Bottle o Tamoxifen
Comments
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Basha, yeah I always thought bipolar would be my one major illness in this life. Wrong!
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Jisman - I love my curls....I had one hair cut in Dec, it has been 8 weeks now and I think I need another, but like you I am not sure. Basically last night, she just cut it a bit and gave me some shape around my ears and in the back. Now she is out on maternity leave and I need to go to someone else...when do you put in the gel...I am no good at hair product stuff...
my onc suggested neurontin...but guess we will see after the 6 weeks...no change yet in how I feel. I am thinking if I am going to see a difference, it will take a week for the tamox to get out of my system....what do you gals think about the 6 week vacation?
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Kimmy, I am going next week to see my Doc. I hopefully will clear this up. I know I asked him twice and he repeated that they don't test for the receptors because they are always there with the BC. Just wondering if anyone has heard this before. BTW, how did your Ins. co. send you the test?
Jeanie
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Jeanie, I would question your onc about triple negative bc then. Just a thought.
Hugs,
Trish
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They called and told me to expect it in the mail. It was 4 q-tip type swabs that I rubbed in 4 different areas of my cheek and then I sent it back to them. They said they would send my doctor the results and then he would talk to me about it.
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Hi girls - Thanks to all for your kind words about my brother-in-law. We are having a memorial service on Thursday and a reception following the service. His ashes won't be up here from Florida, but my MIL didn't want to wait any longer. We'll have alot of tears and alot of laughs on Thursday. As I go through old pics for the service, my 15 year old son is making fun of us - recall the short shorts and big hair from the 80's!!!!
I hope everyone is doing okay ... I hit my one year anniversary for diagnosis. I can't believe how fast the last 12 months went by, just not when I was going through it, though!!
I'm off for now, have lots to do.
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Sharon - I put the gel in shortly after hopping out of the shower. Says it can be used on either damp or dry hair. Definitely looks better.
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Hi ladies-I had the tamoxifen test but by blood sample. Luckily it came back that I should metabolize it well as I have the enzyme that the body needs to make the tamox work. Am finishing up rads and will start taking it soon...am hoping all goes well.
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kimmy, thanks I will tell my Dr about it.
Jeanie
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Prayre, thanks
I am certainly getting an education on this site
Will keep you posted
Jeanie
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Jeanie,
How are you? Hope things are going better.
Karol
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Hi Karol60, I go to the onc on the 12th. I noticed you had a DX of dcis also. I am still wondering why he does not test for ER. I thought maybe it was because of the dcis dx. but that can't be if you were tested . As I said, I love the Dr. and have (I thought) total trust in him but am preplexed!!
Will let you know later, thanks for the email. It seems friends and family care but don't really understand what I am feeling.Guess you have to go though it yourself.
Hugs
Jeanie
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I have been on Tamoxifen for 6 weeks. It has been OK, hot flashes, night swets,leg cramps. The leg cramps have been diminished with magnesium. The last few days I have had crying spells for no reason. I am a basket case! I do not know if it is from the tamoxifen or if my period is due. I have not had one since November. Has anyone had this happen after being on it for awhile?
D
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priz47,
I have been on Tamox for 3 months now and my se's are similiar to yours. I go through the same crying spells for no reason. My periods are irregular and when I do get it, it seems like it's right after a crying spell. Also, my usually VERY heavey periods are VERY light now. I'm guessung I am a bundle of hormones prior ro getting my period and that's what makes me cry. Are we having fun yet????????????
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jisman - thanks for the gel advice...will pick some up today
the crying spells...I had one in Jan, and am definitely in the midst of one today....woke up just feeling depressed. Ran after church, and still felt the cries coming on....sitting in the sunroom now trying to see if that helps. I am temporarily off tamox, and don't have periods...guess I should write it down...i thought it was the effexor so quit that...need to go back on this link and find out when that last one was....
I also think I am kind of going through an angry phase about not being myself if that makes any sense?
murphmort - hope your family continues to heal in the days to come. Congrats on the 1 year mark
Sharon
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Good morning. Thanks again for the support for my family ... we had a nice service and included in the eulogy how my BIL was so supportive when I was going thru treatments.
I did receive a phone call regarding my TVU results. They said I have a cyst on my ovary and want me to have another TVU in six weeks. I have to schedule that for mid-March. I also got my period on Friday and was totally exhausted this weekend. It was a long week anyways, but at least I didn't get it during the service on Thursday. I also met a BC survivor at my BIL's service - 4 years out .... we hugged and started laughing because she was having a hot flash!! That darn Tamaxofin!
Ovarian cysts are one of those side effects - but what do they do when you get one other than watch it??? I do know if they burst they are painful. Anyone experience the cycsts while on Tamaxofin?? Thanks.
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So is it the tamoxifen or the lack/surge of hormones or just cuz I have BC that I cry??? Today I have cried almost all day and feel so helpless. I am going to see a therapist and hope he helps. But I cannot work and cry or do anything and cry! I feel so out of control. I tried Effexor but that made me feel worse!
D
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Hey Murph, I'm glad your BIL's service went well. You've been on my mind...
Regarding the ovarian cysts. Yes, I've experienced them while on Tamox. Also had the TVUS, and 6 week follow up, only to find more cysts on the other ovary. My cysts are presenting as "complex" with septations, so a little more problematic. My primary doc asked me to talk to my onc, who concurred that it could be the tamox, and suggested it was time to see a Gynecologist. (My pcp is a physician's assistant). So my HMO suggested I see a gynecological oncologist, who is both a gyn and an onc, and well versed in the effects of tamox. I see her Wednesday and I'll report back.
Barbie
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priz47,
I wish I had an answer for you. I feel the same way. Am I depressed because of my dx so I cry? Is it the tamox? Lack of estrogen? All three? Something I haven't even figured out yet? I do have many happy days, but I also have days when I could cry all day. Perhaps we should map these out to see if they coincide with our cycles? I'd love to hear what your doctors say. You can PM me any time if you need to talk, cry, whatever!
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Thanks for the info, Barbie. I did call yesterday and scheduled the TVU for early March. I see my medical oncologist right before my follow-up ultrasound. I also have my follow-up with the surgeon three days after the ultrasound and will be sure to ask about the cysts.
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Has anyone been getting hot and cold flashes/sweats from tamoxifen? All of a sudden I am getting both.
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priz47 - I had similar experience but I have not been on tamox a full 2 months yet. I still have no period. I did go through the crying spells and was put on Lexapro - thought I was worse with it, but stuck it out and am getting better. I read on the depression sight that sometimes your symptoms can get worse while you are adjusting to the antidepressant. This may not be the same for you, but it is some information that might help.
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Makraz- like you I haven't decided if the crying and saddness is multifactoral or meds. I think it is related to lack of sleep, diagnosis, surgery, tamoxifen, etc.. I do have less sad days as I call them and less days when I feel like crying all day. My wise friend said someday I will reallize I am having more happy days than sad ones and by golly she is right. One day i just went to bed as I couldn't deal with myself. Interesting thought correlating them to our cycles. My periods were always very irregular and now I am on lupron so I haven't had a period since Nov. I have been on Tomoxifen for 2.5 months.
Joyce-NJ I do have hot and cold flashes too. Fun, Fun
Priz47- I am so sorry you are going thru this. Good for you to see a therapist. I hope it is helpful to you. It helped me to read/share others experiences on this board. I have fanastic friends and family who have helped me get thru breast cancer and treatment. It also helps me to talk to someone not emotionally involved. . I finally went to a support group and a therapist.
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Thanks for the support. I also have cold/hot flashes. Sometimes i get goosebumps and cold about 5-10 minutes before a hot flash. Always worse at night. I am still on the fence about the antidepressants. I am afraid of more side effects. I did go see a therapist on Monday and it was very good for me. I will continue to see him weekly. I sat and cried most of Monday but feel better today.
D
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Yikes! My bottle has arrived and I don't have a reservation on the train!! Room for one more?
I am trying to get up to speed on this whole Tamoxifen thing as I didn't anticipate taking it. (Background info: I am a very young 58, post-meno, was on HRT for 5+ years (probably a significant contributor to my BC as I have no family hx and not a ton of other indicators). DX IDC in July 08, had lumpectomy in August, underwent 4 rounds of TC chemo in Oct - Nov, then radiation Dec - January. Several weeks into radiation I started having severe hip pain, then entire left leg pain (severe, as in not sleeping for weeks, and once I got pain and sleeping pills could only get about 2 hours maximum sleep and then cry / moan until time to go to work). After hip X-ray, Hip MRI and lower back MRI it was determined (thought-to-be) a possible L4-L5 herniated disc. My hip / knee orthopedist referred me for two steroid shots in my lumbar area, neither of which worked, and told me to see a spinal surgeon. Instead, I have been seeing a physical therapist for a week or two and no magic, but some easing of the pain. So, still in limbo with the back issue and still dealing with pain and uncertain as to what the outcome may be.
My question / concern is this: Being post-meno, I assumed that my onco would prescribe Femara or some type of AI; however, because of the pain I was in (and history of being stiff, possibly mildly arthritic and the similar side effects of most AI's) she prescribed Tamox, instead. I am not trying to second guess her judgment, but I am wondering if there are other post-meno women on tamox on this list and what your experiences have been. My onco also suggested that we could change over to one of the AI's in a few years and it would have the same tx effect. Anyone else in similar circumstances or have any thoughts on this?
Also, I did not undergo any of the tests (regarding metabolism of tamox) that I have seen referenced here. Should I insist on those before starting my RX?
As for the train ride, I'd prefer a window seat, if one's available (but then again, if what you all are saying about having to pee all night rings true with me, I better stay on the aisle!!). I have not started taking the tamox yet, but anticipate that I should within the next few days or weeks, so would like as much knowledge up front as possible.
Thanks for your insights and best wishes to you all! Rickster
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I have been taking Tamox for 3 days and so far no side effects. When should I expect them to kick in?
I'll be off the Tamox in a month though, since I'll be getting a Lupron shot and then switching to AI, and I'll also be entering the SWOG bisphosphonate trial within a couple weeks.
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Justsaying,
I am just curious, why did they have you take Tamox if it you were only going to be on it for 1 month? Do you mind me asking which Hospital you used? I use Beth Isreal.
My guess is you will be off the Tamox before you start having side effects.0 -
I met with the Gynecological Onc yesterday. She is recommending that I stop the Tamox. and go into full blown menopause - either medically (Lupron shots) or surgically (total hysterectomy). She also strongly recommends that I have BRCA 1/2 genetic testing. A genetic counselor recommended the test a year ago, but I never pulled the trigger for numerous reasons.
Gyn Onc said that I have "angry organs". That the Tamox is causing my pelvic pain OR the Tamox has fired up my endometriosis, resulting in the pelvic pain.
My choices are to stay the course on this Tamoxi-train and just suck it up (20 days out of my cycle I'm in pain - the other 10 can be considered uncomfortable). Or go into menopause. I'm 44, single, no kids and realizing that my fertile days are numbered, but this is a big, and very difficult decision. I need to go back to my medical oncologist to discuss the recommendations of the gyn. onc., and ask a few more questions. I might also see if I can talk with someone who has been on lupron.
I'm just blue - nothing about this disease is easy, and even decisions that may seem clear-cut can be quite difficult.
You folks have been so great throughout this whole ordeal - I couldn't do it without you!
Barbie
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Barbie,
Sorry to hear about your pain. You're right, nothing about this is easy. I'm glad we are all here for each other too.
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Barbie- hugs girl. I've been thinking of you... (I think you need to join Facebook!
) What a difficult decision... Sounds like you are processing it logically and looking at all your options and getting second opions. I am SURE you will make the correct decision...A former co-worker of mine who is a couple of years older than me was diagnosed with DCIS/IDC and her medical onc at Sloan (my original doc) put her into the early menopause. She had one child already... She did the BRCA testing and it came back inconclusive... Her dad did have prostate cancer, and I believe that there is some kind of link there.
I can understand how the BRCA testing is a hard decision. I ended up having it... Just for my own peace of mind. I tested negative, but I'm convinced that I have the BRCA 3 or 4 or 5 or 6 or 10,000 gene that they haven't identified yet.
I have my breast MRI next week... A co-worker (my director) who was ever so supportive of me through my whole cancer deal died suddenly of a pulmonary embolism. The wake was yesterday and the funeral this morning. It's been so sad and such a shock to lose her so suddenly...
Hugs girls...
Virginia
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