 173
    edited November 2006
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    Thank you Susan--I'm glad to know you were able to skip the steroids. That's something I never would think to ask about without these boards! I have a load of Qs for tomorrow when I see the onc before infsuion number 2.

  • candie1971
    candie1971 Member Posts: 2,467
    edited November 2006
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    Hi
    Holly, I do have my good days but the 14 days on treatment are all down--but Decemebr I am done and that is such a GOOD thing...then on to rads. Yes, Holly, make plans and live life as normally as you can--that's being positive and it helps to be that way!!!

    Hugs and prayers,
    Candie
  • socallisa
    socallisa Member Posts: 10,184
    edited November 2006
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    I never had the steroids either..

  • b445
    b445 Member Posts: 980
    edited December 2006
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    I had the steroids but I also take ambien to help me sleep!

  • dash
    dash Member Posts: 173
    edited December 2006
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    My second infusion went very well--I gave my onc my diary of aiments and he said I pretty much experienced every side effect I could have--lucky me--!
    So he spent quite a while with me discussing changing various drugs(chemo drugs stay the same) but he insists I need to stay on some amount of steroids. Due to a long history of stomach conditions I am "high risk" for chemo nausea/vomiting. He said by all rights the full amount of steroids and other drugs he gave me last time should have kept the nausea at bay but it didn't(not a bit!) and that worried him(and me-blech). But he thinks from some of my side effects(heart racing,shortness of breath, wired feeling, sleeplessness, face skin peeling, severe sunburn feeling on arms, face and chest)that I am very sensitive to steroid drugs so he lowered the doseage by 60%. He also gave me an infusion of liquid tagament for the severe heartburn and reflux and a script for nexium. And he gave me Emend and Aloxi for nausea. They said they saw right away from how I looked that I had had a bad time of it. They took me seriously and boy does that make a difference! So anyhow, with these changes I notice a big improvement. I still have an 'off' stomach, weird taste, tired, spacey, but now THIS is doable!
    Last week, I really was feeling terrible not only with the side effects but because I kept questioning myself--I felt like a wimp even though I know I am not. I am just so glad I kept a symptom diary because once he saw that he knew he had to make a bunch of adjustments for me and it has made a world of difference so far. Thank you for all your comments because it showed me clearly that something was very wrong.
  • SCMartin
    SCMartin Member Posts: 112
    edited December 2006
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    Bayyore, I am so glad you had an easier time for #2. I think the lower dose of steroids will make a difference in hoe you feel. Also, the Nexium really helps with heartburn. I had some face peeling also but it went away after the chemo was done. It was pretty mild. I'm sure some of the wierd feeling was from the steroids and part of that feeling is from the chemo. I'm so glad he made those positive changes for you. Believe me, you are not a wimp. None of us that have gone trough all these BC treatments are wimps. We're the strongest people I know. Stay well, Susan

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2006
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    Bayyore, I have found (after 5 months of tratment so far) that each time is unique to itself. some treatments I was ok...some not so good. Just take one at a time and keep your onc informed as you have. My onc is great and always apologizes when I tell him what's happening. I have 2 more to go and I am so looking forward to getting back to some kind of normalcy.
    Good luck to you.

    Hugs and prayers,
    Candie
  • b445
    b445 Member Posts: 980
    edited December 2006
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    Wow a symptoms diary, you are really on top of it. Wish I had thought of that! I hate it when they ask How long has this been happening and I have to say I can't remember!

    Keep up the good work! 2 down yahoo! Each one is different so keep up that diary I can't get over wahat a great idea that is! If you have Rads do it then too!

    Wish I had done that. I got the results of my tests back and I'm dancing with NED! In fact I'm getting my port out exactly one year from the time it was put in! I'll get it out on the 21st! They also said the nodule in my lung is shrinking! And that there are no signs of scarring from the pnemonia and blood clots! Yahoo!

    Hope everyone is staying safe this holiday season
  • SCMartin
    SCMartin Member Posts: 112
    edited December 2006
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    Congrats, Cheryl! I'm sure getting that port out will be a huge step in moving on for you. I'm glad all the tests are good. Candie, two more to go! Remember when we started this ordeal? You will get back to feeling more normal when you are done. Radiation has been ok but the itching is driving me crazy! The cortizone creme made it worse so I am using the Biofene but there is a large area of redness. I have 9 more regular rads and 5 boosts to go. Sleeping is difficult because of the itching. I'll get through it and hate to complain. It was nice to hear from you both. Stay well and the end of treatment is in sight. Susan

  • dash
    dash Member Posts: 173
    edited December 2006
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    Cheryl--You're right without writing everything down, I was so afraid I'd blank out when I got in to see him and I was constantly feeling new and weird things so I just used the notebook and pen set that the onc nurses gave me(part of gift set they give to all new chemo people)--worked out well.

    Last night I had a significant amount of nausea, stomach pains and leg cramps. Anyone have leg cramps--or is this a coincidence?

    Yay, cheryl!! I am so happy for you! What a relief!!!
    Aww-Susan, how miserable...Can't they give you you a script for a stronger cream? (hmm, steroid cream?)
    Candie, Thanks--I won't get my hopes up too much. But I do think reducing the steroid will definately make a permenant difference for me with a certain amount of the problems I had. When is your last 2 treatments?
  • RaeMN
    RaeMN Member Posts: 36
    edited December 2006
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    I just want to give all of you going through treatment A HUG. Next year this time you will look back and realize it was very doable.

    That is what I am doing. I am a one-year survivor as of December 1, and as I look back, even though I was one of the lucky ones with Stage 1, No Lymph involvement, lumpectomy, 6 treatments of CMF, 33 treatments of radiation, Tamoxifen, and it seemed like there wasn't an end in sight, I am a stronger and more relaxed person for this experience. Just letting you know there is an end in sight and the year will go fast.

    Just keep using the message boards, there are so many people going through this stuff, and all of the responses help keep your spirits up.

    Good luck to the newbees...sorry you had to join our group....but there will be an end.

    Hugs, Rae
  • dash
    dash Member Posts: 173
    edited December 2006
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    Well, the nausea started later and stayed later this time around. Also went from constipation to the complete opposite the last 2 days.

    Going for a blood test to check my counts--wish me luck!

    Hope everyone is hanging in there!
  • d23
    d23 Member Posts: 20
    edited December 2006
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    Good luck! For me, I preferred the opposite to the constipation, because constipation made me nauseated, and I couldn't figure out which meds to take more or or less of. I'll never take a successful bowel movement for granted again.

  • b445
    b445 Member Posts: 980
    edited December 2006
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    Holly, the cramps may mean you need more water. Could also mean your potassuim levels may be dropping.

    I had a minor set back today. I spent the entire day at the ER. I have yet another blood clot in my lung, so it back on blood thinner for another six months. I also have a blood clot on just under the skin on my rib just below my breast that had the rads. They think the rads may be to blame for that one. at least I know the signs and got in before they cause any damage

    Hope everyone has a wonderful Holiday season.
    Hugs & prayers
  • dash
    dash Member Posts: 173
    edited December 2006
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    Oh CHeryl--I'm so sorry you had this happen but am so glad no damage was done. Both clots are due to rads?? Uggg, I hate this disease!! What signs did you see that made you get to the er so quickly?

    Potassium--I just had my first blood count test today--do you know if they generally test for that too?

    Hugs
  • socallisa
    socallisa Member Posts: 10,184
    edited December 2006
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    I had the diarrhia also..Should have bought stock in the Immodium AD company(haha). I think now they have a specific med for chemo induced diarrhia...
    Hugs, Lisa
  • dash
    dash Member Posts: 173
    edited December 2006
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    I can't take immodium but I asked the onc and I can take probiotics so I hope it will help. I will ask him about the special chemo diarrhea medicine Lisa--thanks for the tip. I can't decide which one I prefer d23--lol

    Oh my onc said I can take milk thistle to cleanse and support my liver through this and I looked online at Prevention magazine and Dr Weil recommends this too! I can't take my macular deneration vitamins(very high potency) but I can take a basic 100%RDA multi at least. It took me several years for my retinas to stop deteriorating with the help of these vitamins--send me some prayers/good thoughts that my eyes remain stable until I can take them again, please? Thannk you!! I have very early onset(since my mid thirties) dry macular degeneration in BOTH eyes(can suddenly turn into the wet kind which is the leading cause of blindness)
  • b445
    b445 Member Posts: 980
    edited December 2006
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    Holly, I had, have a heaviness in my chest and a nagging little chough. Mostly at night and in the morning, but also when it's colder. I had it the last time, May, but I thought it was my asthma acting up back then. Turned out I had double pneumonia and multiple blood clots in the lungs that time.I was told I could stop the Lovenox injections (blood thinners) Nov 12th. By Thanksgiving the signs had started again! Now I have to do the shots twice a day for at least two weeks and depending on the lab results they may let me drop back to once a day for three months then I may be able to take cummadine for the following 3 months. Then well see if I can come off all of it!

    They are saying the surface one if from rads but the other one the say our desiese makes us prone to them. Great!

    I will pray that your eyes stay stable through all of this. Can you use hydrating eye drops? I found that about three months in my eyes were watering all the time from dehydration.

    Remember to drink plenty!

    We'll be here to see you throgh this.
    Cheryl
  • dash
    dash Member Posts: 173
    edited December 2006
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    Hi Cheryl--sorry for all that you are going through with pneumonua and clots--it never ends, does it? The asthma is probably making you more prone to pneumonia, too. Do you give yourself the injections? Brave girl!

    I do use eye drops because I have regular old dry eyes, too. But the dry macular degeneration is something different--it is large yellow fatty deposits under my retinas--they crowd out the vision sensors as the deposits grow or multiply, eventually causing pockets of blind spots or virtual blindness. If it turns into the "wet" kind it means a blood vessel burst behind the eye and can cause immediate blindness. This is a disease of the elderly and it's bizarre that I even have it. Here's a quote from the NEI(National Eye Institute) just FYI--
    “At present, the only established way to decrease the risk of vision loss in people with large drusen (early AMD) is to take daily supplements of vitamins and minerals as used in the NEI-supported Age-Related Eye Disease Study (AREDS),” “This study found that high-dose antioxidant vitamins and minerals (vitamins C and E, beta-carotene, zinc, and copper), taken by mouth by people at risk of developing advanced AMD, reduced the risk of progression to advanced AMD by 25 percent and the risk of moderate vision loss by 19 percent.
    It makes me very sad not being able to continue my vitamins but as my primary care doctor says--you can't worry whether the elevator is working when the building is burning down-! lol
  • b445
    b445 Member Posts: 980
    edited December 2006
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    Unfortunately i do give myself shots. Did it every day for six month. had stopped for 25 days and now have to do it twice a day. They have to go in the stomach or outer thigh. But after I get my port out they are going to try to get me on cummadine which is pill form, since I will now have to take it for life!
    I will also have to really watch my diet since I can't have thinks that have vitamin K because of the meds, it will make it so they don't work. So now I have to do some reserch and see what that entails.
    It's a never ending fiscous circle.

    Hope you are adjusting to the chemo and figuring out what will make it easier to get through it. I thought I did pretty good with it. Would have hated to see what the other kind would have done to me! Just remember we are here and you can pm any of us if you don't see us around and just need to talk
  • SCMartin
    SCMartin Member Posts: 112
    edited December 2006
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    Hello, Just checking in on the CMF girls. Remember, you will get through this!! I agree with Cheryl. I would have hated to get the other chemo agents and now that I am 6 weeks past chemo, with two more weeks of radiation to go, I do see a light at the end. Although my chest and left breast would not agree. I have some bad skin reactions and hope I won't have any delays with rads. I'm supposed to have my last one on the 22nd. Next week I will gat the 5 boosts. Cheryl, I am sorry you have faced other medical problems and I hope they all resolve for you. Bayyore, keep plugging alond with the CMF- take it one treatment at a time as each one can be different. Candie, you should be getting to the end- good for you. I hope you are well. Like Rae mentioned above, next year at this time we will look back and truly realize what we all went through. Stay well everyone. Susan
  • d23
    d23 Member Posts: 20
    edited December 2006
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    Hey, guys, I'm just back from my last chemo!!! I'm zonked so don't mindy my typos. Just wanted to etll you. It really does get there. I agree with whoever said heach treatment is different. I have no idea how had this last one's going to be, but I don't care. What a difference an attitude change can make.

    Mindy
  • Sue227
    Sue227 Member Posts: 45
    edited December 2006
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    Congratulations Mindy!!!! I felt the same way with my last one, whatever it hit me with, I knew it was the last time so bring it on! Hope everyone else is doing well.
    Sue
  • dash
    dash Member Posts: 173
    edited December 2006
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    Yay Mindy---I'm so glad for you--at the finish line!! I hope the last one's treating you good anyway!

  • SCMartin
    SCMartin Member Posts: 112
    edited December 2006
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    Great Mindy, You did it!! No matter how you feel after the last one just knowing it's the final treatment helps you put up with any effects. Radiation next?? Congratulations1 Susan

  • c2et
    c2et Member Posts: 15
    edited December 2006
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    I wanted to wish all CMFers a Happy Holiday. Last December I was in the middle of my CMF treatments. For those of you currently in treatment I send my special encouragement and hugs.

  • d23
    d23 Member Posts: 20
    edited December 2006
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    Thanks, everyone. I feel great. I don't care how crappy I'll feel (it usually starts by tonight), ut, just as Susan was saying, knowing it's the last makes me not care. I had a double mastectomy and don't need rads, so that's nice. I'll just have to start hormone treatments, and then do exchange surgery in February. In some ways, it feels almost harder, the thought of living my life without the fear of something hanging over my head. Dealing with chemo really put that off for me. But I'm still so thrilled. Remember everyone, it really does end at some point. And all these nasty symptoms and side effects will be a distant memory some day. Thanks, Glyn, for reminding us of that! So far, Bayyore, I'm feeling good.

    Thanks to this group!!!!! Even when I don't feel good, I fee better because of you.

    XOXO Mindy