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Post del by CommandoBarbie
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Good afternoon!
Marsha -- What a wonderful story. I can picture the two of you -- walker and bald head -- at the bar!
Maisy -- I read some where that dose-dense AC (every two weeks) is more effective than AC (every three weeks). However, chemo brain means that I can't remember where.
Melanie -- You don't look old enough to be a grandmother!
Caryn -- Love the red wig! I didn't have the guts to do that much of a change. I did go shorter and got rid of the grey with my wig. Today, I felt well enough to take my son to swimming and basketball. His swim teacher and two basketball parents complemented me on my new haircut!
I tried the baby wash (have some for my son), but it was making my scalp too flaky. I got some Paul Mitchell Tea Tree Hiar and Scalp treatment, which is working better.
Freethought -- I go commando around the house, too. Haven't gotten the guts to do it in front of ds or dh!
Sybil -- Too funny about the birthmark. My son has one on his bum. When he was a baby, it looked as if we hadn't cleaned him up during a diaper change!
My son has informed me that he doesn't want to see my bald head, but he does want to see my wig when it's not on my head -- LOL!
Bar reservations so far:
Monday: Phyllis
Tuesday: Hillary, Catherine, maybe Maisy
OK, gotta go cook dinner ... more later ... still waiting for more bar reservations!
-- Hillary0 -
I'm up next Thursday for AC #3. I haven't been around much, actually I've been lurking now and again (as opposed to posting). I feel like I joined the party late and everybody's a few drinks ahead of me.
As with Carryn, I haven't had surgery yet but I do get to see my surgeon for the first time since my Dx next Tuesday. I can feel that the mass is smaller, softer but...not gone YET.
I sheared my hair to 1/4 inch in length one week after my first treatment. Last week, I shaved my head and have been wearing a wig that gives me a headache. I'm hoping that it'll stop hurting when the hair is all gone, which it seems to be doing in a hurry tonight. I got out of the bath, slathered oil on my head and body lotion on my skin, put my glasses on and realized I had little eyebrow-length hairs all over my neck, ears and shoulders. ARGH! Try getting that stuff out of lotion. I brushed and brushed and brushed myself with a towel so, now, I'm beet red. Shite! Just be gone already!
Anyway, I'm in the market for another wig. I figure I'm going to use the wigs as accessories...long blond hair one day, short curly red hair the next and so on...you get the picture.
I'm going to read the back postings now to see if I can get caught up on how / what everybody's doing.
Great vibes on this cruise... I'm loving it (all things considered)!0 -
Twink, you are not behind at all. I have #3 on Wednesday, just one day ahead of you. Hillary.....make my bar reservation for Wednesday! Haven't had a cosmopolitan (sp?) in a while so I think I'll have that next week as I think the glass is so cool looking..............Marsha0 -
Good morning!
Twink - You're not behind, you're ahead of me! My # 3 is a week and a half away yet! My tumors not gone yet either, but what a great feeling to actually feel it shrink! I'm accessorising my wigs too. Tomorrow will be the first day to wear one to work.
Catherine, I loved your messages. And the same goes for you in Phoenix! Heck, we're practically neighbors!
Marsha - I loved your story. You painted such a picture with your words. I treasure the time with my best friend, and I'm so lucky, she's only 6 houses away.
Another 88 degree day today. Summer in AZ is almost here. Yes it's hot at 110 + but it's always been my favorite time of year. We are redoing the pool area, and I just cant wait to entertain with some of my new sun hats!
Have a great day everyone and smooth sailing!
Carynn0 -
Bar reservations so far:
Monday: Phyllis
Tuesday: Hillary, Catherine, maybe Maisy
Wednesday: Marsha
Thursday: Twink
Twink -- I had the exact same problem with the hairs. I felt like a porcupine with the quills shooting out. It took about three messy days, but eventually they mostly fell out. I found a washcloth in the shower worked best.
Also, if you are in the market for a new wig, you should check out the TLC website from ACS. The website is: http://www.tlcdirect.org
I'm really pleased with the wig I got from them and it was cheap -- $40. I'm probably going to get some bangs or falls to go under hats for the summer. The prices are cheaper than anywhere else I've seen.
Two more days of feeling better before my bar appointment #3. Is anyone else doing taxol after the AC?
-- Hillary0 -
Good morning Hillary! I've got a ton of stuff from TLC. Loved them too. Fast shipping as well.
I'm doing taxol after AC. Two more AC to go before I start. We'll have to compare notes.
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Sign me up on Wednesday for AC #2. I am behind most of you but it helps to see what I have to look forward to!
Carynn, I used to live in Arizona, about 15 years ago, those warm, sunny days sound so good right now as I sit in central Illinois!
Wendy0 -
When my hair started falling out big time (16th day) I just kept running my fingers through my hair clamping them a bit and put it in a bowl till it stopped coming out. By then I was just left with the little fuzzies. My longest strands were about 3 inches long as I already had my hair cut short a little before my first and only chemo dosage.
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Hey Hillary, you and I are on the same schedule it appears. We have the 2 more AC then both go to Taxol. What is your taxol routine going to be? DD x4? My onc nurse wants me to do weekly x12 smaller doses cause "You are a wisp of a thing" as she says. I don't know I would sure like to git r done in 8 weeks. Apparently neuropathy is a big concern. What do you thinK? Marsha
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Hi again!
Wendy - my hubby is from Kankakee and most of his relatives are Fighting Illini. Is it warming up yet there?
Wow! Lots of us with two to go til Taxol. So glad were all here for each other.
BTW...I've so enjoyed talking with everyone, I threw a hotmail account up. So PM or email me anytime. As we get thru this, we've all got to figure out a way to plan a reunion of sorts. Would be a wild and crazy group!0 -
Hi Girls, I'm from the March Chemosabe Cruisers and started DD AC on 3/5/07. I've learned it's a great way to know what's coming up by reading your posts. Just curious, I'm trying to get an idea on when hair starts falling out on dose dense AC...my oncologist says after about the 14th day. Can anyone let me know their time frame?
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HI marsha2664 -- it's been more than 20 days for me and my hair has only really started falling out this weekend. Everybody's different though; I was told it would start to happen around day 14 too but it took another week for me. In any case, I did the 'preemptive strike' one week after my first treatment. I couldn't stand the thought of my long hair falling out in clumps.
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Marsha? I think you and Sheila need to go to the Survivor tv site and get yourselves something to wear to the bar the next time you guys go!
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Taxol DDX4 for me too after two more AC. Not sure though whether surgery will be scheduled before the Taxol. I guess I'll find that out from the surgeon next week. Carryn, I assume you're also pondering your options...lumpectomy or mastectomy? It's a little daunting isn't it? Hilary, I can't recall, are you also doing neo-adjuvant chemo?
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Marsha2664 -- I was 14 days on the dot. The hair started coming out by handfuls in the shower, right before my second AC. I got it buzzed that day. The prickles started coming out a few days later -- what a mess. Best to use a washcloth in the shower. I'm expecting the remaining prickles to come out a few days after AC #3.
Trink -- I had a lumpectomy and SNB prior to chemo. I'm supposed to do radiation after the taxol, but still haven't decided whether I'm going to do bi-lat mastectomy.
Marsha -- I'm doing dose-dense taxol. My oncologist didn't give me a choice about it. I don't know whether the neuropathy is different with dose-dense or weekly.
Bar reservations so far:
Monday: Phyllis
Tuesday: Hillary, Catherine, maybe Maisy
Wednesday: Marsha, Wendy
Thursday: Twink
-- Hillary0 -
Been awhile since I posted. Have been reading and trying to keep up with everyone's news. Been crazy around here. My brother died unexpectedly on Monday. Very very difficult week. I'm supposed to get new port on Tuesday (hope this one works) and add me to the bar reservations for Wednesday. Hope everyone is well. Your postings help me get prepared. Thanks so much!
Mary0 -
Hi Marsha from March! Nice to meet you! Ahh, the hair! I have (had!) very fine "baby" hair. I had made up my mind that off it would come when I got the first handful. Well, that never happened. At day 10 (I'm doing DD) I started getting showered by what seemed to be millions of falling strands, no handfuls. Day 13 fixed my hair for work with no problem. Got home and tried to freshen up for dinner and it would no longer hold the curl and the flying strands were out of control. Gave up and wore the wig to dinner. Day 14 went for tx # 2 and was unable to do more than just rub some gel in it to try to look presentable. My Onc gently said, honey, its time. Day 15 DH tried to shave it where I'd have about an inch left, no go. Too many bald spots, and off it came. And you know what, it was not big deal! I swore no one would see me bald, and then I posted my pix here.
Hi Twink! Yup chemo first, but you know what, havent given the next step too much thought. I firmly believe this protocol will allow me to have breast saving surgery. And if not, ok then. Give me a new one. I dont mean to sound so blase about it; it's just the conclusion I've come to. When I was little, my dad was a double amputee with two prosthetic legs. I think back to what it must have been like to lose limbs, and suddenly a gland doesnt seem so important. So I'm proceeding full steam ahead with the thought of the lumpectomy, and if it doesnt work out, I will make the next alternative work!
Off to face the day. See you all later:)0 -
Good morning everybody, glorious sunday here, after a good rain last night (rare in Denver), and the yard is turning greener every minute... After AC, I go to taxol, too (DD every 2 weeks), but in the form of abraxane (albumin based, administered in 30 minutes) since I am in a clinical study, and got randomized in that group (the other group gets regular taxol). I also continue the Avastin (those drugs are given to metastatic cancers already, and cancers other than BC, and the purpose is to have them approved for early stage BC -- I am stage IIa, 2 sentinelle nodes+, grade 3. IDC). Neuropathy side effects are to be expected with abraxan, too... this is a bit of a concern to me, having had polio at age 5, my left leg is not very strong, half the size of the right side between the knee and the foot, and I sure hope it's not going to weaken it too much and prevent me from walking and biking, which I do with no pain nor fatigue so far...)
Well, we'll compare notes when we get there since we are more or less all on the same schedule...
Enjoy those beautiful days we have left before the next hang over...
Hugs to all,
CatherineH0 -
Mary -- I'm so sorry to hear about your brother. Are you coping OK? Don't be embaressed to ask for help. I'm on lots of anti-depressants: we figure that I was still suffering from several deaths in the family when I got diagnosed, and it triggered a massive depression.
{{{{Hugs}}}}
- Hillary0 -
It looks as if a lot of us will be around until June and will be able to share the neuropathy joy that is taxol!
Bar reservations so far:
Monday: Phyllis
Tuesday: Hillary, Catherine, maybe Maisy
Wednesday: Marsha, Wendy, Mary
Thursday: Twink
-- Hillary0 -
Oh Mary, I'm so sorry to hear of your loss. Please know that you are in all of our thoughts and prayers during this especially difficult time.
Since so many of us have ports without issues, I'm betting your new one wont give you any problems. You should ask them if there's a "lemon law" for ports.
Keep us informed. We're all holding your hands Tuesday and Wednesday.
(((((Mary))))
Carynn0 -
Marsha; As usual, I loved your story...very touching. I have always lead such a hectic and busy life and one of the "gifts" that I am receiving from this bc journey is I have time for calls and visits from friends and family. I also hope that I will be a more sympathetic and understanding human being from this experience. I can be so analytical at times and I see that changing already. One of these days, I think I will sit down and make a list of the "good things" that have come from this challenge.
Mary; I am truly sorry for your loss. How difficult for you and your family. Please keep reading here, even if you don't have the chance to post much. We will always remember you when you come back.
Catherine; You are so "literary"...I love reading your descriptive posts. I was feeling numbness after this last tx. I wondered if it was because I did not like the taste of my L-Glutamine mixed with cranberry juice for the 6 days following tx. As soon as I got back to drinking it, the numbness left. You might ask your onc if it is okay for you to add this supplement. Maybe it will help.
Sybil; I also discovered I had a strawberry birthmark at the base of my head!
Twink; I did what Hillary did and scrubbed my head with the washcloth. Worked well. I also get a headache with the wig. I haven't worn it for almost a week. I got some new caps in from Headcovers and I love the denim bucket hat! It covers very well and even looks nice. I am even going out in public with just it on. I like that I am getting to this point with the hair issue. Also, I will get #3 a week from Monday...you're pretty close with most of us!
Hillary; How sweet of you! I started young. My first child was born when I was 18. He's 26 now! My favorite "job" is being NaNa. I can't tell you what a thrill grandkids give me...DH is totally hooked also.0 -
Ok girls. New avatar is the blond wig which is exactly how I had my hair cut prior to starting chemo. So there you have it. 0
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Love it! No wonder you got the compliments!
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Mary I am so sorry for your loss. Goodness as if the cruise you are on isn't enough, to actually lose a loved one makes my heart sad for you. I hope you will let us help you cope......please post often and let us know how you are holding up. Big fat hug going out to you! Marsha
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Marsha, it was day 15 for me in big clumps. Had it shaved. I could not stand the hair falling out. I have a wig but actually don't like it too much-it itches.
Mary, our thoughts and prayers are with you (((((Mary)))))) How difficult for you. We are here for you.
I made the big move today and took the cap off at home and have been going topless since yesterday. My kids took it well and don't seem to be as bothered as I thought.
Today is my first phenergan free day since Wed treatment. I feel like a zoombie with it but the nausea is worse! I actually got up and did stuff around the house.
Good luck to everyone stepping up to the bar this week.
Karen0 -
Good morning all
I tried to reply over the weekend but for some reason I could not.
Reserve me a place on Thursday presuming all goes well when I see the onc on Wednesday. Of course my Thursday morning will be Wednesday afternoon evening for those in the US.
Marsha2665 my hair started to go on day 12 and by day 15 all I had was fuzz. Days 12 and 15 saw great falls. On Friday (15) my clipped hair was falling like rain so I went and had a shower- it just fell out. A friend who I showed yesterday commented that what I had left was like baby hair.
I have been going around minus bare headed in the house. DH asked what I was going to do when some-one came to the door. Said I would decide when it happens but if I disappear he knows I am probably putting on 'the beastie'-my wig. Dear neighbours asked me where my crystal ball was when I popped over to visit on the weekend. I had a scarf tied gyspy style round my head.
Mary, you don't need more stress at present. Love and prayers coming your way.
Marsha I loved the story - it was so funny.
It is now interval so I must go and get a drink as I am really dry.
Will get on line later.
Alyson0 -
Mary, I am so sorry for your loss and my thoughts are with you and your family. Please stay with us for suppport and let me know if there's anything I can do.
I haven't written for awhile but have been trying to keep up with everyone's postings. After A/C #3 this past Tuesday, it's been harder to focus and has been increasingly difficult to write. The stories and attitudes of the women on this board are such a source of inspiration.
Marsha, your story was especially moving as they always are. And Carynn, I had a similar experience during my Chemo visit last Tuesday. Most of the rooms in my facility are private but there are a number of overflow rooms that have 3 chairs. Because I'm an "old timer" now, I was put in a room with 2 other women, one women was behind a curtain chatting with her friend. The second woman was quite a bit older than me and by herself, British, and had been teaching in Egypt up until her diagnosis 2 years ago. We ended up having a wonderful time, talking about life, love, and friendships. At the end of our time together, she said she felt we had a connection/aura as sisters. And I realized how wonderful it is to stop trying to control your surroundings (I want my private room with tv) and let these pearls into your life.
Catherine, I was glad to see you post. I was missing you. I'm also doing the Taxol DDx4; I think I may be the first of our group but I'm not sure. I know neuropathy is a potential side effect but I thought the % of people affected by it were low. Am I wrong? It's on my list this week for my onc.
Karen, I wish there was something that your onc could do for you. It's not fair.
Hillary, I was thinking back to one of your posts after you had your MRI done. My surgeon had never scheduled one for me but, after voicing concerns about the overall health of the "girls" (thanks to this board), I'm having one this Wednesday and I'm so scared that something else is going to show up. I've already had a lumpectomy (two because the margins weren't clear) and I'm also keeping future surgery options open.
Good luck to all those cruisin' this week.
Love to all,
Linnie0 -
I have #4 (and last for this round!) on Thursday!
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