Bottle o Tamoxifen
Comments
-
Hi--I got an email back from my MO--she said this: "There is speculation that
hot flashes may mean more efficacy of hormonal therapy but this is definitely
not proven." Hmmm. Also I checked with my pharmacist and he said it looks like Teva is out of stock until May, and Mylan's still not back, so Watson it is. Phooey. Is anyone else finding this??? Wonder if I could get another brand in Canada, as I'm only a couple of hours from the border....0 -
RunFree, can you get the Teva in 10mg and take 2? I am able to get Teva, but only in 10mg b/c of the shortage.
0 -
I've been taking tamoxifen since 5/11. Has anyone experienced chronic chapped lips? I've been getting this lately and the only thing I can possibly relate it to is tamoxifen.
0 -
tgisiner - I have only been on tamoxifen a month. However, during my run with Femara and Arimidex, I definitely had chronic chapped lips. Drove me insane! Nothing I did seemed to help or improve the situation. Irritating side effect, but much easier to deal with than some of them.
0 -
tgisiner, I too have been having chapped lips this winter that no amount of lip balm seems to relieve! I don't usually have an issue with chapped lips, I had not considered that it might be related to tamoxifen, but now you have me wondering. This is my first winter on tamoxifen. One thing I've noticed this winter is that my nasal passages are extremely dry (in addition to the chapped lips). I work from home, and we have radiators for heat (not forced hot air), so I am not usually affected by dryness in the winter. I know some other women here on tamoxifen are experiencing dry eyes.
Hmmmm....
Maybe all the moisture in my body is being robbed by the sweat from my hot flashes! ;-)
(Though ::knock on wood:: I'm not experiencing vaginal dryness.)
0 -
MBLizzy, I asked if the 10mg tablets were available, and he said they weren't around either. I do live in the boonies, which could have something to do with erratic supply. I guess I should be glad the Watson is available to fill in.
I think my lips have been a little more chapped than usual.
0 -
Gemini4, no surprise that you are not experiencing vag dryness.....while the estrogen is being blocked from breast cells, it may be providing estrogen based vaginal lubrication. I guess that fits in with the concern about uterine cancer. I will take it as a gift!
Run, interesting difference of opinion among docs re: side effects and efficacy of Tamox. Who knows....I suppose this is all just a big crap shoot! Good luck to all of us!
MO wrote to say she is still waiting to hear from cardio.....hmmmmm.
0 -
Run- thanks for the link- some good info there, though my lymph coach did not provide such strict guidelines. I see my MO on Monday, and have a ton of questions for her. Sometimes I feel like "the problem patient" with all my questions, but there just is so much conflicting info on the net.
Lacey- Oh how I miss Gilda!!! And congrats on your getting fit! I would def get one for flying if for nothing else. You don't want to be in the air and all of a sudden have a crazy swollen arm.
The allergens here and tam are kicking my butt right now- I feel lucky to have the energy to make through the workday. You all are an inspiration though! You all keep me from just going and laying down or sitting on the couch every chance I get.
Thanks ladies!
0 -
Started Effexor today for hot flashes... not sure if I'm going to continue with it. Cotton brain, dry mouth, dizzy, so nauseous I've almost puked several times. Anyone got any sage advice? I'm seriously considering just stopping the Tamoxifen now.
0 -
Had an appt with Onc yesterday. My blood work reflects a Triglyceride measure of 879 (should be under 150) so she has taken me off of Tamoxifen. She said it contributes to high Tri's. ~ Just an FYI to those out there with cholesterol and/or Triglyceride issues. Keep on truckin'~!
0 -
chelsea-----did she have radiation? My mom had it many years ago and she says the affected breast has been hard as a rock ever since (over 27 years). Neither she nor I ever had any issues like that due to tamoxifen (it doesn't cause breast hardening).
McKatherine---I had multiple large ovarian cysts which ruptured while I was on tamoxifen (I ended up with a TAH/BSO, but I think this very rarely happens, I was just very unlucky). Sometimes wish I had just stopped the tamox to see if things would've just calmed down; but then I would've been without any preventative meds for my LCIS and probably been facing another huge surgery anyway (BPMs). Oh well...., can't turn back time! If your situation is different, maybe you could try going off tamox temporarily and see if the ovarian cysts shrink or go away completely? Check with your doctor first.
Anne
0 -
lahela, so sorry to hear you're having those side effects from effexor. What dosage are you taking? I have a checkup next week with my MO and was thinking of asking for effexor -- the hot flashes are getting more frequent and intense, and I'd love some relief. But I'm pretty scared of effexor, as I had a bad experience with just one week of Zoloft about ten years ago when I was experiencing mild depression (the Zoloft caused horrible jaw clenching pain, dry mouth, agitation, and the feeling that I could jump out of my own skin -- the side effects were much worse than the blues I was feeling). So I don't know if I even want to give effexor a try. I am going to ask my MO about Remifemin (black cohosh). I know some here take it with their oncologist's recommendation, but I don't know how open she will be to my using it.
0 -
purl51- just had blood work done and my cholesterol levels were ok, but I am on a statin so maybe that has been helping.
However, my glucose level has risen to the point that I am now "pre-diabetic." They also did an A1C test which measures glucose overall for the past 3 months and it was slightly over the norm. There is no history of type II diabetes in my extended family and as for me, my levels have always been stellar. I started tamoxifen 3.5 months ago. Is this a coincidence?
Has anyone heard of elevated glucose with tamoxifen?
Donna
0 -
Ladies. Effexor takes a bit of an adjustment-a couple weeks for sure. But, I have not had an issue with hot flashes-a couple of mild warm feelings-but NOTHING like what I was having. During the adjustment phase I had a very dry mouth. But I have that now with tamox and had it with the AIs. Had nausea. But have it now and had it with the AIs. Be sure to take it in the morning-bottle may say to take @ night-but does interfer with sleep. Start low and work up. I think I started @ 37.5 mg and am not @ 150mg Extended release. It is important to take every day. I am very pleased. And I have been depressed a bit with my side winding roads. No telling how I would have felt without it. I was a bit dizzy getting up-but my BP is always low-so I was used to that.
Best of luck. I hope it works as well for you as it does for me.
0 -
Hello, I switched from arimidex to tamoxifen in July. I had a hard time with the AI, slipped over to osteoporosis in my spine and got wicked trigger fingers besides being depressed. I started on an antidepressant, but when I switched to tamoxifen I had to switch to effexor because of interactions between the two meds. I don't like efflexor much, I was on a low dose 75 mg long acting capsule. Then because I am having so much pain I was sent to a rheumatologist who decided that I had fibromyalgia, so my PCP upped my dosage actually doubled it. Which was not so good. Now I am waiting for my insurance co to approve a script of Pristiq which is just a little bit different chemical combination. But it only comes in a brand name.
Oh the joys of bc. I hadn't thought about how dry my skin and lips are, but I've been dry since rads.
0 -
Sending lots of (((HUGS)))to all of you sisters who are navigating the mine field of pharma as we try to manage these side effects.
I just had an email from my MO who said cardio cleared me for the ritalin trial....yay! So I will start on a small dose and see how I do.......hopefully well.
I really need to get some things done around here, besides exercise (!) so the timing is good. Here's hoping the brain can click back in, in a productive way!0 -
Hooray Lacey! That's great news about the Ritalin approval. Phew! Let us all know how it goes!
0 -
Thanks Run! I so appreciate your making me aware of this as a possible help for cognitive fog which presents as executive functioning disorder with me.
Hopeful.....we'll see! It will be great if I can regain even some of my productivity!
0 -
I decided today to start tracking my hot flashes so I can determine how often they really occur. I found a free iPhone app called "Event Log." It's pretty simple -- you create an event (in my case I created "hot flash"). Then when I'm having a hot flash, I open up the app and click on the event. It enters it into a log with a time stamp.
Today I've logged in 12 hot flashes so far since 8:30 am -- a 14-hour span. Last night I kept a mental note of the ones that happened during sleep -- there were 5 that woke me up and 1 on arising. So in 24 hours I've had 18.
I had acupuncture early last summer when I started getting strong hot flashes after about two months on tamoxifen. (I had been getting them -- but not as strongly -- prior to tamoxifen as well.) I did initially feel some relief with the acupuncture, but then the summer got very hot, and they came back. I'd love to resolve them with acupuncture, but right now I can't justify spending the $100 per session and time commitment.
I'm pretty scared of how I might feel on effexor. I would want to be on the lowest dose possible. My reaction to a low dose of Zoloft years ago was horrible. I felt side effects the very first day (even though the doctor said it was too early to feel anything). The side effects ended as soon as I stopped taking the medication that first week. I tried back a few days later and the symptoms resumed, so I never took it again. I really hope my MO gives the green light for Remifemin -- I know there's no guarantee it will help with the hot flashes, but I'd like to try it.
I'm not contemplating giving up on tamoxifen. I just feel like I'm at a breaking point with the hot flashes. I thought they might be better in the winter, but frankly I think winter complicates things. Each hot flash results in a damp, sweaty neck, chest, scalp, etc., that chills me to the bone after the broiling heat subsides. Especially fun if I'm out and dressed in a coat/scarf/hat that get damp and sweaty.
I know I'm preaching to the choir. Sorry for the vent. I try to be a good cheerleader and have a positive outlook about tamoxifen. I don't even know if the hot flashes are entirely due to tamoxifen, since they started (mildly) the summer before my diagnosis. I'm squarely facing menopause right now (it has been over 70 days since my last period, and that's the longest I've ever gone without a period except when pregnant). But I know my options for hot flash relief are also limited to whatever will safely interact with tamoxifen.
Finally, I know that exercise is said to help (and something that I should be doing regularly). I can't bear the thought of sweating more ... I have no motivation to exercise even though I know it would help me in so many ways. On the one hand I'm looking forward to seeing my MO next week, but on the other I am prepared to feel disappointed than she won't have enough time to discuss all that I need to talk about. I'm bringing a list of concerns -- and there are many -- including the hot flash issue. I guess I didn't realize until writing this that I'm really in a bad funk. Thanks for reading.
0 -
gem, that's what we are here for. listening and caring. I know what you mean about all the concerns and not enough time with the doc. I can email my docs and then someone in the office emails me back or calls. I am developing a good relationship with my MO's PA. stand your ground to get your questions answered. I usually forget a few questions or then the answers. So I ask for it in writing if possible.
Ha, ha during the winter I have to wear many layers. Then I can start peeling them off when I get the flashes. I had someone at church ask me last week if they were "natural" no siree, I said. The effexor did help with them but they are not totally gone.
Yeah, what's with the telling us to exercise when we have no energy. Since it's been so cold I do my WII exercise program and walk the dog for a half hour. I have to admit that I feel better afterward.
0 -
Hi ladies, Been a while since I've been on here but I'm glad I jumped on tonite. I was glad to hear I'm not the only one who still feels like they are in somewhat of a fog since chemo. I walk into rooms and have forgotten what I was looking for, cant find the right word, string together an intelligent articulate sentence, recall a recent thought quickly etc like many of you and I was attributing it to chemo but now Im convinced it must be the tamoxifen. I also have had some pretty achy joints worst of all is my shoulder which just got an MRI because the pain was so bad and moves down my arm sometimes. I just moved and switched pharmacies and noticed I've been switched from Teva to Watson brand Tamoxifen. Has anyone had problems with switching brands? I start it tomorrow. Thanks for sharing all your stories
0 -
This may have been mentioned, but I saw today that insurance must cover Tamoxifen with no copay under The Affordable Care Act.
0 -
About the exercise piece....
....last year, when a prime concern of mine was fatigue from the start of tamox, my MO ( who does spend a long time with me every three months....I feel she takes my SE concerns very seriously) referred me to the survivorship program to have them assess my ability to join a fitness program monitored by one of their trainers. Well, I felt mildly resistant, but followed through and have continued working with the trainer since that time with great results. I also worked with a PT for a few months for shoulder and knee pain, and found that to be really helpful....I was determined to avoid knee and/or shoulder surgery, and so far have been successful as I do my muscle strengthening exercises daily.
I have found that the daily exercise regimen (along with getting better sleep using the cr melatonin, and eating a really healthy diet) has increased my energy, and I've dropped 20 lbs, which I feel is also good to help prevent recurrence of estrogen positive bc.....tho wardrobe management has been a bit of a nuisance!
I am not sure how the exercise piece impacts hot flashes, since daytime hot flashes are generally not much of a problem for me, but I suppose that would also be a good question for the MO, g4. I hope you can find some relef soon!
0 -
Gemini & Susan, I'm taking 75mg capsules - it's now 7.30am here, 24 hours since I took the first one, and I still feel nauseous. I know it takes time, but I can't just decide I'm going to spend a week or 2 feeling violently ill! Had a horrible night of headache, jaw clenching, shivers and shakes. And I had my full compliment of 6 overnight hot flashes which woke me, they just weren't as strong. I'm not taking any more. I'll see my Onc on Monday and will discuss other options.
0 -
Lacey12
I have been eating what I thought was more healthily - then I realized that my lack of energy may have more to do with my diet than still being tired from rads.
Would you be happy to share with us some of your eating habits?
I know a lot of us want to eat more healthily but besides for portion control, no sugar and less carbs - what is a healthy diet that will both enable weight loss or even maintain a healthy weight and still leave a person enough energy to exercise (even if its just a brisk walk)?
You seem to have managed a complicated case and come out on top. Well done.
Thanks
0 -
Melody, yes, there's been a national shortage of Teva and my pharmacy substituted with the Watson brand. My pharmacist tells me it looks as though Teva's gone for a few months. I'm having much more problematic hot flashes on Watson than I ever had on Teva. At first I also had sleep problems, but that seems to have normalized. I'm hoping the hot flashes will do the same. I told my doctor if they aren't better in another month, I'd be talking to her about options. Like you, gemini, I find it extra tough in the very cold weather--layers on, layers off, layers on, all day and night. There is a funny side to hot flashes though. The other day we were sitting at dinner and WHOOSH, my inner furnace came on. I started flapping my shirt away from myself to cool off, and my very funny 16yo daughter said, "Hey, it's dinner and a show!"
Lacey, that's great news about your careful weight loss! I wish I had access to a survivorship program like that, but I'm just too far away from all my cancer centers. Gemini, maybe just try to walk 20 minutes a few times a week? You wouldn't have to break a sweat, but it might still help. I am running about 3 days a week, and it doesn't seem to help my hot flashes actually, but it doesn't make them worse either. And it makes me feel excited about the future--but I was already a runner so I'm not saying that's the right answer for everyone.
0 -
Pre-post alert.....all about my individual food habits, so feel free to skip since it's long.....
Bounce, I think that for me, changing my diet to include a lot of cruciferous veggies, general portion control, reduced amount of meat, rare consumption of bread or pasta, no white rice and rare desserts has helped a lot, along with......daily stretching, 30-45 min brisk walking, floor (core) exercises and a series of lower body exercises my PT had me start to support my knees ( and yay, no more knee pain!)
I can honestly say, I have never exercised so much on a daily basis in my life, but I now have the time to do so since I recently retired. I retired mainly due to the brutal fatigue that started with the tamoxifen. I'm 68 but would still be working my crazy job with long hours that I loved, if it were not for that fatigue problem. I would not be able to do what I am doing now in terms of diet and exercise if I were working tat full time job.
A very helpful diet habit/help has been my daily intake of a vegetable/fruit smoothie...usually for breakfast. I find that the fiber keeps me feeling full. I add lots of powerhouse foods that maybe help my energy (?). I use kale, spinach, carrot, brussels sprouts, blueberries, chia seeds, a few walnuts, an orange, fresh cranberries, apple, frozen pineapple and sometimes pear and/or banana. This week, I added hemp seed, which also adds to my feeling very full. I have not added any protein powders but I know lots of people do add that. This is a time consuming process, so I make four smoothies, have one, share one with DH, and seal up two to save in the fridge. Not sure how much nutrition is sacrificed in the refrigerated ones, but it is too much effort to not save them up!
I often make healthy, non cream soups, that usually include kale, tomato, any variety of other veggies, and beans, chicken (sometimes a small amount of diced low fat sausage for flavor) and these are my "go to" lunch meals if I don't have yogurt and nuts, or avocado, or a salad.
I also think that having smaller dinner meal portions has been very helpful for me with the weight loss. I prepare meals heavy on the veggies, minimal carbs and small neat portions. My favorite "healthy low cal dinner" is baked fish (cod, salmon, etc) served over a large bed of spinach sautéed with onion, garlic and sliced mushrooms, served with a cucumber salad or garden salad.
What I have found is that as I have been consistently eating healthier food, I am less hungry, and feel more energetic....probably has to do with the exercise too. That said, if I do have a craving (rare these days) for some chocolate or fro yo, I let myself have it!
I hope some of that info is helpful, but of course everyone finds what works for them through trial and error. Best to all.....
On another topic, I am a bit terrified to think about changing tamox manufacturers, given how I might react to the fillers. Yikes! I think I'll place a call to Caremark today and see what brand they are dispensing.
Run, glad you can appreciate your DD's humor while enduring the flash.
She must be a riot!0 -
Lacey12
Thank you so much for taking the time to answer - you are an inspiration.
One of the things I have discovered so far is that if I want to eat a healthy lunch it must be ready before hand - so I too make enough for a few meals - prepackage them and take them with to work.
It basically means that I eat the same thing for lunch every day but I do vary it from week to week so its manageable.
Your post has given me a lot of good ideas - especially about exercise. I just need to figure out how to fit everything into the day. I am still working and as you say it takes time and effort to eat well and exercise. But it is so worthwhile!
I really admire you.
0 -
Happy update for Teva favorers! As reported, I talked to my pharmacist about the Tamoxifen shortage a couple of days ago, but I didn't have time that day to wait for my new prescription to be ready (and I didn't need it yet). Today I stopped in to get my new Rx, and they had found some Teva 10 mg tablets! So I will just take two of them a day. Also they said it now looks as if Teva 20 mg are out until the end of March, which is better than May. I have two more days on Watson and then I hope I will be back to my gentle warm-ups only on the Teva--no more flashing my family while I'm flashing myself! I asked about taking two 10 mg Teva pills the other day and they said they couldn't find them. So if you're in that situation, ask them to check again.
Lacey, I LOVE hearing about your diet, and you too Bounce! Lacey: do you make those smoothies in a blender or juicer? In the ones you store for later, do you find a lot of separation, and do you have to shake them up again somehow? How did you know what proportions and amounts to use? I love thinking about making a soup just for my own lunches. I often take soup or stew that's leftover from our family dinners, but I don't set out to make something just for myself. Bounce, what do you eat for your healthy lunch? I sort of know what I want to do at breakfast and usually at dinner, but lunch is a bit of a puzzle.
0 -
Run, I use a Vitamix blender for my smoothies...and have found that it is the best for really liquifying everything you put into the blender. And seriously I do not think about portions...just whatever looks right to me, or what I have on hand. I am a comfortable cook, thus I never worry about portions like you have to if you are a competent baker ;/ which I am not. I bake, but not well, since I hate to follow directions exactly (my subclinical ADD?). I guess that is just as well so I won't have baked "product" hanging around the kitchen!
Oh, I forgot something that I consider really important with the smoothies...I ALWAYS add a raw beet to my concoction since it makes the drink a delightful raspberry color.....and is good for your liver, which can't hurt with all the drugs passing thru it) . I could probably get past that green brown color aversion now that I have been making smoothies for so long and know how they will taste, but really do love the deep pink color that mine turn out. Of course, if you hate beets that could be an issue.
Run, I find that there is very little separation in the saved smoothies, but if there is a bit on the bottom, I just stir it up.I also use a straw to drink them because I don't like the fuzzy fiber feeling they can leave in my mouth. I think the difference between the veggie/fruit smoothie and a juice drink is that the smoothie can be a meal whereas I guess the juice is not.....or a least that's what my trainer says. She juices (because she has a juicer ad she knows she'd have to take out a mortgage to buy a Vitamix! Actually, on that topic, I found you can get a good buy on a Vitamix from B, B and Beyond, with a coupon in NH with no sales tax! I splurged and did that for our lake house up there, so I could stop hauling this monster back and forth. Extravagant....but for my health, right!
Thanks for the nice compliments, Bounce. But believe me, I am no diet/exercise expert at all....but this past year have decided to make my body and my health my project. I am very surprised at how much I enjoy exercise now that I do it regularly...and see results. I want to get strong and flexible and that is motivational for me. We will all find our paths on this journey....I'm a bit surprised at mine, but have good support to keep it up.
Bounce, for lunch, do you ever try roll ups with low fat cheese around some chicken or turkey and lots of lettuce and other veggies inside? Or non-fat cottage cheese with walnuts....thinking about easy peasy protein things for you. I hated making lunches for work and used to make three days worth to avoid doing it every night. But yes, planning ahead is key to keeping it healthy. I have it a lot easier being retired.....
Heard from MO today that she has to mail me my script for the Ritalin (controlled substance....yikes!), so I won't start it until next week sometime, which is fine. With my hair increasingly shedding, I will start the biotin today, since I did not want to start them at the same time. I am assuming that biotin only grows hair on your head, right? So much pharma, so little time......who would have thought!
0
