Bottle o Tamoxifen
Comments
-
meg- The Haunted Trees in the Wizard of Oz were what really scared me, as well as the flying monkeys. And when I was doing IVF, they had a heartbreaking time wasting way of doing the blood tests, for a woman who was already ticking like a bomb with a biological clock and tests that have to be taken on the 3rd, 7th, 10th days of the cycle, they did the 7th and not the 10, then I had to wait a month for the 10th day to come around again, and then another month to get to the 3rd. I lost nearly half a precious year for this stupidity and ended up having my son by surrogate when I was 48- and not to mention I started trying at 45. My gal pal also had this nonsense when she was trying to sort out digestive troubles. Its just a common horror from people in the health care "business" who treat their jobs like they work at McDonalds, or really like they work at the DMV. I once sat on a bus behind two women who worked in doctor's offices, and what they had to say was utterly horrific.
kookiesmom- yeah but the alien baby might have special powers
When are you scheduled to see the OB GYN or whoever about the ovary? Normally I wouldn't worry about ovary pain, but since you are in some kind of ovary issue, best to call the doc and get an answer about whether you should get seen immediately. Glad my situation reminded you to ask for Vit D test- and hope it reminds you that you have to stand up for your care too! Pain- is your body trying to tell you something. Speak up!!!!Allie- the flaxseeds are about constipation, right? The usual stuff doesn't work for you? Upping your apples and bananas and stuff?
Thanks all for the handholding with this stupid Vit D thing. For those who don't understand why I am making such a fuss about it, Vit D levels have been shown to be indicative of breast cancer occuring or re-occuring. Can't be too high or too low, there's a "sweet spot" level, so i have to get my level first before I start gobbling supplements. (And the director of Breast Cancer at Sloan Kettering is the one who told us about this, and its Sloan Kettering that just F'ed up my test. Fun fun fun.)
millieD- I had read also that there was a drug interaction with benadryl, but my ONC cleared me to use it because I use it very rarely. Your ONC not mentioning it alone wouldn't make me run for another ONC but you speak of a lot of problems dealing with your ONC and trusting us more than your ONC... so maybe you should look for another one. I mean, we're good here but... we're not oncologists and this is your life we're talking about...
kari- he still hasn't answered me about the Vitamin D3 test. He's only requested that his bitch phone answerer make the appointment, but 3 hours later there's no message from her either. Since I know it's OK with him, I'll just write back at the end of the day that I hadn't heard from her but I'll plan to see him at 1pm, and invite him to lunch as well. And I'll get my own Vitamin D3 test. Love my ONC, just have to get past the incompetents who work for him.
0 -
Kari - good link, thank you. And I agree with MilleD, I get more relevant info from this board than I do from some of my doctors, but this is particularly aggregious and at the moment I am really pissed at my onc. Diphenhydramine (Diphen) is the ingredient in Benadryl that "moderately" inhibits tamox's efficacy and apparently it's in a lot of products - see the link below. I suggest that before you take anything, find out if it has any of the ingredients from the list below (second link). I would also put together a list (and I'm going to do this) of all the supps / medications that you are currently taking or may take (e.g. seasonal allergy med) and email it to your onc and specifically ask if anything on the list is a tamox inhibitor. This is bull***.
http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682539.html
http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp
0 -
Here is my Readers Digest Condensed version of the ovary - had an alien baby kicking me, went to gyno, he was stumped & had me get a TVUS which showed "Bunches of Cysts" in my right ovary and gyno immediately told me I needed the CA-125 test and could have my ovary removed to get rid of cysts. I thought was a bit drastic for a 1st step! Next week I go to onc. with the official US report in hand hopefully. She will do the CA125 test and then I think I will get a referral to an Onc. gyn. I don't want to take a wait and see approach on this one. I will call the gyno about the pain in the meantime. Can the cysts or ovaries burst? Or do the cysts just melt away? Thanks for the input!
0 -
MillieD - CA 125 is a protein that is a so-called tumor marker or biomarker, which is a substance that is found in greater concentration in tumor cells than in other cells of the body. In particular, CA 125 is present in greater concentration in ovarian cancer cells than in other cells. Its function is not currently understood. CA stands for cancer antigen. & VD is Vitamin D.
j414 - great link!! I have a prescription for Pepcid, but am worried about taking it now because of the Tagamet on the list. I will have to ask my doc about it. Used to take Tum's everyday, for calcium benefits too...have another prescription at home for something else...I need to check those labels and do some research!!
Rachel, going thru IVF sounds very hard emotionally and physically, had a friend try and it never worked. Her hubby divorced her over it! OK, just looked at the clock 11am here so 2pm there...waiting to see what your doc says about the Vit D...
kookiesmom, good idea on not taking the wait and see approach...which is what I used to do!
0 -
kari- IVF sucks dog doo, but of course compared to SFBC its a breeze. Very similar in terms of the unnecessary torture inflicted by callous and incompetent medical staff, and its just the life you want to create that's on the line, not trying to keep one you already have. No wicked witch writing smoke threats in the sky and all that...
So it's 3pm here. As you saw around 9am I got a single response from my ONC about the appt change in January, and he copied his bitch phone answerer. Nothing about my test results in any way. Then I heard nothing more. Bitch phone answerer- (now I will call this sort of creature BPA) clearly has a bug up her arse. So I wrote him a reply to all on his email at around 1pm- more than 3 hours later and this BPA can't be bothered to change an appt.... i wrote one line nicely suggesting a 1pm appt time and then kept an eye on the online patient information for the cancer center. No reply from the BPA, but I see I have a 130pm appt now in January.
Prioritized the issues, used my resources to reorganize, stayed positive, I am driving this car, avoiding road hazards, re-routing, keeping my destination in mind.
Tomorrow I will write to him again about the Vit D results mentioning that I can get the test at my GP on Monday.
Once the Vit D results are in, I will ask him - and possibly the GP as well- about all results. Hmmm maybe I will make copies of these results and leave at the GP's office with a question.
I tell myself this must all be really small stuff, if there was something serious going on I have to believe my ONC would be all over it. Anyway, I am getting it done as fast as it can be.
Thanks for asking
0 -
Oh Oh Oh!!! I didn't see a fax- I had asked for ALL the test results to be FAXED. Instead I got the Vit D results at 1120am. (BPA doing all she can to screw things up while doing the absolute minimum my ONC clearly must have asked her to do.) So my Vit D results are:
TEST: VIT D 1-25
UNITS: pg/ml
REF: 22-67
mine is 49
and he wrote on it "Normal Value" and circled it.
So... I did the right thing by NOT taking the supplement. I have to go dig up the info and studies and stuff, but that sounds familiar.
Nyah nyah Allie I beat ya in the Vit D3 results race.
and now I have to get the stupid flu shot anyway!
jeez...
0 -
Okay, I'm much calmer now. Allergies (and my allergy med is on the list - I've been popping them the last 2 days - thank you Kari!) + PMS + worked till 1:00 a.m. last night put me in one heck of a mood.
Patty K - sexty???? I would have never thought - you look fantastic!!!
Helena - your Tamox predicament is ridiculous and it would drive me crazy - I would be obsessed w/ whether I did in fact cut the pill precisely in half (yep, just what I need).
Rachel - Did not know about the connection b/w D3 and BC - have an appointment with my gyno in three weeks, she and I will have a lot to talk about. And I'm getting all of my doctors email addresses -it's direct (bypass the "phone" peeps) and effective and it's a written record of our communications - another great idea from the Tamox gals that I should have thought of six months ago! It's absurd that you had to go through all this stuff since last night, but you handled the stress well - working out twice last night was a great thing to do - for body and mind. I have to learn to channel it and chill - I'm not very disciplined in that respect. Incidentally, I had a very negative experience with someone in the hospital and when I complained (and did I complain!) the explanation (or excuse) was that she worked for the hospital, not the doctor (the doc's office is in the hospital)- so I went straight to hospital administration . . .
Rgiuff - thank you for the analysis. I googled the abbreviations that Rachel posted, but couldn't tie it up to figure out what it all meant. It will help when I get my own results and my doctor forgets to explain them.
Kookiesmom - I took the CA-125 blood test 5 months ago (paternal aunt diagnosed w/ OC at 26) and I also took a TV sono (both of which I will be doing 2x a year going forward) and my doc saw a couple of cysts on both ovaries. I had to go back for a TV sono once a month for three consecutive months (so annoying) and by the third month they just dissoloved. The radiologist repeatedly said that even w/ my crappy family history, OC is rare (so she wasn't really concerned), but she insisted on the consecutive TV sonos, just to be on the safe side. Take the blood test - it will give you peace of mind.
Back to work!
0 -
Mrs. B is something the kids call me at the elementary school I work for.
Boo Hoo Top chef was a rerun.
Tomorrow "survivor appt". I'll let you know what it is.
0 -
Rachel, great news on the normal D level!!
Oh PattyB, earlier I thought if your last name is Baker how funny would that be, Patty Kaye Baker....Now I keep singing that nursery rhyme in my head!
Good, Top Chef was a rerun! YAY!!
0 -
Asked about the low TOT PROT and Albumin, he said:
"The total protein and the albumin are not significant. Eat more meat! Everything else in the blood work looks great!"
Eat more meat? Really? Ooookey dokey!
0 -
Hey Rose, I am sorry I missed your excellent interpretation of my results. That was very kind of you, thank you!
0 -
J414 - precisely!!!! Which is what I try to do with the cutting - seeing Onc in a couple of weeks and will get new script.
Rachel - glad all tests back and good results. YAY.
Kari - well of course ... snap! Hugs.
Off to work today and last day of school for DDs - end of term 3 and 2 weeks off. No more mad rushes in the morning to get them to school. Phew.
Alien babies, special powers, birth certificate, EVOO - love this place.
Have a great day/nite everyone.
soft hugs
Helena
0 -
Rachel, what's for dinner? A big honkin steak? haha
Have a WONDERFUL day Helena and enjoy the 2 week break by sleepin in!!
0 -
Rachel--eat good beef--grass-fed. BIG difference.
On a sad note (ok not a real kind of sad)--my formerly angelic dog ate one of my new Cole Haan sandal. (Oh yes he did). Sigh. I really loved them. And he's too cute to say too mad at for long. I may take it in to a shoe guy just to have him laugh at me when I ask if anything can be done. Or I may run and get the cute pair of shoes I saw the other day and passed by...frugality be damned!
0 -
Not too sure about the weight loss on Tamoxifen. I gained 15 pounds. Doctor told me to stay away from any foods that are white. Bread, rice, pasta, milk and change to green foods and EXERCISE daily.
Tamoxifen makes just want to snack, snack and snack.
0 -
tamoxifen gave me an insatiable appetite (finished my 5 years a year ago), so I had to step up my exercise and change my eating habits (weight watchers helps with that--it's all about portion control!)
Anne
0 -
Reminds me of an old line from laugh in and Flip Wilson, paraphrased:
Tamoxifen made me do it!
0 -
j414, yep, sexty it is, and thank you. And by the way, thanks for posting that link about drug interactions and Tamoxifen. Looks like I will have to give up my little sleeping aid, Trazodone, that my GP prescribed right before my mastectomy -- I just couldn't shut my brain off around then, and I am having good luck with only one pill. Geez, I hate that.
I'm now officially Now on Tamoxifen (NOT). Took the first one last night. So far, so good. My stomach's been a little upset, but that could be because I got a fill today and for the first time, it was quite painful (now at 780 ccs). Ended up taking a muscle relaxer (which I always do 30 minutes before fills at Drs. suggestion), then Tylenol, then Percocet. Finally, some relief, but I was hoping not to have to take Percocet until later. The plastic surgeon says I'll probably need 5 or 6 more fills. UGH!
Allie, couldn't resist this, but at least your formerly angelic dog has great taste! or do the Cole Haans just taste great?
Weight gain on Tamox??? please say it ain't so. I've already been indulging myself since around March and was really thinking about signing up for a health club - I really want to take a Zumba class. Now with the fill pain, not sure I can even stand getting out of recliner, let alone gyrating my body around like a woman possessed.
0 -
Okay, so I barely posted the posted the past two days and now my head is spinning trying to catch up on everything.
About blood work, what is anion gap? Mine is low, normal is 7-15 and mine is 5, not real low, but my bulirubin is low as well, again not too low, but low. 0.3-1.3 and mine is 0.2.
Have not had a Vit D test done, but doctor told me to take Vit D since I had my ooph.
Had a bad day at work. I wish I could vent,but I can't. After work I had to attend a class for Sunday school teachers. Came home and everyone in bed, so more P&Q!!!! I should be paying my bills or folding laundry, but I felt like being lazy.
Someone asked about foot cramps, yes I have had extremely bad toe cramps. My big toe, or the next toe have have cramped up and stood staight up. I could not do anything to get rid of the cramp. I have also had consider leg pain from being on my feet all day and walking around the school, so not sure if related to tamox or just from too much on my feet.
One symptom I have had is "tamoxibrain" I have had poor memory and even forgetting the appropriate word. I blame it on tamoxifen, but not so sure, it could just be stress!
I hope everyone has a great FRIDAY!!!!!!!
0 -
Phew .. white wine wasn't mentioned ...
Friday avo here ... home from work.
No weight gain here from Tamoxifen and I'm 6 months down the track. I do eat well (most of the time) and exercise whenever I can. Do have tamoxi brain though but I think that is because we have so much more to think about and focus on now. My DD called out for toilet paper last night and I came down the hall and noticed a message on the computer, sat down and started reading - forgot all about the toilet paper. Really pathetic example but talk about short term memory - like 5 seconds and I forgot. Sigh.
Better get DDs off bus.
0 -
Helena,
Your 'computer distraction' cracked me up! Glad I'm not the only one. THe other day I asked my son how long he played basketball at school and he said "mom, are you okay? You just asked me that!" I didn't really get 'chemobrain' so this 'tamoxibrain' is throwing me off. But as others have said, hard to know if it is just distraction (I'm having a revision on my exchange surgery on Tuesday, so I am distracted). Fun eh?
Happy weekend to all.
Alice0 -
I haven't had the weight gain on tamox--if anything I think a bit of loss. Hard to tell as I have been eating better. I have not had the munchies though. One thing that helps with that I think is green tea. I have some every day and find (and have read) it acts a bit as an appetite suppressant. So you might try that. Also really reduce your sugar (except fruit) --I think sugar is self-fulfilling. The more you have, the more you want.
0 -
That's true on the sugar Allie! It is like that for me. I try and really limit the amount, but sometimes...I just gotta have a bit!! Couldn't your doggie eat a rubber flip flop? WOW he has really good taste!
Helena, OMG, talk about a crack up!! Your poor DD, did she have to call for you again as you were at your computer? poor little thing...I swear I've been doing stuff like that A LOT!! I think I'm getting Alzheimer's or something...gosh I hope not!!
And Alice, funny about your DS too, asking if you were ok! I ask something, then I don't listen to the answer, then I realize I didn't listen and am embarrassed when I have to ask again. FOCUS girl FOCUS!!
PattyB, ouch!! and you made me laugh about the Zumba!
Ok, work calls....check back later gators!
0 -
About the muscle cramps.....I can't blame the Tamox since I have been off of it for almost a week for surgery and will be off for 3 weeks after. I have been getting more cramps than usual this week UGH. Bummer I can't blame tamox.
Hope everyone has a great weekend.
Diane
0 -
5.00am in the morning here - WT!! Yawn.
Kari - people talk to me and I just zone out. Mind you it is usually my DDs. Yes, poor ones. You know when I sat down to my computer the other other nite when my DD wanted the TP she did call out again and you know I thought "what does she want now, I just sat down!!! Yikes.
Alice - why are you having a revision if you don't mind me asking? I need one too but putting it off for as long as I can. Now that's a distraction!!!!
Better go back to bed as my DH brings me a cup of tea in bed in the morning and I down my vitamin D3 drops and my little 10mg friend Tam, if I don't get back in there I won't get room service. Hey.... it's my little bit of luxury and I'm sticking to it.
Not doubt see you all soon.
soft sleepy hugs
Helena
0 -
Been on Tamoxifen for a little over 3 years now. 6 months ago I started having bleeding after nothing for the last 2.5 years. Thought maybe periods were just coming back a little. Been bleeding every day now for past 90 days. I am at my wits end. Endo biopsy and pap were normal. Thankfully. Come to find out, long term tamoxifen use thickens your endometrium lining and can cause bleeding all the time. Also causes cancer, cataracts, strokes, etc. Not good things...I eat very healthy and exercise. Still have gained 20-25 pounds on this crap. I hate it. Trying to lose weight is almost impossible. My brain in fried, my eyes get worse all the time, horrible constipation, headaches, depressed and just don't feel like myself since I started taking this nasty stuff. God bless all of you that have not had problems. It made me so sick in the beginning it took over a month just to wean myself on it so I could even take it at all. Also had terrible hot flashes all the time. My body does not like this stuff at all. Have been on so many other chats where women have had so many side effects that they just had to stop taking it. I am getting to that point. I'm suppose to have another 2 years of taking it. No way, if all this stuff continues. Who wants to spot and bleed everyday for the next 2 years or get ovarian, or uterine cancer. Not me! Scares me to death! It's like I said to my oncologist in the beginning when he said I had to take tamoxifen. I said, "You cured my breast cancer so far, now you are trying to kill me with uterine cancer!" Neither of us were amused! I know there is a proven method to the madness, just wish it didn't make you feel so bad.
On a bright note...at least I am still here to bitch about it. Good luck ladies.
0 -
Schveetie, so sorry to hear about your troubling tamoxi se's. I've heard that from my aunt and a coworker who both went off of it due to the nasty se's. bummer
Diane, so that's strange about the muscle cramps while off the Tamox! hmmm
Helena, what a sweetie your DH is!!!!!!!!! spoiled girl! haha you DO deserve it!! YAY!
ok, so my DH picked me up for lunch and while at lunch, we ran into a couple we used to live by a couple years ago, Pam and Mike. Pam comes up to our table and says "did you hear about what happened to me? I had a melanoma mole taken off my back in 2003 and thought nothing of it. Well...a few times in my car I would get dizzy or a headache and I went to the doc. It was my eye doc that ordered some tests...I had a brain tumor from the melanoma!! Had gamma knife surgery, then developed a staph infection and they had to do another craniotomy on me and Radiation. I got the runaround at first, went to USC and to other docs but ended up at UCSF and they did the surgery. I've found a great onc locally and she is working with my nutritionist. They told me I was going to die. I've totally changed my diet, try to do the macrobiotic diet, today is the first day in 2 wks I am eating bread...Have your Vitamin D level checked! and they monitor my copper....I'm feeling great now and doing great"
So then my DH tells her about my SFBC and she was like wide eyed..."what?" anyhoo, you get the drift....
SFC is everywhere!!!!!!!!!!! But she is doing great and she does look good. I emailed her asking her what her nutritionist and onc have told her as far as beating recurrence. She said "I think my nutritionist works with breast cancer too".
We had to talk quick as I was on my lunch hour and her DH was sitting there waiting for her to start eating lunch!
0 -
Kari, you're right about SFC being everywhere. At work yesterday I met a young man who had testicular cancer. I wouldn't have known, but I was making a copy of his passport. I commented on the fact that he used to have a beard and a lot more hair. He said he had been really sick and lot all of his hair. I asked him if he had chemo, which lead to a discussion about our cancers. Anyway, he looks pretty darn good now. And he is a climber, so we are going climbing at our local climbing gym tomorrow!
I normally take my tamoxifen at night, before I go to bed, but I almost took a pill this morning when I was taking my vitamins. Argh, not only do I have to worry about missing a pill, now I have to worry about over dosing myself. . .
0 -
Good news today, all is going well as far as the Ons are concerned, Rads Onc blames the fatiuge and sleeplessness on the Tamox, and the Med Onc blames it ont he rads, I told the Med Onc what the Rads Onc said and he got a good laugh. Told me to stay on ambien that it could be either but he still thinks it could be the Rads since my fatigue is improving. He said if not much better in a month to call him if it improved I will see him in 6 months. He also told me that Calcium and Vit D is fine but that there is a lot of evidence that tamox helps build bones. And I have lost 8 pounds since starting on tamox, could be I eat better but am glad I have started losing.
On the chest and arm pain that comes and goes the Rads Onc said it could go on for years he has some patients that are troubled, he said to go slow and light with upper arm exercise, when I am hurting to not push to hard. He said walking is the very best exercise for me, in winter use my exercise bike, I like to sit on the couch next to it you know!!! So many of you are so committed to your exercise you are an inspiration for me! I am still walking 20 minutes at lunch at work but as the weather gets cold I will have to use my bike more.
Going to see friends who are very troubled about their 28 year old daughter who is fighting a very hard battle with Lymphoma. She has gone thru 90 daily chemo treatments plus daily full body radiation only to learn the cancer is still there. She will be preparing for a bone marrow transplant , please keep Suzi on your prayers. Also have a co-workers wife who is 32 who has just been upgraded to stage 4 breast cancer we were diagosed 2 days apart.I feel so truly blessed that I am doing so well. Like Rachal always says SFBC.
Hope all have a great weekend. Rainy and cold here, We are going out with friends Saturday night for a STEAK dinner, thanks Rachal for your stamp of approval, no guilt here.
0 -
SFC is everywhere, but I'm optimistic and really believe we will see a "cure" in the next 10 years.
Today, Texas announced it will invest $3 BILLION over the next 10 years to prevent or cure cancer - it's a groundbreaking amount paralleled only by the National Cancer Institute's budget. It's basically extending an invitation, and the funds, to the smartest people in the world to find a cure.
Add this to the following: In the 1970s Judah Folkman said (something like) "Without sufficient blood, a cancer would not be able to grow any larger than a pinhead".
Everyone thought he was delusional - he was mocked and maligned by his peers for more than 20 years. Then, in the 1990s everyone (and I mean everyone) realized he was right; in 1998 the front page of the NYT dubbed him "the man who would cure cancer" - or at least his theories would.
It's crazy, but the most significant cancer research of all time has happened only over the last 10 years and I believe this coupled with billions of dollars in research money and an Administration hell bent on finding a cure for cancer (and is doubling the NCI's budget to prove it) - will lead us to a cure.
0
