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CMF Question

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Comments

  • ritajean
    ritajean Member Posts: 4,042
    edited January 2013

    Dianarose...so glad you are nearing the end.  It is indeed a long journey but we CMF gals are tough!  Hugs to you!

  • ritajean
    ritajean Member Posts: 4,042
    edited January 2013

    Dianarose...so glad you are nearing the end.  It is indeed a long journey but we CMF gals are tough!  Hugs to you!

  • mandy1313
    mandy1313 Member Posts: 978
    edited January 2013

    Dianarose: You are almost there--hang in. 

    For nausea, I found anything ginger helped. I got some ginger sucking candies and I sipped ginger beer (it is not beer, but very gingery ginger soda and I got mine at Whole Foods). I found that I could not drink water without nausea and that flavored or fizzy drinks helped. 

    Anyway, as ritajean said, we CMFers are tough!  You will be done before you realize it.

    Hugs to all.

    Mandy

  • traii
    traii Member Posts: 379
    edited January 2013

    Hi Ladies,

    Hope you are all well.

    Just finished off my last 4 pills of Cytoxan for 2 weeks :) so 1 round down and 2 to go...!!

    Just a quick question......not sure if its from the previous regime of Taxotere but i have a little pain on my left side and wondering if this can be from Tax or CMF or should I be concerned and opt for an early appt with onc before the 30th Jan? Its been there for 2 dayss, not constant but there......just a little worried! ( I guess every ache now I'm a little concerened)

    Also, so much for a 'quick question' but did anyone suffer from like a mucositis type cold....onc said its common last time i saw him but it's doing my head in at times.......i cough not a dry one most times  sorry if TMI ...lol just worried and wanted to know if any of you had any SE"s other than nausea / vomiting as I've been ok with this!

    Thanks and hope you are all well xx Traii xx

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2013

    Traii- If I had known how much mucus my body was going to produce during chemo I would have bought some stock with a tissue company. After I finished chemo my nose just poured for about 6 weeks. It was gross. I would bend down and my nose would pour out. TMI, sorry.

    How is your hair holding out? I started to lose mine into week 3. I was devistated as the MO said I shouldn't lose my hair. I am a little over 2 month PFC and I have about an inch of hair all over and it is starting to thickin in a bit. It's very course and so not like my hair was before. I guess I just have to wait.

    Glad you are done with round one. How many rounds are you doing?

  • traii
    traii Member Posts: 379
    edited January 2013

    Ahhh i feel better reading your story Dianarose!!! Im normal...lol not tmi for me...lol

    I have 2 more cycles to go :)



    Lost most of my hair with Tax so uts still holding on!!!



    Did u get aches like chesty ones and your sternum area??



    Glad your hair coming back nicely :)

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2013

    Traii- I got all sorts of aches and pains. My fingers and feet hurt the most. My chest always felt like I had a bad cold.That has gotten a lot better. Today was my last rad and I feel like a ran into a brick wall. I have done nothing all day. I have no energy. I think I had more during chemo. I suppose this too will pass it's just hard when you are in it.

    What exactly is mantle radiation?

  • traii
    traii Member Posts: 379
    edited January 2013

    Thanks Dianarose, you truely have eased my mind...i know SEs won't go away right away as i have just finished Taxotere also and now straight on to CMF i feel like the aches and pains are coming from a bit of everywhere......!!

    Sorry you are not feeling the best today, but on the UP side you had your LAST rad...CONGRATULATIONS Laughing

    Rads did hit me more 16 years ago especially fatigue and pain..... lack of energy was at the 100% rate with rads and chemo I was still going out at the age of 18 years old and living it up (thats when we turn adults here so everything was still new....I wasn't going to miss out partying with my friends...lol)

    Mantle radiation was just the name of the type of radiation that they use to give back then....now I've heard its a lot less harsher and less 'long term' SE's which is great to hear.

  • mandy1313
    mandy1313 Member Posts: 978
    edited January 2013

    Traii, my onc described CMF as the kind of aches with the flu, only they go on and on for the whole tx.  So your aches sound just like what she described.  The good news is that they do stop after treatment.  I had terrible broncitis from CMF but you need to make sure yours is just from CMF and that you don't have a fever or something else going on (I had both kinds--the kind that needed an antibiotic and the kind that was just a chemo induced cough). It never hurts to call your onc to check.

    Sending hugs to all.

    Mandy

  • traii
    traii Member Posts: 379
    edited January 2013

    Thanks Mandy. Im feeling 'flu like' achey this morning and nasaly...hope its not a cold just chemo SEs ... still waiting to hear from onc...left message 3 days ago!!



    I wil phone him this morn...thanks again, mind again gone into ease mode!!!!

  • Atall45
    Atall45 Member Posts: 43
    edited January 2013

    Hi Ladies...

    I have the flu like symptoms as well starting the day I get my infusion for the next 3 days then it tapers off. I don't have the mucus you all are talking about but my nose runs often.

    Trali...I can't believe you have to wait 3 days for a response that's awful!! I know I have a great clinic but the more I read others talking about theirs the more blessed I feel. You need to call, call, call!!

    I was thrown for a loop yesterday at my treatment, I was told they want to double up on my cytoxan pill, change it from 50 MG to 100MG per day. I guess this was always the plan but I didn't remember it. Said since my last treatment was so difficult they wanted to start slow.

    Not that were all on the same but for those of you on the daily cytoxan pill and the 6 month treatment plan what is or was your MG??

    Thank you all for your help and responses

    HUGE HUGS!!

  • traii
    traii Member Posts: 379
    edited January 2013

    Hi Atall

    So u had another infusion yesterday? So start cycle 2 right?? This is why im calling my onc.....i have to wait 2 weeks for next cycle to start!!!

    Im alternating cytoxan pills...one day 150mg the next 200mg!!!

    Slight nausea..but havent needed nausea meds so far!

    Hope u keeping well .hugs

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2013

    One thing that took me a few weeks to realize is that my nose was running more due to the fact that I had lost my nose hairs. They really do have a purpose. Those are coming back as well as the dreaded ones on the upper lip, bummer.

  • Atall45
    Atall45 Member Posts: 43
    edited January 2013

    Traii...Wow you lucky girl, no nausea and your taking that much!! I'm happy for you!!

    Yesterday was my third treatment so the end of cycle one isn't until next week. However I don't have any breaks it's every week infusion and every day pill.

    Dinanarose...Yes that's what happens to me when it starts to run I had better be ready cause it's coming out :)

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2013

    For those who just started I wish you all an easy as possible road. You will all get there.

  • traii
    traii Member Posts: 379
    edited January 2013

    Thanks Atill, yes slight nausea for a hour or so after that I'm ok :) sorry you are having probs hun :(

    Well i knew my onc was in clinic this morning  so i phoned him there.....well not to be pushy but I have been waiting over a week for a call back from AN onc re my question, but speaking to mine directly did put my mind at ease too about this 'cold like' flu thing thats going on with me...lol

    My regime is correct per his info...(but just needed to clarify) apparently CMF can be given in diff ways ....mine to clarify I do have a break...so 1week I have the chemo and same the following week and for the first 14 days the pills then 2 week break then start again. So 1 cycle down and 2 more to go, next cycle starts 30th Jan !

  • mandy1313
    mandy1313 Member Posts: 978
    edited January 2013

    Traii:  Your onc's office leaves alot to be desired. It is not pushy to expect an answer to a question.  Several times during my chemo, I ended up with infections and they could not have waited 3 days or longer for an answer from an onc.  I required immediate antibiotics.  So go on and be "pushy," if that means getting proper care.  I had my onc's email address -- I did not take advantage of it, but when I needed an answer, I wrote and I certainly received a  prompt response.

    In addition to dry eye, I had a period of runny eyes and runny nose from the CMF...it was embarressing to leave the house because I was just dripping everywhere.  For that there was nothing to do although eye lubricant drops helped the runny eyes somewhat.  But if you feel what you have is unique, do get in touch with your onc.  We are all different and we all respond in different ways--and for many of the side effects, there are simple things your onc can give you.

    Take care all!

  • traii
    traii Member Posts: 379
    edited January 2013

    Mandy, so true..he does leave alot to be desired at times...i like my onc and get along with him, but because I've had not much SE's he thinks i'm getting through things like a 'breeze' ... mentioned to him about my cough, got response, normal, mentioned mucus, normal...mentioned sore aches and pains said 'most likely' the post taxotere SE's still .

    Did you have any aches or pains here and there with CMF at all ? I know its not my imagination, (although I wished it was) but I did mention to him if he does scans after my chemos finished all in March and he said no as I had NO cancer when I started as they took it all out and I did ALL the scans that there were to have prior to chemo..,sometimes we just need that reassurance again.....he said it costs money for scans and I said I never once mentioned I didn't have money and i'm quite happy to go pay for it, even if it means thousands of dollars for a peace of mind then so be it I'll pay!!!

  • ritajean
    ritajean Member Posts: 4,042
    edited January 2013

    Traii..The scans do provide "Peace of Mind" but the extra radiation is not good for our bodies.  That is another reason that many oncs don't routinely scan unless there are symptoms or we're having unusual problems.  You will become more comfortable with this as time progresses.  Right now it is SO scary!  I'm glad that you're having so few side effects. I was pretty lucky with my chemo, too, although I think I had a bit more nausea than you.  I hate that feeling so it didn't take me long to figure out what worked for me to squelch that nausea.  Hugs to you!

  • mandy1313
    mandy1313 Member Posts: 978
    edited January 2013

    Traii, Ritajean is right about all of the extra radiation.  Still I can understand the feeling of not wanting to wait till there is a symptom of something. After your chemo, talk to your onc and see if there is some kind of follow up that will put your mind at ease. 

    You asked about my aches during chemo and let me assure you, I had lots of aches and pains during my chemo--in fact, I'd wake up from pains in my shins. As I mentioned my onc mentioned the aches to me.   My onc felt that between the nausea and the aches, it was like a 6 month long case of flu and she said alot of patients just get tired of not feeling up to snuff for so long.  So if your aches are flu like, they are the ones I had.

    Does your onc perhaps have a nurse you could call?  He seems to just push any questions away. Sometimes there is a nurse who might handle the questions better.  It is just a thought.

    Before you know it, you'll be at the end of your chemo and looking forward to chemo free days.

    Hugs and have a nice weekend.

    Mandy

  • traii
    traii Member Posts: 379
    edited January 2013

    Thanks Mandy & ritajean :)



    It is flu like symptoms and sinus rolled into one!!



    I understand re scans putting extra radiation etc....



    This all is scary and that horrible feeling you get in your mind re aches etc drives me crazier...lol



    I know it will always be at the back of my mind the living in fear with horrible bc....guess everyone gets that fear and im not alone, just need to get over it and live my life hey!



    My onc doesnt have a nurse to call and the bc nurse was useless...never there when i called, never called back...duty of care was at 10% only would put on happy face if my 2 bc surgeons were in the room!

    Thanks ladies you rock xx

  • curveball
    curveball Member Posts: 1,583
    edited January 2013

    I'm finished with chemo, and so glad to be done! In fact, although I completed all 26 weeks of the cytoxan, I ended up cancelling my last infusion. Over the last week of the six months, in addition to feeling worse and worse, I developed a fever which at first stayed under control with OTC meds, but eventually got as high as 102 even though I kept on taking them. By the 9th, the day of my last scheduled treatment, I felt so rotten I canceled my infusion and stayed home, and by a week ago, I had done nothing but lie in bed for two days and felt so awful I asked my mom to take me to the urgent care clinic (not quite ER). I really didn't want to go, because in the past when I've gone there with a bad cold or flu, they checked me out and sent me home with instructions to keep self-treating until I got over it. I almost stayed home, because I expected nothing but an exhausting trip with nothing to show for it but a repeat of my past experiences. It's a good thing I did go, though, because what I had thought of as simply more of the same side effects I had been having all along, only worse, was really pneumonia, which may have been coming on for as long as two or three weeks by my guess. I ended up in the hospital that night on oxygen. All tests for infection (including some weird ones you can get from being immune-suppressed by the chemo) turned up negative, as did a flu culture. My oncologist said the pneumonia was most likely a reaction to either the cytoxan or the methotrexate. I had simply had as much of it as my body could tolerate. My temperature once got as high as 103, and I eventually got so bad I had to be intubated and put on a ventilator overnight to keep my blood adequately oxygenated. Eventually they got control of the inflammation and fever, and I got out of the hospital yesterday, feeling very weak and wobbly. So now I'm on prednisone for a month, plus an antibiotic as a precaution against an infection you can get while taking steroids, and I'm already feeling better, I think not only because I'm (sort of) over the pneumonia, but also because the chemo drugs are starting to clear out of my system.

  • mandy1313
    mandy1313 Member Posts: 978
    edited January 2013

    My goodness Curveball, what a hard time you had.  I have another friend who developed a chemo induced pneumonia last fall so you are not alone in this.  She continued to improve and is fine now.  I am  so glad that you went to the ER and did not put it off longer.  Take care and let us know how you are doing.  

    Congrats on finishing chemo and hope you are soon feeling completely well.

    Mandy

  • curveball
    curveball Member Posts: 1,583
    edited January 2013

    @mandy1313, thanks! I feel a little better again today. My discharge instructions are "take your meds, do a little, rest a little" (rinse, repeat)". I took a desperately needed long shower this AM and completely tired myself out! I've been lying on the sofa watching TV pretty much ever since then, except to get up and eat lunch. Lazy me! I better take a lap or two around the dining room table to build up my stamina. In the hospital everything was smelling peculiar, and the smell seemed to stick around after I got out, and even be coming out at my pores. It's going away now, thank goodness! I don't know if that was meds, disinfectant, or what. Also, everything is tasting a little odd. I don't know if it is because of one of the prescriptions I'm taking now, something from the hospital, or because everything gradually got tasting different little by little over the last six months due to the chemo drugs, and is going back to normal as the drugs clear out of my system. But that's a minor deal.

  • Atall45
    Atall45 Member Posts: 43
    edited January 2013

    Oh curveball I'm so sorry to hear about your pneumonia, I have been wondering where you were and why you weren't telling us how happy you were to be done with your last infusion, never did I imagine that you were in the hospital!!! I'm so sorry this had to happen to you on your last treatment, you should have been celebrating.

    I had a fever 4 days after my first infusion with taxotere (among a million other side effects), lucky it happend while I was getting hydrated at my oncs office, they started my on IV antibiotics right away.

    I'm glad your starting to feel better!!!

    Traii....I'm still floored by the lack of response or caring at your onc office!! I'm so sorry to hear this. My office has a team of onc nurses that call you back within a few minutes, they will even have you come in and evaluate your symptoms and if the Dr needs to see you he will come over to this area, we even have a nurse practitioner that works with the onc and she will come in as well. I'm so sorry your not experiencing this level of caring and respect from your office. After each infusion my nurse gives me a great big hug and smile, I'm so fortunate that I found such a wonderful place to go.

    Ritajean and Mandy....Thanks so much for sticking around and checking in to help us ...We really do appreciate it!!!

  • traii
    traii Member Posts: 379
    edited January 2013

    Curveball, welcome back and congrats on final chemo....but oh so sorry to hear you've been in hospital, thought why hasn't she come on here doing that big ol' happy dance we can't wait to do......... glad you're getting back on track of it all now....my goodness, one thing to finish chemo and be all excited then pnemonia!!

    Atill, I know, my oncs team's duty of care is one to think about, i'm going to bring it up with him and gett his direct number or perhaps SOMEONE that i can speak with, he does have the registrar but I sitll want someone I can phone and talkk to when I need to !!

    So glad your experience is good with your hospital.....I'm lucky to get a 'see ya later' by the nurses let alone a hug...lol.....my son came in with my mum the other day (he's 3) they didn't stay there the whole time, mum kept walking out with him etc but some nurses would look at mum as if to say 'get him out' and others were nice oming up and talking to him etc.....oh well...guess he will have to stay home with mum next time don't want to get on the wrong side of some of those nurses now..lol

    Hope you all enjoy your Sunday.....2 of my nails finally pushed through and part came off....still side effect from Taxotere, think they are all going to be pushing through same way, a little like acrylics do if you don't take them off before they actually grow out...lol.....does anyone know if we can put a nail hardner on the new nail thats rather soft and rigid or should I just leave them open to 'breathe' ??

    thanks Traii xx

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2013

    Curveball- glad you are feeling better. Sorry you had such a rough time. I guess I was lucky. I am glad chemo is done for you. Do you have to do any radiation?

    I still have that yucky metal taste in my mouth and I am over 2 months pfc. Has anyone else had this problem?

  • curveball
    curveball Member Posts: 1,583
    edited January 2013

    @Dianarose, no rads for me. I don't have a metal taste, but almost everything seems to taste different than it did before. Maybe this is my big opportunity to make some major dietary changes. If everything is going to taste weird anyway, could be time to get used to a new way of eating. I've been thinking of making some changes in that area.

  • traii
    traii Member Posts: 379
    edited January 2013

    Dianarose, I haven't had the metallic taste in my mouth with CMF , I did in a big big way with Taxotere!!

    Everything tastes sooooooo good...lol....I need to make a change in my diet, more so when chemo finishes, I need to make big changes.....

    Hope you feeling good Curveball.

  • ritajean
    ritajean Member Posts: 4,042
    edited January 2013

    Curveball's a CHEMO GRAD!!!!!  So glad that you're done but sorry that it ended so  traumatically.  Rest up and follow the doctor's orders and you'll soon be back to your "new normal."  Remember that it will still take a while before you're 100%.  We expect to be feeling perfect as soon as the chemo ends but that chemo was cumulative and it's going to take a little time to get all of it out of your system.  Hugs to you!  Recoup and get right on with living your life.

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