Starting Chemo February 2009?

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Hi everyone,

    Hope ya'l had a good Easter or Passover... whichever you celebrate.  I've been trying to stay away a bit to clear my head.  I'm really having a rough time of things (mentally anyway) .

    But, I did want to post for all of you nausea gals:  it *is* terrible.  I understand.  If you are moving on to taxol (or another "t"), it will get better, I promise.  For now, you have options.  A few that helped me: 

    Sancuso patch~ put on 24 hrs pre chemo and leave it on for a week. This helped me because I couldn't keep down pills sometimes.  Once I started using this, I needed to go in less frequently for IV fluids.

    Emmend~ Each one of you should be on this if you are battling nausea.  It works on a totaly different pathway in the brain that any other treatment and can be used in conjunction with everything else you try.  It works best when combined with Alloxi in your IV.  You can either get it in your IV before your infusion (I got it this way) or take it as a pill the morning of treatment.  Then, take it for 2 days post-treatment.

    Alloxi~ IV only, given as a pre-med.  Can be used with the other stuff.  Supposed to work for 72 hrs. I had it with every treatment so I don't know if I would have been worse off without it.

    Zofran~ I couldn't keep these down very often but when I could they helped.  They are given to be taken at 8 hr intervals but ask your onc about taking them every 6.  Mind said I could take up to 32 mg per day for a few of the worst days (this was before we got to the patch).

    Marinol~  It baffles the mind why oncs are resistant to giving this out. It isn't as good as zofran, kytril, or the patch (these work similarly in the brain) but it can be used with everything else.  I found that it helped me to sleep through some of the nausea and it made me eat better even when I was sick.

    Ativan~ 1mg every 8 hrs did wonders for me on the bad days.  It will make you sleepy but again, sleeping through bad nausea is a good thing.  This also works differently so you can add it on without worrying about combining too many of the same types of meds.

    Kytril~ didn't take this one because it needs to be given frequently and I went to the patch which is the same drug (but different delivery). So, if you get the patch, don't take this.

    Anzemet~ This is a 24-hr zofran like drug.  I took it while using the patch and Emmend (and marinol and ativan).  I might have helped...maybe.

    Phenergan~ Didn't help me much but can be added to the other stuff (another different pathway in the brain).

    Compazine~ Never tried it.

    I'd also recc getting a full L IV of fluids the day of your infusion.  And, I had to go in the next day for another 1 L.  If you go ahead and schedule it, it isn't a big deal.  At the time, I was getting neulasta at 24 hrs anyway so I just planned to stay for a couple of hours.

    If your insurance gives you difficulty with paying for any of these, you need to get a diagnosis code for "hyperemesis" on your chart.  Your onc can add it.  Then the office may need to call the insurance to say that whatever med you want/need is "medically necessary".  Also, the patch is relatively new so many oncs have (or can easily get) samples.

    I hope that helps some of you.  Nausea can be soooo terrible.  

    I miss all of you! many {{{hugs}}}

    Michele

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  • xpectmiracles
    xpectmiracles Member Posts: 439
    edited April 2009
    Hi Michele! I am so glad to hear from you. Now you are not only our vomit queen; but pharmacy consultant, too! Smile (((hugs))))
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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Have to read all of the above still... but just wanted to share with you ladies.. my onc.'s office just called and my tumor markers are now BELOW NORMAL! phewwwwwwwwwww!  why do they make you worry so much?!?!?

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  • apple
    apple Member Posts: 7,799
    edited April 2009

    great news Susan..

    Michelle - glad to see that you've posted.  I've been thinking of you.. hoping you feel better.  Feeling awful has to such an extra challenge.

    Hang in there.  you'll be smiling soon. 

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  • xpectmiracles
    xpectmiracles Member Posts: 439
    edited April 2009

    woo hooo, Susan! That's great news!!!

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2009

    Oh Susan that's wonderful news :)  I am beyond thrilled for you.

     Now go get your Tan :)

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Thanks!  I am very relieved. Onc. still wants me to go for the ct scans, bone scan and pet scan.  I tried to talk my way out of it, but couldn't. Guess he just wants to be on the safe side.

    Just read most of the posts, I have 2 words CHEMO SUCKS.  Sorry for everyone who is going thru nauseau.  Michelle, on your list, read the side effects of the companzine before you or anyone else tries that one.

    I sure wish that I could say I feel normal going on 5 weeks out of chemo, but man that stuff must be so toxic cause I am still feeling the s/e's.  On a good note I was actually able to walk a few miles yesterday morning. I think that's one of my problems is that I am not exercising, so I am going to try and walk a bit every day, even if I have to force myself.  Just wish the weather would get nicer!

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  • BandanaGirl
    BandanaGirl Member Posts: 11
    edited April 2009

    Thanks Michele for the helpful list of drugs...Good to know there's more out there if I need it..

    I hope this won't confuse everyone too much but I wanted to change my username...

    I've been living in my bandanas...and the new name just felt better...

    I had my Taxol on Thursday, Neulasta on Friday...good day yesterday..but today I'm dragging.  Funny thing is though..I probably had more pain yesterday but maybe it is wearing me down today. I'm really looking forward to taking my Ativan and getting comfy in my bed this evening...It's cold and windy and it will probably rain this evening and that really sounds relaxing..Of course, beautiful, warm weather is coming this week and hopefully I won't be so achy as the week goes on..

    I hopeeveryone had a great holiday...

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  • BandanaGirl
    BandanaGirl Member Posts: 11
    edited April 2009

    Sorry, I forgot to write my other Username....

    TravelGal is now BandanaGirl!

    WalMart sure has a great selection of bandanas!

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  • Bethie1
    Bethie1 Member Posts: 393
    edited April 2009

    Hey gang!!  Hope my fabulous furry friends/"sisters" are doing OK, now!!! Knock on wood my SE's from AC weren't too bad; just fatigue and queasy, but now that I've been given a benadryl pre-taxol, and have 1 Taxol treatment in me, I'm feeling more fatigue/dull muscle ache/slightly arthritic on Taxol more than the AC.  Anyone who's feeling pain/achy/etc, if possible get your feet up and take an Advil or Tylenol.  This has worked for me so far.  ((((HUGS)))

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2009

    Hey there guys - just a quick hello. I have been in the hole the last two days - couldn't get out of bed. I managed the Easter Egg Hunt on Sunday and then it was all downhill from there. But, I am up this morning, and hoping to feel better. Just wanted to check in and send everyone hugs!

    Susan - wonderful news.  Told ya!

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Kerry-Are you almost done with your tx's?  Glad to hear you were able to do the hunt... when it comes to our kids I think we are definitely superwomen!

    I slept a little better last nite, only had 2 hot flashes (opposed to 5)!  Took an ativan before bed, I wonder if that helped at all. But how long can we continue to take drugs to help us with this and that... I feel like an addict sometimes!

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2009

    Yep, last Chemo on the 30th April! It's getting so close, I can smell it....

    Glad you slept better, I can imagine the weight off your mind. I love how we take pills for the SE's of the pills for the SE'ss of the Chemo. Pills, pills, pills.

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Great news Susan!!!!! What a relief!!!!

    Kerry, I'm glad you posted. was worried.  Jeez, 4/30... I'm so jealous.  I'm not done till 6/18.  I honestly don't know how I'm gonna do it.  Cry

     I posted a new thread about a jugular thrombus... ANyone have one of these or have to get checked for one?  Seems I may have one... I'm really stressed about it.  I have to go have a doppler of my neck veins today. <sigh>

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited April 2009

    Michele~ I am thinking of you this morning I hope your doppler goes okay. 

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  • SherylAnn
    SherylAnn Member Posts: 1
    edited April 2009

    Hi Everyone.. I wish I had seen this group in February when I started chemo.  It would have helped.  Oh well.. better late than never!

    I had a mastectomy and reconstructive surgery on January 7th, and I started chemotherapy on February 18th.  I was supposed to have 4 treatments of a/c, and 4 treatments of taxol, every other week.  At my last treatment (2 weeks ago) my doctor actually dropped the last dose of a/c because I was handling it so badly.. physically and emotionally.  I was feeling so awful ALL the time.. which didn't help my emotional state!  I kept waking up every morning hoping to feel a little better, but I didn't.  So she switched me to taxol.  For the first week or so after, I had such leg pain I didn't know what to do.. but it has faded a little bit.  I am really tired.. but I don't feel horrible like I did with the a/c.  I can function and I almost feel human!  But now I am getting a little nervous... I am going back tomorrow.. and I have read a lot of things online (should NEVER do that!) about the taxol joint/muscle/bone pain getting worse .. and even being permanent.  I know I shouldn't worry yet.. just a little nervous.

    Anyway I am finally seeing the light at the end of the tunnel.. my last treatment will be May 13th..   I am counting down the days...

    Can't wait to grow hair again..  can't wait to feel a little normal again. 

    Good to have somewhere to vent all of this stuff.. to people who just might understand!

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  • apple
    apple Member Posts: 7,799
    edited April 2009

    welcome SherylAnn

    the taxol got better for me.  ask your onc about painkillers.  my onc prescribes this hydrocodone stuff that blocks the brain's perception of pain.  it's fairly low dose = i can take six, and i get by with 2 a day.  it helps IMMENSELY.

    Michelle - thinking about you today.. hope all goes well.

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  • jancie
    jancie Member Posts: 2,631
    edited April 2009

    Welcome SherylAnn - I am going to start my first Taxol on Wednesday and I am dreading it!  I will definately be on pain meds if needed.

    Michelle - let us know how it goes for you today!

    I finally started feeling somewhat human yesterday so I spent some time out at the barn with my horse.  I am going out there today to meet the vet as all the horses are due for spring shots and I have to halter and hold 40 horses for shots today.  Whee.....now how did I get to be the lucky one?  Oh yes.....because I started coordinating this 2 years ago since some owners were negligent on keep up with their horse's shots and those horses would get sick and in turn my horse would get sick because she has a compromised immune system so now they depend on me to coordinate and do this every spring and fall.  I am going to be exhausted by the time I get home.

    I still have my eyebrows and eyelashes and I am 2 weeks out from my last A/C treatment.  Has anyone kept their eyebrows and eyelashes after A/C and also through Taxol?

    My cat was rubbing her face up against my head last night because I still have stubble left from when I had my head shaved over 4 weeks ago.  She discovered the stubble and thought I was a scratching post for her face.  She ended up taking over my pillow last night.

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  • living4today
    living4today Member Posts: 215
    edited April 2009

    Michele, 

    Thinking of you today and hope the test goes good. 

    So, I had a dream about my hair growing back...my last tx is 6/25....so I have a lot of dreaming to do!  I am just hoping I make it through chemo...insurance did approve abraxene instead of the taxol, due to my reactions from either the premeds or taxol.  I will still have to be admitted for this weeks treatment, thinking that I might as well try out every room on the oncology floor:)

    Thank you everyone for continuing to post...although, I wish none of us were here, it is so nice to know that we are not alone on our journeys!

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Great news!!!!  No clot!!!!  I feel so much better.

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  • susan13
    susan13 Member Posts: 732
    edited April 2009

    Michele-Wonderful news!

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  • living4today
    living4today Member Posts: 215
    edited April 2009

    Michele--Awesome!!!!

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  • xpectmiracles
    xpectmiracles Member Posts: 439
    edited April 2009

    Welcome, Sherylanne! It is great to have this group to talk with. We all understand whatever you are feeling. You are not alone.

    Jancie, your story about your kitty is funny! My kitty is my constant companion when I am bedridden after a treatment.

    Michele, I'm so glad you veins are clear!

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  • Artemis
    Artemis Member Posts: 759
    edited April 2009

    susan ~ I'm so glad you're feeling better and got good news.  I'm beginning to feel like a drug addict, too.  I was already taking a boatload of stuff before all this cancer business; now I believe I could open up my own pharmacy, haha!

    Michele ~ Hallelujah!!  Hurrah for no clot!!  *dancing*

    SherylAnn ~ welcome to the Fabulous February Furies!  Ask your onc for pain meds for the Taxol pain.  Ask for anti-anxiety meds, too, if you don't have any already have something; they help!  Just ask the ladies here; most of us are using Ativan or Xanax to deal with nerves, nausea, scary late night thoughts, etc.

    jancie ~ I've lost about, meh, half my eyelashes after 4 A/C and 2 Taxol.  My eyebrows are still ok.  That's funny about your cat!

    Hugs to all,
    Artemis

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  • jancie
    jancie Member Posts: 2,631
    edited April 2009

    Hey Apple......come here!

    Remember me saying that my oncologist gave me something for neuropathy?  It won't prevent it but it helps with the symptoms.....Gabapentin - 100 mg taken 1 x per day at night.

    I am heading to Target to get me dreadazone, lortab and gabapentin for tomorrow's taxol treatment.  I am also filling my VALIUM which I am going to really need in the morning.  I don't know why but I am scared to death of Taxol but wasn't like this when I got the A/C.

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Jancie~ Taxol is easier than AC... I promise.

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  • jancie
    jancie Member Posts: 2,631
    edited April 2009

    MicheleS - they are pumping me full of steriods - I hate steroids!  They want me to take 20 mg tonight and 20 mg in the morning.  First off how in the heck am I going to sleep and then I will get this round puffy face, will eat everything in site and gain back the 10 lbs I lost last week.

    I am also scared of getting neuropathy!  I can deal with the leg and joint pain - I got lortabs for that Laughing

    Is the dexamethazone for nausea?  Do you take any nausea meds on Taxol?  They said I would be in the chair for 5 hours!  My A/C treatments only lasted 3 hours and I thought that was forever!

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  • gcpommom
    gcpommom Member Posts: 883
    edited April 2009

    Michele:  I am glad you do not have a clot.  I hate taking blood thinners, and am glad you don't have to deal with that.  How are the Taxol treatments going for you?  I had my 3rd today.  My docs are happy with my treatments so far, and so am I.  

    Jancie:  wow, that's a lot of steroids!  I get 20mg as a premed for Taxol, but that's all.  Probably because you're getting dose dense, more T requires more steroids?  I get nothing for nausea, but have read that the steroids do help with nausea.  5 hours is tough, :(  If it makes you feel any better, there was a guy getting his first tx today at my hospital who was getting infused for 8 hours.  Bring a laptop, take a nap, do some puzzles? to help time go by.

    Web:  congratulations on your last treatment; you take as long as you need to get back into life, screw everyone else (I saw your other thread, awesome stuff there!).

    RANT:  I saw my onc today, and left the office feeling rather angry.  I hate to even ask questions, or mention something I read online here, because I get "the look", the one that makes me feel like I am crazy or stupid for asking.  I don't want to switch doctors this far in, and honestly, it is the PA who bugs me the most, she's very business-like and not the type you 'bond' with during tx.  I see her most often.  Sigh.  Now they don't think I should get the BRCA test (my sisters and daughter want to know if this is genetic), and said that most likely it is not genetic.  How do they know???  I have no idea of my family history, since my dad had 13 brother/sisters, and we haven't kept in touch with hardly any of them. 

    Then, she was perturbed that I started taking B6 and L-glutamine, calling it "neuropathy voodoo".  Gee, that's why I didn't ask them about it in the first place, I knew that they would react like that.  They are very minimalist in using extra medications, and think that I should just breeze through everything with no problems.  Well, if I can ward off neuropathy, it's worth a try and doesn't hurt me, so whatever!

    Oh, just a sidenote here---while I am slowly losing some eyelashes/eyebrow hairs, my hair on my head is making a slow comeback!  No fuzzy stuff, just regular hair growing, not so much on the very top, but everywhere else.  My nurse today said that happens while on TAxol, and it will stay, not fall out so I am excited!  I still look bald, of course, there's not that much growth yet, but it's a start!

    Here's to a good week!  Here's to spring getting here soon!  Here's to us!

    big hugs to everyone!

    Judy

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2009

    OMG Judy, you have HAIR growing!! Oh, that is wonderful news. I was just thinking last night how I am so tired of being bald on top of everything. You just kinda get used to it, but it sure will be lovely to actually have the real stuff growing back again. I miss brushing it. I am thinking I will be ready to ditch the headcovers in September, maybe I am being overly optimistic. As for the eye hair - my eyebrows are really really thin. At least they will grow back really fast though as they are so short. I am still quite fluffy on top - never got that baby-bottom look.

    Sorry you have such an unhelpful PA. I only ever see my Onc, I don't think we use PA's in Canada. Mine is lovely, very understanding, and not dismisive of "nonmedical" things. She is really young which I like, but as you say, it isn't worth you switching at this late stage. Just think - pretty soon you will only be seeing her every few months.

    So, I am still a bit achey, but really feeling mostly OK. Now I will just feel a bit off for probably another week, blek. So glad when this is over. For anyone starting on the taxanes - try not to worry. It is a different experience but you got through one type OK, you can get through another. The worst I have found is the pain, but at least I didn't feel nauseous. And a lot of people have no pain - 50% I think. I have had no neuropathy at all, or any other problems.

    Anyway, keep your chin up! Think summer is finally coming here -  we may even get above 10C today!

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  • MicheleS
    MicheleS Member Posts: 937
    edited April 2009

    Jancie~ I still get nausea meds but that's not the norm.  I get emmend and alloxi in my IV the day of treatment and take emend for 2 days after.  I *still* vomit some but it is nothing like the all-day, all-night (painful) nausea with AC.  I only get 10 mg of decadron in my IV and that's it... But, I have a stomach ulcer and you can't use lots of steroids with that...

    Kerry~ Glad to see you!  I'm sorry you are having so much pain.  Does it linger? Or do you wake up without it one day?

    Judy~  I've found the SE of T to be easier.  I just HATE that it goes on for so long.  I'm sorry that your onc has a bedside manner that is lacking.  Sometimes I think that they forget that the patient doesn't view BC like they do.  My onc did recc B6 to prevent neuropathy (100 mg twice daily) and said that he learned about it during his residency.  He wasn't terribly keen on the l-glutamine but said that it wouldn't hurt.  Oh... my head-hair is sort of growing too but only some of it.  I look like a freaky, fuzzy, buzz-cutted troll doll! However, my eyelashes are jumping ship.

    I wanted to update ya'll on my mental-issues... I started seeing a counselor and it has really helped me to stop wallowing and to start grieving.  I really feel blessed to have found her.  As I was sitting there telling her how I was sure I'd get brain mets, etc because of being tri-neg she pauses and asked me if she could share something.  She was a tri-neg too! And is FINE! NED for 3 years.  SHe also has a degree in statistics and she and I went through all of the "data" with her teasing it apart for me.  When you do it that way, it doesn't look so bad.  It felt really good to see her functioning so well regardless of her diagnosis... I also confided in her about the 1 onc who told me I would die from this... We talked a long time about that and how *that* was the conversation I was replaying in my head for some reason.  I'm supposed to work on replacing *that* terrible conversation with a different one.  Anywhoo, I'm still having more bad days than good but I'm working on things.  Oh, and I'm walking everyday even when I feel bad (thanks Apple!).  The weather is 70 and BEAUTIFUL so that's been helping.

    I go to see the plastic surgeon today over lunch just to touchbase.  Still thinking next fall for my other mastectomy + recon of both but he wants to see me every couple months or so while I'm in this holding-pattern. He has a TERRIBLE bedside manner but I hear he does the best boobs in town!

    {{hugs}} to everyone.  

    Michele

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