Starting Chemo October 2012

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  • fight4two
    fight4two Member Posts: 146
    edited November 2012

    Poke!! The reactions of you and that woman in your chemo room scare me!!! I'm nervous to move onto the next drug! At least I know what to expect from my current cocktail.



    I really hope that abraxane is the answer for you and NO SE'S!!!

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  • MsTori
    MsTori Member Posts: 402
    edited November 2012

    Poke- my goodness! Your chemo room really sees some action. It would scare the heck out of me! God Bless you girly! You are strong. You will get thru this. Emmend, the best icing on the cake! Yay! So glad your getting that now. I don't know much about the difference between the two chemo drugs- go to triple positive board. I can almost guarantee the ladies there will know! Praying a peaceful night for you tonight. :-) hugs

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  • fight4two
    fight4two Member Posts: 146
    edited November 2012

    So in preparation for my bone scan tomorrow, I said I just wanted to confirm that me being radioactive wasn't going to be an issue for my baby. The lady comes back and says I simply need to stay 3 feet away from my baby at all times for 24 hours and then it shouldn't be a problem.  Great. Needless to say, I canceled my appointment!!!  Good thing I asked a second time.  I hope there was nothing dangerous in my CT scan!

    OK. Just wanted to rant.  Back to other worries.  Hope everyone is having a good day with minimal SE's.

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  • alcb70
    alcb70 Member Posts: 166
    edited November 2012

    Hi Poke~ No he didn't say that it was weaker...just that I was doing so well on the Taxotere.  He mentioned that he hadn't used Abraxane in a while & would have to look up with my regimen. I still can't imagine how the Taxotere landing you in the hospital didn't warrant an over-ride with your insurance!  Keeping my fingers crossed that the company kicks in the help! Chemo is crazy expensive! How scary that that poor person had a reaction! That's what I feared SO much when I started this. I was so nervous about having SOB!  I hope that you do well with this. I need to look up the studies also. I had Taxotere today, so I'm hoping the neuropathy isn't as bad. I thought about icing, but I fall asleep so quickly...there's no way I can do it.  They gave me both nausea meds my first time...hope it works well! :) Keep us posted!

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  • PatinMN
    PatinMN Member Posts: 920
    edited November 2012

    Poke - re your abraxane coverage, you've probably already done this, but I've read/heard that insurance companies often change their minds upon appeal by the doctor.  Nurse friends have told me that a written letter from the doctor can make a difference.

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  • halfcan
    halfcan Member Posts: 253
    edited November 2012

    alcb70- did you do the carboplatin first for x amount of weeks and now Taxotere by itself? I will be on Taxotere by itself for chemo 4-6 and am curious about the nausea meds. My MO only has given me a script for the steroid and Nuepogen injections for those infusions. He said nausea isn't an issue on Taxotere??? Do you find that is true? Anybody else?

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  • Poke
    Poke Member Posts: 225
    edited November 2012

    Thanks for the appeal info; I already know all about it and they said it's a no-go. I appreciate your concern everyone!! 

    How do IV steroids make me so sleepy! I took a nap when I got home, my first nap since I left the hospital. 

    I had been taking B6 and B12 since before I started my treatment in anticipation of neuropathy. I had purchsed glutamine powder but only broke down and started it two nights ago because my left hand was totally numb must of the time. I'll let you know if it helps. I know MsTori uses is, but I didn't want to use it until I actually knew there would be an issue. 

    Love you all, xoxo

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  • MsTori
    MsTori Member Posts: 402
    edited November 2012

    Poke- B6 is most important, but 30g powdered L-Glutamine (10g 3 times/day dissolved in drink), and 1500 mg Acetyl L-Carnitine. I break that up throughout day too. All at GNC.

    Also, they must be giving you something else with the steroids to make you sleepy. I get Emmend, benedryl, dexamethasone, and Ativan. Yawn.

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  • BethBV
    BethBV Member Posts: 49
    edited November 2012

    Round two tomorrow for some of us!

    I've noticed that my hair has stopped falling out now.  I now have a very, very thin but even layer of 1/2" long hair plus a few more-filled-in areas behind my ears and at the base of my neck.  I've been wearing the wig for work meetings, times with I'm in contact with the public on a professional basis.  But I've gotten to the point that I'll wear a "skull cap" with a baseball-style cap over it.  My 13-year-old is even okay with it.  She says, "You look like you're doing chemo.  But you are so it's fine!"  Getting more comfortable with the "chemo look".  Oh, the few hairs I have left seem to be holding solid, they don't pull out easily or painlessly.  I wonder if my hair will fall out completely in a couple of weeks (Days 14-16 of chemo #2)?  My eyebrows and lashes are also a thick and long and dark as ever.

    Tastebuds seem to be coming back a good deal although water and carbonated beverages still taste "off" . . . not horrible anymore, just a little "off".  Iced tea with hibiscus is my favorite thing to drink right now.  Other foods taste good again . . . had some pepperoni last week that I could have sworn had "turned" but my husband said, "The pepperoni is fine.  Your tastebuds are "turned"!"

    Otherwise feeling great.  They didn't do the neupogen or neulasta with me since I'm on the every-three-weeks dose dense treatments and my blood counts were just dandy before my first treatment.  I'm expecting them to be fine tomorrow but, if not, the MO said he'd inflict the shots if I need them.

    I get to have whatever I want for dinner the night before chemo.   Tonight I choose some fish & chips!  Off to dine!  Catch you after chemo tomorrow!

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  • melissa119
    melissa119 Member Posts: 172
    edited November 2012

    Hello ladies! Hope everyone is doing great with minimal side effects! You will all get thru treatment faster than you think! I just finished my last taxol treatment ( 12 total) today after I did 4 AC treatments first! I officially got the "you are done with chemo!". Now I go for 3 month follow ups with MO.



    I have seen you guys asking and commenting a lot on eyebrows and eyelashes. I started treatment in June and lost my hair about two weeks later. My eyebrows and eyelashes were holding on and I thought they were to stay. I did 4 biweekly AC and 6 weekly taxol before they started coming out. I lost all eyelashes and most eyebrows. Had to use clever makeup to paint on eyebrows and just used more than usual eye makeup. My friends said it looked great. So although it is really difficult especially so far into treatment it can be covered with makeup. Oh and a couple days ago I finally saw some regrowth of both so it does not last long! The hair too. For those doing taxol mine started growing back around treatment 7. So hang in there!!!

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  • Poke
    Poke Member Posts: 225
    edited November 2012

    No Benadryl or Ativan for me!

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  • BethBV
    BethBV Member Posts: 49
    edited November 2012

    Did they decide it was the Ativan or Benadryl that you were reacting to rather than the Taxotere?  Ugh!  How frustrating for you to be denied coverage for the Abaxane and then to have no Ativan or Benatryl.

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  • BethBV
    BethBV Member Posts: 49
    edited November 2012

    I sure wish I'd found this site before I bought that wig!  http://www.hatswithhair.com/  What a great idea for those of us that spend a lot of time on our bicycles or our skis!

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  • Toots
    Toots Member Posts: 104
    edited November 2012

    Glad I got to reply nurse arrives at 9:30 to give me my chemo this morning, was such a mess last time didn't even switch on the computer for 3 day.........

    www.bohemiaheadwear.co.uk

    ...........can't drink tea, makes me sick, always has, been drinking fruit tea - favourite blackcurrant and ginseng - but they contain no caffeine at all!

    ....diet coke also tastes awful.........

    ........think I may get over the caffeine headaches eventually just wish I could have weaned off slowly!

    ...it is great having treatment hospital just arranged it for me but much more confortable then I would have been at a hospital.......so much more relaxing but still stress on the day............catch up with all after todays treatment <3

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    Marlene - love the new wig! 

    Poke - sorry that your dealing withinsurance problems. Hopefully, the company will work with, but if not, have you looked into the Patient Advocate Group (or possibly foundation). They have grants that can help with chemo cost, but it is based on last year's tax return.  I got denied for making too much money in the year without chemo, but it would be worth a shot.  My oncologists office is who filed the papers.

    I definitely seem to be losing more taste daily, but I've found that in week 2, well-done burgers taste good.  Had a whiskey river barbeque burger from Red Robin (without any raw veggies & on a spinach wrap instead of bun) yesterday for lunch, and it tasted AMAZING! Like someone else mentioned, I need to eat more at lunchtime.  By dinner, I'm not hungry and really don't want to eat at all.  Anything diet is a no-go for me, but regular cokes & ginger ale still work along with very diluted peach tea crystal light. By this time of week 2, I can do water again too which is helpful.   Peanut butter m&m's have always been a stress/comfort food for me, but they disappeared for me this week & taste disgusting.  It is crazy how differently all of us can be affected by this, but at least we know it will end.  I can live without eating my favorite foods for 2 more months if it means this stupid stuff shrinks.  

    My plastic surgeon cleared me to do any cardio & lifted my "walk but don't sweat" restriction so I'm hoping to get to the gym today.  He doesn't want me doing anything repetitive with my arms, but it will be nice to get out of the house to do something more than I've been able to in the last 2 months! 

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  • Poke
    Poke Member Posts: 225
    edited November 2012

    The poor ACT girls are having a terrible time with taste :( I'm so sad for you guys.



    No Benadryl because that was only for my first dose of herceptin. No Ativan because I don't need it. And if Abraxane denies me, well it's my life and I'm not taking any chances - if I manage to tolerate it, I'll put that shit on my credit card and pay on down over the next 70 years as I plan to still be alive :D



    Love to all xoxo

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  • BethBV
    BethBV Member Posts: 49
    edited November 2012

    Hooray for sweat, nbnotes!  I've been trying to get out at least for a walk every day.  Some days it seems tough to do a mile but most I can manage a nice 45-mintues to an hour.  I need to get back to the gym where I can get some light lifting in and time on the bike or in the pool.  The fall weather has been splended for walking though (we hit 75 yesterday) and I know that winter is coming.  At least I hope winter is coming, as I'm anxious to be in shape to strap on my skis and head for the mountains!

    Love the attitude, Poke!  So glad the lack of Benadryl and Ativan are because they're not needed rather than not tolerated!  Hope the Abraxane treats you very, very gently and the cancer very, very harshly!!!

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  • CelineFlower
    CelineFlower Member Posts: 875
    edited November 2012

    Hello Buds!!

    Went for #3 yesterday... 1 to go and im half way thru!

    The best news of all is , the evil little shit (tumor) dropped in size from 3.7 to 2.5!!!

    soooo good to know the chemo is working!

    I was a bit worried with this treatment because this time when they hooked up the port , i was not frozen...

    And having read so much about women here using the Emla cream... I was a little worried because my team said they dont use it here

    So... to be honest... it felt no worse then a regular IV prick...and when she took it out... i didnt even realize it was out!

    It was soooo much better then the regular IV... my veins "explode" and the thought of having to interupt the treatment to redo an IV was to much.. so I am very glad I agreed to the port surgery

    I find our treatment room to be very crowded, this time i was in a chair right next to the nurses station... made me feel a little exposed.. and hard to relax. It must have been quite a different experience before all these great anti nausea drugs... i can just imagine all these patients close together and being sick...

    also had a bit of a vison, as i was sitting there in the chair... all these patients... all these nurses doing their jobs calmly. The patients were the elephants in the room...it was funnily sureal

    One thing that i am pleasantly surprised by is the attention the pharmacist gives you... she comes to see me every time pharmacist ... has even printed info on various subjects like Vit D for me to read..to be honest she is more involved in my case then the oncologist seems to be..

    So the next treatment is the 26th... and it is the last of my first cycle... they told me yesterday that the first cycle, A/C, is the most dangerous ... it is the stronger of the two and puts me  at higher risk for infections etc. Having sailed thru this without to many SE's (side effects) , i feel confident that my body is responding well.

    Second cycle,Taxol, starts Dec 19th,given weekly. Which means I wont be participating in much this christmas..as my second treatment will be dec 26th. ...the second cycle being weekly i dont think ill have time to recoup strength.

    Was a rough night last night , felt quite nauseous ..i think its because of my stomach being empty... i am going to make little party sandwiches.. love those.... with some duck eggs i bought at the market... which btw have alot more proteing the chicken and if you cannot eat chicken eggs, then will more then likly be able to digest duck..

    hoping you all find your purple bubbles


    My love to all

    celine

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  • schoolmom
    schoolmom Member Posts: 458
    edited November 2012

    Morning ladies.  Day 4 after initial tx.  Last day to pop steroids.  Yesterday I was able to eat a little...went to a get together for 2 hours in the evening and ate some brisket and fruit and smallpiece of cake....I could actually taste them.  I have been gargling with salt water a couple times a day and brushing my teeth/tongue frequently.  The flush on my face is gone.  The bloating was bad yesterday but gone. 

    I am back to my same pre-tx weight after losing all the fluid gain from Monday.Still hard to find anything appetizing. 

    Poke hope you are feeling OK.  Sounds smoother than the first time. 

    Going to try to go out and walk a little.  Weather here in Houston is great...80 today. 

    Hope all are resting a making it through the day.  Hugs

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  • sonson
    sonson Member Posts: 162
    edited November 2012

    Halfcan-can't help you with your questions since I get cytoxan and taxotere at the same time.  I do get the anti naseau meds as well, and they are needed, but I don't know which chemo med is causing it.

    MsTori-can you please give us all the dosage and the vitamins for the neuropathy prevention?  I know you may have said it before, but next week I get my fourth treatment and I've noticed tingling in my hands and feet and I think I need to be prepared this go round.  And does any of it make you more sick to your stomach?  My onc put me on some potassium pills because my potassium levels were low, but they are really doing a number on my stomach.  I think I'm going to have to go off of them when I do the chemo next week. 

    Thanks Melissa for letting us know about the eye brow/lashes stuff.  I know there's a real possibility of losing them and I really don't want to lose them.  I'm hoping that icing them will help me not to lose them.  Kind of like the polar caps idea.  I don't know if it will work, it's just a theory I have.  But I'm going to test my theory and see what kind of results I get.  It can't hurt other than make me cold.

    Nbnotes/BethBV-I try to exercise most of the time too.  I think it helps with the fatigue.  Do either of you know if you can lift weights with a port in your arm?  My port was placed just above my elbow not on my chest.  I used to do a class where we did really light weight but lots of repetitive use.  So maybe five to seven pounds would be used for bicep curls but we would do curls for like 3 to 4 minutes.  Do either of you have port and do this kind of thing?  Just wondering....  I did ask the radiologist about it when he put it in and he seemed to think it was fine to do, but at the same time I wonder if he understood what I was talking about.  I was kind of loopy with drugs and may not have explained it very well.

    Sorry Toots you can't at least drink tea.  I wonder if those tiny little energy things would work?  Aren't those caffeine laden?  Just a thought.  I know I hate the headaches, but then again I get migraines a lot so...  That's just me.  If you can stand the headaches then might as well go cold turkey on the caffeine.  Might even be good for you!

    You know what's strange about my taste?  Is that I'm finding that I like things that I used to hate.  Like bananas and green peas.  I used to hate the taste of those and now I don't.  So I guess the change in taste isn't ALL bad!  My husband keeps making me try things that I used to find disgusting.  He's having way too much fun with it too! 

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  • MsTori
    MsTori Member Posts: 402
    edited November 2012

    SonSon- I can't take credit for this, it was shared with me, but here it goes. And always get ok with your MO first. Mine didn't care. 30g of powdered L-Glutamine (10g 3 times a day dissolved in a drink) 1 cap B6 (mine are 100mg, but I wasn't told how much and MO said ok), and 1500mg of Acetyl L-Carnitine( I try to take space it throughout day too). I do this for a week after each chemo. The L-Glutamine doesn't dissolve well, so I put it in cranberry juice and stir it up and drink it down with a straw, real fast. Lol! Bleh!

    And be careful with your potassium. Let your MO know if you plan to stop it. It plays a big role for your heart.

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  • Poke
    Poke Member Posts: 225
    edited November 2012

    One of my co-workers (another pharmacist who went through this last year) said 15g twice daily was ok on the L-glutamine, so I've been doing that since it tastes chalky to me.

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  • BethBV
    BethBV Member Posts: 49
    edited November 2012

    Sonson - Hey!  I just realized your comment on taste is true!  I hate banana-taste and avoid banana nut bread and fruit salad w/bananas.  Ick.  Yesterday at a meeting they had a choice of oh-so-white blueberry muffins or whole-wheat nut muffins.  I'm not a white nor blueberry fan so I chose the wheat nut muffin.  It had a unique flavor to it that really tasted so, so good!  It was no ordinary muffin.  Your comment made me realize that the unique and wonderful flavor was banana!  I hate banana nut muffins . . . well, three weeks ago I hated them!  LOL!

    I can't answer the lifting with a port in your arm.  Mine is in my chest so I'm okay to lift.  I'm working on very light lifting though, with the arms, since I've got these danged tissue expanders and then the node dissection pain/numbness/scarring/etc on the left side.  I'm working on range of motion without displacing the tissue expanders!  It still feels really funky to have muscles on the outside of my boobs.  I imagine people seeing my breasts jumping around as if they are my pecs (which, of course, is exactly what they are)!  Eeew!

    My MO's protocol for Neuropathy Management is (Days 0 - 5):  Vitamin B6 100 mg twice per day  + Glutamine 30 grams per day, divided into 2-3 doses + Avoid extreme hot and cold temperatures.

    The MO has me on prescription dose Vitamin D right now.  50,000 IU's of Vitamin D3 once a week for 8 weeks as mine was low and 2,000 IU per day made it drop by one point.  Apparently it is super important.  My husband is now on a Vitamin K2 (in addition to Vitamin D) kick . . . I need to ask my MO if it's okay for me to add that.

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  • MrsCich
    MrsCich Member Posts: 409
    edited November 2012

    Hi all!  Haven't posted in a while.  Been busy with sick kids and life in general.  I went back to work for 16 hours (or less) a week and between that, treatment, appts, family, etc...who has time for the computer or reading in general!  lol

    Went to see my Oncologist yesterday, she said she really wants me to do the 6 treatments of TC rather than 4.  Not too happy about that because that takes it into the new year and completely ruins my holidays.  I have treatment 3 tomorrow and then treatment 5 falls on Dec 21 which makes Christmas as sucky as can be.  My last treatment falls on my anniversary weekend.  Frown  My MO also said she wants me to have an oophorectomy after I'm done with treatment.  Sigh...what's one more surgery I suppose. 

    I go see my PS today to get the stitches out from my wound closure surgery which I had Oct 17.  He didn't want to take them out sooner because he was afraid the chemo may have slowed my healing time and didn't want the incisions to open up. Still only at 450cc in each side and only had one fill.  I feel like I'm back in the waiting game and that's kind of depressing.  I want to feel like things are moving right along.

    On a side note, I have had no nail changes with TC, no neuropathy, or nausea!  HOPEFULLY, it stays this way. 

    Love to all!

    ~Kristie

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  • sonson
    sonson Member Posts: 162
    edited November 2012

    BethBV-that's exactly how I realized I liked bananas too...only it was banana bread.  My husband made some and he said just try it you may like it now...just try it.  So I did try it and it was the most delicious stuff I've ever had.  Still can't stand the mushy over ripe banana in my mouth.  Probably has to do with the consistency of it, but banana bread...oh yum!  Who knew???

    Thanks MsTori/Poke/Beth for all the advice on the vitamins for neuropathy.  So how important is the L-Glutamine?  That doesn't sound yummy and it's all I can do to get water down the first five days after chemo much less something that tastes chalky.  Seriously, I have to force myself to drink a glass of water so I don't dehydrate.  My mouth has this slimy feel to it and everything that goes in it has this slimy feel and I have a really hard time eating or drinking those first few days.  There's not much I can do about it.  I get through it.  I have a problem with slimy stuff in my mouth...as noted above.  I muddle through each treatment, but the less I have to put in my mouth that is unpleasant the better!

    Glad you are back MrsCich.  My treatment number six should fall just after Christmas which should make New Year's Eve really sucky!  I was hoping to have some champagne for New Year's Eve, but I'm afraid one that it won't taste good and two that I won't feel like wanting it because I'll already feel loopy from the chemo!  I was thinking of doing the oophorectomy after treatment as well.  I was wondering what are the advantages/disadvantages?  I'm done having kids.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2012

    sonson - I'm not sure.  I've been told not to lift any weights or do repetitive arm exercises, but that is more because the chemo I'm on is very likely to make the skin thin & then the scar break open.  Plus, I'm prone to skin infections so we are being as cautious as possible.  Sorry, I couldn't be more help.

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  • Poke
    Poke Member Posts: 225
    edited November 2012

    Yay, MrsCich!

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  • Poke
    Poke Member Posts: 225
    edited November 2012

    Did I mention my fingers are all peeling ... it's worse today - UGH! I have lotioned them every ten minutes since I woke up and had to go at them with fingernail clippers :(  I can still taste everything though so I guess that's my trade off.

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  • schoolmom
    schoolmom Member Posts: 458
    edited November 2012

    I have been using tea tree oil on my fingernails and toenails 2X daily. Found it at Sallys beauty supply.  Also, I take the L gultamine tablets cuz I found them at the grocery store and they did not have powder.  I guess its all the same.

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  • MrsCich
    MrsCich Member Posts: 409
    edited November 2012

    Sonson, my MO said having them removed will lower my chance for recurrence even more.  I do not carry the BRCA gene and I have no family history of BC but with my age (34 next Friday) she wants to stop the estrogen from production, as much as possible.  I will still be on hormone therapy for 10 years because she said estrogen is produced elsewhere in our bodies as well.  I too am done with kids.  I had a hysterectomy (they obviously left my ovaries) in 2009.  As for disadvantages, it will fastforward me into menopause but chemo and hormone therapy was doing that anyways. 

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