Stage II w/Lymph Node Involvement
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Welcome Tracey...thanks for the info on the Vegas Trip! It sounds so fun. How many of you gals went last year? Where did you all stay at?? I would love to do it if one of us can find a job here in Detroit...the land of no jobs!! arrrgghhh Stayin positive that God has a plan here for us..lol
PS I am a HER2 sister, too!!
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Sending you all good wishes to find jobs Warrior... that is, I'm sure, stressful enough and then to have the BC well... I feel for you.
Lilah
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Thanks Lilah! I keeping looking UP when I want to look down!
HAPPY VALENTINES DAY WARRIORS!!! ENJOY YOUR WEEKEND! XOOOXXO
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Hi all. I am a bit of a lurker. But I always have been kind of an observer and shy. Anyway, I want to wish you all a great weekend and Valentine's Day.
Cyber Hugs.
Mandy.
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Thanks Mandy, and I second that, Happy Valentine's Day!
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HELLO WARRIOR!
LAST YEAR I WOULD SAY THAT ALL TOGETHER I THINK THERE WERE CLOSE TO 30 OF US THAT WENT TO VEGAS.IN FACT MY PROFILE PIC WAS TAKEN WITH A FEW OF THE LADIES IN VEGAS. IM THE CHOCOLATE ONE. LOL!! IT WAS SOOOOOOOOOO MUCH FUN!! WE STAYED AT THE MIRAGE RIGHT ON THE STRIP. I AM SENDING PRAYERS YOUR WAY ABOUT THE JOB SITUATION! HEY I SEE YOU WERE HER2+. HAVE YOU HEARD ABOUT THE NERANTINIB TRIAL?? IT IS AN ORAL PILL TO BE TAKEN FOR A YEAR. THERE IS A THREAD HERE ABOUT IT. I AM WAITING FOR IT TO OPEN BACK UP. IF YOU HAVENT DONE SO, CHECK IT OUT.
HAVE A GREAT WEEKEND LADIES!!!
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Tracey -- is that Nerantinib trial something to take AFTER you finish Herceptin? (I am also HER2+)...
Thanks!
Lilah
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YES INDEED LILAH!!
IT IS AN ORAL THERAPY THAT HAS SHOWN ALOT OF PROMISE FOR HER2+ WOMEN. YOU TAKE IT FOR A YEAR. THERE IS INFO ON IT WITHIN THIS WEBSITE. I AM HOPING TO BE ON IT BY NEXT MONTH....FINGERS CROSSED!! I HEAR IF YOU GET THE REAL PILL AND NOT THE FAKE ONE THE SIDE EFFECTS ARE WEIGHT LOSS AND DIARRHEA.
THERE IS AN ACTIVE THREAD ON IT HERE SO CHECK IT OUT.CANT WAIT TO MEET YOU IN VEGAS LILAH! IM SOOOOOO GLAD YOU ARE JOINING US!!!!
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Aw TY Tracey! I am looking forward to meeting you as well! It IS going to be a blast
And thanks I did look that thread up and read about the trial after your post. Very interesting. I'm on Herceptin still til next September so it may be too late for me to join the trial... but I am going to ask my Onc about it anyway. Sounds very promising!
Lilah
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No, Lilah, I doubt if it will be too late. It is quite a large study, and when I talked to a facility that was hosting (not sure of the right word to use there) it, they thought it would take quite a while to fill up. I'm done with my herceptin treatments this summer, also, and she was pretty positive it would not be anywhere close to filling up by then. My onc just wants me to be choosy about a trial, because she says in most cases, you only get one shot at a trial, and once you are in one, it pretty much closes the door on all the others that come out. I know there are some exceptions, but I guess that 's something to at least consider. Anyways, I'm like you, I've got quite a few months longer to wait--maybe something else will open up for us early stagers in the meantime. . . and then we would actually have a choice! Wouldn't that be nice!
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Indeed it would Weety! Well thank you for that info... I see my Onc next in March, so will ask her what she thinks then (she is my god
But it's good to know that it's an option! I am concerned about the issue they are attempting to treat (a possible increase in recurrence rates in that first year after Herceptin -- oh great is all I can say, something else to worry about).
Lilah
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Yeah, it makes me think (to myself of course!) that they are almost expecting it to come back!!! And that scares the heck out of me. The trial nurse I talked to told me this study will be quite difficult too, in terms of data collection, because of the low recurrence rates of herceptin treated women already. She said that for every 100 women enrolled, only about 10 of them would have had recurrences anyways (that's one reason why I think my onc isn't too excited about this trial--she thinks it is treating too many women for nothing, as their disease will have already been "cured" by the herceptin or surgery or chemo), and if this drug does the job it's expected to do, even fewer than the 10 would have recurrences, so basically, they will not have a lot of events to go on. I think that's why it is quite large (I think I read over 3000 women) But most of the data on our herceptin treated cancer (so far presented) shows most of the HER2+ recurrences happening before the 5 year mark. I keep telling myself, if I can just get to that, then maybe I can relax a bit! It sure is a loooooonnnggg time from now, though! Until then, I think anxiety has become my worst friend. I'm so tired of worrying, and I'm only just done with chemo! I can't imagine having to worry for almost 5 more full years!
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Weety -- I hear you. I am still on the Herceptin, so feeling protected yet. I am sure my anxiety level will rise once that treatment comes to an end and I, like you, count the days to the 5 year mark. I live in a state of denial for the most part; it seems like the only way to go on. I feel I have done all I can do and while I keep my eyes and ears open for ideas on anything MORE that can be done... I don't know what else to do but live as if I'm cured (albeit taking the best possible care of myself and my health). The alternative -- living in a state of worry -- does not appeal.
Lilah
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WEETY, GIRL IM WITH YA ON THE WORRY!! ITS LIKE I TRY SO HARD TO STAY POSITIVE AND I KEEP HEARING MY DOCTOR SAY "TRACEY YOU HAD A TOTAL RESPONSE TO CHEMO!" I CAN ALSO HEAR MY DOCTOR TELLING ME THAT HER+ IS NOT THE MOST AGRESSIVE BECAUSE HERCEPTIN NOW LEVELS THE PLAYING FIELD. BUT ITS HARD!! SOMETIMES THE MIND CAN BE OUR WORST ENEMY. EVERYONE KEEPS TELLING ME THAT IF YOU KEEP THINKING THAT ITS GONNA COME BACK THEN IT WILL!! BUT IM LIKE HOW DO I STOP JUMPING TO CONCLUSION AT EVERY LITTLE PAIN!!??? UGGGHHHH!!! SO EVERYDAY I FIGHT TO TRY AND STAY POSITIVE, I AM HOPING THAT I CAN TRAIN MY MIND AND EVENTUALLY POSITIVE THOUGHTS WILL JUST COME NATURAL! DOES THAT MAKE SENSE??
LILAH, WHEN I FINISHED HERCEPTIN LAST SUMMER I WAS SOOOOOO DEPRESSED!! I FELT LIKE A SITTING DUCK! IN FACT I BEGGED MY ONC TO LET ME STAY ON IT FOR ANOTHER YEAR! SHE SAID ABSOLUTELY NOT! SHE EXPLAINED THAT HERCEPTIN IS NOT MEANT TO BE A LONGTERM MAINTENANCE DRUG FOR EARLY STAGE BC. IT IS JUST SUPPOSE TO KNOCK OUT STRAY CELLS THAT CHEMO MAY HAVE LEFT BEHIND AND BEING ON IT FOR A YEAR IS GOOD ENOUGH. ITS A STRUGGLE TO BELIEVE THAT BUT I AM DOING THE BEST THAT I CAN! THATS WHY THESE BOARDS ARE SO IMPORTANT! SISTERHOOD IS AMAZING!! IT IS HEALING!!!
DID YOU HAVE RADIATION?? I DID NOT. I WENT TO A INTERNATIONALLY KNOWN RADIATION DOC TO GET A 3RD OPINION AND HE FELT THAT SINCE I HAD RESPONDED SO WELL TO CHEMO AND I ONLY HAD 1 NODE INVOLVED THAT IT WOULD ONLY IMPROVE MY SURVIVAL RATE BY LESS THAN 1%. AND WITH THAT HE RECOMMENDED THAT I NOT HAVE RADIATION. SO I DID NOT. AND I CONTINUE TO 2ND GUESS MYSELF ON THAT DECISION. BUT HEY YOU CANT LOOK BACK RIGHT!? ANYHOW I KNOW I SOUND LIKE A CRAZY BAG LADY RIGHT NOW BUT I SAY AAAAALLLLLLL OF THAT TO SAY THAT I AM SO MUCH BETTER MENTALLY THAN I WAS WHEN I 1ST FINISHED HERCEPTIN!! YOU MAY FEEL A LITTLE EMPTY WHEN YOU FINSH HERCEPTIN BUT IT WILL GET BETTER.
OKAY I AM DONE RAMBELING! LOL.....THANKS FOR LISTENING LADIES!!! WARRIOIR, THANKS AGAIN FOR SUCH A GREAT THREAD! GOOD NIGHT LADIES!
TRACEY
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Hi Girls and WELCOME TRACEY!! Lots of great info exchanged over the last few days. I have heard of the Neratinib trial. I live in Metro Detroit and NONE of the area is participating, including Univ of Michigan,which always does if it is a good study. There is only two small areas up north of here about three hours. It would be difficult to drive back and forth. I am er and her2 positive. I am on the Boniva part of the trial for my my er part of my cancer.
I so understand the feeling of being left alone after treatment. I wrote a poem about some of those feelings..lol..shock. I referred to it as our safety nets being removed...Don't worry, girls, as with all things...THIS TOO SHALL PASS. Its hard work but there is ONE thing we can control and its our thoughts..either you can choose to let the Devil paralyze you with fear or let God give you inner peace. Trust me, I have plenty of days where I have to work real hard to get rid of that red little guy, but I do. You have to catch yourself. Please know that if you feel that way, you can come here and share. Sometimes knowing it is normal helps!
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Tracey -- I'll let ya know how I feel when Herceptin ends. I do know that while I am mostly very upbeat and try not to dwell on worry, I did worry more about a month after chemo ended (and SEs mostly subsided and I was like -- ack!) But don't get me wrong: DON'T want more chemo! So I'll prepare for end of Herceptin next summer. I think you have to just decide you've done everything and stay focused on healthy choices going forward. And no I did not have radiation either -- same story: I responded very well to the chemo AND only had the one node, so it was not recommended for me. I worry about that every now and then but then I am happy not to have to deal with the radiation issues... so it's a mixed bag. So I revert back to my advice here: I decide I've done all I can and look forward to normal. (Right now that means: finishing breast reconstruction and growing enough freaking hair to stop wearing this wig!)
Ladies -- hope you are all feeling good or looking forward to feeling better soon!
Lilah
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LILAH I THINK YOU ARE AWESOME!! THANKS FOR THE WORDS!!0
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Aww thanks Tracey!
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I'm due to finish herceptin in May and I like to think I've done everything possible to prevent recurrence and think of Herceptin as my wonder drug, but does it work for everyone?
I'm too scared to ask my Onc if he has seen many recurrences now we have Herceptin for Her2+ early BC...........just wondering if anybody knows how many women have a recurrence?
I'm not worried by something that may never happen and life is really great again but I'm thinking I maybe in lala land thinking Herceptin means no more BC worries in my life - I'm 39!
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Hi Girls..
Please make sure you follow the thread An Asprin A Day......
Something as simple as an aspirin has shown to prevent reoccurance!! Check it out..I am going to take my aspirin now...lol
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Dear LouLou and Lilah and anyone else on Vitamin "H"
Just wanted to let you know that I am 5 years & 2 months out. I have a similar profile to yours and wanted to give you some inspiration and HOPE! I completed Adriamycin/Cytoxan dose dense,Taxol dose dense and THEN Herceptin was approved for "early stage". I did Herceptin once weekly for 1 year. It was odd to be done after 16 1/2 months of chemo, but as the days grew into months ..and then years...I began to BELIEVE it will be OK..you will get used to not going to the Onc so much,LOL!
gentle hugs,Marcia
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Hi ladies,
I 'm stage 3 a. I sometimes wonder if the suregeon got all my nodes out at the time of my surgery. I had a lumpectomy initially and within 1.5 week had second surgery -mastecomy -as I did not have clear margains. The surgeon initially began with a SN (node removal) but at the time of my first surgery he saw that the other nodes looked affected and were clustered together, so he elected to remove them. Guess I sometimes wonder because 8/8 were cancerous. But I noticed on this website many woman have nodes that were removed and were found at the same time as affected ones NOT to be affected. Guess I would have felt better i.e 8/13, etc...I sometimes worry that there may have been more that were not removed, that could still be cancerous!
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Marcia -- thank you! SO good to hear and may you stay NED forever
Frankie -- did you also have radiation? That would help. Also I hope you are on Herceptin!
Warrior -- I thought it was just hormone positive women that aspirin benefits? (I was taking aspirin a day for years, by the way, before I got BC -- have been off it due to all the surgeries but plan to resume -- for my heart -- in June). I also read that Ibuprofen is also beneficial.
Lilah
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Hi, this is my first post but I've been reading different discussions since my diagnosis and appreciate all the advice and kind words shared. I am 48, married, no kids, no family history and some days I'm still shaking my head over my diagnosis and wondering how I got here. I'm healthy, I exercise regulary, I don't drink and I stopped smoking 10 yrs ago. I had lumpectomy and SNB 1/4/10. All 3 sentinel nodes removed had cancer. I had axillary dissection 1/28/10 and of the 14 additional nodes removed, none had cancer. I'm going to be starting chemo 2/26/10 with a bit of apprehension. I'll have 4 rounds of AC, every other week, with Nuelasta shot after each treatment. Then Taxol weekly for 12 weeks. Then 30 days of radiation and then Tamoxifen. I feel like I've got such a long road ahead of me, it's nice to read about others who have already done it. I have to say when I got the news about the node invovlement, I did feel as if it was a set back and the idea of chemo scared me. I think I'm coming to terms with chemo and the side effects. I feel that I've gotten many good "chemo tips"from this site. I work full time and I'm concerned about job perfornance and the fatigue and other side effects. I've got my wig ready and my hair appointment to get buzzed. I've shopped for my chemo supplies. If anyone has any words of wisdom before my first treatment, I'd appreciate it. Thanks!
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Oh well gals here I come.. stage2b with 2 nasty little nodes.. well maybe they were my guardian angels filtering out crap before it had a chance to escape hehe..
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Sorry Gin, it's tough but you'll get through it. I was unable to work after my 3rd infusion. Fatigue, constipation, acid reflux, and the loss of 35lbs.(not necessarily the best diet), but I made it. Thank goodness, I still had my job, when I got back 4wks after chemo. and one week into radiation. But that was in 08.
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In reading through some of the earlier posts on this thread, I saw that some of you had your premenstrual status come back after chemo was over. I have some questions about that--how did you know it was coming back (I know, you had a period, but what I mean is did you have any other symtoms or relief from hot flashes, more oily skin etc. . .)? Also, how long after finishing chemo did your periods come back?
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Lilah- I don't know if it was Estrogen positive woman only. When you think about it, the study was dated back to the 70's and if memory serves me correctly(which with chemobrain, it does NOT..lol) back then they didn't even test for Her2 so many of those ladies could of been Her2 and didn't even know it. I think the key is reducing inflammation. period. Its a breeding ground for many cancers. I wish I really knew the answer but all we can do is try to figure this all out together..lol
Welcome Trigeek and Ginadmc! Gina or is it Gin? lol I wish I could take away your feelings of fear, confusion and being so overwhelmed. Know this is ALL normal! Just try to take it one step at a time. Don't look at the big picture, just look at today. Or think of it this way, turn around and look how far you have come...think about where you are right now compared to the day you got "the call"....this too shall pass. In the meantime, please come here and gripe, cry or laugh. We are all here for each other!!
Weety- My cycles came back almost a year to the date that I had started chemo. I was 39 at dx. It just showed up one day..lol I did notice the hot flashes stopped and I was getting crampy. I also wasn't needing lubrication anymore..sorry..tmi..lol..Initially, we didn't know if it would just visit once, twice. Well, it is back full force like clock work. It was heavy but shorter in the cycle. I take tamoxifen, too. Hope that helps...
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Warrior517 - Thanks for the welcome! You're right - I need to go day by day. I'd rather be where I am now than where I was when I got "the call". I'm happy I'm past the surgical stuff and if I think of AC and T as a different treatment phases, it's not so daunting.
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Warrior 517, I like your poem. You are very talented! I related with most of it. I have just finished my treatment and the port is out, but I realize that I will have to fight for the rest of my life so it won't come back. I, too, had HER2+and the doctor said there is a 35% chance it will come back. Is that what you were told? I had two surgeries, lymph node involvement, chemotherapy, Herceptin, radiation, and now, am on Arimidex for five years. I am 53.
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