Starting Chemo in JAN 2007
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You're welcome, TPPJ. I imagine it WOULD feel surrreal.
You have almost the same specs as me, except I'm PR- and 2.1 IDC. But with the HER2, I think we have a little more right to be worried about the thing coming back, especially since when it returns it is metastasized. However, my onc told me that of the women who were treated with Herceptin for a year from that first big study, it's now been three years and none of them have shown recurrrence whereas half of them would have at two years without the Herceptin. Also, now if the HER2 DOES metastasize, we have the Tykerb available to fight that in an even more targeted way. That alone has made me feel a whole lot better about my prognosis, especially when coupled with tamoxifen and the newer pills. Personally, I don't think I'm going to lobby for all those scans after my treatment, since I didn't have any positive lobes either. The scans were very unpleasant for me in themselves, and didn't show any spread anywhere, so I have to believe the chemo and Herceptin will have kept anything from growing. Maybe at some interval after the Herceptin. Anyway, those are my thoughts at the moment. But I sure understand wanting to know! - Skye -
Yes, I HATE being HER2/neu+. I was initially ecstatic at my catching it so early, being ER/PR+ was all good. I must have mentally blocked out the HER2/neu part and when I did realize it, I had a breakdown. Now I hear people say "oh, it's not so bad because they have Herceptin (and now Tykerb)", but really, who wants to be HER2/neu+? If it weren't for these drugs, we'd be up the creek. That's not a fun place to go. I do get scared. I didn't realize that HER2 people's recurrences were strictly mets. I had a mastectomy and I don't know how I'd even find a recurrence in the same breast, it feels so weird (did TRAM flap). I won't lobby for scans. I'm just trying to talk myself into a calm place, seeing as though I won't have scans.
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Wow, Skye, that's so odd that you are having the nausea on Taxol. My onco. told me it pretty much wouldn't happen. They didn't give me Emend for it. I do get Decadron via IV in my pre-meds, along w/Benadryl.
Love my Ativan. I actually forgot to take it yesterday...I took Lunesta at 9 pm but it didn't totally cut it. I had such a fitful night's sleep...I wonder if it's because I skipped Ativan yesterday. Took one this am w/my coffee and I'm feeling human... as evidenced by my bazillion posts.
I was surprised by the nausea too. Maybe it's a tradeoff for keeping my brows and lashes pretty much intact, which has also surprised me. Well, as you can tell I'm procrastinating doing those taxes by posting here so I'd best bite the bullet and get at them. - Skye -
Good Morning all,
Skye, thanks for reminding us about the salt water. I am going to add it to my regime. And thanks too for the other hints re supplements.
I start taxol next week, 12 weekly. I don't know why I am so scared. I handled ac fine and am thinking it's the number 12 that is upsetting me, so am telling myself to just get thru each one. I guess all this is just getting to be a drain. I have been wearing the wig for two months and last nite realized it will probably be at least 5 more months, maybe more, until I have hair. That feels like a long time! I guess I am just in a funk. Work is busy; I am in the wholesale flower business, so Easter and Mother's Day are crazy. On the one hand, it keeps me distracted, but on the other, it all seems so trivial!
Hope everyone's day goes well. I am so happy for those of you who are done with chemo. We will all get there eventually.
Melia -
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Yes, I HATE being HER2/neu+. I was initially ecstatic at my catching it so early, being ER/PR+ was all good. I must have mentally blocked out the HER2/neu part and when I did realize it, I had a breakdown. Now I hear people say "oh, it's not so bad because they have Herceptin (and now Tykerb)", but really, who wants to be HER2/neu+? If it weren't for these drugs, we'd be up the creek. That's not a fun place to go. I do get scared. I didn't realize that HER2 people's recurrences were strictly mets. I had a mastectomy and I don't know how I'd even find a recurrence in the same breast, it feels so weird (did TRAM flap). I won't lobby for scans. I'm just trying to talk myself into a calm place, seeing as though I won't have scans.
Oh yes, you are totally right, HER2 sucks. It's supposed to be 25% of all bc diagnoses but I don't think that holds true on this particular message board, seems there are only a handful of us. I freaked when I realized (also some weeks after dx) what it really meant, too, but ... it is what it is and really, mets and recurrence can occur with any dx, or not! We all just have to go it on faith and the latest med advances. And it does help me to talk about it once in a while, I think that is the only way to process these things.
BTW Mizsissy a Michigan get together would be fun! - Skye -
Tina (TPPJ),
Here's your photo, came through bright & clear!!!
Anybody else who needs a photo posted, I can publish via my website www.lindaswift.com (send it to email address there).
Tina, the avatars are the little square pictures posted next to our names to the left of our messages. You need a picture 80x80 pixels, and you can upload it to the BC website by going to Your Home, Personal Page options....
Mizsissy -
Hi all,
I think I am coming down with something. I haven't had any cold yet, so I guess I am lucky. I will go to the Seder tonight no matter what.
TPPJ and Skye
Thanks for the encouragement about the taxol and the s/e & information that goes along with it. Going in forearmed is better. I will get some glutamine.
Robertin and Caya, I hope you are feeling better today.
I think I have to take it easy today before we leave for the Seder. This is my 6th and hardest day - so predictable. Tomorrow I have the appointment with the BS at DF. I hope she agrees with me.
Catch you all later.
Viddie -
Melia, Lynn, I contacted one of the top people at the University here (via a very positive recommendation from a 15 yr BC survivor), and they want *everything* --reports, 3 yrs of mammograms, slides, MRIs, films. Everything is going to be completely re-analyzed. So I think I'll be in good hands, and might even get a consultation by this Thursday!
Wouldn't it be ironic if I went back into chemo?!!! The idea is ghastly, but the idea of a recurrence is even more ghastly!!!!!
Thanx for the idea; I feel more relieved already!!!!
Mizsissy -
Hi,
Feeling alot better today. Took a nice long bath, feeling much less "jittery".
TPPJ and Skye I'm also Her2neu+. Caught it early, triple positive, no nodes - My onc. told me that with the latest studies (I believe the same ones you refer to Skye) my (our)prognosis has become much better. I think the stats will continue to become better as the years go by because of the Herceptin and Tykerb, and they are also working on a HER2 neu vaccine at the U of Seattle I believe.
I'm also a type A personality, but I think my onc. is too - he ordered the scans, I did not ask for them - probably because I was in a fog and state of shock then. I have already talked to him about further scanning, and he is reluctant to do anything without symptoms, as there are many false positives and the anxiety/stress is overwhelming. I am hoping that because I'll be on Herceptin through June 2008, this will really protect me and get me close to that 2 year mark where they say it is most likely to recur. So let's be as positive as we can, many are saying Herceptin is the greatest breakthrough in the treatment of BC in 25 years.
Viddie, I'm going to the seder tonight. Have fun at yours.
Skye, great that your brother is taking over your Easter celebrations. Do you make any special desserts for it?
Mizsissy, it would be nice to have a get together if possible. I'm a 4 hour drive away from Detroit.
Hope everyone is having a nice day.
Caya -
Mizsissy,
I am so delighted that you have done this! You need peace of mind ... even if it means more treatments. We can get you through it if it happens, which it probably won't. At least you will be able to sleep better after you find out more.
Good job!
Melia -
Mizsissy, I think you are doing a very wise thing just in case. The chance for early treatment...if needed...is something we can't get back.
Caya, you are so right on the need to stay positive. What amazes me is that they KEEP coming up with new treatments. We have every reason to be hopeful. On the Easter treats, I really am grateful to my brother, who has chronic pancreatitis and not always so well, himself. But his wife is a powerhouse. My kids always expect "Mom's apple pie" at every holiday so I will get one of those made. The other thing they like for Easter is "Dirt," made with oreo cookie crumbs and layers of pudding and cream cheese mixture, served in a flower pot with a plastic flower in it.
Caya I'm glad you're feeling better, wrm bath sounds good to me too right now. Of course anything sounds better than finishing my taxes....Skye -
Dr. David Nathan from Dana Farber is on NPR right now talking about all the new targeted "smart drugs" for cancer. He's talking a lot about breast cancer. He, of course, mentioned Herceptin. He's plugging his book: The Cancer Treatment Revolution.
He also said that he believes we are constantly growing little tumors in our bodies that our immune systems kill and never amount to anything. This is why he thinks that MRIs should be used very cautiously.
Very interesting interview. -
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Dr. David Nathan from Dana Farber is on NPR right now talking about all the new targeted "smart drugs" for cancer. He's talking a lot about breast cancer. He, of course, mentioned Herceptin. He's plugging his book: The Cancer Treatment Revolution.
He also said that he believes we are constantly growing little tumors in our bodies that our immune systems kill and never amount to anything. This is why he thinks that MRIs should be used very cautiously.
Very interesting interview.
Amera, what show was that...I am in NJ, and right now Fresh Air is on, and they are NOT talking about cancer drugs. THey usually post audio on their website later in the day. I would love to hear the interview. -
I kept my brows and lashes too! I just think that's bizarre! I totally expected them to be gone. As I wrote earlier, my brows went kind of light/white so I darken them w/pencil. But at least I've got them....
Melia, don't be worried about the number (12 taxols). It's much easier to deal w/than A/C and because you are going back every time you turn around for the next one, the time FLIES. It feels like I just started the Taxol. I am going for a second echocardiogram next week. I'm like "again???". Time flies when you're having fun! Ha-ha!
Misizzy...thanks so much for posting my pic. It's nice to see who you are talking with. I'm glad I found this board. I've perused this website for a few months now but no conversations grabbed me. You all seem to be totally going through the same stuff and I swear, you can only really talk about it w/those who know...
Caya, glad you are back to feeling better. And yes, I need to keep focused on the positives: thank God Herceptin and Tykerb exist. Furthermore, thank God Herceptin is given to early stage patients now. Happy Holidays All! Just got my two dozen Danish pastries to take to last chemo tomorrow. My daughter is beside herself that she can't break into the box. -
I think the stats will continue to become better as the years go by because of the Herceptin and Tykerb, and they are also working on a HER2 neu vaccine at the U of Seattle I believe.
Caya, that is a very good point. They just started giving Herceptin to early stage patients so we need to be the people who constitute the new "good stats". I didn't hear about a vaccine. Is it something we may be able to do? -
TPPJ,
Thanks for the encouragement. I don't know WHAT'S wrong with me. I was so stoic during ac and I am working myself into a real state about this. What kind of SE's did you have on Taxol? How long did the weekly infusions take each time?
Melia -
Rebecca, It was on Fresh Air. I'm surprised you didn't get it.
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Rebecca, It was on Fresh Air. I'm surprised you didn't get it.
I had the radio off for some reason, then turned it on when I saw your post. Normally I listen to NPR all day. NOt sure why I didnt today, but I will catch it later off the internet! -
It was only on the first half of the show.
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Did Dan Farber mention DCA, that drug that is going on trial at the University of Alberta (the "safe" cancer drug)??!!!
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Melia,
Taxol s/e's...virtually none. One day I had a swollen ankle but it was gone the next am. Had intermittent numbness (barely) in fingers/goes a few times. This last one my right foot was a little numb...as if I'd been sitting w/my legs crossed. That's it. And I wouldn't have taken note of it had I not been on Taxol and looking for it. -
Not to keep talking about it, but I am actually nervous for my LAST chemo tomorrow. I feel like it's the first day of school, or a job interview or something. Weird. What's funny is I had zero nerves for my first chemo because I didn't know I was getting chemo that day. I thought I was there for a regular appt. When I found out, I was like let's just get started and did it. It actually turned out to be a great way to do it. I guess it must be more nervous excitement about tomorrow. I pray they get the vein on the first try. Sucking down the water today.
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TPPJ-
I do not think it is strange at all to be nervous for your last treatment. After all, up until now you have been taking specific action against the cancer. Once treatment ends, you are on your own. I have heard that this is not an uncommon thing....and I find within my soul the fear of the end of treatment as well. Strange how you can simultaneously want something to end and not. Chemo is nasty. Blech.
Congratulations on finishing treatment nevertheless! -
TPPJ,
Everybody is nervous about their last chemo. You didn't ever think you'd get through it alive, and now you think something is going to get you at the last minute. You'll be fine. It will be over.
Mizsissy -
I'm just starting to recover from chemo last Friday so I have only been able to read through a few of the posts I've missed. My birthday celebration in the chemo room was a lot of fun. The nurses were a bit miffed that we violated their one visitor per patient rule (I had 3 plus my husband who ducked out for most of the time). Anyway - my friends from my support group here brought me a hot pink feather boa, pink crown, pink birthday girl medal, 2 doz pink roses and a huge birthday cake. We delivered cake to everyone - patients, visitors, and nurses and I had people stopping by all afternoon to wish me a happy birthday. It certainly made the time pass quicker than usual.
Just as sick afterwards though. Funny thing is usually I can't eat anything but soup broth for days after chemo, but this time I can't get enough to eat. I'm hungry all the time. At this rate I'm going to gain some serious weight for the first time in this process. There goes the ONE good side effect I had going for me.
What a way to turn 38.
I'm looking forward to catching up this week on all the posts I missed. -
Hi Ladies,
Been lurking the past few days, Been somewhat depressed. The taxol aches have hit full force and I don't know if its the steroids or what but I get so grumpy.?! Again I was told another story of reoccurrance and it freaks me out. My step-sons friends mother had BC 2 years ago and now they found 3 tumors in her neck. I get to feeling so strong then something like this happens and I feel like throwing in the towel, I get so sad. I tend to back away from my DH, my kids and family, because the guilt rears its ugly head and I want to just disappear rather then to keep putting my family through stress. Sorry to be on the bummer side of the fence. I'll try to get my act together.
Nancy -
I can't remember specifically what he mentioned except for the Herceptin, but he did really talk a lot about how the new drugs target only cancer cells. He thought that in the pretty near future, cancer patients would forgo the nastiest forms of chemo and get smart drugs that only hit the cancer cells.
Here's the link:
http://www.npr.org/templates/story/story.php?storyId=9312690 -
It would be nice to get together and CELEBRATE. Probably will have to wait until after rads though.
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I know what you're saying about the wig. It is getting really old wearing it and hot, esp with the hot flashes.
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Nancy, hang in there, it's a long, long road but we're going to get there. Steroids are known for mood changes (I have been on them for my asthma in the past so I know.) Don't be so hard on yourself. For every one setback you hear about, there are ten women out there doing well, it's just that you don't hear about them that often. People keep coming up to me at the gym (they recognize my bald head and pink breast cancer hat) and tell me how their mother, sister, aunt, etc. have survived for years and are still doing well. You just aren't hearing about those people!
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