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Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Dec 8, 2007 06:39 pm
MOVING TO PRIME TIME: CYP2D6 Testing and TamoxifenI first heard of this test via the Lovin Life post. She doesn't check in here often (nor do I) and I can't find my way around this new format so I don't know how to find her posts. Search doesn't work for me. But I told my onc about this test and he said he never heard of it. I simply said 'well find out and call me.' You can't let these doctors get by with a 'I don't know about it.' Make them work for their money! Well he found out - I had the test - and I am an intermediate metabolizer which means I could have a toxic build up with the usual 20 mg dose and the dose has to be adjusted. That hasn't happened yet. I am still waiting. If you are a high metabolizer or poor you will reap no benefits from tamoxifen. I guess I am the first to start the ball rolling in my city. I would like to thank Lovin Life but I am confused on this new format and can't find her posts or figured out how to PM her. So thanks Lovin Life if you read this!!! |
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Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Dec 8, 2007 06:31 pm
Bottle 'o TamoxifenHave you ladies had the CYP2D6 test? It shows how well you metabolize tamoxifen. A poor metabolizer receives no benefit, can suffer toxic build up - intermediate needs a dose adnjustment or suffer toxic side effects - then a high metabolizer receives no benefits either. It's a blood test. Simple - runs around $600 if your insurance won't pay for it. |
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Not Diagnosed but Concerned + High Risk Women, Created: Dec 8, 2007 06:15 pm
I'm considered high risk because I'm not hormone receptiveFrom what you posted snowyday, your cancer is considered aggressive due to its 'grade' -- you said 'aggressive grade'. That means most likely grade 3. Grade 1 tumor looks a lot like normal cells Grade 2 in between Grade 3 doesn't look anything like normal cells It's not necessarily the triple negative that makes it aggressive. And as others have said, the triple negative patients respond much better to chemo. And much of the gloom and doom associated with triple negative is the fact that there is no follow up treatment like Tamoxifen or Arimidex for estrogen positive tumors. But many women refuse to take those follow up pills. You should get a second opinion on your tumor slides from an agency outside the one that did your original pathology. I have seen many posts on bc boards whereas the triple negative was wrong on first pathology report. And get a second opinion for your liver tumors. They have drugs that I have read made the tumors disappear from the liver! And if you are eating more fiber you have to increase your water or liquid intake -- if you don't you'll end up with something similar to cement in your intestines. Best wishes to you. |
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Not Diagnosed but Concerned + High Risk Women, Created: Dec 8, 2007 06:00 pm
I can't.....stop smoking........There is an older drug called 'buspar' that they accidentally discovered helped people quit smoking -- lost their fixation for a nicotine fix. It is/was used as an 'anti anxiety' med but they noticed people lost their nicotine addiction when on it. So 'buspar' as an older drug might be cheaper then the new 'chantix' . Newer drugs cost more$$$. (I have a friend who used buspar due to a fear of flying - in early 90's - and discovered she had no nicotine desire when using it. She took it two weeks before and during her flight then used Xanax during the day of flight. She kicked her cigarette habit with buspar.) Cigarette companies use the cigarette as a 'delivery system' for a nicotine fix. It isn't any different then a heroine or cocaine addiction/fix. Just a different legal delivery system for an addictive substance. They also put gunpowder in the tobacco so the cigarette will burn faster - thus you smoke more - thus you buy more. That's why your cigarette burns up so fast just sitting in the ashtray. They also use on the tobacco plants hundreds of pesticides and insecticides that are banned in the United States with an exception for tobacco growers. (big dollar lobbyist at work) You have to want to quit. Nothing will work unless you really want to quit smoking. Lung cancer from smoking accounts for about 90% of lung cancer deaths. It is the no. 1 cancer killer of both men and women. Survival of breast cancer is higher then the survival of lung cancer. It takes ten years for your lungs to return to the status of a nonsmoker. But the risk of lung cancer will always be there if you were a smoker. The risk never goes away -- just reduced considerably after you quit and get past that ten year mark. You can't smoke while wearing a nicotine patch -- that can give you a heart attack. I had a friend who had to remove the patch just before he went to bed cause it gave him bad dreams and disrupted his sleep. I have another friend who used the nicotine gum (about 10 yrs ago). She chewed it for a year! Then she had to withdraw from the gum but she said it was easier then withdrawal from cigarettes. For mastectomy patients that want reconstruction, most surgeons, if not all, will not do the surgery if you are a smoker. It interferes with healing and blood vessel growth. |
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Not Diagnosed but Concerned + Not Diagnosed but Worried, Created: Dec 8, 2007 04:58 pm
OK, so how bad do mammograms really hurt?The size of breasts has nothing to do with pain during a mammo. When I suffered from fluid filled cysts the mammo's were extremely painful. When I finally had years without the cysts, no pain. Do you have the new "digital" mammo in your city? Those are super quick -- less time being squashed - much less time!! The Digital mammo is so fast - takes a picture that you can see pop up on the monitor. And that picture can be reproduced or enhanced or zoomed in on millions of times without distorting the original picture. I had one and they took two super fast shots and it was over. I would say it was about 1/4 the time I used to spend getting a mammo. Try to find a Digital mammo. |
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Not Diagnosed but Concerned + Not Diagnosed but Worried, Created: Dec 8, 2007 04:46 pm
Warning about our privacyEveryone has to remember -- there is no such thing as 'private' or 'privacy' on the internet. |
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Not Diagnosed but Concerned + Not Diagnosed but Worried, Created: Dec 8, 2007 04:24 pm
Found a lumpSince you have such a terror of needles then you should have an 'excisional biopsy' if a biopys is ordered. That requires one poke of a very fine needle to adminster an anesthetic and the entire lump will be removed. A 'needle biopsy' requires lots of needle pokes. So its one poke vs many IF a biopsy is ordered. You will most likely get an ultra sound and that will show if it is a fluid filled cyst or something suspicious. If its a fluid filled cyst they can drain it on the spot with a needle that is so fine you won't even feel it. Have you had a mammo? Many places offer free mammo's. Look into that in your city. Ask Planned Parenthood. American Cancer Society offers free mammo's. Have one in your town? Try to remain calm - I know, its easier said then done. And you do have your age on your side that its most likely not breast cancer. Wish you well and most of all wish you are benign. We don't want you to join our club!! |
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Not Diagnosed but Concerned + Not Diagnosed but Worried, Created: Dec 8, 2007 04:12 pm
Hard mass after clear mamo and now far from homeLitDoc I have always understood that cancer tumors are stuck like glue to the site and won't move at all. You say your lump is very mobile. I would say that is a good sign it is not cancer. Fluid filled cysts can enlarge quickly and are rock hard. They are more often then not mobile. Regardless, get it checked out as soon as possible. Good Luck to you! |
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Recovery, Renewal, & Hope + Moving Beyond Cancer, Created: Sep 2, 2007 03:22 pm
I'm not going to let PINK get to me this year!Pink was always my favorite color - and fuschia. Still is!
I loved the 'if you were my sister' ads. I think they really impacted on how serious bc is. Were they there before my bc dx and I didn't even hear them? I know I watched each one that aired my first year of dx and cried the whole time. I found them to be very real about bc and the women they chose were perfect for the ad. Of course there are those companies who are just trying to make a buck off the bc pink thing. But much of it does go to various groups who are doing something about bc. I like it -- I am one of those who believes that everyone needs to be aware of bc - its a dangerous disease and it has no cure. I don't want bc thought of as equal to the common cold, which I discovered upon my dx, that many people thought. Just cut it out and go home. I think we can recognize the pink rip offs from the legit ones. I have many friends and relatives in the annual cancer run in honor of me. They wear pink and I feel honored that they are doing this in my behalf. I love pink -- wear it a lot -- love it as a symbol of this terrible disease that kills a woman every 13 minutes. People need to be made aware of that. PS - Barbara Walters on Thursday (rerun) stated that breast cancer is now curable! (she was announcing Robin so n so's bc dx) I had planned to send an email to her but forgot -- think I'll log off and do that right now. |
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Tests, Treatments & Side Effects + Surgery - Before, During, and After, Created: Sep 2, 2007 03:05 pm
Are Crying Jags the Norm?Oh Yeah! Lots of crying jags!!!!!
Started to let up about 9 months after dx. Stopped after a year after dx. |
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Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Sep 2, 2007 02:32 pm
ER+ PR- Her2- SupportWhat percent is your er+ - very low - very high?
Have you had the oncotype test? That shows your risk of recurrence as well as need for chemo and tamoxifen. There is also a test - CYP2D6 - blood test - that shows if you will metabolize tamoxifen. About 7 - 10% women can't metabolize tamoxifen. Start with the Oncotype test. |
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Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Sep 2, 2007 02:16 pm
too much estrogen and not enough progesterine???Once dx with bc - it would be dangerous to play doctor with your hormones!
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Tests, Treatments & Side Effects + Hormonal Therapy - Before, During and After, Created: Sep 2, 2007 02:02 pm
Drying UpI have had dry skin my whole life! It means we with dry skin have to work harder to keep our skin close to a normal condition.
Like lather on body lotion from head to toe after each shower (and before bed). Hand lotion every time your hands come out of water. Gloves for garden work. Exfoliators. Cuticle creams nightly for fingers and toes. And I discovered using a "microplane" for the bottoms of feet -- heels especially -- on dry feet -- gets rid of all that excess dead skin. So, it's a lot more work for dry skin ladies! I too used 'crack' - great cream. Does have a very spicy scent. But there are other great creams for feet as well. I prefer those with no scent. The oil glands in my eye rims are not working so I have a horrid dry eye problem. I use an ointment at bedtime so my eye lid doesn't stick to my eyeball. We just have to work harder at staying soft and supple!! |
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Recovery, Renewal, & Hope + Biographies of Breast Cancer Survivors, Created: Sep 2, 2007 12:42 pm
Breast Cancer at 31!!!!!!!!!!!!!!!!!!!!!!!!!!!!Roxanne
I think you can say "cancer at age 29!! DX at 31!" This shouldn't happen to any woman but when it's someone as young as you it is really heartbreaking. I wish you a complete remission until you are at least 100 years old!!! |
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Day to Day Matters + Research, News, and Study Results, Created: Sep 2, 2007 12:29 pm
Sisters StudyI got this in the mail too. I dumped it. It irked me as well, my name recorded somewhere of having a disease -- like I am contagious! Hit me wrong too!!!!
But it made no sense to me - I have to agree with others, looked like someone thought up a new unique way to collect money. That's how you get the money - do something different from everyone else. |
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Tests, Treatments & Side Effects + Breast Prostheses and Reconstruction Alternatives, Created: Sep 2, 2007 12:23 pm
New use for an old prosthesis?Old mastectomy bra's and prothesis could be donated to the American Cancer Society or other cancer group that donates, free of charge, such items to women who can not afford to buy them nor have insurance. It's a great act of kindness to help a needy fellow breast cancer sister. (wigs too)
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Support & Community Connections + Lesbians with Breast Cancer, Created: Sep 2, 2007 12:14 pm
ID senator Craig :(First - police are trained in the habits, vernacular and signals of prostitutes, gangs, public sex, etc. Police learn how to walk the walk and talk the talk.
It was reported that there is a signal that men send to each other when in public stalls. And of course that would have to do with feet in a stall -- that seems logical to me. Second - public gay sex became out of control way back in the 70's when all h*ll broke loose and sex anywhere anytime with anyone was the style of the time. Remember bath houses? So sex in a bar, park, bathhouse or public restroom was not 'hiding' -- it was very open and well advertised -- and not much space left on the grass late into the evening in those parks. Cops just ignored it back then. (pink ribbon, you're just too young to remember that era - I think - you sure look like a young sweetie!) Third - Craig's arrest isn't about gay sex. It's about sex in public places which is outlawed in all states. No one, not two men, or two women, or a man and a woman (or a threesome or more) is allowed to have sex in public. Thank God! Can you imagine a throw down in the middle of a grocery isle? Movie theatre? Hospital waiting room? Fourth - I don't find Craig a hypocrite. That's the media's inflammatory term to get you all excited to tune back in. That word - hypocrite - has to be taken in context of the situation. Just as I, when a smoker, was against smoking in public places, hospitals, etc. Against minors smoking and for prosecuting those who sold cigarettes to minors and supported all laws in support of above. I signed petitions to stop smoking in public places while puffing on my cigarette. Did that make me a hypocrite? No! I knew smoking was bad for my health and the health of others, I knew we needed to protect non smokers from the unhealthy smoke I blew all over their space and I knew I had a nasty bad habit that could kill me. I don't think that makes me a hypocrite. Just someone addicted to a very bad habit. (which I finally kicked) I believe Craig when he says he's not gay.There is a category of men who are not gay but do engage in sex with other men and do thoroughly enjoy sex with women as well. That is not the description of a gay man. He might just love "b**w" jobs. I work amongst the legal world and I recall a cop telling me about these little old ladies who performed oral sex in their trucks. Call them and they'll meet you anywhere -- behind your house while the little wife is cooking your dinner, in your company parking lot during lunch break, just outside your doctors office, wherever! These women are on social security and supplementing their income with oral sex jobs. And if it's in my town, its going on in your town too! They use trucks so the 'john' can be high enough to look for cops. And carry cell phones to be ever ready to head out to whereever the customer is. One of their favortie spots to meet is a car wash. Ever see a pickup backed into a car wash stall? That's whats going on. (Hmmmmmmmmm, got a husband taking the car to a car wash a lot???) I said to the cop 'these young men are using little old gray haired ladies in their 70's or older? That turns them on?" He said 'all they see is the top of their head!" Oh OK - got it! So maybe that's all Craig was after. That doesn't make him gay - maybe just a guy who is addicted to b**w jobs. |
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Connecting With Others Who Have a Similar Diagnosis + DCIS (Ductal Carcinoma In Situ), Created: Aug 9, 2007 07:17 pm
DCIS on biopsy but not in any of the lumpectomyI have read of this many times on various breast cancer discussion boards.
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Connecting With Others Who Have a Similar Diagnosis + DCIS (Ductal Carcinoma In Situ), Created: Aug 9, 2007 07:08 pm
Anyone had to educate their other care providers?I select only female docs - if possible. I've never had a male gyno.
I have 'cured' more ailments via Dr. Google then most of my docs. I think I just found another 'cure' for myself. Waiting for onc to call me so I can tell him I think I know what the answer to the problem is. Seems, I am doing more work then my docs - other then my gyno doc (she's great!). And I am tired of it. They get paid and I do all the googling! |
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Connecting With Others Who Have a Similar Diagnosis + DCIS (Ductal Carcinoma In Situ), Created: Aug 9, 2007 07:02 pm
New here with DCIS & abnormal cellsHave you discussed Tamoxifen and your liver damage with your doc?
Does he/she think you will need Tomax follow up? |
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