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CMF Question

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Comments

  • love123
    love123 Posts: 9
    edited February 2013

     Hi ladies! That's great news about the neulasta shots! I will keep my fingers crossed. I would love to skip that. A week from today at this time I'll be in the chemo room. Gosh, it is so hard to believe I'm going down this road again!  Life is full of surprises...gotta take the bad with the good! Have a great day everyone! XO!

  • Atall45
    Atall45 Posts: 43
    edited February 2013

    Robin...oh so sorry you had a bad reaction!! My MO says he normally never gives the nulasta shot with the CMF regime (I get it because my counts always seem to be low). Maybe you wont even need another one, I will hope this is the case for you. Hope your still feeling good. My next treatment is also scheduled for the 27th, looks like we will be having our cocktails on the same day.

    Curveball....How are you??? Are you getting back on your feet and feeling good.

    Love...so sorry your going through this again!!

    Hugs to everyone!!

  • traii
    traii Posts: 379
    edited February 2013

    Atall and love123 i will join you girls. Next treatment 27th too!!



    Hope everyone is well :)

  • Robin3
    Robin3 Posts: 93
    edited February 2013

    Me too for the 27th! :-) And I've talked to the nurses (my doc is on vacation) and we are going to check my levels to see if I even need the shot. Do you guys think the reaction was to the shot or to the chemo?  I guess that's the question they are trying to figure out. I got treatment on wednesday. The shot thursday at 3 and by 11 pm I was a mess.

  • ritajean
    ritajean Posts: 4,042
    edited February 2013

    Atall, love, and traii...although I wish that none of you had to make this journey, I'm glad that the three of you are going through this at the same time.  It helps to have fellow travelers with you to vent, share, and encourage.  You will all do fine.  The rest of us will also be here to help you in any way that we can!  Hang in there, go one day at a time, and it will be over before you know it!

  • traii
    traii Posts: 379
    edited February 2013

    Wow Robin welcome to the cocktail party being held on the 27th lol.

    When i was on Taxotere I had Neulasta shot around 10am and a few hours later bone pain started (im in australia and we aren't told to take any meds for pain) im sure yours was a reaction from shot.



    CMF does leave u with chest pain and intestinal discomfort...another lady on this board wasnt having a good time on CMF..she too is having her next one on the 27th!!



    Im having some hip pain at the moment. Waiting to see onc next weds as im a little worried.



    Riatajean did u have bone or muscle pain on cmf? Am wondering and hoping its late effects from taxotere!!





  • ritajean
    ritajean Posts: 4,042
    edited February 2013

    Traii....I did not have muscle or joint pain on the CMF.   However, once I was put on Arimidex, I did have joint pain but I got through the CMF fairly easily.  Like I said, I didn't even have any problem with the neulasta.  It takes a long time for the chemo to leave your body so maybe your pain is a remnant of the taxotere.  I would report it when you go next time but I wouldn't worry to much about it unless it becomes very painful.  Everyone reacts differently to these drugs.  Hugs!

  • traii
    traii Posts: 379
    edited February 2013

    Thanks ritajean. I was fine this morning until i walked around shoppinh! Ahh no pain no gsin as they say...lol

  • mandy1313
    mandy1313 Posts: 977
    edited February 2013

    Hi Traii!

    Towards the end of my CMF trip, maybe just before tx 7, I don't remember exactly when (I had 8 tx every 3 weeks), I had terrible pains in my shins.  I would wake up during the night because of the pains.  I told my onc about them and was told to "hang in there" the pains would disappear in time.  Well I did have them until the end of chemo and a bit after that, but they did go away. I don't know if that is similar to your pains and in any event, mention them to your onc and see what she/he thinks.   I kind of felt as if I had a case of flu for alot of CMF--you know the achy, not quite right feeling.  But it was not as drastic as some of the other chemos.

    Hugs to all.

    Mandy

  • traii
    traii Posts: 379
    edited February 2013

    Thanks Mandy for your info.

    Yes when i walk and sometimes sitting down then get up to walk my shins get sore. I know I have neuropathy pain in my feet and toes from Taxotere, so perhaps the hip pain and lower pack is a bit of CMF and a bit of Taxotere.

    Waiting to discuss with my onc next wednesday. No pain today except a little in my shins and lower back (walking and sitting in the car) but its bearable !!

    Hugs to you all

  • Timbuktu
    Timbuktu Posts: 1,423
    edited February 2013

    I didn't have that pain until 3 weeks ago, after sitting for an extended period.  I didn't associate it to neuropathy but I think it makes sense.  the pain went from the hip down to the foot and lasted on and off all of this time.  Tuesday, I woke up and it was gone.  No idea why.

  • mandy1313
    mandy1313 Posts: 977
    edited February 2013

    Hi again Traii and Timbuktu!

    In addition to the shin pains, I had neuropathy in my feet ... some mornings it was hard to wake up and stand on them.  So Traii, it may be that  some of your Taxotere neuropathy is exacerbated by the CMF. The good news is that after a few months off CMF, it was greatly reduced and at this point I think my aches and pains are due mainly to the fact that I am lucky enough to be getting older. :-) Hang in there.  You'll soon be done!

    Hugs,

    Mandy

  • traii
    traii Posts: 379
    edited February 2013

    Thanks Mandy / Timbuktu

    I went into see my Plastic Surgeon today and I managed to get hold of my onc passing by so stopped him, spoke to him about this pain etc and he did say that it was post effects of Taxotere , combination of neuropathy and CMF so to hang in there.....lol guess I will take your wise words and my oncs Mandy of 'hang in there' lol xx

  • love123
    love123 Posts: 9
    edited February 2013

    Traii

    I also had those same pains during and after Taxol when I went thru this in 2004. Then shooting bone pains would come and go and lasted a couple years. They got very mild once I stopped treatments but on occasion I would get a little zap here and there. Nothing too bad, just an ugly reminder! One in a blue moon I'll still get one! Only lasts a second and isn't very painful. My were in my legs.



    Gearing up for CMF #1 tmrw. I was wondering if any of you take any pills before chemo. i have a prescription for compazine and Zofran but forgot to ask if i take any beforehand! Its been a couple weeks since i saw the onc and didnt think to ask then. im sure i'll have time to take them in the morning once i get there since i have to get blood tests and IV first. But thought id see what you all do. Last time I took emend and had no vomiting or nausea (except for that nasty chemical smell/taste that is inevitable!) Might ask him about that too.



    Good luck this week to the 2/27 team!!

    XO!!

  • love123
    love123 Posts: 9
    edited February 2013

    Robin so sorry to hear about your bad side effects. (I was behind on reading posts and just got caught up). I hope this week is better for you. My very bad SE from neulasta last time was bad pain in my next and shoulders....not similar to yours. I hope you can skip it this week so that at minimum you can figure out if its due to the shot or the chemo itself. You may need to change up your nausea meds. What ones are you taking ?

    Wishing you great luck this time!!

  • traii
    traii Posts: 379
    edited February 2013

    Love123 Thanks for your info. I only do get the pains every now and then and only do last a second or so but enough for a 'reminder' !!

    They gave me nausea tablets but didn't have any as yet. I find that if I have something to nibble on, even one of those sugar free lollies, I'm ok and nausea goes away. I do have 8mg of dexamethosone in the morning of my treatment (instead of IV as it lessens my time there of 10minutes...lol) .

    Good luck with your CMF tomorrow. I am on my last cycle starting Wednesday providing bloods are ok as I've had a bit of a cold these last couple of days:( )

  • softness1
    softness1 Posts: 100
    edited February 2013

    I have always heard about bring fatigue but this is shocking. I've fared pretty well with my first infusion on Valentine. I was expecting the feeling sick. For 5 days I had waves of nauseousness, but took my pills, rested, nibbled on crackers but by tues I was 70%. Yay!! My blood count is good & I have over a week before another infusion. Aside for the bubble guts, I was feeling like I had gotten off easy, considering ( although I was a mental ball of depression. And even that is easing)



    lo & behold last Thursday around 2pm I couldn't keep my eyes open. I was so tired I was literally slurring my words. I couldn't wait until 5. Ran home dove in the bed and slept all of 4 hrs. So in just tired not sleepy. But me not sleeping just adds fuel to the fire. Friday!! Uuurrrgghh ! I felt like I was a metal and fatigue was a magnet... My coworker said I'm just like her 15month old. Because I was aggravated, whiny lol. At lunch I fell asleep in my cubicle and was snoring. I can't see me going 6 months like this I look a wreck. Bags and dark circles around my eyes. I am now taking ambien 10mg. But already it's 12:20am and I'm still up. I have 6 hrs before have to get up. This is crazy. I am good sleeper but the last few days have been brutal.....

  • traii
    traii Posts: 379
    edited February 2013

    Softness, glad you are feeling ok...

    I have fatigue on certain days...its crazy...I need to sleep when my son naps so I can have energy when he wakes up so I can play with him and cook dinner etc.....I'm glad I don't feel like that every day !

    I'm not familiar with ambien....is that to help keep you awake by the sounds of it ??

  • Robin3
    Robin3 Posts: 93
    edited February 2013

    Love, I did have neck and shoulder pain also. It hurt to the touch? Is that familiar? Yes we are changing my meds. My next treatment is wednesday. I'm putting a nausea patch on me on tuesday..called Sancuso. And this time I"m not taking zofran, but decodron and ondansteron? Last time I also didn't realize I could take the 2 nausea meds together. This time they want me to take both in the am and then again in the pm. Plus that darn shot. UGH. I am having anxiety about this treatment, but they know it. They gave me ativan to relax me and to also help with the nausea. Softness, I'm sorry but I smiled reading about you snoring in your cubicle. I don't know why but this is so cute.  I was tired the 2 days after treatment. This week I felt great that I finally taught my first zumba class since my lumpectomy (which was jan 11th)  My face turned beet red, but I did it!!! My ladies told me they could not tell that I was sucking wind inside! LOL I'm still working on keeping my stamina and they know im back on an "as I feel" basis. I used to teach six classes a week (in addition to a part time job) now I scaled back. I went down to 4 and gave up another class cause of this CMF. My doctor told me if I felt good to do it, so both group exercise managers know i'm here on a limited basis til this cancer nonsense is over. But darn it! It felt good to feel like ME again! :-) Hope everyone has a great day.

    Robin

  • Dianarose
    Dianarose Posts: 1,951
    edited February 2013

    http://www.nancysnotions.com/text/content/pages/GailsCKBeret.html

    The link is for a really easy beret pattern for those who lost or are losing their hair as I did. I am 3 1/2 months pfc and my hair is growing fast, but still weird so some days I just choose to wear the hats.

    I had a lot of Neuropathy while on CMF. Mostly in my feet and hands. My fingers still bother me. I sewed a skirt for my granddaughter the other day and the next day my neck and fingers really hurt.

    I was so tired on CMF, but couldn't sleep. It was terrrible. I went directly to radiation after chemo and that cured me of that. I could have slept standing up. It's been over a month since I finished radiation and I am still tired all the time. At least I am able to sleep now. The tissue expanders still make it hard to get comfortable, but in about 4 months I can get rid of them and get my squishy girls Cool.

    I hope everyone has a good day with few side effects. Here in the NE we are still digging out from yesterdays storm. I really hate snow and don't know why I still live here.

  • love123
    love123 Posts: 9
    edited February 2013

    Trail

    Congrats this will be your last treatment! Awesome! How many treatments did you get? I will have six. You'll soon have all your energy back to play with your 3yo!! How sweet! I miss those days so much. I'm 46yo and my kids are 17,15 & 13. They are still very fun, just in a different way. :)





    Robin, I sure how the change of meds will help this time! And the nurse here just told me that the Claritin-D does seem to be helping her patients too with neulasta se's. I can't remember if you tried that or not.





    Softness, I too am giggling about you snoring in your cubicle! That's so funny! You know what, girls, we just do what we gotta do! Right?!



    Ah the Ativan is kicking in now and I can feel the relaxation coming. Maybe I'll snooze right thru this first infusion!

    Enjoy the sunshine today...we have it here in Indiana and I hope you all do too! Snow coming the next three days.

    Xo!

  • softness1
    softness1 Posts: 100
    edited February 2013

    Robin!!! So glad to see you're feeling much better.I haven't had really bad side effects but the fatigue. I love that you're able to go on and kick butt. I'm sooo glad my oldest came home from college for the week (they're having early break)  HE DRIVES!!!!!!!!!!!!! Yay... He ran errands.. I was able to sleep all day Saturday

    Dianarose you hit the nail right on the head.. I'm soooooo tired but I can't sleep. I lie in bed and nothing happens. I get up for work with bags under my eyes looking like Don Knotts. It's the worse... I actually feel my bags when I blink.. they are heavy..hahahaha!!!!!

    Traii - Ambien is a prescribed sleep aid. I'm tired but I can't sleep more than 3 hours a night. I started taking it Saturday and I still can't sleep over 6 hrs, but I'll take it.. I went to sleep at 1am last night, was up at 6...that's great considering I would fall asleep at 2, wake up at 3:30, maybe doze back at 5am then get up for work at 6:30..

    Then sit in my cubicle all incoherent, slurring. It's the worse.  I need sleep to function at work. We're having a big meeting I need to attend and participate in this Wed.. that should be entertaining. Cool Hopefully the Ambiens will let me sleep tonight and Tues..

    love123...lol.. you are soo right. I wish it was warm because I would just go to my car to sleep through Set my cell alarm and go from there.. 

  • softness1
    softness1 Posts: 100
    edited February 2013

    I have a question. I had immediate One Step direct to implant reconstruction at the time of my bilaterial in Dec. I noticed that after my first CMF infusion my chest muscles went crazy. Is this unusual? I haven't heard about this before. My surgery was a success, the implants are coming along. I did have pectoral muscle spasms in the first few weeks after surgery but that was expected being that they had to pull it over the implant and add Alloderm.. But geesh, now I'm having pains, my pecs are going crazy again. I have an appt on thursday with my PS.. but I just wanted to know if anyone who had completed reconstruction (No TE) had tighening of the implants after chemo?

  • Atall45
    Atall45 Posts: 43
    edited February 2013

    Hello Ladies,

    I'm way behind on reading posts, thank goodness work has been busy and I have felt good enough to be out and attending some events. This all comes to an end tomorrow with my next treatment, I know there are a few of us having treatment tomorrow. Congrats to Traii for starting her final round!!!

    I read a few ladies are having trouble sleeping, I sleep a bunch the first few days and then it tapers into not being able to sleep very well, I take Lorazapan it helps with sleep and nauseousness. It works pretty well for me. I take the Zofran during the day because it doesn't make me sleepy.

    I to am laughing about falling asleep in the cubicle, I get it!!! Sometimes I get so tired I feel like I'm sleeping with my eyes open. I'm fortunate enough to be able to work from home a lot so I just go to the couch for half hour or so and wake up feeling much better. I don't know how I would function if I had to be in an office everyday or if I had young kids at home to take care of, you ladies that do this are amazing!!!

    Big HUGS to all of you!!!

  • Robin3
    Robin3 Posts: 93
    edited February 2013

    Congrats to you guys starting your final round today. Today is treatment #2 for me. Out of 8. So i'm looking at the positive and seeing that I will be 1/4 of the way done!? I'm anxious on how i'm going to feel after this. We changed all my meds. I started on an anti-nausea patch yesterday...so I'm thinking positive!!  Good luck all!

    Robin

  • Atall45
    Atall45 Posts: 43
    edited February 2013

    Robin3 - good luck today!!



    Training - congratulations last round!



    Two left for me after today!!

  • traii
    traii Posts: 379
    edited February 2013

    Robin all the best :) before you know it you'll be half way done.

    Keep thinking positive thoughts.



    Atall great news 2 more after

    today...onthe home stretch now :)



    Started my last cycle yesterday. Bring it on!!!

    BMX scheduled in May I have april free ..no appts for me :) planning a tip with my family :) ds is excited!



    My onc confirmed muscle pain fromcmf however can still be lingering from Tax and as the pain has almost hone away or is barely there he and i am happy!!!



    Wishing us all minimal SEs xx

  • softness1
    softness1 Posts: 100
    edited February 2013

    Good Luck Robin3 & Atall45!!!!!!!!!!Cool

    Keep chipping down the number of treatments!!!!

  • Robin3
    Robin3 Posts: 93
    edited February 2013

    For all that knew ...last week I had some kind of a reaction to my first cmf treatment. Whether it was the chemo or the nulestra shot We were not sure. So this week we changed my nausea Meds. I started on a patch. And have other meds orally. And now I'm getting the neupogna shot instead which apparently is a lower dose of the nulasta. In 3 smaller doses. But I call before the last one to see if I really need it Here's hoping to minimal side effects this time. Has anyone tried the nupogena shots? Should I still take Claritin d. My nurse said they usually don't but wouldn't hurt. So I'm gonna just take it. Two down! I'm just resting now I feel ok. Just kind of a sinus headache right now :)

  • Atall45
    Atall45 Posts: 43
    edited February 2013

    Robin3 - Glad to hear this treatment seems to be working better for you. I don't know anything more about the neupagen (sp) shot then you, I would agree though it wont hurt to take the clariton just in case.

    I to have had many changes since starting my chemo, I was allergic to my very first treatment of taxotere (bad bad time). Some nausea meds work better for some then others. I also keep notes on everything that I take and how it works and how it makes me feel and how long I need to take it.  Hang in there!!

    I feel like I have a bad case of the flu for a few days but that's normal for me no matter what I take.

    HUGS to you all!!! 

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