Bottle o Tamoxifen
Comments
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lonnie713--- I'd love to know how you're doing after your hysterectomy. My docs are recommending I have one as well including ovary removal because the Tamoxifen has caused thickened lining, enlarged uterus, fibroids and ovarian cysts. I don't mind having to lose my parts but I'm deathly afraid of surgical menopause!! I hear it can be horrible. I'm almost 51 and my docs are saying I'm probably pretty well into it anyway so it won't be that bad, but I'm not one to believe everything a doctor tells me! Just wondering what type you had and how the after affects are so far. Hope your recovery is going well.
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Jennifer, thanks for responding .That's what I was afraid of.I can handle it so far.It comes and goes.Not severe.But the alternative of not being on anything and getting Cancer again.I'm only 44 yr old.
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I have been on the Watson brand for 3 months doing good I thought , mild warm ups itchy prickly skin, sore knees getting up and down some mild spotting ( like starting a period kinda but never actually start ) so I refilled my prescription and got irritated when I realized they switched me to the teva brand without telling me. Well I have no prickly skin, no warm ups and so far no spotting !! My knees are better too but I also been running a lot and they started to feel better before the switch !! Of course it could be my body adjusting and have nothing to do with the switch ....either way I'm happy !!
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josie, there are many other hormone therapy options other than Tamoxifen. If you go to this same website's home, treatments, hormone therapy, and side effects you will find a chart with the different options and its side effects.
My MO changed me to Fareston and I should start with it this week.
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lala1, Just to give you some back ground info on me, I've had 2 myomectomies done via abdominal incision and one UAE in the past. All to remove fibroids and treat endometriosis. This time around I also opted for the abdominal incision. My doctor wanted to do it vaginal but my gut kept saying no. He left it up to me and Thankfully we did it abdominally . My doctor said that the surgery was very difficult because my uterus was matted to my stomach and bladder from the previous surgeries. He said there was No way he would have been able to do it vaginally and would have had to stop and cut me anyway. He removed the uterus, ovaries and cervix. What was supposed to be a 2 day hospital stay turned into 4. My hemoglobin dropped and I had a blood transfusion. They thought I had a bleeder. After a ct scan ( they found cysts on my spleen) and an ultra sound, they saw no bleeding...thankfully.
My circumstance is not the norm. My husband and I were trying desperately to have children...to no avail. They recommended a hysto yrs ago but I refused. When I was diagnosed with BC my breast surgeon was more concerned with how my uterus looked on the pet scan than my breast. It was filled with tumors. She could not believe that I had two surgeries.
I am two weeks out and feeling ok, still lightheaded and woozy but I think it's related to the blood thinner that I'm taking daily. I can't do much of anything yet. I'm walking upright finally..lol. My insides feel like something is "pulling". Not gonna lie, the first few days are very painful. I have my f/u tmrw with the doctor, will see what he says. I hope this didn't scare you, again my circumstance was different due to my previous history.
I am having hot flashes, not as bad as when I was on the tamoxifen though. I still can't sleep, no change there. I start the aromasin tonight hoping that I sleep through the affects. I will definitely keep you posted.
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lonnie713---thanks for all the info. It helps! The Tamoxifen gives me joint pain, dizziness, warm flushes, sporadic periods, some nausea, etc but one thing I haven't had is a full on hot flash. I think that's the one that scares me the most! So far, I can deal with what that little white pill has thrown at me, although I'm having a real problem with the dizziness. I'm restarting my massages and looking into acupuncture to see if it will help. But I'm not sure I'm ready for the reality of surgical menopause!!
And I don't know what other things you take but I will say, at one point I begged to get off Tamoxifen cause my joints/muscles hurt so much at night that I would sleep about 4 hours. A holistic doctor put me on Gaia brand turmeric and regular ginger (up to 3 500mg pills of each a day though I only do one of each) and I take 2 SlowMag magnesium tablets in the morning and one at night. I also take 0.3mg of melatonin which I get from Amazon. I will tell you that I get a pretty solid 8 hours of good sleep at night! Every once in a while, might get 6 or 7 but for the most part, I feel good. I recently started taking another pill of ginger at night and have to say my dizziness has improved! Is it the supplements or something else? Hard to say but at this point I'll take whatever works!
Thanks again for your story.
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I need to try the tumeric, ginger and the melatonin. I've been hearing good things about them.
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Don't shoot the messenger here, but I had my follow-up appointment with my MO yesterday, and I asked him specifically if changing the maker of tamoxifen changed the side effects. He gave me a resounding NO. He said in some drugs, such as coumadin, that may be the case, but the chemical makeup of tamoxifen doesn't apply to this. I'm just relaying what HE said.
I told him I am having major hot flashes and am having trouble sleeping, he said he could prescribe an anti-depressant (I'm sorry I forget the name of it). He said obviously you don't need it for depression, but it does help with the hot flashes. I opted to wait it out to see if things get better. I don't want to take more pills with even more side effects if I don't have to.
He also asked if I was having leg pain, I said the first 3 weeks I was, but that has subsided for me. He said muscle cramps, especially in the legs, are a typical side effect also.
He asked about my appetite, and I am not one of the lucky ones to be losing weight, I'm on the other end of things and gaining, and seem to be hungry all the time. I've also been trying to kick the habit, which he blames more on the weight gain than anything.
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And my MO told me that my periodic dizziness, nausea, headache, etc was NOT due to Tamoxifen. He says Tamoxifen causes muscle and joint pain and slight chance of endometrial cancer and blood clots. He ways it doesn't cause all this other stuff. I say join BC.org and you'll see just how wrong you are!! I really like all my docs but sometimes they are just blind to our realities!
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I never had a male ob/gyn as I thought how could they possibly know what it was like to be pregnant etc. Sometimes when I read the posts of frostecat and lala1 I think the same thing about MO's. They aren't on these drugs haven't walked our path, so don't tell us these side effects aren't happening.
And different brands can cause some different issues, it is the fillers that go into them that change things up a bit and each person can react different too. Generic medications are allowed to have different inactive ingredients from the brand name medication. This can include fillers, dyes or other ingredients. This can cause problems with certain allergies or sensitivities. This is a big one for people who experience nausea, fatigue. I think there are about 6 different mfg for Tamoxifen, so if you suddenly start feeling different see if the mfg is different.
I'm only 2 1/2 weeks into the first month on Teva and really no SE's at all. Felt a little warm this morning, but no sweats, etc.
I'm on a thyroid drug Tirosint, was prescribed it in TX and live in AZ now. It is not a well known drug here and I have to be on auto-refill or the pharmacy never has it. It is dye and filler free it is a gel tab. I did horrible on synthroid.0 -
Hi ladies. I haven't started Tamox yet but reading to get ideas on side effects. Have any of you had your ovaries suppressed along with Tamox? I was just wondering if it will increase the side effects. Thanks!
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I too have my bottle of Tamoxifen but have yet to take it. I am waiting until I have some blood work for thyroid and a bone density test. I thought they may be a good idea to have those before taking it in case I have any major SE's. Here it sounds like a much higher possibility than what my MO said. I was wondering too if age and menopausal, pre or post changes the side effects? Thanks!
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ok, so for the last week I have been trying to get the Mylan brand tamoxifen, CVS, Walgreens, and even a private pharmcy still can't get it. Apparently in my area the wholesaler is McKesson and they have not contacted Mylan to set up purchasing. I even called McKesson myself only to be told they don't speak to individuals only companies. It's a damn shame we get the drug companies to listen to us only to have wholesaler dictate what we can buy. So frustrating!!!!
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oh, that sucks, Ms Trouble! I am so sorry you can't get it yet. I haven't contacted my MO to see about a switch yet.
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I met with my MO today and she understands why I want to quit tamoxifen. She said that it is her job to present me with the best available options but I have to make the decisions. By losing weight I've reduced my risk of recurrence from 15% to 10%. Tamoxifen would have reduced it to about 6%. But I just can't tolerate the SEs any longer. Now I don't have to see her again for six months. In that time I hope to lose the anxiety, the insomnia and the reflux, plus the associated meds I take for those things. The macular degeneration is here for good but maybe I can slow the advancement of it. I am a bit concerned not to be taking a hormonal but more relieved. Already tried Aromasin and that didn't work out either. The other AIs aren't recommended by her for me.
I am so glad that tamoxifen works for most people, or that they can make it work but it didn't work for me.
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Corky, it sounds like you made an important, good decision for you. And I'm glad that your MO was supportive of you deciding what was best for your quality of life.
In March, when I decided to take a longer Tamox break (after two years on it with many side effects) than she and I initially agreed on, I was a bit concerned that when I saw her in June, she might try to persuade me to stick it out. Well, what she said instead was, "You've given it a long try and clearly, given all the side effects, you are too sensitive to this, so I understand why you want to stop. This is not the drug for you". She said I could stay off anything until our next appt (oct) at which time she would like me to at least consider trying an AI. We had avoided those since I have joint pain and pretty bad osteoarthritis in my hands. I actually dread the thought of doing any kind of "hormonal manipulation" again, so not sure what I will decide. I'd like to learn more about Fareston (sp?) if people find that it has a better SE track record.
I have also lost a considerable amount of weight, (35lbs) and work out daily, but I am not sure how that factors into my recurrence percentage. My onco type % was a 4, so I feel like it is not totally crazy to take the risk. Whoooooo knows???
Best of luck to you going foward, Corky!
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Thanks, Lacey12. Sometimes this decision feels very, very lonely so I appreciate your support. I don't see your DX or TX but it sounds like we're on a similar path.
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It is a total crapshoot! I'm 47, eat right, exercise, have a low BMI, did all those things they say prevent it, I got it. Mine was DCIS as some say not a big deal, but it was grade 3, and my margins are only 1mm and it was on the left side near the chest wall. Another weird thing I was strong ER+, but weakly PR+ on one and negative on the next. Someone said recently if I had Stage 1, etc. and had oncotype I would probably have a higher score due to the lopsided ER PR. Oncologist said those are usually more balanced than that. No family history, I was/am the lucky one.
I'm a pro at surgery, so I wasn't afraid of that, radiation scared me but I ended up doing fine and did 7 weeks. I did radiation because of my age and that my margins were so small and it was near my chest wall. Tamoxifen scared the CR&P out of me, and I'm usually sensitive to drugs. So far, nothing really to report. I'm only almost 3 weeks in, and am waiting for the other foot to drop, but am remaining hopeful. I can honestly say if I had major SE's I would have a hard time continuing with it.
It is a truly personal decision and many factors to weigh. I still have young kids and don't want to deal with this again. A chapter in my life that made me grow as a person and change my perspective, but one I want to close.
Everyone needs to do what is best for them and their circumstances.
Corky60, I'm glad you are a peace with your decision.0 -
mom - you spoke my words exactly - "total crapshoot". I on the other hand eat fairly decent, but am a little overweight, don't exercise very often, enjoy cocktails and smoke occasionally (usually when having a cocktail) and have family history. Am I the perfect candidate for BC, probably, but how does that explain so many others like you who are not?
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mom my tumor was ER+ pr- and my Oncotype was 41. Ugh. You are lucky. I'm on tamoxifen now.
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I'm Er+ Pr- high score and on Tamoxifen too.......
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Lora. Did you decided not to do chemo?
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Yes, just Tamoxifen.
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Hi Ladies,
I just posted this on another thread and I thought I would share it here too. I joined this thread when I started Tamoxifen several months ago. My MO warned me that "MOST" of his patients gain a substantial amount of weight with Tamoxifen. With all I am going through, I have no plans of lessening my quality of life by being fat. And so, with determination, I made a few lifestyle changes that have resulted in a 20 lb. loss (30 lbs. if you count my added chemo weight) in the first several months on Tamoxifen. I have always exercised and been fit. That is not an issue. I eat a wide variety of foods, lots of fruits and veggies but also the fattening ones but I carefully control my portions and I shock my system for 2 consecutive days each week by dropping my caloric intake to 500 calories each of those 2 days. I do not exercise on those days but I stay occupied so I'm not snacking. I drink the Ensure nutritional drinks and eat fruit. I also eat while I am exercising. I may have a half an apple or a carrot. I eat fruit as soon as I finish exercising. I am a runner and I have a bad habit of burning off lots of calories only to get home and eat the entire refrigerator. I have carried this extra 20 lbs. for about 8 years since I quit smoking and finally...Wah Laa! It's gone. I'm down to my right weight. Now it is possible that I am one of the lucky few who actually loses weight from Tamoxifen but I do attribute it to this lifestyle change. My objective moving forward is to maintain this weight loss and so far it hasn't been difficult. I am not suggesting this is a good plan for everyone but I am sharing this as I hope it will help someone.
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Warrior_Woman is great that you were able to loose weight and stay active. I have had a similar experience. Before breast cancer I was the ultimate couch potato, no exercise at all. I also gained weight during chemo. I started exercising the same week I started chemo. When I say exercise, I mean just walk slowly and not for very long. I wore my wig to the gym with no issues, since I did not break a sweat.
After chemo, I started taking Tamoxifen, that was three years ago. I continued to exercise and also changed my diet. I lost the chemo weight and some. I started doing weights and for the first time, I feel toned. I am 51 years old and I am in far better shape that I was in my 40's. I found that the gym classes work for me, because they keep me on track. I love Bodypump and HITT (high intensity interval training).
The fact that I feel good does not mean I have not had side effects from Tamoxifen. I have learned to live with hot flashes and vaginal discharge. The joint pain has been annoying. I can no longer do pushups or dips because my wrists hurt, so I do lots of planks.
Tamoxifen affects us in different ways, the important thing is to find ways to do those activities or lifestyle changes that can help you.
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I am new to the boards and this looks like this is a good place to look for some answers. I started Tamoxifen on June 16th - a generic of Fosomax on the 23rd - radiation on the 30th. I was fortunate that I could do a lumpectomy and skip the chemo. I purposely spaced the meds at least a week apart so if there were any immediate major side effects I could tell which was which. I've been doing really well ... saying this is a "bump in the road" and managing everything as usual with the annoyance of having to schedule summer around daily treatments. I'm working my 12 hour shifts keeping in mind I might have to cut back a wee bit if the radiation gets to me. Then came the end of this week. I am suddenly exhausted by the end of the day. But the worse part is my mood lability. I have been tears a number of times a day. My gut impression is it is the Tamoxifen. But how do you know what's causing what? I can't afford to be in a muddle of tears or barking at people. Good thing my husband is really tolerant and understanding. Certainly not a good role model for a working psychiatric nurse. I am also feeling forgetful. I am use to having what I call "cluttered brain syndrome" but this is worse. We have so much going on in my family. My siblings and I are juggling the needs of our elderly father - my daughters planning divorce once her house sells they are splitting. I have six grand children to keep up with. I have a job that frequently calls for quick thinking and multi tasking. I can't afford to feel so out of control, How do I sort it out???
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Puffin I retired from your field of work after 25 years and I know that being in that line of work is stressful! I started tamoxifen on May 20th and I started a very low dose celexa that next week. I know for me those 10mgs keep me even. I've had a couple of bad days but keep a bit of Xanax on hand for that. I have to take this drug. I had no chemo either and I'm highly hormone positive. Its sucks to take a drug that you have to take another drug to deal with the side effects. I use the Teva brand. My pharmacist said he saw people complaining of fewer side effects with it.
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Puffin, it certainly sounds like you have a lot on your plate both with your own treatment and everything going on with your family. Although the tamoxifen may be contributing to mood lability, you might find it to be short-lived. Looking back, for me it seemed that being emotionally up and down was due a large part to the combination of dealing with the cancer diagnosis, surgery and then the radiation. It just really seemed like the radiation left me drained and was the final straw in being able to cope with things. I couldn't count on what my mood might be from one hour to the next. Several months after being done with radiation and getting into my third month on tamoxifen, I felt the emotional roller-coaster really evened out. Our bodies all respond differently, I know, but I hope with a little extra time post radiation and a few months into tamoxifen that it will be better for you too.
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A good quality pro-biotic (like from gnc, and apple cider vinegar/organic w/the mother, a great brand is bragg's acv, is really great for skin problems. Regular vinegar won't work. The vinegar ph balances the body, while pro-biotics supply the body with "good bacteria" to fight and overcome the bad bacteria and yeasts that can case skin problems. I use acidifilous. I stay away from brands that have strains I don't recognize.
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Dear Stenokim
You posted back on June 29th so not sure you will get this but hopefully you do. I had B masec. 8 weeks ago. One side was fine and the other i got armpit and arm pain. I am a physical therapist and i work with a women who specializes in post mastectomy therapy. I got in right away and now and doing great and will return to work tomorrow. I highly recommend you speak with your doctor about getting physical therapy. Make sure you find a therapist that specializes in post mastectomy pain. The therapy can really help especially if you follow through with home program. Most likely won't just go away on its own. Good luck.
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