March 2010 Chemo Start

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited May 2010

    Forgot to add to the above post, these gloves and slippers are the exact same ones that were used in the 2005 and 2008 clinical trials. I don't know if they are the same ones being used in the current New Zealand clinical trial but I assume it's likely. I can't find the 2008 one (done in Japan) offhand but here is a link to the 2005 (French) one.



    http://www.cancer.gov/clinicaltrials/results/frozen-glove0805



    Again, they used Taxotere in the studies which is even more prone to causing these problems than the Taxol I'll be getting, but I am using the "elephant gun" approach against this particular side effect! :-) The results of the 2008 trial were just as impressive as this one was. I can only assume that the reason more oncologists don't suggest these is the cost of the gloves and mitts and also that most patients don't even know about/ask about it? None of the people I know who received a taxane were even told about it by their oncologist, which is a shame.



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  • sarikasd
    sarikasd Member Posts: 31
    edited March 2010

    Stacey - Thanks so much for your wishes, I will be going for round #1 in 3 hrs and after reading all the posts am not feeling too  nervous.  My nurse or Onc didnt mention cryo slippers/gloves.  Is it something they provide at the hospital?

    Gemini- I am 33 and have triple negative BC the worst of the beast.  Do you have BRCA gene mutation?  I am BRCA 1 positive.  While we have limited options in terms of treatment, we usually respond pretty well to chemo.  I am trying to think of that.

    Ladies, I did wig shopping yesterday and it was actually fun.  I am going to submit the bill to my insurance, I am not sure if they cover wigs, my Onc said they do.  Do you any of you have any experience to share on this?

    Good luck!

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  • frosty1
    frosty1 Member Posts: 420
    edited March 2010

    Les -- your wife is very lucky.  First, she has you there for support.  Second, you found US!  Go ahead and cry.  For me, seeing my husband cry made me realize he really was impacted by all this.  And, as we women know, sometimes it just feels good to let it all out.  BUT don't talk about your Aunt.  This is about your wife.  Look up the American Cancer Society and send her over there -- they give out free wigs and have a great class called "Look Good, Feel Better."  I went yesterday, even though I'm not a group person, and had a blast.  We tried on wigs just for fun, tried on hats, did our make-up, chatted, compared notes, and came away with a free wig and a bag of make-up/skin product worth at least $500.  Just being there for her is the biggest thing.  As you may have noted from all our discussions, HAIR is the biggest issue.  You can hide the loss of a breast or two.  But the hair ... I'm having a 'Hair Today, Wig Tomorrow' party this weekend.  Friends are encouraged to wear a wig or a hat.  I have a few wigs from my costume box.  I will get my head shaved tomorrow.  And I will change out my wigs every hour.  Sometimes you just gotta have a sense of humor to get over yourself.  ANd don't think I'm okay with all this ... tomorrow I will be a case as my hair falls to the ground.  I'm already tearing up thinking about it.  Good luck to you!

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  • frosty1
    frosty1 Member Posts: 420
    edited March 2010

    Sorry ... Les, I have added you to our list.  Please feel free to check back in and let us know how you and your wife are doing.  It is nice to have the male perspective once in a while.

    Welcome SuzyE and Gemini2010!  We are becoming a strong group.

    Today is day 8 and I feel really good.  I'm almost afraid to say that.  Day 5 was my worst.  Day 6 felt nausea most of the morning and heartburn.  Yesterday bit of nausea heartburn.  Today okay.  I went out and walked 2 miles Monday and that helped the heartburn; same thing yesterday.  Drizzly today, so I may hit the Wii.  Stay active!

    And yes, I have to eat every 2 hours.  Didn't think of that when I went to Costco on Monday.  Thank goodness for the samples!  It's almost like when I was pregnant and I had to keep something in my stomach my first trimester.  So now I will pack a bag with small snacks to take with me everywhere.  Add cottage cheese to your list -- good protein and dairy as well.

    Hugs and wishes to all this week!

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  • Julia257
    Julia257 Member Posts: 284
    edited March 2010
    Thank you so much, Lovemygarden, I wasn't aware of any of this.  I'll order them right away from M&W.  I guess I should get two pairs of each.  Thanks again, my best wishes to you.  Julia
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  • sarikasd
    sarikasd Member Posts: 31
    edited March 2010

    Wow Frosty, the idea of having a party to celebrate hair loss is awesome!  I hope you have a great time. 

    Les - Your support means the world to your wife and its ok to let it out sometimes.  I wish your wife all the best.

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  • dutchgirl6
    dutchgirl6 Member Posts: 673
    edited March 2010

    I just found out that my first appt with my med onc won't be till April, so it appears that I won't be starting chemo this month as I originally thought.  So, I will be bowing out of this discussion board and hopefully finding one for April starters.  I wish you all luck and strength as you continue on your cancer journeys.

    "Women are like teabags; you never know how strong they are until they're put in hot water" 

     

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  • Ana1973
    Ana1973 Member Posts: 88
    edited March 2010

    Hello all, I hope this post finds you all feeling as good as possible. It has now been confirmed that I will start chemo on March 18th. TCx4 followed by radiation and HT. Since some of you have already started your treatment, do you have any tips for us starting behind you.

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  • badger
    badger Member Posts: 34,614
    edited March 2010

    Hey all - how's everyone today?  I started for work this morning after my usual a.m. gig - no breakfast just grab a coffee and head out the door.  That routine is not gonna work any more.  I got a mile from my house, felt queasy and turned around.  Luckily I had made arrangements to possibly telecommute so e-mailed my boss, sat down and had some oatmeal and felt better pretty much right away.  Whoever said eat something small every two hours is right on! 

    So I guess I'm on the BRAT diet: bananas, rice, applesauce, toast.  (That is so funny to me as a bratwurst-eating Wisconsinite!  or I guess now a former bratwurst eater, they're not a healthy food choice.)  I'll add oatmeal, mashed potatoes, yogurt, and cottage cheese to the list.

    BTW I did get a lot done from home today without all the interruptions at the office!  I could get used to this.....

    Lovemygarden - the IV pre-meds I had were dexamethasone (generic for Decadron) and Zofran.  I have a bottle of prochlorperazine maleate (generic for Compazine) for nausea and I've been taking one every 5 hours. 

    Ana1973 - a good place to start is the Tips for Getting thru Chemo threads, and I'd also read through the Feb chemo girls thread since they are a month ahead of us.  {{hugs}}

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  • JLLG
    JLLG Member Posts: 27
    edited March 2010

    I am starting TC Chemo on Monday March 15th.  

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  • sarikasd
    sarikasd Member Posts: 31
    edited March 2010

    Hello Ladies,  I didnt end up getting chemo today as originally planned since my Onc wanted me to have a CAT scan first.  She wanted to check out a spot that she thought was on my liver.  I was scared beyond words, however my scan showed nothing so I am feeling extremely relieved.  Now I am supposed to go tomorrow morning.

    Groundhog, its great that you are working through your treatment, I am sure that will help to uplift your spirit.  

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited May 2010

    Sarikasd: Apparantly, very few oncologists/treatment centers offer the frozen gloves routinely, at least not in the USA anyway. The person I communicated with at M&W before ordering the gloves and slippers did mention in an email that in his experience, far fewer American oncologists purchase these than do those European and Asian countries. His comment was something along the lines of "oncologists in the USA seem almost entirely focused on treating the disease rather than on how changes in the patient's appearance affect their quality of life." Pretty interesting stuff!



    Also as you can see they are expensive, and I would think that some (many?) insurance companies might not consider this a "medically necessary" treatment adjunct and thus refuse to cover the cost. If the treatment center owns the gloves they would probably charge the insurance company for the patient's use of them (as we all know, NOTHING to do with cancer treatment is ever done for free!!). And many patients might not want to, or be able to afford to buy, their own.



    If anyone would like to read the actual clinical trial results, with contains charts and some actual photos of the protected/unprotected hands which show the clear difference in outcomes between the two, it can be read in full at http://jco.ascopubs.org/cgi/content/full/23/19/4424 . M&W sends a printed out copy of this trial along with gloves or slippers ordered from them. There was a subsequent trial using the frozen slippers but it isn't on any of the free sites that I could find (the others, such as PubMed, are subscription-only access).



    Groundhog: Sounds like a good thing that I loooove my daily oatmeal! :-)



    Sounds like Zofran is the one most often used, but my oncologist uses Aloxi which she said lasts longer (up to 5 days) just from the IV premed and often eliminates the need to take anything else in pill form. I'll let everyone know how it works! http://www.aloxi.com/CinvHome.aspx



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  • JLLG
    JLLG Member Posts: 27
    edited March 2010

    I too am starting TC chemo...the 15th.  I have not been able to get a reply from anyone on any of the message boards on what to really expect....

    I am scared...anxious....and just overwhelmed.....I guess it is to be expected.

    After tx I will post what exactly it was like for you since I am going 3 days before you...

    Wishing you the best

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  • JLLG
    JLLG Member Posts: 27
    edited March 2010

    "What is was like for ME"

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  • Julia257
    Julia257 Member Posts: 284
    edited March 2010
    Hi JLLG, wishing you the very best ...easy journey, total success!  I go a day after you.  I have been "getting ready" by eating as well as I can, taking supplements, trying to sleep and especially the 1/2 hour walk first thing, well, after coffee, seems to help alleviate the anxiety.  Also I feel strengthened by the knowledgeable and supportive, kind ladies here.  I'll purchase the cryo-gloves mentioned earlier.  Lovemygarden, my chemo nurse had no knowledge of the cryo-gloves, I'll show her the info and clinical trials when it arrives.  Have a great day!
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  • frosty1
    frosty1 Member Posts: 420
    edited March 2010

    JLLG - a few of us started last week and you can follow up on our posts as to what we found helpful.  The day of injection is really a non-event, other than the emotions pouring out of you.  Most of us found it to be just a lot of sitting in one place.  Take food -- nothing with strong smells, but small amounts (dried fruit, nuts, yogurt, instant oatmeal).  Drink lots of water (2-1/2 qts minimum the day before, day of, and 2-3 days after).  Take your meds just like you are told.  My first 3 days I was fine on food -- ate everything.  Starting evening of day 4, started to have tummy issues where I could only eat small amounts.  Now I am eating small amounts every couple of hours -- I have to remember to take food with me wherever I go.  There is a good thread on things to buy or have on hand.  I would recommend Biotene mouthwash for dry mouth.  But that is the only thing I bought.

    Groundhog - I noticed I was waking up about 5am and feeling sick.  I would get up and take a Zofran go back to bed, then get up at 630 and immediately eat.  THis morning I woke up at 4am, ate a few crackers in bed (I have to find something quieter!) and was fine this morning.  No Zofran.  And I feel good!  Woohoo!  But I do need to eat every couple of hours.  I feel like I'm back in my first trimester when I was pregnant.  I carried a small lunch bag with me everywhere as I also had to eat every couple of hours. 

    You all will do great!  Walk, exercise, drink your water, and be prepared to feel totally wiped out.  Allow it to happen (you really can't fight it) and then move on to the next day.

    Wishing you all minor SEs!

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  • staceyt
    staceyt Member Posts: 106
    edited March 2010

    Hello Marvelous March Madames,

    I have to say it is interesting waking up to a new day to find out what new SE I have.  Today is, my lips, yes that's right LIPS.  I was never a lipstick wearer to begin with and I guess I still don't need to worry about putting any on because they are bright Red, not chapped or dry just RED and burn.  Now, being that I am fair skin (strawberry blond hair) you can only image what they look like, I myself had a GREAT laugh at me in the mirror this morning while getting dresses for work.

    Wishing all who started first treats this week well and sending along happy thoughts. Stacey

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  • sarikasd
    sarikasd Member Posts: 31
    edited March 2010

    Lovemy garden- Thank you for the information on cyro gloves/slippers.  I asked my Onc about them but she didnt know about it.  All she said was that I need to moisturize my hands well which will help with the chapping.  But I am going to find out more.

    My round #1 this morning went well.  I had the catheter from my CAT scan yesterday so no new pricking with needle today, Thank God for small mercy! I took Emend and Dexamethasone orally.  Then through IV they first gave me saline , then Aloxi (another anti nausea medication).  Then the nurse started giving Adriamycin.  I got 3 syringes of that.  Then finally she started cytoxan which lasted for 30 mins.  The whole procedure took about 2 and 1/2 hrs.  During the IV, I was sipping cold water and juice.  I am not feeling sleepy or tired because of the nausea medications right now.  It been only 2-3 hrs since the chemo so its too early to say anything but right now I am feeling great, hopefully it continues.

    Good luck to all who are starting this week

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited May 2010

    stacyt: I asked my dermatologist a week or so ago what I should use on chemo-dried-out skin in case my normal moisturizers (Lubriderm Sensitive Skin or Cerave) don't help. She said just use plain Vaseline. I asked if she meant "even on my face???" (I have combination skin and normally use Neutrogena Oil-Free for Sensitive Skin) and she said yes, face/skin/lips/scalp, anywhere that I might experience flaky dryness or redness due to the chemo. According to her the plain Vaseline (not the Lip Therapy, just plain old Vaseline with no other additives) is better than Chapstick or the various 'lip therapy' OTC stuff out there.



    I can't use Mederma or any of the other scar-reduction stuff because they all have a fragrance, and she told me to just use Vaseline on that too. It's what's recommended for any healing skin that doesn't need an antibiotic used on it.



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  • GurleeGirrl
    GurleeGirrl Member Posts: 13
    edited March 2010

    I am new to this board and will be having TAC 3 wks/6 cycles beginning 3-15.  I had a modified radical mastectomy on 2-16.  Went to my "chemo class" today and it finally hit me.  I'm nervous and not sure what to expect. 

    After reading all your posts - it appears most of us share the same fears/emotions.  Losing my hair will definately affect me more than losing my breast.  Everyone tells me "it will grow back" and my response to them is "you can say that because you aren't going to be the bald one!".  It's so aggravating!  I give you ladies credit who are going to shave it before it starts to fall out.  I just can't bring myself to do it.

    I also wanted any advice on things to take with me to treatments.  Other than something to occupy my time, I'm clueless.

    I look forward to sharing this next phase with you all. 

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  • teemee
    teemee Member Posts: 122
    edited March 2010

    Welcome GurleeGirrl to our March Madness ;) There is a great list of things to bring to treatments under the main "Chemo-Before & After" heading. It's at the top with a push pin symbol next to it. Also, the February girls have a lot of great advice, so check out that forum.

    Sorry that you're here, but if you have to be in chemo, this place is the best.

    Oh and I finally got a start date of 3/24. frosty1 can you believe how long this has taken me? I was supposed to start 2/4 before all the infection craziness!

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  • JLLG
    JLLG Member Posts: 27
    edited March 2010

    Good Morning..

    I asked my OncoDoctor about the gloves and he said I could not use them.  When I asked "Why not?" he replied due to not enougth studied on metas.....I have found so much conflicting info....One Dr says this, the other Dr says that, then another one says something totally different....So, I will venture into Chemo without them....

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  • sarikasd
    sarikasd Member Posts: 31
    edited March 2010

    Welcome to the newcomers!

     My first evening of round #1 was bad.  4 hrs post the chemo, I suddenly started feeling nauseated and lost had some stomach cramps. I was really upset that the SEs set in so early and very definitely making me restless.  My doc had told me to take compazine in the night, other than that I was not supposed to take  anything else so I waited till 8:00 pm and then took it.  I am happy to say that compazine gave me immediate relief.  I was drowsy for some time but after about 40 mins I was even able to spend some time with my family.  Maybe I shouldnt have waited so long to take it.  I will surely ask for more instructions from my nurse for next time.  

    JLLG - My Onc too doesnt suggest these gloves so I am going ahead with the treatment without them, hopefully we will be ok. 

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  • frosty1
    frosty1 Member Posts: 420
    edited March 2010

    Teemee -- it's about time!  Although you really don't want to start, it's more getting to the end that makes waiting so hard. 

    Welcome GurleeGirl!  Things to bring:  book, knitting, something to keep you occupied.  Some small snacks, juice and water.  I decided I needed something fun, so I brought bright colored bendy straws to drink my water with.  Silly, but colorful.

    Sarikasd - so sorry you got hit with the nausea.  Yuck.  My nurse said I could take my meds every 6 hours, so definitely take it earlier next time! 

    I'm feeling pretty good.  Realized that I wake up at 4am hungry and that was causing me nausea.  So I will eat a small something while laying in bed.  I haven't had to take anti-nausea meds for the past two days.  Almost felt like eating normal yesterday, too.  Although can't do a large amount.  I was miserable after pizza last night. 

    I had my head buzzed.  Still left about a 1/4inch.  Looks okay.  My dad said we look alike.  I now know what my hair color really is and I'm not too keen on it -- very gray and brown.  I look like my little brother!  We will get a photo of the 3 of us with our similar hair cuts this weekend at my "Hair Today ... Wig Tomorrow" party.  I plan to change wigs every hour or so (going through our Halloween stash - starting with Lady Godiva, then Orange Beehive ...).

    Take care all ... rest this weekend ... take care of yourselves!

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited May 2010

    frosty1: Have fun at your party tomorrow! I love the Lady Godiva idea but of course the question then becomes... what's the REST of that costume?? ;-) (cue the old Peter and Gordon song from the 1960s, please! ) LOL



    JLLG and sarikasd: I've found there's a pretty wide range of opinions and procedures among oncologists, and I can understand that some aren't comfortable with the mets risk even though statistically it's very small for someone who isn't already at risk. My onc, as well as the oncs that my friend with similar cancer consulted at Sloan Kettering and at Stanford, is fine with the "cold" options (either ice water bowls or the cryo-gloves/slippers), but just to show how widely things differ amongst them: My onc will no longer allow the use of EMLA or other lidocaine numbing creams, while most other oncs have no problem with it. I guess when it comes to oncologists, the phrase "Your mileage may vary" really does apply! :-)







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  • Taty98328
    Taty98328 Member Posts: 27
    edited March 2010

    Hello! I`m new here. I`m 37 y.o. mom of two kids, 9 y.o boy and 15 months girl. Was diagnosted jan15, 2010, I`m BC triple negative. Started chemo 3/3. I`m on CTrial. 6 x Taxotere+Cytoxan+ Avastin (every 3 weeks one year).

    Diagnosis: 01/2010, 1.8cm, Stage Ic, 0/1 nodes, ER-/PR-, HER2-

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  • sarikasd
    sarikasd Member Posts: 31
    edited March 2010

    Hello ladies, Today my day was absolutely fine.  However, I started feeling a little bit of nausea few mins ago so I immediately popped a pill.

    lovemygarden- My Onc at Memorial sloan kettering (Basking Ridge, NJ) is of the super cautious type, also being triple negative I am in the high risk category so I guess she doesnt advocate the use of frozen slippers for me.

    Taty-I am so sorry that you are having to deal with this especially with two young kids.  I am 33, have triple negative BC, have a 5 1/2 yrs old boy and I am super frightened with the prospect of not being able to do things for him.  Fortunately, I have family helping me out and my husband is very supportive so till now things have been under control.  I wish all the best to you and your family.  I am curious about your chemo regime.  I was told by my Onc that Avastin is not given to patients for early stage BC, but ofcourse you mentioned being in a clinical trial so can you please tell me more about it in terms of the expected outcome, location etc.  Your input will be greatly appreciated.

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  • Taty98328
    Taty98328 Member Posts: 27
    edited March 2010

    Sarikasd, I didn`t copy a trial paper, totaly forgot about it. Nex time I`ll ask trial nurce make my copy. But this trial for TNBC in early stage with high risk recurance. My mom died  last year from ovarian cancer and she had BC 8 years ago. My gmandma had BC at age 43 and lived 30 years after. Now I`m waiting BRCA gene tests. All our family over seas. My husband very supportive and I have very good friends, they help me a lot.

    Tatyana

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  • frosty1
    frosty1 Member Posts: 420
    edited March 2010

    Welcome, Taty!  It is good to have friends around to help.  That was the first thing I learned when I was diagnosed and then had my MX surgery -- say yes when people offer. 

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  • sarikasd
    sarikasd Member Posts: 31
    edited March 2010

    Yup, Frosty's advice on saying yes to help is a very good one.  One of my aunts also told me the same thing when I was first diagnosed.  So now I am in a way enjoying the full time help that I am getting from my MIL who has come over from India to help us out.

    Tatyana- I am BRCA 1 positive and my family had many BC cases in thirties and all of them are survivors thank god, except for my mom and we now know for sure that her case was not handled the way it should have been at the time of the surgery.  So what I am trying to say is that we TNBCs also have a lot of hope.   I look forward to knowing more about your clinical trial.  Hang in there. 

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