Starting chemo Sept 05

carolrn · September 2005

I guess I'm still on my decadron high also, just wanting to chat.I know what you mean about biting your husbands head off and then feeling quilty but I really do think they understand and cut us some slack. i mean we do have the bc card to play.and it pretty much trumps everything although I know we don't want to abuse it. I guess what I'm saying is go easy with yourself and realize that you are dealing with a lot of s***.

carolrn · September 2005

Susan I feel like you. surely there is some resource out there for aussiemom. anyone good at research? maybe contact the drug company that makes it and see if they don't need an australian in a trial study.

susan_02143 · September 2005

Quote:

I decided last night to get on my horse and ride. I have not ridden her since July >snip< We only rode lightly in the arena for about 20 minutes, but it felt wonderful to have some sense of normalcy. I promised her (and myself) that I will not let this get the best of me...and if I have some good days during treatment, I'll be back up on her...I hope I do!

Janet,

This posting lifted my heart! How wonderful that you could do this thing that you love. Thank you so much for sharing this story.

*susan*
a decadron inspired posting

susan_02143 · September 2005

Have we heard from ski lately? Last I recall she was going for a consultation at Dana Farber.

*susan*
a decadron inspired posting

carolrn · September 2005

hi monique, hope you are well this day. Susan is right about bringing some one with you or a tape recorder to help remember all that is said. I am a nurse and use to some of the jargon and still it was overwhelming so I was glad hubby was there to help ask questions and remember. Hope every thing goes well and please keep us posted andask questions. remember there are no stupid questions

Pegk · September 2005

Susan,
You're amazing! the day after treatment and you complain that you can't keep everyone straight, then you proceed to give everyone great advice!
I'll vote you president of our reluctant club, then give a warm welcome to our newcomers, Carol, Monique, AussieMum.
I've just recovered from a 3 day dull head ache, which I think is not chemo, but hormonal in origin- that damn period. I'm feeling much better today and am looking forward to a good weekend before tx#3 next Tuesday. I'm going to Maryland with my family to visit my mother and sister
I'm going with stern warnings from my doctor, because my wbc is low. No excessive kissing and hugging, but I really feel good and some Mom time is definitely needed.
I'll be bringing my wigs and an assortment of caps and scarves to have a "Peggy Head" fashion show for my nieces.
Best to everyone
Peggy

tornadogirl · September 2005

Skibug and I are e-mailing to help us get thru this. Her last e-mail she was starting to lose her hair but otherwise OK. She started chemo on the 8th i believe, a week or so before me.

She has her second treatment today.

I will have to ask her about her Dana Faber trip, or maybe she will come back and share here.

I dont know what i would do if I did not have you gals to help me thru this!

Thank you all!

susan_02143 · September 2005

Barb,

Good to hear she hasn't fallen off the face of the earth. Do let her know that we all care about how she is doing, and hope that when she has the energy to post, she will. You are a good friend!

*susan*
a decadron inspired posting

susan_02143 · September 2005

Quote:

I'll vote you president of our reluctant club

But your name will always be the first posting. Can't change that!

Quote:

I'm going to Maryland with my family to visit my mother and sister.I'm going with stern warnings from my doctor, because my wbc is low. No excessive kissing and hugging, but I really feel good and some Mom time is definitely needed.

I understand the kissing, but hugs? How would I get through all of this without the warmth of hugs? Are you taking masks in case someone gets the sniffles? I am considering having some on hand for visitors just in case.

Have a wonderful time with your family. I agree, spending time with those that we love is a great comfort. [I snuck out to Western Mass to see my daughter last week. A bicycle delivery as the front.]

Safe trip, and we will look forward to your stories.

All the best,

*susan*
a decadron inspired posting

txred9876 · September 2005

Susan....

Well lets see....masks...maybe I should wait until the hair falls out...my other half said..I will shave mine tooo! wouldnt that be a picture....masks and baldness..LOL

I do not think my counts are to low for another treatment they just want to make sure I do not get sick and have them fall further.

They gave my daughter antibiotics today (they are not sure if viral or bacterial). (not sure if i posted this already..short term memory is the FIRST to go on chemo brain!)

Tina

susan_02143 · September 2005

Tina,

Now that is a family portrait for the ages! I smell a holiday card in the making. ;-)

*susan*
a decadron inspired posting

monkey9cats · September 2005

Good evening ladies!!! I was just reading the earlier posts and I think I have to agree with Peggy about Susan:

I'll vote you president of our reluctant club

Susan - It sounds like you're feeling a bit better. It's amazing what that decatron does to you!!! Up and down really fast!!! How are you feeling tonight?

Well I have a question....it's been 1 week today since my 1st treatment. My heads starting to itch a bit. Is that a sign that my time is coming??? "Hair Today...Gone Tomorrow"???? I was talking to a lady the other night at the ACS Look Good class and she said she lost hers in a week. Maybe I should stuff a bandana in my purse just in case it happens while I'm at work???

Boy this trying to stay away from germs isn't the easiest thing in the world. If someone at work sneezes I freak! I was outside last night and a mosquito bit my on my "port" and I freaked again!!! When my daughter comes down in a week or so she wants to go to Disney World but I told her I'm not suppose to be around crowds but I'd check with the Doctor. Tomorrow I have to go get blood drawn to check my WBC's. Hopefully I won't have to go back in for another Neulasta shot but I will if I have to.

I vacumned tonight (because it was driving me crazy) and it really pooped me out after working all day. I almost worked a full week this time. I don't work on Fridays (yeah) and thats one of the reasons I decided to get my Chemo on Thursdays so I'd have an extra day or so to get feeling better.

Everyone have a great evening and please take care......

Cheryl

susan_02143 · September 2005

Quote:

Susan - It sounds like you're feeling a bit better. It's amazing what that decatron does to you!!! Up and down really fast!!! How are you feeling tonight?

I am feeling much better, thank you. The first nine hours were not good, but now that I understand why, we can fix this next time. I am back to my regular state of an 8, on the susan-chemo scale of 0-10. What a relief.

Today, after my neulasta shot, I had my ultrasound to check ovaries and kidneys due to the unexpected periods, and they found nothing wrong. More to celebrate!!!!

Quote:

it's been 1 week today since my 1st treatment. My heads starting to itch a bit. Is that a sign that my time is coming??? "Hair Today...Gone Tomorrow"????

The tingling/itching happened to me. Made me aware that the chemo was working. It was at least another week before the hair began to loosen. As you know, I went for a buzz cut [very military] before the real fallout began. If having a banana in your pocket makes you feel better, do it, but I don't believe that your hair will fall out that fast. You will have plenty of warning.

Quote:

When my daughter comes down in a week or so she wants to go to Disney World but I told her I'm not suppose to be around crowds but I'd check with the Doctor.

With the Neulasta shot you should be able to manage crowds. Do ask your doctor. If this would make your daughter happy, it seems worth the ask. At Disney they will give you a wheelchair or motorized vehicle if you are worried about getting tired.

I am so impressed that you worked a full week. Now we just need to find a way to get you some real food! Can you tell that food is one of my greatest pleasures?

Take care yourself,

*susan*
a decadron inspired posting

Pegk · September 2005

I came across this web site today that I thought would be of interest.

http://www.baldisbeautiful.org/

susan_02143 · September 2005

Peg,

I have never looked like that and being bald doesn't get me any closer! Loved the links to gildasclub.org. Thanks!

*susan*
a decadron inspired posting

marg1 · September 2005

Hello ladies, Marg here.

Susan, update us on how you are feeling after round 2. I laughed so hard when you made that lesbian comment. Not that there is anything wrong with that!!! You killed me --thanks for the laugh.

Glenda, I am new to this group too. Welcome I guess.

CD -- Congrats on the new kitten. They are so darn cute. Something cute to play with for now. I told my 5 and 8 year old daughters that when my hair was to fall out was when we knew "the medicine" was working so it was a great thing. They bought it and tonight we washed my hair together and they clapped when some serious hair started to fall out.

Prayer -- Day 13 after 1st A/C tx. I wash my hair every other day and keep it up in a clip most of the time. I have had some hair loss but you still cant tell. I still have a full set of hair but I do admit that it is coming out more and more each day. How are you doing? LOSER?????
Ha Ha. I did lose most of my pubic hair and come to find that I have stretch marks there. Probably post pregnancy. Yeah I look really cool now. I started work and I afraid to wear my pants -- leaving a trail of pubs towards my office. Leg hair is still thick as tree trunks -- what is the deal!!!!

Horsewoman, I use MURAD product for the zits. I got them about 8 months ago. Never had acne before and I tried Proactive but it never acted like a pro or actived on my face. The Murad seem to help alot. Maybe I will start the Bald trend here in south tx. Viva la Bald Babes!!!!!
Did you have a reoccurence? You sound like you have done this before.

Cheryl. Thanks for the coffe filter tip - I will try it.

Aussiemum-- you should try EVERYTHING in your power to get Herceptin. I have read so many articles on it and they say it is the miracle drug for us Her 2 + woman. Anyone else her2 + in this group?

Well thats all for me know, feeling great. Leave work early. I am an RN, I am the director of nurses for a busy home health agency that cares for the elderly. I have 25 nurses at my disposal. I do get some breaks. I go to Houston for my 2nd AC tx on Oct 3rd. Hope MD Anderson is still around after Huricane Rita gets done with that area.

I pray for us daily -- Marg

prayer · September 2005

To funny. I scratched my head tonight and it came out in handfuls. Having a real hard time with it. But the funny thing is I have not shaved my legs in two weeks thinking it will fall out on it's own and why bother. It was the firs thing I tugged on after I found out my hair was falling out and woulnd't you know it...it seems to be superglued to my legs! Thought there might be one perk! Well Marg I guess I WIN. Damn!

cazza61 · September 2005

Hi all
3rd day after a/c #2 head still fuzzy still feel like im pegnant with morning sickness but did feel like a hamburger today.Hint make sure you eat before u have treatment,I think that is what made me feel sick afterwards.
I havent been able to stop crying since yesterday the tears just flow ,I try hard not to stop and think for too long.
I know we are all going through the same thing,but I dont know if i want to do this,Im having a weak moment I know its only 6 mths out of a lifetime and in the end it will all be worth it,but today i feel like crap.
so sorry to have a moment but I think we all need it now and then
with all my love
carol

prayer · September 2005

cazza I sent you a PM

monkey9cats · September 2005

Good morning all! Sure wish I could sleep in late every now & then. Guess it's just habit of getting up so early for so many years!!

Has anybody had any "food cravings" with the chemo? I haven't stopped eating for the past few days! The other day when I came home from work early I turned the Travel Channel on dozed off and woke up to someone eating a beautiful chocolate cake. Well...I needed chocolate!!! I never eat sweets! Luckily I had some chocolate pudding and that satisfied the craving. Then I dozed off again and woke up to the "Top 10 Fast Food Restaurants". WOW...I needed a corn dog, tacos, and Burger King!!! After my "Look Good" class I thought I would swing by Dairy Queen for a corn dog, Taco Bell for the tacos then Burger King!!!! I decided to just go to Taco Bell and get some soft tacos. I NEVER have any cravings for food!!! I need to go grocery shopping today...hate to imagine what thats going to be like. I am going to buy me a chocolate cake though!!!!

That mosquito that bit me the other nite on my port looks really red and has a "head" on it. I was reading the other nite on the ACS website not to "pop" pimples etc etc. I think when I go in for my bloodwork today I'll have them take a look. Worry worry worry.....

My head still itches but like someone said you know the chemo's doing it's job! I work in an orange grove with a bunch of SUPER SUPER mexicans (I love my people) and they say when you go bald it's called "hair coming loose." That really makes me laugh!

Hope everyone has a great day...I think of everyone all day long!

Cheryl

tinkermax · September 2005

Cheryl

I can completely understand about the cravings.

i usually have a small appetite, but at the moment I want to eat..eat..eat. This is a good thing for me as I am naturally small built, and underweight (its in the genes, all of us are skinny).

I am really fancying meat, potatoes, pies, crisp, ice-cream... I am having a whale of a time as it all tastes delicious...hope it lasts.

I hope everyone who has had treatment this week is coping ok, have a good weekend everyone.

Carol...so sorry you're having a bad time, we all need to have a good cry or vent at times, thats what helps us through this nightmare. You are not alone in feeling like this.

Take care everybody

Maxine

susan_02143 · September 2005

Quote:

Hint make sure you eat before u have treatment,I think that is what made me feel sick afterwards.

Carol, absolutely. My nurses actually encourage us to eat during the treatment. They keep snacks, or you can bring in your own.

Quote:

I havent been able to stop crying since yesterday the tears just flow

{{{{Carol}}}}} a virtual hug to you. I am betting that we have all had these moments. It happens to me if I am alone for too long. As my sister says, "living in your head too much isn't a good place when you are sick." Anytime I am scheduled to be alone for too long, I make sure I have someone stop by for tea or lunch, and that helps tremendously.

But, if that doesn't help, you might consider asking the counselor or social worker at the hospital for a chance to chat. In the States, this is a free service. Of course, I don't know if you have these resources in your country.

At the very least, come here to vent, arrange to meet with one of us in the private chat rooms, reach out and one of us will be there for you.

Here's to a day of balance.

*susan*
a decadron inspired posting

susan_02143 · September 2005

Marg,

Did I ever welcome you properly? If not, consider it done!

Quote:

Susan, update us on how you are feeling after round 2. I laughed so hard when you made that lesbian comment. Not that there is anything wrong with that!!! You killed me --thanks for the laugh.

My sense of humor seems to be intact, if just a little darker than before. :-) Yesterday went very well. Have had a long email discussion with the Nurse Onc [who I adore] and she has apologized for reducing the decadron in the drip! what a sweetie, so next time we will increase.

Quote:

Well thats all for me know, feeling great. Leave work early.

This is marvelous to hear. Remind me of which protocol your are on? My short term memory is gone. I have never felt so dense in my life!

Your spirit is a wonderful addition to the list.

*susan*
a decadron inspired posting

susan_02143 · September 2005

Cheryl,

I for one, am thrilled to hear you talking about real food. [Pass on the fast food, though.] May I make some suggestions based on my assumption that you are craving real food, but might not want to spend a lot of time cooking? Look in the frozen food section and there are now pasta & chicken dinners by Bertoli, or stir fry mixes that you add the meat of your choice, etc. Though I don't eat these, friends who are more like you do, and find them very satisfying.

And then of course, slip through the bakery for that cake! Your spirits seems so much higher than last week, and that is so wonderful to hear!

*susan*
a decadron inspired posting

susan_02143 · September 2005

Maxine,

So good to hear that you too are doing well. I have never had an appetite problem, indeed, my problem has always been more appetite than metabolism!

I am still on this strict two-hour snack routine [very tiring let me tell you] but I really can't manage more than about 2 ounces of food at a time. Go figure!

Enjoy the appetite. I suspect a few extra pounds [or the English equivelent] will help you stay strong.

*susan*
a decadron inspired posting

susan_02143 · September 2005

Prayer,

Superglue? Too funny!

You are clearly not a gracious winner! Complaining about being first. [BIG smile in there.] Are you going to cut it to avoid the fall out, or are you planning an au natural removal system?

*susan*
a decadron inspired posting

marg1 · September 2005

I am 38 hispanic female, mammogram in may 2004 normal found lump june 2005 had mammogram and BINGO. Stage 2B, 2.4 cm left breast, had bit mascectomy (my choice) with immed recon with tissue expanders. ER+, PR+ Her2+ and Sentinel node+ (Can I be anymore positive!!!!!!) 1 out of 18 lymph node positive.
A/C x 4 every 3 weeks, followed by Taxol and Herceptin x 12 weeks then Herceptin every 3 weeks for a year. Treated at MD Anderson in Houston. Due for BRCA gene tesing next month.

My mother now a 6 year breast cancer survivor. My girls (ages 5 and 8) they think that when they grow up they will also get masectomies too. Like it is the norm. Grandma, now mom later us!!!! What is sad is they might .

prayer · September 2005

Marg how great it is that your mom is a survivor. How wonderful for you to have such an example. I am sure it will be the same for you. I often wonder if my little girl or my son will have to have mastectomies as I am the third generation in a row only my mom and grandma did not make it. My kids are 3 and 7. But then I think well 15 years is a long time there will be all kinds of treatments they did not have now, maybe even a vaccine. I will line my kids up first. I take comfort in this as there are all kind of treatments for me today that were not there for my mom 15 years ago.

Susan
I don't know what to do about the hair. I have to say that normally I could care or less wether I win or loose...it's all about playing the game to me. But this just SUCKS! My hair is the one thing about me I have always loved, long, thick and grows fast. I have been very blessed in this department. I really am going to miss it. Might hang on to it as long as I possible can. In fact I might use super glue! LOL

jlpd · September 2005

Hi Gang...just had my first AC treatment yesterday afternoon, everything went fine. Had a little sinus pressure, so the nurse said I should take whatever I take at home and that should help--sudafed. I've been taking all of the nausea medicine faithfully... I think the Promethazine (generic) that you take every 4-6 hourse makes me more 'loopy' than the decadron!! I went to bed around 9 p.m. slept until 11 and woke up with nausea, but ate a couple of saltines and a small sip of water and was fine for the night...when ever I start to feel any quesiness, I grab a couple of crackers and I'm doing better. I keep washing my mouth with baking soda and salt, every 3 - 4 hours or whenever that scummy feeling starts up in my mouth. Hope I don't get any mouth sores...Just took my Avitan, so now I should start feeling a little perkier. I felt great when I came home...like the energizer bunny....today I'm tired, but not too bad. Thanks guys! Now for some icecream!! Janet

tinkermax · September 2005

Prayer

I too lost my mum 15 years ago to breast cancer (mets to liver).

I too believe like you, that medicine has come a long way since then, my mum only had lumpectomy, and rads, no lymph nodes removed, no chemo.

I am fitting this battle with everything I can.

Maxine

Starting chemo Sept 05

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