Starting chemo January 2009?

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  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited January 2009

    Hi everyone,  well my treatment starts tomorrow and I am beginning to get a bit anxious.  My wig came today and I am not sure about it yet.  I think after my hair goes, it may fit better and I will be glad I have it, but at this moment, I am having a really hard time with it.  

    My oldest son came from RI to stay for a while so today was a really good day.   It will be good to have him around during this first round of treatment.  

    I am going to try to get some rest.   Good luck to anyone else out there starting this week or soon.  

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  • marymoir
    marymoir Member Posts: 245
    edited January 2009

    Hi everyone.  I'm new to this forum, but can relate to so many issues you've been discussing!  Like Lisa, I also had my treatment delayed by that big breast cancer symposium -- the oncologist that almost everyone advised me to see was one of the "head honchos" at that conference, so I had to wait an extra week to see him.  I know, a week is not a long time, but for me the worst part of all this has been the seemingly-endless waiting for test results, esp. over all the holidays b/w my Dx and today!! 

    I also am having a really hard time dealing w/ the impending hair loss (1st chemo treatment is Jan. 13).  I never realized how much of my self esteem was tied up in my hair (like yours, Lisa, it's long, thick, & blond, and my husband of 18 years loves it!!).  Luckily, he is an amazingly caring man, & having him support me so much already during the good, the bad, & the ugly of this disease has really shown me that he loves me for more than just my appearance.  My kids (15 & 11) have already expressed some concerns about seeing me bald.  My daughter, the teenager, even said, "I don't want to hurt your feelings, Mom, but I really don't want to see you bald," to which I replied "Honey, I don't want to see me bald, either!!"  I did have them go with us to pick out the wig, & it seemed to put them more at ease.  Now I'm really just dreading my 1st "public appearance" w/ my artificial hair, but I'm hoping I can adapt to this new chapter in my life fairly quickly, as the one thing it's taught me so far is to keep my priorities sighted on getting healthy & wiping out this nasty bugger.

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  • kt57
    kt57 Member Posts: 425
    edited January 2009

    Jess - No, I'm a Cheesehead from Wisconsin. I live in Ashland, right at the base of the pennisula that juts out into Lake Superior.

    AZ Stacey2008 - you take care.   work can wait, esp if your boss tells you it can.   Needing antibiotics and fluids is common when you are on chemo... it doesn't mean anything is going wrong, just means you needs to take special care to get through this first cycle. 

    Kathy 

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    Oh, Stacey,

     I'm so sorry that you have a virus on top of everything else!  That just sucks!

     But, I'm glad your boss is so supportive!  Your poor husband......I know there  ARE support groups for husbands!  Do you have a wellness community or perhaps thru your hospital.  I got the book "the breast cancer husband" but haven't read it yet and neigher has my husband.  Maybe take a look at it on amazon.com?!?!?

    Hope you're feeling better soon!

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  • ddlatt
    ddlatt Member Posts: 448
    edited January 2009

    re: the AC/T versus TC question:

    http://www.cancernetwork.com/breast-cancer/article/10165/1352529 

    my  med onc recommended AC/T for me because i am node-negative high-risk (family history, grade 3, triple negative, tumor 1 millimeter from chest wall and not clear margins)

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009

    ALO123... lol... we all "reluctantly" joined the club.... sorry you have to be here too but welcome.  If all goes as planned I will have 4x TC too starting on the 20th.  But, I am having yet another second opinion tomorrow at 2p.  Actually this will be my third opinion (on the AC vs TC issue).  I will aggravate every oncologist in town until I get the questions answered I guess. lol.  Strike 3 today for my other oncologist who still did not call me back after I left messages for the last 3 days.  Hmmmm... my gutt is telling me to go elsewhere...

    Kt57, good to hear about your eating and exercising and sounding "normal".. gives me hope I can do it.  My onco was 22... I will ask the onc too about TC x 4 or 6.

    AZStacey - yikes, sorry to hear that...hope you are feeling better....but your boss sounds like a keeper  :)  Yeah, the poor husbands... my wig came today and he told me it doesn't look bad (probably lying)... then he tried it on and we had a good laugh...... does anyone know if you can put product (like mouse and hairspray and stuff) on these synthetic wigs?  I know nothing about this...

    I noticed this site has chatrooms.. are we able to form a chat room just for this group... then anybody who wants can come into the January Jewels room whenever they feel like it?  That would be great... there seems to be so many of us... I'm having a hard time keeping the names straight...

    Welcome Marymoir!

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  • dpstarr
    dpstarr Member Posts: 9
    edited January 2009

    Finally met with medical oncologist yesturday. My hubby went with me, but I think he is having a hard time with it all because his usually very talkative self is being very quite about this issue.

    I start chemo next week with 4 treatments Taxorere and Cytoxan, then radiation and then anti-estrogen therapy. As with Lisalisa and Marymoir I have long hair that I have just grown out from very short! This weekend some of my clients now friends are going to cut my hair. I'm kind of looking forward to the girl thing because since moving to Oregon I don't have any family or friends (at least old friends) around anymore. But they are all rooting for me long distance.  

    Every night I read everyone day and it does help. I went into my appointment informed. I knew what he was going to say and it made sense to me (even though the dr. is just a baby, just had his 39th b-day) So I thank all of you for the information that I have received daily from al of your experiences!

    DeeAnn 

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Hi all:

    Marymoir--Glad you found us--your daughter sounds like my youngest (14). I'm going to have her try to sew up a scarf for me. I think they do like to be involved, especially when the spin is positive. One of her friends shaved her mom's head...I don't know if I could do that!

    Brenda: I'll be thinking of you tomorrow. If I made it through, so can you.

    Stacy:This whole "adventure" just stinks--hope you get better soon. I keep apologizing to by DH for getting b/c, which makes him crazy, but I know it's so hard for him. I keep trying to get him to go to a support group, but he's a social worker and I don't know that he's comfortable sitting on the "other side." There is a thread here for family/supporters..

    Holtbolt--good idea. I'm going to have the whole family put on my wigs and take pictures. I need a laught. I need to get my "styled" by someone who does it for free for us chemo-bald women. She didn't mention gels or such, just a wire brush or pick to style--and don't get near hot things with a synthetic like mine (it'll melt), so NO hot blow dryers. Who would've thought... (not me).

    Ddlatt--thanks for the link. Makes me feel better about my choice. I spoke with my China-educated accupuncturist at the cancer center (she's also a U.S. trained med. oncologist) today about my concerns and how I can protect my heart. She told me I shouldn't worry, even with my mitral vavle prolapse (and she looks outside the box, trying to balance Western protocols with Eastern wisdom), so I'm about 75% comforted...She said to take Co-enzyme Q10 after chemo and fish oil now.

    Good night all-kim

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  • dpstarr
    dpstarr Member Posts: 9
    edited January 2009

    Holtbolt, I think you need to listen to your gut. Sorry your having such a hard time talking to your onc, but maybe that's something to listen to. Hope you have better luck with number three.

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  • Alo123
    Alo123 Member Posts: 308
    edited January 2009

    Holtbolt....let e know what you find out as far as second opinion....I didn't even consider a 2nd opinion....I don't know why... I really like my Oncologist and he's the best  have access to in my area.  He also dels witha lot of BC....so please keep me posted....I'tt be like a 2nd for me....what was your Oncotype score?  Mine was 26.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    I had my big meeting with the Oncologist today and started chemo -so looks like I am joining your group!  I am on CMF for 6 cycles or 6 months - 1 week down, 23 to go!  So far I feel fine.  Of course it's only been 8 hours!

    From what I read you are a positive, wonderful group of women - sounds like everyone is weathering chemo well, which is really good.

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009

    Alo, I will... my onco was a 22.. I had the BRCA test too but mine was negative... which was really strange considering there's alot of BC in my family (mom, aunts, cousins).  Wow Hawaii... I'll get there someday... when all this nonsense is over! Smile

    Welcome aprilgirl!

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  • living4today
    living4today Member Posts: 215
    edited January 2009

    Hi to everyone!  Have been reading all your posts and although it saddens me greatly that we are all here, the support that is shown is just remarkable. I was dx on 12/7, had bilateral mast w/expanders on 12/24 (merry xmas) and will meet my onco next week w/chemo to follow.  When I first met my breast surgeon she had recommended lump w/radiation for mass in L)breast for IDC, she later called me and we discussed doing a bilat mast w/reconstruction, due to triple negative status.  Boy, did we make the right decision.  After surgery, found out that the left breast had 2 masses (one was 2 cm, one was 1cm)...all reports (ultrasound, etc) had only shown the 1 mass(these were triple negative)....and the right breast had  4cm DCIS (this was a complete surprise), didn't show up mammogram in October (this mass was ER+PR-HER2??)....so two different subtypes.  I keep thinking, you got to be kidding me...I am only 40, no risk factors and had truely tried to live a healthy lifestyle.  Well, enough about me...to my best guess, I will be joining the January group.  Thanks for all the great info.

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009

    Hi living4today...Merry Xmas is right!  You just had to have a little bit of everything didn't you.... GREAT decision on the bilat... that was your real Xmas gift.. that decision...sorry you have to be here but welcome to the club.  Hope you are feeling better everyday...

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  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited January 2009

    Hi living4today...great name by the way!    Holbolt said it best, sorry but welcome and you really did get a Christmas gift.  There is much support here for all of us. 

    My chemo starts tomorrow afternoon.  I am not sure that I am scared, but I definitely am anxious.  Hopefully I will feel well enough tomorrow night to post.   Stay connected and feel better.

    Kim, thanks for the encouragement.  Will let you know how I make out.     

    Brenda

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  • carlajane
    carlajane Member Posts: 23
    edited January 2009

    well...i'm down to 6 days before chemo #1 and i still haven't bought a wig...hat...turban...or cut my hair...i'm heading out today with a friend and she has promised to strongly urge me to come home with something...this will be my 2nd trip to find a wig...i've tried on at least 50 and felt ridiculous is all of them...however...i do not have a pretty head!...times a wasting...wish me luck...it feels terrible to be so wrapped up in my hair...i'm so ready to get past it!

    i have my fridge stocked...my medicine cabinet ready...my chemo bag ready...all from the great info i've gotten here...just need some NEW HAIR! 

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  • rsben70
    rsben70 Member Posts: 137
    edited January 2009

    hi carlajane don't worry you'll find something, you are not alone I have 8 days and do't have  a wig yet.  i think when my hubby picks me up at work we may go and look. take care.

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    Carlajane - no hurry!  you'll have at least 12 days post chemo #1 until you lose your hair!

    I cut my hair on day 13 of cycle 1 when it started falling out.  I was in a hurry as I was saving it to make a wig/underhair.  Had I not been trying to "save" my hair, I wouldn't have had to cut it so quick.  I cut it into a VERY short pixie i.e. 1/2".  Its falling out but I still don't have a bald spot.

    All this to say, NO HURRY.  You have time.  Besides that, do you have a winter/knit hat?  that will do.  That's all I've worn in public so far.  That, an a scarf tied like a bandana.

    You will be GREATLY relieved to get the hair thing over with though.  It was horrible for me but I can breathe again!

    Lisa

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  • Brenny
    Brenny Member Posts: 116
    edited January 2009

    BerkeleyKim

    Your synthetic wig has "memory" -- you shouldn't need mousse or hairspray--it should return to its original style.  You do need to watch exposing it to steam heat -- don't open the oven door with your head right there, don't use any hot rollers or hot curling iron, don't work on the fireplace fire -- all this will singe your new hair .  You only need to wash it maybe once a month (unless you have exposed it to smoke or something that you want to do more often) -- just swish it through water to which you have added a very mild shampoo (either wig shampoo or Dove shampoo)  Rinse it, roll it to dry, then put it on your wig stand and just rearrange to your style. 

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009

    Thanks Brenny on the wig info.... that helped.

    Welp, I just FIRED my oncologist and I've never felt better.  I had a great consultation today with a new one who was smart and sympathetic and answered all my questions.  I'm going with her.  This other dude can go back to playing golf or whatever ..... this is only after calling him and leaving messages on 3 consecutive days with no call back... so it felt good to cut him loose.  My gutt was telling me to find someone else and today I did and she confirmed what I thought was best for me... which is 4 (or 6) rounds of TC, no port, starting Jan 20th.  We also talked about removing my ovaries and/or starting Arimidex after the chemo.  We must block the estrogen!!! 

    Anyway, now that I have a plan I can work with... I am packing my bags and heading to Vegas on Monday for some R&R.  I will try to forget about what I have to do when I come home... if only for a few days...

    Hope everyone is feeling well today!!! Laughing

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  • Renrel
    Renrel Member Posts: 497
    edited January 2009

    Hotbolt- Fantastic!  You sound so positive and upbeat about your decision.  Confidence in your doctors is so important.  My first tx is the 21st so I will be watching you carefully for a forshadowing of my tomorrows. 

    I got my haircut today, regular mid length cut so I can have a nice picture taken on Sunday with my family.  I stopped in a local upscale second  hand shop but did not find much I liked in hats or scarves.  Maybe they looked find and I am just not ready to accept the no hair look (I had my hair tucked up into the hats. I bought one very soft fuzzy knit hat and one very colorful scarf since they were reasonable prices and I thought they may come in handy.  I also bought a few blank cards to use for thank yous. I recieved so many get well gifts while recovering from surgury and I have been awful about sending thank yous. It is weighting on my conscience.  And since I do love getting little gifts and cards I signed up with Chemoangels.com. They send a little card or gift every 10 days or so to help keep your spirits up.  

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    renrel - I signed up with chemoangels too.  I was assigned 2 angels.  I heard from one last week and am waiting to hear from the other.  It's fun!  the first angel sent a card, a bookmark and some tea.

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  • rsben70
    rsben70 Member Posts: 137
    edited January 2009

    what is chemoangels?  is it for anyone?

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  • sweeeeetpam
    sweeeeetpam Member Posts: 115
    edited January 2009

    Hi renrel, Where are you from in boston, I grew up in Franklin Mass, my husband in Stoughton my daughter is named Chelsea cause that is where my husband was born!! I was going to reply to your comment and now cannot find it!!  I find out my results tomorrow talk to you all then!! Best wishes to erveyone!!  Pamela

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  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited January 2009

    Well, I made it through my 1st treatment today.  It was nowhere nearly as scary as I had pictured.  I am feeling no side effects so far, but the treatment just ended about 2 hours ago.  Just waiting to see what comes up in the next couple days.  The Neulasta shot will be Monday because a 24 hour gap is necessary and we don't have that much time to get tomorrow.

    Hope everyone else is doing well.   I am going to try to rest tonight.

    Good night all.   (((((((((HUGS))))))))

    Brenda

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  • Alo123
    Alo123 Member Posts: 308
    edited January 2009

    Glad to hear it Brenda!!!!  Keep us posted on how you feel....there are many of us right behind you in the next few weeks!!!!

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  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited January 2009

    Alo, I will definitely keep you posted.  

    Good luck when you start.   I had A/C with test drug Avastin.  (Maybe placebo).  Won't know until they unblind.   I have 4 A/C every two weeks, then 12 Taxol every week.  

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  • Alo123
    Alo123 Member Posts: 308
    edited January 2009

    Oh ok....I think you'll be able to tell if you have a placebo!  I have a freind on Avastin.  I will start taxotere and cytosan (sp) 4X every three week on 21st...... gotta get a wig!!!

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009
    Alright Brenda! One down!  It is great for those of us who haven't started yet to hear that it was better than you expected.. thank you for that!!!  Have a good night sleep! Laughing
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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Hi all: Hope everyone is feeling well and trying to stay unstressed (if you have a trick...let me the stress queen know!!)

    Brenda: SO GLAD to hear it went well. Waiting for the 1st tx is so hard. I saw my Trial Coord. and Nurse Pract. today, and the Trial Coord was in a panic because my WBC is REALLY low (1.9), even with Neulasta. THey say it doesn't work for everyone. So I might have to get the other (Neutropenia?) for 4 days during my low days. Today is day 9. AND i just bit my cheek, which bled a little. So of course I called in and left a message to the Nurse. I hate having to be so paranoid.

    And now I won't get the letter to go back to work til they see if my WBC goes up on Monday. They tell me to relax, which helps the immune system. Right. Meditate? I'm just going to make sure I take enough Ativan so I can sleep tonight. What gets me is that I was feeling so good the last few days! More enegy than before my surgery.

    Thanks for listening to my whinning.

    kim

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