Bottle o Tamoxifen
Comments
-
So many different medicines to fix the SE of the others I can't keep track of all of them!
0 -
Headeast and all. I started on Femara. Was taken off for 6 weeks. Started on amaridex. Same horrid SEs. Taken off 2 months. Back to Femara. Same thing. Off couple months. Now Tamox. Still same horrid SEs. My MO and I will discuss in March quality vs quantity. Seriously. Everyday I range between 5-9 on the pain scale. Take over the counter meds-and the occasional narc. Might as well take skittles. Have had all the scans. Clear. He tossed fibromyalgia one day and almost got drop kicked. Right. Suddenly in a very healthy fit active woman BC AND fibro. Right. He has talked about my taking drug holidays for a couple of months at a time-but the pain is not gone at the end of the 2 months. I am of strong German stock. Don't take drugs or really complain of pain. Was back on campus at admission meetings 5 days after my first MX with pain ball in place and a drain. Waited 7 days after the 2nd MX but had 2 drains
. This really sucks big green weenies. I take effexor 150 mgER--so no hot flashes. One good thing. Just fed my > 100 year old sour dough starter and going to bed. Fatigue. Almost every w/end for the past many I have slept from Friday afternoon until Sunday morning. Good thing I leave dog food out in large containers.
Much love
0 -
Thanks for the info about the Tamoxifen shortage from all of you! I called CVS yesterday (had dropped off my prescription last Wednesday and was told Friday the drug was on back order). After being a little insistent, I got the pharmacist to contact my MO for an OK to take two 10mg tablets per day rather than one 20mg. (Duh -- isn't this a common sense solution that should have been offered right away? Honestly!). So I have my bottle of Tamo -- it is from Teva. I have taken only two doses so far, but no SEs.
0 -
hello everyone! Amy here... I took the tamoxifen plunge yesterday. feeling uneasy about it. Ive read and heard lots of side effect stories and am trying to figure out if the benefits out weigh the side effects. I would love some feedback as to your thoughts and how it has affected or not affected you. what you do to help releive the SE's... feeling conflicted!
0 -
Amy, it is scary and there can be SEs, but try to stay positive - the majority of women who take T don't get bad SEs. Out of the five women in my family who take it, I am the only one who has any. My hair loss seems to be easing, the arthritis is manageable, so the only thing that is a problem are the hot flashes which keep me up at night... BUT there are meds that can help with that. I just need to find one that works for me. My BS says the hospital has a doctor who specialises in hot flashes (!) so I'll be getting a referral to see him. Just remember, the reason we post here is because we have problems - there are thousands of women who don't need to post here because they have none.
0 -
Amy, what lahela said! There are lots of SE stories because the drug has been around SO long (>30 years) and it's been around so long because it works well for so many. Big population, many stories--but the far larger majority of people who take it do fine and they just don't go on message boards and crow about that. It's true that a few people get serious enough SE's that they discontinue it, but that's hardly something you can weigh out when you're just starting. When I was just getting going, my MO told me that she doesn't usually hear about any side effects for 2-4 weeks, typically right around 3. That calmed me down, because it meant I didn't have to picture being walloped by unfamiliar feelings from Day 1. My side effects have been, first, extra hunger, then for a while, much less hunger (dropped some stubborn pounds!), then back to normal; hot flashes, more at first, then less, more recently on the Watson brand, and I think fewer now that I'm back on Teva (fingers crossed); a couple of little things that may be coincidental, like maybe my eyes are a little dryer (they're dry anyway since I had Lasik); maybe my hair has a few spots that are growing slower; maybe I'm a little spacier, but that could be from age, radiation, cancer chaos; my periods are shorter and a bit irregular, but hey, I'm 50, so that might not be T's fault. My only real complaint is that I got an awful skin rash, but we never nailed down whether that was a Tamoxifen side effect (quite rare but possible) or just a random/undiagnosed itchy rash (surprisingly common). We finally stomped it out with a six weeks of antibiotics and I'm fine now.
You've been through a lot. Although it's too soon to say, it's quite likely that Tamoxifen will be the easiest part of your journey.
0 -
Amy, I totally agree with Lahela's and Runfree's comments. No need to worry about anything before it happens since so many women do not experience any troublesome SEs on Tamox. Hopefully, you will be in that happy group. Good luck to you for smooth sailing!
0 -
thanks ladies you are very sweet! I wil def give it a few weeks and hearing I shouldnt have any if any Se's for at least a few weeks did make me feel better. I know it seems crazy after all I have been through to be almost afraid of tamoxifen but I was... could be Ive just been through so much over the last 17 months. At any rate thank you for the feed back these boards have been a huge part of my journey and if I have any SE's I know now where to come
hugs to you all!0 -
Hi, I've been on Tamoxifen for just over 6 months now. I'm curious what other have experienced with regard to body hair. Not only the hear on your head, but also underarms, arms, legs, and yes, down there too. My hair regrowth from chemo (4xTC) has been slow (in all of the areas just mentiond) and a dermatologist suggested that it might be the Tamoxifen. Of course, I'm concerned about the long-term effects of the chemo Taxotere, but I interested in knowing what others have experienced with Tamoxifen. Thanks! ~Jumpy
0 -
Thanks for your post Amy as I'm exactly like you in that I seem to be most afraid of going on Tamoxifen more than anything else I went through. I thank you for letting me know that I'm not the only one with these thoughts
I have my Onco appointment this afternoon to start it and while I won't say I'm terrified, I'm half not looking forward to it. The other half is smacking me upside the head saying "but this is good for you ya goof!" I'm also wondering if there are any questions that you fine folks can share with me that I should be asking my onc. I have a list of about 10 questions so far that I'm sure will lead to other questions but any advice would be great.Thanks
0 -
Amy, For what it is worth, I started tamox on Jan 2 and have not experienced any SEs.
0 -
thank you for all your answers.
I will restart Tamoxifen on monday as prescribed by my MO. I would never give up this medicine, it is like free insurance!
I am definitely less tired now that i am not taking it. I was feeling tired like when somebody is pregnant... And sleepy.
0 -
So, again with the on going Tamoxifen saga.........ExpressScripts called me yesterday they can not get Teva, but can get Watson but since that is one I can not take they called to see if I could take Mylan.....WTH that's the one I was on from the start and prefer!! The pharmacists said he can get it 10mg but I needed to have my oncologist call in a new rx for the 10mg 2x daily. And to think I have either 3 years or 8 years left to take this!!!!
0 -
ok, and I do have a question....I have the classic bone and joint pain from the tamoxifen, I take 4 glucosamine and chondroitin pills a day to help with this, a co-worker suggest I start using B1 that that would help. Has anyone tried or know of this?
0 -
Mstrouble 16, I do not have experience in that area but it certainly couldn't hurt to take the glucosamine and B1. Manybe someone else would have a better answer than me.
I just saw my Oncologist today.She was totally unaware that I had stopped taking the Tamoxofin and even though herniated and I had discussed this she must not of read my chart to well.We discussed the itchy eyelid that I was having and she said there is not much else I could take besides Lupron shots or Arimidex but since I'm not menopausal yet Arimidex wouldn't be an option.Now what? I feel like maybe I was being a little over dramatic about the eye and being so tired .She said there is no studies that indicate that only taking 10 mg would be effective.That wasn't my original intention.But I thought there would be other options.Then she forgot to give me my lab results.So when I asked for a copy at the checkout they were like "well if she didn't tell you the results then I can't give
you the copy.So they were going to
Make me go back in the room.Finally they went back she told them all results were good and They gave the message to me.What an ordeal.But I did walk out of there with results.
0 -
So, is Mylan available now?
0 -
Hi- Does anyone else take Effexor for night sweats caused by Tamoxifen?
I am on the smallest dose but it does help but this past week I got the stomach flu and could not keep in anything along with my pills and I got such an incredible headache. I am not sure if it was from the flu or if the Effexor can do this if you can not take it for a day or two. UFF that was nasty!!
0 -
ndgrrl, I take Effexor! I started at the same time as tamoxifen, and have only experienced minor night sweats since starting both on Jan 2. I haven 't had to skip a dose but I have heard that there are side effects when you stop taking Effexor . I hope you are feeling better !
0 -
I'm surprised that several of you have needed a new Rx for the 10mg pills. My pharmacist swapped them out and as far as I know, he didn't need to contact my MO. Maybe he did and he just didn't tell me.
0 -
runningfrom... its worth alot thanks!
0 -
Mstrouble--My MO put me on the Osteo Bi-Flex when I developed joint pain at night. It was the one with the highest concentration of joint meds....think it was the purple box. It made a small dent in my joint pain. I then added a 3" foam topper to my bed which made another small dent in my joint pain. Then a holistic breast doctor put me on Turmeric and Ginger which are anti-inflammatories and I added a small (0.3mg) dose of melatonin (which I buy from Amazon as this size dose is hard to find). I can now say that I am mostly pain free and am actually sleeping through the night again! I don't know which med worked or if it was all 3 but either way, something worked! The holistic dr told me to take 500mg of the Turmeric and Ginger 3 times a day but I only take one dose each morning and it does the trick for me. He did recommend that I buy the Gaia brand of Turmeric and said any Ginger would do. I buy both from The Vitamin Shoppe. Ginger is pretty cheap.
0 -
Hi there. Just started taking Tamoxifen this week. Was not thrilled about it, Day 5 now, nothing until today feeling a bit crappy, but could be the weather... But I will be switched to Aromatase Inhibitor after I get my ovaries removed at the time of TE exchange surgery. Hopefully either meds won't give me too bad SE. I am optimistic that I would be doing OK, just don't want to gain weight :-( But my initial path report (Ki-67 scores) showed chemo was inevitable and then Oncotype DX came back extremely low score on both tumors (10 and 9)... so now I don't have to do chemo. Sooooo happy :-) Considering that, I think I can take whatever the Tamox or Arimidex would do to me. It cannot be worse than Chemo.
0 -
lala1- will have to try the Turmeric and Ginger, I've tried just about everything else. My son told me to try the melatonin when I was going through chemo and it had the reverse effect, wide awake and had the jitters, guess I could try it again and see. Thanks so much for the suggestion.
0 -
oh and AmyinMI, as soon as I get the prescription I'll let you know if it is indeed Mylan brand or not.
0 -
kanam, great news about no chemo! What a switcheroo on your outlook, I would think. For me it was three months from diagnosis to knowing I wouldn't need chemo. Although my Oncotype score was 13, my MO was not really familiar with the test and was still pushing chemo. I did a thorough second opinion elsewhere and they politely suggested he was incorrect. Now I have a new MO
. As I've said here a little while back, she says she doesn't generally see Tamoxifen side effects for a few weeks, so maybe your feeling crappy is unrelated. Then again, I have read stories on this thread of other people who seem to get SEs sooner.0 -
thanks mstrouble! I wish I would have thought to ask when I renewed my script the other day. Maybe I'll put in another call to Mylan as well....
0 -
I know my SE's were immediate, but it could have been because of chemo too. I started tamoxifen 21 days after my last infusion, the SE's were so bad the first day my dh thought of taking me to the er. I was on them for about a month and had to get off of them for my 2nd surgery, when I went back on them after 3 weeks, while I had SE's they were NOTHING like when I first started them.
0 -
mstrouble--About melatonin...my doctors all were very clear on the fact that too much melatonin can cause the opposite effect. They said start with as low a dose as possible and build up as needed. My mom has been on this 0.3mg dose for about 20 years and said she sleeps like a baby every night. Most stores sell 3.0mg and 5.0 mg as standard doses, thus my search for a very low dose. I get a decent sleep with that amount. I've thought about upping it to 0.6mg (2 pills) but really don't want to put more in my body than necessary and since I get what I feel is a decent sleep (8 hours with very little disruption now), I'm sticking with the 0.3mg. So maybe try it at a much lower dose and see what happens.
0 -
Thanks RunFree. I am glad you got the second opinion. Onco score 13 is definitely low and I don't think you would get benefited from Chemo. The chart I received from my MO shows the recurrence chance in % as well... my scores (I got cancer in both breasts at the same time - due to BRCA2+) are 10 and 9 and that represent the chance of recurrence - 7.5% and 9% or something like that. But that is based on the stats that you are on Tamox. Thus I am on it. Yes, it was maybe because of the gloomy weather and too much work and stress that I felt crappy yesterday, as I feel fine today and worked out for the first time since BMX - 20 min. on Elliptical!! Will see how I deal with it. I have a couple of business trip coming up in Feb. I am so lucky that now I don't have to limit my travel schedule due to chemo!!
0 -
Hello, all! I'm on the tamoxifen train, too. I started taking it a week ago after a long argument with myself due to concerns about the risks and side effects. The only odd thing I have noticed thus far is that I have had nightmares for the past several consecutive nights! Could it be from the meds? I am a very active dreamer and experience the occasional anxiety dream, but these are full-on childish nightmares about vampires, war, kidnapping, violence...they're crazy.
I'll keep an eye on this thread to find out how you all are doing, especially what SEs you experience and what might work to alleviate them. Good luck!
0
