Bottle o Tamoxifen
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Had a lot of reading to catch up on ... not much to comment ... so just have a great day everyone ... remember each day is a gift!
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Sherry - I'm coming too, and of course bringing brownies. No one gets them if they misbehave!
Purrs,
jenn
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jenn I love brownies oh really just anything chocolate.
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Good luck with the MRI Sherry! I'll keep you in prayers today. I don't like MRI's at all. Concentrate on something wonderful like laying on a beach drinking a nice cool drink and getting a massage by a handsome guy.
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going in the machine0 -
Sherry: Good luck today. I hope all goes well. Now why do I suddenly have a craving for brownies?!?!
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Sherry - I will be in your pockets today - good luck.
I have an appt with the pain doctor tomorrow at 2:00. The nerve pain from rads which I am told is Neuralgia is acting up something terrible and I can not do this. Also, third day off Tamox and already I am feeling so much better. Will see how the next couple of weeks go and then I will decide if I am going to go back on it.
Hope everyone is having a good Monday.
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Jo, I am also on day 3 without Tamox and I, too, am feeling so much better. Bone pain has disapated and the rash/hives have almost disappeared. Amazing! I get a reprieve until mid-February when I see my Onc.
I hope everyone has a great week.
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newfmama - It is amazing that 3 days is all it takes to feeling better. My Onc doesn't know I am doing this and I don't think I am going to tell him right now.
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Jo, I am so sorry you are having neuralgia from the rads. I hope the pain doc can help you out. If you need some more information, check out one of the threads on permanent neuropathy or venting about neuropathy.... I can't remember exactly which one, but one of the ladies has posted some really good information about her visits with a doc who specializes in breast cancer treatment-induced neuropathy and has had really good help from him. If you need, I will try to find it again for you.
Jo and Newfmama, I am so close to following you on ditching the tamoxifen. I have not felt well since my first chemo in Oct. 2010, so tired I am in bed or chair about 12-14 hours a day, have such severe pain in the mornings I can hardly force myself out of bed. Once I get going I can get distracted and function pretty well, but am still having to take a pain pill as soon as I get home from work to get it settled down. Ugh. I am just more afraid to go off it now because when I went off in the spring and felt lot better, the cancer recurred. Just wish I knew if it's actually doing any good..... *sigh* .... wonder if I will ever be able to do a backpack trip again - I would even settle for day hikes at this point!
Ladies, I don't think I had more than one or two hot flashes today! My office is so cold I don't think I even got warm today, hands like ice, chilled to the bone. May have to get a space heater in there, and it is a brand new building that you would think would be easier to regulate the temperatures, but apparently not.
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Linda - How long were you off the Tamox before your recurrence? Believe it or not, I am not scared of being off it - I am just curious. I have given this whole thing a lot of thought and it comes down to I will have to stop it sooner or later and what difference is it going to make????
Thanks for the info on the neuropathy thread. I will look for it.
WIll post what the pain doctor says when I get back tomorrow afternoon.
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Jo, I was on tamoxifen from Jan to end of Feb, about 6-8 weeks. Cancer found in July after NED on PET scan in January. I had thought the chemo did its job, was having awful SEs and just had to get off it to feel better. I never did get all my energy back, so went into surgery with very limited reserve in October (I delayed surgery to go on a trip that I had planned and had cancelled last year to start chemo). I am not sure if I am afraid of going off the tamoxifen - it just seems like I have complied with almost all recommended treatments (except rads, and the MO, RO, BS were all unhappy about that), and nothing has improved my life, just decreased quality in so many ways. The statistics say that 5 years of tamoxifen greatly reduces odds of cancer recurring, but in my case, the absolute reduction is only about 5-10%, and I'm just not sure that is enough to justify continuing the SEs. I think even 2 years is supposed to help a lot also.
You are right that you go off the tamoxifen at some point. But there are studies looking at tamoxifen for 2-5 years, followed by 5 or MORE years of AI. Most studies are showing AIs to be better than tamoxifen for preventing recurrence, but they have another whole host of SEs.
BTW, I was terrified of having radiation injury to my axillary nerves to my dominant arm, especially since I had the neuropathy from chemo. I probably would have done the rads if I hadn't already had to deal with the chronic pain issues and figured if anyone was going to have problems with nerve damage, it would be me. The RO assured me that she had never seen a case in her practice over 10 years, but I just couldn't find peace in agreeing to treatment, but WAS at peace without it.
Sorry about being so loquacious tonight.
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Jo good luck tomorrow and I am sure we can all party in your pocket if you like......I miss you, would be fun....
Linda honey, so sorry you have to be feeling so much like shit. Scary that you had a recurrence and I would be skeptical to go off it again.....what to do? Were you really off of it that long?
Trying to plan a trip for the kids during spring break and YIKES the prices are crazier than ever......off to bed early ladies.....still waiting to hear from Sherry.
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June, thanks! Yes, part of me is very much not wanting to go off the tamoxifen as it seems that is the only thing left for me right now to fight off those cancer cells that might still be looking for a place to land, but the other part of me sometimes just wants to go off all meds that make me feel bad so I could feel good for at least a little while again. I so want my old life back, but that just isn't going to happen right now, so it's back to meditation classes to get my distress taken care of! I was only on tamoxifen less than 8 weeks, then off of it for 4-5 months before the recurrence was found.
I do have to say that I seem to be gaining a little more over the past week - was able to work every day with pretty good energy level while at the office rather than dragging for the last half of the day! I feel so guilty when I grumble about myself because so many others have situations that are so much worse - I have a loving DH, 3 loving sisters who came to spend a few days, a "cheerleader" mother who is an 18-year BC survivor, and a loving baby brother, all of whom have supported me over the past year and a half, along with all the ladies here, my colleagues at work, my students, people at my church.... the list goes on and on. I am truly blessed with good people in my life, and I do want to be able to continue caring for them as well.
June, where will you and your family be going for spring break?
Sherry, this is a bit late, and I hope your MRI went well. I usually imagine I am at a "STOMP out loud" concert or some other percussion group.... loud and raucous rhythms! Hope you get answers and a GOOD PROGNOSIS!
Jo, best wishes to you tomorrow as well. I will be thiinking of you.
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Well Sherry since I wasnt able to get you some boy toys for the machine in time, I am sending you some good luck toys instead, lol! Enjoy!
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Finished chemo in Nov. (TCH). Going to start Tamoxifen today. I'm a little nervous but after the last year will give it a try.Just curious as to how many of you did not do radiation? My Oncologist said I did not need it as my margins were clear? Wonder if I should get a second opinion? Also I had reconstruction surgery a with an expander which had to be removed due to an infection. How long did any of you wait to try it again.
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Jo will be with you tomorrow.... ill be good in your pocket
Linda it is a rock and a hard place. I am so sorry you are having a tough time now. Dont ever feel bad about "grumbling" we have to have a release. It is hard ot always try and be strong. HUgs!
Sherry hope your doing well!!!!!
Junie hi!!!!!!
Paula all i can say is wow you never dissapoint lol!
Theresa.. welcome aboard! I did not have rads either. and the reconstruction I had was a DIEP flap. So sorry you are having an issue with infection. Hoping you are able to clear it up soon and feel better!!!!
all my tammy friends have a good night!
Maria
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Linda - Unfortunately I can not take any of the ALs - tried both Armidex and Femara. So I am stuck with the Tamox. I am so sorry to hear you have such a hard time with the chemo. I can't imagine what it was like since I did not have it. Rads were not exactly a walk in the park for me and I have already made it known to my MO if I had to deal with a recurrence, I would not have rads again. It might compel me to stay on the Tamox like a good girl but so far I am not at that point.
Paula - All I can say is Wow! on the eye candy. Where's mine? LOL!
Tink - You know I don't mind the pocket parties and of course you can come along - I have that special place on my right shoulder for you. Just be careful with the wings will ya? LOL!
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Hey ladies thanks for thinking of me. I made it fine, it was a long MRI as they did both my cervical and thoracic so it took about an hour. I had called my pain Dr on the way there and he wanted me to bring the films with me to my appt on Friday so I was able to leave with them today. Now I just wish I knew how to read them. Where is my brother when I need him. I should probably have the results tomorrow no later than wed. But also while I was there I went ahead and got a copy of my breast MRI from last year that found my cancer. I put the disk in my computer and found the images. It was weird looking at it because I spotted the cancer right away. My BS had never shown me my MRI films so I had not seen them. But with the contrasting dye you could not miss it. I am having a breast MRI next monday as a follow up from my last surgery since my marker came out. Just a precaution before I have my BMX. I need to take the MRI with me as I am going to another facility in the City that specializes in breast stuff. It is a larger breast center. I'll keep you all posted.
You all were on good behavior today, but even if you were making noise no one could here you with that noisy MRI machine going. Thank goodness for the ear plugs.
Jo I'll be with you tomorrow, keep us posted.0 -
Jo and Linda I wish I could be as brave as both of you and stop the Tammo. Good Luck and Im sure this will work out for you both.
Welcome steresa. I didnt have rads either because of the clear margins. My sissy had BC 2 times and she had rads on one side but not the other. The first time it had went to her nodes but the 2 time it didnt. I was lucky and had no TE problems. I do know that there are some threads here that might be able to help you with the TE questions.
Jo this is for you girl!
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Damn Paula now thats what I am talking about.....woo hoo!
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Feeling a little fiesty this am ... bet those hot guys are gay! LOL!
Have a great day all - Glad you made it through your MRI Sherry - let us know on results!
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Paula - Girlfriend - Now that is what I'm talking about - thanks bunches. And to think - he is all mine. I might share but then again I may not........
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Jo I'm in your pocket0 -
Make room for me in Jo's pocket.
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I have plenty of room and no you don't have to behave today. Let's have a real pocket party. I can tell Tink is already on my shoulder and ready to fly.
Will update later today.
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You girls make me smile. Yowsa. I plan to write more later. Good luck with your results Sherry.
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Good luck Jo I will be thinking of you
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Good luck Sherry and Jo, hope you get answers and soon!
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Well ladies, I am back from the doctor and thanks so much for the pocket party. You gals were pretty quiet. The bottom line is he told me that neuropathic pains issues are hard to diagnose and treat. He asked me several times if I had chemo and I kept saying no I did not. He was thinking out loud at one time and was going to send me to a neurologist but did not think it would do any good. So he changed my medication - I went from taking amitriptyline 50mgs to nortriptyline 75 mgs. The latter is a step up from the one I was taking. I go back in two weeks. So for the next 2 Tuesdays I have doctors appts - Yikes! When does this shit end. Just when I thought I was back to routine appts - guess not!!!
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