Bottle o Tamoxifen
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Greetings ladies. Just found this group and will enjoy reading your posts!
Bgirl/Jocelyne ~ I am 8 wks post op - lumpectomy surgery and have completed 7 of 36 rads. treatment. In the past 2weeks I have had a 2 vaginal ultrasounds and a hystosonogram and endo. biopsy which have discovered a polyp in my uterus. Hysteroscopy/D&C scheduled for the end of the month. I asked MO for ultrasounds initially because of pain/bleeding/bloating/spasms before I even considered Tamoxifen.
Endo biopsy was benign, but w/polyp I do not feel comfortable taking the big 'T' at all. I have a friend who developed uterine CA after 2 years on Tamoxifen and I dread having to worry about this. Will discuss w/ MO Tuesday re: 'plan B' I agree with gal who said 'Da*ned if we do and Da*ned if we don't'........sigh. There's gotta be something else.
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Yes, there is a document on another thread about Tamoxifen that someone posted that lists UTIs as a side effect. http://community.breastcancer.org/forum/78/topic/800311?page=1#idx_1
I haven't experienced any UTIs so far. When did they start to surface? I've been on Tamox for about 3 months. Just one constant hot flash, bitchiness and forgetfulness. No more periods, however-hooray! I wonder if any of the side effects start to calm down after a while? Thanks.
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Been on Tamox for a little over 2 years and did have a UTI a couple of months ago. Couldn't figure out what caused it. Guess I know now. Tamox sucks.
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Hi ladies. Sorry it's been forever, needed some BC free time, but have contined to think of all of you. Hope this finds you all well. Will spend the next couple of weeks trying to back read and get up to date. Since we last spoke, I have been off Tami for about 3 months now. Was on it for about 14 months and all was going well. Back before X-mas my pain doc ( spinal neuropathy thanks to chemo) but me on an experimental inflammatory med. I was on it for about 2 months when I started experiencing an increase in hot flashes and trouble sleeping. This went on for about a month until Jan. I had been unable to sleep for 3 days and I was having hot flashes every 30 min. These hot flashes were so severe that I would break out in a full body sweat then shake uncontrolably 5 min later from freezing to death. After 3 days of this I had a seizure and was taken to cancer center. My oncologist was stumped as to what was wrong. He medically knocked me out to get some rest and spent 4 hours on Internet trying to figure it out. Was the new inflammation drug. Was taken off both it and Tami. Took a couple of weeks but finally got straightens out. Remember ladies to check and cross check any new mess with your Tami, the side effects can totally suck.
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On Tamox for almost one year. I was prescribed Lyrica for a disc issue, but that made my fuzzy and forgetful. (Seriously, I would get lost in the middle of sentences). My primary care doc decreased the dosage and fuzziness went away, but then the foot tingling started. That soon became pain in my heels upon standing/walking. If I up the Lyrica, the foot pain goes away, but I am back to a walking block of confusion. I have an appointment with the onc. on Thursday. Interesting to read here that for many Tamox also contributes to memory issues. That and the weight gain. Maybe I should look into the ooph....
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fitzdc - I also have disc issues and tried Lyrica. For me it made my feet and ankles swell so bad that I could not get shoes on. Stopped that and my pain management doctor put me on Amitriptyline 50 mg and that helped for a while. He switched me to Nortriptyline and all the pain is gone and I function very well. Both medications are anti depressants that are also used for pain management. The added bonus with both is I sleep very well most nights. Talk to your doctor about one of these.
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Thanks, will ask tomorrow. It just seems for every med, I need another for the SEs, then another......
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Ok, ladies haven't been on the site for awhile, just rying to get back to normal. Can you make me feel better, I've been having some breast tenderness, and tenderness of the lymph node surgery site. Mostly it feels like I'm going to get my period. Is the the Tamoxifen? caight that horrible cold that was going around and have been fight some chest congestion that is definitel differnt than ever in my life as well. Thank you radiation!
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Been taking the Biotin for about 2 months. No noticeable improvement in hair or nails. My nails were great after chemo ... hard to believe - but they are crap now, peeling and thin. I think it is because of the tami. I miss my old hair!
Jocelyne - the "salpingo oophorectomy" (remove ovaries & tubes) was a piece of cake. I had it Thurs and was back at work Monday. You cannot hardly even see the tiny little scars, and they did most of thru the belly button. It was just peace of mind for me.
Debbie
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Am in total empathy form you, Girlpower. I keep trying to figure out what kind of a hairstyle I will need to adopt to make my thinning hair not too noticeable. I always feel badly complaining about this when so many other women have totally lost their hair, eyebrows, etc. during chemo, which I escaped. But it's just another insult to the body. I can stand having crappy nails, which were always decent, even tho I don't get manicures, but the thinning hair just bothers me more. Sorry to hear that the biotin is not working for you. I plan to ask my MO about that when I see her in March.
Glad it IS working for you, Jo.
Have a GYN appt (yearly) in a couple of weeks....anything I should be asking her related to the tamo?
I have't been having any noticeable symptoms of problems in the gyn track after a year on this. Does a regular exam suffice to make sure all is unchanged? Thanks!
Happy Valentine's Day everyone.....0 -
Lacey12 - On the advice of others on this thread, I asked my GYN to do a transvaginal ultrasound the first year I was on Tammi and I'm sure glad I did. I have severe uterine thickening and had to have a hysteroscopy (biopsy) and a D&C. This last summer, asked for another one and it turns out I had to have another hysteroscopy/D&C plus my doctor removed a 3cm polyp. This year when I have my annual exam in June I want to talk seriously about doing a complete hysterectomy. I am 57, postmenopausal for 4 years. I don't need the plumbing or the worries in that area. If you have not had one done already, ask for the transvaginal US to establish a baseline and for piece of mind.
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Thanks for that advice, Jo. I had mistakenly thought that you had the trans vag ultrasound because of some noticeable symptoms. I will talk to both MO and GYN about this.
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Lacey12 - Thickening of the uterine lining is a common side effect of Tamo. How thick depends on each person. The first year it was more than enough for my GYN to get it out of there. I believe the second year there was some thickening - not as bad as the first but while he was taking out the polyp he scraped my uterus again. I have read numerous posts on this so it is happening to many. It never hurts to have it done. It is not painful at all and takes a few minutes.
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Sandee!!! So glad to hear from you again! You sound great - what an awesome experience you are having in Qatar. I love the way you just throw yourself into things like choir and karate (and dance). I want to be like you!
I know your friend's surgery is today. I am sending up lots of love and prayers for Anita. She sounds like a great person. I hope she feels all of our support and I hope you get to talk to her ASAP. Please let us know how her surgery went.
Tamoxifen is not bothering me very much, but I still think it just causes overall pain. That could be my fibromyalgia, too, though. But it was never this bad before chemo & Tamoxifen. Maybe the Tamoxifen just keeps it flared up? There's no sense asking my MO because they all deny ANY side effects from these drugs. I hope to join the local Dragonboat racing team next year. I know things like that will make me feel better. But I have to start small - thinking about signing up for water aerobics, haha.
Hope to hear again from you soon!
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Dawn- oh boy..you have been through the ringer. Hope you feel better soon!
Dexxy - it has been two years post surgery and radiation and my breast along the ribs still gets sort. I wore a camisole with some sort of lycra in it for the first 8 months, switched to non-wire sports bras and started to go to a lymphodema massage therapist. it was well worth the money and Sandra got me back into my regular bras and painfree in no time...well worth looking into and no medication required..
Heartansoul - SO good to hear from you....I have realllllly missed you gals! Qatar is treating e well..trying to get involved with the breastcancer survival groups here but they don't write back or call back so it is hard to get involved. I was introduced to Terry Fox's sister as a 'survivor and member of the team' on Tuesday so guess Admin. here does know I am a survivor.
Thank you for focusing some love on Anita today. .I heard from her an hour ago on her way to the hospital and know she is surrounded in a lot of good thoughts. Thanks for adding yours. I will share her results as soon as I know. She is an amazing woman..has worked with survivors of spousal abuse her entire life and is a caretaker to all....
Good for you for signing up for water aerobics and dragon boating! Maybe will meet up sooner than later then! I can't wait to get back in the boat with my gals in July...oh boy was it a HUGE part of my healing...not just physically (though it also caused some rib pain while I learned how to do it properly so don't be like me and be overzealous) but emotionally...to be surrounded by survivors...strong women, 3x every week.....what a massive gift to my soul. Go for it! Oh you will love love love it! big hugs coming your way heartandsoul!
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GirlpowerDebbie, thanks so much for the info. I'm so glad you are doing well. You really helped me feel less anxious!!
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Sandee - people like Anita that work with survivors of spousal abuse - and all abuse - have such a hard job. I can't imagine doing that without absorbing some of the pain, too. Most women have such empathy, sometimes so much that it hurts. I would be a terrible psychologist - I would be crying right along with them and they would leave feeling worse than ever, haha! Praying for good news from Anita!
Did I tell you my brother bought some land along a river in Nova Scotia? Maybe next time he goes up there to go camping I can go, too. He only goes about once per year, and I think he goes to get away from it all so I don't know if I would be welcome or not, considering I'm probably part of "it all", haha! But I can ask!
I haven't done any breast survivor group kind of thing since I was diagnosed. You would think in a big city there would be groups all over the place, but the only one I know of near me are all women 20+ years older. I think I'm going to try it anyway, though. Lately, I've been hearing more and more how important group support is.
Dexxy - I've still been having tenderness on my ribs and sometimes on my breast 2 1/2 years later! I did just have a bone scan in December and they said my ribs were fine, so at least I know it's not bone mets. Our minds seem to go to the worst places now! Your cold (and coughing) could have aggravated your now-delicate surgical area. I think I caused myself some breast pain last week by throwing an apple out into the woods to feed the wildlife. I guess I can't do my old softball pitch anymore....
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Heartandsoul: Yeah....we women do indeed absorb pain. Anita and I actually met when we were counsellours at a transition house for battered women....I was too spongelike, however, and only lasted a couple of years...worked with homeless youth and then taught EFL...Anita stuck it out and is a fantastic support person...so thank you for adding your thoughts in her direction. She is used to giving and not recieving.
As for the support group...this on-line resource has been such a gift. This is whereI poured out my fears and anger...somehow thought it would leak onto others if I did it with friends...they were freaked out enough without my telling themhow afraid I was on a daily basis. The dragonboat group is also about support and getting stronger each day. Not much whining there, I can tell you. Most of the women are older than me...there are a few of us in our late forties or early fifties....but most are retired women and they are so incredibly strong in body and spirit. oh do try it...guaranteed you will love it.
As for ribs...since radiation, mine go out of place...massage really helps as does oesteopathy. I haven't had to go for a couple of months (knock on wood) but my massage therapist in Halifax says that it is a side affect of radiation and can last a couple of years as it softens the cartilage...but it heals..you will soon be tossing aples at full pitch!
If you are ever in NS and I am back there, you can forget about your brother's cabin and come and hang whereever I am....no idea where that will be at the moment but you would be more than welcome!
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Oh, I forgot! Yes, this online support group IS my support! I would have been lost without all the help and advice you get on here - still need it. I tell people it's like getting the advice of thousands of doctors from the women who asked THEIR doctors something you're wondering about, especially when your doctor's answer wasn't quite enough.
My MO tends to be "yes" or "no". I LOVE it when a doctor elaborates - that's my breast surgeon. He even gets into the science of how and why and it's great listening to him.
I'll try to talk my brother into letting me tag along next time he goes to NS. Then you and I can get together and he'll have his quality "alone" time, haha. Why do men want to get away from women so much...hmmm. Must be them!
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It is 2:53 am, I've been up over an hour waiting for the pain in my foot joints that woke me to subside enough to get back to sleep. I've had to use twice the perscribed dose of my pain killer, usually 1/2 is enough. Right now I want to throw tamoxifen out and never hear that word again.
I'm sure it is the cause. In January I took a two week break from it and this pain went away completely, after a week back on the med the pain was back as bad as before. Every night now for over two years. And then there is the neuropathy, the balance issues, the chronic fatigue.
please God, can I cry now? I am so tired of being tired, of being so weak and hurting so......
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chabba hope you got some relief and some sleep. I think we all deserve a good cry now and then.
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I have been on Tamoxifen for a little over a year now. I went about three months not having periods and having hot flashes but then the hot flashes stopped and I started having periods again. Has anyone else had this happen to them? My Onc. has suggested removing my ovaries but says that doing that is controversial.
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chabba, I have taken breaks from Tammi and I know the feeling about the aches and pains going away. I almost felt human again on the breaks. Hope you are feeling better and hope you can get some relief. Are you taking anything for the neuropathy? If not, I do have a suggestion.
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Sandee it is so good to hear from you, sounds like you are busy in Quatar. Sorry about your Friend Anita, I hope everything went well with her surgery. I know I am late but i will pray for her healing and whatever treatments she will have to go through.
daisymom-good luck with the rads and plan B.
Dawn-Wow what a story. Can't believe what all happened to you. My MO has given me strick orders not to take any drug from another Dr without calling his office and letting them check it out first. Kind of a hassel but worth it.
For those of you with hair loss. I have been on biotin for about a year and a half. I started lossing too much hair and my hair was thin to begin with. The biotin has really helped my hair. Has not done too much for my nails , so I have gone to fake nails. I know it is not the best but could not stand the thin and peeling.
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jo, any suggestions would be appreciated. My Drs haven't really suggested anything that helps.
Thanks
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chabba - My neuropathy comes from permanent nerve damage from rads. I tried Lyrica and all it did for me was make my feet and ankles swell to the point I couldn't get shoes on. A lot of ladies are put on Gabapentin (SP?). Unfortunately that is in the same class as the Lyrica so that would not work for me. I saw a pain specialist for a while - he closed his practice at the end of 2012. Anyway, he started me on Amitriptyline (Elavil) 25mg for a couple of weeks and then moved me up to 50 mg and it worked for a while. This is an antidepressant that is also used for pain management. It is taken at night since it has a sedative effect - the bonus, good sleep. Yay! After about 8 months, he decided to switch me to Nortriptyline which is a step up from the Amitriptyline. I take it in the morning and he put me on 75mg. My PCP is monitoring the drug and gives me refills when I need them. These two medications are safe to take for an extended period of time and if you go off of it you have to be weaned slowly. In general, I feel so much better. No pain! It would be worth asking your doctor about this and at least giving it a try.
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Thanks jo.
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Jo - I am so glad you wrote all that out again. I had asked you about this before, and sure enough my doctor gave me Gabapentin. It didn't help me. I've had some migraine medicine that puts me to sleep that ends in the triptyline so I'm going to ask my doctor for one of those. I just ache all over and I don't sleep well, so why suffer? Chabba, I hope it helps you. My MO never suggests anything either. They pretend it's not even the tamoxifen in the first place.
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heartnsoul - Both meds helped me and like I said, the added bonus us good sleep most of the time. I have a much better attitude about things these days. Please let me know what your doctor does - if anything.
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Hi there ladies.
I don't often post here, but I read the forum often and learn a lot from you all. Whenever I have a question I come here and somone has already beaten me to it by querying the group and getting loads of responses. So thanks for all of that knowledge!
Recently I had a PET/CT scan that revealed that all the adenopathy in lymph nodes and lungs were resolved. The primary breast tumor continues to shrink, and there was even less uptake in the lesions in my lower spine. I am stage iv BC so the extent of my treatment thus far has been Tamoxifen and Xgeva shots to strengthen the bone. It never seemed like much: I take a little white pill every day at 6:00 pm. But Tamoxifen is a very powerful ally in our efforts to beat back or prevent this disease. Something I forget when I get a hot flash out of nowhere!
Since we all have our good and bad thoughts about Tamoxifen, I thought I'd post a link to my blog post "An Open Letter to Tamoxifen." I think you may enjoy it.
Cheers!
Scorchy0
