Bottle o Tamoxifen
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What a way to confused the chemoheads! Monday morning with your coffee and it's only 6pm sunday here!
kept scrolling up and back wondering where the heck I had scrolled to! 
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Lynn - I love hearing what time it is for you in Japan! I'm crossing my fingers, though, that the Pats are successful in their bid for a perfect season.
Cynthia
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Hi Lynn,
How cool 8:30 Monday morning already. I too am hoping the giants win. The patriots have won enough I think. That coffee sounds good too. Make me want to make a pot.
Its too bad their is no declared holiday the day after the super bowl here, but oh well. Im always ready for a day off from work, and at least their are 2 days off this month for us.
I took my 5th pill and Im still doing ok. I was a little moody yesterday, I tend to be impatient and I got a little more impatient with my mom. Im feeling more calm today. I got really bummed because I work 5 days a week then on weekends I take my mom grocery shopping when I go. She doesnt drive and just lives 20 minutes from me. Now it is seeming that by the time I finish that, then get the laundry and some other chores done, its like Saturday is shot. It kind of seems like I dont have a life. I used to walk a lot more than I do and I feel more like I cant do much of anything.
My brother was in the hospital about 4 years ago from a car-wreck and TBI. Who went to see him every day except maybe minus a work day although he was in a coma for 6 weeks? Me. My mom would go but not every day, and I felt like I had to remain the strong one for all of us. He came out of his coma and can get around w/o medication too, but it has imparied him in the cognition and reasoning areas. His synapses just dont fire fast and probably have quite a pattern to go thru before anything registers. He is much slower thinker than before and he does have a limp but can get around including driving by himself. He really doesnt make the best decisions but its his life. I never ask him a question because he will say , "uhhhh" and then I will walk away and he will still be thinking of an answer sometimes it will be, "I dont Know."
I guess I am just tired of being care giver and want some Independence. After this diagnosis of cancer it makes me want to get out and do more living for me. That cant be wrong.
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You go for it, LH. If not now, when???
XX Basha0 -
Lynn,
Well lucky you for taking the day off and seeing those great G-men kick butt. My 13 yr old son is begging me to let him take off from school to go to the parade in Manhattan. I'm actually thinking about it! I'm not happy to hear you have the pain but it helps me to know what it is. Thanks for sharing that.
Labhusky....you should start doing more for yourself. You deserve it and Basha is right...if not now, when????
Hugs to all, Jackie
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Woohoo! Giants are victorious! Sorry, Cynthia, and others who were pulling for the Patriots...next year. Jackie, let your son go to the parade...it's like Haley's Comet; probably won't happen again in his lifetime. :-) Great game for both teams...close all the way, which is what the Super Bowl should be. Now for my annual depression...no more football for a long time. Sigh...
Labhusky, you sure have a lot on your plate with your mom and your brother...I think you're entitled to be a little short-tempered now and then. Caregiving is a tough gig...be gentle with yourself.
Back to work in the morning...it was fun to have a day off. BTW--did you know Super Bowl Monday (here) is a holiday for the US military abroad? They deserve it, with all they do. The doc at the clinic called me this morning, though...guess he decided to work. The results of my bloodwork--tumor marker test--came back and was normal. Another woohoo! Now for my 6-month mammo/ultrasound at the military hospital in Yokosuka at the end of the month...can't wait.
Take care, Tamox friends...
Lynn
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lubhusky- I can totally relate to you RE your bro... My dad is not synapsing right either... I ask him questions and he hums... Hi brain can't form the words. We put him back in the hosptal yesterday. Turns out his sodium and potassium levels were out of whack and contributing to his confusion. (I stayed with him Saturday night and it was a nightmare...too much to go in to but an awful night).
With that said, I have been going from the BAR car to the CHOCOLATE car....or at least DREAMING about doing that. Haven't actually eaten any chocolate and consumed any booze...but I keep threatening to.
My emotions have been crazy which has in turn made my Tamoxi-RAGE very prevalent... I don't have patience for ANYTHING.
Trish- do you notice any other SE's from the Herceptin? I am on it too and notice the swelling in my hands. (Sorry for writing and re-writing this SE...but there are not too many of us on the Herceptin as well...
Harley- enjoy your cruise....
Betsy (and Jackie)- I agree RE the tingling in the chest having to do with the rads... It does eventually go away. I finished my rads last April...
Just sent my Tamoxi prescription to the NEW mail order drugstore. I changed my health insurance Jan 1...really shouldn't have waited to so long b/c I think I only have 2 weeks of Tamox left. Ooops.
Oh, and I think I might even be going on TWO months without forgetting to take a pill.
The CYP2d6 test intrigues me...as far as I know I've never had the test... I have to remember to ask...
Lynn- GO GIANTS!
I was trying desperately to keep my eyes open to watch... What an awesome game. Glad for the Giants...they were awesome...Hi to the rest...Basha, Lisa, Cynthia...chemo brain can't remeber all of your names!! I'm so sorry...
Ok, sorry for the rambling message...just wanted to check in.
Virginia
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Hi ladies! I asked my onc if he would do the CYP2D6 test , and he said it is not standard procedure , and that my insurance probably won't pay just to do it. If I wasn 't having SEs then maybe they would , but he sees my hotflashes and no period as signs that I'm metabolizing it. I still wish he would do the test. My bs said he would , but when he checked with the lab , they never heard of it! I just feel that if I am going to take a drug for 5 years , it better be working and I think they should be testing everyone who is taking it.xxxx Melody
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Hi Ladies,
Lynn....I am letting my son go to the parade with his cousin but I'm a little nervous. He is so excited!!!!!
Virginia...sorry you have all that trouble with your Dad. Hang in there.
I am starting to feel stiffness in my legs when I try to get up after sitting a while. Also, hot flashes all night long. Oh well.
Have a great evening ladies.
Hugs, Jackie
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Virginia,
Hey there! I'll be thinking about you, when I am laying by the pool, with a drink in my hand, just laying in the sun, which I couldn't do while I was getting chemo!!
I'm leaving Friday, driving to Ft. Lauderdale, and we'll be boarding the ship on Saturday! YIKES! I had better start packing! I will probably do MOST of my packing on Wed., because I have an onc appt. tomorrow...
Hope everyone is doing ok on this Tamoxi Train!!
Harley
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Harley,
Have a great trip!!!!
Hugs, Jackie
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Jackie,
I have the stiffness... whenever I sit for long periods, when I get up... oh, boy! It is the Tamoxifen.Thanks!
Hugs,
HARLEY
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Hey ya'll,
How are ya'll sleeping these days? I have been having so much trouble sleeping. I'll toss & turn, and sleep a couple of hours, then wake up again...
Now I am wondering if the Tamoxifen is causing this, too? I was hoping that things would be getting better when I stopped the chemo, and the steroids... It was better for awhile, but now I am having trouble again... getting some headaches, too.
Thanks!
Harley
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Harley- I sent you a PM RE your cruise! 0
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Hmmm. I've only taken 4 pills and so far my face is splotchy and I get dizzy when I stand up some times. My hips and knees hurt, but I'm attributing that to doing extra physical work on the weekend. Oh boy!
Does anybody else get dizzy? You know, light-headed and you have to hold on to something until it clears?
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I was born and raised in Bar Harbor, live in the Newport area now.
I wanted to ask about the CYP 2D6 test (or any other test that would show if the tamoxifen was working) at my last appointment, but I got so anxious I just started crying and couldn't get any questions out. The onc didn't seem concerned about the total lack of side effects, even though I did say I was afraid it wasn't working. Next appointment I think I'll need to take a friend with me--and give her a list of questions to ask for me. Ever since the rads torture treatments I can't get through a doctor's appointment with crying and panic attacks. Sometimes I think it would be a relief if the beast did come back. . . .
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Harley,
Thanks for letting me know about the stiffness. I mean REALLY STIFF. Even if I ride in the car for a long time. I hate it!!!
Does anyone get a racy heart, like palpitations, since tamoxifen?????
Hugs, Jackie
P.S. Harley- I have not slept straight through for one single night since I started tamoxifen in the middle of January. I thought it was my nerves(I panic that I will get a blod clot--I was never a panicker in my life), but maybe it is just the tamoxifen. Interesting....
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Jackie,
Thanks for letting me know that I am not the only one who is having trouble sleeping...
I haven't slept very well for a while now... I just saw my onc, and when I told hime about it... he just said, "well, are you having any sleep related problems? (I guess he meant like sleep apnea... ) I hate it when they just assume we have some other weird health problem, when it really is probably related to the bc or the treatment thereof...
Hugs
Harley
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Harley - I can rarely fall asleep before midnight now, and wake up numerous times during the night, but I'm not having night sweats or hot flashes. If I take an Ativan, I sleep through the night, but I don't want to do that every night so I wait until I really need a good night's sleep. Some nights, I wait until I've tried to sleep for a couple of hours, then give up and take a pill. Lately, I've been waking once a night and so and one of my hands have fallen asleep. Some mornings, my kids have to beg me to get out of bed and feed them breakfast. lol
Sorry, you're having trouble sleeping, too. I hope you figure out something that helps you.
Jackie - I have tachs and palpitations that my gp sent me to a cardiologist for, but I had them before Tamoxifen. My drs think it's due to anxiety, but they want to make sure.
Honeygirl - I think someone told me that most hospitals offer the 2D6 test. I'm pretty sure Mayo hospitals do. There's a thread about the test on here somewhere with a lot of info.
Best wishes everyone!
Cynthia
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Hello ladies!
I've been off the train for a couple of days -- computer problems.
Harley,
I haven't slept well since my dx. I still take a sleeping pill (Ambien CR) every night. I tried once to stop but didn't sleep and it was too late to take anything. I tried for a few days but was so exhausted I decided to wait until I get past my first follow up appointments (less than 2 weeks from now). I function great during the day -- no SE from the ambien. I think you need sleep more than being off the meds. Sleep helps us to heal.
Jackie,
I get stiff too when I sit in one position too long. That's the only SE from the tamox that I seem to have. Glad your son went to the parade -- he'll never forget it.
To all--
Thanks for the thoughts on sun exposure. As much as I love to be in the sunshine, I guess that just won't be any more.
Lynn,
I was happy that the Giants won too. And I'm a Redskins fan!! The Pats are just too smug for me! Sorry to you Pats fans.
Good thoughts to all of you!
D
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I gained about 20 pounds on stupid chemo, quite a surprise. Then had had a very hard time losing it with my 2 yrs on Tamox. Finally it is starting to come off. I am not sure I'm doing much differently, but I have to limit myself to 1000-1200 cals/day for anything to happen. I think the worst thing is the extreme hot /cold flashes, but there has been plenty written on that. I think those may be worse when youstarted this journey premenopausally. I loved my estrogen and miss it. Still, it has been two years since on Tamox, so only 3 more to go.
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Well, I just got my second bottle! That's 3 months worth. So it's 1 down, 19 to go (sounds a little better this way)!
D
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Harley and Jackie: I know what you mean about stiffness. It's most annoying!
In my case, I had osteoarthritis before BC, soi t could be that Tamox is making me stiffer.
Good going. In July,it will be a year since I started taking Tamox.karoline
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Hi Ladies. Hope you all are having a good moment.
Cynthia , when my bs said he would do the 2D6 test , he is at a large university hospital , he was surprised they didn't do it. He asked me to e-mail him info on it. Tender gave me a good site to give him , but I never heard back from him. Has your doc done anymore tests for your palps? Mine just stopped. Sometimes it is so hard to try to figure out why they are occuring. They don't scare me as bad as they use to , but I still hate having them.
Harley , have a great trip! You deserve it.xx
(((((((NativeMainer)))))))) , I'm sorry your having such anxieties at your doc visits. I'm having some anxious moments there too. I was diagnosed this time last year , and I am having some flashback emotions lately. Please don't think it would be good if the beast came back. Try not to let the fear grip you. I think its a good idea to take a friend with a list of questions. Hang in there.xx
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Native Mainer -
{HUGS}
Harley
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Melodie - I have to wear the Holter monitor for another week and a half, then I'll meet with my cardiologist a couple of weeks after that to see what she says about my palpitations. She had me do a treadmill test before I was fitted with the monitor, but I don't know what it showed. My gp has me on Toprol XL which is a beta blocker and is supposed to slow my heartrate down and prevent palpitations, but while it's lowered my blood pressure (unnecessarily so, lol) and slowed my heartrate a bit, it hasn't really helped with the palpitations and tachs. I've already had an echo which was normal, so it's either related to the electrical workings of the heart, or it's normal. I've had quite a few events to record for her to look. I had almost none stop palpitations yesterday and the day before. It was so exhausting and nothing I did seemed to help. Finally, I decided that I would take more Pepcid than is recommended since I was experiencing reflux, and it seemed to help with the palps. Then as fast as they started, they stopped. I'm pretty sure my heart is sensitive to reflux and other abdominal issues. I've also had palps and tachs as a result of eating too much refined corn products like candy with corn syrup (ie: Jelly Belly beans, lol). Anxiety will also bring on tachs. I agree it's scary at times. I hate them, too.Harley - Have fun on your trip! I hope everything is perfect for you.
Cynthia
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Wow~ Cythinia, I'm listening intentatively to your descriptions of the palps and tachs. I've had similar but never the constant problems over the last few years and they've gotten worse since the diagnosis. I figured it was the result of the anxiety of dx and tx. But it's interesting what you've been writing in regards to them. I just figured it was anxiety. Did or do you have High bp also? Mine has always been low like 90/50 or so, so i don't think it's that. Did you have other symptoms beside the palp and tachs, or just those that you went in to have checked out?
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Wishiwere - I also have normally low blood pressure. I went to the dr specifically for the palps, but I was experiencing swollen and stiff hands at night, too. I've always been prone to palps, but they went to a new level during chemo. My onc was convinced they were normal, even though they kept me awake or trying to sleep sitting up 2 or 3 nights each chemo cycle. I would also get them sometimes from bending over. I was still having them even after I had finished rads so I finally decided enough was enough. My gp initially did blood work, an EKG, and a 24 hr Holter monitor. The results of the monitor showed that my heart rate rarely dropped under 100 beats per min in the 24 hrs, so she was adamant that I needed a beta blocker to slow it down. I was reluctant to take it, but I got a lot of info from women on here who take it so I gave it a try. The only side effect that I notice is feeling tired, and sometimes lightheadedness from the lowering of my blood pressure. When it didn't help with the palps and tachs, she referred me to a cardiologist. My cardiologist is using the 30 day Holter event monitor to determine from which part of my heart the palps are coming from. The treadmill test was to see if stress would bring it on and I didn't feel any palps until the very end of the test.
Ugh, I just had a bunch of palps. I phoned them in to the monitor center and he said there were more of them, but still harmless. Easy for him to say. lol I noticed a few minutes after they started that my tummy was gurgling, so maybe it's time for more Pepcid.
Oh, I wanted to mention that when my gp first said that my fast heart rate was probably due to anxiety, I disagreed. It wasn't until much later when I had time to really think about it that it dawned on me that I was in fact anxious, but I had just grown used to it. It's funny to me now that it was obvious to everyone but myself. I thought I was handling things pretty well, but it's hard not to feel anxious when something turns your life upside down, I guess.
Cynthia
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Interesting. I'll be curiously watching and waiting with you to find out what they think is causing it. Did you have A/C? It's hard to remember who had what?
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Cynthia,
Hope the next 1 1/2 weeks will tell your dr. what is up with your heart and the palpitations/taccy...
I'll probably be busy packing today. Take care. I'll check in when I get back to see if you have any news!
best wishes,
Harley
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