January 2013 chemo group

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Lauren, sending loads of positive thoughts, prayers, and hugs your way today. Here's to excellent, speedy results!

    Deb, I did the 3-Day a couple of times several years ago. I can't imagine doing it in June in Dallas! Crazy people! Ours is in September, which is usually a lovely, mild, sunny time. It is a pretty amazing experience. I remember looking at the pictures of people holding their shoes up during the closing ceremonies and thinking, "Now that's just weird!" but when I saw it (and did it) myself, I cried. Now I have some friends who want to form a team in my honor, which is sweet but also a lot of pressure... but it should keep me moving during chemo! :)

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    My DH and I saw a advertisement for the 3 day event. I would LOVE to do it and want to send out an invite to my crazy girlfriends! I an sending for all the info on the event. 

    Going in to have my port put in today.  Took an extra long shower this morning. I hate hospitals and cant stand the way they smell. Good thing I will be an out paitent procedure.

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  • MamaK16
    MamaK16 Member Posts: 8
    edited January 2013

    Hello!

    I haven't seen any mohawk pics of anyone yet!  I need a laugh.  I have to go back to work tomorrow, and not looking forward to it.

    Lauren15-- Praying for you also.  Hopefully you know something quick and don't have to wait through the upcoming weekend to get results.

    I've decided to meet with a female MO tomorrow to see if I connect with her better....thanks for comments about "girlie questions" etc...  I think Dr. Hagen Daz feels that he is Rico Suave or something.

    Hope all port placements today go well.  Mine is sore and I am finding I can't sleep on my port side so far, I wake up stiff.  I haven't been able to fall asleep, so I started taking ambien.  Hate that I am adding another medication for the liver to process, but I can't stand not getting some sleep.  Glad to know you all are thinking about your nails too.  I thought I was being pretty silly, but I did drag my daughter with me on Sunday to get that gel nail polish....it really is pretty good.  I have been putting it to the test by washing my hands about every 5 minutes because everyone in my house is hacking and coughing and I am terrified of getting sick too.  Also, I decided that I would clean my fridge over next few days (hasn't been done in years, so god knows why I think I need to do it now.  I think I am afraid of being so tired that I won't ever be able to help out with keeping up the house).

    Sandra, what a great idea to help get a "kit list" going.  Let me know if you do and how it goes. 

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  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    Did everyone get their teeth cleaned?  I heard that is a definite before starting chemo.  I'm trying to get an appointment but am on a waiting list.  How was everyone's day?  I'd love to hear updates on everything or status quo :-)

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Just checkin' in with my girls!

    skigirl, Lauren, LeeA, how did everything go today?

    How's everyone else? I hope you're all getting sleep -- even if it does mean Better Living Through Chemistry, MamaK! When I couldn't sleep at the beginning, I used Ativan instead of Ambien. Ambien knocked me out, but even in my sleep I was still stressed out. I took an Ativan instead and even my dreams were happy. :) What have you all done to make yourselves happy lately? I'm thinking I should find better entertainment than bad television. lol

    Lauren, I heard that about teeth cleanings, too; it's something about stirring up too many little bacteria. And, dang it, THAT's the phone call I've been forgetting to make all day!

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  • klaudiak
    klaudiak Member Posts: 25
    edited January 2013

    I have my teeth cleaning appointment tomorrow and my TC starts on the 7th.

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  • MamaK16
    MamaK16 Member Posts: 8
    edited January 2013

    Just FYI, when I went to dentist, I had 2 cavities and they put me on antibiotic for 4 days when I got the fillings just to be safe.

    Bryona-thanks for the suggestion on the ativan

    Skimommi -and anyone else starting tomorrow, praying all goes well!

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Hey y'all!

    Hope everyone is doing well!! Been a crazy day around here, but a good one. Finally got a bunch of things nailed down. 

    Tomorrow is my first "fill" apointment with my PS for the expanders that went in 3 weeks ago w/ my double mast. (Sure that's going to feel just fabulous. LOL) And then an apt with my accupuncturist. Yay!

    Friday my port is going back in. (Oh joy)

    Tuesday I'm getting my teeth cleaned. 

    Wednesday Chemo starts. Cytoxan and Taxotere are my drugs. 

    I'm waiting for a call back form the cold cap rep here locally in the Dallas area. The guy I talked to earlier who was in london said that with my age and the chemo meds that I'll be taking I have a 90% chance to retain my hair. ??? Well..... I have a bazillion questions for them, but it might be a good alternative to try. Anyone have any thoughts? I love opinions..... 

    So.... what did I miss today? Been thinking about y'all but was swamped with phone calls,  the boys and their stuff with Christmas Vacay and all.  Big hugs!!

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Port went in today. I was sedated but awake through the whole procedure. It took more time to hook up IVs and stuff than the actual procedure. I had zero pain through it all. I am sore now that I am home. Really sore. Going to sleep in my recliner tonight. Kinda excited about having this thing in now so I can keep moving forward. Friday is my first treatment!

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

    Ciao ladies! Damn, I kept meaning to make that call too . . . to late now. Guess I'll see my dentist post chemo.

    Picked up my meds today. Was pretty calm all day, but now I'm getting a little anxious. Could be the steriods kicking in though. Almost bought some melatonin while at the pharmacy, but put it back at the last minute. I don't want to stir the pot too much before knowing what to expect. Still debating on whether to take the Ativan to be sure and sleep.

    I've been thinking about this wig thing so much, that I decided to pop into another botique today during lunch. Wow, what a downer! I stood around for 20 minutes without a greeting of any sort. There were two ladies helping other's try on wigs, but they never even bothered to say "Hi", or "We'll be with you in a bit". The owner of the place walked in (I know that from the website) and still completely ignored me. An older women came in after me, and the owner helped her pick out a wig and cashed her out. When I approached the register after the lady paid for her wig the owner walked away - still never acknowledging my presence. Then another lady walked in and the owner came around to help her right away. I swear I showered today. I was even dressed nice. And it is so disappointing because it appeared to be such a nice place and had some very attractive wigs.

    I'm struggling now with whether I want to do the pixie cut or not. Why go so short if I may end up with a wig the same length as my hair is now?!? I just don't know. Maybe some more wig hunting soon will help me figure it all out. I wanted to do the short cut because this is my chance to have fun. But will it be that much more awkward to show up to work with short hair and then shoulder length hair again? Skigirl, what length wig are you going to sport?

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

    Lauren15 hope you get results before the weekend and the news is good!

    LeeA how was your day? Hope you are feeling good and can rest through the weekend.

    Skigirl glad the port placement went ok. I'm sure the discomfort will subside soon.

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Hi Amrdbit,



    I had my first fill last week and it was a breeze! Just a little tightness this week, but so minimal...the fill itself took less than a minute. I'm sure you'll do great, esp coupled with the accupuncture! I'm also in full planning mode for the cold caps, and have 'interviewed' 3 gals local to me who had great success. It is costly and takes effort, but so worth it...we've been through worse, right? I just sent a PM to sebm9 who will send you a write up of her experience as well if you reach out to her. I found a lady in MN that is a technician for the caps and am planning to fly her in so she can train my team and take us through that first session...i'm told it keeps you very busy so the time passes very quickly. I'll be interested to hear what you think. Also consider Latisse to keep brows and lashes. Good luck tomorrow!

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Skimommi, 

    I'm so irritated about your experience at the wig store today, :( Why are people so darn rude? Sheesh! Did you see Tuesday nights episode of Parenthood? The whole episode had to do with one of the characters losing her hair and the wig thing. She shaved her head and all too. It hit pretty close to home, but it felt good to watch, regardless. 

    If I don't do the cold cap thing, I will have fun with the razor and then shave it. But.... I wouldn't do it till I have a wig. That would cut down on the showing up with short hair and then longer hair thing. If I buy a wig it will be a longer one, just like my hair now.

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Hope49, Great idea about the lattise! I asked my husband and he said I didn't lose my brows or lashes last time, but that my browns thinned out a bit. (Rest of my hair was gone) I had thought that was the case, but figured it was good to ask him. I knew he'd remember.... since it wasn't his head that was full of chemo brain. LOL!! Since every chemo is different, I'll ask for sure about the latisse. Also, I've heard biotin is great to help hair grow back in thicker and fuller. Maybe it works, maybe it doesn't..... but it can't hurt, I guess. :)

    I'll send her an email to check out her experience. Any and all info is great. I figure the expence is totally worth keeping my hair. Also, wigs can cost a bazoodles of dollars..... so..... I think it wuld be worth spending it on my own hair. Keep me posted on what you find out about the cold calps and I will too. Maybe together we can gather all of the needed info. When do you start chemo?

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

    Yes, I did see that. I don't even watch regular tv most of the time, but just happended to be on that channel when it came on.  Here is one thing for sure . . . I don't want to be in the bathroom bymyself crying and so depressed like that. We need to have a little fun with it. It is inevitable, so bring it!

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    I was thinking the exact same thing. Plus when she woke Adam up in the middle of the night and when he was sound asleep.... no wonder he kind of freaked out. LOL! Fun.... definitely fun is the way to go.  

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Amrdbit & skimommi,



    I will keep you updated about the caps. I don't know my start date yet, waiting for some test results but thinking in the next two weeks, so I've been gathering my supplies and getting educated while keeping a very positive outlook! I did also see a wig maker in my area, and he was wonderful...so caring and has a great process to ease the client into losing hair - he does 3 haircuts to take it nearly down to the scalp but gradually so it's not so shocking. I won't be doing that, but did go through the 'planning session'. The wig is custom made down to some 'roots' showing, so he took pictures and hair samples to ensure it's really as close as possible to the original. I see it as my insurance policy...if I invest in it, I won't need it mentality. And I figured I can pop it on if I have a bad hair day once I'm done withbtreatment buta can't yet color/cut :). I, too have been watching Parenthood but have skipped the last 2 as it's just a bit too real for me right now. Have a great day tomorrow and no matter what happens or doesn't happen, stay in peace and enjoy the day!

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Hope49, 

    What a great idea about the wig. I was thinking the same thing. I love having it as a just in case kind of thing. I'll keep you posted about what I find out about the cap, and all of that! I'm off to bed now, as I'm jsut exhausted and I've got an early start tomorrow to the accupuncturist and then to the PS. (Of course they can't be on the same side of Dallas, so lot's f driving. LOL! Have a wonderful day tomorrow and I'll check in when I get back. Sweet dreams y'all! 

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  • Caya
    Caya Member Posts: 971
    edited January 2013

    Hello Chemo Gals of January 2013 - just thought I would pop in to let you know that I was a chemo girl in January of 2007 - six count'em six years ago! A group of us started a thread like this then, and a small group of about 10 still keep in touch.  The ten of us are all doing well, no recurrences... some of us, me included, did Herceptin as well.  Many of us just finished the 5 year mark of anti-estrogen treatments (Tamoxifen and/or an AI like Femara).

    You can do it - my best bit of advice is to rest as much as possible, take the anti-nausea meds BEFORE you start feeling nauseous, and let your friends/relatives/neighbours help in any way they offer - pick up your kids at school, drop off some casseroles for the freezer, etc. 

    Wishing you all the best

    Caya

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

    Caya!  What a great post!  And you are a triple positive!  

    Wow, I'm using so many exclamation points - I'll blame it on the first day with the new chemo Laughing

    I'm definitely taking a screenshot of your post for the FEEL GOOD file on my desktop. 

    It's time to pop my first anti-nausea med...

    I wonder what the coming days will bring but I'm just going to try to stay positive and hope for the best...

    I hope everyone is having a good day/night!

    --

    Editing to add (ETA):  I just sent a screenshot of your post to my husband, Caya!  

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    FIGHTER , I don't have much info on vitamins in general but I do know that we need a therapeutic level of vitamin D3. I had a D3 level done in May which was first I ever had. It seems medicine has learned in last few years of importance of D3. My level was 15 and my once wants it > 32. I have taken 5000 IU daily since May and found out today that I am only 25. Have to call doctor to see what they want me to do. It can be challenging to get up for some people. Ask doctor about vitamins, I read somewhere that they just want us to take a Multi Vitamin. I take B-12 inn every month so I have to ask about it.



    About ports I have a friend with Lupus and Myasthenia Travis and has arm port and loves it. She has never been able to get diseases in remission and has to get infusions frequently. I had port placed in chest last Friday and no problems until 4 am Sunday I woke up in horrible pain whole right chest swollen, warm, and red finally to ED infection versus cellulitis. Potent antibiotics and better in 24hrs. In hospital 3 days sent home today on oral med. Probably cellulitis as my WBCs never went up and no fever. Very scary that they would have to remove port and it hasn't been used yet. So right chest miserable and left chest still swollen probately lymphedema in breast and a seroma and cording in armpit. CRAZY!! And I haven't started chemo yet. I am pleased that for the most part I am rolling with the punches. I seem to have a good crying jag about once a day get over it then soldier on.

    My husbands computer died and he is using mine I am posting from my Kindle which is taking forever. I am about to steal it back.

    hang tough all,



    Sheryl

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

    Sheryl, that sure is a lot to go through but I really admire your attitude, i.e. "rolling with the punches" and "soldiering on!"  Will the infection/possible cellulitis delay your chemo??

    I hear you on posting on alternative devices.  I have an iPad but when it comes to speed-typing, it's my laptop or nothing.  I heard a wild statistic the other day regarding the number of texts the average teen sends and I was amazed as in "how do they DO it??"  Those touch screen pads just aren't conducive to my not-so-dainty fingertips!

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  • ablydec
    ablydec Member Posts: 124
    edited January 2013

    Hi, I would like to join the January group.   I am scheduled to begin my chemo next Friday, Jan. 11.  I had BMX 5-6 weeks ago, and my md thought I could wait until after my daughter's wedding this week (:) ) to start chemo.  I'm set to begin TC-H.   I just met with the nurse practitioner today to hear the whole run-down.  

    I actually had chemo once, 20 years ago, for Hodgkins (ABVD), and although it wasn't fun, it was manageable, and best of all, I got better and have been healthy all this time (well, until now).  So I think/hope this will be manageable too.   Shoshana

    P.S. Quick question: do any of you know of anyone who brings the "Neulasta" (to prevent low WBC count) home to inject it themselves?  

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

    Welcome, Shoshana.  I just had my first chemo TX today so reading your post this evening regarding your experience twenty years ago provides a great deal of hope/encouragement.  Thanks for sharing. 

    You're starting TC-H so I'm guessing you're at the very least Her2+ or possibly even triple positive (I'm a triple positive and so is Bryona and powermom and Steiner - although powermom is a December chemo start - as is Steiner).  If you're triple positive you might want to check out the triple positive thread as well.

    Great news that you were able to schedule the chemo after your daughter's upcoming wedding!  

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  • ablydec
    ablydec Member Posts: 124
    edited January 2013

    Thanks.  I am triple positive.  Actually, now that I see people sharing their medical details, I decided it's ok for me to change my settings to "public" also.  One more step to making this whole illness less drastic in my own mind.  :)

    How was your first chemo?  How long did it take?  Feel good!

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

    Hi again!  

    Our diagnoses looks very similar.  My tumor was 2.5 cm but I had a .5 mm micromet in one node.  You've also had a BMX on both with tissue expander placement.

    Today's chemo seemed to go fine.  My husband went with me and we saw someone from this board who has become a real life friend.  She is also a triple positive (Relda).  She has been so incredibly supportive and helpful and she's just great to be around.  Our
    get-togethers are always at the Disney Cancer Center (my husband calls it the 2nd happiest place on earth Smile) but we need to branch out to have lunch or something instead of hanging around the cancer place together!  

    I really love the Disney Cancer Center.  The medical professionals are so helpful/positive/upbeat and the facility is beautiful.  When we left today I was struck once again by how beautiful the lobby is . . . a large flowing fountain and it's just been designed to be a very peaceful place for cancer patients.  So, all in all - it went fine.  I'm trying to stay positive and I keep telling my husband "one down - five more to go!" 

    Are you doing a course of six treatments? 

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  • Amrdbit
    Amrdbit Member Posts: 114
    edited January 2013

    Shoshana,

    Welcome! I am in a very similar boat. I had Hodgkin's lymphoma 18 years ago and did chemo thing then as well. (ABVD was one of the regiments.... The only one my husband and I cant remember. Lol! They changed my drugs after several months.) Hmmm......? I always knew I was at an increased risk for BC but never in a million years did I really think I'd be doing this shit again. I had my double mast 3 weeks ago and on Friday ill get my port put back in. Then Wednesday ill start.... Ugh..... Chemo. Blah. So sistah, it seems we will be riding this crazy train together. Thank goodness for this Awesome site and all of these wonderful women. I wish we all could have all been connected for another reason, but luckily there is this wonderful support system that wasn't around 18 years ago. Again.... Big welcome to the group! Deborah

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    Whitetiger4 –  Hope your treatment goes well today.  I start tomorrow with the same mix of chemicals.

    Skigirl72  - Looks like we will be hitting the same cocktail bar tomorrow.  I am also excited/anxious to get this started.  After tomorrow, we will have one less treatment!

    SherylB – I’m up the road in Jacksonville, which should make it easy to send good vibes to each other even when we have chemo brain!  Sorry that your port went rogue on you. 

    Lauren15 - Glad to have a third member of the Florida contingent in this club.  My hair has never cooperated, so I'm not going to miss the daily styling fight.  I am going to set aside the money I usually spend on cuts and color for next few months.  It is going into a post chemo/radiation spa day that will have every variation of pampering treatment possible. 

     --------------------- 

    Today’s celebration:  I am going to finish beading a necklace today.  It has been a long time since I had time to bead.  I think I will set a goal of having a new piece of jewelry created for each chemo treatment.  It’s a way of marking the passage of time, and, at the end,  I will have eight new highly symbolic pieces of jewelry.

    Tomorrow's celebration:  One less chemo treatment!

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

    Ciao bella Shoshana! Sorry to have you hear for this purpose, but glad you can share in all the support. You've had quite a run, although you may not feel like 20 years was by far long enough. Wink My onc was looking into having me do the Neulasta at home. Insurance cost was unreasonable though, so I will have it done at the infusion center. Two great trips for me. Wink

    Zorina, I love that you are making great use out of chemo time.

    Ativan is my new BF (hopefully on these boards that abv doesn't mean boyfriend). I haven't slept that good in 4 months . . . ever since dx. Why don't that give that to you sooner. Alghough I never was anxious going into surgery. That was actually my "calm" time, if you can believe that. And I don't know if it was nervous energy after dinner or the steriods, but I started scrubbing my bathroom like I was in the nesting stage of pregnancy.

    Today's ladies, I'll meet for cocktails later. Order me up three, stat.  A dear friend is taking me. No drinking and driving for us chemoholics. So on the way to the big, cold bar I am going to buy us a couple of lottery tickets. rock on!Rock on. Don't forget to drink lots and lots of water to wash out the toxins. Hope it helps with the hangover.

    With all the prep I had you'd link I was more prepared. Forgot to get in with the dentist, forgot to hit the salon for a good set of gel polish. Guess I am doing them this morning to try and head-off the cracking. I wonder if I should try icing too.

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

    funny pictures

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