March 2012 chemo

Sissydi

Kadia, hope you are doing well too!

Lumpynme

diamonslayer- i was recently put back on antidepressant while i am in chemo--so np there but your MO will need to know what you take to coordinate your tx.

also- i had a PICC line put in--i just could NOT get self to do the port tho many swear by them...i have no problems with my PICC... i used to donate blood plasma 2X a week for about a year and had np with my veins- still really in good shape however some of teh chemo drugs-particularly adriamyacin-are really hard on even good veins....just a thought---

hope this helps some

margo

Hills

Kltb04,

My girls are 5 and 9 (going on 13). My older daughter is super informed about all that is happening because we are following her lead and she is curious. She's not happy about my impending baldness and has begged me to wear my wig around her and her friends. I'm sure we will get more comfortable as things progress. My 5 year old we still need to tell about my hair loss. Waiting till its more imminent. Hate this part.

Hills

Masserz

Kltb04 - I've gotten conflicting instructions on bathing everytime I've had a surgery. And their verbal instructions almost never match the written ones either! It's a pain, but I just decided not to stress about it. I was told I could take the outer dressing off the port 24 hours after the surgery, but to leave the surgical tapes over the incisions alone until they fell off or three weeks had passed. They are small and not obtrusive, so it was no big deal to leave them alone. I was allowed to shower, but was told not to let the water flow directly onto the surgery site and not to scrub or rub the area while washing. If you aren't comfortbale with that, take a sponge bath in waist deep water. As for hair washing, when I wasn't comfortable washing my own, I took a little trip down to the local Supercuts or popped into my hair dressers and got my hair washed and dried. It was nice to be pampered a little and I wasn't able to do much with my hair in my own so it was nice to look good too!



Love74- wow. That is a LOT of money! Good for you for planning ahead though. I'm sure it's nice to know you aren't wiping out that option!



Galena- you rock. Good for you. I too want to play with my hair styles as I get it cut so I can sort of see what I might want to do while it's on it's way back out. My wig is close to my current style, but a little longer. I was in the process of growing my hair out from a bad color job that killed my hair and it isn't quite back to my preferred length so I decided to just buy the remaining length! : ). Might get another shorter fun one too for the heck of it. I also plan to wear scarfs and hats...it's too warm in San Diego to always wear a wig and I'm actually pretty casual about my appearance. I don't think I'm going to fool anyone I see on a regular basis, so I'll just go with it.



Diamonslayer-don't hesitate to ask your docs for anything you need during this process. They want you to stay on treatment so they should support you in any way you need. People who aren't already on antidepressants go on them during treatment, so no worries there. I just got a prescription for ativan to help me sleep, but he also said it should help if I start to feel down about what's happening. Definitely advocate for yourself because stress and panic is especially not your friend right now. And we're here for you too...vent, whine or complain as much as you need to feel better! We'll all have our moments.



Today is my Day 3 and I'm not feeling so great. I'm starting to feel a little sick to my stomach and getting some of the flu-like symptoms and am super bummed. I was really hoping to get away without that. To me it's the worst possible thing to happen, my stomach is so sensitive. My lower back is also aching despite the claritan and tylenol, but that at least is tolerable. Hoping this is as bad as it gets...Going to get off my butt and go for a walk soon so I hope that helps shake me out if it.

kltb04

Sissydi - thanks for the bandage info. I am not a shower person, just usually do that to wash my hair and then take a bath but I would feel better knowing it is covered up.



Masserz - that is probably what I will do. Just a shallow bath and my mom was going to go ahead and cut a few inches off my hair so it will be easier to deal with the next few weeks so we can probably just do it over the sink. Also good for you for getting up and going for a walk. I hope I can find the motivation to do that once I start my chemo. I think my mom will make me, lol. DH just tends to let me sit and whine and not press me to do anything but she will be encouraging me to get up and about when it is feasible.



Hills - . That us tough. My 11 year old is concerned more than the 8 year old because she knows what cancer is but I have told her that as things progress if her friends are over or whatnot that I will likely just be wearing caps or bandanas around the house and I think they will be cool with that. She really only has 2 BFFs and they are both pretty mature. I know it must be hard with a 5 year old because that is just too young to understand. With my younger one that is when I actually said cancer. She saw the wig and said "why is your hair going to fall out". Amd I told her the medicine kills the good cells along with the bad/ cancer cells. She was surprised for a minute but pretty much took it in stride. I just feel guilty because I am just so worried about myself right now that I am not being very involved with them. Luckily my husband and parents are able to pick up the slack but still.

KCB

Morning Marchers!

Yes the Hair Question: I know it does feel odd to place so much importance on the hair loss, but I've come to feel that it's because it is such a public symbol of our cancer, and something that is totally out of our control. There's no med for preventin the hairless, like there are for other side effects...and the long-shor-long debate... Well, I just had my long curly hair cut off yesterday, into a stylish (I think?) short do... Figured it was a good time to try a new look, and it would only last a couple weeks if I hate it...haven't totally figured out the wig thing yet, but I think even if I do end up going wihalingerwig, closer to my old hair, anyone who I see on a regular basis these days knows what I'm going through and should be able to deal with my ever-changing look.

Mh kids were very sad yesterday morning before my haircut which made me Super sad, but it was all ok in the end: everyone liked the cut, and i realized his is nothing compared to what's coming!!

Strange journey....

KCB

Also, today's pre-chemo plan is a major cleaning of the house!!

Alicea

Hi ladies you have all been so busy had took awhile catching up. Glad to know everyone is doing well with minimal SEs.



Last night I woke up soaked in sweat my pillow and bed were really soaked, has anyone else experience this. Also my period was due a few days ago, but never came, now I have been having my period since age 13 and never missed a beat, never, could this be "chemopause" that I have been hearing about. I will speak with my onc on Wednesday, but just wanted to know if anyone else experiencing these



Have a wonderful weekend all !!!!

kltb04

Katy I think you hit the nail on the head. It's a total loss of control and as if you are wearing a "scarlet letter" if you will. Glad you like your new cut though.



Alecia my oncologist told me that would happen ( the periods stopping). I haven't experienced it yet though since I don't start treatment til Monday.

Msbelle

Just had my head shaved. Feels so much better but hate this wig! Can't wait to get home and take it off. I bought several caps and scarves and they feel so good! Not brave enough to go in public yet. Making my BFF get our lunch to go. Wish I didn't feel like everyone would be looking at me. It's crazy how the DMX doesn't bother me but the hair loss does!

Sissydi

MsBelle, I know! I went for a walk in my wig yesterday, with a ballcap over it. I thought for sure everyone was looking at me....we are extra sensitive right now! Haven't been to a store yet in it; and definitely not church! I hate being so sensitive about stuff like that; who cares! I do, for some dumb reason! My neighbor came over, and I was wearing it, and she says, "oh my gosh, what a cute wig!".....here she was being nice, and what else would she say? Yet, I was like, hey, your not supposed to notice!

galena_79

Day 14: Morning, everyone!

Thanks for your comments. My hairdresser was willing to go as far as buzzing my whole head with a number 2 clipper. But when we saw the above look, we decided it was time to stop.

I cut my hair so that I could take some control of my hair loss, and make it something fun and enjoyable. Long locks falling out would have really upset me. But cutting it short felt empowering.

I'm reconsidering now, whether I want to bother getting a wig. It's arrived in the store but I am feeling sassy with my short 'do, and loving my scarves. So I think I might just rock the bald look when it happens.  But I don't have to decide now.

zillamom- I'm sorry to hear that you're going thru this again. I wonder if the treatments have changed much in that time?

khintul- Thanks for that link, it's awesome!

onvacation- I intended to keep my normal diet throughout chemo - high fibre, low GI carbs, low fat, with lots of vegetables and protein.
And then chemo started. Flavours changed a lot. I lost my appetite, had indigestion, constipation and then diarrhoea. And people dropped off food for me - mostly lasagne and spagbol with white pasta.
So my meal plans flew out the window. I barely ate at all in the first week. In the second week I ate what tasted okay. Also, I had cravings. Figured my body needed something from those foods so I went with it.
I will probably eat my normal diet for the third week.

diamondslayer- I was told I could try my veins if I wanted, then get a port later if necessary. But I wanted the port. So I got mine a few days before I started chemo, but then it was too swollen to use so my first treatment went in my arm anyway, haha. For me the procedure was done under general anaesthetic, but most of the Marchers have said they got it under 'twilight' sedation (I presume similar to when you get wisdom teeth removed).

sissydi- Love this line! "This is your rant, rave, TMI, whine, complain, rage, and happy dances place!"

Masserz- Those early days are not fun at all. Starting to feel dread about starting my next round (but it's still a week away). Hope you're feeling better now.

munnybunni

had a lumpectomy 1/13 then 1/20 more margins removed.  Did mammosite HDR..ended that 1/27.

went to chemo dr...she wants to start chemo after i have my colonoscopy march 12th.....go to Endocrine Dr. March 14th as my diabetes med Avandia was taken off market so my PCP isnt sure what I should go on next.

Thursday March 15th I go to chemo dr...

when i was at chemo dr last she said AC 4 times...3 weeks apart...then tamoxifen for 5 years

as i have written on other boards...am anxious...nervous...scared.. ....am 67 yrs old...lost my sister to BC in 2004...she waited wayyyyyy to late to even go to Dr. and then waited wayyyyyy to long for her chemo ...almost 8 months after her mastectomy....so she could get insurance.

went to chemo classes that our hospital has you go to....lots of info...lots to think about...my hubbie has been real supportive and i appreciate that so much...as he is all i have...we have no kids

two gals i went to high school with ...we all meet once a month...brought by almost everything on the chemo list that was posted on breastcancer.org....i was so thrilled  they thought of me to check all that out and buy it for me

thanks for letting me rattle on...

what does it mean when it says BUMP on this site....????

onvacation

I think BUMP just brings it to an active topic, in case no one has posted for a while?  At least that is my understanding!

 This group is wonderful!  Such support, love it.  

Kim 

Leveled

Hi girls, may I join in to, first treatment march 15' so scared........

onvacation

Hi Leveled - I am scared too but we will get through this together!

FightingforA

I'm super scared too. The whole not knowing what to expect is just making me sick to my stomach. Just when I forget about it for a few minutes, the thought comes back in my head like a freight train...."I'm starting chemo on Tuesday". Crap.

munnybunni

seems as though there are many of us not knowing what to expect.  seems to be the norm for starting chemo ...the unknown

i know that my MO said i would be getting 4 treatments...3 weeks apart of A/C...then 5 yrs of tamoxifen.  They are going to use IV...if it doesnt work out well...then a port for the remainder.

onvacation

I have to do 6 rounds so I am getting a port in, so hopefully that will be no biggie and make the infusions easier.

Yes, lots of unknowns!  I have read about all the potential side effects etc, and praying that I won't get them.  If I do, I will deal with it.  Not much else you can do!

hang in there! 

Linda4559

Hi Everyone.......Had a BMX on 2/13 and am starting 4 cycles of A/C on 3/22 followed by 4 cycles of Taxotere and maybe radiation after that.   All your posts are inspiring.....hoping and praying we all get thru this without too many problems.....God Bless You all....

Lumpynme

not sure if it will help at all...the not knowing and the waiting and the wondering leading up to the first treatment  were, in my mind, worse than the treatment itself. i have been relatively lucky in re side effects (SEs) so i may not be one to talk here...

can you identify what it is that scares you specifically? or are you still just overwhelmed?

i'm two treatments of DD AC ahead of most of you- if i can help in any way-ask-talk to me!

cancer feeds on stress and fear.....let's work together to get rid of them AND the cancer!

Alicea

Onvacation, Leveled, Nsmolen, Munnybunni - I did my first treatment on 2/29 and I was scared too, now looking back I would say it is very doable, it wasn't half as bad as I thought it was going to be, you ladies will be just fine. Sending comforting hugs your way

kltb04

Welcome to those just joining. I agree that the waiting is the worst. I think once we all get started it will get easier as far as knowing what to expect. Almost like the first day of school, no?



Right now I am so uncomfortable from my SNB and port insertion (those getting ports don't worry a lot of people say they get through it without a hitch) and having such anxiety worrying about my PET results that I am not even thinking about the actual treatment Monday.

FightingforA

Lumpynme- there are a few things I'm scared of, but I think the biggest one on my mind is being worried that I won't be able to care for my 6 month old. My husband works odd shifts, so I'm usually the one with her in the evenings. I worry that I'll feel too sick or feel too tired to spend the time with her and the interaction with her that she deserves. And although superficial, I worry about the hair loss. My whole life, I've been identified by my hair. I guess I feel like I'll lose myself or something. Plus, I work with a population that isn't very sensitive to others' feelings, and I can just imagine someone saying, "I don't know who I talked to...it was the lady without the eyebrows", or someone just flat out saying, "what's wrong with you?". I worry that my relationship with my husband will change, that I'm not strong enough mentally to do this, that I won't be able to keep working through treatment and we'll end up bankrupt...ok, do that's more than a couple of worries. Sorry. Can you tell I'm a worrier by nature?



Alicea-thanks for the huh and the vote of confidence! I hope I find that it's not as bad as I imagine either.

Lumpynme

nsmolen...all valid worrys!

i would ask if you have someone who can jump in to help with your lil one? a grandparent or favorite auntie or babysitter or a neighbor? one of the most important things you can do for her is that when she sleeps you should!!!! (that was always a hard thing for me as a mom!now i'm a gramma!) do you have a rocker? sometimes the best mom n me moments can be just holding her and rocking, sing or cuddle....she'll know!!!!!!

hair loss is actually a worse worry than any of us should let it be but it's natural!!!!! do you know yet what"cocktail" you are going to have at chemo?  i had very long thick hair which i chose to have cut very very short so that when it came out i had at least some control over it ....i hate not having my hair however it WILL come back!!!! there's a website where you can get a free (up to $100 value ) wig -Crickett's Answer for Cancer is the organization; the app is easy to fill out ..crickett's mom and aunt do this in her honor..i got a very nice Gabor wig of my choice.

work-wow- people can be so ignorant so i hope someone else can come up with some good comebacks for you! what you tell ppl there is your choice....you need to get some "titanium big girl panties" so that their comments won't bother you so much!!!!! easy for me to say, i know!

there are places who can help with money- one thing i would suggest right now-today or tomorrow-call the american cancer society-they offer gas cards to help cover treatment days- they do base it on income but they also date it back to the first time you call about it so if you qualify they consider it from this phone call. they also can set you up with thelook good feel better program where you get a bag of makeup etc and learn some tips and tricks-in past,i sold avon and marykay for years but i still feel like i need help getting past the eyebrow thing! are you a member of your ladies VFW? maybe not at your age but they have a cancer grant of $500. you have to be a member for at least one year to apply.somebody said something somewhere about kohl's having a gas card?

as to your husband...he is probly scared too so this is a journey together.all relationships take work and good communication. talk to him about your fears and concerns.schedule date nite or couch comfy time..lean on each other!

do you have a belief in a higher power? call on that belief! 

love yourself thru this! rest when you can and don't worry about being supermom! if someone offers help-take it!! even if it's a friend coming over so you can nap or take a bath! if i weren't XXXX miles away; i would!!!

Linda4559

nsmolen.....take it slow...deal with things as they happen, I too love my hair and am worried about losing it, or having it not grow back.....no hair means Cancer and everybody knows it/sees it.  My younger sister had C 5 years ago and her hair came back gorgeous and long!  She said many strangers were nice to her when they saw her with a scarf/hat on, and she wore bright lipstick all the time...."show 'em who the

#@1*"! you are"......it's gonna be hard and I'll probable freak out and cry.....you'll be OK,just think of us like the Phoenix....rising from the ashes......Bye for now, got to get some sleep...can't think about this anymore today, it's overwhelming sometimes...

Lumpynme

linda is so right- think of us like the phoenix!!!!! we ARE woman-hear us roar!!!!!!

it's hard....ya have to believe in yourself and find your inner strength!

Love74

Hey everyone. Welcome to all the new Marchers. Yesterday I had my 2nd of 6 tch. So far my only se is heartburn which I got a prescription for this round...and tired from the steroid high. I haven't slept much since Thursday but I feel lucky to not have any other se's. In about half an hour I will give myself the nuelasta shot...can't wait!!!



To all of you awaiting your first chemo...make sure you read the earlier months. Most of the side effects can be managed quite well...except the hairloss! i went from having hair halfway down my back a week ago to an ugly buzz cut. It was a horrible day but it gets better and easier each time I walk out the door with my wig. Please ask questions...there are so many caring peope on here that have great advice and tips. I am so happy I found this site when I got my DX.

Amymomto5

Kraemermom - I have 5 kids too, how old are yours? 

Leveled - I am scared too. I start chemo Tuesday.  I like what Margo said about the worrying and waiting being the worst. I know that's how it was for me before my BMX. After it was over it was still hard, but less tears, for sure.

Today I bought 2 wigs. One is a monofilament, lace front that I love. The other doesn't have a lace front and needs to be thinned, but I like it too. (Karri, I went to Tina Marie's by JCPenney in Conway) I'm tempted to wear one to church tomorrow, but DH doesn't really want me to. This hair thing is really hard. It's easy to hide missing breasts (love my prosthetic silicone breasts, that I am using til reconstruction). But hair... We need to remember that this too shall pass.  Our hair will grow back.  Too bad breasts don't! 

kltb04

Amy I going to check them out too. Since I don't work outside the home I am not too worried about people seeing me and saying "your hair didn't look like that yesterday" so I think I want another one in a different style and color.



I was going to email you today but I'll just tell you while I'm here. Didn't get PET results yesterday and I was too scared and out of it with the fever to call. So DH called without my knowledge today and found out they don't have them at the WLR office since my appt is NLR but they did have the CT and mUGA I just did yesterday (guess that they just got them in) and the CT was clear and the MUGA was an acceptable level so that is some good news.



To all the newbies check your local hospitals for programs that provide free wigs and head coverings. And the Look Good Feel Better programs mentioned in a previous post. The one I went to wasn't income related but everything was free. A Paula Young wig, two each of sleep caps and bandanas (made by volunteers) a hat and little miscellaneous things.