Bottle o Tamoxifen
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I started Tamoxifen on Dec. 30. Barely a week and my neuropathy feels worse and sex seems impacted, too. Does T work that quickly? Is this what I would feel if I were having a natural menopause? Will exercise help any of this loss of sensation? Of all the treatments - lumpectomy, chemo, radiation, this is the one that I have been dreading the most. Someone give me some perspective, please.
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I looked at my bottle of Tamoxifen for 2 weeks before I was actually able to build up the courage to take it. I was so scared of the SEs. Now I'm almost at 4 years and find that I look at it as my safety net. My MO is talking about taking me off after doing a Breast Cancer Index test depending on it's results. I'd rather stay on it just to be on the safe side. The point I'm making is while Tamoxifen seems scary, your opinion of it may change over time. I look back and now realize that if I'm able to make it through BC diagnosis and treatment, then I'm certainly not going to be scared of a little white pill. We are all so much stronger than we think and so much smarter. If you get SEs, just come here and ask for advice on how to work with them. Most of you have done chemo and rads. I didn't but I can't imagine Tamoxifen being worse than those 2 treatments! There will always be a few who have severe enough SEs that they can't manage, but the majority won't. Some won't have any and some will have the usual. These forums can help. Looking back, if I had to offer my "tricks" for dealing with SEs, it would be suppplements (i.e. turmeric, ginger, magnesium, Vit D, fish oil, baby aspirin), a really good probiotic and a regular exercise program even if it's just walking every day. The exercise keeps your joints lubricated so the pain that MIGHT get isn't as bad. And if you throw yoga into the mix, it also works great on keeping joint pain at bay while getting your mind right after the horrors of BC and it's treatment. All you girls worried about starting Tamoxifen.....you got this. You've taken everything else and thrown it back in breast cancer's face. Do the same with Tamoxifen.
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I understand the fears of SE's. Mine are arm cramps and hot flashes. But every medication has SE's. If you needed insulin, would you not take it for fear of the SE's? No. Of course not. You can always start it and stop it if the SE's are too much. Go look up any medication and see the mile long list of possible SE's.
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I'd add that there are other options besides Tamoxifen (different pills in that class with different SE's). Tamoxifen is the "gold standard" for premenopausal women. I'd make sure you are on some kind of depression or mood stabilizer drug. My MO told me that he believes that patients should start tamoxifen 4 weeks or so after rads are finished because even though the daily sesions are done, the rads keep working on you and making you tired or other SE's from rads. I think also he doesn't want patients to muddy the waters thinking their proonged rads SE's are due to tamoxifen, and then decide tamoxifen isn't worth it. My BS encouraged me "just stay the course for the first 4 weeks which are the hardest for tamoxifen". There are a LOT of people who quit taking Tamoxifen even though it is said to be "well-tolerated".
I started Tuesday night and go hot and headachey and nauseous within 6 hours. I felt like I had seasickness or a hangover or morning sickness. Took the second pill 12 hours later and the same. Got really depressed, thinking I don't know if I can do this for 5 years. (I do verrry poorly with nausea.)
THEN, I read what people here had to say, said screw it, took the third pill last night in the midst of a big dinner, then took Pepcid AC and 2 Xanax and went to bed. This time I didn't wake up in the night sick and headachey and hot. I took pill #4 this morning, and ate a big breakfast at 8am (at this rate I am going to get fat--so much for trying to lose a few pounds that have crept up over the last 3 years). Started feeling nauseous in a meeting at 9:45 so got a giant bowl of fruit salad and a fruit and nut granola bar and water. Ate this and felt a bit better.
I'm glad not to be feeling as awful as yesterday, but I just cannot be eating every 3 hours like a sick person. I want this stupod cancer behind me--I don't want to be "that woman with breast cancer" or "mom is feeling sick again". I am going to keep taking Pepcid AC or Nexium...
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40% discontinue anti-hormonal therapy. It's some sort of weird medical mythology that it's well-tolerated. My MO says side effects are a big problem that they discuss a great deal with each other.
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@ksusan , this does not remotely surprise me... especially if people have low oncotypes...
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Wanted to also add that regular acupuncture (along with daily exercise at least 30 minutes) has helped a ton with hot flashes, both pre and post cancer.
also no alcohol including wine. 5mg of melatonin each night at tamoxifen time + dark room no glowing lights really helped with sleep.
for diet, which i think is essential for natural estrogen control, I have found dr. michael greger at www.nutritionfacts.org to be very helpful. His book out now 'How Not to Die" and entire chapter devoted to breast cancer prevention and survival. There are many things we can do.
I'm lucky that I'm doing okay on SE so far and hope I can continue with tamoxifen for 5 years but no matter what I'm taking time/effort to do things to support my own body and immune system to stop any more cancer from growing.
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I will have to say that I really struggled with nausea about a year into Tamoxifen,and I struggeld for almost a year. Eventually I found a good probiotic (at the suggestion of my massage therapist) and was surprised at how quickly it ended the nausea (and my burping and bloating). Looking back, I think my system was really messed up from all the anesthesia from the surgeries and it just needed to find it's balance. My dad is a retired surgeon and said anesthesia can do really crazy things to the body so you have to make sure you get your system right afterwards. Lots of doctors now tell patients to start taking probiotics before surgery so they don't have this type of problem. And I truly believe Tamoxifen magnifies anything you already have going on so maybe doctors should give us a "preTamoxifen" list of things that will help mitigate the SEs!
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Hello everyone,
I've been reading but never posted in this thread. I've been on Tamox on and off for 1.5 years, which means I couldn't take all the SE's and had only been taking it 3x a week. Recently started to have some spotting and this past weekend there was blood when I cleaned myself. I'm 61 this year and I've also had cramps on my left side which radiated to my back and leg. I'm about to call and make an appointment with a OBGYN. I wasn't sure if anyone else had experience something like this. Thanks for your time.
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I'm 56 on T for 3+ years and I'm having similar issues. I'm going in for yet another tvu and biopsy later this month. The chances of this being anything sinister is remote, but best to get it checked.
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I am one of the terrified Tomoxifen girls and still cannot wrap my head around taking a pill that could cause a stroke or blood clot that may be fatal! Or trading breast cancer for uterine or bone cancer. I know the rare SEs are not likely to happen, but every time I touch that bottle, that is the first warning label I see. Each person is different and must weigh the risks vs. the benefits! Yes, I know, cancer can be fatal. You can always go off it if the side effects are too much for you. Yes, unless they are irreversible, or again fatal. Do I want to prevent a slow death by having a quick one? I know none of this is likely, but these thoughts really work on me and I cannot help but feel so angry that I have to risk my life to possible save it! Sorry for the rant, I am just so raw over this decision!!! I admire those of you who jump in and just do it and take whatever SEs come with it and still keep going! You really are some of the toughest people I have come across!
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I take routine ambien because I went for weeks on little sleep. Of course I had a hysterectomy shortly before starting the tamoxifen. I think having the surgery was good, because all the problems I have had, I attribute to the surgery and not the tamoxifen (even though that pill could be the cause) it's not easy. But I figure I would go through this crap anyway, so might as well take the dang pill!!! My memory is worse, I'm tired all the time, have new vision problems, have hip and back pain, had to start an antidepressant and sleeping pill. I took 3 meds a year ago and now take over 10, including supplements . ##CANCERCANKISSMYASS!##
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I totally relate to the fear. I too stared at the stupid pill for what seemed like forever before I popped it. Now it's the most important pill I take. Been on it for about 6 mos and still no noticeable se. Before BC I struggled with sleeping and often got the startles before falling asleep & according to my DH, I jerk a lot while sleeping. Maybe it's a little worse now but it's hard to say that it's because of the tamox since I did it before taking it. I take melatonin now to help me get to sleep & count 6 hours a good night and keep taking the tamox because I want to do everything I can to keep BC from coming back. For those of you struggling with starting tamox, I would recommend taking it to see if you have any se & if you do can you manage it. You can always stop. Sending you all positive vibes
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Thank you
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Thank you to everyone for the feed back, I'm still scared, I just, you went to my RA Doctor today and he said, TAKE THE MEDICINE!!!
He said you don't want this to come back to HAUNT YOU and how would everyone feel like your husband, your kids, family and friends if you just threw in the towel and decided not to give the medicine a try to keep this EVIL WEED at bay and this is what I call it but throwing in the towel and the other stuff is what he said to me today. I'm thinking of starting it in a month around the end of the month to give the RAD a chance to be out of my system maybe?
I guess but I don't want this EVIL WEED in me. I didn't think I would get such a response I really felt like I was alone not sleeping over this, crying and throwing a pity party for myself and only I'm invited. Well now I'm inviting you all unfortunately, I'm sorry we're going through this but its nice to know I'm not alone thank you. I still feel awful about this MEDICINE crap but I'm gonna try to do it by the end of the month with praying for no horrible SE's Thank you.
Lots of love and laughs always, Cinnamon
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I started a week after radiation ended. As I've mentioned earlier in this thread, every morning when I take the pill, I say, "Thank you, tamoxifen."
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Those worrying about side effects of Tamoxifen, completely understand: a couple of thoughts that helped me...Most do not have horrible side effects, yes some do but you won't know until you give it a chance; I promised myself that I would do everything to fight this terrible disease and that includes endocrine therapy; you can stop or switch drugs if the SE's are too much; it can't be any worse than 6 months of chemo, surgery, and radiation. I have been on Tamoxifen for 18 months and can not specifically identify any side effects attributable to Tamoxifen versus normal aging and menopause. I gratefully take my daily dose to expect it to keep cancer away. Good Luck, MJS
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I started Tamoxifen on evening of Nov 1, 2015. So now it's been a little bit over a year. I think our minds also play a role in this. For me. I picked that day because it is one of my favorite Religious Holy Days. I said a Prayer & started the medicine.
And Cinnamon, it's so true what your RA said. Are my loved ones more important than my fear to motivate me to give it a try? I am fortunate to not have any noticeable SE. So 1 down, 9 years to go!
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MJS, I can honestly say that tamoxifen was, for me, absolutely worse than my 8 months of surgery, chemo, and radiation.
You are right though, the majority of people don't suffer anywhere near that bad.
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If 40% stop taking a life saving drug, the SEs are rough.
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I was supposed to restart my tamoxifen at Christmas and that was with me putting it off already for 4 weeks. I tried the medicine and had nasty side effects. They told me to stop and then restart at 10 and then go to 20 after 2 weeks . I did. I had nasty side affects again. This time they included hullicinations . They didn't like that so they took me off them again and told me to restart in 2 weeks. I said well maybe if wait another month until after Christmas. 6 weeks after stopping the medicine I finally started feeling better. It took 6 weeks. It was Christmas Eve and I could finally remember what it felt like to be me again. Now it's Jan 5 and I still just can't take that pill. What is life if I am not able to enjoy it. I want my kids to remember me laughing and dancing and being goofy not stuck on a couch with no energy and pain and misery. I just can't decide if I can take that darn pil
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I really like my oncologist at UC Davis. Helen Kent Chew.
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I'm so glad that I don't know whether the new problems are from the surgical menopause or the tamoxifen. It keeps me taking that pill no matter what. I just couldn't live with myself if I didn't try everything I could. I would recommend everyone try it. The few days I have left home forgetting to take my medicine, I about panicked and took that pill as soon as I got home!!!!
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I'm coming up on my first anniversary of taking that first pill. I would have to look back but I think Jan 10, 2016 is the day. I was just like everyone else, been through it all and just wanted to get back to being me but you know we can never go back. We have to move forward. If it's one week, one day, one hour, one minute at a time, we have to move forward.
That being said, I told my oncologist in April and October, I haven't had a single side effect that I couldn't blame on something else. Chemo, menopause, normal aging process. I get cramps in my legs and feet while sleeping, but not nearly as bad as the used to be, still take a nice big drink of water to bed. I work out on a semi regular basis so i have muscle pain that I blame on that. I get sore muscles from sitting on my arse all day at work. My eyes are still dry and I have trouble with the left one but that's been that way since chemo.
We make the decisions that are right for us. I know that taking the tamoxifen will increase the odds that I will not have a recurrence and will be here to see my kids grow up and become productive citizens and I might get to be a Granny. But i don't know that that might be the case without tamoxifen. I can tell you that quality of life means the world to me so if I was suffering debiliatating side effecs I would be studying the odds way closer than I have.
I think that my post my or may not be helpful but the intention is to let you know that you should try it and see. In the end tamoxifen decreases the chances of a recurrence, it isn't proven to prevent it. If you have debilitating side effects that affect your quality of life you can determine the impact on the odds of recurrence with out tamoxifen vs. how you are feeling on tamoxifen. There are always options.
All the best to you.
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Mollie and Loving: Thanks for the positive energy to keep us going. Yes, I am not sure which treatment the SEs are coming from. I am very sure the leg pain is CIPN, but my foggy brain is getting worse and it's a side effect that could impact my teaching career greatly. It doesn't make sense that chemo brain could be getting worse.
Mom2: To help me with the SEs, I am trying to figure out if there is alternative care to help me cope. Perhaps some acupuncture will help me through the next few days. I know that I have to work harder on getting some gentle exercise. I am also seeing a therapist who specializes in oncology. Very, very helpful. Stay positive and keep trying to do your best. ((Hugs))
I am post-menopausal and thinking of going over to AIs. But I hate the thought of not knowing what the new SEs will be. At least I know the T.
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gardengypsy....I totally agree! Why is a 40 percent drop out rate ok with everyone??? My MO at a major university NYC hospital told me the drop out rate for all anti hormones is 50 percent. Add those who stay on the drugs and tolerate the SEs, and thats a huge number! Why are we not screaming for better treatment options? I'm not disputing the importance of these drugs and I'm happy for anyone who is doing well on them. I just think we can do better.
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dtad- Do you mind sharing why you do not take Tomixifen? I may have missed an earlier post, but am curious.
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Sometimes during the night I experience very hot legs and end up throwing the covers off and back on again after they cool off. I'm not sweating, just feel like my skin is on fire. I have been taking 3mg of Melatonin before bed so I can sleep through the night, but I feel that it is not working. This also doesn't happen every night so I do not know what the cause is. I've been on Tamoxifen for almost 1 year and began monthly Lupron injections in August.
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dtad, I totally agree that there needs to be more options. 50% of women not continuing is not a good percentage for success. And I'd like to know what the percentage is of the people who do take the medicine still end up with a recurrence. I bet you if you took all of this into account you would find a very low number of success overall. I understand that we are dealing with cancer and that treatments in general are brutal. I also understand that many other cancers don't have any options at all. For this reason I am grateful for tamoxifen. But these side effects are life changing and very long term. 5 to 10 yrs with drastic side effects is a lot to endure. I don't believe tamoxifen is the golden answer they are looking for and we need to continue finding a way to battle cancer and still have some life while we are alive.
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Tiny Dancer~ I have been throwing the covers off and on all night long for years!
As reccomended by my ND, I take 20 mg. of Melatonin a night. Along with MM, It helps.
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