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Hi all....my modem has been out since Friday so posting this real quick in case it goes again, dang it.... If you don't read a BIG long one know I got booted! Marsha
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OK I am so behind! 40 posts to read, kept getting booted.
Well first of the hair is just coming out in clumps. Just went outside with a hair brush and had to keep cleaning it every 2 strokes. I am one good shampoo away from bald. Today is my 46th birthday, Happy Birthday To Me! You gotta admit, it makes a good story. So it is going today every last strand.
Freethought,Purple People Eater, PPE for short, too funny. Asshole drivers, lord I snorted coffee out my nose.
GI Jel, don't you worry about your security duties right now, we've got your back honey. When is your surgery? Big fat hug going out to you.
Karen, So glad you could laugh your way through the buzz cut. Don't worry about the wig and the 50 mph wind. I tried that with my convertible and if it wouldn't rip this real hair off maybe your wig will stick. You and Terry both, so sorry you are having trouble with the port.
Hillary, I have found the SE this time to be alittle stronger. Not terrible but bone ache (is this the Neulasta maybe it is my first shot), more tummy rumbling. Try to make sure and put something on my stomach every 2 hours. Lost 3 more pounds that I cannot afford to lose.
Maisy darlin', not a childrens book but an inspirational imagery book for breast cancer sisters! All you need is an illustrator (unless you also draw). I love your imagination!
Melanie, what a sweet grandbaby story. I'm sure they are happy to make the drive to see you and to keep up the weekly visit for you and her. SO glad your shoulder was not BC related! Geez I remember the PET scan, scared me to death till I got the clear.
Linnie, How the hell did you get so far ahead of me? #3 next Tuesday? $8,800?? How absurd is that?
Pat, Did you just switch to DD also? My 2nd was last Wednesdday and got switched and am so happy to be cutting some of the time off! I use to have one of those Davy Crockett hats! Should have told that old biddie or whoever it was that made the comment that the DC hat is all the rage in New York City! Oh and by the way Pat, I think the shaky hands when you go to pay for something is very simply a subconscious thought: "that person is probably very germy". LOL
Carynn I am THRILLED to hear the tumor is shrinking!! Reminds me of MacBeths' "Out Damn Spot". You are doing such a fine job keeping the ships logs.
Tropic, sounds like you are really throwing them back at the bar. Take it easy girl, beer backs are dangerous to your sobriety. HAHA
And Piper shame on you for drinking before noon! Oh that's right, it's 4 o'clock somewhere!
Sammie Kay (I love that name, my brothers name is Sammie and my middle name is Kay) wow you had quite the scare didn't you? Really glad to hear not a PE. ICU though? whew that would have GIVEN me a heart attack.
Happy Birthday to me, happy birthday to me, happy birthday dear bald girl, happy birthday to me! Hugs & Kisses, Marsha0 -
Good Morning all! Well, geek that I am, I was up checking on everybody at work most of the night. The cutover is still in progress but going excellent from (my) the hardware side. Development is having issues but it does look like I'll be able to enjoy my day off today!
Happy Birthday Marsha! Something tells me that whether you pick out a pretty hat, scarve or wig or go Commando, you'll always be the prettiest girl at the party. I hope your day is great!!
Sammie, did you have to work last nite? Hope you got to stay home and relax.
Enjoy your Sunday's all!0 -
Yep, I started Feb 15. Had my second AC last Thursday (3/1). Two more to go then on to surgery and Taxol...company is good Karen! How are you making out?
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Marsha,
Happy Birthday sweet woman! Screw the hair -- my new motto now that mine is almost gone. I'm just a week ahead of you in treatment. I get impatient, too, during my non-chemo week. Just want to go forward and get it over with but I guess the body needs the time to recooperate. So, I'm anxious for Tuesday to be here but nervous about the SEs increasing. It'll be over before we know it.
Linnie0 -
Well I have made a very important decision today. I was fooling around with the two wigs that I have and I decided screw it. It was taking me forever. Nor did they look like me. It would get one side fixed and the other side would look wrong. I have to get up at 5:30 am for work anyway and I refuse to get up any earlier.So I have now taken out the TLC catalog and am going to order some turbans and scarfbands. And if anyone does not like the way they look they can kiss my a--!
Now that I have vented I noticed I have a wound that is infected. I guess that means my counts are low since I am already on antibotics. I will call the onc. tomorrow and see what to do. I have my second A/C on thursday. I do have alot of energy right now so I am happy about that.
Happy birthday Marsha. I will have a cocktail for you on Thursday.
LuLu0 -
Hi ladies! Day 17 and hair is coming out in clumps! DId start to shed on day 14 right on scheduale. Wonder how many days to bald head if I don't shave it? Got my simulation rad set up for Wed. I hope I'm over this cough/ cold by then. I just went to the store this morning for groceries. I went friday but was in such a daze I couldn't handle it long at all. THis time I got everything on the list still needed and then some. Starting to get my appetite back. Am reading along to see how my chemo cruise sisters are doing yet. Happy birthday Marsha, hope it wasn't too bad of a day for ya!
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Sigh...I want to join the club. I'd rather not be here, but I am. Let's see...trying to catch up on all of your postings. Shaved my head last week before the hair started to fall out, pretty well on schedule at Day 13 following my first AC. Hating my wig and most of my hats but things could be worse. I'm coping pretty well with chemo, even though it sucks big time. Two more AC to go then I find out what's left of the single tumor in my left breast. I think it was Martha who said something about little itty bitty titties...a 5 cm tumor in a B cup, that's me. I'm pretty well resigned to the mastectomy even though the surgeon is trying to give me a lumpectomy option with the neo adjuvant treatment. I'm triple negative as well...saw a few of you out there..Hilary I think and others? That's pretty scary, heh? I try not to think about that one too much. Enough for now ...I'll get caught up and be back more regularly now that I've found a February Chemo Club.
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Name/User Name Loc Chemo Start
1 Karen swimmingmom Ohio 2/15
2 Hillary narberthmom Southeastern PA ACX4 (every 2wks), TX4 (every 2wks)
3 Marsha marshakb Florida DD Chemo 2/7
4 Melody maj01 Texas 2/5 port 2/9 Chemo 4xAC
5 Phyllis erinsgram Central PA 2/12 4xAC (2 weeks) 4 xP 2 Weeks
6 Cynthia cynthis1962 California 2/16 - surgery and port
7 Linnie was Linda #1 linnieva Virginia 2/6 Chemo 4xAC (2 weeks) 4xT
8 Pat wayover20 Texas Chemo 2/8 big birthday on 2/11 and need for hugs!
9 Catherine cahterineh Colorado Chemo 2/13
10 Leah leahrc Massachusetts BX on 1/29 Chemo on 2/1 Our first + thoughts for March Surgery
11 Linda lindasuzy Seattle 1/29 surgery Chemo late Feb
12 Kim nynurse NY Start 2/1 (first of the group)
13 Mary reggio113 South Jersey Port 2/5 Chemo 2/14 Happy Valentines!
14 Jen horsegal Ohio Chemo 2/6 - 4xAC (3 weeks)
15 laronson laronson Surgery the week of Feb 5th
16 LuLu (Linda #3) piper Port 2/12 - Chemo 2/22
17 SammieKay Port 2/5 Chemo 2/13 12 wks taxol - Then FAC
18 Terry talbrig13 Altoona, PA MUGA 2/7 Chemo 2/9
19 Sheryl49 Sheryl49 Chemo 2/7 4xAC (3 weeks)
20 Nancy Nancy053 Chemo 2/8 4xAC (2 wks) 3xT (2 wks)
21 Joey85 Boston, MA Chemo 2/9 4xAC (2 wks) - 12 Wks Taxol 12Yr Heceptin
22 Sharon Misspell Chemo 2/19 or 2/22
23 KimberlyC KimberlyC Ventura County Chemo 2/20 ACIV dose dense x4 - Taxol x4
24 Julie for Mom (jch) jch Chemo 2/6 AC
25 Tracy madoline Texas Chemo 2/8 ACx4
26 Scott and Theresa lightphoto
27 Carynn comandobarbie Arizona DD Chemo 2/22 AC + T
28 Lynn maclean
29 Steph TampaChick
30 FreeThought 2/13, Chemo 2/14
31 ronnee07 MN Start 2/27
32 Tonimad9
33 Sallyann
34 Tropicmom
35 Lorilat Eastern Ontario Chemo 2/23
36 Alyson Chemo 2/22
37 Playwriter Texas
38 WendyPetru Champaing IL. Chemo Start 2/28
39 Sybil 4Sybil 2/15
40 BelindaL Austraila Chemo Start 2/23
41 MelanieW
42 GI Jel hockeymomfl
43 TB Twink 2/150 -
A very happy birthday to you, Marsha, which is "Bon anniversaire" in French and "S dnem rozhdenia" in Russian (should give you a good coverage with the most sincere warmest wishes for this special day... you DO look at least 10 years yonger on this lovely pic of yours).
We seem to have had a bit rougher go at it this time, Thursday was my worst day, but since yesterday I am back to normal (not even tired), if it were not for the hair issue: I can't believe the time it takes to go away, and it is so annoying... I'll have to vacuum today very seriously, because between Toby and Zoe (our doggies) and me, it's a hairy mess in here...
I did have more Neulasta effects, too, but they're gone. I believe the avastin (which I get on top of AC, clinical study) is giving me more pain where the surgery scars are (I need to check this with the onc). Comes and goes, but sometimes I have the feeling that one of you "horse gals, wild or not" have caught me with a lasso around my chest and won't let it go...
I am making a conscious effort not to lose weight, too, but found it a bit challenging: hard to believe considering there was no food I ever said no too, in my life (when I was born, my parents had decided that "there was a little hole under my nose that would cost them a fortune"... always been an enthusiastic eater from day one...). I realize that I spend even more time in the kitchen trying to prepare nutritious soups to freeze (loaded with greens and with some beef or chicken), trying to snack (not a habit of mine) on high protein things... the only thing I could eat all day long is plain low fat yogurt. Raw almonds (unprocessed, unsalted) go well too (calcium and proteins). Drinking all day long is getting old, too... and yet, if we eat more protein, we need to drink extra for our kidneys' sake... Strange experience to have to focus on our body all day long... speaking of which, I'll take "it" for a walk now, the weather is gorgeous as usual... and Toby is staring at me, wondering whether I lost complete sense of time... it's 10 am, time to move...
Carynn, glad to know the tx works. I am not sure I remember why they did not do the surgery right away... I am sitting in the same room as a woman who is going through chemo before surgery, and her tumor has shrunk dramatically too... I can't believe the energy you have to function at night, like you do... good for you... I know very well the aches and pains of systems going on line (my DH did software development, C++, for years, for the pipeline industry and other tricky problems, and, boy, the stress that was... it was his own little company, too, no safety net...).
Well, dearest fellow cruisers, enjoy this Sunday as much as you can,
Big hugs to all,
CatherineH0 -
Hi TB & welcome. We know that no one wants to be here, but we are glad that you found us.
Our diagnosis are very similar. I'm stage II, IDC, grade 3, 4.5 cm tumor. I'm also triple negative and doing chemo before surgery. You may have seen my post last night that my 4.5 cm tumor is absolutely shrinking! While there are no guarentees, both my Onc and Surgeon have told me that after treatment when it's time for the lumpectomy, there often is no lump left. At that point they take tissue from the area to check for the micro cells. While I know that it's still completely possible that I'd need a masectomy, I have no reason to believe that I wont be one of the lucky ones who wont have a tumor when I'm done. Someone on this board once told me that I was lucky I got to do it this way because I have proof that treatment is working. I liked that!
As for the triple negative, I dont worry about that much. Please remember that all of the statistics, etc that you read are based on 5 year benchmarks, so they are 5 years old by the time we see them. So to me triple neg is just another lable for the diagnosis to help the Onc with treatment.
So, welcome to the cruise! You'll find lots of support as well as a good kick in the pants if needed.
Carynn0 -
Thanks for the warm welcome Carynn. I appreciate that and the encouraging words re triple neg. I know these things too but occasionally slip into my 'not so happy' place. I am also encouraged that you're going through pretty much the same process as I...and yes, knowing/seeing the effects of the chemo on my tumor is a good thing (although it's been pretty nominal just having gone through the 2nd AC). I'll catch up on your posts so I don't have to make you repeat yourself...Now, if I cuold just get this pic of me to look even close to normal I'd be happier...back to the drawing board on that one.
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Welcome "Twink"... for your picture, you need to go to the editor you use and "resize" to the spec (no more than 80 pixels by 80), save, that should do it...
Take care,
CatherineH0 -
I'm experimenting with the whole pix If this comes through, that is me in the middle with my short shag cut. Marsha
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Marsha, how do you insert a picture in this frame? What is the starting screen for that? A fine group of women, here...
Catherine0 -
Catherine, google "free photobucket" it explains it in simple to use English. LOL Create an account and you upload from where ever you store your pixs. Click on image when posting and paste that image from your photobucket account. What fun, can't wait to see photos from everyone! Mine are still too big, got to figure that out! Marsha
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Good morning fellow travellers on this cruise.
My hair is just sitting there looking dead. Do wish it would come out.
Does anyone get phantom breast pain because I do? It can be excruciating, right down to the non-existant nipple.
I have managed to get to school and have taught one class sofar this morning. This is despite having a rough night with nausea.
Best wishes for those having treatment today(Monday)
Alyson0 -
Dear Hillary and other cruisers,
Treatment #3 had a few hiccups along the way, but all seems well today. First, I am on some rotgut antibiotic (Doxyrubicin) due to a staph infection which manifested itself as pustules on a bald head and a balding crotch. Talk about adding insult to injury..
Well the antibiotic bottle says "don't even think about taking this without food". So of course I took it while i was not really eating full meals after chemo... so I threw up, which I think also got rid of the Zofran I had taken with the antibiotic, etc. and ended up getting pretty nauseous for a few hours. Then of course I was afraid to eat, which got me in a bad loop for most of Saturday. I ate strawberries and angel food cake after trying lots of other "healthier" alternatives which did not stay down. But this did, and I was able to break the cycle. Whew.. an adventure.
I am a little tired of procrit shots every week, and Neulasta shots cuz I HATE SHOTS. At one point during the chemo, I started crying like a little baby cuz I had to get a shot. I was also exhausted due to working 40 hours in 3 days for the "go-live" of the computer project I am on, and I think I was just tired and aggravated. But my onco nurse got all concerned about the fact that I was crying, and that I should go on anti-depressants and "see somebody". God, I am the most positive person I know! I was upset that she couldn't just allow me to feel sorry for myself for 15 minutes. Sheesh. I have a frigging bald scalp full of pustules, I have been stuck with needles, my port never works for blood draws, etc. etc. SO CAN I JUST CRY IN FRUSTRATION for 15 minutes without everybody going off the deep end?
I have gone for help many times in my life- divorce, teen daughter driving me nuts, midlife angst, etc.- so if I needed help, I would certainly welcome it. But I kind of resent that I have to be "happy" and "compliant" to make them comfortable. Guess I learned a lesson, but not happy about it. Wish I was more like Marsha!
Anyway, one more D%&*#@ treatment on MAr. 15. Can't wait.
By the way, I will not be having surgery in March. The current plan is to wait one month after the final treatment, have all the scans/MRI over again in mid-April, and then myself and the onco guy will decide what the next step is. So that is end of April at the earliest for the next step. As I said before, this is my "new normal" as a Stage IV person.
Love to you all. Thanks for listening.0 -
Leah,
Go ahead...you can cry in frustration, you're allowed. Then, pick yourself up, dust yourself off, dry your eyes, blow your nose...and get back at it. You sound strong!
Twink0 -
Dear, dear Leah, we all love you so much here, I feel for what you are going through. You're right, indeed, even the ones labelled in a pre-BC life "always so positive, upbeat, so funny, etc" need to let it go every once in a while... even if people around us feel "uncomfortable"... Our bodies have to go through a lot of poisoning before things get more "stable" again... with all the bobos and miseries that go with it... I had my "15 minutes" too, last night, I think because of the shabby look I have while my hair is not all gone (very short, but persistent...)... I felt "relieved" that I could cry some, the first time since dx on Dec. 18... as Twink says, then we start back where we left it... and life goes on. Come talk to us here more, do not keep all this for yourself. I wish you to recover soon from the "eruption" and be more comfortable. Big, big hugs to you,
CatherineH0 -
Leah,
Have a good cry - have a temper trantrum but don't let anyone say that it is wrong to feel like that and suggest you need help. It really helps coping with what our bodies are going through.
I will think of you when I start my second treatment on the 15th.
Alyson0 -
Leah, When I fired my 1st oncologist for lack of good health care, I threw an absolute fit in his office with my onco nurse. I screamed at her and cried and told her this was my F***ing life, not hers we are talking about. I am so sorry for what you are going through with your BC but the thought that you are not allowed to have a MUCH DESERVED MELTDOWN is absolutely ridiculous! And girl, being more like me would not have changed ANYBODY'S feelings for what that dumbass said to you. She is the one who needs counceling if that is her idea of health care! I didn't really go into the whole firing my onc story because it was SO negative. Catherine asked me about it in a PM and I vented a very long message to her about it. Please do not feel like we are all sailing away on our chemo cruise without any waves! Funny, but to me YOU are the inspiration. You have led us on this shitty voyage the whole way and we love you for it. I'm having trouble with the food thing also, found if I let my stomach go without putting something in it every 2 hours or so, start getting seasick feeling. Hang in there girlfriend, we are all here anytime you need us as we know you are if we need you. Hugs ((((((LEAH)))))))) Marsha
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Leah, I hear you and am sorry. Big hugs to you {{{{{{Leah}}}}}}. My sister is married to a psych and the first thing she said to me was I need to find a therapist to talk to-I thought considering everything I was doing pretty good. You have had a rough go all around. Catherine is right, come around here more often so we can talk with you.
Just an FYI, for others my onc gave me suppositories to keep just in case I could not keep the phenergan down. I keep them in the fridge and if I am in a situation like Leah I have them. Not that a suppository sounds great but...
I think I have downgraded my port to pink, not read as hell anymore. I still have doubts if I will get chemo on Wed. My sinuses are still full.
Marsha, you look cute!! Happy, happy birthday!!!!!!!!!!!
Welcome Twink.
Has anyone else who shaved their head or whose hair is falling out had their scalp hurt? My scalp is killing me and it is even hard to wear a turban. I wore the wig all weekend to yet another swim meet-this one in the area. I hated it. It hurt, itched and was hot. I paid a fortune for the darn thing and now I dread wearing it. Not sure how scarves and hats would go at work.
My son is swimming in US sectionals on the 3/15 for four days and I have decided not to go. Breaks my heart but after how sick I got traveling at the state meet I think it would be unwise. It is hard to miss things for your kids. Stupid bc!
karen0 -
Happy Birthday Marsha. What a beautiful picture. You do look young and beautiful.
Great news Carynn, no calls from the hospital this weekend, so I haven't had to work. Yahoo!
I have tried to post twice and keep making my post disappear. This has been a rough day. Mostly depressed about my appearance. I plan to attend one of the LGFB workshops soon. Maybe that will help. I just don't look good without hair and don't like wearing wigs. I am just not feeling very attractive. I am sure I will get my mojo back soon. LOL
Hope everyone had a good weekend. I did make myself get outside and walk two miles and planted two pots of flowers for my front porch.
Hugs and good thoughts for everyone. Sammie Kay0 -
Yes Karen, my head is hurting and when I rub it the little stubble I have left is coming out. I hate wearing a wig too. Oh well, I guess we will all find our comfort zone one of these days soon. I think it just hit me today that I will be this way for at least a year. Wow. Remember "One Day At A Time". I must remind myself often.
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Hi, All, I haven't posted for awhile -- I tried two nights in a row but got a "this page has expired." Haven't a clue why.
I am so glad to hear about those who are doing well, and so sad for those who are not. It's just so hard to predict what life will hand any one of us next.
I started losing my hair--somewhat slowly--Day 13 after Chemo #1. By Day 15 (yesterday) I told a couple of friends I had enough hair in my waste basket to cover a cat or a small dog if they knew of any bald ones. But last night Day 16 it really accelerated when I combed it after I washed it and I was grabbing long strands of hair by the handfuls. I was throwing it in the wastebasket when I got an idea and filled one of the bathroom sinks with it. When my husband came up to go to bed, I told him to go look at the "wild animal" in the sink. We laughed until I cried.
The big problem is that I have not told my mother about my cancer. She had a stroke Thanksgiving Day 2004 and has some dementia; her doctor agrees with me that it would serve no good purpose, and that it would just make her feel more helpless. I don't know how to hide it from her if I go completely bald. Today when more and more hair fell out and it became more obvious, I tied a bandana around my head and when she asked about it, I told her I was doing some housecleaning. She seemed to accept that. I am trying to get one of my brothers or one of my cousins to take her for the duration of my treatment. So far no firm commitment.
Has anyone heard of Nioxin? I was told it is an ingredient in a shampoo and conditioner that you have to get in a beauty salon and that it is good for those going through hair loss from chemo.
Goodnight, Sweet Dreams to all, Sybil0 -
Okay, now that apparently I can post again, I want to say some thank yous --
Hilary, Phyl and Scott -- Thank you for your input re: Neulasta (me giving me my own injections). My insurance co. did send authorization so I will DIY the day after Chemo #2 on Monday, March 12th.
Phyl -- Thanks for the "2 boxes"; your great description allowed me to totally visualize it and I will use it.
Marsha -- I am trying to laugh more these days, thanks for your help with it. I wish I was as outgoing and uninhibited as you seem to be.
Good night again, Sybil0 -
HAPPY BIRTHDAY MARSHA! Hope you celebrated in fine style. Sending you a virtual chocolate cake with decadent fudge swirls, almonds (protein) and ice cream with loads of calories.
Karen---I too started losing hair on day 14, and it pretty much all came out in 24 hours days 16-17 (finally had to stop crying and just go get it shaved). My scalp hurt very badly before, during and after...but I massaged a bunch of Eucerin on it last night and wore a cap to bed, and it made a huge difference! I don't know, maybe a combination of the moisturizing and held-in heat? Anyway, still tender, but the soreness is gone...I'm doing it again tonight. Feels so much better that I think I'll try and get back to the hairdresser before my cocktail on Thursday and have her shave it all the way to shiny (it was so tender she had to use the 1/4 inch guard on the clippers). I can deal with shedding from my 3 dogs, but having a much harder time with my own....
Sweet and restful dreams, everyone!0 -
Although I joined late in the month, I take so much comfort in reading about all of your journeys, knowing what to expect and seeing how brave and strong all of you are. It gives me hope that I can be the same.
Happy Birthday to Marsha! Your sense of humor is awesome!
Karen - how did your son do at sectionals? My daughter swam last weekend at YMCA districts and will swim at YMCA state this weekend (the state meet for Illinois is in Missouri - go figure). I hope he did well!
Wendy0 -
Hey cruisers! Happy MOnday... I have a question, someone, here, I think, mentioned in a post that she has had pain in her lower side since surgery. I can't find that post. But I have had a pain in my side low down by the lowest rib since my first surgery (lumpectomy). It feels like a badly pulled muscle and it is inhibiting movement almost more than my node biopsy armpit which is almost better. I mentioned it to my NP and she just shrugged it off. Has anyone else had this pain? It's not the chemo pain since I had it way before the chemo. Thanks for your help
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