Hi gilfriends! I haven't been here in a while and I'm just reading some older posts to catch up a little. juneaubugg, I stopped taking Tamoxifen, also. I could put up with with the nightly leg cramps and the brain fog. Then last year my Achilles' tendon became painful and swollen. Long story short, I finally did PT. That didn't do much. I went to get x-rays and a boot. I was reading to see if other people had Achilles problems on Tamoxifen, and sure enough, they have. I took a three month break from Tamo and my tendon was feeling better and the swelling went way down. When I went back on it in Feb the pain and swelling came back. My Onc said, well, it would be an uncommon side effect of Tamo. (Meaning she didn't think it was the cause.) I've been bleeding since I've been on Tamo and have had two biopsies for cervical cancer already. Then in March I went in for my annual eye exam, knowing my right eye had gotten worse. Just one eye. I looked that up and some women have had issues with one eye getting worse on Tamo. Then, in May, I woke up at night with terrible URQ (upper right quadrant) pain in my abdomen. Went to the Dr the next day. She took labs and wanted a CT of my abdomen. Had that done. I have a cyst on my liver (probably been there since birth they say,) inflammation, and my liver enzymes were really elevated. They told me to stop drinking for 6 weeks (now they think I'm an alcoholic) and then recheck the labs. So, I start looking up causes for liver disease and what the hell!!! It's listed as a se of Tamoxifen!!! Since when ??? No one ever said anything to me about liver disease!!! So I stopped taking the Tamoxifen. Last Friday they reran labs and guess what? My labs are normal. So, now I'm calling Bullshit and I'm staying off Tamoxifen. I posted in a Tamoxifen SE discussion board, and one gal in Oregon has a doctor who checks her liver labs one month, three months, then every 6 months after starting Tamo to check for liver damage. Son of a bitch!! I have an appointment with my Onco on the 28th and I'm telling her I'm not going back on it. Oh, and of course I'm bleeding again since stopping so I need to get checked again for cervical cancer. No thank you. I have no confidence in it any longer. Funny, too, my hair is really shedding, but I assumed it was my Thyroid, Ha! Hope to be feeling better soon anyway. I'm glad you are!! So sorry about your BIL's dad. Hang in there. I'm saying prayers. Hugs to all!!
Swgee...I'm still on Tamoxifen, still see my MO every 4 months, and yes he runs blood every time, a CBC and Metabolic profile..My liver is fine, but I'm glad he continues to check...I've had uterine polyps, and a hip replacement...Tamoxifen who knows!
Hi there- nice to see these familiar names. Yes, it has been a while though I check in when something is troubling me or I am looking for info-it's been 4 years in august since my exchange surgery and I still haven't gotten areola tattoos or nipple reconstruction, just slap on my temporary tattoos that I order online. I was diagnosed Jan 18, 2012. It doesn't seem so long ago, though I find I have blocked a lot out, sort of like labor.
I just retired last month (age 61) from being an elementary school principal and am finding myself more relaxed and pursuing interests that had been backburnered for a long time. I occasionally get recurrence panics but try to let them go.
Hugs to all!
Just found this thread and so happy I did! I have been on tamoxifen for a little over 3 years and I hate it! Brain fog, weight gain (20 lbs) eye problems, and foot/achilles/calf problems which I'm seeing a dr for next week. At my 3 year check in I told him I didn't want to take it anymore and he scared the hell out of me so I'm still taking it. For the past 2 years my triglycerides have been off the chart too-488 as of last weeks test, I'm told this can also be a side effect of Tamoxifen. Now they want me to take another pill to deal with that. I can totally understand why people quit taking this *#@!. I read this article some months ago and it made me really think about "statistical terrorism" when I showed it to my Dr he got visibly uncomfortable. Hard to say if I'll take the full regimen but I'm really sick of this stuff and the onco is trying to tell me I should switch to AI and take for ten years. I responded very firmly that there is no way in hell I'm taking this for ten years. That being said I dont want to be foolish or reckless either.
Melody46, glad you checked in here and I understand the issues with the hormonals. I am on Anastrozole and am considering quitting after 5 years even with the evidence suggesting 10. But never say never is kind of my motto now~~quality of life versus life? And also mine was aggressive as you can see below and without the AI quite a high % of recurrence. Mostly all good now other than pesky osteoarthritis issues due to AI thus on Prolia~~yes, one drug to try to fix another just as you say! Keep us posted though many of are not so active here these days.
I am so glad that the Aromasin SEs settled down after about 3 years. At 2 years I didn't know if I could do 5, much less 10. I took all three AIS the first year and then was switched to Tamoxifen (better than nothing said MO though I am past menopause, plus have no ovaries now!!) SEs were the same. So I"ve now been on Aromasin about 2 yrs. And I felt better over time. Not 114 when I wake up in morning and go down stairs, not dreading getting out of bed, etc.
Have had 4 issues with 2 thumbs that required cortisone shots, and my PS said that he thinks it is AI related. Says he sees post-cancer women with such issues frequently. But I've got my fingers crossed. In August it will be 4 yrs on AIs so I still have a while before I make a decision. But with oncotyope 31 and K167 42, my tumor was on the nasty side.
Wow, time flies! I checked in today and realized it has been a few months since I last came here. I have caught up on all the check-ins and so good to hear from everyone.
Marianelizabeth- you asked about osteopenia vs Osteoporosis - I have osteoporosis. I wasn't offered Prolia, just the Zometa infusions.
Juneaubug - the elbow has settled down, apparently it could have been caused by the Zometa or it was suggested that it could be autoimmune flare up like rheumatoid arthritis. It went down about the first week of July and has continued to behave.
Ramols - hope you had a wonderful summer with your boys, they will be heading back to school.
I also am noticing hair thinning and it has gone straight on me also, I have always had thick, wavy hair so very different for me to try to work with.
Interesting discussion regarding the various anti-hormone pills and I respect the decisions to stop taking.
Lots to consider in making the decision.
Happy September ladies! Hard to belive that around this time four years ago I - and many of us - were heading into the unknown of chemo treatments. Had my checkup with my oncologist the other day and she graduated me to survivorship! Time flies! And to prove it - my boys have started third and first grade, and my little nephew is getting bar mitzvahed today. That's my happy right there. Here's to hoping everyone's aches and pains ease and that we all feel great! Hugs to all! Have a great Fall!
Hi Ramols. Your 'happy' sounds wonderful! I'm sure you made our day.
We have been living in the desert and loving it for a full 12 months. It's perfect.
My Cancer doctor appointments have all been good too. Pretty soon I go to one year appointments. They seem to be more thorough here. At my last appt Doctor ordered a CT scan. I thought that was excessive but did it anyway. It discovered I had a 4cm gall stone. Amazingly I wasn't feeling horrible until just before they took it out s few weeks ago. I don't think it will be missed. Plus, I should be able to eat all the foods I've been avoiding for years. The gall stone must have weighed 2 lbs because that's all I lost after that big surgery! At least the scale moved a little.
Five years in our awful pills is getting close too. This survivorship part is going to be great
Time does fly... 4 years ago today I found out I had Breast Cancer, 4 years later still NED, still taking Tamoxifen and besides a hip replacement and a endometrial polyp removed (not cancer) I'm doing quite well....Glad to hear you other ladies are doing well too...
Believe: I used to live in the desert too....LHC....HOT!
hi ladies... just dropping in to send love. I went back on my tamoxifen (after a year off) last week. I'm still well above my preferred weight and now it seems less likely I'll ever see 150 again. *sigh*
It's been 4 1/2 years since diagnosis....crazy. I hope you are all well!
I was at my bi annual appointment today with the MO and I thought I was going to be done in March .. 5 years on Tamoxifen .. But now I am going to go in Letrozol for 5 years. The studies show the increased benefits of 10 years on the drugs. I will stay on tamoxifen until end of April, talked May off and then start Letrozol in June. I am in the dumps because of this news. I am concerned about the side effects but did say I would give it a fair try
Joanne- I'm 4 years on Tamoxifen staying on it for 10 years, I am 55 and post menopausal but because of low bone density and previous hip replacement not switching to Femara or Arimidex...
Well headed to biopsy tomorrow. Initially I couldn't get an appointment with my surgeon until January 5. But when the nurse navigator called and they talked about how long I would be stewing about this he said he'd do the biopsy without seeing me first as he already knows me. I'm glad to not have to wait, but now I'm a bit terrified. In 10 days my life could change again. So don't want to do this a second time. Damn calcifications.
hello ladies - been a while eh? Just posted on the 2012 Sisters forum.
May not be on much, but think of you all often.
Want to wish you all Happy Christmas, Happy Hunakkah, Happy Holidays - whatever you celebrate (or even if you don't) enjoy and make wonderful memories.
Here's to 2017 - how far we have come.
All is well results B9. Hope everyone has a great Christmas. Here's to a health 2017. Kris
Kris, that's wonderful news. I know you have been in all of our prayers. We still hold out breaths for every unusual occurrence.
I'm doing just fine. Loving the desert.
Wishing you all a healthyvery Merry Christmas, Happy Hanauka and every holiday imaginable.
Thank you again 2 Fried for my Christmas goodies. I think of you especially at this time of year.
Aruba got another hand pay!!!! Way to go. She's my inspiration - always.
Hi there! Have not posted in a long time but want to pop in and wish you all a healthy, happy 2017!! I am doing fine and about to start my 3 month jaunt to FL to help care for Dad. He was up here in Cleveland for the summer and hope to bring him back up in Spring. Health wise all ok. Just saw radiologist since I was in that clinical trial with length of rads and her asst told me that at 5 year mark they (onc) should be sending in an original tumor sample to and rate dif characteristics to tell if I need to be on AI (arimidex)10 years etc. since it put me in osteo full blown they would weigh risk vs benefit. Sounds reasonable except at onc checkup a few weeks earlier, no one mentioned and was basically told another 5 years was in my future. Hmmm....read all the updates and think of you often. Hugs!
Happy holidays to all of you wonderful ladies! Here's to a fabulous 2017 coming our way - the 5 year survivorship mark for many of us! Woo hoo!!! Go find your happy in the new year ladies!
Kkuziel - yippee Happy Dance!
Happy New Year all,
I am up on tuesday to see onc ref coming off tamoxifen...due to hair loss....again😣 have been recalled after a chest xray showed up irregularities although i think this is due to chest infection i havent been able to shake. Feeling better now but have to retake xray in a couple of weeks.! Any suggestions on what drug I should be going on?? Dont much fancy none as 10 year studies all show better outcomes...thanks😊
Ireland...is it hair loss or thinning hair??? I'm staying on Tamoxifen for 10 years, not switching drugs because the others cause bone loss and I already have osteopenia in my hips and back and have had a hip replacement.
It is both thinning hair and hair loss....since last March I have lost about 50% of my hair and the remaining 50% is now extremely thin. I have been using viviscal to cover the patches but unfortunately here hasn't been a lot of regrowth. The general surgeon reckons it is a side effect and referred me back to onc to discuss coming off tamoxifen. All my bone density scans have come back normal. I am 5 years on tamoxifen in Feb so maybe it's time for a change.....will know better tomoro!!!!
And here I am again.....waiting on 2nd set of chest xrays and just been recalled to the clinic due to annual mammo showing up some irregularities that require further investigation. I am going for ultrasound and biopsy next Friday. Same boob!...anyone else experience this? I hope everyone is doing well but I am so fed up with this now......when does it stop.
Sounds like 2017 hasn't been easy so far for you, Ireland. They are so extra careful with us now - I hope that all turns out to be OK with both the chest x-rays and the US and biopsy. I will be thinking of you this week - waiting and wondering is definitely not fun.
I have found that Aromasin (Exemestane) has been pretty good to me, kinder than tamoxifen was.
Glad I checked in today - nice to see familiar names
oh Ireland! Just saw your post. Thoughts and positive prayers going your way.
I must be farther along than you. They did the Ct scan, ultrasound etc a few months back. No problems resulted except I discovered my gall bladder had to go. A few other findings but just things to watch.
I think websister is right. They keep a pretty close check on us. In your pockets. Waiting to get your good results and glad they are taking care and watching you!
Ireland I hope all is well with your results ... Keep us posted.
We sister I am finished in 2 months with Tamoxifen and then start 5 years with Letrozol. I like that you are saying you are doing better on the Aromosin then tamoxifen. ...
Keep checking in ...
Ireland, just went through this same thing in December. Found calcifications in the same breast as my cancer. Scheduled biopsy and I was pissed this time. Last time I was beside myself with worry, this time irritated. Because it was Christmas once again I got the same run around, delays, vacations, etc., but I spoke up and said waiting a month was unexceptible and they made things move. They got all four calcifications in the biopsy and thankfully this time it turn out to be okay, benign. Fat necrosis. But it does put me on a more frequent mammogram schedule for the bad boob of every six months. The biggest disappointment is how quickly we go back to that dark time in our lives. I was not prepared to go through all of those feelings agin. Hopefully this will prove to be a much better outcome than the first time.
After a heartstopping morning on Friday....Biopsy tesults came back good😊 I recieved results from 2nd xray and that too has come back clear. So happy happy days. I have a gp appointment tomoro to see about bleeding even tho ovaries were removed 4 years ago....Im thinking it is the change in medication....I came off tamoxifen about 3 weeks ago and straight onto the Aromoisin?? Anyone else experience this. Thanks for all your positive thoughts and feedback....hopefully 2017 will remain upbeat for us all. Big hugs to you all.xx
Ireland, great news!!! I've been praying overtime. I've been on arimidex since May 2012. No real side effects other than lousy appetite and haven't been able to lose an ounce. Sad, I should be skinny. I'm sure we are all celebrating with and for you!!!