January 2012 chemo

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  • BelaT
    BelaT Member Posts: 217
    edited March 2012

    Charb22,

    I am sorry for everything happening at once in your life, but all I will tell you is that focus on you self.May I ask what were SE at last AC?

    Segorver,I had neupogen and it was ok but again backaches.

     miniwheat, I am sorry you have no appetite. I hated texol. I had problem with it big time.

    jann, to tell you the truth I have a pain too at site. I am sure its not cancer. but i will pray and keep fingers crossed.

    Janet, Thanks for the advice. and hopefully it wont be hard.

    Its last Chemo but 3rd AC so I dont know what to think.

    Thanks

    Bela

    Hugs to all. 

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  • PCBarbie66
    PCBarbie66 Member Posts: 84
    edited March 2012

    Jenn ~ I went to the surgeon on Monday for my 120 day check up (hard to believe it's been 4 months since the surgery portion of this nightmare). Hope your pain is nerve regrowth.....I forgot to ask my doctor a lot of questions... How should I feel, now, today at 120 days???? I basically forgot to ask how is the rest of world compared to me?????? Where is that freakin' handbook!!!

    Mary Tyler Moore Moments ~ All of you make me smile!!! Throwing your hats off, Wigs in the backseats, working bald!! I have been struggling with my head covering everyday. With my Flame On/Flame Off dial I carry around everywhere I go, It's hard to find relief..I went out to eat last night...was on fire so much & so often, I won't do that again till the Taxol is DONE. Could barely eat, and was to miserable to enjoy my friends.

     Nail Pain~now that some of you are on the Taxol portion, do your nails hurt?? Mine feel like a slammed them in a car door...there are red lines moving down from the cuticles and some dark patches here in there I can see through the nails. My MO said the pain is expected...great...and my chemo nurse said I may loose my nails...another great...does Icing work to stop that or just the neuropathy/tingling sensations?? I'm getting my 3rd Taxol of 12 this Thursday and am not looking forward to more nail pain...I'll be back on pain killers in no time. I have no toe nail pain, just finger nails...weird.

    But all in all Taxol is easier than the AC.
    Are you all drinking as much water on the Taxol???? I've lost a lot of my appetite, and eating has become forced, lately.

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  • denjak
    denjak Member Posts: 36
    edited March 2012

    OK ladies:

    Had my first Taxol  last Wednesday, and I thought all was OK, fingernail pain even though I used ice at infusion time. By Saturday 5pm, I was in bed with severe muscle and bone pain..couldn't walk to the bathroom. Every at-home pain reliever, heating pad and hot-soak tub was no relief. Monday night 2am woke up with such severe pain in right elbow and shoulder was in tears!!...again, nothing helped. Saw my Onc on Tuesday.... first thing when I was told I was having a bad reax to Taxol. I am back on the Decadron and half a pain pill to keep me functioning. I feel as if I am going to fall over with no feeling from knees to feet. WalWalked into a partition at my office..too funny. They are switching me to Taxotere (sp?) Even with all this Taxol is still better than AC.....I think.

    Hang in everyone..I have three chemo infusions to go....done 4/18.....birthday 4/28....talk about celebration time!!

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  • Seagrover
    Seagrover Member Posts: 46
    edited March 2012

    Kitchenella, did you get this backache each day with the neupogen shot? I just want my count back up so i can get the 5 remaining treatments of abraxane and carboplatin.

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  • denjak
    denjak Member Posts: 36
    edited March 2012

    Bela T:

     My throat pain after #3 AC was so severe. I didnt eat for days. Even liquids were painful. Almost like muscle spasms....randomly....really lost energy.  Lost 7 pounds. My doctor's nurse practitioner said...never heard of throat pain. Really? had to laugh.

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  • CharB22
    CharB22 Member Posts: 310
    edited March 2012

    Jenn--I've also been getting pains in my lympectomy breast and not near the incision. My MO said that it's scar tissue building up and could be painful for 18 months. She didn't seem concerned at all. Hopefully that's all yours is.

    Janetanned- no neulasta shot after Taxol. It's not standard protocol (transation: insurance won't pay for it), so I go on Thurs for CBC. If my WBC is low, then I would get Neulasta shot. Pain has been pretty good yesterday and today. Ibuprofen is doing the trick. But for the 3 severe days, I was taking Oxycot left over from my lumpectomy. FIL passed away yesterday, so we're now dealing with that too. My poor boys. This is the first grandparent they've lost. So in addition to mommy being treated for BC, their Pop Pop died. Ugh.

    As for feeling like a surivor now, instead of a cancer patient -- yup. I've felt that way for a while. When I went to see my PCP the other day, she told me I looked great and I didn't look like a cancer patient. I told her it was because I'm not a cancer patient. I don't have cancer anymore. The surgeon got it all. And it's not coming back!

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited March 2012

    Char - So sorry to hear about your FIL....when it rains it pours.  Your family will be in my prayers.

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  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited March 2012

    I've had a sore throat after each A/C treatment but usually lasts only 3-4 days.   I sound really hoarse too.  My A/C #4 was the worst as far as fatigue.  I am just starting to crawl out of it after 10 days.   Taxol is next week.  I am going to get some Glutamine.   I heard taking it 4 days after each taxol helps to prevent neuropathy.

    Miniwheat - (and any others) with liver problems.   I posted awhile back about my high liver enzymes and that I started on pure Milk Thistle.   I am still taking it and my liver enzymes are back to normal.  My MO was amazed.

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  • CharB22
    CharB22 Member Posts: 310
    edited March 2012
    BelaT- the SE with my last AC was mainly exhaustion and feeling sick. Not really nauseaus just sick - kind of like the flu. My WBC was below 1 so that didn't help. And apparently, my sugar levels are very high which also makes me feel lousy. I won't kid you - it was rough, but I kept telling myself it was the last one. And I slept a lot.
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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited March 2012

    Forgot to tell you all that I picked up my pelvic ultrasound results yesterday and cracked open that stupid seal that says "only to be opened by the referring doctor" (I always ignore that seal). Found that despite my CT scan report in January stating my uterus was "bulky" my trusty uterus and ovaries are actually normal normal normal. I do have a cyst on one ovary but I looked up the type it is and found that 50% of women having pelvic ultrasounds are identified as having at least one of these cysts. Smile

    Off to my MO appt in just over an hour. With this horrible breast pain and the lumps I'm assuming I'll come back with either a referral to my site's lymphodema specialist (yes, they have one) or back to my breast surgeon. Will let you all know.

    I hope everyone has a peaceful, stressless and pain-free day today (we can always wish...).

    Jenn

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  • BelaT
    BelaT Member Posts: 217
    edited March 2012

    CharB22, Thanks for the heads up :)) I hope I don't have deathning constipation. Scared.

    denjak, I am having same problems, throat sore and painful. I hope this one is ok. its my last chemo but 3rd AC so I dont know what should I expect.

    scared

    Thanks

    Bela 

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  • BelaT
    BelaT Member Posts: 217
    edited March 2012

    catwhisperer,

    Thanks, my onco told me all this was my anxiety and all I need is xanax , now I know I am not crazy. Thanks

    Bela 

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2012

    Bela:  Hands - I tried to twist off some dried-on jar lids about three days after treatment, to the point where the inside of my left hand was sore.  The next day I had a couple of blisters starting on my palm, and my left thumb was red and very tender, as was the palm.  I understand that AC can leak out of the capillaries and make the skin tender, hence the blisters, etc.  My hand was numb and tender until just a couple of days ago.  Getting back to normal now.

    Taxol - My Oncotype score was 42, indicating a high recurrence rate, so I'm doing a pretty intense chemo regimen.  Instead of 12 Taxol, I'm doing 6 dose-dense treaments over 12 weeks.  My final chemo treatment is scheduled for May 24 - and then I start 30 rounds of radiation on May 29.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2012

    Jenn:  Been thinking about you today.  I'm glad to hear your uterus and ovaries are all good - even a cyst is good news right now!  Let us know how your MO appointment goes; thinking good thoughts and that it's something simple and easily treatable.  *hugs*

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  • miniwheat
    miniwheat Member Posts: 52
    edited March 2012

    Jenn:  Thinking about you as well, hoping things went well with your appt.

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  • Momof2inME
    Momof2inME Member Posts: 683
    edited March 2012

    Nancy:  I am curious what your RO said about starting radiation soon after chemo. My last taxol will be May 23rd very close to you. I met with RO last week for consult and he said I need to wait 3-4 weeks for my body to recover from chemo. I would definitely rather start sooner if all my bloodwork is good which it has been. What were his/her thoughts?? Thanks for any help.

    I had Taxol/Herceptin #2 today. No reaction, so onc nurse got to speed up infusion. In and out in 5 hours. Much better than last week's 6 1/2 hour day. A tiny bit of nausea tonight, nothing even remotely compared to A/C. Am preparing for the 2-3 day sit in of bone pain that will probably start Friday. I am so jittery from these gosh darn steroids (not what I really want to say). I just despise them. I asked MO if we could please, please reduce them. He said not until after my 4th treatment. Hopefully out of the woods for any reaction by then. As you all can see I am becoming less and less depressed about this BC crap, but becoming more and more impatient with it. Anyone else?? Don't know if that's good or bad. I'm just gonna blame the ROIDS. Smile

    Good luck to everyone for the rest of the week!!

    Brooke

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  • grateful33
    grateful33 Member Posts: 58
    edited March 2012

    Hello everyone

    Caught up on reading all posts in the last few days. Have been unable to post a reply as AC#4 hit me hard with extreme fatigue, weakness and hand foot syndrome in the balls of my feet and both fingertips. So I have been unable to type on the computer much! I am sorry for others who are also having a hard time with side effects.

    Sorry I am not replying individually as I have quite the chemo brain going on and just had my first dd Taxol today. For those of you starting tomorrow (Nancy and others) I was scared out of my mind re allergic reaction and knock on wood I didn't have one. The nurses are well prepared for this though and as Janet says I think we are in good hands with professionals who have been dealing with this for years.The iv Benadryl did make me drowsy and I found that relaxed me in an odd way.

    Not looking forward to the bone pain that is supposed to start in 2 days or so. My heart goes out to all of you...

    Jenn- I also have significant pain in my lumpectomy site and ALND site- saw surgeon few days ago and she said this is normal for a year or so. Wishing you luck

    Many hugs to all of you. I think of you all often and send positive wishes for everyone, eventhough I am not always able to post.

    xoxo

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  • FLDREAMER
    FLDREAMER Member Posts: 166
    edited March 2012

    Well, here I am.   Dreading my 4th AC tomorrow (Thursday).  It's my last AC.  Then, in two weeks I'll start the first of my 12 weekly Taxols.  

    It's scary to read of everyone's SE's but I know that doesn't mean I'll have the same. I do appreciate everyone sharing their stories.  It gives us all at least some idea of what is possible. I'd rather know than be blindsided!    

    I am sorry to hear of all of you who are having it so rough.  I hope it eases up very soon.

    Just wanted to check in briefly.  Take care, everyone!

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited March 2012

    grateful33: good to hear someone else has had a similar experience and it was OK. My concern though is that the pain and "lumpiness" is not in the same site as my lumpectomy. My lump was taken from the underneath of my breast and this pain is at the top and extends up my chest.

    Had my appt with the MO this morning. She is so lovely - always gives me a hug when I'm leaving. She had a good "feel" and couldn't feel any lumps however she is concerned enough about my symptoms to ask me to make an appt with my breast surgeon for asap. So, I have an appt next Wednesday and assume I'll end up having to have an ultrasound or something to take a look.

    My MO said she's NEVER had a patient who had local recurrance during FEC cycles (which I've just finished) and I sure do hope that I'm not her first because I know from reading on here that it's not unheard of Frown. I'm hoping that even if it is local recurrance it will be tackled by the Taxol and Herceptin that starts tomorrow. Guess if it is though I'll be heading for a full mastectomy...

    My liver function tests were better this time. Two out of three of the labs are now either back down to normal levels or just sitting slightly above. My GGT however is still sitting at 175 which is only 10 units down from the 185 that it was 3 weeks ago. My MO didn't seem too concerned about it though and so I'm going to pretend to be not concerned either and just see what happens by the end of chemo and afterwards.

    Thanks for all your positive thoughts this morning (which was mostly your evening) everyone. Believe it or not I don't feel panicked about this and I'm sure I felt you all there with me.

    Jenn

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  • Kitchenella
    Kitchenella Member Posts: 279
    edited March 2012
    Praying for you Jenn.

    Seagrover yes. Like clockwork. One night the nurse refused to give me Tylenol or any pain reliever because it wasn't on my chart. If I had not been so out of it I should have gone out in the hall and hollered my head off. LOL.


    FL. Hang in there. I was just really, really tired after AC4 and it lingered. Just go with the flow and try not to get depressed. It will pass eventually.

    Peggy

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  • DianeNMil
    DianeNMil Member Posts: 130
    edited March 2012

    Jenn - my thought and prayers are with you too girl!!  One day at a time.

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  • BelaT
    BelaT Member Posts: 217
    edited March 2012

    Hi everyone, walking out for last AC.

    Hopefully it will be easy.

    Thanks

    bela 

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  • denjak
    denjak Member Posts: 36
    edited March 2012

    Go BelaT! Last AC....

    I felt it was a real milestone. Done with the nasty. I was half way through...hang in ladies.

    Apparently I am now being switched to Abaxane after #1 Taxol bad reaction. Anyone tell me about Abraxane? Thanks for all  the posts.

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  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited March 2012

    I am starting Taxol on Monday and am going to ask my MO about taking 20 grams of Glutamine and also taking Alpha Lipoic Acid (ALA).    There is information you can print on WebMD about the supplements in helping prevent neuropathy and joint/bone pain during chemo (specifically Taxol) if you are interested in asking your own MO.  I can't seem to paste a link but you can go to their website and look up the supplements.

     

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited March 2012

    denjak - Abraxane is still Paclitaxel but with a different chemical carrier used to "dilute" it to make it absorbable by the body. The carrier used is actually far less toxic to humans and so Abraxane has far less allergic reactions (it's the carrier in Taxol that causes the reactions, not the Paclitaxel itself!).



    The reason why they don't use the less toxic Abraxane for everyone is, I understand, economic - Abraxane is far more expensive than Taxol.



    I wish I could get Abraxane...



    Jenn

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  • DianeNMil
    DianeNMil Member Posts: 130
    edited March 2012

    I was switched to abraxane after 5 weeks of taxol. The only real prevalent se I have been having lately is exhaustion And hair loss. Didn't lose it on taxol. I think it is criminal that it is not first course of action instead of taxol! The huge doses of steroids were wrecking havoc on me.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2012

    Good afternoon, all (well, afternoon depending on where you are!)

    Stll hooked up and at the infusion center - 5.5 hours since we walked in the door.  Apparently I was *so*excited for my first Taxol treatment that I arrived 20 minutes early!  :-)  And let me just say, I could never pull off the super-short dress that my MO was wearing today - she's got legs that rock!

    They loaded me up with Ativan because I explained I was very nervous about potential reactions, then Zantac and 20 mg of Decadron (omg - my first found of AC they gave me 10 mgs of decadron and I had "galloping heartbeat" for days, so what the heck is 20 going to do to me?!)  I was so loopy I could barely stand and walk to the bathroom.

    Then we started the Taxol.  After about three minutes my nose itched, so I scratched it.  Then my arm, so I scrated it - then the nurse came over and stopped the drip.  "You're having a reaction" she said.  I said, "no, I itched, I scratched, it went away, I'm fine"  She called the MO over, who asked if I had hives - no.  Nurse said, "her forehead is pink".  MO decided it wasn't a reaction (I figured it wasn't) and that we could continue.  About 5 minutes later I sent DH down to get me a sandwich and chocolate milk (yum!)then I took a nap.

    So - no reaction/problems with Taxol, at least during infusion - yea me!!  I was scared, but had no reason to be.  (Oh, and no restless leg, either).  Was told this morning by the nurse (who had it) and the MO that this will be a "walk in the park" compared to AC, and I believe them.  Worst part of the treatment is the 3-hour drip of *just* the Taxol, so we will be here almost 6 solid hours. 

    Ask for Ativan if you want/need it, and just be aware of your body and what feels "odd."  They'll be watching you closely and are happy to stop the drip at any moment if they feel something's not right, so speak up!  It's easy to restart it, or even start you on something different.

    Good luck to everyone today, tomorrow, and in the days to come!

    xoxo

    BTW - I have to continue taking the Neulasta shots after each Taxol infusion.  I wonder if that'll help with the bone/joint pain?  I'll keep an eye on it and let you know.

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  • Kitchenella
    Kitchenella Member Posts: 279
    edited March 2012

    Nancy are you getting weekly Taxol?

    I had my first infusion.  I had 3 bags of something beforehand.  I was a bit sleepy/loopy but did get the restless legs so I couldn't really sleep.  I called those my frustration medications.  The actual Taxol drip took didn't take long.  

    We arrived 20 minutes late, because of foggy roads, at 8:20 AM.  The nurses didn't even show up until after 9 and my  nurse didn't pick up my chart until after 10.  They finally started my drips around 10:45 and we were out of there by 1PM.

    So far I'm feeling really good (probably from the steroids).  No racing heart yet. Hopefully never.

     I was reading the side effects of the different paclitaxel and it seems the major differences is Taxol lists the neuropathy and mouth sore issues where the Abraxane mentions the bone and joint pain.

    Peggy

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  • Janetanned
    Janetanned Member Posts: 532
    edited March 2012

    YAY Bela!  You are`half way home!  Do you see the light at the end of the tunel?

    Denjak - How bad was your reaction, if you don't mind my asaking?  I reacted, but was okay to continue after having my benedryl doubled and more steroids added.  Like Jenn, I wish they just gave me the less reactive form of taxol.  Now I need to take 20mg (5pills) of dex tonight and 20mg more tomorrow morning in addition to what they will give me before the infusion.  I hate these steroids!

    Catwhispurrer - Thanks for the link.  I'm going to check it out.

    Nancy - Good for you!  No reaction! Isn't it kind of creepy how closely you are watched?  Its good, but just a little weird.  I'm taking the neulasta shots also.  I think its a good thing.

    Peggy - I had that 'restless leg' feeling also and couldn't sleep.  In fact, it was more like 'restless body' syndrom.  All of my muscels felt weird.

    I'm going to talk to my MO about icing fingers and toes.  Two of my fingernails on my right hand are feeling sore and have dark spots on them.  I think I might be in trouble with those two nails.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2012

    Peggy:  I'm getting six bi-weekly dose-dense Taxol treatments are part of a clinical trial to determine patients actually need treatment every week.  It's the "convenience factor."  I cannot imagine having to go every week for 12 weeks - how do you all do it?

    Janet:  It *is* kinda creepy how closely they watch you - but reassuring, too.  I was so scared beforehand that I started to cry a little and Julia, my favorite nurse, sat and held my hand and told me about the reactions she's seen over the many years she's been there.  The worst one was a woman who's throat was sore - but didn't close up.  No one had every stopped breathing.  A couple of people itched, and one broke out in hives.  In only three cases had they had to change someone to another taxane like Abraxane or Taxotere.  It helped me immensely to know that those reactions are really, really rare, and they do everything they can to make it easy.  Which is why I came home at 2:00 and slept until 6:30 - so much benadryl!  :-)  No steroids to take at home, though, which is weird.  Not complaining tho!

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