January 2013 chemo group

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  • Caya
    Caya Member Posts: 971
    edited January 2013

    Glad my post gave your some encouragement LeeA.  Being triple+ means you have lots of treatment options - chemo/herceptin/the anti-hormonals and of course other drugs like Tykerb and soon TDM1.

    I wish you and all the other January 2013 chemo gals (and guys, if there are any) the best of luck with your treatments/surgeries.

    caya

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  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Hey ladies - good morning - guess being on the west coast I am always the last to add any commentary . Had mentrual cramps so bad last night I could have screamed - finally under control but no signs of a period. I thought it would just go away ( I am 52 and still have had regular periods ) but it seems my hormones are raging - ovaries seem stressed and I broke out in zits . I plan to call onco today . I also had to take benadryl last night bc was starting to see hives on my neck just under my ears . I guess the steroids are totally gone now so I may be a bit allergic to the taxotere .....

    Regarding ports - I was never even asked if I wanted one . In, doing TC 4 x and my first infusion was totally painless - guess I ,au have good arm veins ... I would say off can avoid the port - avoid it .

    Ski-mommy - my dr prescribed Xanax which is. Benzo drug like Ativan - when I was first diagnosed . Unfortunately now I can not go to sleep without it . He said not to worry - would wean me off it once I am done with fragments . It sure helps me stay more calm during the day too - but I know once I am through treatments I will need to learn natural calming methods instead - don't want to be hooked on benzo's forever . So just be careful !

    Going out for a walk with friend then into the club jacuzzi ( feels so good ). And then a pixie cut and color my hair platinum ( always wanted to do that ). It will make it easier to try on wigs next week !!

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  • Fighter69
    Fighter69 Member Posts: 55
    edited January 2013

    Hi Ladies and Happy New Year to each of you !!

      My full scan is in the am to see just where I am and I pray that the scans are clean just like those 3 months ago . Then i meet with the Onc doc next week and I guess then chemo will be discussed and other options . I am sooooo..... looking forward to getting this cancer thing beaten and done . I have so many questions for the Onc doc that I hope I can cover them all in one day. Glad to hear that everyone is doing well and yes I am also scared about the hair thing . Before I thought I had to have surgery last year , I made peace with the thought of not having my left breast anymore so I guess no hair will be the same but not that easy to part with . A nice short cut sounds very sexy and I am looking forward to it . 

    Will keep in touch 

    Fighter 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Let the games begin. Girls, I've bellied up to the bar, but don't see anyone else at this happy hour. I'll take some red wine ..... Oh way wait that is the adriamyacine (ok I know my spelling on that is way off). Here with my DGF (hope that mean dear girl friend. She packed snacks and games. I'm extremely lucky to have her here to give me giggles.



    I just asked the onc about salons and she said it was fine. Interesting she actually suggests against the gel. Says it can still damage the nails from the product used to remove it. So just polish it is. She works with a lady that runs an organization that specialized in oncology spa care. They know how important to women theae services arer and how it can help with much needed self esteem.



    Bummer is I was hoping for an alternative that may save my nails.

    I even came prepared with frozen veggies to try the icing thing, but the nurse talked me out of it. She said that the icing is protecting your finger tips and toes from getting the chemo. I'm here for a reason so I guess why would I want to protect any part of my body from its killing factor.

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Skimommi- I will probably go with a layered shoulder length wig. No curls or anything. i will try to keep it close to what I had a few years back before I let my hair grow down to my ass... My son wants to go with me to help pick it out. He came with me to pick out my new glasses last year and did a great job. Everyone loves my glasses and it is not a frame I would have ever chose for myself. So we will see how he does.

    Hope your first round of cocktails was uneventful. (insert virtual fist bump!)

    God bless our dear friends and support people... They truly keep us sane. They are there when we want to laugh and cry and they never know when either is going to happen.

    Still trying to figure out how to post pics on here... anyone??

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    Skimommi - Hope you aren't too hungover from the night out.  I am heading for the bar tomorrow and will toss back the same cocktail.  Here's Looking At You Kid!

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    Skigirl72 - there is an icon on the message bar that has a picture of a tree.  Use that to post pictures.  You have to link to another website--FB, Flicker or whatever that has the photo.

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  • Laura5133388
    Laura5133388 Member Posts: 577
    edited January 2013

    Sorry to anyone who asked me questions on using cold caps,  I've not been on for a few days. Please feel free to ask again if you still need info.

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Thank you Zorina!

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  • MamaK16
    MamaK16 Member Posts: 8
    edited January 2013

    Bryona- did your school start back today--if so, hope work went well.

    Skimommi- thanks for posting about the frozen veggies.  That makes total sense that we want the chemo to get everywhere- so one less thing I have to worry about packing in my bag.

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  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013



    Wow did not know icing could prevent the chemo from killing caner cells in hands - I will ask my onco alut the and report back . So many women suggested to me to do that !

    Will let the group know what I find out !

    Hope everyone had a good day !



    Regarding wigs - I am getting a pixie it Friday so I can try them on ! The style called Skye I tried last time was nice - layered shoulder length _ better thn my hair !



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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Laura, 

    I jsut placed my order for the Penguin Cold Caps. My PS said he has several patients who used them and loved them! I start chemo on Wednesday, so Tuesday night my hsband and I will do a dry run through so we know what we are doing, but I'm excited to give these a try! Fingers crossed!!

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  • Leamitch7
    Leamitch7 Member Posts: 12
    edited January 2013

    Hi everyone, tomorrow is the big day. Hope I can sleep. Scared & feeling very lonely tonight. My ex is taking me to my appt. tomorrow. Weird! But, I don't have have anyone else on the east coast to take me. It's a 2 hr dr to Boston. I've done it on my own a few times but, I'm worried I'll be to tired tomorrow. 9am-ps to get stitches removed 10 am labs. 11 am mo. 12 pm infusion TH. I'm totally unprepared no wig, teeth cleaning, snacks nothing! Think it's denial. Wish anyone else starting tomorrow the best.

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  • engk916
    engk916 Member Posts: 13
    edited January 2013

    Good luck tomorrow!



    I met with my onc at MSKCC, I will start AC/4cycles on 1/21, followed by TH 12/wk. I'm oddly relieved to have my appointments scheduled.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Skigirl, to post a pic I simply copied it from the image on my computer, then pasted into the thread (ctrl-V).

    Fighter good luck on the scan tomorrow.

    LeaMitch, skigirl and whitetiger4873 you will do great tommorrow. Not at all what I expected. I felt so normal through the process. I even felt that I could have droven home, except for the fact of bein "drug-drunk" probably not a good idea. I still feel good. My appetite hasn't changed, just starting to feel a little foggy maybe. That could be the ativan.

    Sandra thanks for the heads up on the Ativan. I am so anti-pills and hope I won't begin relying on this for sleep. Just right now with all the steriods and such in my system then hope to switch for more natural alternataive like melatonin and other stuff.

    Good luck tomorrow ladies! Don't forget to drink, drink, drink that water. Good grief I feel like a water balloon. No one throw me!

    Zorina, DizzyMom and LeeA how are you girls feeling today? I'm jealous of the Disney Treatment.

    Ciao bellas!

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  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Leamitch I will think good thoughts for u ! The nurses will the good care of u - there is nothing to be nervous about for the infusion - u will be fine !!

    Amrdbit. - much good luck with the cold caps - I am impressed u are doing it !! There is a clinical trial out here at UCSF on cold caps - I believe they are using a type that is sort of a portable machine from Sweden - you should check it out !

    I am really bloated today after having severe mentrual cramps last night and this am- but I have not started !!! Really uncomfortable !

    To all of you starting chemo in January's - wish u minimal side effects - we can do this together !!!

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Leamitch,

    Good luck tomorrow!!! I'm sure everything will go well! Keep us posted! I'm getting my port put in in the morning. Sigh.



    If u don't mind me asking, where in Boston are you having your treatments? I'm a Boston girl through and through. Born and raised in Newton. And.... Make sure stay warm tomorrow! :)!

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Leamitch7 - you have a very long day tomorrow, especially with a two hour drive there and back.  I'm glad you've got someone to take you.

    The good news is this:  I think you might find that tomorrow won't be too bad.  At least, that's what my experience was yesterday.

    ----

    I had my first chemo infusion yesterday and I'm still waiting for the other shoe to drop but so far - so good.  

    Now, I'm fully aware that I'm on a steroid high (my son called today and when I told him I had steroids in the infusion yesterday he said "you sound great - the ramrod is back" - LOL!) and I'm fully aware that everything can change on a dime but for the moment - things are fine - and what I've found since being diagnosed is that everything seems to be very much in the moment because no amount of handwringing or wishing time to pass can make this process move along any quicker.  So, that's how I'm taking this chemo thing - as just another series of moments in the cancer "journey." 

    As far as these steroids go - wow... the best way I can describe myself today is as a boobless ball of fire!  Now I realize the cleaning out cabinets/closets thing isn't just a rumor - it happens!  I've had the labeler out, I've fluffed pillows, blankets, cushions in the dryer, I've cleaned the laundry room cabinet, etc.  And then, went to the gym and walked a mile around the track. 

    Oh boy.  The crash should be something else.  But for now, I'm making hay while the sun shines.  

    Good luck tomorrow, January 4 ladies (and guys - if there are any here or reading).  

    Eventually, April will come (or sooner for those who aren't on 6 treatments x 3 weeks apart). 

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  • Nanc620
    Nanc620 Member Posts: 38
    edited January 2013

    Ciao Bellas!

    We are in the grips of a cold snap here in Michigan...ugh.  Had my chemo class today and feel so much better.  I was a nervous wreck when I got there, my BP was 158/90 and I felt like I could get sick but once Suzanne, the lovely PA began talking I was fine.  Of course she began with "Oh my, you don't look as if you are 59!"  Hello, my new best friend.  She then began with the that at this point my medical team considers me cancer-free. They got the tumor with clear margins, no nodes involved and if it wasn't for my triple neg. diagnosis I would going off to radiation.  She kept saying that the chemo was a wonderful insurance policy for me.  She also said that they consider it their main focus to ensure I suffer minimal, if any side effects.  I came home armed with scrips for steroids and made to promise that if I even felt nauseous to call them.  She said they have two things they can't stop...hair loss and the fatigue.  She did however say when I told her I was planning on getting my hair cut short this weekend to hold off and see how it goes...she said that they are seeing patients with thinning hair more and more often.  She supports my intentions of seeking integrative medicine help (Reiki, massage and accupuncture) and stressed that I stay on my 10,000 mg Vit D3 and multivitamin.  The neurontin I take for nerve pain from a neck problem may help with any chance of neuropathy. I found it interesting that they don't suggest icing the nails due to the Taxotere.  She cited a study that showed it is Taxol when they see the most nail problems.  She nexed my idea to get shellac nails...suggested Sally Hansen Hard as Nails in clear so they could keep an eye on my nail beds for possible problems.  All this to say I feel much better tonight...and ready for next Wednesday.  I'm glad that my husband, son and daughter went with me.  

    We are all going to triumph over this...with each other's help.  Have a blessed weekend...and I have you each written in my prayer journal.

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Holy cow! I'm gone for one day and I miss a gazillion posts! And the worst part was that I spent most of the day grading papers. I hate grading papers. Maybe the reason I'm not more freaked out about chemo is that I just keep thinking it can't be worse than grading papers... Wink

    (((Sheryl))) What a rotten experience. I'm so sorry you had to go through that. Here's what I think: Since you've already had to go through so much crap, you should now have the easiest chemo experience in history. Anyway, it gets my vote.

    skigirl, Zorina, and Leamitch, good luck tomorrow!

    skimommi, your description of bellying up to the bar made me laugh out loud!

    Deb, port in is one step closer to port out! Hope everything goes well tomorrow. :)

    LeeA, as soon as you commented on how many exclamation points you'd used, I knew it was the steroid! I wonder if anyone has ever done a study on the effect of steroids on punctuation use... Glad to hear you're feeling so good. Now, if only someone would develop the "boobless ball of fire" emoticon. :)

    Shoshana, ciao bella! LeeA is right about checking out the +++ thread; the women there are amazingly supportive and knowledgeable. And congratulations to your daughter, and to the proud mama!

    Sandra, we'll be late together... or we'll be the ones who leave the posts no one sees until morning. :) I hope that a little bit of extra benadryl during infusion prevents any further hives. How's your new 'do? If you post a picture, you can be the first in our Hall of Fame... :) 

    Fighter, hoping your scans went well today, and for all good results. When will you hear?

    engk, ciao bella! Your relief makes sense to me. I don't meet with MO until Jan. 10, and it's making me crazy. Blerg.

    (I definitely need to check in more than once a day. Y'all are too much -- I can't keep up! Rock stars all the way!)

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Nanc, so glad to hear you feel better after chemo class. And thanks for sharing the information about the clear nail polish. I worried about the idea of hiding my nails under color, but I can definitely do the clear. Sleep well, my dear!

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Hi to all!



    Glad to hear all the good news from those who have started treatment -- you rock! For those starting tomorrow, I know you will do great and you will be in my prayers tonight.



    Amrdbit - I'm so excited you ordered the caps...I think I'll be ordering tomorrow. Tonight I got a call from my MO with all good news. Scans clean, labs good and my Oncotype showed I can do just the 4 rounds of T/C...he was also happily surprised to see from the Oncotype that even thogh I have ILC and nodes involved it's a type of tumor that is less likely to return. I will sleep good tonight!!! if you have any cap questions, I can share some contacts who I'm sure would be happy to share. Don't forget to ask about the Latisse, too...I've heard a lot of success stories. I look forward to seeing how we do with them!



    Goodnight to all -- :)



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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Nanc620 - what a great post!  I didn't have chemo class so I feel like I gained a lot just from reading your post!  

    Re: blood pressure - ugh, I have developed white coat anxiety since being diagnosed in October.  The last time I was at the breast surgeon's office they wouldn't let me leave until it came down somewhat!  They had me lie on my left side in a darkened room - LOL!

    At home it is always NORMAL!  

    I love this part of your post: 

    She then began with the that at this point my medical team considers me cancer-free.


    I think this is a very important concept for all of us to keep in mind.  My husband continually reminds me of this - although I did have a .5 micromet but hey, that's gone, too and my PET Scan was termed to be "okay."  

    Maybe I should rephrase that and say that it's an important concept to keep in mind for those of us who have had surgery first.  

    Maybe I should just keep my big fat mouth/fingers quiet but I've gotten this far and I'm flying along on steroids so I'll let it stand.  Anyway, it resonates because one way I've tried to stay positive about this is to think about my tumor being in a pathology lab miles away from here and it has been my way of "distancing" myself from this disease.  I also think "I'm 5'4" and the tumor was 2.5 cm and I'm a lot bigger than it and I can beat this!" 

    (Mind games but whatever works, eh?)

    Oh, my latest mind game regarding chemo is so crazy that I'm embarrassed to even type it out (!) but the mind games help me from going too far into the dark place so I use them when necessary.

    Also, I think of myself as having divorced my cancer.  Sent it packing, etc. 

    Lastly, thanks for including us in your prayer book/journal.  Big hugs for that!  

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  • ablydec
    ablydec Member Posts: 124
    edited January 2013

    LeeA:  Yes, our story sounds very similar.  And actually, the pathology report said "2.5 cm" for my tumor too.  I guess I shaved a few milimeters off when I was putting in info.  (Is that like fudging it on reporting weight for the driver's license?)  "My tumor is sittting in a lab somewhere miles away".  I LIKE that one!

    Amrdbit:  WOW, what a kindred spirit.  Hodgkins, ABVD, now this.   That is the very cool thing about this site, to find such great fellow-travelers.  I also knew I was at increased risk, but I wasn't thinking about my treatment.  That seemed like a million lightyears ago.  I was thinking about my mother, who was also diagnosed with BC at 48 (which I am now).  In those days (1980) they told her that if she had clear lymph nodes, no need for chemo.   I suspect if she were here now the recommendations would be different.   We're lucky to be going through this now, when so much more is known.  

    Here's a question for all of you:  How did your doctor arrive at your particular chemo protocol?  I know there are quite a few.  I know that I can't get Adriamycin again, because I had it 20 years ago.  But in general...   Any answers?  

    One more question, for those finishing chemo.  Is it true that it gets much easier once it is "just" Herceptin?  I hope so, because a year seems an awfully long time.

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    ablydec - I think the software for the BCO.org site shaves off the size of our tumors because it asks for a range - i.e. 2 - 3 cm, 3 - 4 cm. 

    Re: Herceptin - I had one loading dose of Herceptin on December 12, 2012 without any chemotherapy along with it and I did fine.  No problems whatsoever. 

    Have you checked out the Triple Positive thread?  I've probably asked you that so please forgive me if I'm being repetitive.  Anyway, lots of discussion there about Herceptin, etc.  (it's a 400+ page thread).  

    Re: chemo cocktails - my oncologist says it's often an east coast/west coast thing - west coast physicians seem to go with the UCLA/Slamon protocol of carboplatin/taxotere/herceptin whereas east coast physicians have a tendency to prefer the protocol made famous (?) by Sloan Kettering.  There's also a protocol called FEC (?) that's associated with MD Anderson.  I'm guessing a lot of it depends on the grade of cancer, size of original tumor, etc. 

    Editing to add - I didn't realize Adriamycin was a one-time shot!

    Editing to add 2 - lol re: fudging the weight on a driver's license!!

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  • ablydec
    ablydec Member Posts: 124
    edited January 2013

    I guess Adriamycin can be hard on the heart, so they don't want to give it again.

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  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    I know its nickname is The Red Devil...

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    I know that the cardiotoxicity of Adriamycin builds up over a lifetime, no matter how far apart treatments are. So, they set a lifetime maximum, and when you hit it, you have to move on to something else. Luckily, all kinds of studies are finding that the taxanes are just as effective without the cardiotoxicity.

    From what I've read, it looks like the geographic divide connects partly to research. One group of oncs is excited about the recent studies demonstrating the efficacy of taxanes, so they give TCH (for us +++ girls). Another group likes the long history of studies of Adriamycin and worry about what they don't know about long-term effects and efficacy of taxanes only, so they give AC-TH.

    I don't know what the deal is with FEC. They use it in Canada and Europe much more frequently than here, but I'm not sure why they're leaving the taxanes out completely. Or maybe they give taxanes+H with FEC to triple positives.

    Or I could be totally making stuff up because I've read just enough studies to make me really dangerous...

    Maybe it's time to go to bed...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Byrona you have really done your research. It does seem that Europe is always so much further ahead of the game.  Once they have beat the dead horse long enough with positive results then the US and FDA step in and take a turtles pace to study it in a lab to understand it, then study it on rats, then proceed with a few studies on people, at an even slower pace . . . track it for some time . . . study it some more . . . etc. I think in another 10-20 year the whole Oncotype thing will either gone, or the percentages so much higher that we will see fewer women taking the red devil.

    Has anyone read about flushing the toilet at home twice? Neither the onc or any of the nurses have mentioned that at all. But I did read it somewhere.  Then again, there is a lot of information that is out there that the medical team doesn't mention . . . good, bad or indifferent?!?

    Those that are interested in what spa services means to us toxic sisters, there is an entire webinar series being held by spa4thepink, which is a non-profit that aids the spa community in learning how to treat cancer patients. They've teams with medical oncologists, and directors of integrative medicine from all over to discuss the benefit of spa and women undergoing treatment. While it sounds like this may be geared to providers of services, patients might be able to pick up some tips on what to look for in a spa and the questions to ask to ensure we are being protected, yet enjoying some of the much needed pampering. I think my oncologist is giving the first webinar Monday. Here is the link, but you will have to registerd.  Just click the webinar registration button: http://spa4thepink.com/.

    Ciao!

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  • Laura5133388
    Laura5133388 Member Posts: 577
    edited January 2013

    Amrdbit and Hope,  Penguin are the best by far. I took an Alieve before treatment. sebm9 has an extensive write up, just PM her if you would like it. makingway has a website full of great tips, I don't recall the name of it, but just PM her as well. She has helped hundreds of women with caps. Good luck and follow PCC protocol!

    Someone asked about Herceptin, no SE for me.

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