Bottle o Tamoxifen
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JO glad all went OK. DH takes 75mg nortrptyline for his neuropothy as well. He has not had any problems with the meds
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Jo, thanks for the update. I hope the med change does the trick for you.
Paula, all I can say is OMG!!!!!!!!!!!!!!!!!! (drooling!)
BTW, I have not actually discontinued the tamoxifen yet.... just thinking about it. First I am trying to get off other meds that might be contributing to the fatigue, and maybe that will help. I actually noticed something very odd about my pain (I am taking a mindfulness-based class for pain relief, so was thinking a lot about the pain in a "non-judgmental way") - it seems worse in the mornings when I need to get up, feels like all my nerve endings in all my muscles and bones are "on fire" or stimulated and I just don't want to move. But when I finally get going, it seems to settle down. Today, we were sitting for about an hour and a half with this class, and I noticed that after about an hour of not moving much, the pain started up, and it got better again as I became active. I am very curious about this. Is it related to elevated epinephrine or serotonin levels with activity that then relieve the pain? Is it related to the gate theory of pain? Is it all in my head? So, if I can get past the fatigue and stay active, I may have less pain?? Lots of questions, no answers, but am hopeful that at least THIS pain can improve with some effort on my part. I tend to be pro-active if I can be to address symptoms, and the ones that I have to be patient and wait for healing are the ones that drive me crazy! And the scientist in my continues to look for explanations and answers.
Hugs to all my tammi sisters tonight. Thanks for being here.
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Sherry - I do hope this one works. Will let you know in a day or 2. The one thing I am a bit concerned about is getting up in the morning. I had been taking the amitriptyline about an hour before I went to bed and I seemed alright. If I took it right at bedtime, then I felt hung over the next morning. With the increased dose, I am thinking I may have to take it even earlier.
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Interesting questions Linda. I don't know the answer, but my joint pains also get better when I move as well. I am starting a mindfulness class too, at the end of January. What do you think of it? I am really looking forward to it.
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Linda I do know that chemo really did a number on me and then right after that I started Tammo. I was in terrible pain from the Taxol, but alot of that went away. Still alot of it did stay though, and it is from the combo according to the onc. I noticed the same with the pain as you described. I am at my worst in the mornings. It does take me sometimes up to 3 hours before I get any kind of relief. I have to dig deep into it mentally it seems like for awhile. I sometimes am stubborn and try my best to just go with it. Other days I break down and take something for it.
You know I was thinking tonite that this wicked BC really has me coming and going sometimes. You know I can handle the physical stuff that has come my way in this past year, but my mind is whats really messing with me. I have always been a strong minded gal and this has really thrown a monkey wrench into it. Its not like I going off the deep end anytime soon, it just hard to explain. I kinda feel lost abit. Its like the last year I had to fight fight fight. Now Im left with what I dont know. Does anyone of you feel the same or am I just a few fries short of a Happy Meal right now. Any thoughts would be helpful!
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Ladies, I'm trying to get a list of SEs by brand of Tamox. Am especially interested in the experiences of those who've tried more than one brand. If you'd like to add your $.02, please do:
http://community.breastcancer.org/forum/78/topic/780814?page=1#top
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Paula- I'm with you. Emotionally draining. Cruel disease. Hugs.
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Emotionally and mentally draining!
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Totally understand, Paula. I'm right there with ya. And I was wondering the other day how long that feeling will last. It seems like, at least for me, it's been a little worse lately. Very down. Not sure why.
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Hiya!
I started Tamox on January 1st... (Happy New Year to me! woohoo!) I've been on it now for a little over a week and I must say that the joint pain and fatigue is far worse than I expected. I suppose the fatigue certainly is worse due to the fibromyalgia I have among other joint problems but good gods I wake up in a LOT of pain on a regular basis. The mood swings I can deal with as I was diagnosed with Premenstrual Disphoric Disorder when I was 14 so that's nothing new -- and I absolutely refuse to go on antidepressants. Been there.. done that -- it only makes things worse. I am however on Xanax as I have anxiety and I have noticed a serious increase in the severity of anxiety attacks and what "sets me off." The biggest side effect/complaint? -- the joint and muscle pain is brutal and the fatigue... OMG! I feel like every simple movement is like bench-pressing an elephant. It's ridiculous how tired I am from simple tasks. Tonight, I chopped some veggies for stir-fry and I felt like I had carried 6 bags of groceries up three flights of stairs back when I lived in a 3rd-floor apartment. I am hoping the weight loss that the drug claims is one of the side effects hits me hard cuz I'd love to drop a good amount of weight. That'd be awesome. Because of the lymphedema in my breast, I have gone bra-less for months now and have been using the HUGE ace bandages to bind them girls up to reduce the swelling. Let me tell you -- when you have DDs, not wearing a bra kinda drags. Get it? I crack myself up. LOL Anyone else have itching of the skin of the affected breast -- especially itching associated with lymphedema? It's maddening and I am calling my oncologist tomorrow as I am concerned with the heat and swelling. Want to rule out cellulitis as I had that in the breast post surgery. Man that sucked! My great grandmother, grndmother, and my mom all have had breast cancer with my great grandmother dying at 38. Hers was what we now know was probably aggressive breast cancer like mine -- but that was back in the 40's and much has improved since then. I have not had the BRCA test yet but my mother did and hers was negative so I am praying mine is as well. If I pop positive for the BRCA, my docs are already in talks about removing my ovaries as I already have two rather large cysts on my left ovary that have caused me 2 ER visits from excruciating pain in the past. Anyhoo... In October 2010 when I found the lump, it was about the size of a grape... by May 2011, before my lumpectomy, it was the size of a walnut. Here's the run-down on me -- Age 36 when diagnosed with: IDC IIA (Late Stage 1/Early Stage 2 T1c sized tumor N0) ER/PR+ HER2 +. I went through Taxotere with Carboplatin and Herceptin. I am still on Herceptin treatment and started Tamoxifen 1/1/12. I also take Tramadol for pain (both for fibromyalgia pain and pain from the "zings" following radiation, the lymphedema pain, and other associated pain post surgery).
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Paula.. I absolutley agree. Everything is so different now especially emotionally. I just dont seem to be able to habdle things like I did before. I stress very easily and have such a hard time focusing. I adore my family but there are days I want to get in the car and just drive far far away. I wouldnt but I feel like. Im with ya sista!!!!!! hugs!
Let em swing... welcome aboard. I actually do have itching across my chest as well. comes and goes though!. wishing you well and we are here for whatever you may need
Hope all my Tammy ladies are having a good day
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I totally agree on the stress and anxiety. That's why I am taking the mindfulness class starting the end of the month. Hope it helps.
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A friend of mine suggested I join a group like this. I hope to stick with it. These waves of sheer exhaustion that come over me from taking the Tamoxifen are terrible. Enough to make me crazy! I will sit here and go from one yawn to the next and you want to go back to bed but when you get there, you're so damn hot that you can't fall asleep! grrr.
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Welcome DDs - I'm sorry tamox is kicking you in the butt so fast! Sounds like you've had your share of fun in the past year like many of us! We are all here to support each other, so please stick with it! We get a little silly at times - helps us all cope!
Nap when you need to, the SEs should ease soon!
Vicky
(Oh and I get the itching too) - BC just keeps on giving!
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MamaV: Cool! You're in the Chicago area too! I get silly all the time. Constantly.
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Anyone else here HER2+? I'd like to hear if anyone has experienced any side effects from Herceptin as well.
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I'm on herceptin. I think my joint pains and aches are more from herceptin than tamoxifen. They seem a little better as I get further away from the herceptin tx. I do think the tamoxifen is contributing as well though. I guess there is no way to really know for sure. Until I'm done with herceptin 5 months any way.
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Let em swing not only reading your post do you crack me up but your screen name as well.....The ladies here are awesome and I am sorry you are going through so much. Vent away each and every day as if it wasn't for this site I would be in the loony bin. Each one of us is different in so many ways as we are alike. I can complain to my friends, which I know they listen but they cant possibly grasp it as all the ladies do here. I will say that my SE subsided around I think month 4-5 and then a whole different class of them started well into my 2nd year. Some women surprisingly well on Tamox once your body gets used to it....hanging there girlfriend and looking forward to getting to know you.....
Paula I feel the same way as you and I too wish I could run away and I think I have vocalized that a few times and then feel like shit when I do openly speak my mind. And I don't think your a few fries away from a happy meal......you are a strong woman and will get through this hurdle.....I think this is good reason for a pillow fight.....get out your frustrations eh?
Linda stay strong and sorry you are feeling like shit......When I started Tamox I jumped right into walking 5-7 times a week as I wanted to be proactive and get a jump start on this med and not let it take over my life and for the first year and a few months it worked well, but now that i have planter fasciitis I sometimes wonder would I have had this foot problem it I wasn't on Tammi? Even my PT thinks it could be whats causing the inflammation.....I guess I will never know that one, that is why I contemplated getting off Tami, but then afraid to start back up and have my SE worse than before....make sense?? Anyways sending you great big hugs.
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Going for my mammo tomorrow, so I'm hoping I can take all you ladies with me, as I am very nervous. Not sure if they will tell me right there if things are OK or if I'll have to wait until I see the surgeon next week. With all the ones I've had during this whole BC ride, they have told me right then and there what the results were, but they consider this one a "routine screening" mammogram. Don't they understand that once you have BC, NO mammogram is ever considered "routine" ever again?!?! I'll be wearing a shirt with extra big pockets so there will plenty of room for all of you, the chocolate, drinks, brownies AND a few of those cute guys that Paula always seems to find pics of!
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Count me in Deb! Even if there was no chocolate or cuties. Good luck!
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Let em Swing - I've been on Tammy for 15 months now. the Se's seem to vary so much for each of us. Radiation left me with fatigue that got worse even after I finished treatment. Finished Rads in Sept 2010 and didn't start Tammy until November. Tammy made the fatigue worse but after two ir three months it got better. I still don't have the energy or endurance I used to have but I'm much better than I was.
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Paula you are not crazy I feel that way sometimes too. This last year has been a ride and not a good one.
Let em swing welcome to the group, glad you found us.
Deb will be in your pocket.
I finally got my MRI results and no mets to my neck. PCP still thinks it is athritis and after I researched cervical arthritis I do agree with him, plus my old neck injury I don't know how I could escape having arthritis. I realized last night that this neck pain started after I my last surgery when I started back on tamox and it has gotten worse. I asked him about taking a holiday form tamox for a couple of weeks and doing another steroid pac. He thinks that is very reasonable to try but he wants me to talk to my MO about it and see if he will give me his blessing. But then said you have to make the decision and then call me back if you want the steroid pac. So I see my MO on Friday and will talk to him about it but will be taking a Holiday with or without his blessing. If none of this works then he will send me to a spine doctor to maybe try some injections to get off the hydrocodone, but he knows I am trying to take as little as possible.
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Good news on no mets! It sux that you're still looking for relief though.
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Deb, I'll will be in your pocket! Count me in.
My first MO appointment is tomorrow night. I will be getting my oncotype result as the score is in. I'm already getting so nervous.
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June2268 : are you sure it is planter fascilitis, I thought this when I was on Cholestrol medication, Statins. It turned out to be the medication was causing nerve damage, for me it was permenant. First I could hardly stand to walk on my feet, they hurt, then stabbing pains, then feet and hands were numb. I had tests, I have permenant nerve damage from that medication. When I started taking Tamoxefin, the same thing started happening again, I quit taking the pill, I thought just what I need more nerve damage.
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My sister told me yesterday that one of her friends developed uterine cancer 2 years after starting Tamoxifen. She said they told her it was a direct result of taking Tammo. Ha sanyone heard of this? My sis tends to exaggerate sometimes and makes everything out to seem worse than it is so I don't want to get too worked up about it!
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beebop uterine cancer is the very serious SE from tamox. Most GYN's will check the thickness of your uterus yearly and keep a watch on it while on Tamox. I have had my uterus removed years ago so thankfully that is one less thing I have to worry about.
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Thanks for the info Sherry, that's good to know!
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Yes bebop, my onc warned me about uterine cancer from tamoxifen, but said before it turned to cancer, there would be signs that would alert you, specifically bleeding. Regular periods are fine, but any other bleeding and I was told to contact my onc immediately. She said they could do something about it then and it would never get to become cancer. It doesn't seem like that happens 100% of the time though. I have a gyn appointment in February and will ask about it.
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Vickilf I am so frustrated as how do I know? I was thinking it might be from the meds, but the Podiatrist swears it is planter fasciitis. How do I get someone to listen to me? Wondering strongly if I should go off this drug?
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