ADH Club
Comments
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me too on the antidepressants . It's pretty depressing even for me and I'm well versed in disasters medical. ADH is its own borrow show cause you know the other show is going to drop but could be anytime .
My six months is coming up on 10/23. I'm a wreck already. But one good thing I did today was to set up Oncology appointment for two weeks after it.
Praying for all of us here
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tinkerbell--the risk of blood clots from tamox is very very low, <1%, (even lower with evista) and you can take a daily baby aspirin to lower that risk even more. (as long as aspirin OK with your doctor). And it is OK to have an occasional glass of wine!
Anne
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I will ask about aspirin good idea. I wish onc Would have suggested it. It seems I have to ask for everything. She's nice but not aggressive. I spoke with my cousin in law 17 years ago at 42 she had dc is stage 2 very aggressive. Been cancer free since. She suggested histerectomy. Onc told me I'd probably have to take tamoxifen any way since we produce estrogen in other parts of the body. I have an appointment next Wed with ps just to ee how procedure is done mx. I don't think I'll go that route yet though, not sure. Ughh!! I don't like this my brain has taken over and it's driving me crazy....
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ddw I wish you the best on your appointment. We need to figure out how to diffuse this ticking time bomb..
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and you too Tinkerbell.
Oophorectomy alone won't solve this . It certainly didn't for me. No ovaries, yes ADH and maybe cancer when I have mammogram next month
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ddw why do you think that ,is there something new? If not try to be positive it's hard but I'm a beliver of positive thoughts, bring positive actions. I keep reminding my self too. Is this your first 6 month..
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awb you took tomaxifen what if any side effects did you expierience? If you don't mind me asking. Did they remove your uterus too? Is anyone taking vitamin d 3 supplement? Sorry for so many questions but I need to make a decision for a little piece of mind
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Nothing new that I have noticed Tinkerbell. It's just that I am a person who never has any good news medically. I live from one life threatening illness to another with a new and serious dx every single year so I am expecting this to be the same. This is the first follow up Mammogram for me.
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I take 4K Vitamin D3 daily to answer your D question.
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I think you should try to be positive. I know all his worrying is not healthy for none of us. Please be positive at least try. On the vitamin issue they told me 2000 daily. Blood work in three months the goal is 50 on results. On a happy note I convinced myself to leave the house today, I did my nails and I bought a new outfit. I did have a panic attack at the store but I took a couple of deep breaths and it went away. I couldn't bring myself to do groceries so I came home. Will attempt to do them on Sunday. Baby steps I know once I get a plan in motion I think I'll feel better. Maybe a little outing will help you as well. Lots of hugs....
luck does change...0 -
Tinkerbell---My gyn recommended Vit D 1800-2000 per day. The only SE I remember from tamox was very early on I did have a bad yeast infection, as my body was adjusting to the medication, but it cleared up quickly with diflucan and I never had the issue again. I really didn't have any other SEs from the tamox. TAmoxifen is generally well tolerated by most women, with hot flashes being the most common SE. (any SEs that I had were caused by my TAH/SBO due to the decrease in estrogen; yes, I had everything removed--uterus, ovaries, tubes, cervix; it was NOT by choice) Even without ovaries, you still produce estrogen in the adrenal glands, skin and fat.(so I still had to take tamox after my surgery) Honestly, with only ADH and no family history of breast cancer, medically you don't need to have a hysterectomy, oopherectomy, or mastectomy (those are all major irreversible surgeries with lifelong implications.). You could always try tamox and stop it if you couldn't tolerate it.
Anne
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Anne thank you that's what I'm thinking. Just praying I can tolerate it. (Tomaxifen) The vitamin d3, that's what they said 2000 daily. I bought some today.
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I needed to take 4 k vitamin D to get up to 50 but that's going to depend on where you live. I live in the frigid NE.
Good to hear you got out and did some nice things Tinkerbell. I wish I could be more positive but I am not crippled by any of it so far. I work through it all and I socialize with people and I do holiday things with my synagogue group and I've recently done some traveling. It's just that I wake up every morning incredulous about my bad crappy medical luck . I also have type 1 Diabetes which requires constant daily shots ( 6 X a day) and attention of some sort every two hours. I also suffer with chronic pancreatitis which requires frequent hospitalizations so actually I think I handle all of this as well if not better than most could. The near Breast Cancer is just too much now on top of it.
Sorry for whining . I'm listening to you too and routing for us all.
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oh no not at all you are definatley a strong women. That's why were here
to give eachother strength and support. Yestarday I was positive I wanted tomoxifen after reading 114 reviews not so sure none were good. The one that didn't have side effects after 5 years had 3 liver tumors.
back to the drawing board surgey sounding better everyday.0 -
Just keep in mind that dissatisfied/unhappy people are far more likely to post than those with no side effectsto speak of. Still a very hard decision...
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I've seen lots of women post here that they had no side effects to speak of on tamoxifen. It also does not kill your sex life because tamoxifen does not eliminate estrogen production. It stops estrogen from binding to receptors in your breasts
The fact is that statistically women who have ADH will NOT go on to develop cancer, especially with genetic testing that shows no problems. Even if you had a BRCA mutation in a parent you only have a 50% chance of inheriting it.
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And as for me I am always a statistical outlier . Endocrinologist said she very rarely diagnoses type 1 Diabetes in someone over 60. So I generally know to expect the worst and plan for as best as possible
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Hi Melissa have you tried tomoxifen? I just don't want to put something in my body that can cause so much damage I heard tamoxifen puts you in menopause. Removing ovaries reduces chances by 50% in premenopausal women. I'm 49 my mom went through complete menopause at 51. So I'm seriously considering it. I just feel terrible taking that drug it scares me to death.
And like you said it's adh and most women don't develope cancer. I just don't want to be a sitting duck. I Read tomoxifen does interfere with sex drive because of the menopause symptoms.
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I'm just throwing that out there for anyone new who might be reading who might be scared by your posts and convinced that they too are doomed to cancer when that is most probably not the case. I know you don't choose to believe it
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I just want to weigh all my odds everyone is different I'm sure there's a lot of women that are doing great on tomoxifen . Me personally i am very scared. I have checked reviews and yes momo u are absolutely right most people that right reviews are the one's with bad side effects. I'm just expressing my feelings towards it. I am not trying to scare or tell anyone what they should do. I wish there was. A Discussion board on these types of drugs and what have they expierienced while on them.
Maybe we could get some positive feed back.
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Tinkerbell, I'm sorry, I should have said I was replying to Ddw about being doomed to get cancer. I wasn't trying to say that concerns aren't justified. Just that it might not be as bad as the gripes would indicate. Like you said, the people who don't have trouble don't comment. I am disqualified from taking Tamoxifen or Evista because because I had a pulmonary embolism when I had ovarian cancer. having a prior blood clot history precludes you taking it.
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I also am precluded from taking any of these drugs due to other medical conditions. If I could I would at least try because I think I would feel less like the " sitting duck" that you described . It would be important I think to have the option at least. Options are what we all hope fo
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No need Melissa and I definitely do not want to influence no one, but I feel by taking tomox I am endangering my life to prevent a cancer I may never get regardless. On the other hand I don't want to regret it later. I just think it's very cruel to put a human being in such a predicament. Yeah you reduce your chances of breast cancer in return for your quality of life and maybe even getting another type of cancer. The way I see it it's like making a deal with the devil. I have had difficulties in my life but this is the worst. I'm sorry for rambling on but my quality of life since the diagnoses has been
. I need to make a decision. I really wish there were at least a couple of good reviews but I can't find any. Evista on the other hand I'd probably give it a try reviews are much better. But I am still premenopausal.0 -
I know. I haven't been able to talk myself into Aromasin yet either. I would have much preferred Evista based on the side effect profiles. What is a shame is my surgeon felt like there was no reason to think I was at risk of clotting in the future. It was just a result of having been so very ill. The onc still said no
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This is the reason I'm considering complete ooperectomy and hysterectomy. Maybe then I Can take Evista. I'm moody now my libido has taken a vacation, (lol you got to laugh sometimes), due to my mind rambling and constant research. So if this is a possibility I might seriously consider it. I Have my appt with ps Wed anyway just to get facts on surgey. I guess that shows how terrified I'm am of tomox.
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One of the most common side effects of Tamoxifen is low libido: http://www.breastcancer.org/questions/tamoxifen That said, as mentioned here by others, everyone is different...which is one of the really frustrating things about all this. You can't anticipate very well (in advance) how your body will respond. You can try it and if the side effects are not tolerable, you can stop and the low libido issue should abate as well. Tinkerbell, if you have not already done so, talk to an MO. Find one who is a good listener and can advise you based on both your medical history and quality of life priorities. I had a consult with an MO that I found to be extremely worthwhile. He was rationale, contemplative, informative and did not try to scare me into a particular choice. I'd recommend you ask whichever doc knows you best to recommend someone who would be a good fit for you. That can make all the difference in the world. Best of luck.
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sorry I am pretty new and not sure what mo stands for sorry. I probably sound silly asking.
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Thanks ladies for listening.
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MO is medical oncologist
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Thanks!!! Yes I'm going to find another mo and see what they recommend. I want to here aternatives other than tomoxifen it's like they've been trained to make it sound great. If you don't ask they don't go into details of se's. It's like if they were prescribing you candy.
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