Starting Chemo Feb 2010?

frosty1

I'm hearing a lot of "don't eats" and wondering what you have heard:  I was told no sushi once I start chemo, which makes sense for bacteria.  But now I'm hearing others say no soy because of estrogen and no red wine because of estrogen.  What gives?  Next thing they will tell me no chocolate!  Anyone else heard of these don'ts?

salsoda62

Hello All,

I haven't been on since my initial post. Is it just me or is having breast cancer like having a second job? All the appointments and forms and all, I can barely keep up with it and still do my real job. I heard this week that I start chemo on the 24th, 10am. AC every two weeks 4x, then Taxol. I'm still trying to decide between the Taxol every week for 12x or every two weeks for 4 times. Any advice? It's so helpful to be able to come here and read all your posts and know that so many of you are getting through this so (relatively?) well. It really gives me hope. I hope you all have a great rest of your weekend.

leta17

makmak30 and Escriibe - Very sorry to hear your news.  If it helps some, a friend of mine is 3rd generation BC, her grandmother and mother are still ALIVE and all three of them Stage IV survivors!!  My friend was diagnosed almost 9 years ago with BC and has had it back in her breast, spine and liver as well as a few other areas.  Her first words to me were, "This is a disease you can LIVE with.".  She is amazing as are each of you, my thoughts and prayers are with you.

airiesrottie - Claritan has been used by many who are given the Neulasta shot to help with the side effects of the shot, bone pain.  Some take it the day of the shot and then 2-4 days following the shot.  One of the nurses had told me that the bone pain is worst with the 1st shot and then not as bad on the following shots....I forgot to take the claritan the 2nd time and only had mild aches....many swear by the Claritan so it does seem to have a benefit.

faithfulc

Day 18 of 1st TC treatment.  Wig goes on.  No buzz yet, but I'm sure over 50% of hair is now gone.    Just noticed that the smiley face does not have hair either. 

Hugs to the new comers.  I can't believe how long the Feb list has become - and this is a short month!

ariesrottie

Leta- Thanks so much for the information . I will be having Neulasta the day after my first round of TC. Thanks for the heads up.... I am very nervous. Are you on that treatment also? Any other advice you can give me. It would be great.. Thanks again. Feel good.

Faithfulc- I will be keeping in close contact with you. I start my first round of TC on this Thursday..... Looked for a wig today... Haven't done anything yet for I'm scared....Will look one more place and decide before the 13th.... By then I'm sure it will be going.....I have an appoint on Wed. for a hair cut.. Not so short but getting there... For this is the first time in a long time my hair is long. Go figure... All these years(52) have had short hair  either the Dorothy hamill hair cut or layered ....who would of ever thought. Oh well... Keep the Faith.  If you can give me heads up on your SE . I would appreciate it... I will be praying for you along with all my other BC sisters who are going through this rough time on decisions or treatments.

Enjoy your weekend. Please feel good!!!!!!!!! XOXO

Donna

faithfulc

ariescrottie, I'm on TC as well.  So far no real SE - treatment day went well.  Had steroids on that day only.  On days 2-4 had one pill of Anzamet first thing in the morning(for nausea) and that was about it.  Energy level quite good.  Had Neulasta one week after first chemo since onc wanted to see blood count first.  Took 2 Tylenols on that afternoon for Neulasta and nothing else.  Had some minior pain but did not need medication for it.  So far so good.  Except for the hair thing.  Oh well.

Good luck on your treatment - you'll do just fine!

grdnslve

started my chemo on the 17th...got the port in the next day.  kind of glad, as i wouldn't want them accessing it yet.  they have called twice to check on me....is that normal, or did someone in the o.r. lose something????

getting ac followed by taxol & having radiation starting in my fourth month.  so far so good, although the neupogen shots do cause some aching....and the port still hurts...sniff sniff..poor me.

ariesrottie

Faithfulc- isn't it a b..ch that we have to go all though this and on top of it all lose our hair...., That's what bugging me the most.... I guess all of us feel that way.... Losing the girls and doing treatment is one thing.... but Hair.....Going for the wig was not fun today... I remember when I was a little girl you played with hair pieces that you attach to your pony tails and played with your mom's wig ( they were in fashion then)......To think that I would being wearing one at the age of 52 for I need to because i have cancer.... Just can't believe it.. Men have it so much easier... They look handsome when they are bald.  My DH is shaving his head the first day I put on my wig... Love him.....

Thanks for telling me about your SE..... You are amazing.... I hope I do that well.....

Courage and strength

HUGS

Donna

ariesrottie

Grdnslve------ I think that's great that they called you....I believe they should..... No they did'nt lose anything......LOL.....You made me smile...

Feel well,

Donna

burley

Hello-just found the group, and would like to join in...

Diagnosed at 39 years old on 12/17/09, IDC both breasts, double mastectomy 1/19/10, first round of chemo on 2/11/10 (my port was placed on the 4th.)

My chemo is going to be 4 rounds of AC, followed by 4 rounds of T, then 5 years of Tamoxifen...I'm fine with it all.

First round went just fine-just about 2 hours.  Accessing the port hurt-it hurts in general.  Just about to pop out of my skin and very tender...the actual incisionn is fine.  I think it's because I'm thin and there's no cushion around it-that and the sports bras I'm wearing 24/7.

I had nausea for about 5 days and was extremely tired from all the meds, but now I feel absolutely fine.  SO FAR, I have not lost one hair. I've heard I should start losing it anywhere from 10-12 days after the first treatment.  Has anyone heard the same, different, or anything definitive?

Grazie47

Just checking in to wish everyone well.

So far day 15 and feeling good, just going crazy at home.  I need to return to work soon or I will lose my mind.   I have watched more TV in the last two weeks than all of last year, heck I even watched RuPaul(sp) show, I figured maybe I could learn from transvestites how to strap on my fake boob and hair. LOL

Leah58

February Sisters,

I had a great talk with my cousin today.  She is an 11 year breast cancer survivor and a retired nurse/educator.  She stated that there has been so much research done to help chemo patients that when we have side effects, we need to talk to the onco nurses and ask for help. 

I had my first TC treatment on Tuesday and had been suffering with nausea for several days.   I took the nausea meds they gave me on schedule each day.   I tried to be a good soldier but finally called the onco nurse.  She said, "Always call us, we will do everything we can to help you."  I was able to get Zofran on Friday and I am so much better!!   So if any of you suffer from post chemo nausea, ask for the "big gun" Zofran or the generic form.   My cousin said it's best to relieve nausea. 

Also, I am having a general feeling of unrest, unease or the like.  Not nerves, just an unrested and jittery feeling that keeping busy doesn't make better.  My cousin mentioned there is a drug named Ativan(?)  It a "good" kind of valium.  I'm going to ask about it on Monday.  She said it helps you relax and sleep.   I am taking Ambien CR to help with sleeping now but oy!  the dreams are unreal.   I'm glad to sleep though.    You have all been such an encouragement.

To all my fellow February members, I pray for all of you and I'm so grateful for this continuing discussion.

Grazie47

Leah58  I had the same "jittery" feeling on day 4.  I tried to ignore it, keep busy, but it was still there.  It lasted about 36 hours.

My Onc said maybe it was withdrawing from the steroids and also recommended "Ativan".

Ativan also worked well for nausea, according to my oncologist -Ativan is the best drug for nausea.

me2u

hi, any advise on getting some sleep at night, its like i am learning how to sleep at night as a baby? am trying not to get hook to the little blue pill however i couldnt get sleep all night. any suggestions on what I can do?

thanks in advance!

Grazie47

Try Tylenol PM

Call your oncologist and ask for a sleeping pill.  Sleep is so important and there is nothing wrong with taking a sleeping pill if you need one.

Grace

Ezscriiibe

I'm getting to sleep okay (now that the steroids have worn off), but I seem to be waking up around 4:00 or 5:00 in the a.m. and then having wandering random thoughts that I can't turn off. I would hate to take a Tylenol PM at that time of night, but if this keeps up, I just may do it.

makmak

Ezscriiibe, I have the same problem with the sleep.. Something I've done is take Zofran or Compazine.. which are the anti-nausea pills, but they also make you drowsy.. but they don't last as long as a sleeping pill.. so it may be better.. helped me get another 3 hrs sleep... Good luck..

leta17

ariesrotti - I am on TC as well 6x with 3 weeks in between, I have had 2 of the 6.  I have had very little SE thus far, outside the hair loss:(  I am on steroids the day before, IV the day of and the pills the next day.  I get the Neulasta shot the day after chemo.  I drink ALOT of water starting the day before and I drink enough that I am forced to get up during the night after the tx.  I have been eating a bagel before my treatment and then eating small snacks in between meals,so that there is always something in my stomach, I have had no nausea, I think because of this.  I also do my best to exercise 20-30 minutes every other day and try to work up a little sweat. Day 4 both times has been my lowest energy day, which is a Sunday, it is also my most 'emotional' day as well.  After that day, I feel realatively 'normal'....I buzzed my hair just before my 2nd tx. 

I  think I am in 'chemopause', I got my period right before my first tx and I am waiting, but I don't think it is going to come...had a few nights of night sweats when my period was due but nothing...so I guess I am greatful I don't have to deal with that for the next couple of months...

I am going to ask about Ativan...or I may see someone about relaxation tecniques, I just can't clear my mind at night and it races through every topic you can think of, or I get some annoying song stuck in my head....would be nice to learn how to focus my mind on sounds of the ocean or birds chirping, anything other than the chatter!!!  Some sleep aids give me nightmares, bad ones, and I could do without those right now as well:)

Be well ladies!!  For those starting or getting their second rounds this week, go get those nasty cells and remember to drink lots of water!!!

leta17

New OncoType DX Roll Call  thread - For those of you who have an OncoType score there is a thread that they are keeping track of scores...I think it is interesting...only part of the decision...but I like to hear how others used the test in determining their tx regimins.

CinD

A big welcome to those joining us now.  I hope everyone is doing well this weekend.

Michele, I hope your MRI and biopsy bring good news. 

Jessica, I am sorry you have had such a bad time. Sleeping was tough for me too especially since the steroids were still in my system for a few days after my infusion. I know you don't want to take pills, but maybe taking them for just a few days will help you to get the sleep your body needs. You might not need them after that. I couldn't sleep for 4 days after my treatment, but on the 5th day, I slept for most of the day. I hope you are feeling better.

Frosty, I know, it seems like everything is bad for us. But I'll never give up chocolate! I gave up wine when I was diagnosed last October, and I haven't missed it as much as I thought I would. I've lost my taste for it now, which I suppose is a good thing, and I really did love a good claret. A recent study reported that just 3 to 4 glasses of alcohol per week increased breast cancer recurrence by a whopping 34%! Coupling that with the data from the Million Women Study out of the UK has a pretty sobering effect.

Yesterday I cried for the first time in awhile, but it was more cathartic than a down-in-the-dumps kind of thing. For the first time since my surgery, I started back with structured exercise. I put in a one-mile Leslie Sansone walking tape, and halfway thru, tears started coming. I used to exercise almost daily, and I remember when this all started last year thinking my days of exercise and taking care of myself were all over. You know how it is when we are first diagnosed, our minds think the worst. Yesterday was like a "you know what, I'm really going to be OK" kind of moment brought on by a return to some sense of normalcy. Of course, then I took a shower, and for the first time, more than a few hair strands came out. But you know, it didn't really matter all that much to me. I just thought, "that's the chemo, it's letting me know it's on the job and getting rid of anything bad that may be lurking." I think I read someone else here had  a similar reaction. I've been getting what looks like cobwebs, maybe 8 to 10 strands, every time I run my fingers thru my hair. If only I can keep my fingers out of my hair. The head coverings are ready and waiting for once I stop shedding more than my dogs.

You are all in my thoughts.  Enjoy the rest of the weekend. I'm off to do another mile now, and this time I won't forget the shower cap when I jump in the shower afterwards.

Cindy 

grdnslve

burley--i was told the hair loss would be the 3rd week for sure.  i'm going to get shaved before it starts falling out...just don't want to witness that. 

leah58--the ativan (which i wish i could get) is an anti-anxiety med that helps to break the psychological cycle of anticipitory nausea due to real  nausea due to expecting nausea due to just nausea over the whole rotten situation.....hope that clears it up for you.  great drug.  not to be used in place of the anti-nausea meds though.  they work differently.

cindy--i am so impressed--couldn't do a mile right now if king kong was after me.  just hurt too much.   i could however, barf on him.

burley

grdnslve-HAHAHAHAHA!  Thank you for the laugh

I take a sleeping pill at night already, but wake up about every hour or so-mostly due to pain and discomfort from the tissue expanders.  I usually don't dream much, but have been having some crazy dreams...

CinD-holy cow, you are my hero!  Exercising?  A mile?  Wow-I have a hard time walking around the grocery store like a normal person.  I have the urge to be hunched over, protecting my "boobs."  I have started doing some stretching, but that's about it.  Thank you for giving me hope, though.  Weird question-did you sweat much?  I don't seem to be sweating in my armpits?

Good luck to all of us lacking in sleep-take whatever you can to get some much needed rest.

Grazie47

grdnslve   I love your Ativan description

writer

HI y'all,

A word of encouragement for those starting out this coming week: I had one of the worse reactions on this forum to my first round of chemo (TCH + Avastin) on 2/8, with a week of really bad intestinal stuff. But everything passes, and that did, too, and now at the end of week two I'm feeling really good, except for an annoying little cold, which I would have had anyway. I walked my normal 4-mile route yesterday, felt great, went to a work event, then went to a party and ate a good dinner and drank wine (CinD, there is conflicting research on drinking, so I'm taking a different tack, but that's just me). Even my metal mouth has subsided a little bit. I know this coming week will be one of feeling good and good energy. So even if you have a hard time, you will bounce back.

The bummer is that all the weight I lost on my Week of Hell came back in a mere 5 days, and I've been eating moderately. Sigh.

My hair's still hanging in there. Some strands coming out but that's always been the case for me. Head's itchy though, so it's coming. The wig depresses the hell out of me, so it's hiding and I don't know if I'll ever wear it. Have hats waiting.

Good luck to those heading in this week. You can do it! 

ennayttap44

Have been keeping up with many of you in chat.

 Now on day 12 of first chemo.  Seems like i keep getting worse, not better.  The nausea is now mild.  I am on my 3rd drug for that.  I was given sleeping pills to counteract the cortisone, but not soon enough.  Now I am using them as night time pain pills.

 WBC was so slow that I started nupagin on Wed.  Fri labs were .8 WBC.  Next labs will be monday.  Since starting the shots I have a headache that won't quit. I am now one month past surgery and still have irriation but no pain from the incision.  There is some swelling which causes a discomfort underarm, but that is minor.  Have lost feeling in toes and fingertips.  Have aches in places I didn't know existed.  Legs seem the worst.  Last week it was chest so had another EKG. Seems the only thing I am good at is sleeping.

 I am no longer even feeling guilty for not showering on a daily basis.

 I did start with an infection - sore throat on thursday and started antibiotics.  Friday couldn't swallow because of it so got IV fluids with my daily injection.

 I'm glad to hear so many are doing well.  I feel like I have the dark rain cloud over my head.  I bet that means when the time comes, my rainbow will be the brightest!

grdnslve

ennayttapp44----the leg pain is from the neupogen--causes bone pain.  means it's working to make those little blood cells.

writer---love ya, but 4 miles--bite me-don't think i could have done that before all this!--my brother keeps yapping at me to get a Wii, but thinking the only wee i'm doing is from all the water drinking. 

hubby got me a big supply of flavored water & it is going down much easier..feel better this afternoon.

ginadmc

Leta17 - I'm new to this group and starting chemo 2/26 with apprehension. I was heartened to read your post! I going to drink water until I float and keep exercising. My regimen will be 4 rounds AC, every other week and then T, weekly for 12 weeks. I'll be getting the Neulasta shot the day after each AC treatment. I'm very worried about side effect management and working full time. IIve got my wig ready and am getting my hair buzzed the day before my 2nd treatment so I don't have to deal with the shedding. Thanks for lifting my spirits with your experience!

mofend

Well, day eleven after my first treament and I feel guilty saying that I feel pretty normal.  My thrush is gone (yukky mouth rinse stuff they prescribe), but very manageable.  Been able to eat regularly - anything starchy tastes kind of funny, but other than that, doing fine on the food front.  No hair loss yet, but I've been cutting it about an inch a day and if it doesn't fall out soon, I'm going to be bald anyway!  Figured I'd ease myself into it - so funny because I've always been super particular about my haircuts with great stylists, but now I just line it up at the bottom and cut away - kind of freeing, I must say.  And a lot cheaper!!!  Welcome to all the newcomers.  If you're lining up for your first treatment this week, good luck - make sure you do not leave the treatment without a prescription for Zofran - from everything I've read that various people have gone through, that seems to be the key.  It was prescribed to me prior to my first treatment and given in my IV, and then I was told to take it for two days afterwards whether I felt nauseous or not and I can say I didn't experience a second of nausea at all.  Have a great weeks, ladies!  February is almost over.  Mo

christine66

Hello again  Just wanted to let you know that my 1st round of chemo on the 4th Feb has gone much better that I though! I can't believe that I am feeling so well. I almost feel guilty when I read that some of you are having such a bad time. My worst day was day 5, I went back to work but needed to leave early and went home and slept for 2 hours. Not sure if I was just overwhelmed with the though of going back to work after being on sick leave for 4 weeks to recover from 2 surgeries or was just the chemo drugs? My 2nd treatment will be this Thurs 25th Feb. I am really hoping that all will go as smoothly as the last? Can anyone give me any insite of what to expect? Will I feel any differently than the last? My hair is finally falling out in masses now.  I think I have really had my head in the sand with this side effect. Because I have been feeling so damn well, I thought that maybe this wouldn't happen - well I didn't want it to happen. I have made myself some trendy bandana type hats and have started to wear them to work today to stop the hair falling on my shoulders. But I think I will just shave it all off tonight! less mess and can just get over the whole losing hair thing!   look forward to reading more of your posts girls! thanks for the support....you are all fabulous   XXX

me2u

thanks grace, took a .5g of ativan and had a couple of sleep, really helps me to cope during the day. hi michele, the feeling of steriod wearing off is great isnt it! i was able to sleep today on my own without any pill. hi leta17, i will follow your regular snacking during the IV, hope it will keeps me away from nausea too hi cindy, i craved in and took the pill, glad i did and now i am off. thanks for your advice.

wow, writer, am really inspired by your exercise regime, i better start moving my butt. hi ennayttap44, you will feel better and yes, your rainbow will be the greatest! hi ginadmc, my treatment is same as yours, we'll pull through this together!!! thumbs up Mo on your thrush. hi hi christine66, not even going to talk about hair, i am so over it...

finally yes, february is ending soon, hang on!!