TRIPLE POSITIVE GROUP
Comments
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Or a padded room with no dust!
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Hey have a question for any of you out there. Can you get a recurrence while taking tamox? or a new dx while taking it?
Just been feeling so down like no one in my family cares. Been thinking on quiting tamox and not doing the fight if ever get cancer back. Some times I cry and think why am I still here.
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Congrats Special K and great picture
I love all of the funny stories I just caught up reading. My boys are only 2 and 3 so I've only had a few "incidents" so far, like the oldest just getting out of a full-leg cast after falling and fracturing his tibia. The doctor actually said it was called a "toddler fracture" haha.
So I had my 6th and final chemo on Thursday. I am thrilled knowing that this time, once I feel better, I won't be going back and feeling sick again.
Although I was told that I wouldn't need radiation it seems there's been a change of plans. My radiation oncologist reexamined my slides at a tumor board meeting and said that the cancer was seen in two slides close to my skin. Not sure why they didn't know this before. My question is how bad is radiation? It makes me very nervous since I'm claustrophobic and I know you can't move during treatment. Thanks in advance ladies!0 -
Ang, don't underestimate the fact that it might be the Tamoxifen that is contributing to your depressive feelings. All these drugs that mess with our hormones can also mess with out emotions and moods.
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I'm a lurker since I'm not triple positive. I am ER-/PR-/Her2+ (not an active board I can find for us folks that I can find). But, I do question whether my treatment is correct, whether I should have had a mastectomy rather than a lumpectomy, whether I should go against docs orders and take supplements, whether I should have just done herceptin only, etc.
Please, please... cite the studies you folks talk about... I can read; I know how to read research studies; I know how to look for what is not said in a research study; I will make my own decisions; but please save me the hours of trying to find what study you are referring to! Because, if I can't read them myself, my fears start getting in the way, I start doubting my treatment. You folks are the key knowledge base that I use... but half-knowledge is frightening.
Emotionally, the lack of full information can be devastating for some people... I've been a wreck, a mess, doubting a lot of things about my treatment this week. I have heart damage due to my chemotherapy... to hear that for some people chemo is unnecessary messes with my head, even though I know that the statement was about ER+/HER2+.
Enough of my rant, thanks for listening...
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Marissa u won't be enclosed--it's all open u just can't move and it's done in no time maybe 7 minutes and the machine moves well over u, not close--unless there is a whole new way of doin tit and I wiuld imagin if u'r doing it a newer way it woud be better.
6cats if u talked to u'r Drs, at the beginning are u second guessing them now? I'm sorry I don't knw anything about this but I can't imagine that they do not know the protocol for wht u needs. But again I don.t know. I;m sure someone will come on to help you.What makes u feel so uncomfortable with what's going on.
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Ang7894,
Yes, ang, anyone can recur. But in looking at your cancer characteristics and treatment, they are the closest to mine that I've seen on the boards, and I'm here with no recurrence at 11 years out from completion of treatment. And in so many ways, your glass is not half empty, it is more than half full. Sometimes when it gets depressing, it is what you do to keep yourself going that counts. When no one else seems to care, coming here is one of those things. These people have been there and done that.
AlaskaAngel
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Marisa, this site's rads info includes this, which has a picture so you can see the machine:
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ang - yes, you can have a recurrence on Tamoxifen, we can all have a recurrence on whateverdrug we are on. I agree with Bren, it may be the Tamoxifen that is making you feel low though - maybe talk to your doc about adding an anti-depressant that does not interact with Tamoxifen. I know some take Effexor.
marisa - thanks! And yay for being done! I can't address your rads question but I know that once your planning is done the time spent actually receiving the rads is pretty brief. I have an old friend whose toddler fell off the piano bench - broke his arm - a toddler fracture!
6cats - I believe the studies mentioned are regarding ER+ BC and chemo. It is thought that many of us get more benefit from anti-hormonals than from chemo, but for triple positives the trials with Herceptin have been done with chemo, and there is some thought that synergistically it works better with chemo, so that is how we get it. Because you don't have anti-hormonal drugs available to benefit you yet being ER-, chemo is a much more important part of your treatment. Some of the thinking with chemo is due to the fact that ER+ BC sometimes does recur years after chemo, while ER- recurrence is far more rare after 5 years. I am sure you have read that lumpectomy and rads is equal to mastectomy and actually there was a study recently that indicated lumpectomy patients lived longer than mastectomy patients. Here is a thread for ER-/PR-/Her2+ peeps:
http://community.breastcancer.org/forum/80/topic/767013?page=27#idx_791
Here are a few references for you, you may have already seen some of this info:
http://www.sciencedaily.com/releases/2010/02/100223132017.htm
http://www.stopcancerfund.org/t-breast-cancer/mastectomy-v-lumpectomy-who-decides/
http://www.nccn.org/patients/guidelines/breast/index.html#/74/
http://www.mayoclinic.com/health/breast-cancer/HQ00348/NSECTIONGROUP=2
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Lynn,
I am sorry that the idea that some patients don't have to do chemotherapy is upsetting. I don't know anyone who is knowledgeable enough to interpret studies that doesn't question their treatment. I haven't done the research for your uncommon diagnosis so I can't quote studies that would apply to you. And part of the problem is that studies that ARE being done for the ER+ patients are not allowing participation by the ER+ HER2 positive patients to prove whether early stage ER+ HER2 positive patients get any benefit beyond ovarian ablation by chemotherapy; in addition, the only study being done to prove whether those patients could use trastuzumab without chemo is being done on elderly patients only, so once again the majority of those patients are being prevented from acquiring the evidence one way or the other.
All I can say is that in your case, since you don't have the advantage of hormonal treatments as therapies, I do believe chemotherapy is important for you.
Hope that helps.
A.A.
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i meant to wish you happy anniversary,pbrain, & didnt even go to bco once. out of town friend was here. so good job! hope you danced yer a$$ off! or @ least celebrated in some small way. i will supposedly be done with herceptin in december,too. Just done, with going there. it was interesting and all that, know it saved my life, but just looking forward to being done with active treatment. WANT PORT OUT!!! i keep meaning to ask, does anybody else end up with a huge bruise where there port is after infusion? it has happened to me each time, and then always clears up before next one, and i forget to ask if that is normal. Port hasjust become uncomfortable. i have no meat on myself there, and it really pokes out, and i can so feel the place where part of it goes up and then back down. creeepy. had a partially collapsed lung, on insertion, and am afraid of THAT happening upon removal of it too
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SpecialK,
One comment I have about the reasons for the original trastuzumab studies.... While it is only a suspicion on my part, I have wondered about the reasons for leaving most patients who were either node-negative or with tumors under 2 cm out of those studies. The reasons may have been not only to protect those least at risk from being tested by a new drug with unknown ramifications, but also because someone may have realized that the results would be far more dramatic and clear when applied to the patients most likely to benefit. And at the time, it was a battle just to get any trial like that one going.
If that was the case, I do have to agree with that philosophy. Clearly those trials have benefitted so many.
A.A.
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happy 3 year specialk!!! YAY!!! and ang7894, i see you are coming up on one year of tamoxifen. That is the thing i struggle with most. that daily pill. i took arimidex for nearly 6 mos, and was experiencing excruciating pain on them, onc had me stop, finally, then tamox. its been a month n a half, and now i am finding trigger thumb coming back. not in dominant hand, but BC side, where i do have lymphedema. I have formulated a theory, that since the lymph fluid gets to that arm n hand but has a harder time coming out, that any medicine i am taking also might "sit" in that arm too long. I asked, the last time i had radioctive dye injected into my other arm, the guy who did it, and he said he would massage the crap out of that lymphedema arm, and drink tons of water!!!! he thought that was a pretty good theory. i try to get moving and drink plenty of water just on general principle, esp. after bc. This stuff IS depressing!! i have been more morose myself the last week or so too, nothing going on so i will blame it on the tamox. About herceptin, i had also read it was more effective during chemo too.
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Ang I can't imagine that no one cares. But I do think when people are over the surgery, chemo etc. zMost people seem to think it's ALL over and that's it. Un;ess someone has dealt with cancer personally u really don;t have a clue what's going on.n And it;s not easy on one of the meds for a lot of women--it's like it churns u;r body and emotions all over the place. But like wht was mentioned call u'r Dr. for an antidepressant it might make a big difference in how u feel. Good Luck
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Hopeful and wishful myths are often very pervasive.
I do want to clarify something, since I have seen a comparatively longer period of information about breast cancer at the time that treatment changed for HER2 patients to start including trastuzumab. Due to the way in which the trials were conducted, we do not have adequate evidence to know yet whether chemotherapy in addition to trastuzumab works better. I know, I know, it is often said. But because the trials for trastuzumab for general adjuvant use have never been done on trastuzumab used alone, it is more accurate to say that adding trastuzumab to chemotherapy "works better". We still don't know how necessary or useful the chemotherapy actually is when combined with trastuzumab.
What also is not accurate is to use the terminology "using trastuzumab alone" when comparing it to using trastuzumab with chemotherapy. That is because there is such a large group that potentially could not only benefit from trastuzumab without chemo but with either tamoxifen or an AI or ovarian ablation by other means than chemotherapy.
What is possibly likely is that since hormone receptor negative HER2 positive patients don't generally benefit from tamoxifen or the AI's, they can't take those in addition to trastuzmab as an alternative to trastuzumab alone. Those patients still probably benefit from having whatever amount of ovarian ablation they get from doing chemotherapy in addition to trastuzumab.
It isn't obvious information, and the distinctions get lost in the the panic and rush to move forward with some kind of treatment, so the confusion is understandable. Nevertheless, I do think it is important to try to explain it.
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As mentioned, it is equally possible that there maybe some synergism when combining trastuzumab with chemotherapy, although there is no clear evidence one way or the other because trials to find the truth about that have not been conducted. A trial is in progress for elderly women. There also are trials using neoadjuvant trastuzumab alone, followed by chemotherapy, that are showing trastuzumab used without chemotherapy can be beneficial even prior to the following chemotherapy treatment. Some patients no doubt will benefit from the additional chemotherapy, particularly if they have not gone through ovarian ablation through any other method prior to treatment.
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Oh thank you ladies I think I am going to talk to my doctor. All of you are so Awesome I am so blessed to have you guys and this site.
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OK my friends..... I'll be gone for the next week sailing on Norwegian Breakaway out of NY.... I will try and post pics if I get decent internet connection!
Talk to you when I get home xoxoxoxo
EVERYONE please stay well!
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Thank you, thank you, thank you...
For all for the explanations, links, etc. I realize that my diagnosis is different than most here... but like all you ladies, I want to live!! and that means that I look at what I have done, and what is next for me with a critical eye. I so appreciate the time you all have taken to clarify things!!!
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AA - it is interesting, LeeA started on Herceptin only prior to chemo because there were some delays (don't remember now why) and her doc wanted to at least start her on Herceptin while they sorted it out. I wonder if we will see more of this in the future. If they are imaging along with this, and see effect on tumors, it will provide some evidence that Herceptin without chemo may be beneficial.
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kathec, the lack of tissue is probably part of why you get the bruising, unfortunately. (Most of us have too much tissue, including me....) But removal of the port generally is very quick and much simpler for the surgeon and is not as invasive, so it is very unlikely you would have problems again with the lung.
6cats, I appreciate all the links that Special K posted to help (including the part I repeated that she originally posted). It gets SO complicated. When some of the trials were done, they didn't collect hormone receptor information yet, so for those trials that isn't factored in. It is really great to have you here now too, to help others with getting through it.
SpecialK, thanks for your patience and posts. Even though HER2 positive patients were denied participation in SOFT, TEXT, and TAILOR-X and the results can't be completely applied to us... I am hoping that in some way the information might help anyway to at least distinguish better whether or not the main benefit of chemotherapy is chemo-ablation. I know my posts must get aggravating and tiresome. But when it comes to all the women in the world who are in economic circumstances or personal circumstancese who will not get chemotherapy, I would like them and their caretakers to know if there is a difference in outcomes or not between chemotherapy and the use of OA.
It isn't always third world people that "miss out". Sometimes it is the woman down the street who is literally only getting by day to day by keeping two jobs, and can't do all the stuff that goes with chemotherapy -- the endless labs and imaging and doctor visits and not feeling well.
Up here in Alaska, where people live half a day's travel or more by boat or air just from a hospital that isn't even close to any cancer center or oncologist or rads center, some of it is just overwhelmingly impossible. There are sources for help, but pile that bleak picture onto things like 3 kids and an abusive spouse....
It just would be so helpful not to continue to promote the belief that chemo is helpful instead of a one-time procedure like OA, if in fact it really isn't any more effective. That is a big IF. With Europe now offering trastuzumab by subcutaneous injection, if chemotherapy isn't superior to OA for HR positive people then there is hope that more people could be treated.
So I'm really picky about trying to nail down what is real and what is just rumor. Maybe someone here can find some studies that show promise for proving that chemo and trastuzumab have synergy.
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SpecialK, I just saw your post. They are imaging those who are getting neoadjuvant trastuzumab prior to doing chemotherapy. The problem there still is that if those patients have not had some form of OA previously and they then get that protective effect from the chemotherapy-induced ablation that follows their trastuzumab-alone treatment, then it can still appear that chemo is essential.
If anyone knows of other studies that differ it would be helpful to know about them.
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AA - my reference to LeeA had to do with a delay to chemo, if I remember correctly, because of healing issues and the need for more surgery related to her recon. It was keeping her from starting chemo, so her MO started her on Herceptin only. I don't know if they imaged her during that period to see if there was any benefit and of course, this was an isolated case. I believe that she was post-meno not related to BC.
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Oh, okay, thanks, SpecialK.
There are articles about trials discussing synergy between trastuzumab and chemotherapy. What is missing is any confirmation that chemo in combination with trastuzumab is better than OA + trastuzumab +/- tamoxifen or an AI.
Example:
http://www.ncbi.nlm.nih.gov/pubmed/11301370
Or maybe I'm missing something that is out there? I just keep thinking that there must be a reason why oncs favor chemotherapy with trastuzumab over OA with trastuzumab.
I do know it happened because the only trastuzumab trials that were done included chemotherapy, and the belief was that it would be unethical to offer trastuzumab without chemotherapy because it might put some patients at higher risk.
A.A.
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SpecialK , I talked to one of our pastor's wives today and her DIL also works at the Clearwater aquarium. She works with the dolphins as her degree was some sort of Marine Biology. Small world
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Alaska, I work for Roche/Genentech and my job is to submit products (blood tests--I'm in the diagnostics division) to FDA for market clearance. FDA is extremely specific about the population intended for the use of drug or device. You can't include everyone with breast cancer. That is instant failure. So instead you start out with later stages or larger tumors, then you do what we call claims expansions, by further testing in other populations like stage 1 and node negative. I have one product going into FDA this year that is being tested in a very limited population (people over 50) but we are already starting the clinical trial for people greater than age 30. (Thank you for your informative posts, you do make me think a lot :-)
Marisa, I am the world's biggest claustrophobe. I was stoned like the lady in 16 Candles during my MRI. ;-) Radiation is no big deal. Cami is right, you just lay there and the machine moves around you. When you are getting ready to start (first visit) they do what is called a CT simulation, but your head is sticking out of the tube. So you'll be fine. I found radiation to be a breeze. Just kind of annoying because you have to go every day. I was doing it during late winter in Indiana, so it was rough getting through some snow storms, but my little Saabaru has 4 wheel drive, so I made it!
Kathec, thanks for the congratulations. I'm thinking of treating myself to a Lumanara candle. Google them, they are so fantastic!
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SpecialK: Congrats on 3 years. Thank you for all your insights and wonderful stories.
Alaska angel: When I read posts from people like you it really inspires me. We're all in this together.thank you
Pbrain: Congrats on 1 yr
Marissa. Congrats on finishing chemo. Rads was a cakewalk for me compared to chemo. Good luck.0 -
bren - sent you a PM
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pbrain, thanks for the explanation. It is important to try to limit the original testing to the group most likely to benefit.
What is troubling is that the use of trastuzumab under that policy was actually given originally to only metastatic patients, who have a larger tumor burden than early stage patients do. When they then later did a trial that offered the therapy to adjuvant patients, they eliminated the arm of the trial that offered trastuzumab used alone.
Theoretically at least, trastuzumab might work well w/o chemo for a group that has a smaller tumor burden.
Here's the trial information for the groups with mets who originally received trastuzumab:
1995
Genentech began enrollment of the Phase III pivotal trials for patients with HER2 over-expressing metastatic breast cancer.
- Pivotal trial 648, double-blind, placebo-controlled study of the investigational anti-HER2 antibody plus chemotherapy to include 450 women with newly diagnosed metastatic breast cancer
- Trial 649, study of the investigational anti-HER2 antibody as a single agent to include 200 women whose metastatic disease had failed to respond to one or two rounds of chemotherapy
- Trial 650, study of the investigational anti-HER2 antibody to include 200 women who had newly diagnosed metastatic breast cancer but did not want chemotherapy
When it comes to the value of chemo used without OA or other hormonal treatments vs OA, Adjuvant Online shows the following bit of information about chemo used alone as part of a discussion about the value of OA with tamoxifen versus OA without tamoxifen :
Comparisons of Combined Hormonal Therapy to Chemotherapy
There are small trials comparing combined hormonal therapy with CMF, FEC, and FAC (8,9,10), which showed apparently equal outcomes between combined therapy and chemotherapy. However, these trials were small in size (700 patients in all three combined) and had only modest statistical power. The largest trial yet reported examining this question had results that might be interpreted as suggesting particular value for combined hormonal therapy. The Austrian Trial 5 (11) (reported at 5 years follow-up and enrolling 1023 premenopausal, ER positive, women) shows a very striking superiority of 3 years of goserelin plus 5 years of tamoxifen over six cycles of cyclophosphamide, methotrexate, and fluorouracil (CMF IV on a Day 1 and 8 schedule every 28 days). At a 60-month median follow-up RFS was 81% for the endocrine group and 76% for the group getting chemotherapy, and a multivariate analysis was done that showed that a hazard ratio of 1.4 for relapse favoring the combination of goserelin and tamoxifen. There was a similar degree of benefit with OS improved with a RR of 1.3 (although perhaps because of the low number of events this did not reach statistical significance). This degree of benefit for the hormone combination over CMF seems larger than might have been expected for either ovarian ablation or tamoxifen alone and thus this trial might be used to argue for the particular benefit of combined hormonal therapy.
From: http://www.adjuvantonline.com/breasthelp0306/OvarianAblationCombinedWithOtherHormonal.html
Continuing, from Adjuvant Online discussion limited to comparing OA alone versus OA + tamoxifen:
Summary:
Adjuvant! estimates that the effectiveness of the combination of Ovarian Ablation with other hormonal therapies is no different in effectiveness that tamoxifen alone. This is a conservative view (supportive of the completion of the SOFT trial) and as stated above this view can and is reasonably disagreed with by some.
(I'm not terrific at this stuff, so anyone who has a better grasp is welcome to add their 2 cents.)
A.A.
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