I say yes, you say no, OR People are Strange

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  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited April 2014

    Thanks Sunny ... that's my natural hair color.  Used to be red, now it's white.

    Suzie ... Easter is this weekend here too.  Many people have Good Friday off as well.

    hugs,

    Bren

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2014

    Thanks Bren - we have Friday and Monday off - I need it - had a chest cold for 2 weeks now

  • pip57
    pip57 Member Posts: 12,401
    edited April 2014

    Suzie...the problem with "clear" scans is that they don't always sow everything.  I have seen too many women with good scans dx with mets a couple of months later.  And they were only found then because of symptoms.   A false sense of security is fine for some.  But I like the river denile.  

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2014

    True Pip - our onc agreed with me and thought that Steve's lung mets had been there at the start but it took 4 years to be big enough to show on the CT scan. The chemo he had could also have kept it small. But he had no symptoms at all.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited April 2014

    Really, I thought the reason scans weren't routinely done was because finding out early, versus later, makes little difference in longterm survivability.  I think the only argument I've seen to the contrary is if they catch a bone lesion earlier, they might be able to prevent potential bone damage.  

    A couple of weeks ago I took a bad fall - mostly to my left knee and right elbow and my glasses broke, but now I've just found a sore lump on my forehead - damn, just after seeing the MO.  Now should I worry this is cancer or one of the bruises I got from that fall?

    I like DENILE too until something stares me in the face, then I want to eliminate!

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2014

    Kam - the reason is because of the radiation versus the chance of mets - the radiation is too high to make it worth it. In Steve's case the chance of mets was much higher than my breast cancer, given it was in the rectum and lymph nodes. I do get the unspoken message, that there is not much chance they will save you even if it is found earlier, but in Steve's case - wow - 11 years out from the primary and going strong.

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited April 2014

    Kam, I don't have much to add.  I look on every day I have as a gift....so on those days I have a Oncology appt. if the numbers are good it means there is an extra bow on the package that day.   I guess it is a sort of denial, but just seems to me that there is not a lot we can actually do.  We don't get the choice of picking how any of this is going to go so I try to be grateful for the good days and hope that if some day they are not.....that I can deal with it too.  

    Jackie

  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited April 2014
  • GatorGal
    GatorGal Member Posts: 2,550
    edited April 2014

    I would definitely take whatever AI's for however long.  One year after I stopped femara is when my mets showed up.  It was nearly 20 years.  I still wonder if I had stayed on the femara, which other than weight gain caused no side effects, would I still be clear??

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited April 2014

    Well, in between yard work on this bright sunny day, I've been doing some googling about AIs and specifically, about some research done on "natural" AIs, including bioflavonoids, lignans, peptides etc.

    It turns out, according to studies done via the NIH, that flavonoids (bio- or otherwise) do actually have some ability to inhibit aromatase, which we hormone+ gals are dealing with.  Rather than "try" to c/p a list of foods with those properties (which I can't do anyhow), I invite you to google "Foods containing flavonoids" and several sites will pop up.

    I live in wine-making country, and a few years ago, one of our organic wineries, Southbrook, started selling a powdered product called Bioflavia.  It uses the leftover skins of grapes to make this wonderful, flavonoid-rich powder that can be used in smoothies or baked goods.  The winery's owner has a deal with all the other wineries in the area to supply him with the skins.  And the interesting thing is that the name of the product not only reflects the product itself, but Flavia was the name of the owner's mother (whom I knew many years ago!).  BTW, for Canadian gals, it can now be purchased in Loblaw's, Zehr's etc.

    So, I faithfully add Bioflavia to my morning smoothie, and I eat loads of onion, garlic, berries etc. -- so maybe I really don't need Femara (fingers crossed!!!).

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited April 2014

    Glenna - 20 years since your first dx??  If the studies come in for AIs for 10 years, my MO is definitely telling me to do them 5 more years.  BC and menopause hit me at the same time, so I'm not sure which one (menopause or AI's) are causing  the most problems (the typical ones).  I'll go with 5 more years, if I get that chance.  Aggressive cancer, though luminal B - so AIs might not even be helping at all, though.

    Another topic - if Hannity et al think the government is stepping on Rancher Bundy's rights, what about those ranchers/farmers in the midwest who are having their land condemned for the Keystone pipeline?  Does it work both ways (though I'm not all saying they are comparable, but Hannity's logic system, he is)???

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2014

    Glenna - just a sense it was probably more of a coincidence, horrible as it is, that the beast returned after you stopped femara, so hard to tell.  But know as we get older, the idea of staying on them "forever" is very complex.

    Kam - never did find out if I was "luminal B" or not, was that on your pathology. 

  • pip57
    pip57 Member Posts: 12,401
    edited April 2014

    Yes KAM....the studies do show that there is no significance in treating mets earlier.  They say that mets are an entirely different beast than the original cancer and does not react the same to tx.  

    Lovely day here.  We live in a cottage town and the Main Street stores are packed today.  The water is  beautiful but the levels are very high.  Our dock is covered. 

  • GatorGal
    GatorGal Member Posts: 2,550
    edited April 2014

    Kam, yes, original diagnosis was in October of 1987, mets presented in May 2008.  And yes, the stage IV mets may have been a coincidence ... I'll never know.  I was on tamoxifen for a number of years and then femara.  I honestly don't know how long I was on them but it was a lot of years!  In 1987 I had lymph node involvement and participated in a clinical trial through Hopkins.  My prognosis was not good.  I did go through chemo induced menopause and had some pretty wild side effects .... Including some pretty manic tantrums.  Wish I had known it was menopause .... I was so ashamed of my tantrums I never mentioned any of it to my doctor!  I could have gotten some help!! Then in January of 1989 I presented with a totally separate lung cancer followed by a lobectomy.  And how many times did I hear "this is unusual."  LOL!   Glad to be here today and yes, every day is a gift.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2014

    Glenna - we are glad you are here with us - you are a miracle!!!

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2014

    OMG - Steve suggested we do a big chop in the garden this weekend as he wants to give his cousin back his trailer. WELL - guess who filled the trailer - he hasn't moved from his computer screen all weekend except for a bike ride on Friday. I want a trailer like that - it is so cool - has high sides on it.

    I am really getting passed it - big trouble with knee pain - the one that needs replacing. I think my time is up - I've been avoiding it for 14 years.

    Anyway, I actually had a swim when I finished - just got wet and got out but boy it feels good.

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited April 2014

    Morning Gals,

    A long day ahead of me.  Have to take Tim down to NC to work.  It's a 2 1/2 hour drive one way.  Not looking forward to it.  I confess to still having a bit of jet lag.  I did have a bunch of work come in yesterday, so was busy getting that out.  Lots of mowing to do as well.  I mowed it all before I left and I cannot believe how fast the grass has grown!

    Glenna ... You are a miracle.  I'm so glad we're friends and you're a part of our group of sisters.

    Suzie ... Love hearing how Steve has overcome so much in his life!

    hugs,

    Bren

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2014

    Glenna - yikes!  You have been thru so much - whew, so good to have you here!  I wouldn't think a bit of the "menopausal" rages - we all had'em! A friend used to call them PMZ "post menopausal Zest."  

    Happy Easter all, hope the EB brings delicious chocolate ( thinking of bren with Malted Milk Eggs) ;-)

  • pip57
    pip57 Member Posts: 12,401
    edited April 2014

    Happy Easter ladies.   Remember, dark chocolate is GOOD for us!

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited April 2014

    Glenna - your story is amazing.  When you say "coincidence" do you mean your second BC dx could have been from a new primary? Hard to believe Mets 21 years later.   I wonder, have you ever been brca tested?  Lung cancer too?

    Sunny - Luminal B is a further subtyping of Luminal.  Luminal A is the better one to have.  Luminal B is ER+PR- Her2-.  Athena had Luminal B.  I think it also requires a high (>12%) Ki67, though I think that comes with the PR- territory, but I'm not sure.  I show PR+ on my sig because I was 5% IHC PR, though the lower half of the CI on the Oncotyping had me negative for PR.  The bugaboo for luminal B is that hormonals don't work as well (crap - but we still take them).  I saw a figure like only 20-30% of luminal B's benefit from those.  Chemo in the same territory, though I think that is true for all with chemo.  It was NOT on any of my path reports, but an interpretation from my doctor - ofcourse, I had to ask her to have her tell me about it.   She actually told me being triple positive is better than being luminal B when I saw her last - really, gads.

    Back to counting calories - no chocolate bunnies for me. :(   fyi - switched my Emma kitty to grain-free food and she started losing weight because she ate less.  Forget all of those fancy Vet Rx reduced calorie kibble food.  I suppose it works that way for humans too - quality foods are much more satisfying, so one eats less?

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited April 2014

    Kam ... I pigged out on chocolate this morning.  arghhh.  It felt so good going down ... not so much now.  I have 6 more pounds to lose to regain my target.  It sucks counting calories.  You have a lot more willpower than I do.

    hugs,

    Bren

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited April 2014

    I have to share a pic with all of you.  I snapped it while driving home from NC this afternoon.  I was laughing so hard at the horses with their heads out the window.  Just like over-grown dogs! The horses and trailer reminded me so much of our Enjoyful.  Hope she and Sampson are doing well.  I am impressed that I could actually take a picture with my phone and drive at the same time!

    hugs,

    Bren

    Suz ..Thought of you today when I was coming home from NC.  There were 3 horses in the trailer in front of me!

    PS .. Notice how green the trees are down in NC.  All the red bud trees and dogwoods are in full bloom as well as the wisteria.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited April 2014

    Oh my - that horse!!  I hope he doesn't get his head snapped off!  Ok, I've taken a few pictures while driving too, but I would never admit it Bren!! :)  I'm actually very diligent these days about my smart phone and driving - not worth it.

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited April 2014

    Kam ... usually I'm with you on the smart phone.  I rarely even use it while driving.  It's too dangerous.  Just had to get that picture though.  With my sunglasses on, I can't even see my phone and I've told Tim that I won't answer it while I'm driving.  Better to be safe than taking silly pictures going down the road!

    hugs,

    Bren

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2014

    Thanks Kam, my pathology didn't have a Ki67, and the Oncotype DX didn't measure it when I had it done in 2007.  Still remember the docs at Dana Farber saying the Arimidex in my case was even more important than the chemotherapy I had.  So maybe the analysis their lab did of the tumors ( you have to have a sample of he tumor sent to be treated there) told them something?

    Anyhow - watched some of the Sunday morning chattering folks - Debbie Wasserman-Schultz was the best.  An of course I'm so objective.  Kept referring to women like herself with bc, who had a pre-existing condition, but could still be covered by ACA.  Also happy to see them all emphasizing the more than 8,000,000 enrolled by now in ObamaCares.  Makes me laugh to think some deluded people still think this LAW can be repealed.

    Lovely sunny day here.  Managed to put in my sugar snap peas, about the only thing I grow which tolerates cold.  Still in the 20's at night.

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited April 2014

    I'm laughing with you Sunny.  About how many people are now covered ( of course, you must realize someone "doctored" the books" as well as the repeal.  It remains rather comical to me that these people walk around like they are in the know.....when they, especially in regard to repeal, are much more so in the know nothing much category.  They who don't know that they really DON'T know just end up looking and sounding so ridiculous.....big tip off when you can say so much of what they do with a straight face.  

    Hope everyone had a great Easter.

    (((/Glenna)))) just wow.  

    Jackie

  • GatorGal
    GatorGal Member Posts: 2,550
    edited April 2014

    Easter was busy but joyful! Had two of my adult kids and three grands over for an egg hunt and dinner. Wish the entire family could have been here but have to share our daughter now that she's got a fiancé!

    Kam, my 2008 tumor was compared to my 1987 breast tumor which they still had in storage. It was definitely a match. My onc said no question it was the same cancer and not a new primary. The staging was very different in 1987.    Hard to believe it could evade detection for so long. Never had brca testing.  No other BC in the family other than my aunt (dad's sister) who was in her 80's when she got it.  They have learned so much about BC, though still a long way to go. So many of the terms are  new to me.

    The doctors originally thought the lung cancer was a spread of the BC but after opinions from Hopkins, NIH and Anne Arundel medical center, determined it was a separate primary.  Surgically removed the lower lobe and no chemo.  

    Really tired on the carboplatin and the neuropathy is bothering me as well. Other than that, first treatment under my belt and feeling pretty good!  Sometimes I do feel like a miracle ... 🍀

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited April 2014

    Sunny - Generally speaking, hormonals are always considered more effective than chemotherapy in ER+ BC.  Ki67 is sometimes done during biopsies - I got lucky, my lab did it.  It is included in the Oncotype as one of the 21 factors, but not explicitly stated on the Oncotype report.   Ki67 does constitute an important part of the score and Oncotype can be proxied, partially, using Ki67.  I can't remember the other 3 factors for the proxy, but there are three others.  What was your oncoscore Sunny??

    Glenna - amazing, 21 years later.  What grade was your original tumor??  What chemos/treatments did you do from 2008 to 2012??   I found taxol gave me worse neuropathy than carboplatin, but hard to tell, since it was pile on at that point.  Definitely, carboplatin was easier to take than taxol, though my taxol was dose dense and carboplatin wasn't.

  • GatorGal
    GatorGal Member Posts: 2,550
    edited April 2014

    Kam, the only thing I could find on the original tumor was T1N1, stage IIB.  No other staging.  I had lymph node involvement and my prognosis at the time was 15% chance of 5 year survival.  I showed them!  My doctor had missed all the signs of BC, including palpable lump, for 15 months.  Nothing ever showed up on mammos due to dense breasts.  I was 37.  Had just adopted our two youngest ... Now 31 and 32.  Hallelujah!  I think my menopausal outbursts negatively impacted my daughter the most ... who knows but she is blaming me for all her adult issues.  

    Since the 2008 mets diagnosis I have tried Femara, arimidex, tamoxifen, xeloda,  fulvestrant, taxotere (docetaxel), gemzar, doxil, low dose taxol, cmf,  and now carboplatin.  I think that about covers it!  My neuropathy has never left me from the original treatments in 1987.  I had 4 chemo drugs:  cytoxan, methotrexate, adriamycin, and vincristine every other week and 5FU on the alternate weeks for 16 weeks.  It was rough but sure seemed to do the trick for me!!  

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited April 2014

    Wow .. Glenna ... that is a lot of treatments.  I hope the Carboplatin is kind to you while killing off those bastard cancer cells.  It's a shame your daughter, at her age, can't get some resolution.  I think my son went through a time when he wasn't very happy with me in his early 30's.  Thankfully, it seems he's let all that resentment go.  He just turned 38.  Sure hope your daughter comes to her senses and can find some understanding of what you were going through at the time.

    hugs,

    Bren

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