Taxotere, Carboplatin and Herceptin
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Thank you, Bethany. THAT is a very well-written article, boiling down the clinical trials in the development of herceptin in lay terms. Where did you say you found that?
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Yes, THANK YOU Bethany. That was a terrific and very informative article!
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Thanks Bethany, that was fantastic and very hopeful (despite the fact that I managed to pick up on the *one* negative thing in the whole article <sigh>) which the other article is definitely not. Obviously all of us on this thread are also topo II alpha negative (or else we'd be getting Adriamycin) so it was good to see the paragraph on that as well. It really does sound like we're getting excellent, up to the minute care and that our Oncologists are testing for the right things.
Aly.
P.S. I want to say I'm so sorry if my depression brought anybody down, that was not my intention at all.
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Great article Bethany. Thank you. A question for those of you with longer experience with Herceptin, especially Shel - I am a runner (half-marathons and 10K races only), but my onc. told me no running while I am on Herceptin. She thinks that it will over-tax the heart and if my heart function is reduced, I might have to stop taking Herceptin (which I DO NOT want to do). She says walking is fine and mild exercise is very important, but can't approve running. A whole year seems long. Sounds to me that some of you have maintained high level aerobic exercise. What advice have you had?
Gina
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Aly:
I don't think I was ever tested for that topo II. But you have to consider both the benefits AND risks of what we're doing, and adriamycin is SO MUCH more injurious to the heart than our regimen.
Gina:
Speaking of matters of the heart...no one ever said anything to me about not running. I just ran. All through chemo, whenever I didn't feel like I was going to die, I would get out there and pound the pavement. Even at 12 minute miles, huffling and puffing like a 5 pack a day smoker, at the nadir of my red cell production. My doctor says nothing. My nurse all along has said "Push back." So I push. The farthest I have run since beginning chemo is 5 miles. But since I'm getting ready for the 3 Day, most of my effort has been redirected into long walks, which I hate because it's boring and it take a lot of time. But as soon as the event's over, I'm back into running and more intense forms of activity. Isn't it possible that aerobic activity would help PROTECT your heart? I've always reasoned that if I can actually DO something, it must not be too bad for me. But maybe I'm wrong. The folks in Suite 420 know what I'm up to and haven't asked me to stop. So I guess it's just one of those inter-doctor differences we're all so fond of.
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Beth that was a great article. Positive thoughts is what we need to fill our heads with. I'm interested in the Tykerb and want to do some more insight research on it. Any one know where to look?
Aly sweetie you never bring anyone down...we love you
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Thanks, Bethany. When I was at the Relay for Life last spring, I saw a sign stating that funds raised by this event go to research and had contributed to the discovery of Herceptin. I hadn't even started chemo yet, but I knew I'd be getting Herceptin, so I took it as a positive sign (and I needed any of those I could get at that time!) I didn't read the Newsweek article - I have enough success scaring myself, don't need the media doing it for me.
Aly, any time you need to vent, cry, confess your deepest fears, please feel free to come here. I keep my fears pretty much to myself - I don't want to scare my kids and don't want to bring down the adults in my life too often. I know that everybody here gets it - it may seem irrational to others that I have moments of pure terror, but it makes perfect sense here. Hope you're feeling better.
After a week of stuffing myself (I hit the big 55) on 3 b'day cakes and 3 restaurant meals (plus leftovers), I MUST get back to a sensible eating plan. Plus I've been fighting a cold all week plus the ridiculous 3 hours in the dentist's chair plus getting Herceptin yesterday, and I haven't moved my sendentary body beyond a slow saunter all week. I'm feeling pretty disgusted with myself right now - healthy food for dinner tonight!
Gina, your doctor's advice seems counterintuitive to me - it seems like you'd want to exercise your heart to build it up and keep it strong. But hey, where's my MD????
Everybody have a GREAT weekend!
Sue
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My doctor uses a MUGA scan to check heart funciton during chemo and herceptin and mine has actually improved during treatment - was 63% before chemo, 62% in the middle and now 66%- I walked a ton during chemo- like 60-90 minutes a day at around 3-3.5 mph. My doc is an exercise fanatic during treatment.
My hair is getting darker- still salt and pepper but at least a lot more pepper coming in these days!
On the sores thing- I only had one mouth sore during one round of chemo but I had mucosal sores on the outside of the vaginal and rectal area all during chemo- in Texas in a HOT humid summer- my husband laughed at me because I would stand naked in front of a box fan after taking a shower to make sure everything was DRY DRY before getting dressed because the heat and humidity really bothered them. I also used a ton of aquaphor!
Kristy
Kristy
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Thanks for your comments about exercise. I too thought that running would help keep my heart strong, but I feel the need to heed the onc's advice, because I'd really kick myself if the running caused enough stress on my heart to work synergistically with the Herceptin to reduce cardiac function and cause me to be taken off Herceptin. Short term pain for long term gain? Apparently there is about a 15-20% chance of reduced heart function with Herceptin and it is reversible. My onc said not problem with moderate weight bearing exercise, swimming, brisk walking etc. When I go in for my appointment and blood tests on Monday, I'll have to ask about cross-country skiing this winter. That's even more of a passion for me than running! I'll let you know the verdict.
Gina
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If you would like to have the link to the source:
http://www.curetoday.com/backissues/v5n1/features/herceptin/index.html
Love to all,
B
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My understanding from my Onc is that the risk of reduced heart function is 1-4% and a rare occurrence, providing you don't get Adriamycin. It's the combination of Adriamycin and Herceptin that raise the risk of heart damage. I got this spiel after going in and making her send me for an EKG after a weekend of bad palpitations. She looked at me very strangely when I said I was worried about heart damage from Herceptin. Go figure!
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Brenda, here's a link I found to Tykerb information:
http://www.medilexicon.com/drugs/tykerb.php
Sleep well, friends.
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Thanks beth. Went in and lurked around awhile. Boy talk about being depressed! Metastatic breast cancer (what I have) is the most advanced stage of cancer. Less than 10% of breast cancer patients have an initial diagnosis of this. Just my luck. Currently, there is no cure for metastatic breast cancer. All they can do is keep the cancer from getting worse for as long as possible and maintain a good quality of life. I should have taken my own advise and stay away from reading stuff like this. Better not to know. I am drawn to it like a moth to a flame. I want to know, but better I don't. It sure weighs heavy on the day though. Hard to stop thinking about it. I did print out the information on the Tykerb and will ask the dr. next visit about it. Sure has brought up a slew of questions for the visit.
Tomorrow I am taking hubby and we are getting out of town and getting on an open train and riding down beside the river and through the Autumn farmlands. Hopefully I can leave cancer at home for awhile and live like a normal person before big chemo hit on Tuesday.
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Brenda;
You know, in your last paragraph you hit the nail on the head. You said "I CAN LEAVE CANCER AT HOME FOR AWHILE AND LIVE LIKE A NORMAL PERSON...". That's what it's all about sometimes. Like last night when I was waiting for my 9 year old son and his overnight guest to quit playing games and go to bed, I started spelunking around this site looking at some of the other conversations. My God--it was like a double black diamond chute on pure ice into psychic hell! Then this lady from our church called me whose 80-some year old mother has breast cancer and they're talking about putting HER on chemo. It's all more than I can bear! I woke up in a funk. But what redeemed the day was going over to our church for a workday and coming to find out that we were hosting a Hispanic church's jog-a-thon to benefit their kids' program. So I got a couple people to kick in money for me, took off my baseball hat, and within five minutes, I was out there running in the men's heat. (I'd gotten there too late for the ladies'.) Every lap I counted out in Spanish and yelled "Yo puedo hacerlo! That's about as NORMAL as it gets. And it feels good. I think we should all make a pledge to do something "normal" (for us as individuals) every day. This thing brought us together, true. But it can't define us!
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Well said, Shelby!!!
thank you for sharing your remarkable energy. I have learned to stop googling and spiraling down into the dire side of things. Gonna stick to the BreastCancer.org resources and the list of questions I print out for my doctor each time. She keeps a copy in my file and we joke about my agenda.
Brenda, Let not your heart be troubled. ((()))Bethany
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And when it finds us anyway, sometimes we just have to laugh at it. 21-yr-old dd and I went to the grocery store today - I was paying at the check-out when she came over and without a word set down a pink teddy bear singing "I Hope You Dance." I'm sure some people are touched by this sort of thing, but she knows I'm not exactly sentimental . . . I growled, "Get that damned thing away from me," then we both cracked up. I'm sure the cashier thought we were horribly callous, but that's OK. The two of us sharing our slightly twisted sense of humor is also about as normal as it gets.
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Brenda, forgive me but I'm confused about your statement about having the most advanced stage of breast cancer, I think because your signature line says your diagnosis is stage IIIa and not stage IV. My understanding is that metastatic breast cancer is cancer that has spread to remote areas, such as lungs, bone, liver, etc. I remember you saying you had some lymph node involvement but I didn't remember anything about spread to other areas? If your doctor diagnosed you at stage IIIa (which would be because of lymph node involvement) then that's not nearly the most advanced stage of the disease. I'm not trying to be nosy and please forgive me if I missed a post that already explained this, I just didn't want you to be sad and/or give up hope!! That wonderful woman I met right before my first chemo treatment had lymph node involvement (stage IIIa!) and she finished all her treatments and was told she only has a 12% chance of ever hearing the word cancer again. I think that's pretty darn good!
Again, I'm not trying to offend or be nosy, I just wanted to understand and maybe see if I could offer some hope here!!
Hugs,
Aly.
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Not at all Aly, we are family in here and nothing said offends. Thats what this sight was saying with cancer that has spread to the Lymph Nodes is the same catigory as to other parts of the body. Sort of if its there most likely it is everywhere. Although cat and bone scan said nothing showed up yet, which made me feel pretty good hearing that. That was until I read this. My Onc said I have locally advanced breast cancer stage 111A, metastatic to Lymph Nodes. Is that different than Metastatic Breast Cancer? Not from this writing. I mean all day I was sitting at the train station waiting for the glory train with my ticket in hand just waiting to have it punched and get on board. It threw me into a depression spiral.
I have more questions than answers now. For instance why, outside of money, wasn't I given a pet scan? If it is the brain I think I would want to know. Can this kind of cancer have a tumor marker? What test are monitoring this Chemotherapy at how well it is working? Are they just guessing at this point and hoping it works? I feel distant from my Onc as she has been gone for 3 weeks and no MD monitoring anything. I feel like I am on a conveyor belt just going along and getting a stamp on my forehead every week when I go in for treatment and sent home to deal with it. She don't know about vagina sores??? Or how to threat them? My biggest question I want to ask is how many patients does she have? Outside of my general...female 63, prior abnormal cells five years ago removed I don't think she knows anything about me. Sorry it sounds like a one person pitty party going on here, but that is why I need to vent in here. I NEED to get this all out so I can go tomorrow and get it out of my head.
Shell your expression of psychic hell was funny and made me laugh. All of you write things that touch me and helps my day. I'm climbing out of the hole now so feel better after writing it all out. Thanks for listening....
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Brenda, I've always wondered about the "mets" in your signature line also. The way I understand it, lymph node invovlement is NOT the same as metastases to the bones, liver, brain, etc. Hopefully, your lymph nodes caught the cancer cells BEFORE they had a chance to travel elsewhere in your body. The lymph nodes are surgically removed, you've had chemo to kill any possible cells that MAY HAVE traveled elsewhere in your body, and now Herceptin is also shutting down any cells that may have survived.
It's too bad your onc doesn't have better communication skills. You certainly shouldn't have to deal with something like vaginal sores on your own. But I think that the cat and bone scans would have shown any spread beyond your lymph nodes. Right now, Brenda, your cancer is gone as far as you and your doctor know. You're doing everything you can to prvent a recurrence or spread elsewhere in your body. Sweetie, you have a right to look forward to the future with hope!
You've been through so much during treatment. Look forward to putting that all behind you, being healthy again, and living your life.
Love, Sue
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Hi Brenda. I do not believe that locally advanced to the lymph nodes and spread to other areas of the body are the same thing. If you had metastasis to liver or bone or any of the other spots that breast cancer usually turns up in when it metastasizes, you'd have been stage IV at diagnosis, not stage IIIA. Here's a definition from a-zbreastcancer.com:
Metastasize (meh-TAS-ta-size)
To spread from one part of the body to another. When cancer cells metastasize and form secondary tumors, the cells in the metastatic tumor are like those in the original (primary) tumor. Thirty to forty percent of treated primary breast cancers will return in another spot. Most often the spread is to the liver, lungs and bone.And here is the definition of stage IIIa breast cancer, from our very own website:
Stage IIIA describes invasive breast cancer in which either:
- no tumor is found in the breast. Cancer is found in axillary lymph nodes that are clumped together or sticking to other structures, or cancer may have spread to lymph nodes near the breastbone, OR
- the tumor is 5 centimeters or smaller and has spread to axillary lymph nodes that are clumped together or sticking to other structures, OR
- the tumor is larger than 5 centimeters and has spread to axillary lymph nodes that are clumped together or sticking to other structures
And, the definition of stage IV:
Stage IV describes invasive breast cancer in which:
•· the cancer has spread to other organs of the body -- usually the lungs, liver, bone, or brain
"Metastatic at presentation" means that the breast cancer has spread beyond the breast and nearby lymph nodes, even though this is the first diagnosis of breast cancer. The reason for this is that the primary breast cancer was not found when it was only inside the breast. Metastatic cancer is considered stage IV.
So.....my opinion is that your doctor is using the term "metastatic" a little erroneously. Now of course, I'm not a doctor but from everything I know about this, and I researched a *lot* when I was diagnosed, you can't have metastases and still be stage IIIa. It does not sound from what you have told me that you are anywhere near the point of simply trying to extend your life as long as possible!!!
As far as PET scans go, yeah, they're pretty expensive but if you want one, ASK for one. Make them do it!! The thing you need to know though is that it won't show anything in your brain. Usually they just scan from the neck down. If you're worried about your brain then an MRI is probably what you need. Ask your doctor. Don't put up with any crap! If she's not there, then there is surely someone filling in for her or on call that you can talk to and you should absolutely do that. I've never, ever heard of a doctor being away and nobody taking care of their patients for them. That would be something I'd be reporting to the medical board if that happened to me, you can bet your life.
So after this long spiel (lol!), I hope you have some more hope!! If you're diagnosed at stage IIIa you can be just as hopeful for "cure" as the rest of us!!
Love and prayers to you!
Alyson
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Thanks Sue and Aly. That is what I was clinging on to for so long until going into the Tykerb sight and read up on this. They write that "Metastatic breast cancer by definition is cancer that has broken away from the original (primary tumor). It entered the bloodstream or lymphatic system, and spread to organs outside the original tumor site". So did I read this wrong? Is is entered into the bloodstream or lymphatic system AND spread to organs outside the original tumor site? Not just entering the lymphatic system? No she had NO doctor take over for her. Only the nurses were there to answer or talk to.
For me I went on that train ride today and enjoyed it so much. Last night I literly called upon the angels of God to lift me out of the pit of dispair I fell into so I could go to sleep. Tomorrow is the round of blood work, the steroids, and Tuesday is the big chair day, Wednesday I go back for more fluids and the shot. Thursday I should begin to feel pretty crudy and Friday go down. Not looking forward to it AGAIN, but I will keep good thoughts and let the poison go in the cause havic with the cancer cells and smack them around a little bit. I will go on.
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Hi Brenda. Yes, I believe you are very probably correct in what you said. To me that definition means not just that it's sitting in your lymph nodes, but that it has ALSO spread to remote locations (liver, lungs, bone, etc.) by way of either your lymph nodes or blood stream. Anybody else want to chime in on this? Maybe by technical definition they can call this metastatic cancer because they found some in your lymph nodes, but the way you were obviously thinking of it was that you were terminal and that they would just be trying to give you as many years as they possibly could and at stage IIIa you're not there yet!!!
Your lymph nodes are designed to catch the cancer cells and keep them from spreading to the rest of your body. That's their job. So, even if you have lymph node involvement it doesn't necessarily mean it has gone anywhere else. From the sounds of your bone scan, etc., your cancer hasn't gone anywhere else that they can see. Again, I'm not a doctor (did your doctor say you were a terminal case? I'm thinking probably not....) and I'm just going off of what you have told us, but it doesn't sound to me like you have a terminal diagnosis at all. I just watched my friend with stage IIIa breast cancer get the "all clear" and she had a 7cm tumour in her breast and lymph node involvement and from all appearances, she's going to be just fine. I hope very much that you will be too!!I think both you and I need to stay off the internet. There's too much crap up there and we scare ourselves way too easily.
Aly.
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Dear Brenda,
I am so sorry that by sending you the information on Tykerb that you were exposed to ambiguous information that caused you despair and pain. I hope that hearing about the development of this drug and others like it -- and the use of Herceptin gives us hope. I also hope that your doctor is back this week for you and that your questions are properly answered.
As you know, I'm sure, at first, Herceptin was approved only for advanced disease (Stage IV), and we -- you and me and our BC.org friends -- would not have received it a few years ago -- as we are now, but because of clinical studies, we are now able to receive this treatment. So reading about Tykerb right now -- as it was with Herceptin in the past, the information shows it being used for metastatic disease only. I sure hope that we see researchers become successful enough to move many drugs up to the point where there is a vaccine against all kinds of cancer and treatments won't be necessary.
I truly hope this week goes easier than the others. You are so dear and I'm glad you enjoyed the train ride today.
With LOVE, Bethany
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Thanks guys and you are completely right Aly the Lymph Nodes are to catch infection as well as the cancer cells and that is what I am focusing on now...that they are corralled there and being hammered down to nothing. You are such a wonderful friend to re focus me on that. No I put myself on the terminal list not the Dr.. Thanks and Beth I wanted to go on that sight and no way did you cause distress...I did that all myself. I didn't know Herceptin was was stage IV first. Great we can get it and that shot they are working on now for a vaccine. I think I was just stressing out with the Onc away so long and I do intend to address that on Tuesday. Beings we can't have a photo gallery in here I think I will repost my picture to show you all me and hubby on the train today. One way to show you...lol
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Brenda;
There is actually a photo gallery in this site. Scroll up to the top of the page. On the upper right hand corner, there's a menu bar that says "Jump to a Forum". If you look way down, you'll find one called something like "After Treatment and Beyond". You'll find a topic called "CyberSisters Photo Album". You could post your photos on there. Just tell us when you post and we'll take a look. I'd love to see it. Bless your week with positive thoughts and minimal SE's.
Shelby
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I have a face now!
Rads #9 down today- almost to the double digits!
Kristy
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Kristy my dear:
I'm sure you always did have a face. But the difference is that now we get to see it. And what a glowing face it is. (Hopefully not "glowing" from radiation exposure...just kidding.)
Shelby
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Treatment #6 locked and loaded!! The last of the nasty stuff! Woo-Hoo! I'm absolutely exhausted and heading for the sofa. Hope you are all doing well.
)Aly.
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Aly:
Congrats! I'm soooo stoked! It's so fun to see the girls I started with getting done! Happy day!
Shelby
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Aly: Woo hoo! Get over these SE's, and you're over the bridge from Camp Chemo to Camp Recovery. Congratulations.
Brenda: I hope that you're feeling better and have climbed out of the pit. Some of the older information on the web about Herceptin still states that it's only given to Stage IV patients, but we all know better. Treatment for our form of bc has made such rapid progress that many statistic and much information are outdated and no longer apply to us.
Thanks for the pictures, Brenda and Kristy. I know that I need to post one and show off my peach fuzz!
Have a good night, everybody.
Sue
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