Bottle o Tamoxifen
Comments
-
GoKale- if your dr was talking about not doing the genetic testing being irresponsible then he likely meant testing to see if you have any genetic mutations that put you at higher risk. Those mutations have a 50:50 chance of being passed down to a daughter or a son provided their father doesn’t have the gene too. A positive result on the testing does not guarantee you will develop cancer, nor does it give you any idea when it will happen. But it does give you the odds which is valuable information. Perhaps the gene is present in your family line but most everyone has fallen on the good side of the odds. Or you have a family that doesn’t have many females on one side or both sides. Males can have the mutation and pass it down to their daughters and/or sons too, and let’s not forget that men can get BC as well,
They have to start with you vs your daughter on the testing because you’re the one with the cancer diagnosis. If you test positive then your daughter and/or any sons would likely be tested as well as all your brothers and sisters and possibly cousins. If you test positive my guess would be you'd be high risk for recurrence/new primary but not necessarily for mets based on genetic testing alone. The next question was would be what would you do with the information? Odds are at the very least your MO would be hypervigilant with testing/scans to catch anything that comes, early. It may also be recommended to take some prophylactic steps and/or stay on anti-hormonals longer if you’re ER+. I hope this helps!
0 -
ThreeC - I love it!!! That poor guy was definitely not prepared for that. I’ll bet he thinks twice before ever assuming the person he’s calling has no clue about what they take, why they take it, and interactions.
You know, I think it would be fun if maybe a bunch of us tried to get together in person sometime. I’d love to meet you guys in person. Maybe we could organize something once or twice a year somewhere and move the location each year to make it easier for everyone to go to at least 1 get together. We wouldn’t necessarily have to rent out conference facilities or anything (i don’t think) but if we did maybe we could all pitch in, or we could arrange meet & greets/meals at area restaurants that could accommodate us. We could do it over the course of a long weekend or something. Has anyone done that before to anyone’s knowledge? What do you all think about the idea? I’m just thinking out loud here...
0 -
TaRenee...oh the leg cramps! I swear I would rather deal with the monster that lived under my bed when I was a kid, or the ghoul that lurked behind my almost closed closet doors. Because in all those years of childhood terror NOTHING woke me at night like these frikkin leg cramps do! Holy mother of...! And they come in clusters. Like an earthquake and aftershocks. I'll have one massive leg spasm and then I lay there knowing that it's going to come again, all I have to do is move the wrong way, roll over too fast and ...aaaggh, yowww, aaaahhhhh!
I HURL myself out of bed and try to walk it off. If it is a lower leg cramp in the ankle / calf area and my foot is pointed off in some backward angle, sometimes I almost fall down trying to step on a foot that is twisted and gnarled into some weird shape. If I can I limp around doing the herky-jerky, walk it off, walk it off. When I do get back into bed there is no sleeping, there is just waiting because it always comes back.
I have not found anything that helps. I will try to guzzle down some water. Heard claims that it's dehydration that causes the cramps. I have no idea. If it's about liquid then wine should work. But drinking out of the bottle, in the dark, while lurching crazily around the furniture is a good way to wreck the carpet. Or only just drink white, much safer in those circumstances. Good luck TaRenee, they are brutal and so, so painful!
0 -
Egads - thank you for the link, I couldn't find much on it other than stated as a myth.
LEG CRAMPS: found this posted on this forum awhile ago by another member (Professor50) and thought I would post it for all suffering.
"For those who are struggling with muscle cramps through the night, I have a somewhat wacky suggestion. (I was having trouble with cramps especially in my feet and calves). This may sound completely crazy but it has worked for me and there is a tiny bit of scientific evidence in support of this solution. Basically I put a bar of Irish Spring soap in the bed down by my feet. It really seems to do the trick. Also, if it feels like it has become less effective, I scratch up the surface of the soap. It may just be the placebo effect but it has really worked for me. It is cheap and worth a try."
0 -
leg cramps are the worst! Sometimes i walk like I am 110 years old. Crazy. Joint pain is horrible also. I have not found anything that helps, I figured I would try the soap thing, made my room smell fresh but didn't help the cramps. A warm bath before bed helps some
Meeting up would be fun. I honestly don't think I could of gotten through all this without you ladies.
Funny about the insurance thing! When I had to switch Insurance carriers in the middle of treatment last year I got a call asking why I had so many meds to take and so many dr appointments. When I told them that I didn't have to disclose what was wrong they threatened to cancel my Insurance. I told themto go ahead and try.
I use an app to keep track of my meds and so forth. Can't remember the name of it. Also I go to Mayo Clinic and they have an on line portal that has everything updated and available to me.
0 -
Vamp - You're welcome. IMHO it does lean onto the myth-y side as our bodies generally correct our PH all on its own. For some with certain issues I guess it does work. I tried the Irish Spring trick once and it did nothing, but I have a few friends who swear by it, so yeah, worth a shot for sure!
Runor & TaRenne - I had the same issues with the leg spasms, felt like my calves and feet were possessed, and once watched my calf involuntarily flip. It took a few weeks for the muscle strain to stop hurting. Runor I used to do the same thing, JUMP out of bed quick and hobble around hoping it would go away, only to have it come right back when I got back into bed. I know I keep on about this but the only thing that stopped it was doing weight bearing squats and lunges (like 3 sets of 10 at least 3 times a week). It really works. If I take a break from the gym they come roaring back with a vengeance. It's also helped with the sore feet issue, rarely have a problem anymore. Worth a shot.
0 -
I’ve tried this trick before to get a Charlie horse to stop and it worked... raise your foot up, point your toes straight up, wrap an exercise band/necktie/bathrobe tie/etc across the bottom of the foot and hold each end in your hands. Lay back and extend your leg straight while pulling back on the ends of the exerciseband/necktie/bathrobe tie/etc. hold for 10 seconds, bend leg at the knee and repeat.
0 -
I've started taking a Magnesium supplement to combat night time Charley horses - so far it does seem to be working - but it's only been a few days.
0 -
Tlfrank, I was plagued by leg cramps too. Not much to add but I do soak in epsiolm salts as a preventative. If it is really bad, like the one I had the other night (like yours hurt all the way up to my butt) I run a warm bath and soaked in them, even if it iis 2:30 a.m, because sometimes they will not stop even with stretching and massage.
Here’s the weird part. After the soak, I stretch it as little as possible when getting out of tub and I make suremy foot does not touch cold tile as I get out. If it does, it may trigger it again. I slide on a warm sock and try to go back to bed. So annoying! I had one so bad last week that my ankle and behind my knee were sore for about three days. My toes don’t curl under, they spread apart and splay out. My foot spasms and turns at the ankle. If mild, I can make the stop by standing and or pulling my toes up.
Makes me crazy.
0 -
The doctor is Los Angeles top breast cancer surgeon named Dr. Kristi Funk...she took a year and researched everything out there for how to decrease chances of getting breast cancer and recurrence and then laid it all out if easy to understand and follow suggestions in her book. I went to a talk she gave and she talked about how she was blown away by the research that showed how important diet was for BC (and all cancers) and completely changed her and her family's eating as a result. IMO the info in this book is essential for all women!
0 -
I believe that my mutated breast cells came from my puberty years (growing breast cells) when my parents had a horrible company names Chem-Lawn come weekly and spray our grass and home with herbicides and insecticides-- then we would spend hours playing in the grass and thereby ingesting this hormone-distrusting poison. Roundup (glysophate) is one of these poisons and still sprayed all over American fields, schoolyards and home yards. The EU has banned this chemical b/c cancer causation and we should too!
0 -
diet and exercise are important for all illnesses. But still we have people who have always done good diet/exercise still get cancer. While important, it doesn't guarantee no stage 4.
0 -
As it says in the risk factor discussion on the main site here, the two greatest risk factors for BC are gender and age. We can't do anything about those so my main focus is on having a healthy diet and getting exercise.
0 -
Hey ladies,
Seen my oncologist today. He doesn't agree with the radiologist that I have a blood clot. My heart rate wasn't elevated and the d dimer test was negative and he wouldn't call the spot on the CT scan a clot. He stated that the radiologist that works for the hospital wouldn't either. So I guess the chest pain, back pain, difficulty breathing, shortness of breath was and is all in my head? He ordered another d dimer test and wants another CT done. The hospitals radiologist can't override someone else's diagnosis. Sooo if it's not a clot what is the spot on the CT and why can I breath better now that I am off the Tamoxifen and on Blood thinners? He also wants me to start back on the Tamoxifen. Said they wouldn't cancel each other out so it was safe to do so. Do doctors get a kickback on this drug? He seems to blame everything on the radiation. My fatigue, that was all Rads, the lung problem that's Rads too. Couldn't be the Tamoxifen, my arse it's not the drug. I feel so much better today than I have in over two weeks! Feeling very frustrated right now.
0 -
Vamp,
That is frustrating. Any thought to a second opinion with a pulmonologist? That’s who you would see for radiation damage or a clot in the lung, correct?
Just a thought. Your oncologist could be great and completely right. I would just be annoyed with mixed opinions coming from doctors. I hardly think you had a panic attack! I would also think any new X-rays would show a clot resolving with blood thinners. I would want an expert to look at all the tests
Hang in there.
0 -
Hi everyone. Today was a rough one. Two nights of leg cramps beyond belief. Then at work today while I was teaching the world went white and I had to hold on to the table to keep from falling and passing out. That happened twice. At the end of class I went to the office to tell them what was going on and got sent home. Called my PCP and got seen within an hour. Blood work and eeg and neurologist tests. BP was low. Like even lower than usual (I’m on BP meds for high BP, but this was pretty low). Turns out I’m orthostatic. BP changed from laying down to sitting to standing. It could be dehydration, Tho I don’t see how. I drink water all day. Waiting for blood work today but come back tomorrow for more information. And I’m exhausted. Bleh.
Moral of the story... don’t stop drinking. Stay well hydrated.
0 -
Hi to all!
Vampeyes- Glad to hear you continue to feel better. Did a little reading on your situation & all your symptoms pointed to a blood clot. Then I read about the d dimmer test. One site stated that the test couldn't prove you had a clot, it only could disprove you had one. As I was scratching my head on that statement, I read that the residue in the blood from a blood clot starts to disintegrate and may only show up in small amounts.
TaRenee- I'm having the same type "Spells". The dizziness is horrible. Last night I was reading on the couch, sat up to get a drink and was staggering. I ended up going to bed and "sleeping" it off. I been having them for a couple of weeks. I've got an appointment with my Breast Surgeon's PA next week and my MO the week after. Hopefully they will be able to help. My bladder won't last for Five or more years if I keep drowning it. Hope you have a better day tomorrow. Let us know how you are doing.
Anyone else having dizziness? If so- have you found any solutions
0 -
vampeyes- did the hospital radiologist review the actual CT pics from the other day /read the radiology reportand had a list of your symptoms to go with it? If not, your MO is speaking out of turn and banking on the stats that while blood clots can be caused by tamoxifen they are not as common as say hot flashes and joint pain. Or perhaps he's trying to cover his own ass because he never called you back when you called to report your symptoms... A new CT may or may not show anything since you've already started therapy. You have a perfectly valid CT already. That should be enough as it is your baseline diagnostic scan. Additional scan after treatment starts just shows any improvements. And your heart rate does not have to be elevated if you have a clot in the lungs. Small clots won't usually cause an increase in heart rate like a large clot blocking the main artery into your lungs would. Both types of clots are dangerous...one is just more immediately dangerous than the other. Plus as you've stated you already are feeling better since starting the lovenox. And yes you can start to feel better within just a couple hours of starting blood thinning therapy as i know first hand.
I would have your primary care provider read the radiology report from the CT you already have and let him give you a second opinion. He can even call the radiologist who read the CT originally and talk 1 on 1 with him. Again, make sure your primary doc knows what your symptoms were/are and that they've been resolving since starting therapy.
Additionally, here is the section on blood clots from tamoxifen on the American cancer society web page (I realize you're in UK but I can't imagine the UK equivalent would state anything significantly different). It clearly states that individuals who have a history of blood clots generally should not take tamoxifen. I'll tack on 'especially if you're on tamoxifen when the first one happens and is caused by the tamoxifen.'
0 -
HoneyBadger, you are right I should see a lung specialist if there is something there, there must be something on the scan for the first radiologist to say it's a clot. I will have to wait now till next Wednesday to see this other oncologist and go from there.I honestly don't want to take the Tamoxifen. I feel so good right now, other than this darn sore throat I have. The mixed opinions and extra tests that are upsetting. Another CT - can all this dye be safe for me?
Plus tomorrows radioactive stuff. Oh boy I will glow in the dark with my new solar light! hahaDizziness - ladies I feel bad for you to have this going on. A friend had it for months, after tons of tests there was no rhyme or reason for it. It finally went away for him, but he would walk on an angle almost. Another friend still has it and finds driving of all things makes her feel better. Tons of tests for her to and no answers as to why it is happening. Me I get them when I stand up to fast and they only last 30-60 seconds thankfully. I wish I had some helpful tips to help you out.
Lula thank you for the information. I am not sure what he did, he left and came back saying all this stuff. He doesn't even have a file on me - seems strange. Apparently he had no idea I called Friday, I was so angry about that and he knew it. When I called London to update them again on all that happened the nurse told me to go with what the ER doctor has stated. Still doing the shots. My oncologist wants me back on Tamoxifen, this seems odd. You would think the two would counteract each other, I am curious to see how I would feel if I did take it, could it be just a horrible Tamoxifen SE? This is so frustrating.
0 -
Vampeyes- I know you’re frustrated, I would be too. Shoot-im frustrated for you and there’s an entire ocean between us. 😤😠😭
As far as whether to take the tamoxifen/follow nurse’s advice or dr’s at this point with all you currently now know, look at it this way... clots in the lungs can kill you today, not taking the tamoxifen til all this is sorted out will not. And in the big scheme of things, a little while off tamoxifen likely won’t make any difference at all. Are you pre or post menopausal?
0 -
ladies please do not drink just water to stay hydrated. Water passes through you quickly. Try Gatorade or powerade.
0 -
shelabela...sorry but I disagree. Water does hydrate you. I don't know what you mean by it passes through you quickly. Gatorade or the like has more electrolytes in it but you don't always need them. It also has a lot of calories and sugar in it. Good old H20 will do the trick most of the time. Good luck to all.
0 -
Gatorade/Powerade has as many calories as some sodas. Unless you’re dehydrated from vomiting/diarrhea, physical exertion where you’re sweating profusely for long periods of time (like a Florida Gator football player playing in the hot summer training season), or you just can’t consume anywhere near the daily suggested fluid intake, there is no need to drink a Gatorade or Powerade. Might as well drink that soda that tastes far better than a gator/Powerade. If you’re looking to have added nutrients in your water, there are several brands out now that have added vitamins. Many of the name brands of bottled water are re-mineralized after purification so you get those minerals when you drink those brands (the drink companies don’t do it for the health reasons, though- they do it to make the water taste better). If you’ve ever wondered why brands of bottled waters can taste so different, this is why. And there are a slew of different supplements that you can mix into your water to get added nutrients with every glass you drink.
0 -
8 diy recipes that are cheap, cheerful and good for rehydration after workouts, gastro issues etc...
https://www.positivehealthwellness.com/recipes/8-natural-rehydrating-drinks-make-home/
OTC products tend to lean heavily on sugar or artificial sweeteners, and often taste like the backside of Satan.
0 -
Vamp- count me in on the ‘frusrated for you’ crew! Actually the idea of having the two docs confer is a great one. Could you make that request? Or demand it if your latest round of tests put forth more questions than answers? As for the tamoxifen, I’m with the ‘a few more days ain’t gonna hurt’ camp.
Hoping you get peace of mind immediately, if not sooner!
0 -
I've always had dizzy spells, but really having problems at the moment. I did a home blood pressure reading this morning, it was 87/65, so I guess that explains why I have to hang on to the furniture when I stand up.
A few years ago I was advised to use more salt to keep my blood pressure up, they said it's fine to increase your intake if your BP is low. They suggested making a drink with bouillon powder to increase both salt and fluids, that's worked for me in the past.
0 -
Green tea is also great to dehydrate with. I don't like it warm so I drink it as ice tea with lots of ice.
0 -
Dizzy - thank you for posting! I get very occasional bouts and always wrote it off to ear problems. The next time I’m going to grab my BP monitor and check it out.
0 -
Yikes! Please don't drink the junk-food drinks filled with sugar which feeds cancer. Water is the best at hydrating you without side effects. Drink when you are thirsty as that is the body's way to warn you that you are getting dehydrated. Check out Dr. Greger videos on this subject:
https://nutritionfacts.org/video/coconut-water-for...
https://nutritionfacts.org/video/are-sports-drinks...
0 -
Vampeyes- Regarding scans..IMO we should be very mindful of too much radiation as radiation itself can cause cancer and it's cumulative so it all adds up over a lifetime. I try and stay clear of CT scans (lots of radiation) and even X-rays (less but still something) unless it's the only option. MRIs and Ultrasounds are not radiation and safe -- that said, for cancer screenings some MRI require dye (called with contrast) which my oncologist told me at last appointment that there is some research showing that the dyes can end up in the brain to cause havoc later. But even with that, MRI w/contrast likely safer in the long run than CT scan.
0
