Bottle o Tamoxifen
Comments
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Jo- she (MO) says studies show the Aromasin is more effective on post menopausal women.....but I wonder if the trade-off is worth it! Thanks for venting!!! It gives credibility to my same thoughts! :-)
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to mstrouble16,
shame on your 'close' family member for telling you how to behave about your BC. They are the one who should learn to not speak unless they have something nice to say - as my dear old Mum always told me.
You have every right to every minute you feel down in the dumps and rotten and everything else because of BC. I truly think it's been harder on my psyche than my body.
My GP, who herself had BC 20 years ago, said it takes at least two to three years for BC to fade from your daily thoughts, and that's if nothing new pops up. Once we have had BC, I never feel we are quite over the fear it has instilled in so many of us.
I only read this page as my Dr just switched me to Tamoxifen from Femara when I discovered I had mets in January, so I know what's it's like, double time , to be dealing with all that goes with BC!
So have your pity party - having to deal with BC has earned you the right to!
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Thank you justagirl....it was just very very hurtful. And just this past November I had to have a core biopsy in one of my left lymph nodes. Oh yeah that made me SO happy too, everything was originally on the right side and I decide to have a bi-lateral mastectomy so I would hopeful cut the chance of it occurring in the other breast. It was kind of disappointing as I had just went for my first MRI and PetScan since the diagnoses...I was so looking forward to no more issues.
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mstrouble16: the thing about BC is the disappointment that it can seem like it's never really over. Somehow, the ghost of BC likes to follow some of us around.
If you are having daily issues with getting on with your life and spend more time unhappy than happy and productive, then maybe talk to your GP about an anti-depressant or anti-anxiety medication to help you get over this 'hump' time.
Yes,even people close to us can be very hurtful when it comes to how we feel about our experience and issues with BC. I would like to think they just don't think before they speak, but then sometimes I feel some people are just really self centered and selfish.
Give yourself a pat on the back for getting out of bed each morning and facing what each day brings. You are a brave and strong woman. Santa should put rocks in your relative's stocking on Christmas morning who hurt your feelings!
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Chachamom - I don't question the studies about Aromasin or any of the AIs. I just can't tolerate them. After failing with the Armidex and Femara my MO did not have me try Aromasin. In some ways I am glad that happened. I have heard story after story about the sometimes intense joint pain and other issues. Since I have been on Tamoxifen, the SEs have really been minimal and actually doable. I have 2 years, 10 months and 16 days left but who is counting. hehehe
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Jo, you are too funny with your ettt (estimated time of tamox termination)! I know so many women on AI's who have significant joint pain.I already have that w/o the drug, so I think I will probably go back on Tamox after this hiatus. I have three years and ten months to go......
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I am counting, 2 yrs, 7 mo and 14 days! I'm 70 and like Jo could not tolerate the Al's, the pain was horrible. My se's may not be typical because of my age and the fact that I am 20 yrs post menopause. I've had more than Jo but so far all manageable. Fatigue, some joint pain and peripheral neuropathy which caused some balance issues.
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Ah, the sweet sound of women who "GET IT"!!!
I hate the mental fog - it sometimes takes me so long to find the word I am looking for. I call it "buffering". It makes me feel dumb, especially at work.
Re the AI's, I started on them for 3 months and switched to Tamoxifen. I could not tolerate them. I am post menopausal and she said tami was better than nothing.
And I agree, people just think you can MOVE ON once you are done with treatment, and it just does not work that way. I saw my darling MO Friday for my 3 month check up (all clear). She asked me how I was, and I just burst into tears. I ended up leaving her office with a Rx for Zoloft and a referral to a psychologist. I have an appt a week from today. I just need to be able to dump my bucket to someone who is not my DH, family, girlfriends, co-workers etc., and who can help me tie all the crazy threads of my life together & make some sense of it. No shame in that, I guess. Too much of a burden for my DH, he is my champion and I know he is so worried about me. I am getting my ass kicked at work, and I just cannot work at the pace I did pre-cancer. The fog ... no sleep ... what a mess. I have always been everybody's rock and they just do not get that I cannot lift them all up any more.
OK, thanks for listening to me vent. Much love to all!
Debbie
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Girlpower, I was a basketcase on Tamoxifen and Arimidex...was only on them for 2-4 months each but my emotions were up and down like a yoyo..probably partially because it was also just after radiation but this site was my salvation and the women on this thread were a gift I gave myself every single night for a year...I wasn't really talking to others about it...it freaked them out..they wanted Sandee back and I was scared....not what they expected of me and I didn't want to burden them or feel weaker than I already felt....you will have more energy..the fog will lift or you will find ways to cope with it...remind yourself that this is normal and that you are not going crazy and that your memory will lift.
Not being on tamoxifen because of the blood clot it caused (and subsequent heart 'event') means I did not want to go on anything else but tried an AI anyhow...now I am medication free (well..not counting the heart meds I now live with) bu tI get scared between March and June while I persue thoughts of 'what if the Julymammogramshows cancer again?!?!?'....so yeah...we all 'get it' here...and even for those like me who only drop in occasionally these days, there is lots and lots of love and support and pillow fights to go around ! WHACK WHACK!
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I tried effexor for hot flashes..NO THANKS!! I thought I would come out of my skin. What started this whole mess with this relative was I said I didn't want to argue, and that I just didn't want any stress, then bam, I get slammed with how I'm not handle this will. Sorry I missed that section in the bc hand book that by year 2 you are to be completely well, shut up and act like nothing happened. I thought I was doing pretty well, considering I worked the whole time (whether it be at home or going to the office). Ok, now I'm just letting this person win. I'm done thanks again for listening! You women are the best!!!!!!!
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mstrouble16, unbelievable, you say you don't want to ague or have any stress and what do you get from this relative - Yep - all that and more.
I truly think some people don't know or want to know how to get along or NOT have stress in their lives.
Yes, let this person win, as you are the real winner!
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Just stopping by to say hello to my BCO/Tammi buddies. I couldn't handle tamoxifen - tried it twice - have now progressed to stage IV so HAVE to do SOMETHING, so am now on Femara (letrozole). I only agreed to it because I got a new MO and figured I needed to at least do ONE thing she suggested, and I have been amazed at how well I am doing with it! She did not try to minimize the risks of SEs like my previous MO did with the chemo and tamoxifen, but she told me it could cause lots of musculo-skeletal problems, bone loss, etc etc etc, and that the best thing I could do was to exercise an hour a day, and we are taking it a month at a time. She is SO understanding, does NOT minimize the issues. I might have been able to handle the tamoxifen with her, we will never know. In any case, I think of all of you often and lurk here to make sure you are all OK. I will be following the countdown for many of you - those of you who started when I did initially are about half-way there! Hang in there, my friends, and keep the BC monster at bay!!! (((((hugs)))))
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Hello ladies,
I am trying to search within this thread to ask a question but I don't see that option. Has anyone taken a magnesium supplement such as Natural Calm and if so was that okay with your Tamoxifen?
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surfette: I take magnesium daily as recommended on the bottle and have been on Tamoxifen since January without any problems. Also take 1000mg Vitamin C and calcium.
With vitamins and supplements, I think problems occur when a person starts to mega-dose themself without a doctor's supervision.
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I've finished 5 years of femara and now have started tamoxifen....does anyone else have this treatment? I'm having a horrible time with the tamoxifen.....it is starting all the menopausal symptoms again after my body already adjusted to the femara.
Anyone on tamoxifen have severe indigestion or chest pain?
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Linda ... glad to see you check in and that you are doing well with an understanding dr.
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I think I'm going to have a very difficult time switching to the Aromasin ...as much as I hate the brain fog, hot flashes, and hair/nail issues with the Tamoxifen, they are manageable and I am really scared about the bone and joint issues with the Aromasin.
Katymom - no indigestion or chest pain for me.
Depression issues yes....took Effexor for a couple of monhs but weaned off that and am tolerating the T fairly well now. It will be one year in May.
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Chachamom - Then stay on Tamoxifen. This is your decision. Don't let your MO bully you into switching.
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New to this thread, wish I had found it earlier, as it confirms all of the "imagined" side effects I've been having with Tamox. I am only taking 1/2 dose as it is (couldn't deal with the whole dose), and I feel like I can't concentrate, have no energy, can't form coherent sentences, can't sleep (tossing and turning all night) not to mention achy joints, thinning hair and other unmentionables. So, the last few days I took a break from the Tamox, and low and behold, I feel as though I can actually see the fog clearing in my brain, it is the strangest thing. This morning I woke up feeling refreshed as well, which is a first since I started Tamox 16 months ago. Then I read the same descriptions from others about side effects; boy, that makes me feel better, because everytime I try to discuss SEs with my doctor, she tries to get me signed up for yoga. Last appt she told me I need to drink more water, I may be just dehydrated. It's so annoying! My friend is going through menopause (with few problems) and her doctor has prescribed her hormonal creams "as a precaution". I, on the other hand, try to mention the SEs I am having and my doctor tells me instead that I really need to try and up the dose I am taking till I am back to the full dose. I feel like we are not in the same conversation!
I dread starting back up on Tamox, but I am afraid not to....
hugs to all of you dealing with less than sympathetic friends and family, that is so lame, but people definitely want you to go back to the old you so that they are reassured.
I'd better go and do some yoga now....
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Dr switched me to Tamoxifen from Femara in January. I had hot flashes with the femara, especially at night, but now it's hardly ever during the day with the Tamoxifen but at night I feel at times like I am burning up and sweating so much my hair is wet and I have to go change pj's ....and I only sleep in boxer shorts and a tank top. Even the sheets get wet. If my husband wasn't in the bed I would roll over to the other side!
Yeah, my Dr suggests yoga too - I'm just too hyper for something like that and I have tried but just keep on looking at the clock for when I can get up and go! Defeats the whole purpose of the class.
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gogirls - Welcome - Sorry we had to meet this way but glad I did. Your so called "imagined" side effects are so very real. Most of the doctors won't listen to what you have to say. They just want you to swallow that stupid white pill everyday. I had difficulty in the begining as well. I also have the brain fog and find it to be really frustrating. I work in a customer service job and have always prided myself on memory. Now that seems to be a thing of the past. I had thinning hair and nails and on the advice of others started taking Biotin - 5000mcg and that has really helped. I have been on this since Jan 2011. It doesn't sound like you and your MO are on the same page. What you may want to consider doing is changing doctors. Find one that will listen to you and is willing to work with you and fire the one you have now. You are the one in control of our body. You know what you can tolerate - they don't. On a side note, there is no way I could sit still long enough to do yoga.
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This is my 5th year on Tamoxifen my MO said we have the same decision to make about switching to Aromasin.He mentioned that with my history of arthritis everywhere it might not be worth taking it.Quality of life is important I am only in my 50's.But I am terrified of going off meds altogether.These decisions are not easy.
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I find it so disheartening to hear about so many MO's who cannot listen to their patients about what the patient is experiencing. As Jo said, if at all possible, it makes so much sense to do a bit of research, to find a doc that you can connect with.
I know mine is eager to provide me with the standard of care for my DX, and I am terrified at the idea of switching to an AI (either now after my Tamox hiatus, or at the end of two years) since I have pretty significant osteoarthritis, especially in my hands.
Fortunately, she is very good at listening to me, and figuring out together how we can approach my SE issues. The rubber will hit the road next week, however, because my "Tamox hiatus experiment" feedback to her is going to be that my sleep is much improved, my mental fog has lifted, and my knuckles are not feeling like they are being stabbed. Obviously, since I am sleeping better, my daytime productivity has also improved....and this is even while battling a cold. This level of "new normal" I can stand.....it is scary to return to the dulled, pained state I was in until a couple of weeks ago.
To add to this dilemma, I had a cardilogy assessment due to some symptoms I had a few months ago while taking gabapentin (for sleep). The cardiologist did a thorough review of my records, and evaluation with an event monitor, and while my heart is functioning fine now she wants me to start on a statin for insurance into my seventies (I'm 67), since my mother had an event in her seventies. I have slight plaque in a few arteries, but not high cholesterol. I read on another thread that people experience aching joints from their statins. Yikes! Should I be worried about this? I have never been so involved (and in an unhappy way!) with meds in my life! Maybe I need some yoga!
Sorry to go on so....
Mumito, would staying on Tamox be a therapeutic possibility for you? I'm happy to see that your MO can acknowledge the reality of the joint issues with the AI's, but can see how hard it must be to go without any little white pills, after being sold on them so rigorously. Good luck!0 -
Lacey12 - I am on a statin because I had a heart attack while on tamoxifen two years ago (caused a blood clot). I have not had aching joints...at least not in compatison to the A1 or tamoxifen. Hard sometimes to know if some of the aches and pains ar ebecause I am 50 now or whether or not it is medicatino related...not sure.
As for an MO who listens...can't beat it! I went in to mine 2 months after being on a AI(having been told that tamoxifen is no longer an option for me) and burst into tears...not very Sandee-like...because it was meant to help and be a preventitive medication, I went off of it...I was an emotional basketcase. My doc encouraged me to 'get on with my life' and 'live it' and to check back in 6 months or a year...she figured quality of life was better than being a mess for the next five years....Find a doctor that listens to you. She/he should be a support system...not an added stressor.
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Hey Sandee! How is your friend doing? I wish I had your MO. Mine is very good but very busy. I feel secure with her, but one of these days I sure would like to go see her just every once in a while, too. Right now it's every 3 months - I'm hoping that changes to every 6 months this summer - that will be 3 years from my diagnosis.
mumito - I feel the same way as you. I don't want to keep taking these strong drugs forever, but I'm kind of scared not to. My MO said after 5 years on Tamoxifen I will probably switch to an AI, but I think I prefer the SE's of Tamoxifen. I REALLY want to stop at 5 years per the original plan!
Lacey - yes, I don't want to be so familiar with so many drugs!
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jo1955 -
nice to meet you! ;-)
thanks for your kind words, yes I really need to find another doctor, I know. The first time I went to her was unfortunately when I found a lump - we had moved to a new city and I had to find new doctors, so obviously I was probably a bit excited when she met me, and I think she just sees me as a hysterical woman, which everyone who knows me would laugh about.
I think I would laugh if I went to a yoga class, I just can't imagine being able to sit still either.
One of my "new town" friends said to me recently, "you have thin hair, don't you?" Yes, I guess I do, although 16 months ago, my hairdresser used to thin my hair because it was so thick and dense.
Back on Tamox today - welcoming the fog back in...
Have a great weekend everyone!!!
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I have been on a Lipitor for 4 months and I have not experienced any negative SE. And my cholesterol is great! I was pushing 300 and it is now down to 160.
4 months ago I tried to convince my MO that I would like to just quit taking Tami, and she looked at me as if I had 2 heads. She said it was every bit as important as my chemo. So I just keep taking it. I am 55. I think my fog is worse with the tami, and I struggle daily with whether or not stay on it. Quality of life.
I am glad to see I am not the only one who just does not see the attraction with yoga. I went to one class and I too was looking at the clock wanting out of there. What I would really like to try is zumba! I will let you know how that goes, LOL!
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hmmm, if OH wasn't so far away for me, I'd go with you to Zumba class! That could be fun...
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My mind would like to go to Zumba class, and I would enjoy it, but am afraid this 60 year old body has been through too much in the last three years since I was first diagnosed. To think before that I did triathlons, etc....how time and BC changes things. I'm not supposed to bike ride or run anymore due to the Femara I took leaching the calcium from my spine and now I have three bulging discs - don't want them to slide more and touch the spinal cord - I have enough pain as it is.
It is of utmost importance to have a GP and oncologist you 'love'. I do. Hit the jackpot with my breast surgeon and plastic surgeon too.........and they were all women (not by preference)
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I've been lucky with my Dr's too. My PCP has been my Dr for 13 years and I've always loved him. The Surgeon is a General Surgeon that PCP had referred me to for gall bladder removal a few years ago. Every health professional I have seen on this BC journy has asked how I got so lucky to have the two best and most respected doctors on the Harbor.
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