TRIPLE POSITIVE GROUP
Comments
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Camillegal,
Namaste.......It's the best word I can think of right now...0 -
Oh Ashla u'r another one that's always been so kind to me, I so appreciate it. I have met so many wonderful people here it just amazes me.
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There was a study that found that those who reoccurred later (after 5/10 years) tended to be lower grade. It would seem HER2+ tumors tend to be higher grade (and a few mid grade) we tend to recur early, like in the first 5 years.
camillegal ♥ ♥ ♥ hand in there. And tell those organs to stay in place.
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Stanford seeks breast-cancer patients to participate in online-video support group
BY HOLLY MACCORMICK
The Sierra-Stanford Partnership is seeking women who have been diagnosed with breast cancer to participate in a study of the effectiveness of support groups conducted via online video.
The randomized clinical trial is designed to help researchers determine whether this type of video-mediated support group improves the well-being and quality of life of breast-cancer patients who live in rural areas. The study also aims to determine whether participants consider the approach feasible and satisfactory.
Half of the patients in the study will participate in a virtual support group; the other half, the control group, will not participate in any kind of support group. All will receive a workbook and will complete questionnaires via a secure Internet link. Volunteers for the study must be 21 or older; have been diagnosed with breast cancer within the past five years; and live in one of 27 specified rural California counties, excluding the following cities: Chico, Madera, Redding, Rocklin, Roseville and Yuba City. For more exclusion and inclusion criteria, visit http://oneineightsupport.org."
http://med.stanford.edu/ism/2013/july/rural.html0 -
Thanks Lago, I just look forward to all of this being over with.
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AlaskaAngel - that is really sobering about Her2 and tamoxifen. That's news to me- I will look through PubMed, but any study reference would be helpful. I was Her2+ and Grade 2, so even more of a crapshoot. Thanks for the insight.
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Camille, you have certainly been through a lot. Wishing you the best possible outcome with your appt today.
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Best wishes Cami. Get those organs back where they belong. You know our thoughts are with you!
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camillegal - hope your appointment/exam goes well and that a solution can be found that is not too difficult.
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camillegal,
Best wishes for getting it over with and behind you, and brighter days ahead.
A.A.
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cami - best wishes from canada
kayb - i met someone here (from canada) who did FEC with Herceptin - and had a complete response, protocols are changing all the time i guess. I didnt think they would give H with E. I think ashla did TCH
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geewhiz and all,
Some people here are not uncomplicated early stage HER2-positive, and the choices are not the same as they are for uncomplicated early stage HER2-positives, so I want to make it clear that my reservations about doing chemotherapy apply to uncomplicated early stage HER2-positive bc.
The maor problem is that toxic treatment has crept more and more into the group least likely to recur. At the same time, there is NO acknowledgement of just how much toxic treatment like chemo contributes to recurrence. If science can't put an exact number to that increased risk as part of the risk calculators, then it is up to us to understand on our own that it IS there. For those with very early stage uncomplicated HER2-positive bc, it is less clear that by doing chemotherapy the risk is equal to or greater than not doing chemotherapy for that group.
For example, for many of not most, treatment brings on weight gain that then contributes to recurrence, yet treatment is based on pre-treatment weight without calculating in the added risk for the weight gain that frequently is the result of treatment. This is where providers are unable to be truly "honest" with patients about risk vs benefit when offering what they and the patient see as being protective yet in fact is overwhelmingly overkill therapy for the vast majority of these patients, and even though for some that toxic therapy still will not work. It is easier for providers (who are not taking the risk themselves) to play it safe and advise the toxic therapy.
Another problem is the question of tamoxifen as the alternative when it comes to HER2-positives, since there are indicates that outcomes are worse for somewhere between 1/4 and 1/3 of HER2-positives who take the tamoxifen -- but there are many who are pre or perimenopausal who would not yet benefit from aromatase inhibitors as an alternative.
A.A.
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I want to add just another comment based on my personal and very individual circumstances in regard to tamoxifen. I discussed it earlier somewhere far back in this thread. I had very dense breasts after completion of chemotherapy, including after completion of the subsequent course of radiation. After just 3 months of use of tamoxifen, the density disappeared. I think that likely was the result of the tamoxifen, and may have been an indicator (as suggested more recently by the Karolinsky Institute studies on tamoxifen and breast density) that I happened to be someone for whom tamoxifen works well. If so, then density may be an effective indicator for limiting the duration of use of tamoxifen. I dropped my dose by half during the second year I was taking it, and then dropped off it entirely after just 3/4 of that year. It may have made a real difference for me, in reducing the additional risk that is there for 1/4 to 1/3 of all HER2 positives. So duration of use may be limited but effective for some like me, and contraindicated for long term use.
A.A.
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Kayb,
Rozem is correct...I had TCH...T being taxol
So you know that it was the FEC that gave you the superb reponse. I will never know. As I previously posted , I had a long talk with my mo about my dense breasts and hair loss and he kinda said he might switch me over to tamoxifen in a year if we still have issues with both. Interesting though was our discussion of the Karolinska study..which for those unfamiliar..showed that if tamoxifen. was effective..breast density decreased.
He said you would have thought that the medical community would have NOTICED the correlation sooner!0 -
Blessings to you Camillegal! I pray everything gets put where it belongs and you heal quickly!
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How exercise effects your cells and even how our genes operate.....http://well.blogs.nytimes.com/2013/07/31/how-exercise-changes-fat-and-muscle-cells/?ref=health
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I agree. If I as a patient wondered about the correlation at the time, why does it take so long for medical providers to seriously consider the relationship between breast density and tamoxifen....
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Camille, Thoughts and prayers for good news today. Sending you a big hug.. Eileen
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Just want to answer some questions that came up regarding this chemo for HER2. I'm 59, post menopausal. When my breast surgeon first suggested I'd be a good candidate for chemo I asked him why and he said I was young, and he thought I'd be someone that would want to say "I did all I could". I thought that was strange reasoning because (a) I wouldn't consider myself young and (b) I would be more likely to berate myself for pointlessly poisoning my body rather than feeling I'd done the right thing.
I don't know why I got the endrometrial and breast cancers all at the same time. It's been a very weird year and everything's happened in a whirlwind. I wouldn't even have discovered the endrometrial as soon as I did had I not had an MRI for my back. I guess we all try to look for guilty parties when these things happen because we like to think there are ways to avoid it. I tend to look at the fact I was on birth control in my youth, did fertility treatments for my second marriage and was on hrt post menopause, but who knows? My oncologist won't even go there with that question and he's right, of course, what's the point? I'm hoping, at least, it means I'm not positive for BRACHA because I have a sweet twelve year old daughter.
I must say, you guys have really done your homework and are much more savvy about it all than I am at this point. I'll keep reading and learning.
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AA - those of us pre-meno at the time of diagnosis who become menopausal after also have a decrease in breast density, its not just the tamoxifen. Thats why mammos work better in post meno women because your breasts naturally get less dense as you age and go through meno
i know it is very difficult to come to terms with chemo esp very early stage (i guess thats what you mean by uncomplicated her2 AA?) but the studies do tell us that for a woman who has the exact same early stage diagosis (stage 1, no nodes) as a her 2 neg woman - the one with the her2 positive tumor does have a higher risk of reaccurance - i think its like 25% for stage 1 her2 (with no treatment - and yes this varies within the stage 1 class by size of tumor) vs 10% for stage 1 her2 neg - dont quote me on the stats but i remember it being 10-15% worse survival for stg 1. That number may not be significant enough for some and very significant to others. I guess those of us stg 2 or higher pretty much had that decision made for us. No easy decisions in this journey
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Sooo got my Vitamin d test back...25.1 now seeing if I can get Vitamin D during chemo? What u all think!
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Camille--- Thinking of you. ((((Hugs))))
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Cami, hoping for good things for you at your apt today.
Goutlae, my MO let me take D during tx.
In regards to tx for uncomplicated dx, that would have been me. Stage 0 before my bmx, stage
1 after. No nodes. Small tumor, 1.6. BUT I WOULD HAVE FOUGHT FOR CHEMO! If my MO had not recommended it. My mom had the same Dx,(except her2 not discovered yet) and died 7 years later total mets. because she had no chemo, cause she had, UNCOMPLICATED cancer small tumor no nodes, they told her she didn't need it. turns out, it probably would have helped. But we'll never really know. so I come from it at a different angle. I was 58 at Dx, post menopausal, breastfed 4 kids for two years each. And I knew what I would do if ever I was dc with BC. just another view.0 -
Hi everyone ~
Whew...it's taken me a good portion of last night and this morning (on and off) to get caught up.
Ashla, I now have sixteen, yes, SIXTEEN tabs open to go back to later today. Thanks for posting all the great links. OCD me wanted to get through all of the thread so I had to just keep opening one tab after another.
Camillegal, I hope everything is going well today! You (and your recalcitrant organs) are in my thoughts and prayers.
ChickaD, I hope you're feeling better and so happy to read that you're close to the end of chemo.
SpecialK, it sounds like you had a great time on the other side of the pond!
lago, I've wondered more than once how things turned out with the area near your ear (if that's been posted I missed it).
Someone mentioned Herceptin prior to starting chemotherapy and yes, that's how my oncologist started me off and he's done it for one other person that I know of as well. It was a loading dose three weeks prior to starting the regular TCH regimen.
Pbrain, happy belated birthday and you've been through a war! I think it's easy for people to forget that when they haven't been there in the trenches with you during each and every intense battle that it takes to win the war.
Jenn and Cypher, congratulations on the clean test results.
Rozem, ((hugs)) and I've been wondering if you've exchanged out your TEs yet.
TonLee, I had a feeling the bad guys would be quaking in their boots when confronted with your tenacious bad a$$ self (and I mean that in a good way - a VERY good way).
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As for me, on June 7 my husband and I were hit with the shock of him being laid off from his position with the same firm for 11.5 years. He was part of a RIF (a reduction in force). I didn't think anything could stop me from being OCD about breast cancer but lo and behold this has done the trick. I started radiation yesterday and as I had my arm up in the sling (or whatever it was) it hit me: "I haven't been OCD enough about BC lately!" Yep. Those were my thoughts. We're on the edge of perhaps doing an early retirement thing (both of us) and that's taken almost all my energy (i.e. house-hunting, new state hunting, readying the house to sell, etc.) but in the midst of all that I had both tissue expanders replaced. On top of all that there have been family problems so when it rains it pours and pours and then pours some more.
One thing's for certain: breast cancer doesn't mean every other life thing can be kept at bay. Heck, I'm starting to think it's a red flagged invitation for other "disasters" to come a-callin'
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FEC with Taxotere and Herceptin is the standard of care in Australia.
Cami - all the best to you for today - hoping when you come on next you can tell us all is well xoxox
Trish
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LeeA--- So good to here from you
Sorry about your husband's job. And house hunting in it self is exciting and draining at the same time.
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Yes thxs..doctor says I can take vitamin D..plus chemo kills ur D.level..anyhow on 2000 per day for now...hope that brings it up
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Yes thxs..doctor says I can take vitamin D..plus chemo kills ur D.level..anyhow on 2000 per day for now...hope that brings it up
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Wow LeeA ,
We've been so worried a bout you . Sorry about the job issue. I know it's very stressful especially when you're already dealing . Just know my husband and I were entrepreneurs and after we dealt with not one but two fires in the building that housed our business ..I said..I ain't starting over again here. We sold the business, the house and got outta dodge. Went to a place wher e the cost of living was much lower.
We decided to retire! If that hadn't happened we would still be there like rats in a maze.
Welcome back. You were really missed!0 -
Hi Miss Lee...glad to see ya, but sad about hubby and family problems....I have been off work since March without paycheck and getting very nervous about money...it sucks...I dont know how single gals can deal with this...thank God my hubby is keeping our lives together...hugs
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