Bottle o Tamoxifen
Comments
-
I'm sorry your having a tough time of it, Jo. It's true.....just when you think all is going pretty well, something else pops up. Very frustrating. It's probably happened to every one of us at some point or another. As for coming off the tami, my MO has taken me off it for as long as month one time, to see if the SE's went away. They did, and when I went back on it, I developed different SE's. Yay. Hope your feeling better soon. Fingers crossed for good MRI results!
Hugs,
Sandi
0 -
Jules, I went off tammi in late Feb or early March (had taken it for 6-8 weeks). Recurrence was in July, biopsy showed Er+/Pr-, and it was in the same location as initial, so that is why it was recurrence and not second cancer. I started back on tammi immediately in Aug. when it was confirmed Er+. I told the MO I was starting slowly and building up - she knows how difficult and headstrong or stubborn I can be, so she was just happy I was agreeing to take it at all! And she asks me every time she sees me if I am still taking it, so she is happy enough for now. Sure glad I could make SOMEONE happy!!
0 -
Linda - I understand that going off the Tammi is a crap shoot. So sorry you had to deal with a recurrance. I did not ask my MO and am not going to. He would probably talk me into staying on it and I really have to see if the tammi is causing part of my joint/muscle pain.
Sandi - Part of the reason for the MRI is for a possible future consult with a PS. I did have a lumpectomy and there is such a difference in the size of my breasts, I would like to be "evened out." I am not really sure at this point what I am going to do but it will be nice to have my options.
0 -
Just wondering, how do they know when a person goes off Tamoxifen and the cancer returns, is it because of going off of Tamoxifen or did it just return.
Same for taking Tamoxifen, did the cancer not come back because of taking Tamoxifen or did it just not come back?
I have a friend that had two cancers and believes in the Gerson Therapy, she had the cancer removed, then juiced and followed the Gerson Therapy, no Tamoxifen, the cancer has not come back for 31 years. So is it the Tamox or is it just that the cancer did not come back?
0 -
Vickilf- I also wonder the same thing and if I were to go off it which I am contemplating big time, would it come back cause I was not on it, or just because.....I hate to play these head games and I have been having major problems like planter fasciitis and have been researching this some and have found many women to have had it at some time during their treatment. It is funny how you can google just about anything and all this stuff pops up.
Jo my dear friend, I hate to hear you this way cause you never complain and yes it is okay to vent to us, I just feel so bad that you are not doing well. I agree and think I just might join you in going off the little white pill for awhile. I just had this conversation with my hubby last night as I wonder would I have developed this foot problem or is this just a result of the pill which every and any Doctor I ask will tell me no. I am so tired of doctors now my foot Doctor wants me to learn to walk all over again and he said it could take up to 6 years to get rid of my planter fasciitis.....so I hear when you say you are frustrated about the joint pain as I too am frustrated just about everything. I am only freaking 46 and feel so much older since this pill. Jo hugs and we will be there with you every step of the way!!!!
Okay now onto another embarrassing subject.......my face was on fire for both my kids games this morning. I was told by another woman there this is a menopausal symptom. I know we are supposed to get hot flashes, but my skin was so red, you would have thought I got cooked from being outside all day in the hot sun. Has this happened to anyone?
This is why I love you gals and this thread, we can vent just about anything and everything.....love to you all!
0 -
Hi Ladies,
Jo, I'm sorry to hear about your issues. I can't take any of those other drugs to counteract the SE's. I'm allergic to most pain and nerve medicines. I hope it helps you to get past this.
Jules, sounds like your doc had you on the same plan as me. Tamox 2 years, discuss moving to AI. I'm not "officially" menopause, though it appears most of the symptoms of regular periods have disappeared. I wonder if the inbetweeners (peri to menapause or chemically induced menapause) have more SE's? Perhaps but who knows. We are all so different.
Linda, I'm sorry you had a recurrence but I have to believe it would have happened, Tamox or not. Those cancer cells are very sneaky, hiding in places that can't be seen. I pray your experience on it improves and we can all celebrate our anniversaries together.
Maria, your post is optimistic. It helps to see some positive news. I hadn't thought about the eye issues but will keep that in mind when I go for my yearly eye exam.
Sandi, I'm sorry you got new SE's...what a pain the butt. Maybe if we start and stop enough times, all of the SE's will have run their course? There's a thought.
Sounds like everyone is in the same boat. Do I live with the SE's or not? Does Tamox really work? The Drs and research tell us it does but if you dig deeper you find more confusing data. When I started on 11/11/11, I said I would give it six months and see how it went. I was optimistic at the time and on board to fight this darn disease no matter how I fel.. Now, almost two months later, I'm overwhelmed by the SE's (hives over torso, extreme fatigue, yeast infection that won't go away, thrush in my mouth, mood swings like crazy, nail splitting and dry skin). I thought that these were part of the cycle and would go away over time. I called my Onc yesterday and let her know what has been going on and she was surprised I hadn't called her sooner. She told me to go off until I see her in February and we will discuss what to do.
Of course, now I'm scared to stop....what if???? I'm sure 30-40 days won't make a difference scientifically, but emotionally, now I'm not doing anything to prevent the BC from coming back. I will continue to do the other things I started since surgery, eating healthy, exercising, trying to find joy in each day and praying on my knees.
I am hopeful that if the Onc recommends starting back on Tamox in Feb, that the SE's will be lessened.
Sorry for the long winded message.
Deborah
0 -
Just wondering, how do they know when a person goes off Tamoxifen and the cancer returns, is it because of going off of Tamoxifen or did it just return.
Same for taking Tamoxifen, did the cancer not come back because of taking Tamoxifen or did it just not come back?
There's really no way of knowing either way. The one exception would be that if were taking Tamox and got a new cancer, it could be tested for ER+. If the new cancer was not ER+, you'd know that the Tamox would not have made a difference one way or the other.
Other than that, it's a complete crap shoot. I think that's the main reason so many women stop taking it even if the SEs aren't too terrible -- it only LESSENS one's risk, rather than eliminating it, and whatever happens to you in the future you don't know what impact Tamox had or would have had.
I sometimes read comments here like "I took Tamox and I haven't had a recurrance so it worked for me." Well, that's not true. It might have kept you from getting a recurrance. But maybe you wouldn't have gotten a recurrence anyway. There's simply no way of knowing.
In my cynical moments I wonder if Wishing and Hoping is just as good....
0 -
Vickif and Deborah, I think your reflections on those sneaky cancer cells and tamoxifenn are right on target. Maybe I would have had a recurrence even if I had been on the tamoxifen. Then again, if I was on the tamoxifen and it came back it might have been resistant to the tamoxifen. (and it still might be). The numbers they give us as "benefits" for each treatment are based on populations, so there is no way to know for each individual whether or not the treatment will work. I know in my heart I have done MORE than I was able to do to survive, so all I can do now is hope for the best, but try to enjoy each day as it comes. I will stay on the tamoxifen for as long as I can, but if the SEs affect my quality of life so that I am unable to enjoy it, I will go off it again and hope for the best.
June, I was getting a very red face (major flushing) with HFs early on, but after about 6 months or so that has just turned into drenching sweats without the red face. So now at least it is not quite as obvious I am having a HF. I am wondering if the Buddhists had menopause in mind when they said the only sure thing is that everything changes!
0 -
What I was told is that for any one person, they don't know if tx will work or not. And even if you don't get a recurrence after tx, it's possible you wouldn't have even without tx. However, through studies, they can say how much you can reduce your chances of recurrence. These drugs really do save lives. Lots of women decide that their risk of recurrence is small and the drugs are not worth reducing the risk. I think it's a good thing to think about, especially if you gave it a try and are experiencing side effects. I do think it's prudent to discuss it with your onc and see what alternatives there are. I am not talking about you Jo. If I were on it for a few years and was having QOL issues, I would do the same thing and stop and see if they got better and then have a talk with the onc about it. It's a tough thing, especially when you think the worst side effects (uterine cancer and blood clots) could show up at any time. I'm putting a lot of faith in statistics. I hope they'll be on my side.
0 -
June - Sounds like we are on the same page. Somehow I have to find out what is causing this much pain - the Tamox - my arthritis - and mixed in with all of that - the nerve pain. On the latter, I have an appt with my pain doctor on Tues afternoon. Perhaps it will be a matter of adjusting the dose or trying another medication. Either way, I will need to be on something for life - don't know if he can do a nerve block or not since it is in more than one area. The only way to know how much the Tamox is involved is to go off it for about a month and see.
Kay - Should I have talked to my MO before doing this - yes but not going to., I don't see him again until June and I know if I have any issues all I have to do is call. We never know if going off the drug will result in a new primary or a recurrance. This whole thing is such a crap shoot. I am not worried and am not going to lose any sleep. If you think about it, we will have to stop the drug at some point and then what????
0 -
Had to come back and post on my very favorite thread since this is post 6,000. Never knew I had that much to say - LOL! In celebration - I thought I would bring some chocolate.
0 -
You gals have been busy today. Went and started acupuncture today. First for my breast pain and then for my neck pain. Therapist said I needed alot of work.haha. After reading everything today I had a thought what if all my neck pain is tamoxifen induced. What if I have this MRI on Monday and it comes back nothing. That would be something wouldn't it???
Jo I don't blame you for going off the tamox and see what happens then you have something concrete to talk to your MO about.
Deborah hope your MO can figure something out for you.
0 -
Sherry have you ever done the acupuncture before, how did it feel? Ouch is all I can think of!!
JO that is such a good point you made. I know we all have to stop at some point. Have you been told you are going to have to do 10 years? I know I was told 5 with Tamox and then maybe another 5 with something else.....6000 post girlfriend, who would have thought, ha ha love ya.
Linda was yours caused by the pill or just plain ole menopause? At the end of April it will be 2 years behind me on the Tamox and I find it hard to believe its from that, but maybe it is. I seem to be having some late SE......go figure.
0 -
JUne this was my first time for acupuncture. It really did not hurt. There were a couple of needles that I felt but the others I did not even feel. I don't see much difference but from what I understand it is cumulative on chronic issue. If you are having nasle congestion they can help that in one visit. But with all my old stuff she said it would take a while for me. My DIL has done it that is what she pretty much told me she has done. Had to go for awhile. I am to do 2 times a week for two weeks then weekly for 6 weeks and then we will see. She said I may need more. It is suppose to help your body heal. She said the radiation does a number on your body and takes awhile for the acupuncture to help it.
0 -
Sherry it seems like such a process, but here is to hoping something can help you. Fingers crossed.
0 -
June - As far as I know, I will do the 5 years of Tamox and then done. I tried 2 of the AIs and had to stop those - Arimidex lasted 3 weeks and Femara lasted 1 week. The Arimidex was before rads and Femara right after. With the experience I had on those, I would not be willing to try them again. I have been post menopausal since Jan 2008 so I was beginning to believe I was running out of options as far as hormonal therapy was concerned.
Sherry - I sure hope the acupuncture works - yes, it does take some time. You, girlfriend have had more than your share of pain and things go wrong. You really deserve a break.
0 -
Hi, Ladies,
I have not been able to write in a while, and I caught up with the last few days and wow, you snooze, you lose! Sorry so much has been going on, sorry so much pain. I really hope we can all have some resolution to all of this one way or another, or perhaps just learn some good coping ideas.
I'm leaving to the US day after tomorrow to spend a month with my parents while my Dad undergoes treatment for leukemia. Not easy, and I'm eager to be there, helping them, already. On the other hand, I'm going a bit nuts here trying to put work and kids in order while I'm gone. Luckily I'll be able to be on top of my work, virtually. Not so with the house and kids! If they eat pizza for thirty days in a row, I guess they'll survive, but I've tried to micromanage and freeze some healthy food (HAH! which will probably still be in the freezer when I get back!) DH is great, but he'll be in heaven, eating pizza for 30 days with them. Oh well.
Went to my MO for my six mo checkup today, first time since the ooph. I was wondering what she'd say regarding staying on tamoxifen or not. She says I'll stay on it for another year, then switch to an AI. Then I'll have been on tamoxifen for 2.5 years which she says is the right thing to do in my case. Honestly, I'm glad I don't have to switch off of tamoxifen right away as I don't need any upheaval in my life right now, especially while traveling. I mentioned the flu-like achiness I get each night since the ooph and she said that it's probably a combination of the tamoxifen and the lower hormone levels, but nothing dangerous. Ibuprofen each night before bed seems to help and she's ok with that. Zometa infusions every six months for three years, too. Otherwise all good. Just grateful for this and wishing everyone good health.
Love, Shari
0 -
Belatedly been doing some reading up tamoxifen inspired by some posts on here...and have clarified for myself at least the reason a limit of 5 years on tamoxifen( very good question) ..and it is because it is an agonist for endemetrial cancer ie tamoxifen is carcinogenic for this kind of cancer...so basically they have decided that the potential protection of tamoxifen( binding with estrogen in breast cells and so preventing breast cancer) is outweighed around the point of 5 years by the risk of taking tamoxifen and getting endemetrial cancer
now i have another question...why give tamoxifen to women who have had bilateral mastectomies and who had no node involvment? isnt that overkill? there are no breast cells left and all indicators are that cancer did not spread? i realise there can be tiny amount of breast cells left on chest wall..and possiblity of blood...but, given risks and SE of tamoxifen? I am leery of 'current protocols' for any cancer( which can suddenly change wiht next study) cos i do think some oncologists just hide behind them ie it takes guts to go against the current and say this really is not necessary for you , because easier to deal with you getting serious side effect from tamoxifen( ie they were just following the current protocol) than you having a recurrence and then they could be seen as negligent in not prescribing....just thinking out loud on a sunday morning
0 -
also, to clarify...i THINK, but am not sure..that the use of the term recurrence has been confusing to some on here...
i THINK when they are talking about prevention of recurrence of breast cancer with tamoxifen they are not just talking about preventing cancer returing from original cancer...cos i did read that it can prevent in contralateral breast and i do know that any cancer in other breast is an independent cancer...it may still have the same receptor status but breast cancer does NOT spread from one breast to the other...and also just how tamoxifen works ie binding to the estrogen receptors on breast cells- that has got to work for all breast cells
what i am wondering now is if breast cancer has spread via lymph or blood..is it still breast cancer , but in bone or liver whatever...i think so, but not sure
0 -
Yes, if the BC shows up in bones or an organ, it is still breast cancer. They can test the cells to see if there is any question. My coworker had BC, it was caught early, no lymph node involvement or anything. She had a pet scan after tx and her lung lit up. She had surgery to remove the cancer from her lung. The biopsy showed in her case, it was lung cancer there, not metastasis from the BC. Good news relatively for her. Regarding taking tamoxifen with no node involvement and bimx, I am not sure. It would seem there was very little likelihood that the cancer had spread or was any left in the breast. This would have to be balanced against the risks from the medication itself. If I were in that situation, I would have a lot of questions about it. Maybe someone here was in that situation and knows. I know mx can remove the recommendation for rads, but I have not heard it can remove the recommendation for hormonals.
0 -
My understanding since I asked my MO this question... the Tamoxifen also protects against metastasis... If a cancer cell had escaped, not landing in the nodes, was missed by chemo and just floating around out there, AND hungry for estrogen, the Tamoxifen starves that cell. The five years on Tamoxifen or some hormonal drug ensures that all of those rogue cells have suffocated theoretically. Since I am 98% ER+ I guess I have no choice but to endure the SE which seem to include now:
- dry eyes
- dehydration
- achiness
- vertigo
0 -
Hi Ladies! I have been taking tamoxifen since 12/19/2011 and Efffexor since 7/1/2011, but I still have hot flashes and night sweats. Wonder how much Effexor are you taking and if its working? Thank you!
0 -
Jo- I'm so sorry that you're having problems with pain. It's true that the unexpected is now the expected. It is frustrating. I will be thinking of you and sending good vibes your way.
0 -
Ceeztheday - Thanks! It is so very frustrating especially this time of year when I am at my busiest. It is no easy task dealing with Winter Texans but without them I would not have a job.
0 -
Tomorrow I go for my neck MRI. Kinda nervous.
0 -
Good luck, sherry. Hope you have big pockets. With you.
0 -
Shari--I'll be sure to have extra pockets on tomorrow. But you gals better behave. You know how tink likes to misbehave and drink and fly.haha
0 -
Jo So sorry you are having such pain. I hope it resolves soon!! please keep us posted... lots of hugs to you!
Sherry we will be with you today all snug as a bug in your pocket
me??? misbehave????? lol maybe a little hugsWell my DD is sick again. They ran blood work last week and said she had an imlfammed thyroid prob due to a virus then on fri they ran more blood work the doc think she also may have a reoccurance of mono. She had it several years ago he said it isnt common but it is possible and she has all the symptoms including a bit of an elarged spleen soooooo we will see.
Hope everyone has a happy monday!
Maria
0 -
Sherry, jumping in your pocket and will be on my very best behavior. If I have to, I'll keep the others in line too. Hope you get answers and relief soon. ((( hugs)))
Tink, I am so sorry your DD isn't feeling well. I hope she is back to her old self soon.0 -
Sherry we will be there with you and since Kay is going to watch Tink, I don't think you have anything to worry about.....ha ha. Seriously, will be thinking about you and check in as soon as you can so we know how things turn out....
Off to PT again, lets see what they teach me today....fingers crossed ladies as I am getting so ticked off about not being able to do the simplest things. Hugs!
0
