HER2 Positive-anyone 10 years out?
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Dianne -- My BF has an aunt who is a dear, wonderful person. She sent me a bracelet from a foundation that was formed to honor a woman who, according to the flyer that came with the bracelet, and I quote loosely: "did everything she could to fight BC and died anyway" -- I burst into tears when I saw this. I know this aunt meant only good things in sending me this gift -- but I will not wear the bracelet (except when I see her now and then). I think to her it symbolizes the good fight. To me, a lost fight. I will not lose this fight. I don't want a symbol of a lost fight. I thanked her and did not tell her how I really feel.
I have to say that it's precisely because I do NOT want people to define me as someone who has or had cancer that I have told very few people. Re: my wig... I tell them I had my hair straightened (and since the wig has bangs, people buy it... as I look different with bangs). If I'm tired, I am tired -- no one's business why. Etc.
Sher -- I actually have said the same thing (to those who know). It's a good answer and gets the word right out there. I remember when I was first diagnosed I called my GYN's office to get some info and the woman who answered was using her usual, perfunctory voice and then when I said it was me, her voice suddenly shifted to that deeply concerned voice and said "How are youuuuuu?" -- dragging out the u in you. I said: "Oh that's the I'm sorry you have cancer voice, isn't it?" She laughed. After that she didn't do that again... just was a real person. I think people mean well... and are just trying to let you know they care; but as soon as you let them know you just want them to be themselves, they are relieved and ARE themselves.
Lilah
Edit: and of course I reserve the tears and the fear and the real feelings for my BF (he is so lucky
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tuckertwo - boy did you make me feel better telling me you know some that did not get to finish the herceptin and they are doing fine!!!! I see you say you got 16 of herceptin. Is that the standard in BC?
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Sher,
Exactly! Stupid sums it up. Of course, I should try & remember the dumb things I probably said to people about this before I was dx'd. No one can possibly understand unless they have gone thru this. I don't want to be called a 'survivor' either. I think that's dumb. If I'm here it's not due to anything I personally did and if people could see me in one of my ticked off moods because of this dx, they would not say I'm a survivor !
I'm just coping as well as I can, I mean- what else can any of us do? I was talking to a lady who owns a health food store the other day, and she was saying that cancer is curable and that the pharmaceutical companies and cancer agencies want to promote fear because they get lots of money that way. That seems to be true. The Big C is no more of a bogey man than any disease. I don't hear diabetics or epileptics being called 'survivors' and their condition is usually not curable.
Also I think it's BS to expect anyone who's dealing with this to be on a positive, upbeat note all the time. Ain't possible. And it didn't 'make me a better or stronger person' or 'appreciate life more' either. I was doing that just fine before, thank you!
Anyway, that's my rant for the day. Sorry if I got carried away
tuckertwo -Dianne
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Hi blondie,
To answer your question - 17 is the standard here in BC and probably the rest of Canada but I didn't finish the last one. My onc said there was really no compelling evidence to show 17 was better than 16, and as I said, many women in the study where they were doing 17 treatments of herceptin did not finish. There is no ideal number, as the docs simply don't know the optimal number of treatments. Who knows, it might be that a few tx's do the trick. I know several ladies who have her2+ and they didn't do anything - no chemo, no herceptin, just AI's and they are doing well 5+ years out. Not saying to not do Herceptin, just don't freak out if you can't finish! My friend had to quit herceptin because she had Adriamyacin along with herceptin several years ago and got temporary cardiac problems (she's ok now)..her sentinel lymph node had a 2 cm positive her2+ tumour! She is doing well.
Keep the faith
tuckertwo
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Just got back to this thread MMM,,,so sorry not to have seen it sooner!
Yes, I had a great deal of pain with my AIs..I wont lie.I am now weaning off the pain meds I have taken for 4 years as I decided to quit the AIs a bit early.
Anxiety for every ache and pain,YOU BETCHA!, but by all accounts we are so very lucky we were Her2+.
In time you will adjust to the "new normal you" and think about the cancer a lttle bit less as the years fo by..
Oh, I did AC/T dose dense then Herceptin was approved (for early stage disease) just as I finished..so I did a year of weekly vitamin H.
gentle understanding hugs,Marcia
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Hi,
I also was recently diagnosed, and am on TCH every 3 wks for 6 cycles, then surgery - not sure what kind yet, Rads, and more Herceptin every 3 wks to complete a year.
When I found out, all I remember the dr saying was this was very aggressive type of cancer, but also highly treatable with the Herceptin. I was very nervous about the size, as this thing grew almost 1 cm between diagnosis and when the first treatment started. Based on this thread, and the long term survivors who keep popping in with there updates - feel alittle better now that this thing can be beat!
Most insensitive thing someone has send when they found out - well that fact that I never had kids so that is why I got breast cancer. Second to hearing them tell me about all there friends, family members who have had cancer...blah, blah, blah.... Basically stopped telling people now.
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I need a good way to tell people I dont want to talk about it without hurting their feelings- I mean some really nice people who are really concerned for me- BUT eating dinner out with dh, night out, kids at an activity and some friends join and spent the entire meal questioning me about my health, treatments, side effects etc. She is a good friend and very sweet but it was my night out and I really didnt want to talk about that. Im NED, in a clinical trial, working fulltime, raising kids, back to life and doing lots of interesting things!!!!!
Kristy
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Kristy -- best thing you can do is just tell your friend what you want... tell her how you appreciate her concern and maybe make a date to see her and fill her in (if she truly wants to know what's up). And if it happens again in the future I'd just lean over, squeeze her hand in friendship, and say: let's talk later. She'll get it.
Woo hoo on being NED!
Lilah
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Blondie,
I am new to this site and find everyone's story very inspiring! I was diagnosed with bc in October 2009 (with one positive lymph node). I had 4 chemo treatments of Cytoxan & Adriamycin (last treatment was 12/11) and a lumpectomy on 1/8. The pathology report came back and they didn't find any cancer in the breast tissue they removed or the lymph nodes. Now I go back to finish 12 more chemo treatments of Taxol and Herceptin (weekly basis), before 6 weeks of radiation. I'm scheduled to take Herceptin for one year. My question is...did they combine your Adriamycin and Herceptin or did you have one first then the other? I visit my medical oncologist again on 2/5 and want to make sure I ask the right questions.
Thanks!!
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CMT - another St Louis person! Where are you being treated? I just started treatment on 1/13. #2 is on 2/3 - Siteman Cancer Center at Barnes.
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Hi Stlcardsfan! I'm being treated at Missouri Baptist. I really like the doctors and staff. Barnes is also an excellent hospital. In fact, I just learned that Mo Bap is part of BJC.
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CMT -- Usually it's Adriamycin and Cytoxan together.. followed by Taxol and Herceptin. I had AC dose dense 4x (once every two weeks). Then had Taxol and Herceptin. Taxol also was dose dense x 4... since I receive Herceptin once every three weeks, I only ended up having both Taxol and Herceptin at same time twice. Finished all the chemo November 9 and continuing with Herceptin every three weeks until next September (taking Herceptin for one year, once every three weeks). I don't think they give Adriamycin and Herceptin together because both can affect the heart... so it makes sense not to deluge the heart with both at once.
Cheers,
Lilah
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Thanks Lilah!!
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CMT - Yep Lilah is correct. I think my treatment was a little different than hers though. I had 4 doses (1 tx every 2 weeks) for a total of 8 weeks of Adriamycin and Cytoxan. Then I went on to have Taxol and herceptin weekly for 12 weeks, then herceptin alone every 3 weeks until the end of December. The one in January is the one they counldn't give me as my ejection fraction was too low.
Just saw the cardiologist and not too happy with him. He just kept saying it was from the Adriamycin. Though that may be partly true I think it is possibly from having both the Adriamycin and herceptin and that it is noted that lots of time your ejection fraction will go back up if it is from the herceptin. I guess we will see how the next couple weeks goes.
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Blondie -- good luck with the healing. Hope your ejection fraction restores! I'm not sure why some docs choose the weekly taxol/herceptin over the DD Taxol and Herceptin every three weeks... but if it's true that the the EJ goes back up when off Herceptin, I wonder if every three weeks is safer? (But I'm just guessing). I personally am grateful to have the Herceptin (on any regimen).
Lilah
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Lilah - thanks, I also am grateful to get the herceptin and am hoping that the lower ejection fraction was caused by the herceptin and not the Adriamycin so that there is a good chance it may go back up. I guess I am having a stress test next week which takes 4 hours. Not sure why it takes that long but I am not looking forward to it.
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Well, I was diagnosed last year with stage 2 Her2+, 33 years old. Life is just full of surprises, huh? I endured all that yucky chemo AC/Taxol, radiation, and now just getting the herceptin infusions every 3 weeks. I'm really interested in learning about other Her2 survivors because I guess I just need the hope that I can survive this- I worry all the time!! Just had an ultrasound and mammo last week and the results were good.
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Good luck with the stress test Blondie. I think it takes that long because they inject you with something and then you have to wait for it to circulate... I had a stress test a few years ago and there was a lot of waiting around involved (not 4 hours of running on a treadmill
Hi Joni! I find I have started worrying more since the chemo ended... I can only imagine what I'll feel when I'm done with Herceptin!
Lilah
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Hi,
I.m Hers2 pos and are 11 years + from original diagnoses. I had a sentinal node and lumpectomy and was free of cancer for seven years. It came back in my liver and has since gone to the bones. I.m on Abraxene, Herseptin, and Zometa. They tried Tykerb & Xeloda but I did'nt respond and they made me really sick. I'm doing OK but am tired and sometimes dizzy.I'm still here!
Glady
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Hey Gladys-
So glad that you are!! Wishing you all the best with your new treatments!
Sending positive thoughts and hugs your way!
Just-Sher
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Lilah - thanks for the good wishes. Unfortunately they still cannot tell for sure that something isn't going on so I believe next step is heart catheterization. I still feel like I am moving backwards most of the time instead of forwards now these last few weeks.
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I was diagnosed in Jan of last year and next week with be one year since they got clean margins with my lumpectomy I was scheduled to do 12 weekly taxol with herceptin every 3 weeks. The neuropathy from the taxol got so bad I had to quit after nine but I have continued the herceptin every 3 weeks and have 2 more left. I will finish on March 16. I have had a lot of joint pain from the herceptin, but from what I have read most ladies who have had this as an SE say that 90% goes away within 4 to 6 weeks of completing the herceptin. I have had an echo every 3 months since I have started. I had 37 rads. When they did the CT to set up my rads they saw nodules in my lungs. Had another detailed CT which showed nodules on thyroid and in right lung.. insurance refused a pet scan so they did a bronchoscopy of lung and nothing showed as cancer. I am having a follow up CT after done with herceptin to make sure nothing has changed in lung. The thyroid they did an ultrasound and biopsy on and I have a goiter and one cyst. Nothing had to be done with either at this point unless something changes. They will do another ultrasound in a year. I am glad to be finally able to see the end of treatments and fewer visits to doctors.
Also there was a test run in finland with herceptin and it was given weekly for 3 months and the results for it show similar results to what we get for one year, so someone who has to quit early still may have had enough to do what needed to be done. Dr Slaymon who found herceptin says the only reason they do 1 year is that is the time set for the phase 3 testing when they were trying to get it approved, and they had no idea what time period to put on the testing. 1 year was just the choice that was made. He readily admits that less might do as well , but there has not been enough study at this point to know exactly what the optimum lenght of treatment is. I am grateful it exists. Best Wishes to all of you. Annette
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Annette - congratulations for making it to your anniversary and woo hoo on the end in sight! Sorry to hear about the nodules but glad it was nothing. I too am grateful for Herceptin!
Blondie -- so sorry the tests weren't more decisive. Stay strong. They'll resolve the issue and you WILL move forward.
Lilah
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NanaA - thanks again for reminding me about the Finland study (though I know it was a small study). Also thanks for explaining why they chose a year. Really helps since I am not sure if I will be able to get any more herceptin.
Lilah - Thanks for being there right now. I just need to get off this roller coaster, make it stop, and go the right way, hopefully that will be soon.
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>>Dianne -- My BF has an aunt who is a dear, wonderful person. She sent me a bracelet from a foundation that was formed to honor a woman who, according to the flyer that came with the bracelet, and I quote loosely: "did everything she could to fight BC and died anyway" -- I burst into tears when I saw this. I know this aunt meant only good things in sending me this gift -- but I will not wear the bracelet (except when I see her now and then). I think to her it symbolizes the good fight. To me, a lost fight. I will not lose this fight. I don't want a symbol of a lost fight. I thanked her and did not tell her how I really feel.
Lilah,
I had to respond to this to lend you support. It reminded me of 10 years ago when a friend of my parents took me to lunch and regaled me with the story of how a friend in her youth had died of cancer and looked "just awful" toward the end. I sat there, frozen -- I couldn't believe she was relating this story to a woman sitting across from her with a cloth on her head and no eyebrows (me!).
Another friend thought, now that I was a bc survivor, I would want to get up at 6 a.m. on Mothers Day to do the bc walk in Philly. I did it one year; I'm grateful for the women who walk; but, back then, I felt my years were numbered and I wanted to spend Mothers Day at home with my kids. I also hated, after awhile, the pink shirt. I felt like it branded me.
Gabrielle
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LOL Gabrielle re: the pink shirt. I have to say I was in the midst of chemo when BC Awareness month was happening this year (Oct) and all I could feel was: I am all TOO aware of BC thank you. I appreciate those who fight -- VERY much -- but do agree that being a "pink warrior" means something much different when you are a BC fighter/survivor.
Thanks for sharing
Lilah
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Nana, Yes, they are still trying to figure out the best dosage and timing for herceptin. I went to a breast cancer symposium with my onc this last past weekend, and Dr. Slamon was one of the speakers. He said we already know herceptin works, and it works well. He said it shows across the board that size, nodes, LVI, doesn't change that--it works in all the sub groups that are HER2+. He kept saying herceptin is now in a "clinical optimization" phase. He said the same thing you said in your post--One year is just what they chose for the study and have just stuck with it because it worked. He said, what we don't know is if less or more time is better, worse or the same. We also don't know if giving herceptin with less chemo (there's already been studies that show it works best with chemo, so no chemo isn't really an option at this point, but certainly less chemo and/or less toxic chemo is still being looked at) will be as effective as the main ones we use now. He kept stressing that all of our current data are coming from daily updates from the women who started these trials 5 years ago. Data results usually don't happen this way, but in the case of herceptin, because of it's overwhelming benefits, exceptions have been made. It's kind of scary for us because it just stresses the fact that they really don't know! But, I'd much rather be in our position than the gals who were HER2+ ten years ago when there weren't many options.
There was also a doctor there who was part of a "debate" on whether or not herceptin should be routinely given to stage 1 HER2+ women with node negative disease. The "yes" side of the debate used all the data we are so used to hearing about--that it works and saves women's lives. .. But the "no" side with this doctor was really interesting. She seems to think that the possitble long term toxicities (of course we don't know the long term toxcities since it is on a day to day basis with the current trials!) and other inconveniences (including cost) lead her to be much more choosy on which women she gives the yearly herceptin to when they are smaller than 1 cm and node negative. (Mine was 7mm and the whole time she was talking, I was thinking, boy I'm glad she's not my doctor!) She said it's not the herceptin itself that is necessarily the problem, she seems to think the heavy duty chemos that go along with it may be more to blame. She favors looking at less chemo or less toxic chemos to accompany herceptin. Until we have more trials, we won't know if we are overkilling with the big guns of chemo we use now. Also, she is speculating (no hard core evidence, just one of her observations/theories) that herceptin might be somehow affecting the risk of relapse that occurs in HER2+ women in the year following the herceptin treatments. She showed us those same graphs that Dr. Slamon has presented and showed that there is a significant drop off in the graph between years 1-3. She wonders if herceptin has something to do with this. I guess in some medicines, when they are stopped, there is sometimes a tumor rebound phenomenon. (Again, there is no proof of this with herceptin, this was one oncologist's speculation.)
Bottom line, we won''t know anything more (and neither do these specialists!) until more studies are done, and there is more long term follow up. That info won't be available for us to use. Our time is now. We have to do whatever they currently think is best, even though we know it will be fine-tuned and changed in the future.
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Wow Weety I do not know how you kept yourself from saying something.
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Wow Weety TY so much for that report. I wonder if the recurrence rate in patients 1 - 3 years after Herceptin has been compared with the same time period for women who have not received it (so 2 - 4 years after chemo or other treatment sans Herceptin).
Lilah
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I am actually in a trial right now that is 12 weeks of Taxol and Herceptin and then Herceptin every 3 weeks for the rest of the year. I had a small node negative HER2+ tumor. The study is looking at side effects and to see how effective this chemotherapy is in stopping reoccurance. It is supposed to be a "well tolerated" chemo. I just finished #5 out of 12 and I feel pretty good. The hope is to find a less toxic chemo combination for women with small node negative HE2+ tumors while still getting the benefit of chemo and Herceptin.
Kimbers
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