Starting chemo July 2014
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Kitkat; You posted while I was writing my post. (It takes me awhile.) Don't give the 3N too much power. I understand the fear of it - yes it has an elevated tendency to return. (Just ask me about that.) But, I'm not the only returnee. It happens to others also. Not one of us will walk away and never look over our shoulder again. We mist stay on top of it forever.
I'm thinking that you are not quite at full fighting form yet. Take a deep breathe and be extra extra nice to yourself for a couple days. Then just be extra nice to you every day. We are in it together and if you can't do it...either can we.
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Jennliza - Now that's my kind of pet , one that cleans up after himself! He's adorable What breed is he?
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I wanted to share a photo of SlappySquirrel's brown rolled brim hat. I'm looking a little sickly but the hat is really cute!
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Coyote, When I asked my MO about screenings, etc after chemo and rads, he told me that I would be screened based on symptoms. If I developed headaches, they would check for brain involvement, bone pain, bone involvement, cough...etc. Since I have no cancer now, how necessary is all of this misery I'm going through now?
I have a million questions for the MO. Waiting for my appointment to discuss his thoughts and my concerns.
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Hello all,
Love seeing all the furries.....wish we could have some but our landlord doesn't allow them. (I'd love a ball of fur right now that I could blame all the shedding on).
Quick question: I'm shedding all over....wondering if I should have my hair shaved off? Or is it better to keep what might be left? (will there be ANYTHING left?) Right now, I have some fringe and some in the back so when I wore a baseball cap today it didn't look half bad. I'm in serious denial about the hair thing - and Squirrel's purple hat is too small (I didn't realize I had a big head) - anyone want me to send the purple one to them? (it was posted 1.5 weeks ago).
Oh - and my lovely husband invited out of town guests to dinner tonight. Can't say that I'm impressed since I'm shedding like a dog and not feeling particularly social. Luckily, we hired a cook to help us through this so she's going to cook tonight - but still.....(insert sounds of me whining). I always get a bit crazy when we have people over trying to make sure that everything looks perfect. SE's are much better (although my poop is still orange - what's that all about? No parasites, though - at least chemo was good for killing the buggers!) Feeling good enough to go to Round 2 (but not going to...)
Irish Mom/Deb
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Kitkat: Very necessary in some opinions - my humble opinion being one. I also asked my new MO that question about post treatment screening because she and her partners are of the opinion that markers are not effective for breast cancer. She said that we will monitor with symptoms and regular scans (if I am willing - because some people are not). I'm pretty tough and ignore things like headaches and pain. I think I am more comfortable with regular scans.My understanding is that the cancer that chemo is going after are pretty tiny - just scattered cells. They are not the ones that would show up on a PET scan. Coming out of cancer removal surgery, most of us feel that we are cancer free. Our goal is to stay that way! Chemo, with it's nasty side effects, is one of the tools used in western medicine. There are certainly those that disagree with it and feel that it does more harm than good. It can be a difficult decision - chemo or no chemo. As a matter of fact, I stopped the chemo treatments early last time because the se's were so extreme. I literally thought I was going to die. I admit that I question that decision now.
I hope your mind comes to a peaceful decision about what you will do. What ever it is, it is not easy.
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Mommymel - did your MO keep you on the same chemo? I would imagine with only being stage 1 HER2+ ...you wouldn't need Adriamycin. THat is strong stuff and hard on your heart (irreversible). Herceptin is also hard on your heart (but reversible)....I would discuss that with you MO.... A very common Chemo protocol for HER2+ BC is Taxotere, Carboplatin and Herceptin....but your Taxol is similar to Taxotere. I hear Taxok is easier on you (less s/e's)....but its administered weekly, while taxotere is every 3 weeks. Sorry you had a recurrence....and yes 24 and 36...definitely too young!!!
The taxotere rash - I think i have one....but it only started a couple of days ago....9 days post treatment. Its on my forehead...and a lil on my cheeks. It look like the measles....blotchy red dots. It doesnt itch... Wondering if I should call my doctor....just been hiding it with makeup.
Hair loss question - before your hair started to fall out....was there any warning....like a painful scalp or itchy scalp?I am doing cold caps.....but who know if we did it right....or if it will work for me. My 2 wk mark is this Thurs. Its seems that most people started losing hair then. Just wondering if there was any warning....or on day 14 hair just starts coming out?
Of course I am going to Toronto this weekend to meet my fiance's family....right when my shedding/hair loss is going to start....ugh! Picking up my wig today....just in case.
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Blownaway,
You look beautiful!!
Shirley
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Ladies,
I have several hats I finished up this weekend. I'm waiting for addresses for some, check your mailbox.
I am scheduled to have my hysterectomy Monday, August 4th, at 4PM. (Boy will I be hungry by then!!)
I hope to get most of these hats finished and mailed before then. Otherwise I should be able to crochet 4 or 5 days after surgery, unless the pain meds have me too loopy. I'm trying to do these in the order they came in, but organization isn't my strong point.
Shirley
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Hi ladies, I hope you'll pardon my sporadic postings as I have been having a few "I don't even want to think about cancer today" times. Had them last chemo too. As a result, I neglected to add filberta to our list last night, for which I apologize and have rectified and also frenchiegal, whose date I do not have.
I'm having to take my sublingual tab for abdominal pain promptly every 4 hours or it hits like a ton of bricks, as it did about 4:30am. Also 8:30 and 12:30. But as long as I take it promptly it's staying under control.
Mumford, your post brought a couple things to mind. I was actually going to mention yesterday, keeping the intestinal flora balanced is vital. I'm taking probiotics and acidophilus as well as eating yogurt once or twice a day, also kefir. I haven't experienced thrush with chemo, but I did have it after surgery because of antibiotics. Salt water rinse will work but take a bit longer than what I used, which was food grade hydrogen peroxide, a spoonful in water and used as a rinse. The cause of thrush is simply imbalance in the bacteria of the mouth, so the better you do at the probiotic/acidophilus/yogurt regime, the faster it will go away.
And about puppy Mumford, I hear ya. Our big dog is a rescue and profoundly terrified of thunder, so we got him a Thundershirt and that makes a huge difference. It took a while for him to get used to, but now he wants it when there's a storm. It serves as a kind of swaddling, which makes them feel safe. It's unpleasant when a 90 lb dog crawls up in bed and lays on your head, to be honest.
Kitkatmo, so glad you've been sprung! Rejoin the living! Oh, and Nucky is just precious!
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Blownaway - you do look beautiful!!!
As for Pepper (aka Pooper), she is a Shorkie...a Shitzu/Yorkie mix. She is truly the sweetest 5 1/2 lbs ever created!!!
Both her and my fiance have black hair and came into my life last year!!! My 2 black-haired loves....feel very blessed!!!!!
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MomtoIrishQ, my Shirley cap was also a bit small but I was able to stretch it to fit. If you love it, you might try wetting it and see if that will stretch it.
Don't you hate when you do a long post, only to find that you've missed the page turn and here are half a dozen posts you've missed?
My hair started falling out badly on about day 16 or 17, btw.
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kitkat , I was diagnosed a TN also but when my second opinion send it out for a new pathology test came back positive for her2 so I would recommend a second one just to make sure. BTW being a triple negative could be more difficult in terms of treatment and statistics , but don't forget that you are not a number and each case is different . Statistics mean an overall but there are lots of cases that yang woman with triple negative did much better than other cases. Don't worry about the nomenclature just get your guns to fight as best as you can these little invader
I did pet scan and MRI of my beast . My second opinion said that I should get a CT too just to make sure . My MO told me that is not necessary that they do it when the cancer have reached the liphonodes or stage 4 . But I don't care I'm gonna do it just to be safe:)
Jennliza I'm stage 2a and my treatment now is carboplatin , dulcetaxol and now the herceptine . Every 3weeks
I think you were talking about my first time around . I did have ACT but was 11 years ago. About the hair I know when is coming off because I pay attention to the other hairy parts kkkkk . If they are coming off and you are getting a Brazilian and your hair still standing kkkk then you know that the caps are working
there is no warning one day you wake up and your pillow is pact of hair than is time to shave Shirley you are the kindest , good luck on your surgery will be fine I'll pray for your rapid recovery !
Blownaway good to see you you look just so elegant and pretty !
Joys mommy he is so cute they are really what keep me going every day.
Coyote NV , I was a TN and did all the chemo that I should but I'm here again. So don't bet yourself up because of your pass decisions because you did what you thought it was the best for you at that point in your life. You are such a strong woman and a beautiful person don't let that hunt you ok? Hope you are doing fine.
Mags hope you are doing better with your cramps. Hopefully you and SH will have a wonderful anniversary .
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Haha ok, next problem over here: thrush. I'm picking up prescription a for it today, but does anyone have tips from personal experience? My mouth hurt so bad that I didn't sleep hardly at all at home last night, after two nights in the hospital where I didn't sleep AT ALL, so now I'm so tired and just beat up feeling that I can barely do anything.
I did eat a container of plain yogurt a little while ago, and that seems to have helped some. I need to be chugging that stuff anyway since I'm sure that 5 bags of antibiotics and a cipro script have pretty much decimated all of my natural flora, not to mention caused the thrush.
I'm feeling pretty frustrated today, but I'm sure that's just the exhaustion talking.
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So glad you get to go home, nothing like sleeping in your own bed and nobody waking you up to take your blood pressure
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So glad you get to go home, nothing like sleeping in your own bed and nobody waking you up to take your blood pressure
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So glad you get to go home, nothing like sleeping in your own bed and nobody waking you up to take your blood pressure
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Emend is another excellent anti nausea med, check if your Dr thinks that would help.
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Emend is another excellent anti nausea med, check if your Dr thinks that would help.
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frenchie, yes, steroids definitely have insomnia as a side effect.
ladies, I'm having trouble on the site today, even though I hit submit, when I go to post another reply, my previous message is still there, and I'm posting duplicate messages and then having to delete them. What am I doing wrong?
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JenKay, re: thrush, see my long post a few posts above yours for my experiences.
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Mumford: if you suspect thrush, yes take your prescribed rinse and get on top of it, I'm thinking more Jan/Feb for my vacation, get away from our ND winter and hopefully have more energy by then
MomtoIrish: what in the world is your husband thinking? You're supposed to be staying away from people and their germs, so he invites them into your home for the evening when your hair is falling out? I'd lock myself in the bedroom with a good book, let him clean your hair off the dining room table, and he can just entertain them for the evening and then go around with the lysol wipes and wipe up anything they touched.
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Jenliza,
Before my hair started to fall out, the roots hurt a little bit when touched. It started to fall out on Thursday a little bit, just single strands (Day 15) and then on Day 16 to now (Day 19) it's been coming out on my pillow and whenever I even slightly pull it in clumps. I have bald spots all over....not a pretty sight. I'm wondering if I should shave it - or keep fringe if that stays (would save buying one of those fringes for baseball hats). Someone on the hair thread said that they use one of those sticky hair pick up thingies on their hair a few times a day to keep it from getting all over (mine gets in my food and on my computer). Since we are having people over tonight my daughter lent me one of her scarves. I think I understand why people shave it because I have to say the hair coming out has been depressing and a bit shocking.
Mumford - I want a white fluffy dog - what breed is yours? I'm mainly a cat person (we have owned several Birman's - a cat breed that are like dogs) so maybe that's why I like Birman's (they look like long haired Siamese with white paws (in the Homeward Bound movie and in commericals).
Irish Deb
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Puffin, you crack me up! Good advice to MomtoIrish's DH. A woman with a Lysol wipe after my own heart...let's meet somewhere warm in Jan. (It gets cold up here, too...).
MomtoIrish, Mumford is a Coton de Tulear. Check out a google search. I think it's the perfect breed -- non-shedding, small enough to grab in an emergency, big enough that he's hardy and likes a good romp, very interactive and vocal. Cute as a button!
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Puffin - you crack me up! I'm in the bedroom right now - I'm a bit anal about having a clean house when guests come over so I hope he's out there cleaning! (we have four teens so that's impossible). Of course, my MO never talked about staying away from people - didn't get or offered the Nue? shot. And they aren't checking my WBC/RBC. I think they are pretty useless - part of the reason I'm bailing on chemo. I was given no information - I think the chemo school is a good idea (I've seen that some cancer centers have that). Sometimes preparation is half the battle.
Looked up the Coton - looks like a great dog. I was thinking a small to medium Golden Doodle - but I think they can be overly energetic. Can't wait until we can have animals - ....maybe next year.
Irish Deb
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Hi ladies, just popping in to catch up with everyone's post. I love reading them. I went for my first treatment today. Everything went pretty good. I kinda freaked out a little when I saw the port connector thing, it looked kind of like an extra long thumb tack to me, lol. But it really didn't hurt much going in. I was there for nearly three hours, but they said next time would be quicker. 1 down, 3 to go. Now it's just a wait and see on how it goes for the next few days for side effects.
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Tadover - Did you use Emla cream to deaden the area 1 hour before your infusion? I did and never felt the needle go in - I wasn't brave enough to look though.
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I know we're almost at the end of the month, but I was wondering if I could join you folks here. I started Carboplatin & Taxol on July 23rd, on a 3-week cycle.
I've been doing fine from the chemo but the neupogen has been kicking my butt. I spent most of the weekend hopped up on Vicodin to deal with the intense spasms throughout my legs and hips. Better today, but still feeling a bit weak and tired from it all.
I've browsed the recent messages but I'm looking forward to reading the thread and getting to know you all.
Kelleigh
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Momtoirishq - I didn't think I was being kept in the know re my lab work and path reports, etc, then discoved that they were all posted online and it was up to me to figure out how to download them. Ive been able to read them but still can't see an option to print them out. You are opting out of chemo? My onco told me that if I refused chemo, I could not be treated there.
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After reading on the TCH discussion board, I asked my onco to add Emend. My first infusion I was flat on my back in bed with nausea for 2-3 days. This time, wih Emend added, absolutely no nausea. Huge improvement!
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