Bottle o Tamoxifen
Comments
-
I am not sure I can attribute my horrible hot flashes to Tamoxifen, or if they are are a result of the chemo. Regardless, I have just had testosterone pellets inserted and hope this will help. I will keep you posted. My hot flashes have been fierce - dripping sweat, heart palipitations, sinking feeling. Truly dreadful. Also, I have had weight gain, fatigue and the fog. Read about this treatment option at hormonebalance.org. I will report back in a few weeks about my experience. Fingers crossed.0 -
Best wishes to you Stay! We all hope it works!0 -
I just found out on Friday that I'm going to have a salpingo-oophorectomy in November and obviously will need to stop Tamoxifen for surgery. Can anyone give me timeframe (how many days/weeks before and after)? My ONC told me once, but I don't remember what he said and am not sure I'll manage to get an appointment with him in time.0 -
Lahela, can you call onc's office and ask? Then you'll know exactly what the correct time frame is. Mine would have no problem (just his ditzy nurse forgets to return the call)0 -
The problem is that it's through the hospital, so I don't get to speak with anyone directly over the phone. It's times like this I wish I'd gone with a private onc. I'll try calling tomorrow and see if they can get a message to him about it.0 -
Hi Lahela
I think if you PM Jo1955, she would know the timeframe, however your doc. may have something diff. in mind, but it would give you and idea. I think I have heard 10 days before surgery from someone. Good luck.
0 -
lahela - I had a complete hysterectomy in Jul due to multiple uterine issues with Tamox. Also had some vaginal bleeding so I was off Tamox for about 4 weeks before my surgery and went back on it as soon as I got home from the hospital. To answer your question, 2 weeks before and 2 weeks after should be good. My MO told me that even being off Tamox for that long we are still protected.0 -
I started Tamoxifen 4 months ago after I had surgery to remove a polyp in my uterus. My ob/gyn also did D&C of my uterus. My period stopped 2 months ago but yesterday I had spotting. I thought it was my period but I am not bleeding any more. I asked my ob/gyn if I have spotting, should I notify him or not? he said since he did D&C recently, I should be checked one year later. Does this spotting happen to anybody else here? I used to have hot flashes for 2 months but this month it is not happening. Anyone else with similar experiences? Thank you.
0 -
I start rads on November 4th.
I phoned my MO today and (when she called back) I told her I want to go off Tamoxifen for the duration of rads. She insisted that I can continue.
I told her that I apologize for being stubborn and I know she is the doctor and knows more than me and Dr. Google but I felt very uncomfortable taking Tamoxifen when there are conflicting studies for its use during rads. Only when I mentioned not wanting to be going through some of the Tamoxifen side effects at the same time as rads did she soften and say OK - I can stop if its what I want and that it is a valid decision and doesn't present a problem.
So - she says after taking T for only a couple of weeks I can stop about 2 days before rads. I will take my last T on October 31 and hope for the best.
MO says I will have to wait a week to 10 days after rads before resuming Tamoxifen to make sure any changes (like rash etc. is from rads and not T).
I kind of feel that taking Tamoxifen during rads will be good for left boobie but bad for right boobie and stopping will be good for right boobie but bad for left boobie. Its like playing Russian Roulette.
0 -
If it makes you feel any better, my MO didn't even want me to start Tami until a month after rads - he felt it was important to separate out any SE's and know what was from which.0 -
Hi Annette47
I have been anxious up until now exactly because most people seem to do Tamoxifen after rads - I seemed to be one of only a few going to do them together.
Once I realized I preferred to gamble on lefty being unprotected for another 7 weeks vs righty being maybe/maybe not less sensitive to radiation killing any errant cancer cells (biopsy tract seeding fears loom large in my mind) it was easier to stand up to the MO.
Now I am a lot calmer.
I would also like to plan to do something special for when I finish rads. I haven't even started yet! I read about folks getting to "ring the bell" and it took me a while to understand what they were talking about. Then I thought it was really stupid and that I wouldn't want to do anything after last rads - just go home and have a good cry.
But I have been reading a bit on other threads and have gained some wisdom from other ladies - its important to do things you enjoy. So now I do want to plan something that I enjoy for after rads.
The only thing is that I have to figure out who I am and what I enjoy and what I want to do for fun.0 -
My last day of Rads I brought the staff a box of still warm apple fritters and DH and went to a special place for lunch afterwards.
0 -
I finished rads on a Friday - Dec 3, 2010 to be exact. There was no "bell" to ring. I was so glad to be finished and to not ever have to go back. I had a hellish experience with rads. My RO was the doctor from hell. Anyway, I went out to eat the DH and a group of friends to my favorite Chinese restaurant and that seemed to help a lot. I was surprised with gifts and a sort of mini celebration.0 -
On my last day of rads, my mom came from VT and took me to the rads appointment--the staff played me a song on kazoos to celebrate--and then we went out to lunch and went shopping. It was a happy day. I did hear from someone whose husband scheduled a cruise for the week after rads, and she was too tired to enjoy it, although by then he sort of needed it too. I never had that level of fatigue, but plenty of people do, so I wouldn't schedule anything too inflexible or ambitious. But rads was surprisingly easy for me (though 30 round trips an hour away) and I was quite capable of partying on my last day. I'm another one who didn't start Tamoxifen until a bit more than a month after rads was over. The protective effects of Tami stay in your system for at least a few weeks, I've heard, so you are not putting yourself at great risk by taking a break for rads. (But I'm not an MD.)0 -
My last day of internal rads they removed the balloon on the rads table, told me it would feel like a bandaide being tore off-- LIARS!! I had tears!! I hurt so bad.... I got up from the table, went to dressing room, got dressed- nurse had disappeared. she was supposed to give me some lotion as they felt I would burn inside out.( I never did). So I waited around and finally gave up on the nurse and got it from the desk clerk. I felt let down really. all done, no bell, no good wishes, nothing. POOF everyone left.
Found hubby and told him I am hurting( he said he could tell as I was very pale )- We went back to the studio we had stayed in that week. I took drugs- sat in recliner while hubby packed up the studio. I slept all the way home- got home slept til 8 pm- checked messages on phone, Had a text from my neice saying my big sister had tested positive for BC and was in a bad way.. I called her and tried to get her spirits up, Trying to stay upbeat myself but I was feeling rotten, she had no idea I was sick.. I got off the phone and started puking and puking and finally looked down and the wound where they took the internal balloon out had opened up- steri strips fell off. I went to the local ER at 1 am and ended up in the hosptital for 2 days..
When I reported all this to the RO he said he had not ever heard of it happening before . but that everyone is diff and my body probably just decided it had had enough. The local doctor had said pretty much the same thing.
My other sister tells me, if I didnt have bad luck, I wouldn't have any luck at all..
I was wondering.. Has anyone had Luperan shots as well as Tamixofen?0 -
Oh Man! I remember that myself! She said it would hurt for just a second, but OMG I thought I would pass out! I know the balloon was deflated, but I think it had grown inside there!
But I didn't have any trouble AFTER that like you did! I'm so sorry! You are right.... everyone is different! I just remember I was really tired, for about a week after, but nothing like the gals that get the standard radiation treatments.
Sorry, I don't really know what Luperan shots are! Take good care.0 -
ndgrrl - medical staff seem to have a habit of forgetting you! Could it be that you are a very sweet, quiet lady who doesn't make a fuss or scare people?
I think you had better develop a trait like a crazy look in your eyes or a feature that makes you more noticable and memorable! Something like a T-shirt saying "I'm ANGRY. Ask me why". Maybe dye your hair red!
I guarantee you no-one will forget you again.
On a serious note you have been through a lot and in a short time too. Very stressful!
My Mom sometimes tells me that "I am all worked up and need to relax". I think its going to take some time for you to stop being "worked up" after all that has happened.
I was thinking about it today - how can people help themselves overcome specific traumatic events? I don't just mean de-stressing by doing some exercise or some deep breathing (though that is always a good start).
I mean really let go of the memory of hurt and pain, both physical and mental?
I may have to pay someone to help me work out the answer to that question!
ndgrrl - I was trying to find something witty about good luck to say and I read this quote:
You know, Hobbes, some days even my lucky rocket ship underpants don't help.”
― Bill Watterson
Now I have learnt here what "big girl panties" are but I have never heard of "rocket ship underpants". It sounds though that if you wore a pair to your next medical encounter you might not be forgotten again.
What is Luperan for?
Hugs0 -
Bounce i took tamoxifen while doing rads this summer and other than having hot flashes on the rad table i was fine. I ran any where from 5 to 10 km everyday before my radiation. I was fine and lattered on the glaxol cream. i had chest wall and axilla and supra clavicular radiation0 -
Rdrunner - I have NEVER been able to run 5km in my life. Well done and thanks for the info.0 -
Luperon is a shot the surpresses the overies. I read that some people do that as well as take tamoxifen to reduce estrogen in their bodies for ER positive cancers.
Rocket undies- I need to get pair and if they forget me or lie to me again I can say POW RIGHT TO THE MOON!!
5 K run? wow that is impressive- I would be laid out on the sidewalk after about .5 K.
Chevy- why is it they lie to us about that pain- Why not say to take some pain meds before we get in there or numb it or something-I also felt it must have grown in there- The surgeon said the RO must have not have deflated it all the way... I am gonna warn my sister she started her internal rads today..
I go back to work on Monday- maybe that will help me get my mind off the past few months- NOT that its gonna be a pleasant place. I am already dreading that., But i miss the seniors- well most of them. The ones who lectured me about "not cutting them both off" I really do not miss that much.. I am sure I will have many more lectures to come...
So in my mind I will just have to sit and be in SOME BEACH- SOME WHERE!!
Thanks you all for being just who U are0 -
Bounce- I also did Tam and Rads at the same time . My MO at Dana Farber starts you on Tam right after surgery if you are not doing chemo. I had no problems at all.
Good luck with Rads.0 -
I have not had Lupron shots because my MO thought Tamoxifen would be enough for me, and she said Lupron's side effects can be harder to take. But I think others here have had it. I've also learned a bunch about ovarian suppression from the "Stage 1, grade 1, pre-menopausal" thread. Wait, I'll link it:
Hope that works.
I think it's criminal that they rip anything out of anyone's body without pain relief. It's awful that you ended up in the hospital, ndgrrl, but it sounds like the kind of thing that could certainly happen when you go treating people's bodies like a carrot patch. Anyway I hope it goes better for your sister. Maybe she can insist on a superficial pain relief shot. I had such a shot before a skin biopsy recently, and to my surprise, the biopsy one minute later was absolutely painless, couldn't even tell they'd done it. That's what your sister needs.
Bounce, I love the idea of cultivating a crazy look in the eye! That could come in handy in a whole lot of situations!0 -
Hmmmm, last day of Rads, I was totally exhausted, getting over bronchitis and working long days. I was surprised when I went into the Rads department and the techs who had worked with me came to give me a "graduation" certificate, and pin! LOL! They were a sweet group...so I brought a homemade Red Sox taggie for the lead tech's baby, and candies for the rest. I think I then went home and collapsed so I could get back to work in the morning. I will say that my RO tried hard to convince DH and me to at least have a getaway weekend during the rads process. Unfortunately we had a dying dog at the time, so just could not feel comfortable leaving town. But boy did my MO try hard! She was much wiser about self care than I!
MO had me start tamoxifen a month after completing rads....I was already really fatigued following rads, but then the "Tammi sleep robber" left me feeling like a total zombie daily, resulting in my decision to retire from a demanding job/career that I loved. Six months ago, MO referred me to the Strength in Movement program at the Cancer Center, and I have enjoyed the fitness program and trainer (a young bc survivor herself) a lot....but it has done very little to help my sleep issues. I daresay, I may be enjoying a bit more stamina over the last month, and am hoping it continues. I have started the CR melatonin and that seems to be helping me get through the night with less struggle. Thanks for the suggestion, RunFree!
Sending you all wishes for gentle treatments and high functioning rocket ship pants!0 -
Bounce: how do people overcome specific events that have had a horrific impact on your life? How does one let go of the memory of the physical and mental pain?
You can try using a therapist but it didn't help me and cost $150 a week for 3 months and now I know how I better could of used that money to make myself feel like I am getting back into my life again and relearning how to enjoy life. I would of gotten facials, massages, pedicures and had my hair cut and highlighted! I tried yoga and flunked.
For me, after finishing with rads, I was left with wondering if that was it and I would never see or hear the words 'you have BC again' but I just was afraid to let go and enjoy each day for what it was as I was enjoying my life and the day when I found the lump....and as you know, at that time your whole world crumples and for me being a nurse, all I could vision was months of painful surgery, chemo and having my husband, who is 20 years older than me and my 16 year old son watch me die.
Well, getting mad served me well. I was mad that bc took so much time out of my life and left me with uncertainty about my future. I didn't care about all the past pain from the DM and reconstruction, nor the chemo and losing my hair, or for that matter losing my breasts, but I was mad for how it upset my son and husband and robbed me of precious days when I could of been enjoying life and didn't.
Keeping busy is good for me. I always make a list the night before of things to do the next day. If I do none of them, then that's fine and if I can cross something off the list, even better.
I exercise on a treadmill. 5 - 10 k per day, 6 days a week. Had to start off walking after being a triathlete before bc as I was so out of shape.
I lost a lot of weight so finally gave my larger clothes away to a girlfriend who had just lost weight and was into that size and slowly bought me things.
I still though was thinking of of BC every day. I finally mentioned this to my GP and she confined she had BC 20 years ago and thought it took her 2 - 3 years to stop thinking of BC every day. She also prescribed a low dose anti-anxiety medication for me and within three days, I felt the weight lifting from my shoulders and I wasn't crying all the time. Within a few months I really only thought of BC maybe twice a week.
Then earlier this year I found out about the mets and I got really mad. My GP doubled my anti-anxiety medication and I then was determined that BC was not going to take one more minute from me and I was going to live and enjoy my life until I physically couldn't. Luckily, my lung mets are tiny and Tamoxifen has kept them to now the way they were when we discovered them in January and my tumour count has gone from 80 to 30.
YOU have to make a conscious decision that BC has robbed you of time and part of your body, scared you and your family.
But NOW is your time to live and enjoy life. If I now have thoughts of my mets, I let myself think about them and then let it go. They don't bother me, so why should I give them my valuable time and energy.
Bounce - don't let BC take any more from you. The aftermath of BC is like having PTSD, which tells you to face your fear, get mad, and acknowledge it is in the past. And now is the present.
I do think my anti-anxiety pills help me. Just a hint.....
And women say 'when will my life get back to like it was before bc? Answer - never. You need to become and new and stronger you and live to love each day.
Sorry this is so long.0 -
Justagirl, I'm glad your post was so long because every word of it is helpful to me. It is extremely helpful to hear that it might be two or three years before I stop thinking about BC every day, though I hope it will be less. Because of the skin troubles I'm having, probably from Tamoxifen, I can't move forward and I still feel like a cancer patient. The derm troubles are much harder physically than anything I went through during my actual BC treatment, though if I'd had chemo I suspect it would be different. You are doing such a great job managing your mets, I mean psychologically. I will keep the anti-anxiety medicine in mind in case I feel I need it. Thank you so much for your honesty and thoughtfulness.
Lacey, I'm glad the CR melatonin seems to be helpful. It's working fairly well for me too, although I rotate it with Ambien and Zyrtec (to counter the itch).0 -
Aah Ladies - A strange question but here goes anyway.
Has anyone noticed if their breasts got smaller after being on Tamoxifen?
I don't mean a huge difference but enough to notice. My old stretch marks look different - like they aren't being pulled. And its on both sides so isn't just healing from surgery.
Not a complaint - just curious if this is a possibility.0 -
Interesting question, Bounce, but I don't have the answer. I've just noticed in the last week that bras suddenly aren't fitting very well. My revision was almost 4 months ago, started Tami in August. Will be seeing PS next week and I'll ask her then.0 -
Bounce... I think MY left side IS much smaller.... where I had the Lumpectomy.... It just makes sense, when they take out any tissue, and the nodes, etc. Anyway when I fasten my front-closure bra, the "middle" is way over to the right... I guess it doesn't matter....Ha!
Actually my breasts are what you might say..... "longer".... But at my age, I would look pretty silly with cute perky little boobs.... Although it WOULD be nice...0 -
justagirl - Thanks for posting. It was long but like RunFree said, there was a lot of good information there.
I had my lumpectomy and rads the latter part of 2010. Tami has caused all sorts of uterine problems for me over the past 3 summers. Seemed like if it wasn't one thing, it was another. Had recon surgery in 2012. A hysterectomy in July 2013. With many other procedures and such in between. What I am trying to say is, with every thing that has happened, every obstacle I have faced, I do not find myself thinking of BC everyday, In fact, some days, it is the last thing on my mind. I don't have those sleepless nights thinking about it or the tearful days. Some how I have managed to get past all that and move on with life.
It does take time but it can be done. We all can move past this and one day find ourselves in a much better place with all this. What does it take to get there? Each one of us is different - we all have to find that one thing or two that will redirect our attention. For me, I focused on work and making/designing quilts. When I sew, all my attention has to be on the project at hand.0 -
Hey Chevyboy
"longer" you say? I sometimes wonder if my boobs are looking for my knees!
Gravity is not my friend!0
