anyone starting chemo in Nov 2005

kim825

Hey November buddies, sorry I've been MIA and am now catching up with all the threads. Welcome to all the November buddies I haven't welcomed yet. I bet everyone who had their first treatment under the belt feel a little better that something has started. I have my 2nd Taxatere on Tuesday. I am hoping Thanksgiving won't be too bad. From the first treatment it was days 5-8 that were the worst. The hair started to come out last Wednesday. I didn't even make it to Thanksgiving. That was VERY emotional. I didn't think it would be, but it was. My girlfriend gave me a short cut and tomorrow it is being buzzed. Right now it is coming out slowly (I have a lot of short hair)but it is annoying. So I am taking control and having it done. I bought a wig, not so thrilled with it. Still shopping around. I bought lots of hats and love the baseball cap. So many people have been making me hats. I am ready to take on this second step.

Hi Sidney, that was very sweet of you to write us.

hugs,
Kim

mrsz0619

Hi there, Sidney, This must be the honor roll student. how nice of you to pop in and say hi. you must be a great help to your mom, with the twins, and being so brave to come online here, shows you are very interested in your mom's journey. we are all here going through many of the same things, and having our kids interested is a great thing. keep up the good work, sidney, your mom needs you now. She is holding up very well.

I have read from some of you, that you went and got a WBC booster shot of some kind after chemo. I havent had this, or heard of this. Is it the neulasta? While I was having my herceptin/navelbine treatment before surgery, my red blood cells dropped, and i had to have an aranesp shop every 3rd week, but not a special trip into the hospital for it, just on a regular chemo day. I have heard the neulasta causes a lot of bone pain, as it forces bone marrow to produce.

Today is my 4th day post chemo, so i am off the zofran and decadron. just have to use the companzine as needed now for the next few days. i feel fine, and am continuing on the water water water. I am wondering if stopping the decadron, (steroid) will cause any mood swings today. hopefully not. I seem to be pretty level headed anyway, and dont have trouble adjusting to things.i do have some errands to do today, with my mom, and hopefully will be near to a bathroom, the one side effect i have noticed, is no tolerance to wait, when the urge comes. probably a lot to do with the water consumption, but also i think the tissue area is weakened. ugh.... hang in there ladies....LynnZ

kim825

Hey Lynn, I have the neulasta shot 24 hours after chemo. As it was explained to me, the Taxatere lowers WBC counts and the neulasta counters that. Thankfully my insurance covers the shot (except, of course, the co-pay) and my SIL is a RN and gives it to me. I did have some muscle pain after the first one. I didn't know if it was a side effect from the Taxatere or from the neulasta. It went away after 3 days for me. Have fun shopping and DRINK, DRINK, DRINK. Hopefully you won't be too far away from the closest bathroom.
hugs,
Kim

Msklapkin

Hi Lynn,
yes, I get Neulasta shot the day after my A/C chemo. I have been a little achy but not too much pain. My WBC got very low, so for 2nd round I am on prophylactic antibiotics for a week to help incase an infection tries to get me.
I am a bit more nauseous form 2nd round but 1/2 way there- I can make it!! then on to Taxol.
Best of luck
Love and Light
Susan

mrsz0619

Hi there, i was wondering if the 2nd treatment would be a little more symptomatic. I have felt really good, taking my pills, and doing what i am supposed to do. I guess it builds up in your system, and makes each treatment a little worse. I am so glad i get to skip the taxol. My doctor feels that all the pre surgery chemo i had, i can avoid the toxin in the taxol. that will get my radiation treatment started sooner, then the mastectomy and recon can be sooner too. goodluck with the holidays everyone. lynnz

Graycie

Lynn,
Lucky you, I bet you are happy you can skip the taxol...I found that chemo #1 on AC was the worse. Chemo #2 and #3 were easier accept for the constipation....not sure about #4 yet that is next week.

LizM

Hi ladies, Had my appointment with oncologist today and will be starting AC next Mon the 28th. My treatment will be 4 X AC every 2 wks followed by 4 X taxol every 2 wks and then tomoxifen followed by an arimatose inhibator. He gave me 3 prescriptions for meds for nausea and a prescription for neulasta. He also said that either my husband or myself could give the neulasta shot at home so that I didn't have to come in for it. Has anyone on here been giving their own shot? He also told me to get a flu shot before I start treatment. Have any of you gotten a flu shot? I also saw my plastic surgeon and they injected more saline into my temporary implants. It was my last injection until after treatment. I'm bigger and perkier than before (got to find the silver lining in something). It was a busy day but I'm glad I am moving forward with my treatment. Reading all your tips for chemo has been very helpful as I try to prepare myself.

lana17775

Hi Liz-
I start my chemo on Monday as well! Also 4 AC and 4 Taxol, dose dense -- we'll be on exactly the same schedule -- it will be nice to have someone to compare notes with! I'm triple negative, so won't have the benefit of Tamoxifen or Herceptin. Thank God for chemo -- never thought I'd hear myself say that!!
I have my learning session on Wednesday and will probably get my prescriptions then. I will be having neulasta shots as well, but don't know yet when I'll get them -- I'm hoping I don't have to go back the next day for it. My Oncologist said I'd need a flu shot as well.
The women in this thread are great and I really appreciate all they've shared in terms of their treatments and personal lives!
A day at a time!
Chins up!!
Lana

kim825

Hey Lana, I bet you are happy to see a plan in motion and you are moving forward. I did have the flu shot before starting treatment. I also should have seen the dentist for a check up cleaning. (got that idea from these boards). See if you dentist can fit you in before Monday, tell him the situation, I bet they can fit you in. My SIL give me my neulasta shot 24 hours after chemo. She is an RN, but I was also told my husband can give it to me so I didn't have to go back in. My neighbors sister gives it to another sister.
hugs,
Kim

kim825

Leaving in 5 minutes for 2nd session of Taxatere. I feel good getting this next treatment going. See you all later.

Kim

WandaG

One day out from chemo #2 and so far this one was easier than #1. Slept all day yesterday and have felt ok today just a little weak and tired. Got my neulasta shot today. Nurse said yesterday my WBC was good and the neulasta is doing its job. The hair started to come out yesterday and today its really coming out. Guess I'll have to get a new do for Thanksgiving.

Twingle99 you asked where Maryville Tn is. It's about 15 miles from Knoxville and 35 miles from Pigeon Forge and Gatlingburg. We're at the Foothills of the Smoky Mountains.

Nancy-SanDiego

Liz, perky is good. So many starts and second treatments. Sounds like it is going well for everyone. Anyone bothered by swollen ankles? Mood swings? Wanda, that sure is beautiful country you live in. Spent a week in Gatlingburg some years ago and still have a hammered copper bowl to remind me of the country and the people.

Nancy

cojadeb

Hello All,
Sorry I haven't been around the last couple of weeks. Started back up with my chemo (AT) last Monday the 14th, it has been for the most part uneventful, almost seems even easier this second time around. Thought I was going to slide by without any bone pain from the Neulasta but it decided to sneak up on me the other day. My oncologist cut back my decodron this time and I only have to take one the day before and one the day of, when I asked why they said too many people were complaining of lack of sleep and this dose seemed to be doing the job. So far it has worked for me and it also cut back on the length of constipation only 2 days instead of 5. My taste buds seem to be hanging in there somewhat but am still not so thrilled with food. I have never been nausuous only slightly queasy on day 2 but I take anzamet for 3 days after and it seems to do the trick. The numbness in my toes seems to be a little worse this time around but it comes and goes. My mind seems to be pretty normal this time and don't have the "fuzziness" I had last time. Still haven't been able to pin my oncologist down on how many treatments but I am thinking right around 12 from the amount of prescriptions and the fact he just keeps saying I told you to plan on a year. April will be a year, I was diagnosed March 11th. I am still working all of my usual hours, probably too many but I refuse to give this disease any more of my life than it has already taken. No tingling of the scalp yet (yes, sorry ladies it is a sign) but I figure it will start to go around day 15 which is what it did last time. I have told myself its just hair and I have only had this hair a couple of months so I shouldn't even be all that attached to it, that didn't work so well so I know I will cry this time as much as I cried last time and then I will say "Screw it" suck it up and remind myself that losing my hair for a year is better than losing my life. I finally got up the nerve to tell my children that I was stage 3, they took it pretty well and my oldest who is 16 said "doesn't matter, you will still beat it" Have I mentioned how incredible my kids have been and what a great support they are.
Welcome to all who have joined us. Wendy, where in Kansas are you?
Have a wonderful Thanksgiving ladies, we all deserve it.

mrsz0619

Good morning ladies, and Happy Thanksgiving Eve!!! I am a week out of 1st AC. Pretty easy I guess. I did the decadron and zofran for 3 days, now just the companzine as needed. I use it every 6 hrs or so. I dont want to get nauseous, so I am erring on the side of precaution! I didnt notice any 'down' mood due to stopping the decadron, that the doctor warned about. Anyone else have that? It is a steroid, and I suppose could cause mood swings. I only used for 4 days. I have been very tired, and i notice my eyes being difficult to focus. I dont wear glasses or contact lenses, but my eyes feel like i have to squint or rub them all the time. and driving makes me a little nervous because of this. Has anyone noticed that? weird stuff, huh, all these possible side effects. I do seem to be craving bread type things. I have always been a carb person, and not surprised. I guess it is like comfort food. My sister brought me some meatball leftovers from a church dinner, and a big bag of italian bread slices. i ate nearly the entire bag in 2 days!! I wasnt in the mood for anything else.

Have a wonderful holiday everyone. who is cooking?? I am, with the help of mom and my sister, for a small group. Be good to yourselves. hugs, prayers LynnZ

Graycie

Lynn, Just to let you know I have been having trouble with my eyes too.....I notice I am having trouble reading. Hopefully it is just a side effect from the chemo or the drugs...Somedays are better than others....Graycie

AnnaM

May I join this group? I started chemo on October 31st, but am on a 3-week cycle, so many of you are already ahead of me. Am I too late?

Anna

LizM

Welcome Anna, sounds like you live in my area since you had your surgery in Baltimore. Where in Virginia do you live? Are you having your treatments in Baltimore also or closer to home? I live in Columbia, MD and am being treated at Johns Hopkins. I was diagnosed in Sep, had my surgery in Oct and start my chemo next Monday. Welcome to the group.

AnnaM

Thank you, Liz. I noticed you have all introduced yourselves, so I will do the same. I live in Northern Virginia (Leesburg) and was diagnosed with what was thought to be multifocal, high-comedo DCIS in one breast on June 15th after a surgical biopsy. I decided on a mastectomy, because my BS and a second BS told me it was the smart thing to do. My BS had me have an MRI on the second breast, since the mammograms were always difficult to read on that side, too, and they found numerous iffy areas, so I had an MRI guided biopsy, which turned up multifocal DCIS, non-comedo this time. I came to terms with the notion of having a bilateral mastectomy and had that done at Mercy in Baltimore on September 14th. I had an immediate DIEP flap reconstruction on both sides. The surgery went well. The sentinel node biopsy showed nine negative out of nine nodes taken on the second side, but two positive out of two nodes on the first side. I am HER2+++, so my chemo will be 4 rounds of A/C at 3-week intervals, followed by 12 rounds of weekly Taxol/Herceptin, followed by 42 weeks of Herceptin alone, weekly. I don't quite understand my estrogen/progesterone status, as it seems to be different on each side (negative on the right, positive on the left); my oncologist said we will decide on that later, after the chemo.

I had my second round of A/C this past Monday. I take Emend on days 1, 2 and 3 of the chemo. My drip also contains Aloxi and Decadron. I have Ativan and Compazine to take at home, but have only ever used the Compazine up to now. With the first round of chemo I felt a little woozy and light-headed on days 3 through 5, but okay other than that. This time I feel okay up to now (day 3), but am very very weepy and fragile feeling. I'm not sure what that's about, but suspect it might have something to do with the holiday coming up.

My daughter is abroad all this year (she will be coming for a visit for Christmas) and we had planned to spend part of her year abroad together; all that got nixed by my diagnosis, of course. It looks like I won't be able to visit her over there at all.

Happy Thanksgiving to all my new friends,

Anna

LizM

Hi Anna, my daughter is also abroad. She lives in London. Her husband is from Wales. She came home for my surgery and they both will be home at Christmas. I'm a little confused. You said you were diagnosed with DCIS which is noninvasive. I did not think you could have positive nodes with DCIS? They normally don't even do the sentinel node biopsy with DCIS. Did your final pathology show invasive along with DCIS? 20% of my tumor was DCIS but the tumor was invasive ductal and lobular, 2.1 cm, grade 1 with one pos node, ER/PR +, Her2- by FISH test.

Hope you have an enjoyable Thanksgiving!

AnnaM

Sorry, I was originally diagnosed with DCIS and went into the mastectomy thinking that's what it was. Both breast surgeons said they recommended the sentinel node biopsy just in case, which turned out to be a good thing. Those two nodes were positive, but still the pathology report showed no microinvasions in the breast tissue. My BS sent me to see an oncologist, who recommended chemo based solely on the positive nodes. A second oncologist recommended the same. My BS, who was still scratching his head, told the lab to go back and check the tissue again. On the third check they found a 1 millimeter focus of infiltrating ductal carcinoma in the one breast with the positive nodes. If I hadn't had the SNB we never would have known and I wouldn't have had the chemo. I guess I am very lucky to be getting the chemo. I almost missed out on it.

Anna

kim825

Wishing all my November friends a Happy Thanksgiving. I do get the blurried vision also. Noticed that right after treatment and then slowly got better. I am day 2 out of 2nd treatment and feeling ok. Not cooking today, but did make a few side dishes for my sister house. Have a wonderful day.

hugs,
Kim

AnnaM

There's another November chemo thread from last year that has been bumped up and it's confusing. I guess we'll just always have to make sure we're looking at the 2005 group.

Anna

mrsz0619

Happy Thanksgiving Everyone. Welcome to Anna. I had a great day today. I felt wonderful. A week ago today, was my first AC. I am on the 3 week cycle, too, Anna, also Her2 positive. And will do Herceptin again. I already had Herceptin before my surgery in a clinical trial. I have decided, like you on a bilateral mastectomy, based on DCIS in the margin of my quadrantectomy, after my cycles of chemo and radiation. Well, after a week, I have no nausea, really didnt at all anyways, because of the zofran, decadron, and companzine. The blurry vision thing seems to have cleared up yesterday or today. I noticed being able to focus good again!!! i was very tired yesterday, getting the house cleaned for today, and standing to iron tablecloth and napkins, wore me out. I took a 3 hr nap in the afternoon. Today I got up early, (8am) and got things going, I only had 4 for dinner, but total of 17 for dessert and visiting, with cousins etc. i wasnt worn out or anything, and i totally expected to be. Since the doctor told me days 7-10, my blood levels would be at the lowest. maybe the energy of the day kept me going. i will probably crash tomorrow for the whole weekend!

I am thankful this year, more than other years i think. As funny as that seems to me. I have the greatest spiritual connection of my life, now to Jesus Christ. My relationship with Him, has strenghtened since my diagnosis. I have wonderful family and friends, a great support network. Skilled physicians and technicians doing there best for me, and fabulous medications to beat this horrible thing, and suffer as few side effects as possible. Hang in there everyone, Count your blessings, and enjoy the weekend. Hugs, prayers, LynnZ

spirit3kd

Hope you all had a great Thanksgiving Day....I just stayed home and rested, my Son lives 75 miles away and my shoulder is still killing me from the portacath...so decided to stay home to be on the safe side, and not drive that distance alone.

Glad to hear you are all doing so well with the chemo. I see a couple of you start on Monday. I start Tuesday...I am still nervous about this and will be glad when the day is over with.

Counting down and only four days to go......

Kaye

grace05

Hey Gang,

Kaye sounds like you are playing it safe to stay at home during the healing of your port. At the beginning it can be painful but it does get much better.

Well Thanksgiving is over but I count it a Blessing because it went well, hubby and I drove 100 miles one way to my in-laws and I felt good, energy was up DID NOT require sleep, no complaints took compazine tablets just in case because I did enjoy the turkey and southern cornbread dressing with all the fixings that my mother in-law prepared. In addition to family, friends, granadchildren loads of laughter and much prayer. I thank God for bringing me this far by faith. And LynnZ I too focus and give Him more time and is very thankful for learning to wait, be patient,caring for people, and allowing genuine people to be apart of this journey especially who are praying with me.

Hope everyone had a great Thanksgiving. I looking forward to Christmas I have put all my Chritmas decoration up by myself which includes a 10ft tree and many lights on the insidel

B L E S S I N G S!
((((((((Prayers)))))(((((((((HUGS))))))))))))
Grace

LizM

Kaye, I am one who starts on Monday and I am also very nervous. I am more nervous about starting chemo than I was for my bi-lateral mastectomy. I had a nice Thanksgiving with the family. I also decorated today and have been trying to get some Christmas shopping and wrapping done because I just don't know how I am going to feel.

lana17775

Liz and Kaye-
I thought I would be starting Monday, but my oncologist is at a different location on Monday's so I'll be starting Tuesday instead. Sometimes I feel scared as well, just because everyone handles chemo so differently, don't know what to expect! Just want to get things rolling!
I'm more angry than afraid -- I think because this is so out of my control! I'm trying to focus on the things I do have control over....there are choices to be made, but so few!
I think the most important choice I can make after oncologist selection, is the choice to be positive about this whole thing -- I know there's a message in all of this somewhere and I'm hoping that at some point, I'll know what it is!
In the meantime, I've stocked up on popsicles, flavored water, lowfat treats, Immodium, senekot (just in case!), biotene, etc; got my wig and have ordered lots of head coverings from TLCdirect.org (a good reasonably priced site). I live in RI, and this morning it was 17 degrees when I was out walking with the dog -- needs lots of warm hats!!
The other thing I've chosen to take control over is my hair -- having it shaved 10 days after my first treatment by my long time wonderful hairdresser -- she will also make any wig adjustments, trims it needs!

To the rest of you wonderful ladies that have already started your treatments -- Thank you! You're all a wonderful source of inspiration and information!
Anybody got any ideas about choices we can make and feel positive about (forgot to say that I have a wonderful supportive group of family and friends that I am ssooooo grateful for!), please post it!
Chins Up!!
Lana

MegKC410

Hi everyone...

I'm day 10 from my first A/C, and am surprised I am doing as well as I am. I too took Compazine and Decadron around the clock the first 3 days after chemo, and that kept the nausea away, but very tired. Day 5 my mouth started getting sore, so I do Biotene mouthwashes, got some Magic Mouthwash from my oncologist, and so far so good...just feels like I've burned my mouth. Also having some loose stools, and broke out with hives on my back, but doing ok. I give myself daily Leukine injections to build my WBC's back up, and YES, it causes bone pain. I get it mid-sternal, in my shoulder blades and back. Intense pain, but I've learned to control it with around the clock Tylenol and additional Aleve. I had lab done yesterday, and my blood work was essentially normal, so the Leukine is working! I ate too much on Thanksgiving,and paid for it that evening, so am learning to eat in small amounts, since my stomach hurts off and on. Great to hear all your news and tips...this discussion board has been so helpful to me. I don't write as well as some of you, but wanted to add my input on especially the Leukine injections and how to handle the bone pain. I do these injections since I'm doing dose dense A/C, every 2 weeks rather than every 3 as usual. I'm just glad to be started, and tackling this head on! Hang in there everyone!!

spirit3kd

GRACE~ glad to hear that the port area does get better. I was beginning to believe that I would have to live with this uncomfortable feeling for a very long time.

LIZ M ~ glad you had a good Thanksgiving. I will say a prayer for you on Monday that all goes well. I know that feeling of nervousness.....I just can't wait to get that 1st day over with.

LANA~ Thanks for that website, I haven't bought much yet. I found two scarves at a thrift store, but haven't bought a wig yet. You start the same day as me!! I start at 9:30am they said it was a three hour appointment! Be glad when this is over with. I will be thinking of you...and sending a prayer your way. If things go well I will post Tuesday evening.

Kaye

AnnaM

Kaye, LizM and Lana: I am on day 6 of my second round of A/C and feel fine. I was very very anxious about the first treatment. This is how it went:

I took my pill one hour before (Emend, anti-nausea) and used Lidocaine cream on my port area (I got the port a week before the chemo started because I had node dissections on both arms and "difficult" veins).

I went in and got weighed and my BP taken. Then they took us back to the chemo suite (my husband was with me). The thing I had most feared, the sticking of the needle in the port, went absolutely fine. I looked away and it was done. The nurse flushed the port and took some blood. We talked while we waited for the blood test results to come back. The nurse explained the results to me and said I would get them each time. Then he administered Aloxi (anti-nausea) and Decadron (steroid). Then he did the Adriamycin push (red drug) and I sucked on three popsicles to keep my mouth cold. That took about 20 minutes. Then he hooked up the Cytoxin and that took about 90 minutes. I was able to get up and go to the bathroom during the that time; I just wheeled my stand with me. My pee was red, then orange throughout the day and a little into day 2. My husband and I talked with the nurse and I looked at a beautiful art book that was in the room. I snacked a little on some fritos they had (it was Hallowe'en and they had quite a bit of food out in the hall) and drank almost all of my 2 one-liter bottles of water during the visit.

My only side effects from the first chemo were lightheadedness and a little wooziness on days 4 through 6, but I took Compazine for that. I had to take two more Emend pills, one on day 2, one on day 3. They had sent me home with some Ativan as well in case the Compazine was not enough, but I never needed that.

My second round this past Monday went pretty much the same as the first, but this time the nurse didn't seem quite as confident and that affected me somewhat. I have heard that one can ask for the same chemo nurse each time, and I will ask my oncologist about that. I have had fewer effects from the chemo itself and have not taken any Compazine yet. I do have what feels like a bad cold coming on and am worried about that. My blood counts were very low, but since I am on the three-week schedule I do not get the automatic shots they give to boost your blood counts when you do the dose dense chemo. I will be seeing the oncologist next week and I guess she will decide if I need help. I am pretty tired, but feel okay otherwise. I have much less of an appetite than normal, but I can eat without feeling sick.

None of this is as bad as I thought it would be. I am a little weepy at times, but I think that has something to do with my being tired.

As for the hair: I cut mine very short just before I started chemo, then down to velcro length around day 10. I was adamant about not wanting to see a pillow full of hair at any point. Around the third week after my first round I felt a whole lot of tingling on my scalp and had my husband shave my head with his electric shaver as close to the surface as it would go, and that's pretty much what I have now. I have a wig and wear that every now and then. I like to go out with a soft cotton cap (the American Cancer Society's TLC sells them as "lovies") topped with a baseball cap. Around the house I wear an incredibly soft LLBean fleece cap. I like to sleep in that as well. It's surprising how cold a bare head can get.

You might get some constipation with the anti nausea meds. Stool softeners work, but I find them a little upsetting. I eat three or four prunes whenever I feel constipated, and that seems to work quite gently. Prune juice does the same.

I hope it helps to hear from someone who went into her first chemo round as a great big wimp, but found it very very manageable.

Anna