Bottle 'o Tamoxifen
Comments
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Tink - That's okay! I don't either but I know where all the good food is on the ship. Heck, this will be my 4th time. In particular, I know where the ice cream and 24 hour pizza bar is. They have a great ceasar salad to go along with the pizza. Love the suitcase.
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You know ladies...I also think the reason we do not get all this informatino is because hey say it every day....liek the front desk staff at school getting frustrated by the kids who do not pay their rent on time ( they KNoW they have to pay)...well, actually a lot of them don't...the other 150 do..but the 20 new ones don't have a clue as they get too much info the first day and zone out...and because everyone is busy, new students do not always get provided with the same information....my oncologist was detailed in the explanation of my prognosis etc. but somewhat cavalier about it too "see you in two years". you are the perfect candidate for this drug and healthy so no worries"...bit different scene now...
But things like flying....and not taking tami if you are going in for surgery....a. why not??? because of potential for blood clots? and b. why isn't this in a brochure somewhere????
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Wow less than 24 hours on this thread and I am 2 pages behind......
Tink and Jo if you 2 girls team up I think I am going to have to recruit the rest of the girls as you 2 have the advantage with Tink and her wings. She can carry you anywhere to dive bomb us with those fluffy pillows....watch out ladies, I think we might be in trouble this week....
SherryI am so glad to hear you might be finally getting relief. I love to hear happy news.....
Alicia and JoI would call your Onc and ask them about flying. Why would anyone ever think their Tamox would cause problems? How strange......
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June - I personally don't think flying and taking Tammy is a big deal. I wouldn't think twice about flying if I needed to. I have done some research online and I can't find anything that says you can't.
As for me and Tink - all I can say is - CHICKEN! Just remember she asked me first.
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Hi folks,
Apologize if this has been asked. Do any of you get blood drawn at your onc appointments, specifically for the Cancer Antigen 15-3? The reason I ask is I got my results and it says the normal range is 0-25 and mine is a 24.1. I called the Dr's office and asked, hey should I not be getting a PET scan or something, this looks significant? And their response is as long as it's in the normal range, we don't worry about. Well yes it's in the normal range but just BARELY. Has me a little concerned.
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June/Jo- I am wondering if it is the potential for blood clots that has some oncologists warning their patients...and it could just be folks with high BP or who are on blood thinners? No idea but it is disturbing...then again, so is the news my galpal told me on the weekend (her husband works in the field) to be told how common it is on flights (esp. longer ones ) to have someone die of a heart attack....very disturbing. Likely why I didn't sleep last night....
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Sandee - If I had high BP and/or a heart condition or on blood thinners I would definitely check with my onc before flying. It only makes sense. We can't be too careful you know.
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Flying and Tammy because of blod clots? Wouldn't that be the same as not taking birth control pills when you fly for the same fear? That's an odd thing for a doc to say...I haven't found anything on it either!
jo1955: Have you tried during waking hours to plan a response to your nightmare? For instance, walk yourself through the steps you've taken and your successes...then if the nightmare hits againg, can you stay in it enough to dream through the healing steps...In other words fight the nightmare with what you know in your wakeful hours. It's sounds odd., but it's a technique that's worked for me with recurring nightmares.
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SURFETTE..Im sorry I dont have any advice to offer. My onc has not really done much blood work on me at all. She also has never even mentioned anything about that kind of test either. I can understand your concern though... they just dont get what is not signifigant to them is VERY signifigant to us! hugs!
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GirlFriday - Thanks so much for the suggestion - I will give it a try. I agree with the reasoning you gave - why would one not take birth control pills while flying?
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Jo you play hard....ouch!
The storms are rolling in and years ago I was never a big fan, however these days I find myself liking them. I think I would change my mind if I lived down South or Midwest where more severe weather happens.....
I go for my Endoscopy tomorrow and why is it I am feeling better.....yesterday was at like 60% improvement and today more like 85% so should I even bother? I hate to chicken out, but I don't want to waste any ones time either.....advice all?
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JUNE.. I would go because if you start to feel bad again then you have to start the process all over again At least if you go if anything it will give you piece of mind and if it comes back you will not have to worry about what it "might" be.... thats just my opinion sweetie...love ya! hugs
It stormed something terrible last night... still raining now and very windy!!!! yucko!
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TInk thank you and I know you are probably right I should just suck it up and go I know......kiss kiss friend! Hows the kids doing?
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June... I think you would feel better if you did go ... it wouldnt be hanging over your head... you can do this !!! xo
They are good making me nuts but good lol.. the Teen years are very long... My son is getting excited about graduation in June.. and My daughter is still exhausted from retreat weekend... but doing ok... how about yours? when do they get out for summer break? .. Justin graduates June 4 th and I think Ali"s last day is June 14th. have a great day!!! hugs!
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Tink ~ I am loving your suitcase. Glad JO is taking you ~
I am sure I can make room for some of you in my suitcase although I generally overpack for a cruise !!! LOL
June ~ I am glad you are feeling better but, go have the test done so you can rule that out.
I just came from my primary care DR. I told him I think I am feeling anxious as all my tests are next month. He said cancer changes you for sure. NO SHIT !? I told him I hate the tamoxifen and don't want to take it. He said I have to ! So I will re-visit that with my onc in May but am sure she will tell me the same thing. He gave me diflucan as I think I have something brewing down yonder, he said stress and tamoxifen can do that and recommended I eat probiotics yogurt often. He gave me some ativan to have on hand for anxiety times. He also did a caratoid artery US and a echo of my heart. I will have those results next week. He said all my testing done in the hospital was perfect, heart, bloodwork, cholesterol, chest xray, thyroid, and liver tests all great. So I guess I need to stop worrying about every little thing !
We have a rainy storm here today too as well. I wish I could crawl up on the couch now but my cleaning girls are here making everything pretty !
Wishing everyone a great day ~ Thanks for listening to me vent.
Alicia
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June - I have to agree with Tink - even though you are feeling better, go have the test done anyway. That way you won't have to start the process all over again. You can do this sweetie - I will go along and hold your hand.
Alicia - Instead of eating probiotic yogurts you can take acidophilus (can be found the the vitamin section of any store) - it does the same thing. I have been taking it regularly for several years. It helps me when I have to take antibiotics - they tend to give me yeast infections. jAs far as HAVING to take Tamoxifen - you don't have to do anything but I will tell you, I really don't want to either. I do it as an added insurance policy. I have had some SEs but have worked through them. Good news on the testing being perfect.
No matter what - we are going to worry about every little thing. Just don't stress over it.
We are getting closer to leaving. Then all we have to think about it what we are going to do next for fun.
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Alicia I am so happy that everything came back negative...yay!!!! Ativan is also good to have on hand when you feel you need it, I still have mine and I will not toss it, cause one never knows when it will come in handy.....hard not to worry after all you have been through and please vent as we are all here for each other and it truly does make us feel better doesn't it? I have the same shitty weather here but as long as it is not snow I'll take it.....glad you are going to have a nice clean house.......hugs!
Tinkmy kids get out late this year due to all the snow days we had this year.....June 21st 1/2 day but it was supposed to be June 13th......I love them home with me even though they bicker.....they love all the kids in the daycare as well so that helps as sometimes it can make my job easier.....however on the other hand I cannot do much with them as I am taking care of everyone else, so I feel bad sometimes as well.....oh well!
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Surfette-what are you other tumor markers?? I have had the 15-3 done once but they do the CA 27.29 every time and the CEA every time. I think they look at all of it to put a picture together. My CA 27.29 started out really low but keeps climbing and is now about midway in the normal range but my MO says for me not to worry about it as well. I think because my CEA stays the same. They also look at your calcium levels and other things in your blood work that would tip them off if your cancer was back. Ask your MO exactly what he looks for in your blood work.
June-I definitely think you should go ahead and go. If you don't the next day you will feel bad again and wish you had had it done. IF something is wrong they will find it whether you are feeling bad or not.
Alicia glad the all the test were good, hopefully this last batch will be as good also. Glad he gave you Ativan for your anxiety. I think I need to ask for some of that, there are times I could use it. The acidophilus Jo suggest is good, I have taken it for quite some time as I am very prone to yeast infections. My MO says I should take 8billion a day, I am taking 4 until I use up these and then will purchase some more of the higher dosage.
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Sherryc: that is the only tumor marker they ran. They did a comp metabolic panel, everythng was normal except the serum glucose was 95 out of 99 and I thought that was a little high too.
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Surfette I would ask abut the other tumor markers and also what he looks for in your bloodwork.
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June - ditto on the 'go', as frustrating as it is my dear....better to get 'er done than not...and it wouldbe nice to add a positive, no problem test to the others for balance, hmm?
Alicia- glad all your xrays and blood work etc. came back good. That is a RELIEF! It is normal to feel anxious...and to feel good one day and not the next....today is my first 'feel sorry for Sandee' day since the heart attack...guess I am entitled but I am also peopled-out, you know? You are also allowed (expected) to have some anxious days.
Jo- yeah...right....re. flying and reasons to stop the pilll...it was the only jump in logical I could make that someone would be told to stop them before flying....until 2 weeks ago, I had no reason to think I should tell anyone anything about my flying...that is why I assessed 3x in the winter...was afraid cancer would rear her ugly head again on my June mammogram and my wings (bigger than Tink's) would be clipped again. I will ask my onc..maybe we should ALL ask out onc's and then we can compare answers!
My rad. nurse told me yesterday that they run a mammogram 5-6 months post radiation so when I went in for my doctor's note an hour ago, I requested they move my time up to May if possible instead of June....I need to get this over with!
My cat-sitter pal was going to come over and I have texted him to say ' uh....could we wait until the end of the week instead? I am overwhelmed here"....so....would rather just have a night of reading (bought the newest Oprah at the drugstore fo rtha purpose today!) or watch tv or whatever by myself and go to work tomorrow and sort out how I feel about all that too...ah well...24 hour rule!
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Sandee ~ you sure are entitled to be feeling sorry for yourself a bit. You have surely been through a lot and it is probably all just catching up to you now. Enjoy the Oprah magazine, light a candle and relax !
Surfette ~ I would think as long as you are in "the normal range" you are okay. But I imagine seeing it in the higher end would alarm me as well. God I almost wish they didn't do all these stupid tests, they just create more anxiety. Let us know what you find out.
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Completely overwhelmed now....just got a call from my oncologist's nurse who said STOP the TAMOXiFEN NOW. because of the high risk of blood clots..they will re-evaulate in 4-6 weeks when I have recovered from the heart attack...holy crap..as much as I do not want to be on Tamofxifen, I don't really have another option...My distress level has just gone from a feel sorry for Sandee day to terrified in a short 120 seconds...anyone else been told to go off it for this long a period?? I asked her to schedule me closer to the 4 weeks than the 6 as I need information.
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Sandee I am not sure if this is a help but I have heard that it takes weeks for Tamoxifen to clear our systems.. so maybe jusy maybe that helps as it will cut down on the time you will feel unprotected... i hope so... I read somewhere when you have nbeen on it awhile it can take up to 6 weeks to clear completley.... hang in sweetie... extra hugs!!!!!1
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Sandee ~ try to think of it as just a break ~ I took 2 weeks off when I had surgery and another 2 weeks off to try to rectify some severe side effects when I started. I too flipped a bit and then enjoyed how great I felt during those breaks. I agree with you 4 weeks sounds better than 6 weeks. Just push that appointment so you can go back on. And you really need to make sure your heart and everything are okay and throwing a clot would not be a good thing right now. Hang tough sister we are here for you
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Thanks Tink...Alicia...it does help. Just can't stop crying now....have gone from ' ok...have this beat..can go to work part time. I feel good enough to walk and will be back driving my car in 2 weeks.... to terrified...depressed and really wondering WTF???? I know there are other options but I am not fully post-menopausal yet...I am only 49....not a lot of options out there....May is going to be a helluva long month....will try to look at it as a nice break instead of an instant cancer invite...which is how it feels to me right now...thanks ladies
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Sandee I know that this scares you so I don't blame you for pushing for the 4 weeks, but like Alicia said just enjoy the break for now. Once you are back on it will protect you again. Remember your 24 hour rule.
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Shwrry,,,right,,,thus will all look bettter tomorrow...two fewer pills to take....don't want another blood clot for sure....just really scared.....between having to wait a week for the cardio clinic and being told what I can and cannot do for exercize, having to wait for a mammogram and now having to wait for an oncology appointment and then do some brand new treatment....god ,,,,,i feel so done in right now....
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Sandee - Oh sweetie - not another scare. Just what you don't need. Insist on moving the appt up so you can get some answers. But like Tink said, it takes weeks to get out of your system. Enjoy the break. I know this is easier said than done, but try to relax and breath. This damn disease keeps us on our toes all the time and trying to figure out what to do next.
(((HUGS)))
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Thanks Jo....yeah..completely overwhelmed right now...I am about a 12 on a scale of 1-10 but tomorrow is another day....need to let this settle in my mind and not let it stress me....the call to the cardio clinic started me off this am....the receptionist will not be the person I am dealing with so I just have to remind myself of that fact....she is the gatekeeper not the support person...just not the best way to start back to work...felt supported and then last week, felt like the rug had been yanked ...not deliberately but have to deal with it ....just too much right now...Thanks fr the hug Jo
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