For those starting chemo in June

Sevenley · June 2004

Hi everyone!
I just go to the local hospital to get my tests and labwork done. My onc. is 2 hours away so they just fax him the results.

It's hard to believe that I'll be getting #2 next week.

Mary, my cannas got a late start. I (in all my wisdom) ordered a couple doz. new ones plus the ones I had from last year. I had no room for them so I had to dig up a new flower bed. Mine are only about 4 " high. Gosh, I love my deck and my flowers. It's so relaxing to watch the hummingbirds and look at my flowers.

I know about the fuzzy brain thing. At times I don't want to talk to anyone. I'm afraid of what might come out of my mouth. But, this week, it does seem to be better.

Anybody else having problems with their complexion? My skin on my face feels sensitive. I wonder what we should use.

This is day 11 for me. I get about 3 or 4 hairs when I run my fingers through my hair.

My daughter and two of her friends and my friend bought tickets for Brooks and Dunn mid-August. Just the girls. I am so looking forward to going! We're going to take my convertible and tailgate prior to the concert. I am so excited.

I hope that all of you are doing well!
hugs,
Lee

shelliks · June 2004

Well it's been a week since first A/C. I never got sick but I felt yucky at times. I spent most of the weekend on the couch, very achy in my shoulders. I gained 5 lbs in no time between the Decadron swelling and the hunger. Now that things are "moving" again, I've lost a few of those lbs. My gums are a little sore behind my bottom teeth but not too bad...I think the lysine is helping.

I have been fighting this since September and haven't had chemo since January. I must say, this is depressing. My kids are so young and I should be playing and going to the pool with a new bikini and my ponytail blowing in the wind. Nope, I'm wearing baggy t-shirts to hide my frankenboob and bandanas to keep my head from burning. It takes all the energy I have to keep track of my 7, 3 and 2 year olds and provide the basic needs, let alone play with them.

Okay, that's the end of my pity party. Thanks for listening.

Sevenley · June 2004

I hear ya shelliks. I'm tired of the one-boob-look. I'm just now starting to lose my hair. Summer is my favorite time of year and it is not supposted to be like this.

It has to be hard with small children. I really admire you going through this. I just have me.

But hang in there hon. I felt pretty good after my first week. I hope you will too. Remember why we have to do this. And we're here for you to listen to anything that you want to say.

hugs,
Lee

Dawnt · June 2004

hi,I'm on day 14 & still have all my hair.I thought it would be gone by now.I get a few strands but thats it.My next chemo is next tuesday & then only 2 left.I feel like I'll be halfway done.I ordered another wig,this one from Paula Young online.The hair doesnt feel as soft as my other wig but for $50 I'm happy with it.It almost looks like my real hair.Its so nice to see the sun out.Does anyone have problems with their nails chipping?Mine seem to break very easily.

NancyNY · June 2004

Hi everyone,
I just made it for June, June 29, I might delay until July 2, not sure yet. The treatment is CAF. I am freaked. Still need a bone scan, because one liver enzyme is slightly elevated. But since there was no node involvement, and no angiolymphatic involvement everyone assumes the scan will be negative. Just wanted to introduce myself, and say I'm terrified.

PJB · June 2004

Welcome to our no-one-wants-to-be-in-it club, nancee. You'll find lots of good information on here about getting ready for and through chemo.

Shelliks, I know what you mean about trying to deal with small kids, altho I only have one 6-year-old. I can't imagine dealing with this and THREE little ones.

I got my wig today and she warned me to keep it far away from the pool. My son seems to be pretty oblivious to what's going on in that way that little kids can be. But it's hard when I don't have any energy to play with him. As an only child, he can require quite a bit of attention! But Dad and friends are picking up the slack. And my son and I are doing lots of reading and Mad Libs and low-energy activities.

So I found my answer to chemo brain for me personally. I was totally foggy for two days. Turns out it's apparently just because I'd pretty much completely dropped caffeine from my diet. I had a Coke, and almost immediately got more focused. Onc. prescribed Ambien to help me sleep (which worked great last night), so hopefully I'll be a little more with it.

NancyNY · June 2004

Has anybody received CAF therapy? I don't see it much on the boards. Also, anyone from NYC?

dim · June 2004

Hi Nancee, I am getting 6 treatments of CAF starting tomorrow. I was dx about the middle of April, lumpectomy and SNB May 11. I am a little terrified too, but this forum has helped me so much. Just knowing what might happen during and after the treatment has given me some control and when Im in control I can do anything! I will let you know how it goes tomorrow for me, but it seems like everyone has a little different reaction. Im nowhere near NYC, Im on the other side in California. But I feel a little closer now.

Diana

mary1220 · June 2004

Hi girls, Well had to call onc. today. Noticed some white patches so new it looked like yeast infection in mouth.Got my elixer and took it every 4 hours.Seems I have a yeast infection, Some kinda allergic reaction because it has a antihistamine,vicodan and tetracycline. I have 4 meds in it and 2 make you drousey but haven't been.Frankly my throat has me worried I have sores all the way to my stomach and the hang down thingy is laying on my toung and I keep swollowing it. My mouth looks like a pus pit and frankly this is no fun and I want to take my toys and go home.Seriously, My heart and prayers go out to all the mothers still raising kids while going through this and the children going through this. May all the mothers live to raise their children and all the children live to have children.I will remember them in my prayers with all my girls here. Well another night of off and on nick at night and hsn or qvc. I surf the channels.I think I saw a spider no I have seen enough spiders.I ain't going there. This med combo has me a little flakey but I do feel good my bone pain is gone. I can't walk a straight line but my pain is good. See yas, Mary

Sevenley · June 2004

Mary, I'm sorry to hear that you're having this problem with your mouth. I hope that antibiotic kicks in soon.

Nancee, I'm happy to see that you found this thread. Good luck with #1.

My mouth still feels sore but it's just a minor irritation. Aside from being really tired, I'm doing pretty well.

It's day 12 for me. My scalp and skin is itchy and sensitive. My hair is coming out in groups. I'm not ready to face the clippers yet. I'd like to get a haircut but don't want to pay for a cut that's only going to last a week or so.

I hope all of you are doing well, considering.

hugs,
Lee

sdrayton · June 2004

For Nancee...

I had CAF therapy pre-operatively: five rounds of two weeks on, two weeks off, ending in April. It was crumby, but tolerable. Most importantly, it annihilated the cancer; I ended up having a lumpectomy and SNB although I was fully prepared for a mastectomy.

Some advice: find a toothpaste that does NOT contain sodium laurel sulfate (SLS). That's the foaming agents in all things cleanser. I believe Burt's Bees makes a version now, but even the so-called "natural" toothpastes like Tom's of Maine contain the stuff. I used a brand called Squiggle Enamel Saver; found in on the web. 5-FU is supposed to give you mouth ulcers, but I never had one.

My biggest complaint was constipation from the anti-nausea meds. I finally got on a regimen that included Milk of Magnesia which seemed to do the trick.

The oral Cytoxan (cyclophosphamide) gives you a dry, metallic, funny feeliing in your mouth, and I found that plain ol' water just didn't taste right. Or good. And I'm usually a water-holic. Iced mint tea and lemonade went down much better. In fact, I craved all things tart and lemony. Fresh fruits, especially pineapple, watermelon, kiwis and berries were very appealing, and popsicles.

If you have any particular concerns, please don't hesitate to email me directly. (shelby@shelbydee.com)

I wish you and everyone here the best of luck. I begin taxotere tomorrow, so any advice from those of you in the trenches would be much appreciated.

Here's a big hug.

shelby

NancyNY · June 2004

Thank you to all youladies. It is amazing how this non-exclusive club keeps growing.

Dim, I hope your first day was not too bad. I'm thinkingof you.

Shelby, Thanks for the info. It's reassuring to hear that this gets rid of the cancer.

Anybody out there have teenage children? I have a 16 year old son. told him I had breast cancer. He asked if I would be OK. Told him yes, but had to take care of it. Then he just went back to his own world. It's good that kids are oblivious.

Everybody try to feel good, and hopefully we will all get past this.

Tine · June 2004

Hi there,
new to the June Club. Started on June 14th (Monday). FEC for 6 rounds every 3 weeks. So far so good. Feel tired. Have the occasional headaches and react to the Zofran, My face gets red and hot but it goes away. Was a bit nauseas on Monday night. But I think that had to do with the fact that we went out for dinner after the chemo. Should have known better. Got some heart racing but that kind of stopped too. And my ears were ringing some fierce for a while. But man I am constipated. Had to go to get my throat checked yesterday and they gave me barium to swollow. Got some sonokot and hope that that will move my inners a bit.
How long after the initial chemo did you take you anti nausea drugs?? And after stopping, did you feel any different?? When did the mouth alcers start?? And your skin break outs?? I am so nervouse about the whole thing. I am waiting for the other shoe to drop and frankly don't want to be pukey all the time.
I have been able to go for daily walks and even worked a bit in the garden. But I sleep in the afternoon for a bit. And once I wake up in the morning, can't go back to sleep. Is that normal?? Have a hard time concentrating. But I guess that is normal too.
Well, good luck to all of you ladies. I wish you well and hope for the best for all of us.
Hugs to everyone.

Tine (Christine)

shelliks · June 2004

Welcome Cathy. Sorry you are here, but glad you found us. We have a lot in common. I'm 35 and my children are 7, 3 and my baby girl will be 2 tomorrow. I found my lump when my baby was 5 months old, but unfortunately, 2 doctors said it was "just a cyst". I was formally dx'd 9/03 when she was 14 months old. At first, it was hard to look at the kids without thinking the worst but now, they motivate me to kick cancer in the a$$. I would be honored to fight along side of you.

MaryKB · June 2004

Cathy,
I too, will be starting chemo on Monday; yuk. I am nervous. I am 46, 3 kids 1 husband and work part time. The greatest comfort to me is knowing God will get me through this and I will be stronger for it. Hang in there and I will be thinking of you on Monday.

rlswkndr · June 2004

Has anyone started losing their hair? My first chemo was June 3rd, and it is starting to come out,,, not in clumps, just lots of strands.
I have three sons, 2 off to college, and my 18 year old has volunteered to shave my head. I feel this will help him also deal with my breast cancer.
I have all my hats ready... they are quite cheap at wal-mart.
The other 2 always check with my their dad after they talk with me.. "Is she really alright?" guess they don't believe me!
Renee

orrtrish · June 2004

Renee,

I had my 2nd round of A/C yesterday, 14 days, like clockwork, my hair is starting to fall out. I can tug gently and it comes right out. Two of my friends noticed it but wouldn't tell me. I noticed it because the head is not the only place its leaving. My head is a little "prickly" and I guess that was the signal. Tomorrow I'll get it shaved off and resort to hats and bandannas. I was really nervous about this, but all in all, the rest of the chemo is a breeze so far, so I'll gladly take the bald look.

Good luck.

Patty

ncbeachlover · June 2004

Hi Gals,

Well, it looks like I'll make it in with the June Bugs. I was having severe cramping and nerve pain under my arm, so I went to my urgent care dr and got some pain meds and some other medicine that is an anti-seizure medicine, effective for nerve regeneration pain. I feel so much better, as I was not having a very good day.

First of all, I'll bring you up-to-date on my Wednesday onco visit and results:

They couldn't really see the spot on the liver that the CT Scan showed, using the ultrasound, so it's either nothing, or insignificant and will be watched in the future. The other breast is not malignant, but shows atypical cells, and my onco says my chemo is going to "zap all the bad guys anyway", so not to worry.

I was running a little temp, and my blood pressure was up. It turned out I was having a little 24 hr flu bug I guess, and I'm doing better today, except I've stayed home from work and I think I will through Monday after lunch. I have an appointment as a new patient with a Internal Medicine doc, who will coordinate my care with all my specialists, and he has hospital admitting priviledges.

I'm suppose to begin taking some Phenergan the night before and in the morning of chemo, then they'll give me Kytril and Decadron, IV before, wait a while, then drip CE, then push 5-FU, while I munch on ice.

I have the Rx for the Kytril and Decadron, which I will pick up before Thur. after I rob a bank, (thank God for insurance), which I will take afterward at home.

How does this compare with everybody's treatment of nausea?

Also...question for those of you gettine CAF - 6 sessions. How are you staged, what age, and why such an aggresive treatment? Did you have a MUGA?

I'm Grade 3,Stage IIB , 55 yr, so my doc said from recent conferences he as attended that Ellence is much easier on the heart, enabling 6 treatments instead of the usual 4. He feels that Adriamycin is more prone to heart damage, yet 6 treatments shows better results and prognosis for high risk patients, like me.

Don't mean to be a trouble maker...just curious.

Got to go...pain meds kidding in finally.

Belinda

NancyNY · June 2004

Hi Everyone,
Just updating. My oncologist recommended CAF. I'm not sure why, except it was the middle treatement. Belinda, I will ask her about what your doctor said. I will be 55 July 3. Guess what I did for my birthday, start chemo haha. I have invasive lobular cancer Stage IIA no lymphnodes. ERPR+ Her2_. It wasn't given a grade but the tumor had a high proliferation index. Though I am scheduled to begin therapy the 29 I am getting a second opinion on the 22. I will check out the other options. I went in for bone and CAT scans today, because my Alkaline phosphates are a little elevated. So I am still waiting for the results of those tests, but I'm thinking positive. Belinda, thanks for e-mailing me, I certainly will ask both doctors their opinions. However, the other choices that were given are still different than yours... AC and AC + T. Also CMF?.

mary1220 · June 2004

Hi Girls, Hey Lee, hope you have a great time at Brooks and Dunn. I can just see your bandana tails flapping in the wind as you speed by with your top down and your Brooks and Dunn CD blasting from the stereo.You go girl!!My mouth is better thank you. It still looks like something out of twilight zone but its better.Maybe i am just freeking high from the vicodan.Just joking, I am just swooshing a little around now. I am not taking 2 tsp.I quit smoking the first day of chemo and gee! It was easy on bad days but I could use a smoke about now. My kids have griped me out till I am scared they have video set up to catch me.I have wanted to stop for a long time but just kept on buying them. I didn't smoke till my late 20's.If they had told me lung cancer I would of understood and went on, sure never expected b.c.I have been in the pool with the grandkids for 3 days and got a great start on a tan. Hoping it will mask the whiteish, greenish chemoish color thats around the corner.My hair is still falling out a few strands at a time.I keep finding them on the keyboard. Well my onc is gone Mon. so go for round 2 on Tue. Boy can't wait to see what I will get this trip.Its kinda like opening x-mas presents. We never know what we will get, some good and some bad.Boy my memory is non existant. Its probably hidding from the chemo.I have to mess with patient meds. in about a week so hope it gets better.I have been working part days on good days but will be working more next week and have alot of responsibilities that I need my brain for. Gee hope I wont need anymore elixer.

dim · June 2004

Hello Ladies, First treatment of CAF yesterday. Very tired, probably from Ativan and the suspense. Got a headache which has come and gone all day (trying Tylenol). I take nausea medicine (ANZEMET) for three more days (seems to be working, no upchucking yet). Did some sewing and a little trip to the store today with daughter driving, also got to go to lunch. I drank lots of water Tuesday and Wednesday and am continuing extra fluids today.

My tumor was 1.7 cm IDC. SNB negative, ER/PR- also HER2 neg, Stage 1, Grade 3, got clear margins on the lumpectomy. I am 53 with a family history of breast cancer, lost my mother 29 years ago, my sister 19 years ago. So when it came time to decide which treatments I think the history made the difference. Also because of Negative Er status I wont be taking Tamoxfin so the doc thinks I should try the CAF.

Hugs to all,

Diana

Cathy_34 · June 2004

Hi ladies. I'm new here (unfortunately). I start treatments on June 21st - next monday. I look forward to sharing everything with other women that are going through what I'm going through. It really will help.
I had a baby in Aug 03 and breast fed her until Dec 03. Then in early March I found a lump that I attributed to a clogged milk duct. I put hot compresses on it for about 2-3 weeks and it didn't go away. I finally called my OB/GYN and they examined it and said it wasn't a milk duct so they sent me for a mamo and sono on 4/15. On 4/20 I had a ultra sound guided core biopsy and on 4/22 I was told it was malignant. So we scrambled to find an excellent Breast Surgeon which we did. On May 19th I had a modified radical right breast mastectomy. They removed a 3cm tumor, my breast and 28 lymph nodes. Thank God only 2 were microscopically positive. All my margins were clean. The tumor was negative for estrogen/progesterone receptors but positive for Her-2-neu (2.2).
On 6/21 I'll start my 4 doses of A/C and then I'll complete the treatment with 4 doses of Taxol. I won't need Tamaxofin (because of the neg. receptors) and I won't need the Herceptin. Plus no radiation is required either (the tumor was on the top of my breast, not deep within).

I just turned 36 years old and am Married to a wonderful man with 3 kids. My son is 6, my daughter is 5 and my baby (girl) is 9 months.

I have my wig and doo-rags all set. I had my EKG and Muga already done. I had a medi-port put in this past monday (the 14th).

I want the treatment to begin so it can be over and we can move on with our lives.

God give us all the courage to go through this! We will all be survivors

Love to all,

Cathy 34

mary1220 · June 2004

Hi and welcome Diana. You have come to the right place. There are a lot of answers and caring poeple here.I have a question for you. Did your mom and sister have the same kind of b.c.? I have IDC 1.7cm. er/pr.neg.stage 3 but her/2+++. There is no b.c. anywhere in our family at all.I have 2 sisters my mom died of pancreatic cancer 5 years ago.One sisters Dr. told her she doesn't have much of a chance for b.c. that my daughters would but not my sisters.I do know her/2 is found in pancreatic cancer but I haven't seen a path report to check my mothers. I have noticed an incidence of colon and pancreatic cancer in parents of b.c. patients.I have been doing a little investigating on b.c. its the medical interest in me. Thanks for your information and anyone who wants to post cause of parents death.Thanks, Mary

Sevenley · June 2004

Hi June girls!
Welcome to the new sisters who have joined our thread!

Renee: I started on June 4 -- close to your date. I bought a lot of my hats at Walmart too! They're cute and very cheap!

Belinda: That's great news on your liver scan. Will continue good positives that it turned out to be nothing!

Mary: I'm happy to hear that your mouth is getting better! My mouth sensitivity/soreness comes and goes. It's good right now; probably because I'm on the upswing. I hope you can quit smoking hon.

I'm sitting here picking the hairs off my shoulders. I'm at day 14. I just can't bring myself to clip it off yet. Funny, I was so afraid to tell my daughter of my diagnosis, more afraid of that than anything else. Now, I just don't want her to see me without my hair. I don't know why it's so hard.

I haven't had a taste for coffee in 14 days. I was the biggest coffee drinker -- had to have chocolate in it too. Now I have no desire for it. I'm trying to get back to more of an Atkins way of eating except for treatment week. I'll ease up on the meat. How are you all handling your diets?

hugs,
Lee

mary1220 · June 2004

I made a mistake in earlier post and put my stage as three its stage 1 but grade 3. I guess its pre chemo brain.Could be senior moment.I am interested if second round is worse than first or same? Anyone a few days past second round?Mary

Cathy_34 · June 2004

Good Morning Ladies,
Thanks to all for the nice welcome.

What is the F in CAF???

I am starting to get nervous for Monday's treatment but will enjoy my weekend anyway.
I plan to make this the best Father's Day ever for my husband...he has been such a God send so far during this horrible nightmare.

I live on Long Island, NY ... anyone else???

--Cathy 34

mzsandy · June 2004

Hello Ladies,

Just an update:

I had my first A/C on Tuesday and was out of work the next two days.

So, my first chemo wasn't all that fun. The session itself was fine - no problems - just a little sinus congestion afterwards.

But I got sick that evening and my nurse told me the anti-nausea pills weren't strong enough. So, I have to take 2 kinds (zofran and compazine)

The combination of the chemo and those pills make me feel like I have a hangover and flu all at the same time and all I want to do is sleep.

Today is my first day back to work. I am fortunate enough to have a few people live near me and I hitched a ride today. I really don't feel comfortable driving feeling like this.

I am still quite sleepy and groggy. I do ache a little - not sure if it is normal or from the Neulasta shot I had on Wednesday.

Hope this is the worst that I will feel.

Hugs to all!

ncbeachlover · June 2004

Hi Nancee and all you June Bugs,

Nancee,I really don't mean to be second guessing your doc or causing concern for you. Since you are ER/PR+ and I am neg. maybe he thought this would be a better regimen for you. He/she knows your case better than I. You might want to pick up a book called "Dr Susan Love's Breast Book". It explains what all the drugs are for all those initials and it's the "bible" for bc.

About the E in CEF, Epirubicin is more frequently used in Europe and Canada, more expensive, from what I'm told. My general health may not be as good as yours, so my onco thought it would be better for me to enable me to have a more aggressive 6 sessions rather than the usual 4 with Adriamycin. That is the "A" like all the A/C that the girls talk about. The C is Cytoxan. F is 5-FU.

My onco. ordered CT scans and bone scans before he saw me so he had the results when I met him. That's why my chemo was postponed, because of what they saw on my liver & other breast. Then I had ultrasounds. I also had a MUGA scan of my heart, with is complicated to explain, but he wanted to be assured I could take it, and I scored fine. He told me though, that the E, although easier on the heart is harder on the WBC, which might be a consideration of your onco.

My husband and I had a 2 hour training session on the chemo, it's affects and special dietary needs for certain situations and conditions. I'm sure your center has done the same for you.

A couple tips my nurse told me, was to put ice in my mouth when they "push" the 5-FU, to prevent mouth sores. Prepare a swish to use every 2 hours of 1 qt of warm water with 1 tsp salt and 1 tsp baking soda to prevent mouth sores. Some of the gals are using L-Lysine, but my nurse didn't seem to think it would do any better, and for me, the fewer chemicals and meds I have to use the better. I'm also had my teeth cleaned, a little dental work done, and bought a special high fluoride toothpaste to use with a SOFT toothbrush and NON-alcohol mouth wash. The dental hygienist told me to floss with WAXED floss. It would help prevent gum disease. There seems to be some debate on this, so ask you onco. nurse.

Buzz hair short when it starts to come out, but DON'T shave it. It damages the now tender hair folicles. Then they gave me a little hat to sleep in so the hair ends up in there and not in the bed. itchy!!!

Gosh, there's tons more I could tell you, and I don't want to come across as a "know it all", I've just had a lot of time to research, a lot of which I've learned on the BB, and it's been a long time coming to get to start next week.

Good luck, and everybody has such good ideas, I've learned so much from this BB. It's great to share experiences and learn from each other.

Keep in touch and good luck!

B :-)

rlswkndr · June 2004

It's done, my hair was buzzed by Justin. He had a good time making different haircut designs! Took some pictures of the big event! It feels much better than having it come out in clumps. Plus, my scalp doesn't feel as tender anymore.
I feel colder and had to put a hat on right away.
Not as bad as I thought it would be.

Sevenly, I eat more "South Beach" now. Good proteins, good carbs, less sugar. I still have my fresh fruit- except for the next fews days- it has to be canned because of my low WBC's.

NancyNY · June 2004

I will make it to the June boards too. Just got back the results from my scans. It's like everything you never wanted to know,luckily none of it was cancer.

Belinda, They told me I had dots on my liver too. My onc. says everybody does, and it does have to be watched, but, it's not cancer. (whew) Though why another liver scan in 4 mos?

I will be taking CAF I think,,,, How are you people handling it? I hear your hair comes out 2 1/2 weeks after you begin?

Oh, another wonderful bit of trivia from the scans. My heart on the scans showed some affects from having uncontrolled high blood pressure. But, my onc. reassured me, that the function they check to make sure you can withstand this chemo is good. Too much info can make you crazy. I know I'm rambling, but I am relieved there was no other cancer and we can go on to the next phase.

Anyone from NYC here?

For those starting chemo in June

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