Bottle o Tamoxifen
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Thanks AR!
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Farmer Lucy. . .great news. Hope the recovery is now going better.
Scottie
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Thanks Scottie - yep - day nine and the only thing causing discomfort is the raging tape rash from the initial incision dressing.
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Farmerlucy- Probably a surgical tape allergy, I had that with my BC surgery, small blisters burning and itching...Take Care!
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Farmer Lucy. . .did they use tegaderm? I had a bad allergic reaction to that from my first biopsy. It's now noted that I can't use it. Hope it resolves quickly.
Scottie
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Glad your surgery went well and you are recovering.
I'm thinking I am done with the tamoxifen myself. After a little over year (with a break last July) I've just about had it with the pains in my hips, muscle pains in my neck and most recently painful foot cramps (despite tons of magnesium) and cramps in my thigh muscles , being constipated constantly (which caused me to develop rectocel), thickened uterine lining, a painful uterine biopsy-the only thing I don't have is hot flashes-well, no more than before.
Since being on Tamoxifen I've stopped exercising, started smoking (like a pack a week after being a non-smoker for a couple of years), I fall off my diet constantly, eating bread and sugars after being happily pretty strict Paleo for 3+years. Tamoxifen seems to make me sort of depressed and sucks away my motivation and impulse control. I quit taking it on Wednesday and don't know if I'm going back to it. I'll continue w supplements including flaxseed and DIM to modulate estrogen, work on my diet and exercise. I refused to take Tamoxifen until I was a year out and am now thinking that might have been the right choice for me. My mother took Tamoxifen for years (and hated it) and progressed to stage iv while she was on it, so I know there is no guarantee it will work anyway. No switch to an AI for me-my DEXA scan wasn't good and my onco thinks an AI would be "overkill" for me. I had tubular BC which almost never metastasizes, but did have one node involved. OC says if not for the positive node, she wouldn't have pushed me to take the Tamoxifen in the first place (tubular, less than 1 cm). Anyway, I'm taking March off for sure and will think about restarting in April. I just hate that this decision is driven more by fear than anything else. I know that either with or without Tamoxifen I have a good prognosis, as do most of us with early stage BC. I so wish they had something to help us that didn't make 1/2 of us feel like crap. Having the pharmacy switch me to Mylan didn't help either-I finished my Watson's and don't even want to think about what another brand might do.
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labelle - You can only do what you can do. I hear you and your reasoning is sound. Is does suck. Sometimes it seems like so many side effects and sacrifices for potentially so little benefit. Everything is compounded because of your mom. Ugh.
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labelle - I'm sorry to hear about you having so many symptoms on the Tamoxifen. As you say it is hard deciding to stay on it when it affect s your life so much. I had only a tiny amount 1mm of actual invasive cancer coming from a larger area of DCIS and that was enough for them to say take Tamoxifen for 5 years (after surgery plus radiotherapy). My symptoms are mainly psychological with leg cramps, a slight lower back ache and early waking. It makes me feel low/ anxious/ sensitive to stress/ scared/ morbid/ apprehensive etc. Sometimes it is better, at the moment it is a week on/week off but never normal really. It could be I would feel like this anyway with menapause. I am 50 but I think the Tamoxifen (which stopped my periods) is making things worse.
I hope you have a good break from it in March and come April you know what to do. That's good that you have a good prognosis either way. I'd like to stay on it if I can, I keep hoping I'll get used to it.
I have been on Wockhardt tamoxifen for the last year and a quarter i.e from the start.
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Hi I have been reading this thread hoping for some insight to help with my decision on taking tamoxifen.
My circumstances are very similar to Catkin. DCIS with microinvasion, lumpectomy, radiation. This is where we part though-my MO is not really recommending I take Tamoxifen. She did say however that it would not be "unreasonable" if I were to take it and did give me a prescription. Her opinion is that the extra benefit would not be worth the SE's. We reviewed the percentages and the odds of recurrence and they do do tick down if I were to take it.
Like everyone here I would like to do all that I can to prevent a recurrence but geez if I would walk away now and only have my followups and testing to deal with that would be something.
I have had the prescription for a week or so and one day I am definitely going to try it and the next day I decide I am not. I know that you all can't make the decision for me but I thought I would share my experience and current dilemma.
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So I have a few thoughts on the Tamoxifen SEs. My docs told me early on to expect SEs and gave me suggestions on dealing with them. One thing my BS said stood out....he feels that if you already have something going on, Tamoxifen will just exacerbate it...i.e. arthritis, allergies, etc. So we know that a lot of the Tamoxifen SEs are very similar to symptoms of menopause. The majority of women get BC around the time of menopause or they are thrown in to menopause through hormone therapy, chemo, hysterectomy, etc. So now you're trying to tease out which ailments are the fault of the meds or lingering from treatment or the onset of menopause. Now to add to that, I recently read an article about women who have reactions to their breast implants. Google it. They call it Breast Implant Illness. Apparently it's not uncommon for women to have issues after getting implants. And these are women who've not had BC diagnosis. The symptoms are extremely similar to hormone therapy treatment as well as menopause as well as chemo and rads after effects. So my thoughts on this go 2 ways....when you have issues and you worry about cancer returning you can comfort yourself in the idea that lots of your issues could come from multiple relatively "benign" reasons. On the other hand, it also begs us to be extra vigilant in our health. Seems lots of doctors would like to blame any problems on "just menopause" or "chemo after effects" when it could be something more. And if the seemingly innocuous implants can affect a small number of women, then we should be aware of that as well so we can make informed decisions. My doctors have never suggested implants could cause SEs and I truly don't believe it is very common. But it could explain some problems that some women experience. And in my docs favor, they were very up front about my treatment SEs and have been amazing at helping me deal with them. But I know not all doctors are that way so I think women really need to stay educated about all aspects of BC. The boards here have been a godsend for me. I am also a compulsive researcher so I've learned a lot that way. But asking questions and getting second opinions is key to good treatment.
Sorry to go on so long. I just want women to know there can be many reasons for what they experience. Insist on help from your doctors. That's what you pay them for.
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Because of multiple side effects, I took a 3 month break from Tamoxifen. None of the "side effects" went away. All my pain is CIPN andI am being treated with Gabapentin and duloxitine which is giving great relief. My new onco says there are 2 versions of duloxetine and the one I take does not interfere with Tamoxifen.
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Brigid_TO, not everyone has side effects. I've been taking it since July and am one of the fortunate ones who has no noticeable side effects. I had DCIS and a small spot of IDC. I wanted to do everything I could to try to prevent reoccurrence. So I decided to try it and see. You may be one of the lucky ones. You can always stop if se too bad.
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I know my side effects mostly went away last July when I quit taking Tamoxifen for a month. Basically none of my side effect individually are horrible (well the rectocel is pretty bad, but the damage has been done there, no undoing it) but combined they have become just too much for me. Of course the thickened uterine lining is the most worrisome, but also the least bothersome in a day to day kind of way.
We are encouraged to try these drugs and study after study has shown they statistically improve our outcomes, but most of us with early stage BC or DCIS will never have a recurrence whether we take them or not. Per my onco, my odds are 80% that surgery and rads took care of everything, 20% chance of recurrence w/o Tamoxifen and 10% with Tamoxifen. Even w/o Tamoxifen the odds are good. Our doctors know most of us don't need these drugs, but have no real way of figuring out who does and doesn't, who will have a recurrence w/o them and who can safely skip them, and who is going to have a recurrence even if they take them. Many people on here are fond of saying it's all a crap shoot. I don't really agree with that, but the medical community doesn't seem to understand BC very well, what causes it to begin with and what causes some people to recur and others to stay free of BC for the rest of their lives even with similar stats and treatments. Modern medicine still has a long way to go in this department.
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OK ladies, I've had a weird appetite since I started on Tamoxifen. I started it at the same time as my 33 sessions of radiation back in December but I've beendone with radiation for three now so I don't think that's the reason. My appetite is reduced and I almost always feel like I'm coming down with the flu. The smell of some kinds of food just puts me off eating, kind of like morning sickness if I still had that equipment! I'm also still exhausted. Could this be the tamoxifen? Should I bug my Mo? Any ideas
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I agree with tbalding. I wanted to take advantage of any and all weapons available. So far the side effects are minimal. The good thing about Tamoxifen is that you can stop it whenever you want to. It's been two years plus, and it's all good.
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labelle...As always I completely agree with your post. Sorry you are having SE from Tamoxifen. I know how difficult the decision was for you. Enjoy your break and good luck with what ever you decide afterwards. QOL does matter. We need to speak up for better treatment options!
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In my humble opinion, I don't think there is any reason not to check with your doctor if you have any concern no matter how minor. If the doctor has a problem with that it is the doctor's problem not yours!. Love, Jean
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I just finished my first month on tamoxifen. It was the Watson brand, and my side effects have been minimal. Got my refill and this time I got Teva. After 2 days I'm already noticing more joint pain. Would differences from brands show up that quickly or could it be that I'm just starting to experience the full side effects? I've read somewhere that it can take 2-3 months to really see how you'll do on tamoxifen.
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mellee-I did not have any noticeable side effects until about 4-5 weeks on Tamox. I hear others say manufacturer does matter though so you might ask for the Watson next time to see if it helps.
I have not been one of the fortunate ones with side effects. Tamoxifen has caused me a good deal of pelvic pain and a thickened endometrium which led to a hysteroscopy with D & C. I am currently off of Tamoxifen, about 2 1/2 weeks now, and the pelvic pain is minimal. I have also been having some abdominal pain which I saw my GI doctor about. He sent me for a CT of my pelvis and abdomen and the report says I have a severe fatty liver. I don't drink at all. I am overweight and my cholesterol has always been a little high although not enough to put me on medicine for it. I see liver problems can be caused by Tamoxifen. I wonder if I would have had this anyway but Tamoxifen made it worse. Anyone else end up with a fatty liver while on Tamoxifen?
So, I guess I will not be going back on Tamoxifen. But the AI's scare me too. I have heard that some of them can raise your cholesterol (mine is already 223) and cause osteoporosis (my mom and grandmother have that). So, not sure if there is any good choice for me. I'll be discussing with my doc at my next appointment on the 27th.
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I have always had knee problems, mainly with my left knee which I have had 4 surgeries on. But lately both of my knees hurt a lot. And my right one which has never really hurt is so tight that I can't squat down all the way without pain. I don't know if I should report this to my MO, with it maybe being a SE of Tamoxifen, or my knee doctor, or a new doctor for possible arthritis. I hate that I have to think of all this crap every time I get an ache or pain.
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myspaulding, In my humble opinion it never hurts to check with your doctors all of them. Love, Jean
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Been dragging my heals about going on Tamoxifen since meeting with MO in February. Decided to try it and will call next week.
This past week I found a lump in my left breast and although I knew it was a cyst (grew quickly, hurt, and felt just cystic acne I had for years, well decades really), it made me pause.
The other interesting change is my hot flashes stopped a week ago as suddenly as they started. I'd never had them until a month after my MX. Thinking the stress and hormonal fluctuations brought them on. Not really sure why that is making me more optimistic about trying Tamoxifen, but it is.
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Hi all:
I have been taking Tamoxifen now for 6 years, and my ONC wants me on it for a total of 10. I had not been told when I started it after my BMX that it would cause me to possibly need a hysterectomy. 6 years later my periods because so heavy, my uterine lining became so thick that my GYN obliged me to have a hysterectomy. They did it laparoscopically.
I am one day post surgery and am surprised at how un-sick I feel. Aside from the anasthesia causing POVN (Post Op vomiting and Nausea) I feel better than I imagined. I had the surgery yesterday, have tiny bits of spotting and only mild soreness. Taking Motrin & Tylenol period. Here's a pic. (Sorry it's so huge, I didn't know how to resize it) So, just writing to say what I thought would be a terrible recovery has turned out to be easier in so many ways. Good luck to all dealing with the Tamoxifen + Hysterectomy dynamic.
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My Spaulding,
Wow, this is the probably why I was told my liver numbers were off too. It may be the Tamoxifen! I don't drink alcohol ever either. Thanks for sharing this.
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Has anyone noticed their leg hair growing much slower than usual? It's not a bad side effect, but I'm curious as to why this is happening and hope it won't happen for the hair on my head!
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actually, my leg and arm hair has been growing more, and returning to its original color from white. must be the difference in gender.
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Ha, that's weird, cliff! I heard of hair colour change after chemo, but didn't know Tam could also change hair colour.
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My leg hair grows slower and I'm on Tamo. My head hair is not growing at all.
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my leg hair was originally brown like my head hair, age had turned it white and thinned it. my right arm is still fairly hairy, but the left has been thinned quite a bit pulling on the compression sleeve. guys in my family have always been rather hairy.
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Many of the symptoms folks describe here as SEs of tamoxifen, I have to admit I had before tamoxifen and I think they are menopause-related: slow/no leg hair growth is definitely one of them....
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