Starting Chemo May 2008

KristyAnn

I finished tx 2 today- Roxi, it is treatment 2 of 6 so I still have a while but I am 1/3 finished with the chemo part anyway. I had a great nurse (not my previous chatty Cathy one) and we were finished by 2 PM - the PICC line means no IV, the pharmacy was faster and the herceptin is a 30 min drip now (instead of the 90 minute drip like the first time). I took my anti-nausea at 4 PM- wasnt feeling nauseous just a little queasy- last time I took it chemo day and the day after and did fine so I think I will try that again this round.

A friend just called and said she is bringing soup - my favorite food chemo day and the first week while my mouth feels slimy .Friends bringing food has been the most glorious help in this situation- even if I dont feel like eating I know the family is covered.

Well I better get off here for now - hope everyone on treatments is feeling OK and everyone coming up has a no-side-effect time for their treatments.

I LOVE SUNGRUBBIES!!!!

Kristy 

EyesOTex

Ok, ladies, I love you all but I'm going to need a note pad to keep up.  Because my "interweb" has been down I have lots to read and just want to weigh in with cyber hugs and good wishes for all, even if not by name....YET!!!!!!!!!

dc

familyroks

Kristy - YAY for being 1/3 rd through!  I like that thinking.  It looks like today was a better experience for you..I'm all for that.  I hope you are able to enjoy some of that soup with your family.

I felt incredible today!  Truly amazing.  Just a little discomfort with this darn cornea thing but overall just a great day.  I'll take it where I can get it.

Sending positive vibes to you all.

~Adrienne

rock

Pssst! Otter! Everyone! Check out:

www.sparklingearth.com/products.asp?category=100044

http://www.bandanas.net/skullbest.htm 

http://www.myskullcaps.com/ 

Heck, I bet we could make some of these!

Also, www.sungrubbies.com

Happy a lot of us folks are feeling good! (And I hope all the Wed and Thurs chemo women get a good night's sleep.)

danismom

Hi Everyone,  I ordered some really cute hats from headcovers.com.  There is one in particular that is made for summer months.  It's really soft and has a bow on the side that is detachable.  Both my grandchildren are playing softball so I think I'll try one of them out then before any hair loss, if I loose it, just to get used to them.  They cover the whole head.  I've already received my wig and have an appt at my hairdresser next week to get the "thing" and me coordinated hair styles.  I haven't tried it on yet though.  I'm just not ready......

Hope everyone that had a treatment this week are doing ok.  I am impatiently waiting until the 27th.  I'm on another round of Valtrex for my shingles and still on antibotics to prevent staph infection in the open wounds from the shingles.  I hope I never get them again, they are horrible.  

I don't have any classes here to prepare for Chemo.  My onc is 2 1/2 hours away and comes here everyother week.  So, my first and third treatment will be here and second and fourth in Little Rock, AR.  I wish there was some kind of class here.  BUT, being a part of this thread has been the best thing I've done.  Everyone is so great about talking out different issues and I've learned a lot.

Thanks everyone! 

wondering7

Hi

 I am starting May 20. Don't have all my info handy. My SNB was negative and we are working toward a lumpectomy. Four rounds. Can't decide about a wig. Bought some scarves. Went to a makeup class. Contamination and catching illnesses seem to be important to keep a heads up about. Am a little nervous about so many meds but some of you sound so on top of it. W

haykat57

Hey, anyone still up?  I had to have a shot of neupogen and procrit today and boy am I achy now.  Dr. said no nsaids, only tylenol, but it isn't cutting it.  Any suggestions?  How long will this last?  I'm supposed to make a road trip with my son tomorrow and I'm not sure I can do it if I hurt like this all day.  I also read about the shingles that danismom had and I have a similar condition that flares up on my tailbone and forgot to mention it to the doctor today.  I'm starting to get a flare up.  Tomorrow may end up a lot different than planned.  Any advise would help.

otter

haykat, I'm still up but I can't offer much advice--just sympathy.  How far are you into this round of chemo?  My onco said Advil was fine for the first 6 or 7 days after chemo, but to back off after that so any fever I get would be detectable.  I get my Neulasta shot on the day of chemo, which means I get the aches and pains a few days after that. They're pretty much gone by day 7.   I feel for you, because Tylenol has never worked for me at all--not for any kind of pain or fever.

I have been told by my onco and nurse that staying active (walking, getting exercise) can help minimize the pain from the Neulasta shot, so that might help with Neopogen too.  I do know how hard it would be to go somewhere and act like you were having a good time when you hurt that much. I hurt something awful during my first round of TC, and I blamed it all on the Neulasta shot even though some of the pain was from the Taxotere.  My second round was much better--much less pain.  I don't know why, because I didn't do anything differently and I'm only taking a couple of Advils (and no Claritin) for the pain.  Must have been lucky, I guess.

Wow--so you think you might have shingles?  I had a terrible rash on my scalp last tx cycle, and my onco nurse was worried it might be shingles.  It wasn't, though.  My onco thinks it was folliculitis.  I don't know what it was, but it went away after about a week and a change from my regular shampoo to Johnson's baby shampoo.  Any shampoo is sort of a moot point, since I have no hair left except a thin fringe around the edges.

Call your onco about the "flare-up" of the thing on your tailbone.  If it is shingles, they can give you something to relieve the pain and help make it go away.

rockthebald, you are an inspiration.  Thanks for the web link--I agree that we could make some of those, but they're so darn cheap that I might just order some.  I bought a bunch of fabric to make scarves, but I only got as far as setting up my sewing machine in the spare bedroom.  My onco thinks it's funny that I haven't shaved my head, but the chemo nurses said they liked my caps and scarves and they wondered why I still had "so much" hair.  I think they were just being nice. 

To those of you who aren't getting a "chemo class"--I didn't get one either, and I was really worried and intimidated about that.  Then, on the first day of my chemo, my chemo nurse started my i.v. and gave me a 20-minute "orientation" in which she explained what was going to happen.  She had me watch a short video, and gave me a big, fat portfolio (with fake-leather binding, no less) that contained everything they thought I would want to know (and more) about cancer treatment and chemo.  Some of it was specific to my treatment regimen (TC).  There were also separate sections with blank charts for recording drugs taken, phone calls made, doctor's visits, SE's, etc.  I threw out most of the stuff, which was no longer relevant; but I am keeping all my records and lab results in there, along with the charts of medications, SE's, etc. It's really handy.

I didn't get a tour, though, but I've found out recently that there isn't much to see.  They actually have 2 infusion rooms here.  For my first 2 tx's, I got to choose whether I wanted a chair or a bed.  The beds are in small rooms with curtains and there is a lot more room for stuff and friends, so I chose the beds those times.  Ordinarily, a friend or family member can only be with you (here) for your first treatment, because it's so crowded.  For my 3rd tx, I was assigned a really comfy chair in the "new" infusion room, which has fewer chairs but more space.  The chemo nurses said most people choose the chairs, because there are people to talk to and more activity to watch.  They have to beg people to use the beds.  I've decided I like the chairs better, too.

You will all do fine.  It's really scary at first, but after once or twice, you'll feel like a veteran and you can help calm the newcomers.

otter 

wondering7

Under Chemo tips someone said to use Aleve but I would stick to Tylenol for me.W

otter

Our oncos all seem to give different advice, but I think it's best to follow what they say.  I was just wondering if haykat is far enough into her chemo cycle that her doc is not wanting her to suppress fever by taking an NSAID.

My onco recommended Advil for the Neulasta bone pain in the first few days.  She does not like Aleve because she thinks it is more likely to cause gastric problems, which some of us are battling anyway due to the chemo drugs we're on.

Wondering7, if Tylenol relieves the bone pain for you, that's great.  For many of us, it wouldn't touch that pain.  I guess everyone is different, and each of our onco's takes a different approach.  YMMV! 

otter 

drcrisc

Hi all,

I'm posting late and having trouble remember everyone now. 

Welcome Wondering7 - Sorry you're here, but this is a great group.  Have you had any biopsies?  How do they know which chemo meds to put you on?  If they know that, then they know all your other info, too, like most of us have at the bottom of our posts. 

Rock - thanks for the links.  I looked at this first one and love the "Crazy Bitch" skullcap, but my 4 y.o. would probably walk around repeating that, so I'll have to pass on that one.    Might get another one though.

Haykat - I don't have any advice, haven't been there yet, but I sure hope you get some relief. (((((Hugs)))))

Happy Friday everyone!

haykat57

Good morning ladies.

Well, I'm up and feeling better.  Most of the bone pain is gone, I hope it stays that way.  My onco nurse said only Tylenol, not to take Alleve, but I'm not sure about Advil.  I don't usually need pain medication and when I do it is usually Alleve or Tylenol.  Is Advil an NSAID like Alleve?  Now I'm running a fever of about 2 degrees, so I guess I will call my doctor before I leave.  I have felt fine, with only some fatigue and a couple of bouts of nausea (mostly from poor planning), so I didn't think there would be a problem planning this trip. I'm supposed to go back to work tomorrow, too.  This is not working as I planned. {?*&@!!

gogators

Good morning everyone!  One of the guys from work will be here in about 15 minutes to take me to the hospital for the port insertion today.  I didn't sleep well last night, kept having dreams that I "forgot" to have the surgery done today (wonder what that means??)  Not nervous amazingly enough, just ready to get this show on the road!! 

I'll check in later.  My best to you all.

Tina

cbme123

Hi all!  Sorry I haven't popped in the last few days.  Went back to work on Tuesday and it has wiped me out.  Not sick, really, just very tired and a little queasy. Mom's day sucked (and I never use that word) but it did.  Haven't read all the moms'stories and I hope everyone's special day was better than mine.  As I stated in an earlier post, I was diagnosed in early February, my mom went into the hospital 3 days later and died March 7th.  She never knew I was sick.  Dad and I buried her March 11th, my bi lateral mastectomy was April 11th, and now Mom's day was May 11th...lol.  As negative as I am sounding, I'm really not.  I'm ok.  I know she is very much aware of what is happening and around me alot.  Last night I had a small melt down (we need those to bounce back) and my cats were All over me nudging and nibbling and meowing.  I knew it was mom letting me know she was there.  They are love kitties anyway, but not to that extent.  Anyway, enough said on that front.  I've missed you guys these past few days.  This week hasn't been too bad.  Had the bloodwork up yesterday.  White blood count was halved but the rest were fine.  So all is ok.  Getting ready for work so will say bye for now.  Everyone have a Great day.  I will check in later today.  Love to all!   Carla  

nmjohn

Otter-thanks for the heads up regarding the other threads and your obvious involvement, knowledge and encouragement in all these conversations.

Rock - thanks for the encouraging words.  My docs have mentioned BRCA testing after the chemo is over.  There is no family history, I'm the 1st, so I'm still on the fence about it . . . something I'll deal with later, I guess.

Crafty - I'm so glad to see someone from the area (sorry for the circumstances).  I am at Gray, although going to the Avon office today due to scheduling issues.  I'm planning to head to Htfd for tx 2, 3 & 4.  You are approx 1 week ahead of me for everything - tx's and fills.  I have my 1st fill next week.  And, you won't believe this, a long anticipated, dear friend's wedding at the end of June!  Looking forward to sharing and supporting each other through all this.

Well, must get ready to go - 1st tx this morning - wish me luck!  I'll be back over the weekend. 

Thanks everyone and best wishes for a pleasant weekend.

Nancy

familyroks

Nancy - Good luck today!  You'll do great.

Rock - Thanks for the links!  I love, love, love the skull caps.  I'll be ordering today.

~Adrienne

wondering7

Good Morning

I don't have all my stats because I had an SNB only with negative results and am doing chemo for a lumpectomy hopefully and do not have a complete pathology. The tips about mouth sores and constipation were good so that should help me. I  will be taking A/C, compazine, ativan, emends, dacradon, neulasta. I was told to take only Tylenol because ibprofen (Advil) is a blood thinner and you want your blood counts to be good. If you need a painkiller ask the doc for something especially to sleep at night. I live with my husband and son. They just want me to get better but they do not want to hear about side effects or hair loss so I try not to upset them, so this forum will help me. I have a good medical team that I trust as much as possible so I try to listen to them and filter out what does not apply to me, as they keep telling me everyone is different and it may not be so bad. Hard to imagine!!! But I did tell several nurses that I am nervous about chemo and that helps them to respond to me as nice as possible and to keep the emergency phone number handy. So talk to them nicely. They have so many of us to deal with. I was one of four women in surgery the other week and that was just one day out of five for them. I learn more by being nice to them because they are also very stressed trying to save us and it is a bit like gambling, no one knows for sure. I try to stay positive and strong because the other choices are not as good. My husband just counts the days until chemo is over like " its only 67 more days til the last one" and he keeps me up that way. Anyhow I am rambling and I have a lot to do to get organized, like food shopping for me,  paperwork, cleaning up. Thanks for the welcome. I hope I am this cheerful for the rest of the ride!! PS I was told if you are estrogen positive  soy products and high fats work to feed your cancer so keep that in mind. W

rock

sorry for quicky post:  here's another site for skullcaps (fewer choices, but the style is a little different) 

http://www.myskullcaps.com/

robink

Family:  Glad you are feeling good.  Here's to a great weekend!

Rock:  Those links are great!  I think I'll ordered from that 1st site, even the Crazy B skullcap for days I actually feel that way.  Hat, ball caps, turbans and scarves have not thrilled me too much but I think I'd actually wear the skullcaps.

Danismom:  Hope your shingles are healing and your pain at least controllable.  I have one wig and have ordered two less costly wigs from the paula young web site, just for fun.  Taking them to a hairdresser is an excellent idea.

Wondering:  Welcome and good luck with you 1st swim in the chemo pool.  I was very nervous 1st time and found it to be no big deal.  #2 is the 22nd.  DH and I hope to see a movie after I'm done.

Haykat:  I don't get those shots so I'm no help to you.  I read that you are better this morning and am glad for that.  Do you have any extra Vicodin or some narcotic left over from surgery if the pain gets bad again?  Re: flareup you should call your doc for some Valtrex and or the antiviral cream to put on the area.  And wash your hand very well after tending to yourself.

Advil is an NSAID.

Otter:  You are so incredible!  Friend, Room mother, Professor and comic.  Thanks for you!

Cristine:  are you handing in there OK while playing the waiting game?

cbme123:  Will you be able to rest over the weekend?  And can you delegate responsibilities at work if necessary?  I'm sad for you and you Dad for the loss of your mother.  Take comfort and find joy in your memories.

nmjohn:  welcome to the club and I wish you a smooth dive into the chemo pool.

To everyone:  here's wishing you a trouble free weekend!

Robin K

angelsaboveus

Happy Friday and long weekend to those of us up north,

Carla I am so glad you posted , I kept thinking about you wondering how you were! Boy , you had a tough road leading up to your first tx, thats alot to process in a short period of time. You were not negative at all, you were just telling it like it is, and those meltdowns don't make you weak they just make you human and they can be very theraputic!  Aren't cats great, as indepnedent as they are, they are great comfort when you need them. (As any pet is!) Hope you have a good weekend!

Haykat that sucks you have all that pain I hope you can still do that road trip with your son, but do take care of yourself first!  

Wondering7, it's tough starting this chemo road, i know i'm only a week old. The worst part for me was the unknown, even though you get valuable info here that has made this so less frightning, when you are sitting in the chair waiting for it to start, it made me a little nervous. But once it started and I didn't feel anything, I'm asking thats it? It's all pretty uneventfull you just sit there drink and go pee, and they do the rest.  (thats how it worked for me anyways)  And when you get home, rest your body and your mind!

Gogators, good luck with your port today, and Nmjohn good luck with your first tx today, even though you are not a newbie to all this , it makes it no less daunting i'm sure.

Well I ordered my some hats and head scarfs from headcovers.com and plus a partial wig called a halo for under hats, thought it might be cooler, see if i can fool anyone!  Just not ready yet to commit to a full wig. I got a call and I have to go for a Rad consult next week to see it that is in my future after chemo,(that would be in Sept. sometime) I have to go to a city 4 hours away for rads if needed which kinda sucks so I would be there for 3 weeks straight without family. I guess 3 weeks is more doable than the alternative! it's just hard to wrap my head around rads right now with just starting chemo. 

The ramble is over, hope everyone has a good weekend , good luck to anyone on tx today!

gogators

Afternoon Ladies!  I'm back from the port insertion surgery.  All I can say is thank goodness for pain meds!  I have more pain with this than I did with both of the laminectomies combined!  The pain meds help it, but I really wasn't expecting this kind of pain.  I know in the long run I will be glad to have it as the nurses had a heck of a time finding a vein for the IV for the surgery!!  They even left a needle hook up with a little "thingy" hanging off of it so I won't have to be pricked for the first treatment....BONUS!!

Now, all I have to do is WAIT for the 22nd.  This has seemed like such a long journey already.  I found the lump in the beginning of March, I'm ready to get rockin and rollin here!

Christine:  are you still a go for the 22nd as well?

Have a great Friday everyone...

Tina

KinAZ

Hi to All,

I will be starting chemo May 22nd....I am just glad to get going.  Was dx in Mar and wont have surgery till after chemo....Surgery was rescheduled for July but I dont want to wait any longer....so we are doing chemo first.

Sounds like a long hot summer ahead.  Dont know if I want a wig or not.... maybe better to get it and not use it, than to want it and not have it.  Nothing is easy about any of this. I am glad to have all of you here, altho I wish none of use were here!  Have a good weekend

Karen

cbme123

Morning all!  Decided to shave my head on Monday.  Knew I would be losing it this weekend anyway, plus I needed color deperately, roots were an inch long.  Was ready to do it, glad I did it.  Have been wearing different fun wigs all week.  Bought something yesterday that is Great.  It is a turban with an elastic bow at the nape of the neck so it stays on great, keeps the back of your neck warm and looks Great under hats, even ball caps.  My son thought it was a (do rag) ?  Bikers wear them, I think.  Getting ready for work this morning, choosing a longer style today.  Have to keep everyone guessing, lol.  My advice is buy 2 or 3 if you can.  It adds variety and enables you to make choices.  The wigs with highlighting are flattering and add softness to your face, improves your coloring.  Try and keep this as fun and positive as you can.  Put some makeup on when you go out, even just a little.  When you feel you look better, you actually start to feel better.  I read that in an amazing book called, "Uplift", a book full of breast cancer testimonials, and I got so much out of it.  It works for me.  Everyone have a great weekend!  Love to all.  Carla  

robink

Carla-where did you buy your turban? Ihave been looking at a few extra wigs, just for fun and there is a link on the T/C web site for skullcaps with terrific patterns.  Things I actually though I would wear.

To All:  have a terrific weekend regardless of your place in your treatment cycle.

EyesOTex

just a quick note...

haykat, if you have 2 degrees fever you must call your dr. right now!  Especially if you are taking Tylenol and still have that much fever.

to all:  when i had ACT and Neulasta AND unhealed surgical wounds I ended up on oxycodone (NOT the same as oxycontin).  The onc finally said you are never going to heal if you're in this much pain all the time.  There are other things to try...tramadol, vicodin, that are stronger than over the counter but I know that bone pain, wherever it came from, was not fun.  So ask your doc.  You are suffering enough.

my opinion, as if ou wanted it

dana

gogators

My this thread has been pretty quiet today. 

I have a question for you all.  Here's some background.  I have been sleeping on my left side since I had the lumpec. on the right side and I have back problems.  Fast forward...I have the port put in on the left side, so now I have been sleeping on the right side since the lumpec. has healed and is no longer sore from the seroma.  Tonight, I am lying in bed eating popcorn, I spill so I get up to pick up the pieces and there is a wet area where I was laying, my breast opened up at the incision and is leaking.  This happened with the first lumpectomy when I still had the stitches, but now there are no stitches.  I'd say it's about 1/4" opening.  There had been a lot of scabbing there and after port surgery, the scabbing seemed to have been gone.  Do you think they "cleaned it up" while I was under?  Do you think this will postpone my 1st tx on Thursday?  I have been wearing a bra constantly since the surgeries, I have large weighty breasts, do you think the incision could open up more? 

Thoughts and suggestions needed.

Tina

rock

Tina,
I hope someone more useful posts but I wanted to at least post to say "Oh my!"  I'm thinking, when I had my surgery, I could call any time, even in the middle of the night on a weekend, and there would be a "surgical breast fellow" who could answer my questions.  I'd recommend calling the hospital and ask to speak to a breast surgeon/fellow/nurse. They might have some good advice (should you use an antibiotic cream to avoid an infection?), or at least can put your mind at ease. 

One small thing:  I put a band-aid on a part of my incision that wasn't quite healed and when I took the bandaid off a few hours later, I ripped my skin off. It apparently was really fragile from the previous 2 surgeries. So be careful . . . gauze (w/ paper tape) may be a safer approach.

Take care.  (And think about giving the surgery folks a call.) 

PS "Cleaning up": that seems entirely possible. I'm pretty sure they swabbed my entire chest and arm with some yellow stuff! 

gogators

Rock:  actually (I know this sounds crazy) I put a maxipad in my bra with no tape to catch the fluid as tape just eats right through my skin.  I have actually found that maxipads work wonders, they really do "keep the moisture away from your skin."  Could you just imagine the commercial for that one???

I think I will give the surgeon a call.  I'm just so darned worried about tx being postponed again.  It's been almost two months already!

Thanks for the reply!

robink

Tina -  call your breast surgeon.  Tonight to let whoever is on call know what's going on.  I would imagine our doc will want to see you on Monday but perhaps someone should check you tomorrow to make sure you don't have an infection.  If you put any dressing on it make it loose and be carful with the tape so you don't irritate your already fragile skin.

I can't speak for your onc and delaying your treatment.  Call them Monday also.  Better to delay treatment then to put yourself at risk if you aren't well healed.

I don't believe in luck, I do believe in prayer and I just prayed for this situation.

gogators

Thank you Robin, I appreciate the prayer.