MIDDLE-AGED WOMEN 40-60ish

elimar86861

Hi, Grazy! So, they did the Oncotyping on you, and you fell into a kind of grey area. Were your ER+/PR+ percentages really high? I guess what I am asking is what prompted you to say no to chemo? My Onco score was 18 and more risk than benefit with chemo so it took me about 2 seconds to pass on it as well.

p.s. Does your screen name rhyme with crazy, snazzy or hotsie?

sheila888

Just checking in to say HI

Grazy

Hi elimar,

"Hotsie", yes, that would be a good one with the heat the AI has returned to my body after already 'menopausing' for five years (and which has awoken me now at 3:30 a.m. to peel off drenched, cold pjs), and now I'm here posting before I, hopefully, go back to sleep for a couple more hours; Snazzy - I am, occasionally, hahaa; but Grazy rhymes with Crazy - yep, that's the truth! Play on my maiden name.

In answer to your question, my MO recommended the Oncotype test - I had expected around a 15 (not sure why, exactly) and was surprised to roll in at 21. I had the number 25 in my head as a cue to do chemo, but 21 worried my husband and me a little bit so I consulted several oncologists who all felt the risks weren't worth the benefit. One said I could do chemo if I wanted for peace of mind, but he didn't feel it was necessary, all the other said they wouldn't recommend it. (My husband works in the oncology world so his connections finally came in handy.) My own MO also did not want to recommend chemo and consulted with two of her colleagues who concurred. I felt pretty good about my decision to pass on chemo - the med oncs all feel I'm getting great protection with rads, the AI and (upcoming) Zometa.

My ER+/PR+ percentages were, 98 and 60, respectively. My MO felt the 98% ER+ would be a good match for the AI.

I see you were diagnosed back in 2009. I started Arimidex two weeks before rads, which I'm happy to say are all done tomorrow, and I've had a very easy go of it!

elimar86861

Well, Grazy, congrats on sailing right thru' your rads and glad you got off easy. It sounds like you went in for more that the 3-wk "Canadian protocol" then, but still got a shorter sentence than the ~33 visits that most of U.S. women get. How many total blasts did you end up getting?

Hi, Sheila! I'm glad you popped in to brighten up the place with your flower.

Grazy

Hi elimar - I got the 3 weeks of whole breast treatments (so the typical [Canadian] 16 trmts) plus 5 boosts, which I'm doing this week, so ended up with four weeks total. It went so fast. I'm just now this week showing some mild skin effects - lucky that I get to finish up tomorrow!

elimar86861

Do you have post-BC fear or fatigue? Do you have $200?

https://www.yahoo.com/news/mindfulness-program-may-reduce-fear-fatigue-cancer-survivors-185702351.html?ref=gs

ARCats

Grazy, I'm glad for you that your done with radiation. I didn't do so bad besides a little fatigue and a suntan. All I had to do was go skinny dipping and I would've had a beautiful matching pair. But I'm to much of a prude to do that so I just waited for it to fade on its own.

You ladies are to much with all the new figures that we are blessed with. I'm more of the big stomach, knee knocking, losing sleep and no butt, but I still have my hearing, and sometimes my eyesight. All I want to do is to be able to zumba again; if nothing else I can dream about it, and I guess in the long run it's easier on the knees.

Happy thoughts.

barbe1958

Grazy, I'm in Southwestern Ontario. Where are you? I got my rads in Windsor and burned so bad I was bleeding. I have olive skin and never sunburn so it was a bit of a shock, but they warned me. I got 9,500 grays and the "normal" is 5-6,000 so they expected it, but I didn't.

I work in Tilbury (recently Chatham) but live in Ridgetown.

Grazy

barbe, I'm in KW. What a terrible experience you had with rads, I'm so sorry you went through that. Experiences run the gamut on here, I have sure learned while visiting various boards...

elimar86861

AS SEEN ON T.V.!

Well, I just did a search and no one seems to be mentioning this...

I had the t.v. on and saw a law firm ad trying to drum up business for a class action suit for people who had permanent hair loss from using Taxotere. I wonder how many that is? I never had to take any of that, but I know a LOT of BC women have been on it. My mom took it for almost a year but her hair seemed to come back to regular thin old lady hair. I do NOT know how I feel about the permanent hair loss complaint. Of course it is terrible, but I think the hair loss side effect is pretty well known, as so many cancer-bald ladies are out there. Maybe the Taxotere manufacturers and docs are downplaying the possibility of the permanent hair loss as compared to the temporary? I'm not quite sure what makes it lawsuit worthy?

My thoughts also turned to wondering if I would see a legal ad for permanent neuropathy from the platinum chemos? That's another thing so under-reported that many, including myself, are left with. That SE was mentioned to me in a sentence with the word temporary, but I have weird numb feet three years PFC. I am getting a tiny bit better all the time tho', so maybe in six or seven more years I won't have it. Oh, yay! For people left with CIPN, the hair thing seems a bit frivolous. For that matter, if anyone got heart or lung SEs from rads, the whole hair thing just pales in comparison. So the Taxotere thing I saw is a little baffling.

General thoughts? Any got the permanent hair loss? Any plaintiffs out there care to comment?

MinusTwo

Elimar - I was warned that I would lose my hair with Taxotere, but never told that it might be permanent. Thank heavens it wasn't. I do know a member who has permanent hair loss so I'll forward that there appears to be a suit.

I'm with you about the neuropathy. I was never told that could be permanent either, and here I am 2-1/2 years PFC and my feet are still like blocks of ice.

And while we're at it - I was never warned about lymphadema either. And that got me also. Sigh.

But I'm not litigatious. And a law suit wouldn't make anything better anyway.

I'm angry that I wasn't warned about all these things, but that's mainly because I'm a control freak and always want to know everything about what might happen. Before round 5 when I had "just a little numbness" my MO did give me the choice to go ahead or quit. I didn't have a lot of choices with ER/PR negative and even then, the chemo didn't destroy the tumor.

sheila888

Elimar..i had 4 rounds of taxotere every 3 weeks with my second diagnosis....

My last dose was February 1..my hair is growing fine salt and pepper actually i like it...

hugs

sheila

elimar86861

MTwo, yes, I almost expect a CIPN lawsuit or (as you reminded) a lymphedema lawsuit to pop up because I don't think women are getting the full story on those up front before all the chemo and, of the three, I have to say permanent hair loss seems the least bothersome.

Sheila, You got lucky with the regrowth; but if you have any follicly-challenged BC buddies, you might tell them to look out for that t.v. ad. It won't bring the hair back but maybe they could buy a wig or two with the settlement. (Of course, the case has to be won--or settled--first.)

Loral

Here in Michigan the ad runs around the clock...Call Mike if you have permanent hair loss from Taxotere...

I didn't have chemo and really don't know what to think about the suit...I take Tamoxifen and it causes cancer...

barbe1958

I take Arimidex and it causes hair thinning, but if I don't take it, it causes death. Hmmm, what to do?

Loral

Yep...By the way you look beautiful....Great pic.

Dianarose

Haven't been here in a long time. Was trying to do as much living as possible. Staying in denial and actually feeling good. Well we all know how one dam trip to our MO can change that😩. Over the past year my ca 27-29 went up to 41. The 15 was fine. Six months later the same. Last week 68 and 70. I have no symptoms. Having a PET scan next week. Not sure what they will find as my cancer never showed on the scan when my breast was full of cancer. I know benign breast issues can cause a rise in markers but I don't have any breasts. When I find any posts about tumor markers they seem to be several years old. If the scan finds something how to they determine if it's mets or a new cancer? Any input would be appreciated. Hope everyone is enjoying summer🌞

elimar86861

Dianarose, that is a bummer that the markers are on the rise. It sounds like you are only getting them checked every six mos. then. (My Stage IV BFF has hers done about every month or two. Recently she had gone up from 41 to 58, but then went back down to 52.) Maybe because yours was a bit more of a jump they want to check with a scan. The scans are much more precise than the marker numbers anyway, so may as well find out for sure and not just guess about those numbers, right?

The PET scan will show any areas of concern and I am sure you have several older ones that it can be compared to so you will know if there are new areas of involvement or not. You have been on Aromasin for a few years now. This may be a signal that it is time to switch to something else if it is not being effective anymore.. Or, the PET scan may show there is nothing significant going on and that is what I am hoping for you. Please let us know what you find out from the PET, cause we are going to be sitting around worrying about you.

elimar86861

From the Tell Us Something We Don't Know Dept.:

http://www.huffingtonpost.com/the-conversation-us/are-you-getting-the-best_b_10410392.html?ncid=txtlnkusaolp00000592

elimar86861

Look, it's a bar of ugly new pictures at the top. Guess people were not searching out the topics that BCO has to offer, so it's a new in your face approach. You just know someone got a big congrats for that suggestion. Tweak, tweak, tweak.

NativeMainer

El--great article, thanks for sharing!

elimar86861

Re: that linked article above.

NativeMainer is a nurse. She has seen it all from the inside out.

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Today, my spirit is lifted. On my walk this morning, my SHADOW looked just like a TEENAGER!!!

MinusTwo

Elimar - you got me sidetracked looking at shadow poems & quotes. What fun!! I'm going to be looking for my shadow this week.

barbe1958

Dianarose, nice to see you again!!! I remember when Marybe was really, really sick and her markers were up to like, 3,600. Is a small jump a true indicator of cancer or only of "something" happening in your body; low-grade fever, allergies, infection, etc?????

elimar86861

MT, Those morning and evening walks make the most marvelous shadows. You wind up looking just like a fashion design sketch---about 10 heads tall. Shadowy svelte...oh, la la!

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Wow, I made 7,000 posts now. That's an average of 1,000 per year. Gotta break it down:

2,000 about how doctors let me down.

200 about how doctors did right by me.

700 where I mention Cheetos.

15 where I laugh about labyrinths.

1200 where everyone laughed with me.

600 where everyone laughed at me.

100 where I was teary as I was writing.

10 where people took umbrage.

5 where Moderators busted me.

965 where new Middies were welcomed.

10 final goodbyes (could have been way more.)

1,100 weird, wacky and wonderful pictures.

75 about hot flashes.

21 that were a little risque.

1 THIS one.

(I think that's about it. Now, get out your calculators and let me know how bad I am with arithmetic.)

Dianarose

Barbe- I have tried to find documentation on what else could cause both markers to go up and nothing that indicates, allergies, stress, etc... Frustrating. I try to hope for the best but prepare for the worst. I have no symptoms other then these marker tests. Went to 41, did it six months later and still 41, now one is 68 and the other 70. They claim it doesn't do any good to find mets before symptoms so why the hell to they look for them? So confusing. Hope you are doing well.

barbe1958

Dianarose, I'm stage IV now. Like you say, why check with markers if they aren't going to make a difference? My new onc says we just have to watch to see where my cancer lands next. He hopes to get a year out of Arimidex before I'll have to change.

Prayers being sent your way, sweetie. Please keep us posted.

Dianarose

Barbe- sorry about your stage IV 😢. Did you have symptoms? I hate this crap. I feel great but yet there is something going on. I am not a fan of scans. Haven't had one since 2013. If all they are going to do is change my meds why the scan. Thank Hod for Xanax

barbe1958

I had a lump that was first biopsied as benign so I bought a car and changed my job. I asked for the lump to come out anyway, just for peace of mind, and two days after starting my new job I found out I was stage IV!!!

Dianarose

Barbe- sorry, that sucks. We must be related. The cancer center gave me a MED certificate and 3 weeks later told me I was stage IV. Do theydo the tumor marker tests on you. Debating on continuing as they are so stressful. I don't like ct scans as I feel like I can't breathe so he ordered the PET scan. He said it is easier to get measurements with the ct scan. Does it really matter? Such a crazy life we live now.