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Pattie Mignogna
12-10-2003, 10:38 AM
Hi, I don't post alot, just once in awhile. However, yesterday I had a doctor's appointment and my doctor and I were discussing my case. She told me last year that I am considered NED (no evidence of disease). I was diagnosed with Stage IV metastatic disease in April '99. It will be 5 years since that diagnosis this coming April. I have been on Herception for almost 4 of those years. I am also taking Femara for the same amount of time. She told me that they are seeing more and more women like me and are starting to wonder if Herceptin is actually a cure for women who overexpress the HER-2Neu gene. I am just curious to know if anyone else has heard of this or if there are any studies going on the assess this. Metastatic Stage IV BC has never been cured, but she said it is almost unheard of for someone with this disease to go so long without any progression of disease. Is there anyone else here experiencing the same thing? Thank you

Jackie
12-10-2003, 11:14 AM
I don't really have anything to contribute, but just wanted to say that it's certainly uplifting to hear remarks like that! I'm so pleased for you and hope the rest of us get to experience something like you have.

christine
12-10-2003, 12:45 PM
Pattie,
Most oncologists agree that there is no "cure" for breast cancer, but if you go to our home page and click "index" then go to "stories". We have several stories of long term survivors.

The closest we have to a cure is Barbara Bradfield who was diagnosed as Stage IV in 1993.
Dr. Slammon persuaded her to participate in the phase I clinical trials for Herceptin. After the trials were over, she was found to be in complete remission and has taken no chemo in 9 1/2 years.

I met with some Genentech representatives last week at the San Antonio Breast Cancer Symposium and they are planning to do a survey on just about everyone who has taken Herceptin. They hope to get some long term survival figures. I will have more details when they are available from Genentech. I hope that you will participate.

I am a 4 1/2 year stage IV survivor, still NED and we have several others who frequent this board.

Hugs and congratulations
Christine

Phylicia
12-15-2003, 07:55 AM
I have been on Herceptin and NED for over five years, since October 1998.

Lolly
12-15-2003, 12:03 PM
Hi,
I've been NED while on Herceptin since August 2001, and hope to remain that way for a long time. The survey will be interesting!
Lolly

Marily
03-25-2006, 11:26 AM
Hi I am 6 year survivor, stage IV I am also Ned and on Herceptin just about 5 years. My Oncologist said I am her only one that has done this. It is really great to hear we are a growing group! Are you all continuing the Herceptin? I am very interested on this long term follow up. I talked to Dr Jim Lasker at Miraval and He encouraged me to see if any of the research Hospitals were doing any long term follow up, and if not to get someone interested. I called many places and Genenteck but no one was looking at long term effects .. I am very excited and will follow this thread with great interest. Hugs Marily

Joe
03-25-2006, 12:19 PM
I have discussed long term survival with several leading researchers while in San Antonio. They are willing to do a study if we could come up with a lsit of about 10 survivors 5+ years who have access to their original tumor samples.

Regards
Joe

Chelee
03-25-2006, 03:01 PM
Like another person said here...I don't know the answer to your question...but I must say it is a wonderful post to read. Very encouraging since I am so new to all this. I am a stage III A with a highly aggressive cancer doing the herceptin...so when I read posts like yours...it gives me real hope. Thanks for posting. :)

God Bless you...

Chelee

StephN
03-25-2006, 04:15 PM
... so that it will not get lost on the general board, please.
I recall that conversation and a couple of "heavy hitter" researchers were the ones asking for such a list.
Those women five or more years out ARE still few and far between, but I am confident can be gathered for such an important survey.

Unfortunately, I am not quite 4 years off chemo at this point, so I guess depending on how the list forms, there may be another break point the researchers might be interested in. I do have access to my original tumor blocks.

Let's not lose this topic! The information gleaned from long term survival on Herceptin could save lives in the future.

jeff
03-25-2006, 04:33 PM
http://www.jco.org/cgi/content/full/20/3/620

Check this out--this guy writes interesting stuff about the possibility that some women with metastatic bc are getting cured...

Best to all,
Jeff

Marily
03-25-2006, 09:11 PM
Joe, I leave tomorrow very early for California but when I arrive I will call my Oncologist and see if I can get those slides.. or whatever I need. I am very eager to find out more about this.. Thank you so much for your interest Marily

jhandley
03-25-2006, 10:24 PM
It seems to me there is an even more important place for the her 2 serum testing in the long term survivor scenario.

jackie

Lani
03-26-2006, 11:58 AM
Great article
I would like to start another thread inquiring of those Long-Lived Stage IVs what their hormone receptor status is and, if ER positive, how long they have been/were on antihormonal therapy, and what kind

I have heard bantered around that the ER receptor pathway may be the origin of the resistance that develops to Herceptin treatment.

If this is so, would the cancer be expected to return when antihormonals are stopped--which, I suppose, they never do...

Unregistered
03-26-2006, 01:09 PM
So much to learn.

So much to know.

So little certainty - I wonder what they will make of todays treatments in 100 years.

A cure? Isn't life an ongoing remission from a greater bodily failure - no cure there I have heard of.

Ongoing remission and good health to all.

RB

Lolly
03-27-2006, 11:28 AM
This really is an interesting thread; I'm updating my earlier (2003!) post to bring this back to the top, and to say that I've recurred 2 more times since this thread was started, but only to the same lymph nodes as the ones I recurred to in 2001, so I'm very intrigued by Jeff's link as I now believe some of us are going to be living a very long time with manageable disease, even though we can't consider ourselves "cured" of metastatic disease. Another study possibility?!

<3 Lolly

P.S. to Anne;
I'm ER/PR-, from first diagnosis in '99, and had biopsy re-tested both for HER2 and hormone with this recurrence, still HER2+, ER/PR-...

anne
03-27-2006, 03:37 PM
Ladies,

Of your long time survival: BRAVO! I was curious to see how many of you were ER+. Does it increase your chance of being "cured" if you can have antihormanal tx along w. Herceptin? Curious what the experience on the board is?

DeeM
03-27-2006, 05:09 PM
hi all,

Well for once, I do not qualified for the long term study! But I have been on herception for over 4 years 2 months and have had no progression on my bone mets. So if you do need another body and let us "younger" ones participate, let me know.

Dee

Marily
03-30-2006, 01:19 AM
Lani, Just found your questions. I am very Er +++Pr +++ and Her2+++DX r breast,had 13 lymph removed, metz to liver, lung,bone. Did rounds of A/C taxol/Herceptin. On tamox for 3 years had to fight to get off it, since it is felt that Herceptin people should not be on tamox for more than 2-3 years. But you have also to be post menapausal which I was not, and had to fight to prove first I was not post menapausal, did the lupron, etc. ovaries came back to work after the big chemo? than to fight to have my ovaries out to go on to Aromasin.. I was 55 and they were perfectly functioning, so now plan to stay on Aromasin until ? what ever new comes up I guess. Really was interested to hear that Er+ with Her 2pos was an unusual thing? I am looking for more information on that... anyone else hear this?
Marily

Johanna Johannsdottir
03-30-2006, 05:29 AM
Hello again,

I have nothing to contribute on the subject because I started this stage IV only 9 months ago. Was first dx. Ã* januar 2002. Before I found this website I searched for infos and found this sentence but have forgotten where. I keep in my computer and read it now and then. Thinking about to enlarge it and print it.

,,The goal of treatment for stage IV cancer is to prolong survival and maintain the quality of life. Women with stage IV disease are often told that, although long-term management of their cancer is possible, there is no cure. Yet more and more people with stage IV cancer are defying the odds of cancer survival.“
best to all


Jóhanna

callen03
04-27-2006, 12:46 PM
I was diagnosed this year. I didn't realize how lucky I was to be getting Herceptin until I found this website.

Like the above post, my oncologist told me that the "average" person with Stage IV can look forward to two years of remission. I am optimistic that I will not be "average" and will benefit from newer and better medicines. I am taking part in a clinical trial (doxil, carbo, & herceptin) for Stage IV BC.

I hope to increase the stats, along with those of you who also receive Herceptin.

Wish me luck!!!!

sally
04-27-2006, 02:34 PM
I was dx stage IV HER2+++ er+/pr+ 8/16 pos lymph nodes and liver mets in May 2004. I have been NED since Oct 2004. I am still getting Herceptin every 3 weeks. I'm 38 years old and postmeno. Had ooph at age 37 instead of those dreadful Lupron shots I had prior. I just had a PET this week and was told it came out perfect. Stage IV survivors are a new breed. Sally

Joe
04-27-2006, 03:04 PM
Christine:


dx'ed June 1990 lumpectomy, chemo, radiation
Recurrence June 1999, AC, Taxol, Herceptin, Gamma Knife, WBR, Herceptin
July 2001 Declared NED


Regards
Joe

CLTann
04-27-2006, 04:44 PM
To get a complete picture, would you lucky survivors share with rest of us what chemo regimen you used with Herceptin and how long? I am a stage 1 person but am curious to see whether other medications could have affected the outcome.

Ann

Lyn
04-27-2006, 06:40 PM
Well, I started this nightmare journey in July 1998 when I had my very very radical mastectomy, and I always remember the words of my friend when she went to have a breast examination, she said to the doc, I had Cerival Cancer when I had my last child, he said no you have Cervical Cancer, stunned like being hit in the face with a frozen fish, he said as long as you have a Cervex you have Cervical Cancer, so now she has to be extra careful with her PAP smear tests. Anyway, I was given 2-3 years at best, you are not kidding that was the best news I had, I was expecting to go home sort out my clothes, canclel the new glasses I had ordered and go and plan a funeral, but as soon as I new I had at least that amount of time, it was eyes wide open you have 2 whole years to get rid of it, so there my journey began, and it has been one hell of a ride since then, tears, joys, histeria, hours and hours of down loads, arguing with Oncologists, I was soooooo, lucky the one I got at the time I have only just worked out, was 33, he was younger than my oldest son, and I have had to train him the Herceptin Way, he is amazed how come I am still alive, he said according to my Histololy Report I should have been dead years ago, and that his how we converse, he his head of Oncology of my, yes my Hospital as well as 2 others and he tells his staff to give me what I want when I want, and his other comment is, she knows everything and everyone, and believe it or not they jump when he tells thems, do you all remember the SAGA, I had with the nurses in the Oncology Day Unit, Well, the do everything now except throw rose petals when they se me coming, and you all know I am not a bully, and it had to be bad for me to complain, but I see in their faces, Yeah, she is in denial, she is on the way out, so I beat them to it, I say no, I am not in denial, they just moved the Goal Post and Raised the Bar, and I am "Still Standing" well with a walking stick, but aren't we all?l As to Herceptin, I have been on that as long as my Onc and I managed to get it off the drug company and we started our own trial you might say, so for as long as this site has been going I have had membeship to our HER2 Forum. As to does it help, like Lolly, I have had lymph Gland and skin mets the whole time, and then it went into the tissue of my other breast, which is a separate primary, so as far as the left side goes, there is NED, and now I have to start again, and hopefully this latest stint, going from the breast to leaning up against the spinal column to actually diveing into my chord and think it is going to take over, and of course it had to do that and it had to be rare. I asked my Onc could it be a mutated form of Inflammatory Breast Cancer, he didn't rule it out, so along the way, I developed a Connective Tissue Disorder, not your everyday one, I had to have the worst, attacking my immune system, this is where your body wants to kill itself as well, sound familiar, so with that I got a bit of Lupus, skin and gland involvement, Sjrogens Saliva Glands dry up, a knightmare trying to eat anythin dry or large pills, Sclerderma, facial atrophy which they keep trying to blame on radiation when in actual fact this along with Trigeminal Neuraligia, which gives you Horner's Syndrom, droppy eye and numb face and neck, so lets try Navelbine, yes the lumps were disappearing over night, I am also taking Aromasin, and what what more lumps and skin, but I was NED, eostrogen blocker stopped need for further radiation, well Xeloda for mets to chest wound area, and it worked, but no, more skin, I give up, Xeloda, letting me down on the skin, but Navelbine working, go straight to the enlarged lymph site, lets add carboplatin, nurse horrified, and onc kinda agreed with her, so I said OK, back to our site, and here is the dosage for Navelbine/Carboplatin/Herceptin, guess who won here, so requested biopsy be HER2 tested. which happend to be the right side, where I had been tellling them since 2003 there was a problem, instead they found another problem, my thyroid was enlarged, and YES, they told themselves thay found the problem, no they gave me anoter one, and enlarged thyroid which they treated in hospital, and gave me heart failure in 3 valves and now a heart problem it was wonderful to find out later that they had told everyone expect my hubby and me I would not be leaving there, I had mets to the lung, Wrong, fluid, they dumped 5kilo yes 5kilo of fluid using a direcic over night, wonder why I was having trouble breathing, I never know what is life threatening, so how was I suppposed to know was critical, and not expected to live, showed them, not to mention I had Pericarditus after my first NED on AC, , not even a week, that weekend, he said go home and enjoy live my bloods and scans were clear, I swear all I had was one glass of wine and one row of chocolate, but on the Sunday, my hubby was tring to stall my mother off and tell her I had gone out, well gone out with a bang actually, anyway I survived that with antibiotics, are where was I, yes Fibromyalgia, aches pains stabbing pains, and even halucinations, I had to convince the Nerve Specialist I was seeing in the now, that I had Trigiminal Neuralgia, all of these conditions I have had to diagnose myself, because your doc is only as good as your own information, so I said "Yes I have" she says "no you dont', there is no pain, well what do you think I take the Neurontin for, then she looked into my eyes, tells me my bung eye is the good I and I have, all together now, HORNER'S SYNDROME" and I explained this was all before the thyroid, and they still couldn't find the cause until now, 3 listened and decided he had just turned 40 he must know something, so I let my Onc choose for a change, and he said to stop the eostrogen blocker to let the cancer cells grow so the chemo has a chance to kill, it, problem was it was supposed to be the breast, not this other lurker, and from the day I stopped the blocker, Aromasin I started to loose the lift in my right arm, and that was because the tumour was on the march, a bit like Darth Veyder, and of all things, that is what my computer tower looks like. off the track again,a bit like 4W4 adventure, or a computer game. Then I went to the shops on 2/02/2003 after chemo, some little darling decided the soft drink was better all over the floor and chocolate isle than in a bottle he/she didn't even pay for, well for 3 months I suffered, and was virtually treated like a hypochondriac, until a MRI was done, and in fact I had fractured my left shoulder humeral head, and no blood supply got to my arm, so I got avascula necrosis, and I need a shoulder replacement, not even a repair, so I have been having Hydrocortisone Needles to pump up my shoulder so I can get pain relief and a little extra use there, so whenever I had a bone scan, wow look at than Bone Mets, Noooooooo, fracture, but they act like I am not even in the room when I say it, so next step, my dear old dad, had been making Essiac Tea religiously since 1998 and convinced he had cured me, well, I had to agree with him, I just use to go for chemo for the social outing, anyways he was a darling for doing it, but he had a massive heart attack waiting for surgery, well you get that when you go to the Mall, you call it, and have a capacciona and a Heart Foundation Muffin, every day, yes, then he would go home and have afternoon tea, a nice fresh Chocolate Eclair, followed with his chocolates, he bought a large Variety Box for the week, and then over the years he was developing dementia so he probably forgot what he had had and probably repeat it, so the heart attack may have been for the best, he may have ended up hooked to machines, he also had an enlarged thyroid and they didn't bother treating it, something to do with my EX brother, changing his Will the week before he died, but he was in the ANZAC parade a mission he was determined to be in for the last year, with all the appropriate medals and blazer, and Beret, so my dad passed, and my mother, a whole defferent chapter, and I won't even go there, but the Stress it caused!!! So my dad's , brother, 10 years younger, came down for the funeral, and I happened to mention that Boris, my onc said you missed the appointment, he was stunned for a moment because he had asked me for a onc for his friend, and he asked me if he had told me and he said no, so I said well you are now, he had a RARE, of course White Melenoma, and Boris was the only one who found it, very deadly but he went through the paces, had a vaccine made and it got rid of it, problem it was just about the size of his whole back when they removed it, I should have known better and told him what he actally had to do, but during the surgery there was what I call a Spill, when miniscual cells attach themselves to the nearest blood vessel, so he developed lung cancer and he was in so much pain, Boris was able to get him in for immediate radiation at a hospital 100ks away, this relieved the pain, but he hadn't worked out any chemo, we know better, we are forarmed with what we want, any ways they didn't tell me and he went home and died in a coma 1 week later, so there are things worse than Breast Cancer. Not finished yet, apart from the fact we all have to have our LV monitered, I have to have the echos for my heart as well, so every 3 months, so heart under control so we think, skip a couple of years here, I get up to got to the bathroom in the middle of the night, apparently low blood pressure, so I bounce off the wall and fracture my collar bone, same side as bung shoulder, so anti-inflammatories , orphin, what spine pain, Idon't have any, wonder why, this thing decides to wrap itself around my spinal chord and take a swim in my cervical fluid, all the why I am licking wonds for where I have been dropping all over the place. Well back again, so I have already had AC rads CMF, and I wasn't eostrogen responsive, and up comes a lump, I was going on Holidays for 2/3 weeks, So by now I have had, AC rads CMF, Femara, Taxotere, Rads, Navelbine, Carboplatin, Herceptin, and working on cleaning up the right side, because touch wood, I am superstitious, it is clean. More rads, along the way it is my birthday, I was 44 when I started, lets have the tubes fixed, no more eostrogen there either, my first son was born on New Years Eve, my second on my birthday, and my daughter came early and I got this extra bundle along the way, but she has grown up with it, so this is her life, and she is at the right age to understand what is going on now. So now I am over the celebration days. So in all after we tried Radiaiton with Xeloda for what I call the mutated inflammatory breast cancer, for which I was hospitalised, I thought more was better so I upped the Xeloda, and just aboout short I cremated my breast we try the oral cyclosphomide/Xeloda/Herceptin, but I just found out that the nerve blocker I have been taking since 1998 to stop the horrible pinching of staples in my chest actually impaires Taxanes and Cyclosphosomies, not only have I been having Epelim a convulsant while on these regimes but I am also on Nerurontin nerve blocker and thankfully it seems acceptable, so since for forever, 1998 it looks like I have had this other drug attack my treatments along the way, so I started Herceptin/Gemzar/Txl/Zometa and I don't think I have completed a round yet, but the two lumps under my arm have gone, and I didn't get them biopsied, I didn't end up getting the biopsy on the fluid my heart is swimming in that brought my LV down do abour 47, and twice now, my 20mins in the MRI have been 20 hours on my back with no breathing problems, So, OK did I forget anything with my chemo/HErceptin brain, this is all from memory, and there is a lot more there as well.

callen03
04-28-2006, 06:18 AM
Lyn, your determination and courage are very inspiring to me. Hang in there and continue to show those doctors that Stage IV survivors can beat those awful stats.

How many years have you been taking the Herceptin?

Brian
04-28-2006, 09:20 AM
My wife Lisa had a complete response to the Herceptin and was NED for 2.5 years. She suffered recurrances to her lung and liver last year which were surgically addressed. At this point she has been NED for 7 months since her last surgery and is taking only weekly Herceptin.

She is a 14 year survivor at this point and is 4 years from the first recurrance. We do have access to our original tissue samples. Hopefully, like some of you women we can stay NED and eventually get off the Herceptin.

Good Luck and God Bless!
Brian and Lisa

mamacze
04-28-2006, 09:54 PM
This is an interesting and helpful thread to those of us who are stage IV. Our oncologists have never had us in long term remission and I think they too would like to hear the experience of others...

Stage 0 2001 lumpectomy and radation

Stage IV 2004 with mets to all four lobes of lungs, herceptin and navelbine, now just herceptin and I have been NED since Jan of 2005.

I have access to my tissue samples.

Kim from CT

cosmicdust
04-29-2006, 04:43 AM
I will be new to herceptin - stge 4 w/mets to liver and spine. You have given me courage to continue the battle!I only hope herceptin works as well for me as it has for you... blessings from northern Minnesota! 10Q! (thank you! :-})

DeeM
04-29-2006, 09:03 AM
hi,

I was dx with bc mets to the bone in Jan 2002. I then started a year of chemo of taxotere, zometa and herception. I also had rads to sternum and mid thoracic spine. I still take herception every two weeks and zometa every other month. When I went to get my ob appt and had a new doc, she came into the room, looked at my chart and said, excuse me, I will be right back. When she came into the room , she asked my name again and stated, I thought I had the wrong patient! So you could say, I look rather healthy. I am 49 now and had my first occurance at 34 with DCIS. I had a left masectomy and thought I was done until I had this dx.

Right now, I am feeling great. I try to bike or walk daily for 45-60 minutes. I take lasix but no other mediations except as above. I would love to get a study going. I think we are a new breed and I would love to be one of the first leaders!

Dee

Lyn
04-30-2006, 06:53 AM
Hi Callen, couldn't find you name, I have been on Herceptin for 4-5 years no, and not had to stop it before so hopefully I will get plugged in again soon for a top up.

Love & Hugs Lyn

maryb
05-04-2006, 06:57 PM
Hi...I stumbled on your bullet and was wondering why only 2-3 on tamox? I was diag in '99, very ER+ and PR+ and her2/neu positive(value never reported...); I have done the five years of tamoxifen, am currently on Femara and just started on Herceptin.....no distant metastic disease ever diagnosed, but have 15 of 36 nodes test positive....(still here and fighting!!)

Lyn
05-04-2006, 08:15 PM
Hi, I was never on Tamoxefin, at the time I was premenapausal and not hormone responsive, apparently your status can change but Femara didn't work for me but later Aromasin did, similar but better than Tamoxefin, and used when Tamoxefin failed, I have been treating nodes around neck and skin mets non stop since 1998 and hardly ever stayed NED long enough to stay on these drugs but as the Aromasin shrunk some nodes while waiting for radiation I stayed on it until my onc came up with the brilliant stupid idea to stop it, I have a friend who was on Tamoxefin for 12 months and kept complaining of being short of breath, it wasn't until they did a CT with her laying on her stomach that they found she had clots on the lung from the Tamoxefen then decided to treat her seriously but last I heard they weren't budging. So I am back on the Aromasin but not doing much for spinal chord involvement.

Love & Hugs Lyn

Marily
05-05-2006, 01:41 PM
Hi this is where I started my investigation on why I needed to switch. I also spoke to a Dr at "Cancer Servivors Cure meeting" in Dallas and he told me if he were my Doctor, he would have had me off Tamoxifen at least two years ago? Hope this helps you.. Hugs Marily



this is quoted from Breast Cancer .org
Two recent studies have looked at switching from tamoxifen to Arimidex (http://www.breastcancer.org/research_hormonal_abst3.html) and from tamoxifen to Aromasin (http://www.breastcancer.org/aromasin_research.html). And two small studies have showed a benefit of switching from tamoxifen to Arimidex (http://www.breastcancer.org/research_hormonal_012004.html). In June 2004, a large study showed that women who switched to Aromasin after two to three years of taking tamoxifen were significantly more likely to live disease-free than women who took the standard five years of tamoxifen. In the study reviewed here, the same researchers looked at the results after an additional year of follow-up (for a total of 30 months) for the women in the original study.

Study design: The participants were 4,742 post-menopausal women with hormone-receptor-positive, early-stage breast cancer. All of the women had taken tamoxifen for two to three years.

The researchers randomly assigned the women to two groups:






Half switched from tamoxifen to Aromasin, which they took for about two and a half more years.
Half continued to take tamoxifen for about another two and a half years.
After more than 90% of the women had finished taking either treatment to complete a total of five years of hormonal therapy, the researchers looked at disease-free survival (how many women were alive without the cancer at that time) and overall survival (how many women were alive, with or without a recurrence) in the two groups.

Results: The researchers found a significant difference between the two groups in the number of women who had a recurrence in the same breast, or developed a new cancer in the other breast:



Of the women who switched to Aromasin, 6% had a recurrence or a new cancer.
Of the women who stayed on tamoxifen, 9.5% had a recurrence or a new cancer.
This means that after completing five years of hormonal therapy, the women in the group that switched from tamoxifen to Aromasin were about a third less likely than the women who stayed on tamoxifen to have recurrent disease or a new cancer in the other breast.

Both groups of women did well and were living a long time. Overall survival was similar in both groups.

Conclusion: The researchers concluded that switching to Aromasin after two to three years of tamoxifen significantly improved disease-free survival compared to the standard five years of tamoxifen for post-menopausal women with early-stage, hormone-receptor-positive breast cancer.

Take-home message: This study adds to the growing body of evidence suggesting that aromatase inhibitors are better than tamoxifen for reducing the risk of the cancer coming back in post-menopausal women with hormone-receptor-positive, early-stage disease.

Based on this and other recent studies (http://www.breastcancer.org/research_2004_12.html), researchers are recommending changes in guidelines for hormonal treatment in post-menopausal women (http://www.breastcancer.org/research_hormonal_012002.html).

Here are some key points to consider with your doctor in making treatment decisions about hormonal therapy:



If you're a post-menopausal woman taking tamoxifen, you might want to discuss the possibility of switching to Arimidex or Aromasin, which may have fewer side effects than tamoxifen.
If you're choosing your first hormonal therapy, Arimidex has advantages (http://www.breastcancer.org/research_hormonal_abst3.html) over tamoxifen, in terms of greater benefit and fewer side effects .
If you've completed five years of tamoxifen, consider Femara for extended protection against recurrence.
Be aware of side effects of each medication. A low risk of blood clots and endometrial cancer is associated with tamoxifen. Aromatase inhibitors can cause bone loss, aches, and pains.
Together, you and your doctor can decide which treatment is best for you at this time. You'll see your doctor regularly as you go through treatment and will be able to talk about your treatment plan and how you feel about it. You can adjust your treatment over time as appropriate and necessary.

Keep visiting breastcancer.org for research updates on hormonal therapies.

Phylicia
05-05-2006, 03:56 PM
I would be willing to participate in a survey of long-term survivors. I can ask my oncologist and surgeon whether tissue is still available from the original diagnoses. I have been on Herceptin since October 1998 and I remain NED to date. As I get closer to retirement, I am interested in FDA approval of the vaccine (for which I think I am a candidate), and the oral pill since they are likely to be far less costly than the Herceptin infusion every three weeks.

Phylicia
05-05-2006, 03:57 PM
I forgot to mention that I am ER negative.

alw
05-05-2006, 04:55 PM
Phylicia,

Would you mind posting the basics of your original diagnosis (ie which stage, lymph node involvement, etc.)?

Thanks!