TRIPLE POSITIVE GROUP
Comments
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Right Omaz! That's happened to me too
Anything that is in chip form...I love pita chips...anyway, they will say 8 crisps or 1.1 ounces (whatever) are 140 calories... Except 8 crisps never really seem to be 1.1 ounce, either way below or above...obviously the crisps AT THE FACTORY are undamaged....lolKay, personally I don't do any stretching BEFORE cardio workout (and the research now supports this). I usually get my blood pumping by doing something (like dancing, jogging in place) for the duration of one song (about 3 minutes) before lifting weights, but that's just to get my muscles and mind ready for the work ahead. Walking in place would work too
Also, your LE specialist likely doesn't subscribe to professional fitness/sports nutrition organizations which is where the bulk of the study material comes out.. And even then they have to search other professional medical literature.. for instance this particular study was done on diabetics..not in the world of sports nutrition..however, the results were significant enough on the weight loss/burning calories portion, it was picked up by the fitness professionals (does that make sense?)....while I pay to get most of my stuff via snail mail, I imagine if you googled it, it would likely be available on line for free somewhere. Usually takes about 6 months for it to show up on-line for free....give or take. Maybe take it to your specialist and see how it meshes with LE research.
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Herceptin question!! For the past couple monthts I have had herceptin related fingernail issues. I just accept this as a Herceptin SE,in the past few days the tips of some of my fingers especially my thumbs have had little cuts at the tip ( like paper cuts) man they really hurt..Is this a SE of Herceptin? I have been using Gold Bond Medicated Cream that seems to help a little.
Thanks Eileen
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Eileen - I am having fingernail issues as well. I always had beautiful nails pre-BC. Now they are ridged and break very easily. They aren't really thin but seem fragile, and I've had alot of hangnails. I attributed it to leftovers from chemo but maybe it is the Herceptin!
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Eileen - If I understand what you are describing correctly I get these every winter and so does my husband. I put antibiotic ointment and a bandaid on them, especially at night. For me they take about 5 days to heal up. My husband and I think it is a combo of getting hands wet in the kitchen and the cold weather that brings them on for us.
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Eileen, I have the same issues. I'm doing taxol and herceptin together now, so I thought it was the taxol. I have lots of little cuts on my fingers, and the skin is peeling off of my finger pads and feet. Strange side effect!
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kayb - Never heard the superglue idea - I am going to give it a try - or have my husband try it first!
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Excellent posts on exercise, TonLee. I've bookmarked this page.
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Re: those little cuts - my mother-in-law gets them every winter and she also uses Superglue. At one time I thought they mentioned Raynaud's but then I think that changed (I'll have to ask my husband). My husband also got them during his illness (dermatomyositis - whish is an autoimmune disease). The one thing that helped him immensely has already been mentioned: Gold Bond Ultimate Healing with Aloe.
Considering Herceptin is a monoclonal antibody I wonder if these little cuts are immune system related? I have no idea. Just connecting dots in my addled brain without consulting Dr. Google.
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I have been getting those little skin splits too - right next to the edge of the fingernail (on the sides). I figured it was from washing my hands so much during chemo, combined with the drying effects of taxol, but it has continued now that I'm doing Herceptin only. I do the "Neosporin and bandaid" method which seems to work in a couple days. I have two bandaids right now, in fact. Very annoying, and makes typing difficult! Maybe I'll get some of the Gold Bond Ultimate Healing stuff - I'm a little afraid of the superglue.
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I started putting on a thick layer of Aquaphor on both hands and feet and sleeping in cotton gloves and socks - this worked well for the little cuts. Mine were more like splits or cracks right where the fingertip meets the end of the fingernail.
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TonLee, I haven’t ever had a scan. That’s what my oncologist keeps saying to me (i.e., it would be extremely rare for me to have bone mets right after chemo), but somehow it was only after my last appointment with him on Monday that I thought about the fact that I could have had bone mets all along. (Of course, I could also NOT have it at all, which I fervently hope!!!) The areas that concern me aren’t that close to the area that is being radiated now. One concerning symptom is the numbness/tingling in my arms when I’m sleeping. That could suggest bone mets around my neck area. It could also be backlash symptoms from the injuries from a car accident I was in in 12/2008, along with degenerative disc disease (which I know I have). I got a cortisone shot there in 5/2011. They did MRIs in that area … seems like if there was anything funky it would have shown up? Not that the situation couldn’t have changed but … I am making myself a bit of a nervous wreck over this. Not good.
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Re: typing with those little cuts - my husband is a tech guy and that was what made it hard for him - constant keyboard work (of course, we don't have to have constant keyboard contact). Anyway, he swears by the Gold Bond Ultimate Healing and says it's the only way his fingers healed enough to be able to type without an inordinate amount of pain.
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cypher, your body has been through so much in the last several months. My chiropractor said I have degenerative disk problems in my neck as well (this was in 2011). Not only has your body been through so much but it's still going through so much; i.e. Herceptin infusions and radiation. Since being diagnosed with breast cancer I've gotten some really strange sensations in my arms that I never had before. It always happens at night and it often actually transcends tingly/sore and goes into the category of "extremely painful." I'm trying to think if it started before or after that loading dose of Herceptin. I wish I had kept a journal but didn't start doing that until chemo started.
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Leea - I found some fragrance free gold bond so I'll try that.
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LeeA, that’s really helpful to know, thanks. I know you just had a scan and you came out in the clear so that is encouraging to me. I have to realize that my mind LIKES to find patterns. I’m really good at coming up with big overarching theories. That is not to say that my theories are correct….. So a “bone mets” theory that puts all the data together is where my mind tends to go, rather than a bunch of random stuff that doesn’t add up to anything, which is at least as likely as the horrible theory.
I did have them check for estrogen etc. levels and from what I can tell I am now post menopausal, or chemopausal. Perhaps someone can correct me if I’m wrong but I think these test results mean I am menopausal? If I am understanding them correctly, this is good news in 2 ways – 1) I am post menopausal, which is good news in the same way that we all congratulated Jenn that she “only” had arthritis all over her body at the age of 47, and 2) I was very sure that my periods had resumed, well as much as they can without a uterus, but this suggests that I was mistaken. Hopefully I am mistaken about the, you know, as well….
FSH (follicle stimulating hormone) – 91.2
Estradiol - <12 pg/ml
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Thanks everyone. I going out to buy some super glue. I will try it. As crazy as it sounds I have heard that they use super glue for head wounds and even brain surgery. UPS just delivered my Garlic Shampoo & Conditioner so as you see I will try anything-- nothing ventured nothing gained..Wow- these little cuts hurt, hope super glue helps.
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I had them too, but I thought they were from the taxotere, it took about half through herceptin only, for them to heal. And they did heal before the end of herceptin.
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I kept my nails iced and shellacked all the way through taxol and herceptin. Nails were great through taxol and then about halfway through the dose dense herceptin, they started to break way down, and lift on the edges. Got thin. Had to give up the shellac and manicures as the nails were too tender and sensitive to take anything. I couldnt begin to use them for anything as they were like baby fingernails. I am 9 months out from herceptin.
They are better...stronger, but break easily and don't grow really long like before yet. Still have some ridges. Big toes are the same way, but looking much better. I don't know which of those things it was, but I do not waste money on manicures now as they don't last. I tried a shellac when we went to Thailand. They did ok, but it was still hard on them when I removed it with the acetone. My manicurist always laughingly told me treat them like jewels, not tools. I finally took her up on it out of necessity.0 -
Ah Cypher, I see why you're worried. Get a scan woman!
I use super glue on my fingers when I am playing guitar, if I've been away from it for awhile. It keeps my fingers from getting really sore but lets the calluses build...
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Uh oh, becuase it sounds like something or because ... you never know? MO says he'll order a scan when I'm done with rads b/c he doesn't want me to have all that radiation at once, which makes sense to me. In the meantime .... that's a long time to be obsessively freaking out with no answers. Theoretically I should be somewhat reassured by the fact htat MO doesn't think it's anything but that doesn't seem to be working.
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TonLee, thanks for the post about exercise. It's definitely NOT too much information; we're lucky to have someone with so much knowledge.
Cypher, one thought about the numbness that may or may not apply to you: I have chronic problems with my neck and upper back (a combination of thoracic outlet syndrom and degeneration), which used to cause lots of numbness in my hand (one or the other, but not both) while I slept. After a bunch of PT, that stopped happening, but since my surgery, it's started again. My PT thinks -- and I agree -- that it's because my surgery has caused me to move less in my sleep, which means nerves that get pinched stay pinched for longer, cutting off the feeling.
I wonder if you're sleeping differently because of some part of your treatment. If you sleep on your sides or stomach, a change in how much you move can cause all sorts of oddities in your hands...
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Bryona, that could absolutely be part of it. I can come up with alternative explanations for everything, and MO isn't worried about it. But ... but but but .... I need to do something about my anxiety because it will be several weeks before I can find anything out.
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I had my first post-chemo follow-up (one week). The nurse said my WBC was low but my MO said my counts were fine - meaning, for the moment, he's comfortable with the numbers - or that's how I took it. They test it all on the spot.
I thought the nurse said 1.9 (for the WBC).
Today feels like a turning the corner day. I've been on the phone with Relda and she says that her turning the corner day was usually day 10. If I count the first day of chemo as the infusion day this is day eight. Around 1:00 I started to feel more like myself - even music sounded good (yeah, that sounds weird but I was really enjoying music today).
After I left the MO's office I went on several errands and even had a McDonald's hamburger - something I haven't had for three or four years. So far, so good - none of that deep gastrointestinal pain after eating it so I'm crossing my fingers.
Eileen, I hope that garlic shampoo works out. I have no idea if there's any validity to it (I still have the browser tab open from looking it up a few days ago - I didn't get too far with it).
cypher, I, too, am a big dot connector and creator of, as you put it, overarching theories. I've tried my hardest not to let that bleed into the breast cancer stuff because I know the more I google the more miserable I'll get so for once, I'm trying to stay comfortably (numb) dumb (when it comes to knowing too much about my reports, biopsy results, test numbers, etc.). I just know that my mind can take me to such dark places that it can't possibly be healthy for my recovery. The scanxiety alone nearly drove me nuts but had I turned to Dr. Google - well, I might have gone completely over the edge. Everyone knows their limit when it comes to what they can and cannot research without going stark raving mad. I know I'm much happier looking up things about galactic rotation and the heliosphere than I am knowing what some of those scary looking terms from my biopsy report really mean. I hope you can try to relax about it but believe me, I know it's hard. ((cross-town hugs))
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Tonlee,
I appreciate your spot-on posts about fitness. They are helping me to remember what I know I need to do to get myself more healthy, even in the midst of chemo. Thanks for sharing your knowledge! Wish you could be my personal trainer!
I get those little cuts on my fingers, too. I think I saw some kind of "skin glue" at the drug store, might give it a try. I just don't know if I can bring myself to use superglue!
Cypher, wishing the best for you.0 -
My ref doc told me it is super glue they use for stitches. Just a different brand name. It could even be the same manufacturer! so don't sweat it. Much love.
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Cypher I feel so bad for u'r anxiety over this---but we do have our limits of what info is given to us. Some can handle it all and want to know everything, but since I feel like I'm the original Munchhausen (not by proxy) that the less I know the better, but I do understand how u feel- If u'r MO had an inkling of anything else being wrong u'd be tested immediately--for some reason he/she doesn't so that's a good thing. And tingling and hurting seems like it all goes with treatments for most of us. Pains we never even had and if we have had them they're magnified by far. I think all this treatment brings a lot out on our bodies and our minds--it just puts us in a different place. Do u take anything for anxiety? If not just ask for something, if so just take it and rest u'r mind from overthinking. All of us take everything differently bodywise and mentally but the boat is filled with us--so u have a lot of support and caring and u'r Dr. sounds like a good one or u wouldn't hace started with him/her. Soon u'll have the test and know for sure, but worrying isn't going to change a thing and more often it's not mets so try to look at that glass as 1/2 full--make it vodka then when this is over throw some ice in it and drink it. Again I truly feel bad that u feel bad.
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Cami, LeeA, everyone else, thanks for your words of wisdom. You're right, I'm driving myself batty. I had already decided I was going to call my psychiatrist (I see her for sleep meds) and make an appointment b/c I'm driving myself crazy. (Am also driving MO crazy, I'm sure.) I'm also going to make an appointment with my energy healer lady. I don't know if it does anything or not but I think it will calm me down.
I'm trying to work on other linkages, if my brain has to think about it at all. Like, to what degree did my increased perception of weird aches/pains/tingling sensations correlate with my not swimming as much b/c of the radiation schedule? Did I notice it more after I overdid it with the yard work? Am also trying to limit it to certian time frames -- ok, for the next 20 minutes can drive myself crazy, then I need to stop thinking about it for 3 hours, whatever, like that.
LeeA, how has chemo been so far for you? It sounds like it's been ok, as far as it goes. It's good news about your WBC -- mine never dropped so low that I needed the neulesta shot - they test you mid way to see. Mine dropped, but not so far that they wouldn't recover on their own by the time of the next tx. I've heard that exercise helps with that as well, so if you can keep up the walking thing and avoid that awful shot, that would be a good thing.
Bryona, why would a lumpectomy make you sleep differently, do you think? Or move around less?
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Ok. So from my MO appt today:
1. SHE's happy to organise having my port out immediately after my last herceptin on 15 February. She said once she orders it they usually book you in within two weeks for the day procedure.
2. I asked about the CYP2D6 blood test that tells you if you are a good or bad metaboliser of Tamoxifen. MO said she "doesn't believe it" and yet again told me she is "conservative". I argued the point that "I" am not conservative and am concerned that I am not metabolising this stuff since there is a theory that women who don't metabolise it well don't get hot flushes - and I've never had one yet! So she said she would order the test if I researched and found out how to get it in Australia.
Easy peasy!
Checked online and found the pathology company that do the test in Aus. It costs $100 not covered by Medicare and the are multiple collection centres around the country. So I've emailed the details to my nurse and hopefully I can pick up the form tomorrow when I'm there and then get the blood test next week. If it shows that my body doesn't metabolise Tamoxifen well then I'll have to consider using for Lupron to shut down my ovaries and then take an AI.
Seems silly to keep taking Tamoxifen if it is only "maybe" working and a new research paper out of Mayo in the US really indicates that testing should be done. I'll copy it here for you guys.
Ability to Metabolize Tamoxifen Affects Breast Cancer Outcomes, Mayo Clinic-Led Study Confirms
26 December 2012 Mayo Clinic
For nearly a decade, breast cancer researchers studying the hormone therapy tamoxifen have been divided as to whether genetic differences in a liver enzyme affect the drug’s effectiveness and the likelihood breast cancer will recur. A new study by researchers from the Mayo Clinic Cancer Center (mayoresearch.mayo.edu/mayo/res...) and the Austrian Breast and Colorectal Cancer Study Group (www.breastinternationalgroup.o...) provides evidence that genetic differences in the enzyme CYP2D6 play a key role in how well tamoxifen works.
“Our findings confirm that, in early breast cancer treated with tamoxifen, genetic alterations in CYP2D6 lead to a higher likelihood of recurrence and death,” says Mayo Clinic (www.mayoclinic.org/) oncologist Matthew Goetz, M.D.,(mayoresearch.mayo.edu/mayo/res...) lead author of the study in the journal Clinical Cancer Research.
In the clinical trial, Dr. Goetz and his colleagues studied the rates of cancer recurrence and death in two groups: postmenopausal women with primary estrogen receptor-positive breast cancer who received tamoxifen for five years and those who received tamoxifen for two years followed by the aromatase inhibitor anastrozole for three years. Anastrozole is a breast cancer drug whose metabolism does not require the CYP2D6 enzyme.
The study showed that women who were born with genetic alterations of CYP2D6 that abolish the enzyme’s critical metabolizing activity and who took tamoxifen for five years had recurrence of breast cancer, or died at a rate 2.5 times higher than women with normal CYP2D6 enzyme activity. Women with intermediate levels of the CYP2D6 enzyme had rates of recurrence or death 1.7 times higher than women with normal CYP2D6 activity. Importantly, Dr. Goetz notes, that genetic alterations in CYP2D6 did not affect the likelihood of recurrence or death in women who switched to anastrozole after two years of tamoxifen.
“Switching from tamoxifen to an aromatase inhibitor may be one reason for the discrepant studies surrounding CYP2D6 and tamoxifen -- as information about whether a patient took an aromatase inhibitor after tamoxifen was not available in most of the prior studies,” says senior author James Ingle, M.D., of Mayo Clinic, an expert on hormone therapies for breast cancer.
A blood test can determine whether a woman has alterations in CYP2D6 and predict how efficiently her body will convert tamoxifen to endoxifen. Approximately 5 to 7 percent of European and North American populations are considered poor metabolizers of tamoxifen.
“The results of this successful high-level international research collaboration are an important step forward in our quest to individualize breast cancer treatment and provide tailored care to women with breast cancer,” says Michael Gnant, M.D., professor of surgery at the Medical University of Vienna and president of the Austrian study group.
So what should a woman do if she is unable to effectively metabolize tamoxifen into its most active form? Dr. Goetz believes that the current recommendation of switching from tamoxifen to an aromatase inhibitor is likely to result in the greatest benefit in women with decreased CYP2D6 metabolism. For CYP2D6 poor metabolizers, avoiding tamoxifen altogether and starting out with an aromatase inhibitor may be the best approach, he says.
Dr. Goetz’s group is working with the National Cancer Institute to develop endoxifen as an alternative to tamoxifen. If women can be given endoxifen, the active part of tamoxifen, it won’t matter how tamoxifen gets metabolized, he says.
The study is partially funded by the National Institutes of Health, co-authors include Vera Suman, Ph.D.; Tanya Hoskin; Mary Kuffel; Stephanie Safgren; Carol Reynolds, M.D.; Matthew Ames, Ph.D.; and Richard Weinshilboum, M.D., all of Mayo Clinic; Martin Filipits, Ph.D.; Raimund Jakesz and Margaretha Rudas of the Medical University of Vienna; Richard Greil and Otto Dietze of Paracelsus Medical University, Salzburg, Austria; and Alois Lange and Felix Offner of Medical Hospital Feldkirch, Austria.
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Jenn, congrats on getting your port out!!! That is so exciting.
I also asked my MO about the test to see if I am metabolizing tamoxifen and he said he did not believe it is accurate and that as long as I am having hot flashes it is working. Hmmmm...I have some hot flashes...but fewer than before. I am also considering ordering the test as you can here easily.
Cypher-I feel your pain on the whole scan thing. I got a clear from the radiologists but will still need another pet in three months to rule out mets due to small activity in lower back. I wish it was more black and white than it is...
Bryona had some great points about scans also.
SpeacialK- when you said you back lit up in your pet but you knew what it was...did your MO offer to rescan you? Were they able to tell you exactly what ot was from the scan? or did you just know? my MO says he has no idea what it is on my lower back.
I am trying to figure out how to relax and stop worrying about this next scan in April.0 -
Hi ladies, I'm new here - diagnosed on 12/26/12, having bilateral mastectomy with tissue expanders on 1/11. (Eek!) I'm triple positive, >90%ER+, 80%PR+ and a HUGGGGEEEEE FISH ratio (14 - WTF?) so highly highly HER2 amplified. However my Ki-67 was only 5%! I'm totally baffled by all these numbers.
I'm 25 years old so all of this is incredibly frightening to me. My tumor is only 1.4 centimeters. Because I am really young it went misdiagnosed for a few months before it was finally identified as IDC. As far as I can tell, it didn't grow at all in that time. Seems weird that I would be soooooo HER2+++ and have a tumor so small, right? I don't know what to think. Mostly I'm just scared.
No one else in my family has ever had cancer, including my grandparents, aunts, uncles, cousins. No one but me! So I'm the first one to go through all of this. I'm happy to have the support of this board.
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LeeA my white counts were down a bit for several months after chemo (and still on Herceptin.) My PCP said that is to be expected. Granted 3 months PFC I got shingles, 7 months a really bad cold, 9 months another cold. Then I was fine for over a year till this damn cold that I've had for 3+ weeks now (almost gone but it's slow to move out). I think after chemo, with no nuelasta I managed to catch stuff. If I get a cold I never get it more than once a year. Did get the flu shot again.
Moomflwr I think my my port surgeon uses super glue. When it was put in I think the resident glued me up. Tons of glue. Not so much when it was removed
Cypher when something is wrong I always try to google to search for some benign reason. Did that initially when my nipple secreted blood. Granted I know I wasn't breast feeding and the location didn't indicate papiloma so I pretty much new I had breast cancer even before my mammo/US. But most of the time it works. BTW the powerwalking helps with my stress level. Strength training too but not as much as the powerwalk through the park.
Jen my SE from Anastrozole are not as bad as there were a year ago but I still get some stiffness and the occasional light flash. I'm assuming it's still working too. I think your body gets used to stuff over time.
runner I'm a weirdo too. I have this big tumor (6.5cm) and HER2+ with no nodes. Also my HER2 score was 15… practical tied with you. I'm so glad they caught yours when it was small. Yes it can happen with HER2+.
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Runner,
Welcome. Sorry you have to be here, but lots of good information on this thread about what to expect from chemo, rads, and adjuvant (hormonals).
Cypher,
I'm sorry I wasn't clear. I do understand why you are concerned. Bone pain is hard to brush off, I know first hand. I don't know if it is BC, but I am hoping statistically speaking that you are normal! (Meaning, it isn't.) If waiting is going to drive you mad, tell your Onc you don't want to wait. Ask if there is any proof/evidence that a PET scan during rads is not good/too much..or better yet, ask the RO, they are trained in how much radiation is acceptable, and how much is not. Furthermore, they are likely trained in exactly what it means (radiation numbers wise for exposure) for a woman who is having rads and PET scan.
All that to say, I wouldn't take my Oncs word for it. I'd ask the professional radiation person!
Jenn,
I'm thinking about asking my Onc to switch me back to Femara, even though it just about did me in last time. Especially since this info came out....
http://www.breastcancer.org/research-news/20121217-5
The way I read this: more research needs to be done on us Lum. B gals, but what that means to me is this:
1. There is a chance Tamox is not working well for me.
2. Femara is proven to work on post-meno women.
So, as much as I hate it, I think I'm going to try it again. (Because I'm pretty sure Tamox never worked for me anyway, which is why I had an Ooph.)
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