Jan 2008--Ain't it Great?

sheshe48 · December 2007

Hi Everyone,

I just want to send good thoughts to everyone that is starting chemo cocktail this week. Lj13, D1, Deeat58. I hope I did not leave anyone out. Vattegal I'm so glad you got the drain out. I also was allergic to the tape. I used fungal cream and that helped me most. Thanks KathyL for information about breast inserts, it was on my mind, I'll ask my oncologist tomorrow. I will find out what kind of chemo cocktail I will receive. I'm glad Kimberly you are gettng your range of movement back, hang in there.

Lynn12 · December 2007

Hello Jan. 08 girls,

I'm joining my Jan. 07 sisters in offering you all our love and support. It's so hard to believe it's been a year since we entered the chemo journey!

I had 6 rounds of TC three weeks apart. Started 1/19/07, finished 5/8/07. Like others said, take the anti-nausea. I started out with Compazine, then Zofran, ended up with Emend my last 2 tx. Wish I had it from the beginning, so ask for it if you can! Listen to your body, rest, rest, rest!

Wishing you all the best! You can do it, it'll be done before you know it!

hugs,

Lynn

Determined1 · December 2007

Well, I survived!

It wasn't so bad. Here's the story:

Got to the hospital at 8:15a for my bloodwork (which they kindly ordered by fingerstick). I have a "standing order" for this bloodwork, so I asked the guy what that meant--did I have to bring the paperwork every time, or would it be in the computer? He told me a standing order meant that he has to take my blood while I'm standing. I cracked up (simple, I know, but hey, I was about to get my body pumped full of poison, so any laugh was good). The dh wanted to know what was going on in there, he never hears me laugh when I'm getting bloodwork.

So on to the chemo lounge. Checked in and waited forever while they mixed my cocktail (if I went to a bar that took that long, I'd never go back!). My case nurse came in while I was waiting and brought me a calendar of my chemo events and helped me schedule my appts. I was surprised to learn that I have to get my bloodwork done every week (again, they are accommodating me by doing it via fingerstick). Now in to the CHAIR. (Oh, took a leak first, I drank a gallon of water before 8am this morning and skipped my coffee for two days in a row, just in case it would negate the effect of the water.) I settled in and proceeded to tell my nurse about my needle phobia, which my dh loudly supported. My nurse is an angel. She got some heated towels to put on my arm for about 20 minutes which did the trick. That girl got the IV in right away. Of course I was totally clenched and still see spots before my eyes from that, and have a sore jaw, but the butt muscles were all the better for the 10 minutes in the clenched position! She gave me about 10 minutes to come down from my tightass before starting the drip.

First came the Decadron--took 15 minutes. Then the Anzumet, another 15 minutes. Then a wait for the big guns. While waiting for the pharmacy to mix it up the nurse told me to take colace for the next 5 days to keep my stools soft. Apparently the Anzumet can make you all constipaty (family word, sorry). Now the Taxotere. This can cause allergic reactions for some, but they happen while you're in the chair, so the nurse stuck around for the first 15 minutes of that drip (took an hour all told) to watch me. We chatted about se's and how to handle them, so it was good. I had no problems. Then the Cytoxan. She put the drip for 30 minutes, but explained that some folks get nasty sinus headaches when it goes in that fast, so if I developed one, I was to let her know to slow it down. No prob. I did feel my arm get colder with that one and it seemed to get heavy, but I suspect that was the cumulative effect of pumping so much liquid into my arm. Then she came to take out the IV and before I could work myself into a panic, she was done. I left at 2:45.

Clothes. I wore jeans, a t-shirt, a sweatshirt, heavy socks and sneakers. I thought I'd have to take the sweatshirt off for the IV, but the cuffs are loose enough that we were able to pull up the sleeve and it was fine. The only thing that got cold was my exposed IV arm and I wrapped it in a towel.

What to take. My iPod was my savior (Pink Floyd, Sheryl Crow, Brand New, Fleetwood Mac, Counting Crows--I know, eclectic). Also read the paper and a magazine. Didn't talk much to the dh with the iPod on, but he was reading and playing with his Blackberry. When we did talk, he was trying to remember if we said "in sickness and in health" when we were married by the justice of the peace 25 years ago... He wasn't sure he was compelled to be there to be so BORED.

I'm a little wired (steroids), famished (steroids), and cotton heady (lack of coffee). But okay otherwise. Just waiting for the se's to kick in.

Tomorrow after 2:15 I get my neulasta shot (my friend, Karen, from a Just Diagnosed thread calls it nasty-lasta because of the se's). I understand its bone and joint pain. (Guess it's hard for the body to keep up with all that white blood cell making.) Something to anticipate!

It wasn't so bad. (Talk to me when I have my se's!)

So, Vettegal, good news about the drains! And path report tomorrow. Gosh, I have my fingers crossed that it's good. You must let us know.

And SIS Kimberly, keep stretching those arms! I actually lifted a plate with food on it with my outstretched arm last weekend and didn't wince and it made me happy!

Welcome to our group, deeat58. Sad talk is okay, you're supposed to vent here. Hope you're doing okay. Like me, you're probably watching your body like a hawk waiting for any se's to pop up. I hope it goes okay for you.

And LJ13, yuyubear, DianeB, let us know how you did today. And WVgirl, you got your port today and start chemo tomorrow--what an ending to the year! Hope you're doing well.

Wow, Jewels, long post (and I wrote this once already and lost it #$%^ computer!). Anyway,

Onward through the fog!

D1

Anonymous · December 2007

Back from chemo No 1.

Sheesh. Don't I feel all silly. It was as easy as can be. They dripped in Aloxi and Decadron, I took an Emend orally, they pushed the Adriamycin, followed with some saline, then the Cytoxan.

It went fine.

The anticipation was worse than the experience.

I hope I keep feeling good for the next 3 days. Many people say the effects hit them on the second day after. We'll see. I take another Emend tomorrow, get a Neulasta shot, and then take an Emend Saturday.

I ate some plain crackers and corn puffs during the infusion, drank some water, sucked on some ice during the Cytoxan (nurse said it helps avoid mouth sores), and then came home and had lunch (turkey with swiss on wheat). Everything tastes normal, stomach feels normal, as long as it does I'm eating.

I'm going to hit the treadmill in about a 1/2 hour, see if I can do my normal 1/2 hr evening walk. Some good studies show that regular exercise helps keep side effects at bay (well, ok, not the hair thing, but many of the others like fatigue, nausea, inapetance, etc.).

Hugs to the jewels yet to taste their cocktails. Try not to worry ... the infusion itself isn't bad at all.

Determined1 · December 2007

Oh yeah, LJ13, one down!!! Who are the Chemo Warrior Babes now???!

Glad it went okay. I agree, the anticipation was MUCH worse than the experience. (You hear that Jewels? It's okay.)

Keep us posted on your se's and how you're dealing with them. I know every hint I've learned here has proven to be not only correct, but invaluable.

D1

Anonymous · December 2007

Is there a hint thread??

My only hint was from one of the nurses: keep taking your meds.

KathyL · December 2007

D1 and LJ: Thanks for all the details. It actually sounds do-able! It is sooo comforting to hear your posts. Thank you, thank you, thank you! Please still tell us tomorrow if the SEs kick in and it's crappy, but here's to hoping that part isn't as bad as we all think either

I started looking at hats, scarves, etc. today and am going Monday to look at wigs. Let us know when the hair starts coming out, too.

golfer779 · December 2007

D1 - Great synopsis of your day! Hoping the following hours and days are as good. I was quite surprised to see how many things you had injected. How often do you go in?

I met with the onc today, he is still suggesting CMF. 14 days of pills, and a drip twice a month for only 1 1/2 hours for each visit. This seems kinda tame compared to your meds. Will be quite interested to see if the doc at the Seattle Cancer Center agrees with this plan.

I'd love to ask more, have company for dinner in about an hour so I'll have to talk later, Carol

Donna1955 · December 2007

d1 and lj13

Thank you Thank you Thank you, I feel a little better, I start my ac next thursday (every two weeks x 4) have been real anxious but I do feel better....with both of your reports ( I have a port since my veins are really no good at all)

Donna in Az

Miss_Lolli · December 2007

LJ....there is a "tips for getting through chemotherapy" thread that is amazing. I will try to post a link here, but just in case it doesn't work I bumped it up, and it is now on the first page of the "chemotherapy, before during and after" section I'm almost a month from my last chemo, and I'll just quote a common refrain that is so true....the anticipation and unknown is the hardest part. Good luck!

http://community.breastcancer.org/topic/69/conversation/478386?page=3#idx_64

Anonymous · December 2007

Kathy, I'm glad our posts have helped. If any sfx kick in, I'm ready to kick back. My abdomen felt a little funny before/during/after exercising, so I took an Ativan afterwards. Had a light dinner of cold chicken breast meat, some snow peas, and some ravioli covered with some herbs and that mazola butter/canola oil ( I can't just cut loose with full butter and ignore all the heart-healthy work of the past 20 years ).

Donna, I wasn't nuts about a port, but I have little veins and during the dx process, I've had several techs punch right through both sides of the veins. Was looking pretty battered for a while. The port makes it lots easier on everyone, and you get to put you Lidocaine on the port an hour ahead and cover it with Glad Press n Seal.

I plan to have a bottle of water with me at bed, take 2 Compazine at bedtime and 2 six hours later. That should get me to Emend No. 2. No plans after that, maybe an Ativan. This must sound like overmedication to some, but I am just determined to get through this with as little sickness and sickfeelingness as I can. I've lost 5 lb. over the past month and am hovering at the 100 lb mark. At 5' 5" I don't want to go under 100, and if I'm feeling icky/sicky I just can't eat.

So use the drugs to help you enough to stay well.

Thanks Miss Lolli for the info !

Anonymous · December 2007

Well here it is, a new day has dawned.

I set an alarm so I could take 2 more Compazine at 6 am. Swished it down with some water and tried to go back to sleep. Stayed in bed 'til about 9.

Had some OJ and did 15 minutes on the treadmill. All well.

Took a couple more Compazines at 10-ish. Next the Emend (day 2) at 1.

I have a reddish rash, slightly itchy, on my throat. No fever, no pain, no nausea, no v-word, waiting for the other shoe to drop on my head or something. I barely had one or two off-color pee's, and that was yesterday during/after infusion. I'm drinking just over my normal amount of fluids (usually about 90 oz/day), most of which are clear fluids. I guess that's flushing the stuff out. I was worried about flushing it out too fast, because if I'm going to go through freakin chemo I want the drugs to stay in me long enough to kill the cancer. But everyone says not to worry about that, it won't flush out too fast.

All goes well as of this moment. I'll have some cereal now, then my Emend. Go back for a Neulasta shot this afternoon. I'll ask about the rash then.

If anyone's still nail-biting in anticipation, ask any questions you have, I'm happy to share what I'm going through.

KathyL · December 2007

LJ-- Glad to hear you're doing so well! I so hope it stays that way. My onc keeps saying I should be fine, but I'm not sure I believe him-- maybe I have a glimmer of hope now Smile

. I will be getting decadron for 3 days each time, and Aloxi the day of chemo. I'm allergic to compazine, but I'll have Zofran on hand at home-- I think I'll be taking it as a precaution after reading how well you're doing. Thanks!

deb102307 · December 2007

Wow. I feel a small sigh of relief hearing that it wasn't as bad as I was thinking. Thanks for taking the time out to let us know how everything went and how you are feeling.

D1 - are you still doing ok?

Miss Lolli - thanks for the link. I will definitely be checking that out.

Everyone keeps talking about a variety of meds (not chemo drugs) but I was only given emend to take the morning of and then will get something along with the AC. Is that normal?

wvgirl · December 2007

Hello everyone,

I had my port surgery yesterday. It feels like I have been kicked in the chest by a horse. I was randomized into group 1A for the clinical trial. I will be in the general treatment Doxetal -4 cycles every 21 days then AC 4 cycles every 21 days..surgery then Radiation. I ask to have my 1st chemo treatment changed from Jan 2 to Friday Jan 4 so I will have the weekend to re coop before going back to work on Monday. Hope everyone is doing well...PS how long will it be before the pain from port insert will be ???

Anonymous · December 2007

Deb, I think everyone could sense with me that I was very concerned about the sfx, esp. nausea/vomiting. And those who couldn't sense it, I SAID IT REAL CLEAR LIKE I WAS TALKING TO A 4-YR-OLD. "I don't do well with feeling sick ...." And I told them I always get the side effects of any drug, you name it, I could be the poster child for side effects.

If you're concerned, by all means ask for something extra. The Emend works only on the brain chemicals that trigger vomiting. The other drugs work on different areas (e.g the stomach). And Ativan, which is an anti-anxiety drug, has anti-nausea as a common off-label usage, as well as being somewhat of an apetite stimulant. They can be stacked (taken simultaneously), so each is in you dealing with a different area all at the same time. I also have peppemint and ginger altoids, and dried candied ginger chunks, which are both pretty effective in a mild way.

WIth the Emend, they generally only give a 1-dose for operative anti-nausea. The chemo protocol is a 3-pack, 1 the day of chemo, and 1 each day following. Many ladies seem to get hit by the sfx on the second day after. I'd sure want to have some big guns on hand for that day. Very costly though (4x3-packs = $1600).

Thanks to our sisters and brothers in years past who did the time in trials bringing us these great drugs.

WVgirl, do you mean physical pain from the port, or from the sedatives? The Fentanyl made me yukky feeling for most of the first afternoon, and groggy for a good 36-48 hours. Physically, the port incision and the one on my jugular twanged occasionally for a good week, and my body has had to adjust to the creepy feeling of something being there and up along part of my neck. After 1.5 weeks, I'm pretty used to it. The incision has healed, it still slightly itchy, it's a nice straight scar, and as ports go, it seemed to work fine yesterday during my chemo.

SISKimberly · December 2007

Carol, I can so see that image of you stuck in your closet LOL!!!! Good luck at the oncologist today.

SheShe how are treatments going for you? Weren't your doing chemo/rads before mastectomy?

D1and all of you who started chemo yesterday-Hope all went well.

Been playing phone tag with my oncology office since yesterday regarding when I start chemo.

Wow, there must have been several people adding at the same time I posted...I'm glad to hear chemo has gone well LJ13 and D1, so far.

Have a good day,

Kimberly

Determined1 · December 2007

Still doing okay. But like LJ13, I'm waiting for the other shoe to drop. I got up this morning and headed off to the gym since I was feeling okay. Had them add a note to my file that if I pass out, or something, that the EMT folks were NOT to use my left arm for any blood pressure cuffs, IVs, what have you. I felt better knowing I'd put that in. I don't plan on losing it at the gym, but you never know. I did my usual workout, elliptical, weights, abs, recumbent bike to cool down. Felt great.

Came home to change and went to lunch with the family and actually shopped a bit. Then off to get my neulasta shot. Okay, that was not fun (please bear in mind my fear of needles). That bugger STUNG when it went in. And I could feel the sting for something like an hour and a half afterward. The nurse told me that the se's from that injection should come on w/i 24 hours and would make me feel bone and joint pain. She said if regular doses of max strength tylenol didn't keep it under control that I was to call in. Sounds manageable, but oddly, I'm intimidated by this shot--not sure why. She said the achiness should last about 4 days. During this time, the se's from the chemo itself should start showing up. Frankly, I'm already seeing those. So far I can report a robust appetite (can't seem to eat enough), dry mouth (combating that with Biotene, which really seems to work, whereas high fluid intake doesn't seem to help as much), dry eyes (took out the contacts), and so much gas I can hardly stand myself! And the gas doesn't seem to want to be held in, it just sneaks out like I'm some old person and smells so bad (TMI, I know). I'd better get this under control or my reputation will be forever soiled! I did take one colace last night and plan to take another one tonight as I'm a little concerned about constipation (perhaps this is causing the gas?). I'm not real good with drugs (I usually don't take an aspirin for a headache), but I'm trying here. Other than these, very manageable se's, I feel like usual. Gosh, I hope it stays this way!

Energy seems to be okay. In between my running around I've managed to do 6 loads of laundry--including getting the sheets back on my bed. I'm hoping I'll still be okay in the morning and can get my kid's sheets washed and on before I crap out. I'll let you know.

Carol, glad to hear you got your cocktail. Very different from mine. I don't know if it sounds any easier, but I do believe our heads can help us through. I'm trying to keep mine together! (Was it ever together???) When do you see the guy at the Seattle Cancer Center? Will you do your tx there? Hope they get you going real soon--I hated the wait. The anticipation sucks.

WVgirl--yay! You're on your way. Actually, I'd be a little relieved to get some time to let that port incision heal before you start chemo. I don't have one, so I can't help you with the "what to expect" part of it. But you sound good and that's most of the battle.

Donna1955--you're in the worst part of it--that week before you start. Try to push it to the back of your mind and live as normally as possible over the next week. Exercise, drink excessive amounts of wine, and eat too many Christmas cookies (that was my routine!) to take your mind off of it. The infusion itself wasn't nearly as bad as I'd imagined. I think the fun is to come, but it's okay so far. Really it is.

Deb--I asked about Emend when I was there. My nurse told me exactly what LJ13 said about it working in the brain, while the others work in your disgestive system. She said the stuff I'm on (decadron, Anzumet, with compazine as a backup if needed) is not generally considered as strong as the Emend and if I'm really sick, I should call in and they'll likely give me some of that. So far I haven't felt any nausea. In fact, my appetite is heartier than usual. I take the last of the Anzumet tomorrow and then we'll see how I'm doing. I'm with LJ13, I do not want to be sick when there are so many drugs out there to combat that se. You may want to ask if when you go in for your infusion if they plan to give you any anti-nausea meds then. I got two boosts of the same drugs I'm taking in pill form via my IV. My sister also got Ativan through her port when she did chemo a couple of years ago, but I specifically asked not to have that as it made her really loopy after tx and I figured there must be something else out there. She was UBER anxious, too, so that was probably part of the reason. But do ask what they're going to give you on infusion day--it may be more than just your chemo drugs. Be your own advocate. Ask questions.

Kimberly--hope you connect with your onc soon (or have already). Getting the plan in place really brings a peace, even though you know there's some rough road ahead.

How ya doin', Vettegal?

I'll be back tomorrow to report. Have a basketball game (my kid's team is in the championship game for the holiday tourney) tonight at 8:15p--hope I can make it to the end of the game!

Onward!

D1

sheshe48 · December 2007

Hi Everyone,

I hope everyone is doing ok, I went today to find out what kind of cocktail i'm getting. I'm having Adraimycin and Cytoxan, I guess its 4 treatments once every 3 wks. I go on Jan 2nd, they insisted I have a port I have very bad veins, I did not want a port and the dr talked me into a picc line. I did not know what a picc line was. I should have just gotten the port, this picc line I think is going to be a royal pain in my butt. Has anyone else got the picc line? I start my first chemo treatment on the 3rd and I get a shot of I think Neulasta on the 4th. I'm not getting steroids, so I don't have to worry about weight gain. They did say i will lose my hair for sure, and I got my wig today,it's real pretty. And in 3 wks I get my breast form ( prothesis)sp. So I'm getting all hooked up, I'm also getting 2 new bras too. My chemo dr also said I could get mammoplasia (sp) on my good breast and it will lift it up and make it rounder and make it smaller to match my cancer breast. I think that is so cool, I'm like getting a boob job. Ha Ha Ha. again I hope everyone is doing ok,

Lots of hugs Jewells, Sherry

sheshe48 · December 2007

Hi Kimberly,

hope you are well, I did not have a mastectomy, I had 2 lumpectomies, I will have my chemo for 4 months and then it's off to 6 and a half weeks of rads, then I will be on cancer drugs for 2 to 5 yrs. Does this insanity ever end? How are you copeing with all this? What day do you start your chemo again?

Lots of hugs, Sherry

golfer779 · December 2007

D1 - I absolutely love your post. So much info with a touch of humor. What more could we ask for. Hope your daughter won. We spent about 10 years with a daughter (step to me but like me own) in b-ball. Always hoped for a scholarship, I know she could play community ball, opted for the University. To short for that!!!

Hoping that you continue to feel good. I'm sure since I havn't started it easy to say, but could it be that we're so educated in what might happen for se's that we think it will? Keep that positive spirit, and hopefully you will remind me of that.

Kimberly, did the onc get a hold of you today? I so many times talked to the same nurse just because she answered a phone where all of my poc's had voice mail and I never got the return call until a day or two later, drive me nuts!!!!

I see a second opinion on Monday, the local doc has recommended CMF 6 months. 14 days of pills and injections on days 1 and 14 of that for only 1 1/2 hours each time. Seeing other postings this seems light to me, and my diagnosis seems a little "uglier" than some.

Vettegal, doing cart wheels yet? Hoping recovery is going well. Did my post op today, questioned the burning sensatin in the under arm area towards the elbow, he reiterated that nerves are doing the mending and that is not a bad thing. Each day brings a bit more feeling, the pit definitely is still numb, and could not come close enough to stretching the arm to shave the pit for the appt. Told the doc I was doing the European look on the right side!

Thanks for everyone sharing your stories, I may not respond to every post, but I so look forward to and appreciate each and every story to be told,

Here's to getting better each and every day.... Carol

Miss_Lolli · December 2007

OMG....I just noticed you girls talking about the price of Emend. I have to tell you, I was off work at the time of my chemo, and a single mom to boot...Most insurance plans don't cover this drug because it's newer and not available in generic form. Well the wonderful drug company has a program and will send you Emend free if there is financial need! Just go to the Emend website and look for info on the "ACT program". The best thing.....not a ton of paperwork, just a paper for your onc to sign saying how many treatments you need it for, and one for you to sign and date. It was a God send as I would have spent 1400 dollars out of pocket for that one drug alone!

Good luck with your tx's and feel free to drop into the October thread should you have any questions. Lotsa smart and empathetic ladies over there.

jkiss75 · December 2007

Determined1, please keep posting every detail so we can be pepared as we follow you into treatment....blaze the path for us!!!!

xoxoxox

Jenny

Diana63 · December 2007

Hi everyone, I will be starting chemo on Jan, 3rd, so I thought I would drop by before I started. I was pushed back due to them asking me if I wanted to be part of a trial, I thought about it and refused. So now I'm set to start the New Year with a Chemo bang, 2008 here I come ready or not.

I have a question for those who have already started, can you drive yourself home after chemo & does anyone know of a good multi vitamin to help boost your immune system? Well that was two questions Embarassed . Besides the normal vitamins A, B12, C and etc. I have read that garlic is good to boost your immune system, and many others but it looks like to many vitamins to take in one day.

Barbeqrn · December 2007

I was able to drive myself to chemo as the benedryl wore off by the time the infusion was over. As far as vitamins, the 2 oncs I interviewed both said they did not recommend the A, C and E vitamins or any antioxidants during treatment and both recommended the B vitamins for energy....

Barb

vettegal · December 2007

good morning jewels!

No path reports yesterday, now i am thinking monday. The waiting isd the worst. Having a hard time sleeping. I like to sleep on my side but with the arm still numb and feeling like someone is attacking my armpit i used a pillow buffer and rolledover and fell asleep on my side. only for a few hours and back on my back again.

I am happy that everyone treatments went so well. I go to see the onc dr on Jan 14th to sign my papers and he will tell me what is next. I did find 2 wigs that really looked like my hair and we are going to order one first and the other one later. Price wasn't bad one is 160.00 and the one is 250.00.everyone calledme yesterdayabout my path results and it was a depessing day for me. My hubby went out to work a few hours and left me at home and iwas watching some movies that where sad and i cried alot and missed having my hubby close by to comfort me when i needed. but i got thru it ok. i wish i could shave that armpit...yuk i hate having a hairy armpit Yell

take care..xxooo

yuyubear · December 2007

Hi late Dec/jan 08 chemo gals,

HAd my first t/c (taxotere cytoxan) on Dec 27th, the infusions themselves really non eventful, except they kept using my right arm for the vital signs, where i had some lymph nodes removed. Will have to insist on them using my leg for BPs next time.

Steriods totally pumped me up so when I thought I would come home and crash, I went to the supermarket to stock up on stuff, today i am off the decadron so we will see. Last Emend today, no queasiness so far, just eating lots of veggies and protein. Yesterday got the Neunasty (neulasta) shot so just waiting for some of those side effects...

How is everyone else doing, D1 et al?

YH in NJ

golfer779 · December 2007

Anyone out there been prescribed CMF for 6 months? Would like to here your story. I havn't come up with anyone currently and/or gearing up to have that particular treatment.

Vettegal, sorry to hear that the waiting game is still on. I think I'd be calling them first thing mon morn. I actually got the nurse to read mine to me. The surgeon called two days after that and was so surprised that I had already known my results. Good luck, and hopefully your dh will be with you over the weekend.

Carol

georgias_mommy · December 2007

Hello January gals!

I started chemo (4 x TC) on November 30, so I wasn't quite a Nov gal. However, I jumped in to ask a bunch of questions. I usually post with the November and December groups, but since I'm only halfway through, I thought maybe my experiences could help some of you just starting out.

My next tx is scheduled for January 11, then final tx on February 1.

Here's a little more of my backstory...I had a lumpectomy on October 10 at Johns Hopkins in Baltimore which was the result of a very scary surgical consult here in WV. Here's a bit of advice....if you don't feel comfortable/confident with your medical team, do ANYTHING you need to do to feel that way. It makes all the difference in the world! The good news is that the surgeon that scared the bejeebers out of my husband and I is now practicing elsewhere. Whew! I'm having my adjuvant therapy here in Morgantown, WV and I think I feel even better about my oncologist and his staff than I did about my surgeon. I'll have rads then on to Tamoxifen for five years.

I used the first treatment as a "let's just see what happens" experience. Boy, did I learn a LOT. I had horrible bone/muscle pain and fatigue and, due to the amount of other meds, really didn't want to take MORE than necessary. Well, this time I took an Aleve every 12 hours and I had almost NO pain. I went from feeling like I'd been hit by a bus to almost normal. I would highly recommend trying this if you're on the TC regimen.

I had dry/raw/bleeding nasal membranes and dry cracked lips also. I used Simply Saline (spray, every few hours) for the nose and Carmex on my lips. Worked WONDERS!

The constipation was probably the worst. Do whatever you can to avoid this...drink gallons of prune juice, take peri-colace, eat more fiber...WHATEVER it takes. Even though you may not feel like it, exercising helps too.

I take a Tylenol PM to help me sleep at night. Those steroids don't let you sleep for long streches and I think that sleep is the one thing that we all need more than anything. With the Tylenol I'm able to sleep at least 6 hours in a row. It's a blessing!

Speaking of blessings, I haven't had any nausea to speak of. Supposedly, TC causes less nausea than AC. I'm a little queasy for the first few days, but I eat five small meals throughout the day and it works well for me. I did this during my pregnancy and it worked well then too. Make sure you take ALL of your anti-nausea meds when they tell you to.

As far as the fatigue goes, I've really not been able to shake it. I do take a multi-vitamin with iron and a Co Q 10 (Coenzyme) capsule daily, but I can't really tell if they are working or not. My bad days are 5 and 6, so I've just come to accept it and I rest as much as I can.

My white blood cell count took a beating with the first tx. My oncologist said that he wanted to see how I fared with the first one, so he didn't prescribe Neulasta or Neupogen for me. I went in for blood work about a week later and my neutrophil count was .036. They consider .5 too low and you have to be at 1.0 to get your next treatment. I was given masks, a heavy-duty antibiotic and sent to bed for several days. This time I had a 5-day Neupogen regimen and my counts are BEAUTIFUL! I'll continue that with the next two treatments. Please, please, PLEASE be careful with getting out in public until you know what your counts are. Especially at this time of year when it's flu season! My husband said something that I really thought about. He said..."why would you work so hard to beat cancer and then die of something stupid like pneumonia." He's got a way with words, huh? Laughing

WVgirl...where are you located? I wish you luck with your first tx!

(((hugs))) and warm wishes for everyone! Hang in there and don't be afraid to ask, whine, or share with each other. It's been the most amazing support I've had throughout this journey!

Sharon

SISKimberly · December 2007

Good Morning Jewels...it's not quite 9am here, and I've gotten all caught up...Wow, D1 and LJ13....thank you so much for blazing this trail and keeping us all in the loop....your experiences will be and have been so helpful for those us still waiting.

Sherry, I'm sorry I messed up on your treatment/surgery....glad you're getting all hooked up in the wig and boob department...It's good to hear a smile in your posts after previous worried ones. :-)

My cocktail is the same as yours with Taxotere added. I go for 6 rounds once every 3 weeks, then radiation after that...when, still don't know.

Carol, no, the oncologist's office and I never connected. We played phone tag, and I think perhaps they weren't there yesterday or something. So, I doubt chemo will start for me next week unless they call me on Monday to set things up. I do get another 100cc's added on the 3rd...it's like reliving my puberty all over again...only in fast forward...flat for two weeks, to small mounds for two weeks...to who knows what Thursday will bring...I like the idea of being able to decide what size I want to be, and getting to live with a size for a few weeks is like taking them for a test drive... :-)

For those of you exercising...how long past surgery are you? My bilat was three weeks ago this past Thursday. I have taken some walks, but it's been so darned cold and raining. I should be able to drive soon, so I'll have to take myself to the gym and use the treadmill.

Vettagal, I am sooooo hearing you on the sleeping on your side thing. My right side is a bit easier than the left, but still only for very short periods of time...the left is just not cooperating at all...painful. I know it will come in time...have to keep up the stretching excercises...but I'm impatient.

Steroid question....why do some of us have to use them and others do not? I'm not liking the weight gain side effect nor the wired feeling. I have to take Deca...something according to my onc the day before, the day of, and the day after...whenever that is.

Diana, let us know about this trial as you progress. What is the purpose of the trial?

WVGirl-The port site should be healed within 10 to 14 days. I've had mine in since my bilat 12/6 and it's been about three weeks. It's fine. Not sore or anything. I think you will be glad you did the port in the long run. Keep us posted.

I'm sure I've unintentionally missed commenting on some of your news- D1 you amaze with your comments for everyone on this post...you are Our Leader Extraordinare- OLE (that celebratory word is perfect!!!!) Couldn't resist the acronym. Hehehe.

Your SIS (Sister In Survival)

Kimberly

Jan 2008--Ain't it Great?

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