TRIPLE POSITIVE GROUP
Comments
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That sure helps Linda. During chemo, I had several on my leg, but dermatologist said no worries. Now, all of a sudden, I have about 8 or so. Most are tiny, a couple are larger. I think I will ask my onc to check it out just to make sure. he didn't order bloodwork in January when I saw him since my PCP had done a full workup in November, but I may ask him to run the basics for my peace of mind.....which is never at peace, lol.
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I noticed one on my trunk after the first chemo.
ETA1: I think they're called petechiae and they were mentioned in the cancer pamphlet/book I received.
ETA2: The book is called Chemotherapy and You and I just pulled up my pajama top to look and it appears to have faded somewhat.
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Fluffqueen,
I'm not sure if its the same thing, but I got a small blister like pimple on my port scar, near my 5th TCH treatment. It has faded, but has never gone away.
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Kay,
I agree antecdotal stories have their place...lol.
But as far as I've been told by the data my Onc receives from this trial, rising estrogen HASN'T been a SE at all, or in any significant percentage to even qualify as 1%. So that makes me wonder if your BCO friend's can actually be attributed to it. And more importantly, if she was in the trial if the data reflects it! But that's the whole point of the trials. To see if estrogen goes up, and if so, with how many women.
Personally, if I believed it could cause my estrogen levels to go up, I wouldn't take it. I don't think the data supports it at this time.
But who knows!
Just call me Guinea! lol
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Good morning to all you ladies,
LeeA, thanks for posting the info., about Thomas Seyfried's book, Cancer as a Metabolic Disease: On the Origin, Management and Prevention of Cancer. I shall buy that today and begin reading it.
Lago, fluffqueen01, and TonLee, re: having the blood test to determine if Tamoxifen is being metabolized well, my RO has the same view as all your doctors do, my MO, not as strongly; also, I am VERY paranoid/upset about having to take Tamoxifen, so I have to confess that I basically insisted very strongly that my MO conduct the test for me. Both doctors have made it clear that because I have tested 100% for being ER+, PR+, I must take some form of hormone treatment. I will begin with Tamoxifen on Valentine's Day.
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I don't know what my onc feels about the test but bases on what have read I doubt she supports it. She doesn't do tumor markers either. Feels they are unreliable. Also I'm not on Tamox. My onc put me on ESD (Estrogen Sucking Drug: Anastrozole) from the start because she believed I was so close to menopause age and family history that my ovaries were done. She tested for 5 months.
It just seems the percentage is small as far as those who don't metabolize, granted it might be a little higher with us triple positives but my gut says those who aren't metabolizing might be lowly positive (like me at ER 30%, PR 5%)
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Gratitude,
I'm not a big fan of Tamoxifen. I had my ovaries out in large part to avoid taking it. But I tried the AIs and the SE were so severe I literally couldn't bend over to unload the dishwasher for two weeks (bone pain in lower back). While I have constant pain now...it stays at a consistent level while on Tamoxifen.
My Onc is satisfied that Tamoxifen is as closely effective as an AI for women in my situation that if I choose, I can just stay on it..though he believes going to an AI will be better by a few percentages.
I'm kinda on the fence. AIs are really hard on the bones, while Tamox tends to BUILD bones up. I don't know if I want to risk my long term bone health for a few percentage points.
On the other hand, I've been lax in getting my pap though. So I could go in when I do finally schedule it and find out Tamox is causing other issues. But as of right now, it's all good. Well, if I am NOT one of the 1/3 of women it doesn't work for....
Geez.
Sometimes it really feels like a roll of the dice. Except I don't really want EITHER outcome...lol.
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I just checked my initial biopsy report. My last period was in 2003.
Estrogen = 62%
Progesterone = 7%
Her2 = 3+
Ki-67 = 40%
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LeeA - those hormonal percentages are your receptors - the percentage of cells (out of 100) that contained receptors, not levels.
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SpecialK, I consistently get those two mixed up!
I need to go back and look at my July 2012 blood test results because I'm pretty sure my gynecologist tested hormone levels (I remember seeing estradiol as well as testosterone on the print-out).
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hi ladies
hope all is well
tonlee - i am in agreement, I think i want to stay on tamox instead of switching to an AI for a few extra percentage points. I think i could switch to an AI at some pt because of the lupron shots but i don't want to risk bone loss - such a difficult decision. Im doing well on tamox (some joint pain but not that bad).
I just read a post about a new study that says lump+rads having higher survival then msx -you guys have probably seen it. There are a few threads going on this. Anyway one poster said that her thinking is that the msx ppl have a bigger surgery, and she was told that the anethestic they give lowers the immune system thereby making us more prone to reaccurance since our immune systems can't fight off any stray cancer cells. So now i am freaked out. I have never heard of this before???? anyone?????
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fluff - i had those, and dark spots and they all went away
my derm told me that we should be more vigilant with regards to melanoma if we've had BC ? maybe it was those of us who have had rads only (i will ask him next time)
those sound normal tho
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rozem - if you have read the other threads indications are that it is a flawed study
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Kay,
Guess we'll wait and see what the data says when it comes out.
I don't discount the potential that a DHEA vaginal insert may increase estrogen levels. I don't discount ANY potential SE of ANY drug. Maybe some women get headaches on it. Or facial hair. Or a purple vagina. As of right now though, the data (Which I have not seen but my Onc has) doesn't seem to indicate an issue with estrogen.
So I base my decision on the facts available at the time.
If the phase 3 trial comes back with data that says YES, estrogen, or facial hair, or a purple vagina, etc is a SE in ?% of women, I will revisit my decision.
Unless of course it's the purple vagina. That could be interesting.
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Hi TonLee,
I hear you loud and clear regarding preferring to maintain bone health, therefore sticking with Tamoxifen, if you can. I've had a bad day, just looking at the Tamoxifen prescription, staring at it, ended up taping it on the inside of a cupboard in the kitchen. I have been so brave and mostly accepting about all the other parts of the treatment, but my mind and body are just so not in sync with this hormonal treatment, which I understand FULLY, has been proven to increase our odds of not having this hideous disease again, but the SEs, the unknown, that, of course, is what is freaking me and lots of other gals out of their minds. I am going to try and go fill the prescription tomorrow. Feb., 14, my start date, will be here before I know it.
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You can do it Gratitude!
I'm praying for you!
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gratitudeforlife,
At the beginning of all this a friend of mine sent me an email and repeated what a woman had told her on the beach in Kauai:
Anything you do - go into it expecting the most favorable and best possible outcome.
That's become one of my mantras throughout this experience.
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Great quote LeeA - and just seeing the word Kauai made me feel all relaxed and happy!
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Ladies: Many are worried about the Arimidex (ALs) and the bone loss but if you insist on Dexa Scans once a year (as my primary care physician does), then you'll know if bone loss is occurring and act accordingly. None of this is easy!
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rozem no I never heard that. Every time I hear about some kind of treatment"lowers the immune system thereby making us more prone to recurrence since our immune systems can't fight off any stray cancer cells" it sounds like the anti treatment/white coat pro alternative treatment coalition. If you've ever gone and read the some of the alternative treatment places websites this is exactly what they promote.
If you have learned anything you know that one study doesn't make it so. I concur that many of us that did the MX/BMX had no choice because we had larger tumors, many tumors, etc. that has a higher risk of recurrence. Don't get sucked into someone else's "theory" not even mine. Talk to your onc to confirm everything your read here.
My BMX with TE was about 7-8 hours. Exchange with fat transfer 3 hours. nipple recon with fat transfer and revision 3.25 hours. Had general anesthesia for all 3 surgeries. I seem to be doing just fine as are many others.0 -
Gratitude, for what it’s worth, I’ve been on tamox for like 5 whole days and it doesn’t seem bothersome to me. Of course, that could be because I’m in the camp that it doesn’t work very well for.
Rozem, I don’t have a background in this kind of thing, but that doesn’t sound logical to me. Having the MX might lower your immune system temporarily, but the recurrence rates are long term rates, and I don’t know why having a more intensive surgery would impact your immune system once you’re recovered from the surgery. Anyway others have suggested that the radiation that we get when we do a lump makes the difference. One thought I had is that, a la Lago, maybe the MX people were self selecting as being higher risk for a recurrence anyway, that being part of the reason they went the MX route. I.e., multiple lumps or other diagnostic factors that suggested that MX was superior to lump in their case. Not well phrased, hope that makes sense.
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LeeA, that book looks interesting but it’s SO expensive. Oh well.
Re a ketogenic diet, that doesn’t look so healthy to me. Here’s a sample daily diet from them –
http://www.einstein.yu.edu/rechargetrial/page.aspx?id=3118
Also we actually DO need carbs to eat, so long term this isn’t so good for you. Perhaps it’s good while you’re in active treatment mode. I don’t know.
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Cypher....knock on wood and throw salt over your shoulder so you don't curse yourself to start having SE's!
Seriously....other than hot flashes and some occasional joint achiness, I am ok on Tamox. The hot flashes for me though are very intense and almost make me panicky....like I need to get out of my skin. I would take some joint pain over that any day.0 -
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Rozem - I saw that too about the MX more chance of recurrence - first off, it's not logical if you have the same tumor size, stage, node involvement, treatement as the LX. Unless, which I've heard some say - they feel that they don't have to worry about a recurrence of breast cancer any more because they don't have a breast - that's not true, they could get complacent and when they have that pain that doesn't go away, they don't go to the doctor sure that it's mets, like I would, with my MX. Also, ditto Lago and cypher - A lot of those of us that had a MX didn't have a choice because of tumor size, location, node involvement..... so that automatically makes us higher risk for recurrence. I feel that BCO did us a dis-service with the title of that article - very misleading!!!
LeeA - I read about the curcumin/biop.... I really want to order some, kind of spendy, but it does work out to about 75 cents a day, which is pretty inexpensive if you think about it. See my PCP in the morning it's on the list!!!!!
My grandparents used to do the ketogenic diet - I did go on it once, I think it's like the high protein/low carb diet kind of. Be careful - I did lose weight and fast, but got super shaky and couldn't sleep - because my EVERYTHING was out of whack. I still remember how awful I felt and that was like 30 years ago.
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Linda - the brand we use is Doctor's Best curcumin with bioperine. We order it from Amazon. We use the 500mg dose. A guy from another message board says it helps keep his rheumatoid arthritis in check. I can't wait to start taking it again!
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Thanks - Swanson Vitamin has Doctor's Best 1000 mg https://www.swansonvitamins.com/q?kw=best+curcumin+c3+complex
Is this the same thing Lee?
Thanks
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Going to see the orthopedic doc tomorrow for the pain in between my shoulder blade on the right side. Not sure if it is my neck/vertebrae or edge of scapula. Most of all, hoping it isn't spinal mets. But, it is time to find out. The only thing somewhat allowing me not to stress too much is that my pet scan was clear last fall. But that was almost 6 months ago. A lot can change in that time. Ugh. I hate all this.
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Linda, yep, that's it!
And seems like a good price; however, that's 1000 mg - not that there's anything wrong with that.
I also replied to you on the TCH thread just now.
I've always ordered 500 mg but that's a pretty good deal and since I usually take 2 or more per day (when I can take it, that is) 1000 mg would be fine.
The only reason I can think of for starting out with 500 mg would be to make sure it doesn't bother you for some reason - although I can't think of any reason why it would!
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Thanks on both LeeA - I couldn't remember which one we were chatting about it on.
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I posted it both places just to make sure!
That company (Doctor's Best) should hire me as a spokesperson! Ha ha, I could be like the wife in The Truman Show "Why don't you let me fix you some of this Mococoa drink, all natural cocoa beans from the upper slopes of Mount Nicaragua."
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