Taxotere, Carboplatin and Herceptin

Donalee · September 2008

Hey chemo camp buddies! I've survived the week! Starting to get my energy back. I didn't even have to take a nap yet today! I'm 7 days out from my last chemo. Still get the wierd dizzy eyes though. I'm thinking its the low RBC's??? My mouth is coated with this horrible white crap, like thrush in a baby's mouth! I had it a little from the other treatments but never this bad or this long! I was one of the lucky ones who never got mouth sores(knock on wood), but maybe this is the beginnings of some? Like I said earlier I've never had the bad taste come the DAY OF treatment that was really soon! Usually it comes the 3rd or 4th day. It seems like I got a triple dose for the last treatment! They wouldn't do that would they?

This is now my Diahrrea week.(Lovely huh?) Right on schedule! Miralax the first week then imodium the second. I've got it down now that I'm done.

Can't wait to get my house clean!!! I think that has been one of my biggest depressing things just staring at the dust and thinking "oh well", funny how it's still there the next day and the next ......I did get through a 2 foot pile of mail today!! HUGE accomplishment!!!

Hope everyone's feeling O.K. That's all we can hope for!!!

Love you guys!!

Donalee

bethanybeane · September 2008

Hi all,

Boy, Donalee, I know what you mean about the mail and so much of it is the insurance stuff. I just have been stuffing all of it into an expandable folder to save for next February/March tax preparation.

Maggie, Wondering if the Sonata helped you out with sleeping.

I'm really glad to hear more about Miralax. I had been using Sennecot-S but it's very crampy and sometimes a bit explosive. Going to see how this compares.

Went to my office today for a meeting seeking approval on a project I've been preparing for for 2 yrs and it went well. (I don't usually go in during the first week -- I am so fortunate to be able to work from home) I'm very excited b/c the project is about sustainability/green building at the university here in Austin. The funny thing is b/c I had my TX yesterday and of course the Decadron -- my face was so red, people were asking if I'd been out in the sun. Hardly. It was good to focus on something good before I headed out to get my NewNasty shot this afternoon.

Wish the best to all, B

tbird57 · September 2008

Hi all,

Thanks for the good feedback on Claritin and Miralax - I'll try apricots and prunes too!

Bethany: my daughter is 26 and lives in Barrie, Ontario. We're from Chicago, I'm now in Phoenix, and she's near her dad in Canada. She's expecting her first baby and MY first grandchild in February. She already knows it's a boy, and plans to name him Mark Shane, for her brother - which makes me very happy.

There is a good thread in the HER2+ board about vaginal/mouth sores. This is something I've been really concerned about! Anyone here have any feedback about this?

Love and strength to all,

Teena

suemed8749 · September 2008

Teena: I'm so sorry that you had to deal with treatment while going through the loss of your son.

We have quite a bit in common; I'm from Ill. too and live in Phoenix now. Your first grandchild - how exciting!

Donalee - Uh, happy D Week!

I spent almost 3 hours in the dentist's chair today - two crowns, a filling, and a cracked veneer repair. It makes Donalee's D Week look good, huh???

Donalee · September 2008

Bethany, I love the NEWNASTY shot name! Perfect! Laughing hahahaha

OMG! Sue, I'd rather go to the Gyno's office than the dentist! God bless you! My week is definitely BETTER than yours!

Donalee

shelbaroni · September 2008

Hey guys...

Sorry I haven't been around much the last few days. After my son and lovely girlfriend were here, and all that cooking and the brunch and the wedding, I needed a couple days just to get my house back in order. Then yesterday, my husband and I did a 12 mile walk in preparation for the 3 Day. This morning, I'm going to do a shorter one...but I need to start stringing long walk days together. This is not to gloat, but just to show you how the body can spring back AFTER chemo! Tomorrow, I get my second Herceptin-only. (They didn't call me back after my echo, so I'm assuming it's OK!) It will be interesting to see if the Herceptin whaps me upside the head like it did last time.

Donalee and Bethany: Sounds like you guys are in good spirits, which warms me heart.

Where's Aly these days?

Teena: Your situation breaks my heart. Talk about bittersweet times! I recently read a book by a lady who's survived breast cancer that you could really relate to. I'm also an Illinois-an. I was raised in Rockford!

Well, it's off to Balboa Park for walking and the Art Museum (Georgia O'Keefe show closes this weekend.)

bethanybeane · September 2008

Aly??? Aly??? Where are you? Hope you are doing ok.

gramma23 · September 2008

Hi everyone! Thanks for your concern about my brother and aunt. It does seem like when it rains it pours.He had a bleeding hernia.

I had tx 4 last Wed. and have been so sick since then. I should have taken Clartin but I forgot to go get it. I was in so much pain all night but did take my pain meds.Sat. the sick feeling started and so we hoped that was all there was too it but no Sunday evening I was sick out of my mind. My poor husband kept getting me wet washcloths and changed my clothes and he finally thought about the meds. I had forgot if they were in the cabinet or my purse and he found it so that really helped. I should have taken them before I got so sick but I just can't handle the nausea. I am feeling some better now but still having some diarrhea and that awful chemical taste in my mouth.

When my husband had his hip surgeries they mixed prune juice with Phillips Milk of Magnesia. I called it a bomb because we almost did not get him to the bathroom but it worked. I think I would rather go with the MIralax than the bomb he got. I do try to eat fruits though and I love apricots. You know everyone has one thing that sets them off and cream corn was what acted as a laxative for my Dad. I thought that was strange but It does't taste that bad I guess.

Bethany I am happy you have finished tx 5. I can't wait until mine are done. I seen a lady at the chemo room and she apparently had colon cancer but they were starting her off with a bunch of new chemo drugs. I though how would I ever deal with that. These are apparently mean drugs too. I listened to the side effects and I felt so bad for her.

Jap, I don't understand why they didn't give you IV fluid with the blood. They did me but just part of unit with 2 units of blood. I felt good for a while until the side effects of the treatment began. I did ask the doc if he was going to give me blood again and he said no. I am not sure why but today my counts were up thank goodness.

Kay, after this treatment my lips were numb and so was my fingers but that is better. they lower my Carboplatin 50 mg but I am wondering if a lot of this chemicals taste and se are from the Taxotera. I guess it does not matter I have 2 to go I hope.

Kristy, they told me not to take supplements except a multi vit.. and calcium. I do think taking some after we are finished especially probiotics is a good idea but I do not know if I can do that taking radiation though.I will find out. I do eat yogurt though and the doc knows about it and does not care so he probably figures I don't eat that much which is correct.

Henson CHI , I get sore feet sometimes even before I started with tx. I always figure i was on my feet too long but I have had that once since I started tx. they are so hard to walk on. I never had the hand problem YET! I know if I would soak my feet in hot epsom salt water it did help some and I also have a book on reflexology where to rub your feet for different things.I figure you can find a topic on the Internet too. At least that can't hurt

Well I am off to bed and I wish everyone a good nights sleep. Including me! haha. I take Xanax and benadryal to help me sleep

Carolyn

bethanybeane · September 2008

Brenda???? Brenda???? How are you doing? I think of you often and hope you are managing ok.

Peace to you, Bethany

cupcake7 · September 2008

Welcome new campers and good bye and best of everything to Cindy for leaving us with this legacy of Camp Chemo.

For the new comers to our little camp I would ask each of you that has or have had Diverticulitis to be aware of the constipation and make aware of this disease to your Oncologist to make sure they keep a watch on you. I did not and the first Chemo blew a bowel from to much straining. I now have a temporary colostomy until after chemo and they will go back in and attach it, but it was a ruff surgery with me being loaded with a full dose of Carboplatin/Taxotere/Herceptin. My white cell count was 4.

I lost my hair on the second treatment, but by watching shell went ahead and buzzed my head before hand. I did not have problems with my nails falling out, but I do get numbness in my feet and once when I took my nail polish off the toes noticed they were turning black. They haven't fallen off yet and no problems. We are getting close to Halloween so they should be stylish by then.

I am going for number 4 TX (treatment) on Tuesday and at first I was scared to death, but now know how my body reacts to the chemo and can plan on how many days I will be down. For me the first day is fine, but the end of the second day I am feeling kina ucky. Sort of like when your coming down with the flu. By day 3 and 4 are my worst and become very weak. Day 5-6.7 I am tired and rest alot. The onc has changed my meds from Zofran (that usually works fine for most people but not me) to Ambein that kept the nausea away last time, which really helped. I eat very light the day of Chemo and then go on liquids, like chicken broth until my bad days are over. I don't feel much like eating anyway. Give the gut a rest as it is being attacked by the chemo. Be sure to drink lots of water to flush out the first remnents of the chemo the first couple of days. Make sure you have a BM too cause your liver needs to flush out the chemo also. Then depending on if this time you get the constipation or the diarrhea take the meds advised for you. By day 10 your body will be at the lowest and try and stay away from crowds or people that may be sick. Day 11 your body will start to rebuild the cells and repair the damage from the chemo. By week 3 you are feeling pretty good so plan your things on that week. Then you will get slammed again. For me my Herceptin the week after the big three cocktail kicks my butt, but doesn't bother me on other times. My TX is Herceptin every week, and every three weeks the big three for 6 rounds as I have a very aggressive breast cancer and they are hitting it hard. I also found that if I go in the day after the big chemo for a bag of IV it helps keep me hydrated and that could have helped with the nausea too. All these things you will learn as you go along. It isn't as scary the further you go.

Keep in mind you might just be one of the Lucky ones to go through Chemo with no SE (side effects) at all, some do. Your hair will grow back so don't worry. If you have bought a wig before hand or scarfs to go out in is helpful. For me I go commando most of the time. Most important be good to yourself and allow yourself time to rest. As a woman we sometimes don't do that for ourselves, but on this journey you need to make sure you do. We are all here for you at any time and ask anything you don't know and we will answer you or find someone who can.

You will love your port when they don't have to go digging in your veins every tx. You get used to it being there. Any questions on it just ask.

Brenda

KristyAnn · September 2008

Hi Everyone,

Thought I would stop by and check in- rads are going OK- 6 finished (out of 33) and I am back to work fulltime - so I am a little more tired but doing well. I have Herceptin and rads tomorrow so we will see if that knocks me down- hope not since my college daughter is coming home for the weekend (first trip home since she started Aug 20).

Rads folks arent realy crazy about taking supplements until I am finished with rads so I am eating as high antioxiodant as possible- they said anything I ate was OK just no megadoses. The increase in the diet feels great so hopefully I am stepping back toward recovery!

Kristy

Donalee · September 2008

Kristy,

I'm starting rads in October. I have a port on the right side and they are radiating the left breast(wats left of it) do you have a port and will the radiation affect it at all? Just thinking about that this morning as I've heard some people have rib pain also.

Donalee

shelbaroni · September 2008

Brenda;

You're sounding good! Look at yourself...stepping into that Head Counselor role. Good for you! Hey, I'm not altogether sure that you "blew a bowel" by straining. Pretty much the same thing happened to my husband 11 years ago. He had a case of diverticulitis that had advanced so far that it perforated the bowel. They had to remove 18 inches of colon, and because it was infected tissue, they couldn't resect it right away. That sounds a lot like what happened to you. Seeing what he went through, I really feel for you, having to go through that and chemo (especially with as much trouble as you were having at the beginning) at the same time. I think the strength you're showing now is a testimony to your faith. God bless you.

I go to Herceptin only numero dos this morning. I found out mine take 90 minutes because I get them every 3 weeks instead of every week. I'm glad, too, because it's quite a drive up there. I have some Netflix movies all ready in case I feel like crapadoodle for a couple days.

Hey guys--I have FUZZ on my head. I'm stoked!

gramma23 · September 2008

Hi Everyone! Have any if you had a really bad stomach ache after a Herceptin treatment? Well It may be from the big tx since I was still sick when we went. Anyway I woke up at 2AM this morning feeling like someone was sitting on my stomach just between the ribs.When I swallow I feel like someone is choking me. I think it feels like gas but I took some Gas medicine and only helped a little. I finally got a coke and I am sipping on that and I am getting a little relieve. I am not passing gas the other direction though which I usually do. I heard you can't count soda pop as a liquid but why is that? I mean I understand the caffeine but you can count the coffee you drink which I am not right now. I feel like my stomach is on fire. It is hard to swallow too. I may need to go for a walk and get things moving. I did throw up a lot on Sunday and I wonder if I strain something. I thought I had this figured out but I guess not.

Carolyn

AlyMarie · September 2008

Hi everybody. I'm here. Thanks for worrying about me. I haven't posted in a while. I'm fine, but soooooo depressed. I can't snap out of it. And what I was thinking when I read that Newsweek article just now I don't know. I should have known better when Shel said don't read it. Did anyone else who read it take from it that we're just going to die anyway? That all this we're going through is just postponing our inevitable death? I mean, I realize I'm in a pit right now but I feel like I just lost all my hope.

Aly.

rak · September 2008

I read that Newsweek article, and although I didn't find it to be the most uplifting, I did not take from it that we are all going to die anyway. We all have treatable diseases and many of us are curable. DO NOT LOSE HOPE!! I know so many breast cancer survivors who 10 and 20 years out from treatment, and many of them were treated back in the day when we didn't know what we do about targeted therapy (Herceptin). I even know an oncologist who believes we will someday have a cure for metastatic disease. I have also had periods of severe depression during all this when I can't get off the couch for days and all I want to do is cry, but it is usally after treatment and the depression lifts when I start to feel better. If your depression doesn't lift, please talk to someone, AlyMarie. You have a long healthy life ahead! Rose

cupcake7 · September 2008

Oh Aly please don't despair. Hey I'm looking for 13 more years by doing this treatment, and if I get that then by the 13 years there will be a cure. Your not going to die tomorrow so enjoy tomorrow to the fullest and don't worry down the road. Actually arn't we ALL, (healthy people also) , postponing our inevitable death? None of us can escape death at some time or another. We all are born and we all die, that is just a part of life. Look at the obits and you see people of all ages from all different walks and the way they died. I personally believe we ALL are born with an internal clock and when our time is up it is up, whether you have cancer, on a train, plane, or auto or just drop dead with a heart attack it is up. When it is our time it is our time. If this cancer takes me then my clock has run out. But Aly look at all the people who live long lives AFTER cancer treatment. Yes once we have cancer it is like diabetes, a life long health issue, that you have to keep a watch on, monitor, and care for but it is not an end. I thought my life was over with my dx of diabetes, but I learned to control it and watch my diet, and exercise and live with the disease over my head, but it doesn't stop me. And this cancer is the same thing.

Shel your right maybe "blow a bowel" was the wrong term, but perforated bowel that leaks in the body is the same thing to me. I got a hole in the bowel cause I was all blocked up with no where for it to go and my straining didn't help it. I just wanted to warn people who have it to be on watch from the chemo constipation.

Thanks Beth I am fine. Seems like when we have one that moves on from this sight more come on and soon they will be the head counselors to help the newbies coming on board.

Donalee glad your coming out of this one, and welcome back.

Teena I am going in on the Her2 board and check out the vaginal/mouth sores cause I have an issue with that right now and the Dr.s , all of them, act like this is something new. I am thinking if you get mouth sores, throat, the intestines, then why in the world wouldn't they think you couldn't get them in the vaginal area. Its all the same tissue isn't it? My onc had to go out in the hall to ask the nurse for advice??? Then yesterday I ask again and the nurse told me to go to my gyn, I e-mailed him and he said "since you have breast ca, you should not use estrogen. I am sorry there is no good solution". My God the guy couldn't even say CANCER. That irks me. He should have said. Come in and let me see if it could be something else and if it is caused by cancer if we can come up with something to help. I am going to have some major issues on Tuesday when I go back in. I am NOT on a belt going down the pipe line and get stamped on my forehead and ok every treatment and sent home to deal with the fall out.

Sorry to vent. My onc has been out of the office for the 3 weeks and no one to talk to and I'm feeling like I am getting the run around.

Can someone answer this one. Why don't I have a marker? Everyone else seems to have one. Do I get one AFTER treatment? How can they tell how well I am responding to treatment? I ask and the nurse said I don't have one????

AlyMarie · September 2008

Rose, thank you. I do see a psychiatrist and a therapist due to my depression issues, but unfortunately I don't respond to anti depressants. I also have an anxiety disorder and do not react well when I read things like that. I think this probably started when I was getting fluids after my last chemo treatment. I sat next to a woman who told me she is stage IV and terminal. She said she was given 3 years by her doctor and she's approaching that. She has an 11 year old daughter at home. I haven't been able to stop thinking about her since. My heart broke for her and her diagnosis honestly frightened me to death. My daughter is only 3. I want to see her grow up. And, I keep running into people who seem to feel the need to tell me all kinds of horror stories about people they know who have died or are dying from breast cancer. What is up with people who do that?

To me, that article was terribly negative and felt hopeless, if that makes any sense. I know being HER2+ like we all are makes for increased risk of recurrence to begin with, which Herceptin is supposed to kick butt on and reduce to the same level as those that are only ER/PR+, but when I read stuff like that I feel awful. To me the whole tone of the article screamed "why bother, you're doomed anyway".

<sigh>

Aly.

shelbaroni · September 2008

Aly:

It's good to hear from you. I take the blame for bringing that article to our collective attention, though my prayer was that I would paint such a negative picture of it that no one would read it. Classic "Pandora's Box" reaction...or perhaps the Forbidden Fruit. Aly, you wouldn't have done very well in the Garden of Eden, I guess. But neither would I. Anyway, in a way you are a little bit fortunate (as I am) in that you're able to pinpoint the triggers of your depressive episodes. My counselor told me that many people can't. If that article is truly a trigger, it might help to take an action step. I noticed in the next week's issue that there were no Letters to the Editor about it at all. I think we need to write some. Because this article was very deleterious to our collective state of mind, as women putting our lives in the hands of oncologists and paying a very dear price for these therapies. I think that you really need to let 'em have it! And maybe I do, too. Depression is such a real, and overlooked, part of cancer and cancer treatment. I really feel that if the health care delivery system would treat us more as whole people rather than just going after the TUMOR like special forces going after Osama bin Laden, the mind-body issues would be more under control. And it's really worth it going after depression, because studies have shown that morale (long-term) can influence treatment outcomes. Just keep talking to us, Aly. Just keep talking.

Brenda;

Your situation is a case in point. Your gynie doesn't want to deal with your heinie because you're on chemo and so you're the oncodoc's responsibility. That's how they play it. They pass the buck. Whatever part of you is malfunctioning the most determines the doctor who takes most of the heat for your treatment. If you started having seizures all over the place, you'd probably get turfed over to the Neuro-guy. I don't know...maybe I'm just cynical. But I think our system is SICKER by far than the people it treats. End of sermon.

Carolyn,

I've never heard of Herceptin doing THAT to one's tummy. I mean, you seem to have a somewhat sensitive system, but I've not heard of cramping like that. I would put in a call if I were you.

Well, I had my Herceptin today and I'm tired. BUT the nurse said that my ejection fraction from my last echo was 72 (she hardly sees 70's from people in their 50's), so the running, biking, walking is paying off. And (drum roll please) both my red and white cells are in the normal range!!!! That, in itself, is cause for celebration. And celebrate, I will.

Aly, I am praying for you. And I am going to get online with Newsweek and get caustic. I will even pull out my dusty old Ph.D. (which I only use to intimidate customer service reps) and sign my name with it. Should be fun. I haven't played the Indignant Bitch role for a long time. It was enough that the article scared the crap out of me. But when it starts making my friends depressed, that's enough to bring out the super-hero instincts!

rak · September 2008

Our hearts always break for those who are not doing well. As as oncolgy nurse my heart broke regularly, but it also rejoiced regulary for all those who were doing well. I am aware of the possibilities, both good and bad that the future may hold for me. But I find strength and inspiration from the good stories and there are so many of them. I have a great aunt who is now in her nineties. She was treated for breast cancer back in the 1950's. She had a mastectomy. No chemo. Never tested for Her2 because it didn't exist until about 10 years ago. She was in her 40's at the time of her diagnosis and she's pushing 100 now!! So keep Aunt Eleanor in your thoughts (and all the other long term survivors out there) when you feel despair. We will be like them!!! Rose

AlyMarie · September 2008

Hi Shelby. Yeah, telling me "whatever you do, don't look at this" is kind of like telling Lot's wife not to look back. )

My husband gave me a long spiel on the phone (poor guy has had to deal with me 4 times over the phone today) about how the media is notorious for printing garbage because that's what sells. When I read him this line:

"We take it out and say, 'You're all set, enjoy the rest of your life,' because really, what else can we do until it comes back?"

He snorted and said well, doctors are human and they're just as capable of spewing crap as the rest of us are. He couldn't believe a doctor would say such a thing. That line set the tone of the article to me. It was like "it's coming back no matter what so we're just waiting to see how long it takes". Of course, that doctor could have been the "C-" student in his graduating class, who knows.

My husband asked me if there was anything he could say that would calm my fears and I realized at that moment that there isn't. What a horrible feeling.

Thanks for the prayers.

Rose, my mother is a long term survivor like your aunt, God bless her. When I was 8 years old (I'm 41 now) she was diagnosed with breast cancer. She went for a mammogram with a friend of hers because her friend was too nervous to go alone. That's when they discovered it. I was in the waiting room and I can still clearly see her face walking out of the doctor's office. I asked her what was wrong and she said "nothing", but I knew it was a lie. She was 54 at the time. Her treatment was a radical mastectomy. They took her breast, chest wall muscles and just about everything they could scrape out from her armpit. She never had chemo or radiation or hormone therapy (or reconstruction, for that matter). She's 88 now and still doing well. She had another clear mammogram just a month ago. At one point when the doctors thought I might have a second cancerous spot in my breast (turned out to be benign fibro-fatty tissue) we would joke that if I had to have a mastectomy, she and I would have one good set of boobs between us (hers was on the left, mine on the right). ) I'd like to draw strength from her example but I have nothing really to compare myself to. I don't know how big her tumour was, or whether she was HER2+, or anything like that and neither does she. She doesn't remember the doctors telling her much about all of that. She's been pretty shocked and upset by everything I've had to go through with this and she blames herself all the time, even though it's not even remotely her fault (I do not carry the breast cancer gene). I'm keeping a journal for my daughter so she can read it one day and hopefully benefit from my experience somehow. I hope, I VERY MUCH HOPE that she will read it years from now and say "jeez Mom, those treatments were so stone age!!" as she heads off to get her breast cancer vaccine (or better yet, a vaccine against ANY kind of cancer!). I pray with all my might that she never, EVER has to even THINK about going through this.

Aly.

bethanybeane · September 2008

Go get'em for us, Shelby!

Perhaps you'll spark a dialogue -- and an A+ (not a C-) doctor/researcher might weigh in.

When I was too young I married an A+ doctor (divorced 33 years ago) who is now chairman of head and neck surgery at Columbia Univ and he says that this regimen is the cutting edge miracle drug and I trust him completely -- after all, we share a son and now a granddaughter.

Although you don't want to find out that you have the HER2+ receptors, the way I think of it is that we have a target. I think triple negative would be even scarier. And, I think often of the women who are still not being provided with this quality of care b/c of no health insurance or other challenges.

We're going to be all right and watched more closely than most women are. We have to face it that the risk for b/c goes up as we age and we must be vigilant, exercise, think positively, and pray and do for others.

At the same time, this is really hard and we need to be able to cry for ourselves and our children --- and complain --- and feel heard.

Love to all, B

AlyMarie · September 2008

Bethany, I have to say that from your photo you don't look like you are old enough to be divorced 33 years (did you marry when you were 2??), or have a granddaughter!!! That's amazing!

My Onc says that her patients who are not HER2+ are often disappointed to hear that they are not candidates for Herceptin, because it is such an outstanding treatment. She said most of them would prefer to be HER2+ so that they can get Herceptin so in a way she says I'm lucky (well, inasmuch as you can be lucky when you've got cancer). I've heard that my Onc is one of the top docs in the region so that's good news coming from her, I guess. )

Aly.

cupcake7 · September 2008

Aly your Onc is right us being Her2+ can reap the benifits of this new treatment called Herceptin and I was just reading an article that they are so close to a vacine that us Her2+ gals will take that will train our cells to reject the estrogen so we won't have the problem. When you were 8 your mother was dx and here she is 88 now..she probably thought like you that she wouldn't be around to see her daughter grow up and look what happened. You WILL be around to tell your daughter yourself. As difficult as it is you have to retrain your brain to focus on the positive and not the negative. There is a procedure I use that I am not sure without showing you how it would work, but hopefully I can. Everytime you think the thoughts of this cancer taking your life you hit a table or something near you real LOUD. I mean smack it until it rings through out your house and say STOP! Then immediately think thoughts like I am going to live a long life, see my daughter grow and when she gets married help her with her wedding dress. If you do this process over and over you will train your brain to dwell on the positive. It is work cause you will want to keep dwelling on the negative, but if you try this you will see it begin to happen. I have been in depression and I think God allowed it so I would know just how awful it is and how difficult it is to come out of it. I had all the skills to do it but couldn't so I do know how bad it can be.

Donalee · September 2008

Hi Aly! Glad to see you posting again Laughing I hope this depression lifts for you. I know I've been feeling like that a lot lately. I have 3 kids. 21,15,11. They are the ones that seem to keep it all in perspective. I know your daughter is only 3, but look to her every single day for your inspiration for a great attitude. Kids (and we were one at one time) have such great channels of natural energy that it can't help but rub off on you. I think you're lucky to have such a prescious one at home. To me it would be harder living alone and confronting such depression.

Carolyn, so sorry you've been sick! Have you tried taking Zantac? I thought I was having a heart attack the other night, and took zantac. After about 15 min. the pain in my chest went away. It was severe heartburn. Sometimes soda can make it worse. I hope you called your onc. about it.

Brenda, you have a great wisdom about you. You're right on the mark with your advice. Please keep dishing it out for all of us! I love the idea about hitting something.

I have been trouble sleeping lately! AND I am NOT on steroids anymore! I used to go to bed around 9:30 and get up around 6:00. Now I can't get to sleep so I get up, come downstairs and watch the blasted T.V. until around midnight! Then force myself to go to bed. Sleep to maybe 3 or 4. Then when the alarm goes off around 6 I'm dead asleep! I'm getting all screwed up! During the day I'm soo tired, but I don't let myself take a nap so I don't make things worse. I think I'm going to try a advil night time tonight maybe that will help.

Shel, I've started drawing again. I used to draw a lot and it is really helping me with depression! Congrats on the fab. MUGA!!! I'm jealous. My best was 65! No wonder you can walk so damned far!!! I tried so hard to run 3 miles during treatment (3rd week only) and can never do it nonstop. I always lose my breath! I have to stop and walk to catch it up again! Before treatments I used to run 3 on the treadmill but running outside is a lot tougher! Any suggestions?

Donalee

cupcake7 · September 2008

Thanks Donalee. That was "something" and not somebody by the way..lol I use this procedure on my patients and it does sound silly but it does work. Sometimes when I have sleep problems I take 2 Tylenol PM's and it does the job for me. Take them two hours before you need to go to sleep. Once you have a few good nights sleep to put you back on track you can stop them. T.V. also stimulates your mind so try music or reading to help you relax.

shelbaroni · September 2008

Donalee:

I'm glad to hear you're drawing again. On the sleep thing. I had trouble sleeping BEFORE chemo. Especially around the time of my dx and surgeries, because of night terrors and the worry demons. I have to admit that I self-medicated with alcohol more than I should have. But then my nutritionist started me on large doses of melatonin. That stuff really works for some people. It works for me sometimes. There are studies that indicate that up to 20mgs a night actually slow the growth of breast tumors as well. So not only is it good for sleep, it's something our bodies need. Then once I started chemo, I discovered Ambien (my poisoner prescribes it to everyone). It knocks me out good! Especially boosted with melatonin! I usually wake up once or twice to pee or something and then go right back to sleep. But if I'm really anxious and wake up freaked out in the middle of the night, I boost all that with a xanax (which is my routine premedication before medical appointments of any kind). I use xanax rarely, so it really sends my anxieties to Woodstock when I use it!

About running. The treadmill is easier than running outside, because you're not actually going anywhere, and the machine is doing some of the work. If you want to simulate more the conditions of running outside on the mill, crank the elevation up to +1. You probably will have trouble running until your red cells are back where they should be. I knew mine would be normalized, because this last week I got my 10 minute mile back--can't sustain it for long, but it's back! Combining running and walking is a GREAT way to get your stamina back. Decide on a distance you're going to go and then just alternate. Don't run until you're exhausted, though, because then you won't want to run again after you walk. Maybe switch up every half mile or so. Let me know how you do. Personally, I'm taking a self-imposed lounge day today because I had the big H yesterday, which made me feel lousy last time. So I'm banking energy for the weekend.

Un buen fin de semana a todas!

shelbaroni · September 2008

Aly:

Sorry to disappoint you, but after slogging through all the online comments that will never see print on the Newsweek website, I wrote a scathing reply. Then I spent almost an hour trying to post it. I used several different names, user names and two different email addresses, and it wouldn't let me register or post! I am now trembling with frustration. So I give up! Just know that there are parallels between that article and the Tree of Good and Evil. Facts and truths presented before a person is ready to process them are not God's truth. Think about it. Adam and Eve, in their childlike innocence were perfectly happy before they ate that apple.

AlyMarie · September 2008

Shel, you haven't disappointed me. I think it's great that you even tried!!

The problem is knowing what are facts and truths and what is pure crap. Bethany's ex says we're on a cutting edge regimen. We hear about people who are decades out from treatment and cancer free. My Onc says this treatment will give me a 92% probability of long term cancer free survival. Then this article comes along and says basically (what I got from it anyway) that it's just going to come back and kill us anyway. Which is the truth exactly?

bethanybeane · September 2008

All,

I've just felt so blue since I've read the last few posts and I'm not sure I've even read THE Newsweek article but here's an article of encouragement. I needed to to read this one after thinking about this and assimilate.

Eight years after its approval, Herceptin emerges as
the best weapon against HER2-positive breast cancer.

By Monica Zangwill, MD

There are certain emotional moments that we all remember. The birth of a child. The death of a grandparent. The first time the doctor said, "Cancer." For Jen Levinson, a 39-year-old breast cancer survivor from Ponte Vedra Beach, Florida, one of those moments came in a most unlikely place.

Levinson was diagnosed with stage 2 breast cancer in 2000. Shortly after her mastectomy she joined a clinical trial of a new anti-cancer drug called Herceptin® (trastuzumab). Five years later, Levinson attended the 2005 meeting of the American Society of Clinical Oncology to hear the results of the study. Sitting in the audience as the data was unveiled, she says, was one of the most moving experiences of her life. "When they talked about the amazing results, " she says, "it was really incredible."

What Levinson heard that day was that Herceptin, when given after surgery to women with HER2-positive breast tumors, could reduce the risk of cancer recurrence by almost 50 percent. This was big news. And, as it turns out, Levinson was not the only one excited by it. Within days, doctors and patients around the world applauded the news. Few other cancer drugs had yielded such profound results in clinical trials.

Doctors Say the success of Herceptin, which can be used for the 20 to 25 percent of breast cancer patients who are HER2-positive, is astounding. But, like other great advances in cancer treatment, the path to success was not easy. Herceptin's rise to prominence actually took many years and required much hard work by numerous doctors and thousands of patients.

The History of Herceptin

Back in the 1970s, scientists noticed that certain genes in animal tumors were involved in turning normal cells into cancer cells. Looking at similar genes in humans, doctors made some interesting discoveries. They found that one gene, called the HER2 gene, (HER stands for human epidermal growth factor receptor) that is present in normal breast cells was overly abundant in some malignant cells.

With more investigation, doctors learned that the HER2 gene can create a protein receptor that sits on the outside of cells. This HER2 receptor helps trigger the chain reactions that cause the cell to abnormally divide and grow. George Sledge, MD, an oncologist and researcher at Indiana University, says, "HER2 is involved in pretty much everything you would be interested in for cancer, including growth, invasion and metastases." Further research on those malignant cells with extra copies of the HER2 gene revealed that not only did they have more copies of the HER2 gene, but whereas a typical breast cell has about 50,000 HER2 receptors on its surface, a breast cancer cell can have as many as 1.5 million receptors.

In the 1980s doctors began to measure HER2 in the tumors of women who were newly diagnosed with breast cancer. Using an immunohistochemical (IHC) analysis that measures the receptors on the outside of the cell or a fluorescent in situ hybridization (FISH) analysis that measures the copies of HER2 genes inside the cell, doctors can look for HER2-positive cells in breast tumors. Tumors with a 2+ or 3+ reading on IHC are currently considered to have too many copies of the HER2 protein receptor (referred to as "overexpression") and are HER2-positive. A positive FISH analysis, which registers an excessive number of copies of the HER2 gene (referred to as "amplification"), is also considered HER2-positive.

As doctors began testing more women for HER2 in the 1980s, they found that women with HER2-positive tumors had a worse prognosis than women with HER2-negative tumors. Women with HER2-positive tumors tended to have recurrences of their cancer or developed metastases more frequently than women who were HER2-negative. This early finding was disappointing. But, early on, some scientists saw a silver lining in this dark cloud. All those little copies of HER2 were just sitting on the cell like ducks in a row waiting for a specialized drug that targeted just the HER2 receptor-a drug that homed in on those cells with excess HER2 receptors, effectively picking them off and dismantling their cancer-causing apparatus. It was a great idea but one that required creating a new drug in the lab out of monoclonal antibodies, drugs that attach to proteins on the surface of cancer cells and interrupt the cell's growth signals. A few years later, Herceptin was born.

Herceptin on Trial

"Herceptin targets HER2 receptors outside of the cell," says Dr. Sledge, which allows it to specifically attack cancer cells. A bonus effect of the targeted mechanism of Herceptin is that it does not affect other fast-growing cells like those in the hair follicles or stomach lining.

After the initial studies with women who had advanced breast cancer showed very promising results, the Food and Drug Administration approved Herceptin in 1998 for metastatic HER2-positive breast cancer. Although the drug was approved for weekly use, clinical trials have found Herceptin to be just as effective when given every three weeks and tripling the approved dose to 6 milligrams per kilogram of body weight.

In the early 2000s several phase III clinical trials began to test Herceptin, which costs up to $60,000 a year, as first-line treatment after surgery for women with early-stage HER2-positive breast cancer. Levinson joined one of these clinical trials in 2000. "I enrolled in N9831," she says about the designation of her trial, and was randomized to the arm that got Herceptin." In the NCCTG (North Central Cancer Treatment Group)-N9831 trial, Levinson had an equal chance of being placed in one of three groups. All three groups received standard chemotherapy with Adriamycin® (doxorubicin) and Cytoxan® (cyclophosphamide) followed by Taxol® (paclitaxel). One group got Herceptin for one year starting at the same time as the Taxol treatment; a second group got Herceptin for one year but did not start the drug until chemotherapy was completed; and a third group, called the control arm, only received chemotherapy. Levinson was one of approximately 2,700 women who participated in the trial.

A similar clinical trial called NSABP (National Surgical Adjuvant Breast and Bowel Project) trial B-31 began in February 2000. This trial, which treated more than 2,000 women with early-stage HER2-positive breast cancer, had two groups. Both groups received Adriamycin and Cytoxan followed by Taxol, but only one of the groups also got one year of Herceptin, which was started at the same time as Taxol.

Because the B-31 and N9831 trials were so similar, the trials' investigators pooled their results for analysis and presented them at last year's ASCO meeting, where Levinson heard them. Like everyone else, the investigators were amazed with the results. "The differences between the groups were huge," says Edith Perez, MD, a principal investigator of the N9831 trial. "Herceptin really improved outcomes when added to chemotherapy."

A large international trial called HERA (Herceptin Adjuvant Trial), which was also discussed at last year's ASCO meeting, found almost exactly the same results as the American trials. The HERA trial, which involved almost 5,100 women, provided more good news because it showed that giving Herceptin immediately after chemotherapy could still reduce the risk of recurrence.

When the data from these three trials (N9831, B-31 and HERA) were released at ASCO, the future for many women with HER2-positive breast cancer turned around almost overnight. Levinson could sense it when she heard the results. "I felt so lucky to have been part of that trial because it was groundbreaking." No longer did having a HER2-positive tumor mean a poor prognosis. Herceptin could beat HER2-positive breast cancer in many of the 250,000 women diagnosed with the disease around the world each year. Genentech, the maker of Herceptin, filed for additional approval of the drug in mid-February for early-stage HER2-positive breast cancer. If the application receives priority review status, the FDA will have to make a decision by August.

Taxotere, Carboplatin and Herceptin

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