Starting Chemo January 6, 2014

belleb

I shaved my head today. I'm only 13 days out from my first A/C infusion, but I didn't want to have to deal with it when I'm knee deep in feeling crummy at the end of this week (A/C #2 is tomorrow). I'm surprised at how cold my head is! I'm "nesting" today, trying to get everything caught up before I head in to this week. I feel like I'm pregnant all over again lol

sammie10

otceb, that's exactly how I described my wig "too poofy", what is with that?  Plus I'm a red head and the "best-match" wig they ordered is too blond and I look ridiculous blonde.  I may be going with a hat a lot.

atlbc, thanks, I think I'm going to try claritin this go round.

lisacm, sorry the hair is so hard.  It really does suck for now.    I did felt better once I took some action and whacked my hair off but I it was soooo hard to start.  Have you gotten a wig or hat or scarves?

lisacm

I have hats. Not too many scarves. I've been avoiding the reality of what was to come. I need to watch some you tube videos on how to tie scarves. Cancer sucks.  I find myself watching tv and saying she doesn't have cancer, he doesn't have cancer.. Why the f$&k do I have cancer? Not that I would wish it on anybody else. I'm just kinda angry these days.

belleb

My wig is too poofy too - it's got way more volume/body than my natural hair ever had and makes me look like a news anchor from 1990 or something lol 

Lisa, I do the same thing and look at other people and think "why me and not them?". I feel guilty saying that, as it's not as though I wish cancer on anyone else, I just can't wrap my head around why I am the "lucky one". I also try to picture everyone bald now.

otceb

It feels so good to know that we're not alone in this crappy experience! We get what each other is going through, it's very precious! Thanks to all for being there!

Sam2U

Just to rant for a minute I'm 10 days out from A/C #2 still a bit fatigued, but I think it's due to getting my period-no chemo-pause here either, getting ready for #3 on Thursday.  My hubby decided this week was a great time to take in a class for work, he left today for the week.  His boss didn't make him go, he chose to, so he could get a break from cancer.  He wrote a list of things the kids and I need to get done before my chemo--I told him to shove it.  I have work, music lessons for two kids, drs appts for two kids, sports meetings for 2 kids(at the same time in 2 different places), college visit for 1, and that's in addition to the "normal" week stuff.  Not to mention my father is in the hospital with congestive heart failure--yeah shove the list of cleaning, shopping, changing the oil in the car, adding washer fluid to the car and picking up packages for his job that he can't do because he CHOSE to go to school.  

My kids are older: 11, 12, 14 and 16 so they will pitch in and we will make it work, but he's going to have to work hard to make me forgive this.  

Also, I've got to get someone to drive me to and from the treatment as I get a "buzz" from the steroids/premeds.  Stupid Cancer.  I wish I could take a break from cancer.  

Sorry--rant over.

Mor

sam2u.....

Oh, how I feel for you.  You just rant and rave all you want.  We are all in the same boat, but some of us get more support at home than do others.  I have only been through one of six chemo sessions.  My husband keeps telling me not to take the meds, they make me feel terrible.  Wants me to call the MO, telling her he wants me to find a doctor who doesn't make me sick.

He just doesn't get it.  The cancerous lump was removed so all is okay according to him.  Being that a lymph node only show a little bit of cancer why must I have chemo?  Onco score was 27.

At times I scream around the house like a "crazy lady".  So  my friend let it all hang out.  We are rooting for you.

I meant to say he doesn't think I should have any more Neulasta shits.  AAAARRRRRGGGGGGHHHH.

Mor

I meant to type shots, not what you read!

Njmom3

well I just wrote this whole big post and puff I lost it argggh.  Lately I find myself looking at people when I am out to see if they have a wig on, or one boob, or are bald, almost to validate me going out and not being the only to look like this.  I'm so ashamed and certainly don't wish this on anyone, but I'm jealous of those I see that I think are ok and I'm suffering with this.  The thing is just because they look ok, I dont know what they are going through, so I try to keep that in my mind.  But when I see a big boob woman with a low cut shirt grrrr boy am I jealous and sad!

Got my Port put in on Friday and Tuesday I will try this sucker out for the first time.  Petrified to say the least, too many unknowns for a control freak like me,  I know many people get steroids and other meds to take the night before, all I have is Ativan, zolfan. And Emla cream.  Def taking that Ativan, I know what to do with Emla not sure about zolfan.  Also bought some Claritin for the nuelastra shot the next day, not sure when to take that either.  I actually got one that dissolves so in case I get sick, it will be in my system.

I had my long hair cut short in a cute curly bobish mess, the problem is curly wigs are so poofy and fake looking!  I settled on one that looks like I flat, ironed the front and left the back curly, somewhat doable.  My fav purchase is a black ball cap with hair that hangs out the bottom, while it is straight, again i could have flat ironed, which I did on some occasions.  I can see me running to target etc., with this on vs futzing with the wig.  I bought all kinds of skull caps, scarves, and a halo of little curls to peak out from beneath any hat, so I am physically ready, mentally... Not so much.  No sure if I'm going to shave or what, I'm not sure I'm strong enough for that, although the clumps scare me.  Did you ladies do it yourself or go somewhere.  This is the part I'm dreading terribly.  Thanks for listening.  I'm usually in the February chemo thread, but I was lurking for some experienced opinions...  Wishing everyone a great week!

stephaniegee

Hey everyone,

Kind of off topic but has anyone else been following Amy Robach from Good Morning America? If not you can google her, she is also going through chemo and started late Dec. Her diagnosis, surgery and treatment has kind of coincided with mine so I like to check in and see where she's at. She televised her haircut last month and talked about how difficult it was for her. I also just heard she's going to be writing a book about her experience. However, I saw this morning she is in Sochi covering the Olympics. I don't know why this bothered me. Here she is saying on the one hand how difficult the experience is, and on the other she is travelling to a once in a lifetime experience and still has her hair?!?! I don't know what her treatment is exactly but there is no way I could be doing that right now! I don't get it…

Sam2U

Stephaniegee--not trying to go too far off topic and I know everyone deals with different things, but I am concerned that the media makes this disease and the treatment out to be "glamorous" when it's not at all.  I saw Amy Robach on the cover of people shortly after her surgery looking perfect-it's so not my reality--but hey, maybe I'm the odd one out?

NJMom--maybe you have Zofran? if so that's anti-nausea and I take as needed.  Claritin I take the day before, the day of and 2-3 days after the Neulasta shot, I've only had minimal bone pain.  On the hair--not sure what chemo you are starting, but with A/C mine started "hurting" about 14 days after the first treatment then coming out in handfuls on day 17.  We buzzed it then, that way I could "step-down" from hair to fuzz to no hair.

Mor--thanks for understanding.  My hubby is mostly good, but like most men, he has his moments.  He's the opposite from yours on the cancer removal--he didn't see the point in the Ocnotype, he said you're doing chemo regardless.  I think men aren't taught common sense sometimes.

sammie10

Sam2u: Wow, that is really tough, how clueless.  Good thoughts for your week. 

NJMom: I thought a lot about whether to get my stylist to shave my head or try it myself.  I decided I wanted to do it myself in case I got too emotional. (I didn't)  It was hard to get started but I did it on my own, I cut it (long hair) with scissors to about 2 inches, then used a shaver to take it down to about an inch. In retrospect, I would have done as several suggested and cut it in a very short hairstyle before it started falling out. 

tekwriter

Hi all,

Ranting in please.  I am so tired of being tired. I could never do the list. I would be a big fail.  My kids are grown thank the Lord.  I get angry sometimes with them that they don't get it and don't help when needed. they are still at home.  My husband gets it.  He has been so good.  He has shaved his head and plans on keeping it shaved but I still want my hair back. One of my friends at church had TNS but I found out she didn't even have to have chemo.  I wanted to say no fair, but what is fair, this all sucks big time. I find myself watching at the cancer center for people wearing wigs and looking to see if people are wearing prosthesis also.  It has opened a whole new world I never thought of before.

Thank goodness for these boards.  who else can you tell when your hair hurts. even my husband didn't get that. he says your hair can't hurt. but it does, or yes it does.  now i find i have to do without it for another three months of taxol. darn, i don't even know when my surgery is. I am going to try to get some timeline from my mo this week. wow that felt good.  Thanks girls.

belleb

Rant away! As supportive as our family and friends may be, NO ONE understands like someone who has been through it or is going through it currently. I've bonded with several people who are friends of friends who reached out to me when I was diagnosed and their input is invaluable. I have texted them with embarrassing questions and called them to cry to. We are here to listen to the ranting and lay out rants of our own. No one should have to feel bad or apologize for doing so - it's all part of the journey! 

Tekwriter - the good news is, that 12 week schedule of Taxol is supposed to be really well tolerated and a breeze compared to A/C. I'm not sure which regimen they will give me for Taxol yet (we will cross that bridge when we get to it) but I'll find out in a few weeks, I suppose. Hang in there!

rabbitvelvet

Rant away ladies.....we deserve to air our pains or displeasures as we see fit.  Being women in 21st Century America means that we still battle inequalities both in our home/child responsibilities as well as our reaction to them....tough/stoic/put yourselves last? Anyone?

As for the hair issue; I clipped my long hair and sent  it to hats with hair.  Then when my pixie cut started to come out in the shower, I had my head clipped.  The wig is neat but I've been too sick to care to bother with it.  Instead I have a lot of turbans, ski caps and scarves for going to the store.  So far I haven't felt too weird.  What I do think about is how survival rates have changed over the last 35 years.  As a young nurse I had a hospice patient in the1980's who didn't even make it to 5 years survival. We are so fortunate to have this terrible disease now when there is hope and a far better survival rate.    

Asb

I got some good news today. My genetic testing came back and it was negative. No hysterectomy and I don't have to worry quite so much about passing this to my daughters ( or sons).

My rant is my two very sweet but very OVER protective friends who seem to think cancer has made me stupid and I can no longer make decisions or do anything for myself. While I appreciate their help and don't want to seem ungrateful, I am still a grown ass woman and know when I need to rest and when to eat.

Carol99

great news ASB!! Quite a relief to not worry about your children's 50% chance!  I dread the day mine get tested.

Sam2U

Asb-that is FANTASTIC news!!!

Maybe if your friends want to help I should give them my "list" :lol   I think a lot of people want to help but don't know how to without being more "unhelpful"--kwim?

Tek-I too find myself looking for signs of women like me--it's a new world.

Hoping for a day free of side effects for everyone.

myra104

Hey Carol I just read you were at Dana Farber, my oncologist was up there, Dr. Caryn Silver, maybe you heard if her.  

I haven't been on here much, just like many of you I am really trying to hold off on my emotional breakdown until after this week.  We have my husbands bday on the 13th, valentines day (its big for the 2,5,8 yr old), and my sons bday Sarurday.

However,  I came on here, read how crappy chemo really sucks and thought ok I'm normal.

Thanks for that, I'm going to take a nap now before the kids get home.  Steph

Asb

Ok, when I got my period a few weeks after my first treatment I was a little surprised, but that seems to be the norm. But today I got it again. It's not quite been 3 weeks. Now I am paranoid that the chemo isn't working.  I guess it is time to do a little research during my snow days.

lisacm

I got my period the day of my second A/C which just made me soo much more tired. I thought periods were supposed to stop with chemo! Looking for the silver linings. I'm hoping not to get it again.  A little nauseous six days out. Not anything I need meds for, but still there none the less. I'm hoping its from my period and not going to be my usual. I'm looking up recipes for dinner on line and the pictures of some of them are making the nausea worse. LoL

Warrior_Woman

Asb - Call your MO and Gyno.  Please do not make yourself crazy trying to research this on the internet.  You'll only frighten yourself.  Prior to starting chemo I had a couple of frequent periods.  I just knew it meant I had some form of gynecological cancer and I sent myself for a vaginal ultrasound.  Fibroids is all that is going on down there.  My point is, because I scoured the internet for answers, I once again diagnosed myself with something terrible because for certain my entire body is riddled with cancer.  I find it highly unlikely your chemo isn't working.  Periods get thrown off for all kinds of reasons.  Call your docs!  

Carol99

Myra104

My MO is dr. Beth Overmoyer. I don't really know any others.  Are you at Dana?

Asb

From what I found out periods can do just about anything, from stop completely to remain the same. Not worried anymore just thought I would have a break from that.  I will talk to MO tomorrow when I go for my he reception, they are closed today because of the snow. 

Sam2U

Well my chemo today was snowed out, yesterday, they re-scheduled for tomorrow, but then they called to say the hospital would be closed tomorrow also so no chemo then either.  The lady that called today said they would just skip this treatment?!?  So come on February 27.  I know nothing professionally about chemo, but is this normal?  If the effectiveness of the treatment is measured by doing 4 dose dense treatments of A/C how does skipping one effect that?  Anybody have any advice or thoughts?

Since this was just a nurse from a different infusion clinic than I go to I will call my clinic on Monday but I was hoping someone may have some experience with changing time between treatments and how your mo handled it.

Warrior_Woman

Sam2U - I have 0 medical training but I do not like the sound of that.  Speak up.  Be a squeaky wheel.  When I inquired in advance about weather delays at my center I was told it is "not ideal" but sometimes necessary and we were talking a delay of a day or two.  At the same time, I do know one person who delayed one of her chemos to go on vacation for a couple weeks.  

Asb

Sam, I have the same situation. This week is a light week for me, I just get the herceptin but it has been canceled the last two days. Since I go for my full treatment next week the chemo nurse said they cannot do herceptin twice in one week. They told me to skip the herceptin for this week and keep on schedule for the other chemo.  I don't like missing it. You would think they could do it on Monday and just adjust you schedule, you would only be a few days off instead of two weeks. I would talk to your MO instead of relying on what the nurse said. It's funny, as much as I dread it, the thought of not having it is worse.

rabbitvelvet

I am 8 days after my second cycle of chemo & have such dry skin on the edges of my hands that the skin has peeled off and the skin underneath has turned bright red and is very painful.  The MO ordered 5% lidocaine ointment for the pain.  Has anyone else had this problem?

Also it's getting increasingly difficult to eat.. most everything tastes or smells funny.  Today I went to the clinic to have a liter of fluid infused and was able to eat a little for dinner and drank my Boost Protein    Can't wait for the SE's to fade

tekwriter

I have to call today to try and schedule my last round of ac hope it is not difficult. I am dose dense also.  they do not open until 10 am today. I was told I go 3 weeks if I have to, so maybe they will schedule a week late.

Sam2U

Rabbitvelvet--I haven't experienced any dry skin issues--sounds very painful-hope you can find some relief.

Tek-my clinic isn't open today, but I will call first thing Monday morning.

WarriorWoman/Asb--it's ironic that as much as we hate this stuff, the thought of what not taking it as prescribed could do in the future has caused me major stress.  The doctor and I are going to have to chat about this.