Bottle o Tamoxifen
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I am wondering if anyone else is having skin slough off on the inside of your mouth? It seems my mouth is constantly peeling. My lips have felt strange also and I think they must be losing some cells also. Just asking.
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I thought it was just me but I went through the mouth peeling for awhile,now nothing taste right, so I guess it effects everything about us. Sometimes I feel like I am feeling the changes as they happen to my body, if ya know what I mean. I read the post alot but sometimes I just don't have anything in me to say. Take care.
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Always reading the posts but hardly ever post. I've been taking tam since Jan. '08. Had hot flashes for 3-4 months and now nothing other than back stiffness. I am starting to wonder if my body is metabolizing the tam.
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Basha - how was the race? Still flashing here in Virginia...I think this steroid pack is making it worse....breast still swollen and hot...hope this starts working soon
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Joyce - there is a blood test that will show how your body metabolizes tamaxofin. It's called a CYP2D6. Someone on this website posted a link to an article about the testing. I saved the article so I can bring it with me to my next med onc appt. I have pasted some of the information below. I'm sure if you google the subject matter you'll be able to get tons of info.
Thanks to all for the information sharing that happens on this site. I have found the information so useful and productive. Take care, everyone!
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Pharmacogenetic Testing -
Prescription Drug Reaction Tests Now AvailableDo not alter the dosage amount or schedule of any drug you are taking without first consulting your doctor or pharmacist.
Research shows that of all the clinical factors such as age, sex, weight, general health and liver function that alter a patient's response to drugs, genetic factors are the most important. This information becomes even more crucial when you consider the fact that adverse reactions to prescription drugs are killing about 106,000 Americans each year -- roughly three times as many as are killed by automobiles. This makes prescription drugs the fourth leading killer in the U.S., after heart disease, cancer, and stroke.
We currently offer CYP2D6, CYP2C9, and CYP2C19 screens that can help your physician or druggist predict your particular response to more than a quarter of all prescription drugs. These include such important medications as Coumadin (Warfarin), Prozac, Zoloft, Paxil, Effexor, Hydrocodone, Amitriptyline, Claritin, Cyclobenzaprine, Haldol, Metoprolol, Rythmol, Tagamet, Tamoxifen, Valium, Carisoprodol, Diazepam, Dilantin, Premarin, and Prevacid (and the over-the-counter drugs, Allegra, Dytuss and Tusstat). Click here to view a more complete list of drugs processed through these pathways.
Approximately half of all Americans have genetic defects that affect how they process these drugs. There are four different types of metabolizers, and we all fall into one of these categories for the variable pathways in Cytochrome P450 (this Cytochrome is responsible for creating the enzymes that process chemicals of all kinds through our bodies.) The easiest way to understand this is to picture a two lane highway.
- If you are the first type which is the norm, you would be an EXTENSIVE metabolizer. Both lanes of the highway are open and moving. Medications prescribed in normal doses will be metabolized by your body.
- If you are the second type, you would be an INTERMEDIATE metabolizer. This means that one lane of that highway is open and moving and the other lane is not, causing you to metabolize the medications more slowly. In this case you will need a lower dosage, and there is a chance of medications building up in your system causing adverse effects. It is especially importnat to monitor medications if you are in this category.
Intermediate metabolizers through the 2C9 pathway, for instance, have an increased risk of bleeding incidences when taking the common blood thinner Coumadin or Warfarin. For this reason, a recent article in the Journal of the American Medical Association recommends screening for CYP2C9 variants to reduce the risk of adverse drug reactions in these patients.
- The third type is a POOR metabolizer. In this case both lanes of the highway would be stopped. There is a possiblility that alternate routes can be found, but this type of metabolizer is potentially very dangerous, as there is a great chance for the medication to build up in your system making you very sick, or even killing you.
For example, a poor metabolizer of Phenytoin, a common antiepileptic would not be able to process the drug and would actually have an increased rather than decreased risk of seizure if prescribed this drug.
- The fourth type of metabolizer is ULTRA EXTENSIVE. This means you have additional lanes for processing, picture an Indy 500 speedway. In this instance, you literally burn through medications. If you were an Ultra extensive metabolizer through the 2D6 pathway and while in surgery and your doctor gave you codeine as a pain killer, you would receive no pain relief because the codeine would be metabolized so fast that it would have little or no effect on you.
The Testing Process
The process is simple. We send you a blood collection kit in the mail. You can either make an appointment with your doctor or we will provide you with the contact information for a phlebotomist in your area. Blood samples are overnighted to our laboratory and results are typically available in 15 business days.
Currently Available Tests
CYP2D6 (cytochrome P450 2D6) is the best studied of the DMEs and acts on one-fourth of all prescription drugs, including the selective serotonin reuptake inhibitors (SSRI), tricylic antidepressants (TCA), betablockers such as Inderal and the Type 1A antiarrhythmics. Approximately 10% of the population has a slow acting form of this enzyme and 7% a super-fast acting form. Thirty-five percent are carriers of a non-functional 2D6 allele, especially elevating the risk of ADRs when these individuals are taking multiple drugs. Drugs that CYP2D6 metabolizes include Prozac, Zoloft, Paxil, Effexor, Hydrocodone, Amitriptyline, Claritin, Cyclobenzaprine, Haldol, Metoprolol, Rythmol, Tagamet, Tamoxifen, and the over-the-counter diphenylhydramine drugs, Allegra, Dytuss, and Tusstat. CYP2D6 is responsible for activating the pro-drug codeine into its active form and the drug is therefore inactive in CYP2D6 slow metabolizers.
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Hi all!
started with my new job today, and it was a good day...just have to figure out what time of day to take the meds. The blessed thing about the job is that initially I thought that I would only be able to get one day a week, and today I asked the nurse who makes the schedule what days I could work, and she told me I could fill in on the day shift 3 days one week and then 4 days the next....what a neat blessing!
Joan, I take a total of 400mg of CoQ10, I take 200mg in the morning and 200mg in the afternoon...I have read that 100-400 and even more is OK....the BC patients in europe took 390mg along with traditional meds, though some only 100mg....the ones who took 390mg saw dramatic results!
Harley and Deb how are your job ventures going.
well Hope everyone else is doing great, and Deb may have something on the 3 month mark...I am adjusting well and am just about finished with my 3rd bottle.
Hugs,
Amber
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Hi all
Have not been around for a while, finished rads on December 19th. Fought snow and ice storms, but by golly was determined to get it done. Been on Tamoxifen since December 20th, then they put me on low dose effexor for the hot flashes. I gained about 6# through it all and am trying to get back to a good exercise routine. I am wondering if after this long I could still be fatigued or is the tamoxifen cause fatigue. I could fall asleep at 8 pm, and sleep 12 hours and come home in the middle of the day and take a nap. Not every day, just some days. Any thoughts?
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Murphmort - thanks for the info. I go back to the doc in January. I am going to ask for the test.
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Hi amber,
Glad your new job seems to be going well, and the hours suit you.
I am going to a temp. agency tomorrow, to sign up. I'm kind of nervous, because I am a little rusty at MS Word. It's hard to remember where all those different functions are on the tool bar... I have always worked in clerical positions, and I'm more comfortable in those kinds of jobs.
Thanks for thinking of me. I'll let you know what happens tomorrow.
My u/s results are probably in at my drs., and my appt. isn't til next week, on Tues. I'll definitely be sure to update you then.
Harley
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Hi all,
Sharon, Altho we got caught in a buoy, the race was fun. The whole day is fun when from the elite to us every day rowers get together and hang.
I'm going to England next week to see my sis. Think you should all come too. I,ll be offline for 2 weeks.
XXX Basha
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Basha - Have a great trip.....my son and his wife live in Germany...we plan to go in May! He just came back from Afghan in August.
I went to Germany and England in 2000 and had a great time!
I think I am on the steroid high now....and we have a big event at our gym til midnight - so it is a good thing! The foob still seems swollen...but I will give it a couple more days...
Everyone have a good night
Sharon
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Wow...lots of activity here on the train! I've been reading lately but not posting...things have been so busy at school.
Sorry about all the SEs...Stefie, yours sound particularly horrible. My hip pain has gotten worse lately, esp. at night, but I just started sleeping with a pillow between my knees, which seems to help some. Yesterday morning I woke up at 3:30 to go to the bathroom and never got back to sleep...it made for a really long day.
My good news....the miserable heat here has finally broken. Hallelujah! Today will be 78 and sunny. Two days of indoor recess with 60 first and second graders during the rain that ushered in this glorious weather about did me in.
Basha, glad you had fun in your race...you go! Now off to England...sounds wonderful. Enjoy!
Deb and Harley, good luck with the job searches. Harley, using Word is like riding a bike--it'll come back to you. Keep us posted!
Garnetann, I've read that the fatigue after rads can linger for quite awhile--hope you're able to take the nap time you need. I sure could have used a nap yesterday afternoon but had to settle for caffeine. Hope you're feeling better soon.
Work beckons...take care, ladies! I'll be in the Halloween candy car chomping on Indian corn. :-)
Lynn
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Hi all I went to the onc yesterday. In the past year i have lost over 40 lbs and nobody has worried until now. She told me that usually you will gain not lose. I have also been having lower back pain and trouble with constipation. Other things goin on too. So tommorrow I will spend the day at the hospital geting tests run. Ugh but got to do it. Still though wen I think about what some others have gone though I feel humbled. stephanie
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Hey Lynn,
Sorry you are wakeful. I can really relate. Have you tried Ambien? I use it very ocaissionally under stress to avoid the cycle of insomnia. Helps me a lot.
Showing my bc show for the 3rd time at a survivor's day where we get free massage and lots of other nice percs.
Love, Basha
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Basha,
Have a great trip! Are you going to see any races there? This isn't the time of year for the Henley races, is it? And good luck with the show! You are so talented.
Lynn,
Glad to hear from you. At least those 1st and 2nd graders will keep you feeling young....right?
Harley,
Let us know what happens with the u/s. And I agree that Word will come back to you.
I'm expecting to hear something today about the job. I was told on Monday that it looked good but nothing definite.
To all those who are Jewish --L'Shana Tova -- Happy New Year!
Deb
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Hi all,
I'm new here and it's good to see that most of you filling good. I'm 32 years old and I'm from Kosova but had my treatments in Switzerland. I'm using tamoxifen for 1and half year and I gained almost 10 kg.
I have most of the time hot flashed but in general it's not so bad because I'm happy that I'm still alive and feel healthy.
I'm using Zoladex as well for 1 and a half year, can someone please tell me how long Zoladex is used? Did someone had Zoladex and did the period cam back after they stoped taking it?
(sorry for my english
!!!)many thanks
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Alba,
Welcome aboard the Tamoxi-train! Get a good seat, and hang on tight! It can be a bumpy ride, but you'll be just fine.
Good Luck to you! Please keep us posted on your progress!
stephanie,
Thinking of you today, and hoping that your tests will all come out ok.
Virginia,
How are you doing?? Thinking of you...
Amber, Deb, and Lynn,
Thanks for all the warm wishes on the new job front, and the u/s results. I'll be sure to update you on Tues., when I get back from my surgeons. I think I will be able to get an assignment from the temp agency, just as soon as these dr. appts. slow down. The rep. tells me whenever I talk to her that she just placed someone this morning, but that isn't helping me any... But, I don't want to accept an assignment, even temporary, when I know that I won't be able to work right away. Also, dh and I are going to visit some friends in Cocoa Beach, Fl this weekend. We are leaving tomorrow, and will be getting home on Monday.
Hugs to all,
Harley
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Harley - Enjoy the trip to Cocoa Beach...I know it will be hard with the upcoming appts, but I am praying for you....I lived in Satellite Beach when I was in jr high....wow that was a LONG time ago...
Alba - Welcome....
update on the swelling....finished the steroid pack...it actually seemed to help my leg/foot pain, but am still a bit lopsided and warm with the foob
Everyone have a good weekend.
Sharon
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Sharon,
I visited Satellite Beach many years ago! I was dating someone whose family moved there.
I finished up 1 year of tamox last night!!!! Only 4 more years to go. Doing good on it too. Most of my se's have gone away, just become a major beotch when it's PMS time. But other than that, very managable. Hope all is well for all.
Have a great trip Harley!
Gentle Hugs,
Trish
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Hi everyone!
I'll be offline for two weeks, because I'm going to stow away in Basha's luggage and go to England with her. I'm willing to pay the $15 luggage fee.
(That is my first emoticon BTW).Trish - congrats on making it a year, and good to hear your SE's are minimal.
Harley - Have fun in Cocoa. I used to vacation (yes, vacation) in Titusville, just North of CB. Enjoy your trip and try to take each moment as it comes.
Stefie - My prayers are with you - I know you were having tests a few days ago - I pray that you will receive good news.
Deb - any word on the job?
Virginia, I heard a rumor that PETA was trying to get Ben & Jerry's to make their ice cream using Mother's milk! Please, tell me this is just a joke or freakish urban legend. (Seriously, a lady in my support group said that PETA sent a letter to B&J).
My appointment with my rad onc (last friday) went pretty much as expected. First the resident came in blah, blah, blah, did a clinical exam, said everything felt normal. I said "normal? there are three big lumps in there!" So I pointed them out and he said "yes, that is normal scar tissue." So then I said "this one has popped up in the last couple of weeks". and he said "yeah, you are at the prime stage for developing scar tissue." Well, this would have been good to know ahead of time. Next, Rad Onc comes in - same thing with her. I explained the fatigue issues and she said "go back to your PCP" (I already had that scheduled, but I thought I could save myself a trip on the account that they are both MD's.) Then, I asked her what she thought of the areas on my Mammo that the radiologist wants to look at again in 6 months and she said, "I haven't seen the films, but I've read the report." The report said BiRADS O, more images needed. I was HOPING she would look at the films herself and weigh in, but no, in fact, they didn't have them and she was having them cabbed over and then they would be put in my file. My guess is that she won't even see them before they go in the file. To say I was a little frustrated is an understatement. I'm not overly concerned, probably because I'm just too tired to be anything. Wow... I guess I was a little miffed! I didn't realize it until I started writing! thanks for letting me vent~
Anyway, have a great weekend ladies!
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Barbie, I do feel for you. I would be very frustrated as well...and when I am tired everything is magnified and sometimes I panic...hang in there!
Trish, you inspire me: one full year...I am just counting the bottles....and 3 months is all I can muster at a time.
Deb and Harley can't wait to hear how the job ventures turn out for you, I just finished week one on the job...I haven't worked 5 days in a row in I don't know how long...I'm not so sure I like this job...I have already voiced concerns about performance and expectations of another staff member...I have an honest heart and I may step on toes...but the job is tiring, today I took around 20 elderly patients with another nurse and was on my feet at least 7 of the 8 hours shift, the nurse I precepted with did just the same and does it daily...I need to figure out a way to make my days more efficient on this job if I am going to survive.
And my last employer wants me to work as well in the emergency room...and I am relieved....so near the end of the month I will put in some hours there hopefully.
My DH has handled this financial burden as much as he can, but the economy is so poor right now that his business is suffering as well. so if I can I will work as many hours as possible.
Basha, so happy for you to have a nice visit with your sister in England, 2 weeks sounds heavenly!
Lynn, so glad the climate is easing up on the heat...God Bless!
Hi to All
Amber
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I have been taking tamoxifen for nearly 5 years (high risk due to LCIS and family history) and I only have about 2 weeks left to go to finish! Fortunately, my SEs have been mild overall, but it will be interesting to see how I feel when I'm off the tamox. (hoping the hot flashes and achiness will decrease).
Anne
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Amber - thank you for the kind words
Anne - you are the inspiration - congrats on 5 years (in 2 weeks!) Here's to no more se's!!!!!!
Gentle Hugs and I'm off to the bed car - night all!
Trish
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Bye Everyone,
I have shrunk you all down to 3 oz. so you can sit in the plane with me and watch the movie.
Love, Basha
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Basha,
Have a safe trip and we can't wait to hear all about it.
Trish,
Hang in there with that fatigue. You may be like me -- more sensitive to the rads so it took more out of you. I know it did me! But I did find that the more that I did, the better I felt.
Anne,
A big WAHOO! Congrats on getting through 5 years. I guess the train is going to have to make a stop to let you off. We'll all be waving frantically at you as we pull back out.
Barb,
Don't you just love these docs?!?! I hope they get a doc just like them if they ever get sick!
Harley,
Hope you have a great time out on Cocoa Beach. I can't hear that name without thinking of "I Dream of Jeannie" (am I dating myself?)
So the big news --- I got the job! I start on Monday. And for more than I making now. And, get this, I was asked by the office manager on Friday if I could help cover the desk 30-40 hrs/wk until the end of the month when they hire someone else! What nerve, huh? I told her that I still didn't understand what I didn't have that she thought was needed but, before she could say anything, I held up my hand and said that I was done, I was through. But that I had done everything that had been asked of me and that I was here every minute of every day that I said I would be here and that the next person may not be like that. I also told her that I was expecting a job offer any minute and that I would have to let her know. I found out that I had the job after I left Friday. When I got home, the office manager calls and tells me that if I need a recommendation, that she would be happy to give me one. I said thanks and I'd let her know and have a good weekend. Then I hung up. So Friday will be my last day here.
Hope everyone is having a great Monday.
Deb
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Hello all - Sending positive thoughts to all who are struggling right now...whether it's the job situation, waiting on test results, or just feeling low. Hang in there. I definitely was feeling very low last week. I had my 6 month checkup with my surgeon, and it makes me feel anxious even though I try to be so upbeat. Can't help it, but I did cry "happy tears" with my surgeon. She is a wonderful doctor and a new mom! Everything was fine and I won't go back until March 2009.
The day before my surgeon's appt, there was a company wide announcement on a major restructure, which we all know means job cuts. This has been a very difficult time for my family, as my husband is in the real estate business (and I carry the insurance). So, between the appt with the surgeon and the email notice about the impending restructure, I was feeling low. I'm doing better .... and I can say it's due to 100 kids at my son's high school !!!
Yesterday was the ACS Making Strides Breast Cancer Walk in Boston. This is the oldest breast cancer walk in the country, and it was so inspirational to participate as a SURVIVOR. There were 100 kids from my son's high school (out of a total of 600 kids). All the fall sports teams participated .... and we raised $3500+ for the cause. Three of us moms, who are SURVIVORS walked with the kids. We were given a pink sash to wear, with the word survivor on it. So many kids gave me hugs, it was so moving. It was a wonderful day. There were 40,000 participants and the total raised was $3.3 million.
I am sending those hugs to all of you ....
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Hello all. It has been so long since I posted or even logged on that there are six (!) pages of posts that I haven't seen. I have been so down that just getting through the day is all I can muster. It has been three months since I started on Tamoxifen. The first month and a half were a breeze, and I remember a post where I wrote how easy this train ride was. Hah! Boy did I speak too soon!
Since then, I have gained six pounds - a lot when you are only 4'10". I did what I usually do when I gain a pound or two, but that only slowed down the weight gain a little. I had to drop my calorie intake all the way down to 900 calories a day in order to lose any weight! I'm doing a half hour of cardio a day too. After a month of that, I finally lost 3 pounds. All my clothes are way too tight, and I feel bloated. On top of that, I developed lymphedema, and my right arm and hand are all fat and puffed up and painful. Today I got my compression sleeve and glove and I hate it. It's so uncomfortable and I have no dexterity left in my hand - right now I'm typing with two fingers.
Sorry about all the whining. I can't remember what it feels like to feel healthy and strong. I don't feel like me anymore and I don't like it. I'm not sure if I want to be this new person.
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Munchy,
Don't give in. You have gotten through so much already. You'll get through this too. And you are not a 'new' person -- you're still you -- you're just on a side road at the moment. You'll get back to the main road. Know that you are not alone and that all the riders are here with you.
And think of all the house work that you can really say you just can't do right now. I'd love a good reason to let the house go for a while. Take care of you and whine all you want.
Deb
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Thanks ladies, it's great to be here.
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Harley and Sharon thank you for your replies. It's great to be here.
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