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Tamoxifen-smoxifen . . .

1 Aug

Well, I just upped my 1/2 dose of Tamoxifen to the “full” dose (I did this on Saturday). It was not so great . . . I was nauseous pretty much all day and evening and even felt a bit that way this morning (Sunday). I am supposed to now be taking 20 milligrams per day (I started by taking 10 milligrams per day . . . after having a bad experience taking the full dose of 20). My oncologist recommended that I re-start the Tamoxifen by taking 20 milligrams every other day. I opted for taking 10 milligrams every day.

I haven’t taken it every single day . . . there have been some breaks due to taking an antibiotic, for example . . . I didn’t want to combine the antibiotic with Tamoxifen. Also, had a few week break of the Tamoxifen after I was in a car accident . . . was prescribed a muscle relaxant . . . didn’t want to combine that with Tamoxifen either . . . so, I haven’t been taking the 10 milligrams every day, but, getting there.

So far, I have had very few side effects with the 10 milligram dose. No hot flashes really, maybe an occasional one, but, not very intense. And, the nausea is only for a brief period of time, about an hour or hour and a half into taking the medication (this was the 10 milligram dose). AND, what I found was that if I took the 10 milligram dose before bed, I would not experience any noticeable side effects.

However, as soon as I upped the dose to 20 milligrams, I really felt unwell. I am splitting the dose up over the day (one before bed and one in the am). But, it doesn’t seem to make a difference, I just feel sick with that dose.

I have done some research and there really isn’t a lot of certainty about what the appropriate dose should be . . . . while most all sources state that the appropriate dose is 20 milligrams, there really has not been research on what the proper dose should be . . . there is, however, currently a clinical trial on this very aspect – the proper dose.

There have been some small studies that seem to indicate that taking 10 milligrams is just as effective as taking 20 milligrams. But, these studies were small and do not seem to be conclusive. Studies were done on the effectiveness of 20 and 40 milligram doses of Tamoxifen and the results indicated that there was no difference in the effectiveness of Tamoxifen whether it was taken in a 20 or 40 milligram dose each day. However, with the 40 milligram dose there were some toxicity issues. Hence, the recommended dose of 20 milligrams.

Unfortunately, as of yet, there have not been extensive studies on the effectiveness of 10 versus 20 milligram doses. This is currently underway, which is good. But, it doesn’t really help me with my dosage right now.

I am somewhat inclined to think that the 10 milligrams is enough for me . . . but, I am not sure that I want to diverge from what my oncologist wants me to do.

Well, I am rambling on here . . .

I guess what i am going to try to do is to do the 20 milligrams dose for a bit and see how it goes. So far, I experienced nausea and some pretty intense hot flashes. I didn’t take any Tamoxifen yet today (it is now Sunday evening) and I have felt much better since about mid day. We shall see how it goes. I just wonder though, if it makes more sense to stick with taking 10 milligrams . . . maybe the fact that I am not having significant side effects with the 10 milligram dose means that it is the right dose? Or, maybe it means that it is the wrong dose . . . that I need to have those side effects . . . as that is what evidences that the drug is working?

You see how crazy making this all is? That is, if you allow it to be . . . ๐Ÿ™‚

Well, enough of Tamoxifen talk.

I had a busy weekend. I am tired, but, in a good way. Tired from playing music and spending time with wonderful friends . . . new and old.

I will post pictures up here soon from our gigs this weekend (two, count ’em, TWO gigs this weekend . . . PHEW, so tired)!

Well, wish me luck with the Tamoxifen. I was going to take another 10 milligram pill tonight, but, I think not. I am already in bed. I think I will take 10 in the morning tomorrow and then another 10 before bed, like I did yesterday. Hopefully it will not be as bad as Saturday’s 20 milligram attempt. ๐Ÿ™‚

Love and peace,

Lisa

Days & Nights Are Upside Down

11 Feb

I am still trying to turn my days back into days and my nights back into nights. Although I have been off of the Tamoxifen since Sunday night (it is now Wednesday) night, I am still having trouble with sleep getting to sleep, staying asleep – sleeping at all in fact. So, I hope that tonight will be a better night for me. Especially since tomorrow is another Herceptin Treatment. These knock me out pretty good – I get extremely tired and then usually spend the weekend feeling like I have the flu (aches, fevers – that kind of stuff). But, here’s to hoping the treatment does not cause these side effects this time around.

Either way, I will get through it.

I feel good about the fact that my oncologist at UCLA is so responsive – I called with complaints of the side effects I have from the tamoxifen and she immediately said to stop taking it for two weeks and to have me come in after the two weeks (have an appointment already) and then we will discuss other options than Tamoxifen – or the possibility of resuming Tamoxifen with the assumption that my body will eventually adjust to it.

I know that she wants to have me off of the drug to make certain that the side effects that I have been having (dizziness, nausea, unusual pains etc.) are from the drug and not from some other cause.

So, that is good. I am pretty confident that the side effects are in fact from the drug. i hope so. If not, then it is a battery of other tests – one which ย I can not even have yet – a Brain MRI. So say some prayers for me on that. I am keeping my fingers crossed that all of the side effects cease (most have diminished significanyly since I have stopped taking the drug). ย Well, wish me luck for tomorrow’s treatment!

Lisa

Off of Tamoxifen for now

10 Feb

Hello All,

I called my breast cancer oncologist at UCLA to tell her of some of the symptoms that I have been having since I started the Tamoxifen. She has asked me to stop taking it for two weeks (to make sure that the side effects are from the drug and not from something else) and then I will see her in two weeks for a re-evaluation and to consider some alternative to taking Tamoxifen. I am not sure what that would be.

My chief complaint about taking the Tamoxifen was the “amped up” feeling (quite intense) that I would get within a short time of taking the pill (and I was only taking a half dose – had not yet worked my way up to the full dose, was gradually trying to do that). This “amped up” feeling is what has kept me from getting any sleep and has really messed up my days, nights etc.

But, I was having other side effects – dizziness, nausea, numbness in my limbs and some other odd feelings throughout my body (kind of hard to describe, but the best way I can describe it is how you might feel about 4 hours after coming in contact with a jellyfish – in my arms and lower legs mostly – I would get this stinging kind of sensation. Very strange.

I know that my doctor has some concerns that these side effects or symptoms could be from something other than the drug. But, so far, the side effects have all virtually gone away in the less than 48 hours since I have stopped taking the drug. Last night I slept so well and I didn’t have any of the symptoms I had been having except for a little bit of stinging and numbness – but not nearly as pronounced as even the day before. Now tonight, I did not sleep – or I should say – I have not slept yet (it is 4:30 am right now, not so great). But, the insomnia side effect is not one of the ones that my doctor is concerned about as it would not be suggestive of any other problem. ย Anyway, I am sure the side effects are from the drug and not something else. And, I am just so glad to have a breast cancer oncologist who is smart, on top of things and knows what she is doing!

Okay, signing off for the night/morning. Hope to be asleep very soon.

L.

I can’t sleep!!! Aaargh!!!

8 Feb

I’m on my third night in a row now of no sleep. This is awful. The drug I am taking now (Tamoxifen) is causing insomnia like crazy. I am hopeful that I will adjust to it over time. Perhaps taking it at a different time of day will work better. But, the idea was to take it in the evening so that I could sleep through the side effects (nausea, dizziness and just a general not feeling so great feeling – kind of hard to explain – just uncomfortable).

I haven’t had very many nights with good sleep in a very long time, but the last three have been pretty much zilch – maybe an hour or an hour and a half and that is it. I either am wide awake until 4 or 5 or 6 am and then fall asleep for an hour or so OR, I fall asleep (after a lot of work getting to sleep – melatonin, meditation, a whole routine and it works to get me to sleep) but, then Iย wake up an hour or so later. That was the case tonight – I finally fell asleep sometime after 1:30 am only to wake up at 3:00 am and completely unable to go back to sleep.

I can’t do this – I have to figure out a way to get rest, real sleep. It is SO important for my getting well and recovering, healing. And not to sound vain, but, I look sicker now than I did during chemo – I have such dark circles under my eyes now – presumably from a lack of sleep. I just have to fix this situation.

I tried sleeping pills way back at the beginning of this thing (when I was first diagnosed). I took sleeping pills initially because I couldn’t sleep because of anxiety and fear and, well, just all of that normal kind of stuff that would (I presume keep any cancer patient from falling asleep). I had those problems before cancer – the occasional bout with insomnia simply because I had too much racing through my mind or I was anxious or worried about something. Who hasn’t experienced that in their lifetime?

But, those pills gave me headaches and so I stopped taking them and replaced it with Melatonin and just a better sleep routine. And, largely that worked. But, now, this new medication is just really messing up my clock I guess.

Oh well, I am bound to figure it out, I have to because this just does not allow me to function well.

Wish me luck and any suggestions are welcomed (I am going to call my oncologist’s office up at UCLA today and see if I can speak with her nurse about it, maybe get some help or advice through her).

Well, I think it is now time for breakfast.

Goodmorning/Goodnight (in case I can somehow get some sleep in today – maybe after a bowl of oatmeal) ๐Ÿ™‚

L.

Sleep is a beautiful thing!

4 Feb

Last night I slept for the longest stretch in months – over four hours, maybe closer to five – yippeee! I can really feel the difference. I would love to get 6 or 7 or really, 8 hours! But, last night was a definite breakthrough in that I was not waking up every 1/2 hour or hour. Up until last night, the most sleep I was able to get in one stretch was three hours. Not so great.

Anyway, I am still pretty darn tired, but, wow it was nice to sleep for such a long stretch. And, I presume it will just keep getting better that way as I adjust to the new medication.

I do still feel kind of a surge of energy (or a feeling of having just had way too much caffeine) after I take the Tamoxifen at night, so it makes me a bit restless. But, that seems to wear off and I ultimately do get to sleep. It sounds as if i should consider taking Tamoxifen in the am instead of the pm. But, it causes some other symptoms that I do not think I would want to deal with during the day – eg., nausea, dizziness.

But, I’ll have to see as these symptoms seem to be lessening. So we shall see. I just have to keep taking it, increasing the dose gradually until I get to the 20 mg dose. So far this method (of starting out at 5 mg for a few weeks and then increasing to 10 mg – that is where I am at right now – and I will then continue to increase it by 5 mg until I reach the 20 mg dose I am supposed to take) seems to be working a lot better than just taking the 20 mg all at once – that was awful. I was pretty sick from one 20 mg pill in just an hour or so after taking it.

Now, however, by taking these lower levels and gradually increasing the dose, my body seems to be adjusting to it. It makes sense. Hopefully, as I build up to the 20 mg dose, my body will continue to adapt and I will continue to get sleep at night ๐Ÿ™‚

We’ll see. Oh, and isn’t this stuff exciting? I probably should find something else to write about or no one is ever going to read this thing ๐Ÿ™‚

Tamoxifen

3 Feb

On the Tamoxifen front, I seem to be adjusting to the increased dose (I started at 5 mg, am now at 10 mg, where I intend to stay for probably 1 1/2 to 2 weeks). I felt definite increased side effects the first three nights I took the increased dose. But, I think I am adjusting to it now. I do have a little bit of nausea, but not too bad. One of the big side effects that I hear women complaining of the most is hot flashes and weight gain.

I do have the occasional warm feeling, but the weight gain, I don’t see it. And, it isn’t on the list of side effects for the drug – instead, one of the possible side effects is loss of appetite. I would have to echo that one. I am still losing weight and I do not need or want to lose any more! In fact, I would be quite pleased to add a few pounds in the next week or so if I can. But, it is a struggle to eat enough in one day. I am working on it. The thing is I eat a low fat diet (and I am supposed to for my health, reduces the risk of recurrence of cancer, for example, as does exercise). So, keeping with the low fat diet and filling up so quickly, well, it doesn’t bode to well for me in terms of trying to put on a pound or two. I am not too skinny, I am in a healthy range (but at the lower end of it for my height etc.).

And, I just don’t want to lose anymore weight. And, it is not like I can just go have a chocolate milkshake everyday (that’d be an easy way to add a 1,000 calories or more in a day) ๐Ÿ™‚

But, it’s just not part of what I can eat. So, there’s no short term, quick fix solution here. I just have to find a way to eat more each day. I do want to and need to gain some weight before my next surgery, so I will be doing my best to do that.

Well, wish me luck ๐Ÿ™‚

L.

Tamoxifen Blues (probably not a great song title) :)

1 Feb

Hello All,

So, one of the things that I haven’t mentioned on here yet is the fact that I am taking a new drug (yippee . . . that is a very facetious yippee, by the way). The new drug is Tamoxifen. It is given to pre-menopausal women who have ER+ cancer (cancer that is estrogen responsive). Tamoxifen does not block the production of estrogen in my body. Instead, how it supposedly works is to block the effects of estrogen in my body. I have a lot more to learn about this drug (how it works, etc.).

I generally do the research long before taking the drug. But, Tamoxifen has been around for 30 years of more and is the standard drug used as a way to help reduce the risk of recurrence – of the cancer coming back. So, I am supposed to be on this drug for 5 years. I have met women who have been on it for 4 or 5 years (some stop taking it earlier than others and some, try it out for a few months and stop and some, just don’t take it at all).

As I want to do everything that I possibly can to reduce the risk of recurrence, I am taking this drug. But, it is definitely something that I have to adjust to. The normal dose is 20 mg per day. I started with that dose, took it as prescribed and within about 2 hours was nearly upside down – the room was spinning, I was very dizzy and had to walk holding on to the walls and furniture just to make my way to the restroom.

So, the next day I got on the internet and read several breast cancer forums where the topic was Tamoxifen. There were many women who said that after trying the drug for a few months – decided not to take it again because the side effects were just too great.

Then I came across a woman who said that she had a lot of problems with the drug initially (when she was on the 20 mg dose), but really wanted (as, of course I do) to stay on it for the benefits it provides in helping to reduce the risk of recurrence. She said that since she has always been sensitive to medications of nearly any kind (me too), that she decided to stop taking the 20 mg dose and instead,”build up” to the 20 mg dose. She did this by taking 5 mg for a week, then 10 for the next week, then 15 the next week and then finally up to 20 mg the following week.

She said that by doing it this way, she did not have the symptoms that she originally had when she just started taking the 2o mg dose (without gradually building up and letting her body adjust to increases in the drug over time).

Well, after taking that one 20 mg dose and having a pretty bad reaction to it, I decided to wait on taking anymore until I could see my oncologist up at UCLA (it was only a few days later anyway, and I just did not want to go trying something out without her input).

Well, I asked her about that and she said that it was fine to start out that way. So, that’s what I am doing. I took the 5mg dose for about 2 1/2 weeks. I had symptoms at first (milder form of what I had experienced with the one 20 mg dose) and then eventually virtually no symptoms as far as I could tell.

Well, I upped the dose this past Friday night to 10 mg. The first dose kept me up all night (it can have the effect of either making you drowsy or causing insomnia). I experienced some dizziness and nausea in the night, but nothing too bad. Then Saturday, again, another 10 mg dose, more symptoms than the night before. Then again last night and wow – more symptoms than the prior to nights. I did not have, however, the insomnia at all, instead I was quite tired and went to sleep pretty easily last night. But, I woke up in the night several times with symptoms.

Still, since I did adjust to the 5 mg dose – over time – I think that I will eventually adjust to the 10 mg dose and then once I do, I will increase it up to 15 and so on. It is clearly pretty strong stuff. I woke up not feeling too well from it today. But, what are you going to do? Or, I guess I should say, what am I going to do – – pretty much everything I just said – gradually increase the drug over time until I adjust to it, which I hope my body will do – it is amazing how just upping it from 5 mg to 10 mg this past weekend has made such a difference in how I feel. Ugh. But, I will get there.

So that is my Tamoxifen story for now. I will conduct my own research on it and see what I can learn about the drug and any way that I can through diet and/or exercise perhaps reduce the side effects and or compensate for anything else the drug might cause.

How’s this for great advice – when I picked up the drug – the pharmacist told me “not to read the list of side effects” . . . nice. ๐Ÿ™‚

So, that is my Tamoxifen story so far . . . we’ll see how it goes the rest of the week.