Bottle o Tamoxifen
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jpBCfree, - Oh man I am in trouble. Since April 29th I have had a Chest X-Ray, 2 CT's and a bone scan. When I asked the tech if it was safe to have another CT so close to the last one she stated it was fine just drink lots of water. I am really hoping this is the end of it. I am tired of being poked!
Now that all the tests are done I wait till Wednesday to meet up with an MO - mine thankfully is away so I will see another. Yay! I plan to have my RO look at everything when I see her on the 31st.
As for being off the Tamoxifen I have noticed I don't seem to be as hungry.
Have a great weekend everyone!
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I have been drinking Propel. No sugar but it has flavor. And it also has electrolytes. I just know that I am under doctors orders to drink more water and I thought I was doing good. I average about 8 oz an hour at work. Gonna have to up that I guess.
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LEG cramps: Magnesium supplements and when you feel one start, point your toe towards your body. Your natural instinct is to turn it away which makes it worse. This stops them dead in their tracks for me.
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Vampeyes: I am with you on sick of being poked. I had a CT wed for some lower abdomenal pain and they blew two veins and had to poke me 3 times. Now they saw a spot on my lung and I have to have another one wed.
Also, another thing that helps with the muscle cramps but is not ideal is muscle relaxers. I got a RX and while they did help, I hated taking them because they make me drowsy and dehydrated. But maybe if you take them once in a while?
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Allison - I am so sorry you have to go through another one! God 3 veins! I literally can feel your pain. I keep thinking how much I just want to be healthy and back to normal. Good luck on Wednesday, I am sending positive thoughts the spot on your lung was a dirty machine. 💞
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Thanks, Vampeye! At least I don't have to drink the icky barium stuff this time. Trying to look on the positive side.
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thinking all the positive thoughts I can for you for wed vampeyes.
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Vamp - crossing my fingers for a Wonderful Wednesday. Send me your food, I’ll eat it!
Go into your appointment ‘locked & loaded’!
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Thanks molliefish and Egads007!
Egads, the twins made baked donuts on Sunday, OMG they are sooo good! Please come take them before I eat them all. Thankfully I am still not feeling like I am starving all the time so I just need my willpower to stay away from them. hahaha - willpower I don't have any of that! What is this funny word!
On side note my Tamoxifen pills say Tam on one side and APO on the other, how can I tell what brand I had?
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vampeyes- the manufacturer should be listed on the prescription label of all your prescription meds - usually in small print. If you can’t find it there you can always plug the letters/numbers on the pill with its name into google to get a result. I did that for you and your tablets were manufactured by Apotex.
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Vamps I asked my Med Onc about taking aspirin when I travel and he said it doesn’t do anything. Both my Dad and Brother have had blood clots so I was nervous about getting one on long flights.
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Vamp - Lula is correct with Apotex (of Barry and honey sherman fame). It changed to apotex last year for me too, you could check with your pharmacy to see what brand they switched from.
Donuts...arrrg I’d love em’ but I don’t eat wheat at all....so nice of the twins to make mum a nice treat! Just eat the holes..no calories there lol!
So weird that the aspirin doesn’t do anything, that’s the second time I’ve seen that on the thread (yours and Katies’s experience)...it seems like such a widely recommended product for those at risk, and seems to make great sense.
Too bad donuts weren’t a clot protection med!
Will be there in spirit with you tomorrow! Sending mental donuts
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Good luck tomorrow Allison!!
Egads thanks for the laugh.
ASPIRIN - I don't understand how they say it won't help, so many people are taking aspirin daily for this reason. Some are told by doctors to do so. UGH! Reminds me of this video regarding eating healthy.
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huh. couple months ago my MO told me to start taking baby aspirin. ( I think because of my cholesterol)
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Vampeyes, thanks for the video! That was gold.0
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Hmmm... i have tried twice to post a thorough analysis of aspirin therapy to reduce risk of initial/recurrent DVT/PEs and both times the system ate it. So here's the cliff notes version:
Aspirin reduces risk of recurrent DVT/PE by ~30%
Warfarin, Xarelto/Eliquis, and the injectable Lovenox/Fragmin/heparin/LWH reduce risk of recurrent DVT/PE by ~90%
Aspirin, warfarin, Lovenox/Fragmin/heparin/LWH have significant rates of internal bleeds. This means that statistically, Xarelto/Eliquis offer the maximum efficacy with the least internal bleed risk.
Is it going to help to take an aspirin before a flight? Not much, but it won't hurt (provided no contraindications with your other meds and you're ok with the bleed risk). The best way to prevent a clot while traveling is to stand up and walk a little at least every hour with or without aspirin on board
There are no well controlled studies looking at using aspirin in combination with tamoxifen to reduce DVT/PE risk.
Based on the half life and duration of action of aspirin, a baby aspirin a day likely won't make much difference at all in regard to reducing DVT/PE risk of tamoxifen except for the first few hours after taking it. It would take a significantly higher dose for the benefit to last all day or multiple doses throughout the day. But again, we have no studies to back this up.
If the baby aspirin (81mg) a day benefit only lasts a few hours, why is it used for cardiovascular protection? Ideally, you'd take it in the morning upon waking. The first few hours after we wake up are when we are most at risk for a heart attack because our blood is “stickier" in the morning (I could list out the process on why this happens but this is the cliff notes version) and the increase in adrenaline release in the morning that helps our body wake up and get the day started that can rupture plaques in the blood vessels. So taking the aspirin that will act quickly and last for about 4 hours during the most critical time of the day for heart attack makes sense.
I hope this helps! I hope it posts! 🙂🙃🙂
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Well that went how I expected it to go! I have one radiologist saying it's a blood clot and anther saying nope it's not, the first was a false positive. Soooooo who is correct? They told me to stop the blood thinners. How was it a false positive, "I can't answer that". ARE YOU KIDDING ME??? So what is wrong with me, well lots of things can cause shortness of breath....but it is more than shortness of breast asshat! Now I have a chest cold, so my chest hurts and I am coughing anyway. UGH. Good news, according to these same doctors saying it's not a clot, the bone scan was fine, apparently arthritis. Soooo how do you know it's arthritis and not mets? Are you guessing because my "cancer wasn't aggressive" or can you actually tell. I really, really, really hate the care in this town. Sorry for the rant but I am still confused and frustrated on what to believe. HELL maybe it was the tamoxifen causing all these issues!
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Vampeyes, I am sorry you are getting conflicting information. It is so hard to know who to listen to. I have been following your posts and I am so happy to hear it's arthritis and nothing worse!
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Vampeyes - Though there are still some unanswered questioned concerning what’s actually going on with the shortness of breath......at least the bone scan was clear which is great news within its self. I’m so happy for you. I pray more answers will follow.
Hum
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I have a question for you all. Do any of you have issues with sunburn now that you hadn’t had before? I have always been a beach bum. Grew up on the coast and swam and sailed. I very rarely (if ever) get sunburned. I went to the beach last weekend with some friends. Used sunscreen tho maybe not as much as I should, but I did use it. I have a NASTY burn on one side of my lower legs and the tops of my feet. It has been almost a week and they look almost like sun poisoning. I have NEVER had anything like this before so I was wondering if it could be from the Tamoxifen.
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I’ve been off tamoxifen for 3 weeks now and still have shortness of breath. Who knows
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Sorry for the rant, I am super happy that it's arthritis and not bone mets. With all the different answers, my faith and trust in our medical care system has dwindled.
Lovinggrouches - why have you stopped Tamoxifen?
TaRenee - ouch! Hope that clears up quickly.
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Vampeyes, yay so happy for you! Sorry about the arthritis! Hope you can control that.
As for sunburns, i have found that I am more sensitive to the sun.
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Good morning my fellow friends. I have jumped on the Tamoxifen train with my first dose this morning after breakfast.
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welcome rgoossen, hope you have mild SE from tamo!
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Sorry to take so long to respond. Now that I am through radiation and treatment is no longer the main thing i'm doing with my life (still have herceptin infusions every three weeks but compared to chemo+scalpcooling or radiation it's a breeze), I felt like I needed a little break.
vampeyes, sorry you have had such a tough time. it's so awful when on top of your physical symptoms no one can tell you what's going on. and of course being stresed just makes everything worse. are you able to take anything for the arthritis? if meds help, that might reassure you that's all it is.
i've been on tamoxifen now for about 4 weeks, switched to a morning dose, and am sleeping a bit better. I do notice that the nights I forget to drink the magnesium powder are worse, so I do think it's helping (I take NATURAL CALM magnesium powder at the suggestion of the integrative oncologist). hot flashes still my main problem, which is also contributing to the sleep issues.
also, i posted a while ago about having lost a lot of weight recently and was thinking the herceptin was to blame (thank?). my appetite is definitely coming back on tamoxifen, so we'll see if I can keep it off. trying to exercise more (including some strength training to build muscle).
does anyone have (TMI alert) dry, crusty mucus in their nose from tamoxifen? we also moved last month (same neighborhood, but closer to a park) so I'm wondering if it's something environmental. i have had allergy testing pre-diagnosis and was not allergic to anything at that time.
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Vampeyes, I understand your frustration when you get two reports that say the opposite things. Like, who do you believe? If you skip off thinking nothing is wrong and miss the opportunity to address a medical problem, then you'll be mad later when someone says, too bad you didn't treat it earlier. But if you go with the bad report and press for more tests or bring it up that you're not happy with the answers, you will be branded a hypochondriac cancer patient who thinks everything is more cancer. Of course, the truth is that it COULD be more cancer. Or not. There is no good outcome here other than to lay awake and wonder if you should forget about it or pursue it further. That is how I feel about my last 2 mammograms where they first said, yikes, there is something there and the second opinion of that same mammogram said, meh, forgetaboutit. 4 months later the second mamm said, yup, there is still an architectural distortion clearly in place so we'll just watch it for the next 6 months then mamm again. Oh for pete's sake!!
TaRenee ... I HAD THAT! I was outside with my pants rolled up and the next day my lower legs looked exactly like that. But it wasn't a smooth, all over redness like a usual burn, it was kind of speckly and blotchy. I showed my daughter and she said that's not a burn, that's a rash. And she was right . It looked more like a rash than any burn I've ever had. So I wonder, does tamoxifen make you more prone to sun rash? If there is such a thing? Not a true burn but a photosensitivity? Either way, whatever that is, I got it, red and blotchy looking. No pain or itching. It did not feel burned at all. Just looked like a boiled chicken thigh.
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just looked up tamoxifen and sun. It does say avoid sun exposure and wear SPF 15+ when you are in the sun. Sun sensitivity from a medication is usually caused by a chemical reaction between the sun and the deposits of the medication that make it to the outer tissue layer of your skin. It’s not like a regular sunburn. However, aloe can still soothe it.
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I don’t know what it was Runor. It seemed like sun poisoning. Or a rash. It is just really strange that I only got it on one part of my legs. It hurt like a sunburn. The next morning it actually hurt to walk the first few steps when the skin stretched. Every time I got up from sitting the next day it was painful. And it was super sensitive to heat/sun the next few days. I have never experienced anything like this. It’s been 7 days, and while it is better, it is not gone.
I used SPF 15 but I was in and out of the ocean water all day. (I LOVE what saltwater does for my hair and skin) so maybe I wasn’t applying it often enough. Maybe there was some kind of reaction to the water ant it was just too much. I don’t know.
I spend a LOT of time outdoors during the summer and fall months usually, so I hope it doesn’t repeat
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red332...What does the magnesium do for you while on tamoxifen?
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https://www.youtube.com/watch?v=5Ua-WVg1SsA