June 2011 A/C & T Groupies Unite!

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    I keep a a medical journal and a caringbridge journal. Both help. In the medical journal I write Day 1 and write down how I feel. Usually day 2 I start to get some nausea, but day 3-5 are the worst. I also write down the times I take any medication because I can't remember when I take them! I don't know if any of the meds work. All I know is that I'm not going to find out how I feel without them! Ugh! It's still doable regardless of the crappiness!

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  • Chava
    Chava Member Posts: 50
    edited August 2011

    To southhampton mom-

    The medical journal sounds like a great idea. What do you right in the caring bridge journal? I start my first round of a/c next week.

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    The caringbridge.com journal keeps my friends and family informed. It's my journey and thoughts. I also put all my questions in my medical journal. I keep adding to it until I have a doctor appointment, then I don't forget what I wanted to ask.

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  • kyroheal
    kyroheal Member Posts: 48
    edited August 2011

    Hey ladies,

    I was just wondering if anyone feels stomach pains? On the sides radiating to the back? I'm on day 5 of third AC and def feeling side effects but just wanted to know if anyone else felt this kind of pressure? I know there is alot of intestinal issues and AC irritates the kidneys but I'm a bit worried.

    Thanks

    Sandy

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Sandy - that pain you describe is worthy of a call to your oncologist.  Are you running a fever?  I wouldn't venture a guess as to what's causing it.  But I don't think it's a normal side effect.

    Hugs,

    Michelle

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    I also had some pain in my left side today. It was offf and on, but went away. It also hurts to swallow. No fever, so I'm not sure what's going on. At times, all the SE can drive me crazy. I have a echo tomorrow, then seeing the SO. I'm hoping this is the worst for all of us, and big healing coming our way.

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  • kyroheal
    kyroheal Member Posts: 48
    edited August 2011

    I don't have a fever either. Usually on day 4 or 5 my whole body aches, and it also hurts to swallow. I think it's just muscle pain in the neck. It's been pretty consistent all 3 times for me. I think I may be dehydrated and not drinking as much as I should. I just can't drink water. The feeling in my mouth has got to be the WORST side effect

    Thanks ladies

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  • Beaglesgirl
    Beaglesgirl Member Posts: 287
    edited August 2011

    Going in for taxol #4 tomorrow. I felt better this last week than I have since I was diagnosed in March. For those of you still struggling though AC there is a light at the end of the tunnel with the taxol.



    Blessings to all!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Kyroheal - I've said this before and I sound like a broken record, I know; but it bears repeating...drink anything!  It really doesn't matter what it is, drink whatever tastes good.  The more fluids you can push, the sooner some of the nasty side effects seem to fade away.  I think that is especially true for the nasty taste.  Are you sure you don't have mouth sores (you say it hurts to swallow)?  If so, you may get relief from the "magic mouthwash" that your oncologist can prescribe.  In the meantime, maybe milkshakes, smoothies or sherbert freezes will soothe your throat and go down easily.

    I am planning to have AC #4 tomorrow; hopefully my WBC will be in the safe zone.  I started taking a daily pre-natal vitamin that has folic acid and iron to deal with my low reds, but I don't think there is a formula to boost bone marrow cell production.  I must say that this third week has been a nice break from the side effects. 

    Have a great day, everyone!

    Hugs,

    Michelle

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    Praying for a go for you tomorrow, Michelle!!! I woke up this morning and the throat thing is almost gone. I've had it in the past, but not this bad. I know the feeling though. Should I call.....   Should I not call..... WTH? (((Kyroheal)))

    Thanks for the positive look into the future, Beaglesgirl. I am praying for an easier go on the Taxol/Herceptin.

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited August 2011

    I'm happy to report that I feel pretty good this morning.  I ate a scrambled egg, a cinnamon raisin bagel, & I even had a few sips of coffee!  I think I'm on the mend!

    Thanks for the thoughts, prayers, encouragement, & tips! 

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    Bobbijo, I've been pretty consistent. Keep a log and you'll know what to expect. Happy dance for you!!! Heading out for an echo this morning. Hoping that red devil didn't do any damage.

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  • shirleya
    shirleya Member Posts: 4
    edited August 2011

    I will finish my 4th AC tomorrow.  The oncologist says I will be doing 4 taxol weekly (lower dose) 4 times.  I am 11b 1 node involved each side.  I had a bilateral mastectomy.  Sorry I do not know how to list the other things.  I do not see anyone with just 4 taxol weekly.

    Thanks

    Shirley  age 62 alone and scared

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Hi Shirley!  You're not alone and we all understand scared.  I am having my 4th AC tomorrow, too.  And I had a bilateral mastectomy, so we have more in common.  And I am 61, almost the same age as you. 

    Welcome to our little group, and know that we are all here to help and support you.  I don't know about 4 weekly Taxols, perhaps your oncologist is using Taxol as a booster for you.  You can get that clarified tomorrow.  I think most of us are getting 12 weeklies or 4 every two weeks.

    Good luck tomorrow.  Hoping you have minimal side effects.

    Hugs,

    Michelle

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited August 2011

    Ok.  I thought I was on the mend.  I feel ishy again this morning!  I'm back to feeling as though I might get sick if I eat just the wrong thing & nothing sounds good to me.  I ate a waffle for breakfast, which was a mistake.  I'm on day #7.  Is this common???

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    I'm sorry you're not felling well. :( I forgot to take my prilosec yesterday (I've had reflux/GERD since I was a child), and I have been paying for it ever since. Looking at my notes, I can tell you that my first 2 AC treatments, I was able to eat day 7, but was sorry. I stuck to a few small pretzels here and there and felt better.

    Michelle, you on for today??? Hope you get a chance to kick some cancer butt!

    I had an ultrasound yesterday of the 3.3 cm tumor in my armpit, and it's a lot smaller. I still can believe that I didn't know it was there!

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited August 2011

    Rose,  glad to hear that the tumor is smaller!  Were you able to eat normally after about day 7 or so? 

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    Yes. Lightly for day 7 and 8. Nausea sucks. :(

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Rose - just got the word, I am on!  Counts are good and I'll be getting pre-meds and my hour of hydration in just a couple of minutes.  This one will soon be in the record books!

    By the way, I highly recommend those of you with low red counts think about taking a prenatal vitamin that contains both iron and folic acid (not all prenatals have both, so read the label).  I started this after last week's labs showed that my reds were still going down a little.  I haven't seen a copy of the lab report yet, but the PA said all my counts were good.  I'll let you know how good as soon as I get my copy. 

    Bobbie Jo - so sorry you're still not feeling up to par!  It will get better, we promise!  But talk to your doctor, take the nausea meds, and don't suffer needlessly. 

    Rose - nothing like seeing the tumor shrink to know this is all worthwhile!  You're kicking cancer's a$$ right outta there!

    Hugs, everyone!

    Michelle

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  • kyroheal
    kyroheal Member Posts: 48
    edited August 2011

    Bobbiejo - I don't feel like myself for 7 days or even more. Don't worry you will get over the hump as long as you feel a bit better than the day before you should be heading in the right direction. For me, the way my mouth feels (which sets in later) also effects how I feel about food and resulted in me not eating properly.

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    YES! The MOUTH! Around days 7 through 9, the mouth sucks. Starts to hurt/peel. MO said it's called mucositis. Brushing and rinsing with the salt/baking soda mixture helps.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Hi everyone!  I am home from AC #4, yippee!!!  I am half way there!  Not feeling too bad, just relaxing on the couch and watching some Hell's Kitchen episodes while catching up around here.

    I have not had a mouth problem since I started taking Valtrex.  There is also the "magic mouthwash" that can bring relief.  Ask your MO for it.  You should not have to suffer.

    Michelle

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited August 2011

    YEAH, MICHELLE!  The rest of your journey will be downhill!  Congrats to you!

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  • FGCUfan
    FGCUfan Member Posts: 41
    edited August 2011

    Finally labs are ok again!  WBC is 21,000 & Hgb is 9, so no transfusion.  Saw the surgeon today & he says all is well from his prespective.  Talk with my intenist office & my guy is returning to work after his cancer surgery this week.  So glad, he's my rock!  Tomorrow is the 4th & FINAL A/C & I'm ready.  I'm feeling good, just tired but that's not unusual with my fibro.  More tomorrow!

    Love, luck, laughter, peace, prayers, & little SEs to all

    Suzanne

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  • shirleya
    shirleya Member Posts: 4
    edited August 2011

    Thanks Michelle,

    Chemo brain. I asked again to day and ............  It is 12 weekly doses of Taxol starting in 3 weeks

    SEs have gotten worse after the 3rd AC but that is also due to other depression factors in my life.

    Made myself eat cottage cheese and canned peaches when I got home.

     I must say googling the internet for Breast Cancer and Chemo can be a downer.  I feel like I have bought a time share in a chair in an experimental lab.

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  • cider8
    cider8 Member Posts: 832
    edited August 2011

    Shirley, one of the first things my nurse navigator was to NOT google, but just go to breastcancer.org for info.  That's all I did for about the first month.  Once I was less freaked out and I wanted to look for specific things (vs general), then I googled.  

    I had my first of 4 taxol.  Yay!  It took 6 hours.  I don't have that throat or almost heartburn thing going on.  I do feel like my body is loopy.  My brain not so loopy, but my body doesn't feel like I'm so in control of my movements.  So wierd to describe!  Maybe like my body feels dizzy but not my head.  Some sort of subtle disconnect.  I think it's weakness and what, the bone pain?  I forgot to take Claritin before, so I took it this evening and it feels a bit better.  I'm looking forward to a good restful sleep tonight!

     It's so good to see more #4 AC  DONE!  When I was first told of my treatment plan (DD 4 A/C, 4 Taxol) it seemed SO LONG. But day by day the mid point came closer.  And now I'm past the mid point and I'm still OK!!  This support has been great.  Ladies, we are all awesome!!  

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Paula - 6 hours?  Wow!  I know the Taxol itself takes 3 hours at my center.  Did you get some lengthy pre-meds and hydration?  And are you icing your fingernails and toenails?  I am going to try that.  I don't know if I'll be able to stand it, but it's supposed to help minimize nail damage.

    Taxol gals - are you icing?  And remind me what you are taking to prevent neuropathy, please. And are you getting Neulasta afterwards?  My oncologist doesn't think it will be necessary.  What are you experiencing?

    I'm feeling pretty good this first "morning after". 

    Shirley - cottage cheese is a great source of calcium and protein.  Unfortunately, I can't stand the stuff!  I've tried it every which way, and it's just a no-go.  I don't like milk at all, and I think it's just a little too close to that taste.  I can eat any other kind of cheese.

    Have a good day, ladies!

    Hugs,

    Michelle

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  • Southamptonmom
    Southamptonmom Member Posts: 491
    edited August 2011

    Michelle, My MO says that the ice doesn't work. I go to Fox Chase Cancer Center. They are a world renowned cancer institute. She did, however, say to take L-glutamine, and B12 with B complex vits. She didn't say how much, but I googled it. The L-Glutamine is 10 grams 3 times a day for the entire week of chemo, and then cut it back to twice a day the rest of the time. The stinkin B vitamins I bought are water soluable, so I'll be using them up quickly then looking for non-water soluable Bs. Water soluable vitamins don't absorb so they get pee'd out.

    Did you ever try ricotta cheese with some splenda or truvia??? Oh my. It's a cannoli filling filled with calcium! You need to squeeze out the water first, and can add orange, almond, or vanilla extract. I use a clean cloth or paper towel. Yum! I always wondered why Paula Dean used cottage cheese in her recipes when there's ricotta!

    Shirley, I am still guilty of googling. It is a downer, and found that the women on this forum have more information than any ASCO or JCO journal!

    Suzanne, Way to go on AC#4!!!!

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited August 2011

    Michelle, my Taxol treatments took 5-6 hours as well.  This is the routine at my onco office:  lab draw, triage nurse, go to exam room to meet with doctor & discuss labs, move to treatment room, start premeds (4 @ 20 minutes each), then Taxol (3 hours).

    I did not ice & had no nail problems.  I was absolutely freezing during the infusions, so I couldn't imagine adding to that!  :)  I also didn't take anything to prevent neuropathy, & I didn't experience any problems.  I did get Neulasta after every infusion, but it is my onco's protocol to do so.  It's amazing to me how treatment varies throughout the country!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2011

    Suzanne - I love Cannolis and my local grocery store/butcher market carries cannolis and filling from my favorite bakery in Boston's North End.  So yes, I could eat Ricotta with Splenda.  Great idea!   I don't have a problem getting in my calcium.  I eat Greek yogurt almost every day along with some berries and Splenda.  And I have been taking a calcium supplement for almost a year.  Amazing, my nails no longer break at the quick!!!  And thanks for the tips on the supplements, I plan to take those.  I talked to my MO yesterday about it and the icing.  I am worried about neuropathy because I am diabetic and the Taxol could make for a double-whammy.  Just wanting to do as much as I can because for a diabetic, neuropathy can be really dangerous.  I don't know how well I will tolerate having my hands and feet iced for 3 hours.  I'll probably try it the first time, and if it hurts, I'll forget about it.  Some say cold caps don't work to keep hair, too; but some women swear by it.  

     BobbieJo - thanks for the detailed routine, we follow pretty much the same process.  I didn't think about more IV premeds for Taxol.  With AC I took a small dose of steroids and one Emend, and got a 20 minute infusion of Aloxi coupled with an hour of hydration.  I guess there will be additional pre-meds with Pepcid and Benedryl, not sure if steroids will be IV or pills.  We had some discussion about nausea pre-meds and I don't think they typically administer them, saying that nausea is not a problem.  But, I am afraid to change a thing regarding nausea prevention.  It has been so well-managed and if it ain't broke...  I am not usually overly chilly during infusions, but they have a nice supply of heated blankets in case I need them.  I have sent DH to fetch one for me a couple of times.  And they told me I wouldn't need the Neulasta shot.  I think I'll request a test after the first week to verify.  I don't want to end up with another delay because we found out that my whites are too low on treatment day.  

    Yes, there are definitely regional differences when it comes to treatment!  It does make you wonder which is best.  Just the idea of getting Taxol first on a weekly basis rather than DD after DD A/C is puzzling.  

    Michelle

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