TRIPLE POSITIVE GROUP
Comments
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http://www.medscape.com/viewarticle/759969
CG,
I didn't look at the link Jenn posted, but unless it came out in the last few months and is NEW news....I believe the test (CYP2D6) is NOT reliable (see link above). As of right now, there are no reliable tests to tell if Tamoxifen is working, short of ER+ BC returning.
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hi ladies
hope all is well....just checking in to see how everyone is doing
tamox - i take it at night in hopes of sleeping through the hot flashes. I did mention this but if your hot flashes disappear like mine did and you are pre-meno that may be a sign that the ovaries are kicking in again. I had my first period about 3 months after my hot flashes just magically disappeared
i was told the CYP2D6 was not reliable which is why i pushed for the lupron after my periods came back...to tonlee's point - how do we know the tamox is working
i was just reading that lupron can only be given for a specific amount of time...has anyone heard/read this? am i doomed to an ooph? i just can't handle another surgery right now
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Roze,
There is also another shot, not Lupron but can't think of it right now..a lady in my BC group here takes it. She couldn't tolerate the Lupron headaches. So there IS an alternative!
Lago,
haha...thanks, I am flattered you think I am a body builder, though the athletes in the sport will take umbrage! I am not as fit as I was pre BC, no more 6 pack (but no one has ever mistaken me for a body builder
. Now, at this stage in my life I'd classify fitness as a hobby. I lift two days a week....and often it is body weight combined with hand weights when I can't get to the gym. I doubt my routine is much different than a majority of the women who have one here 
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TonLee and Rozem, it IS new news out of Mayo Clinic...
Jenn0 -
Thanks Jenn....I'm going to check it out!
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I couldn't get that link to work, it asked for login info.
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http://consumer.healthday.com/Article.asp?AID=671970
I believe this is it in a nutshell....the official study isn't out yet...
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thanks jenn...i see my MO next month and will ask her. I can't keep up with all this some days!!!!
off to yoga....
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I can't wait to read it, and see how they address this:
"CYP2D6 testing is controversial because several large studies found that an abnormal CYP2D6 enzyme didn’t affect tamoxifen’s effectiveness."
http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen
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Ha anyone tried hypnosis to help reduce hot flashes?
"Hypnosis is an effective treatment for menopause-related hot flashes and night sweats, new research finds.
The alternative therapy reduced hot flashes by as much as 74% in the study conducted by researchers at Baylor University's Mind-Body Medicine Research Laboratory and funded by the National Institutes of Health....
In an earlier study, Elkins and his Baylor colleagues showed that hypnosis dramatically reduced hot flash and night sweat frequency in breast cancer patients with treatment-related symptoms."
http://www.medicinenet.com/script/main/art.asp?articlekey=1644360 -
Thanks for the link re gene and tamox. Sister, daughter and me testing -ve so far on BRCA 1 & 2 and BART after our bc.
I take tamoxifen 3-4 pm. with a snack. This seems to work for me - I'm usually home at this time - few hot flashes, no leg pains, so far. Have only taken 35 of the 1825 (5 yr) prescribed! But I'm 63 & way, way post meno. Taking supplement of Olive Leaf 1x day to address discharge - working for me.
re weights Glad to hear the idea of start low & go up slow. I Crossfit & just now getting back to heavier (for me) loads. Over 4 months a gradual process. Now eg. 115# back squat, 45#OHS. I do regular scaled WODs but use a compression sleeve & gauntlet for LE prevention. I was measured & fitted out - insurance covered sleeves 100% for LE prevention. Also do Pilates & Yoga now to focus on spinal health. Taking vit d repletion course since testing 'low' & that's not good since testing osteopenic in hip/femur/lumbar. Taking calcium/K2/strontium/D3 2,000iu. But i can't go vegetarian...not with a yummy piece of salmon waiting for the grill this evening. lol
cheers
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Sue!
Great minds....I made Alaskan Salmon for supper tonight too
On the George Foreman though...it's freakin' COLD here! lol(Plus my Salmon always seems to break apart on the grill...do you use a special grate?)
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tonlee - If the salmon has skin you can grill the skin side with a lid on it so it kind of smoke/steams the top - so don't flip it. Or, you can put a piece of foil down and poke a few holes in it, put some olive oil or vinaigrette dressing on both sides and put it on the foil - if you do it that way you do flip it half way through cooking.
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Tonlee, How do you season the salmon on the George Foreman? And what heat setting do you use? I have the grill but haven't perfected my technique!
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cooking class cont'd ha ha
SpecialK has done this before... good advice. We grill in natural gas Q outside, TonLee.
Put skin side down on a rack. (We use a hamburger rack) Tonight, DH topped with smidge of leftover salsa and seasalt. Very tasty. We also like a drizzle of maple syrup and rosemary.
...everything went 'healthy' until I served the pie...
cheers
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We have salmon almost every Sunday night. We used to use a Forman grill but switched to cuisinart Cuisinart GR-4N 5-in-1 Griddler. It works much better. The food doesn't seem like its steamed and you can get real grill marks. There's a temperature control, flip the grills for a flat side and use this completely open.
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Lago, glad to hear the good review on the cuisinart. I just got one for Christmas and have grilled chicken, steak and veggie burgers on it so far. Would love to hear how you do salmon on it and if you have any tips about grilling chicken. I didn't marinate it or anything first and it was bland. It did have nice grill marks though!
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Hi Jennt28,
I showed the exact same article to both my radiologist and MO within the past week. My MO said that because I tested 100% for being ER+/PR+ and Her2+, I would benefit from taking Tamoxifen regardless how weakly I might metabolize it. He said, given my diagnosis, I will benefit from taking Tamoxifen. The chemo regimen sent me into menopause, so he told me that if I am able to take Tamoxifen for 2 years, he will then do blood work to test my estrogen level, FSH and LH levels to ensure I am in full menopause. This will mean I will switch to an AI for the next three years. I live in Toronto Canada and am being cared for at Princess Margaret Hospital, supposedly one of the best facilities in the world to treat cancer. I am supposed to begin taking Tamoxifen when I finish my radiation sessions (21 of them). I began on Christmas Eve and will finish on Jan., 24. The
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Dear runner1987,
It is very scary to receive a BC diagnosis, but let me and all the gals in this forum assure you that between the medical expertise of your surgeons and oncologists plus gaining knowledge from all of us here who have been diagnosed and are still going through treatment or have been away from treatment for years that you can beat BC, you will overcome it, and you must, must, must maintain a positive outlook. I am 100% ER+/PR+ and HER2. I had a lumpectomy in May 2012, followed by six sessions of chemo, the last three with Taxotere and Herceptin (knocks out the HER2 protein molecule which causes cancer cells to replicate quickly). I began radiation on Dec., 24 and will finish on Jan., 24. Then I will take Tamoxifen for at least 2 years and will be switched over to an AI, something you will not do as you are too young. You will be taking an estrogen suppressor, however, and that is what Tamoxifen is. Let your family and friends support you. A great website that I check daily is www.sciencedaily.com>. Under the health and medicine banner, click "breast cancer," and the most current submissions to science journals from around the world are contained there. Hang in there.
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Hi Eileenohio,
I, too, am 100% ER+/PR+ and HER2+. This gives us a grade of 3/3, which no one wants, but my MO said it is much better to be highly hormonally receptive because there are estrogen suppressing drugs such as Tamoxifen that work well for us gals. Herceptin is a drug that knocks out, hopefully, the HER2 protein molecule which causes cancer cells to grow and divide quickly.
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gratitude - Tamoxifen is actually an estrogen blocker, rather than a supressor. The reason Tamoxifen is given to pre-menopausal women is so that the drug can block the estrogen receptors on the cells, but still provide estrogen beneficially to maintain bone and heart health. Aromatase inhibitors are supression drugs that stop estrogen from being produced (actually blocks the enzyme aromatase which converts androgens into estrogen) in other parts of the body under the assumption that our ovaries are no longer producing it.
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Gratitude, that’s very interesting info, I’m in the same situation – highly er/pr+, chemo pushed me into menopause, will be starting tamox soon, finishing rads 1/23.
TonLee, thanks for the link. It looks like more info is forthcoming shortly. I’ll ask MO about it when I have my post-starting-tamox appointment.
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How highly estrogen positive your cancer was has no proven correlation with how well you genetically metabolise Tamoxifen into Endoxifen. In fact, if someone's cancer was highly estrogen positive and they weren't metabolising Tamoxifen into Endoxifen they would be, I would assume, in quite high danger or recurrance of the cancer.
This research, according to the Mayo Centre press releases over the past couple of weeks, is showing that If your body chemistry does not process Tamoxifen efficiently you would be better off having your ovary function suppressed (if pre-menopausal and take an AI instead of Tamoxifen.
I have the order for the blood test. Figure if it comes back as I am a good metaboliser then all is well. If it comes back poor then I'll ask my MO to move me to an AI. If it comes back intermediate I'll stay on Tamoxifen and ask for a repeat blood test in 6 months to do a double-check on the initial result.
Jenn0 -
Ladies and guys (if there are any) of the Triple Positive Group -
What's your take on Fage 0% Greek yogurt during chemo?
It is pasteurized...
It's such a good source of protein that I would hate to give it up.
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LeeA, I'm sure TonLee will chime in in the morning, but I'm pretty sure she lived on the stuff during chemo. I don't see why it would be a problem if you're not having problems digesting it.
Jennt, that sounds like a good plan. I think I'll do the same. When did you start tamox? What should I be expecting/bracing myself for? I'm oddly looking forward to it, in a way, because I guess it's a sign that the worst part of the treatment will be over, presumably.0 -
Started Tamox in August. Took a four week break at the end of September for my surgery and then started again mid-October. Had a day both times, about 2 weeks in, where I felt nauseous and yicky. Starting the second time I got a headache that lasted 2 weeks and that concerned my MO enough to order me a brain CT. Nothing but brain in there so she then agreed with my theory that it was the Tamox.
Apart from that I am sure it is contributing to my insomnia and struggle with weight. But, my cancer was almost 100% ER positive so I know that this (or an AI) could be the most important part of the strategy for keeping the cancer gone!
Jenn0 -
LeeA I think Tonlee mixed Fage with PB (powdered peanut butter). She'll be by soon with her recipe.
Jennt28 a friend of mine can't take tamox so she is doing luprin shots and Anastrozole. There are several options to get you on an AL if you can't do tamox.
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LeeA - Why would the greek yogurt be questionable? Did I miss something in the "what not to ...." list?
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Thanks, lago.
powermom, there's a discussion on one of the chemo threads. It must be the January thread because you probably would have seen it if it was on the December thread (I follow both).
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Jennt28: just wanted to say you have great hair!!
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