Tamoxifen dosage? All for one and one for all!

I started taking tamoxifen in November 2014, I took it every night before bed.  The side effects nearly drove me mad, leg cramps, hot flushes and I didn't sleep more than 4hrs a night.  After my second surgery I decided to take it in the morning with breakfast and the side effects are minimal. I was also advised by my breast surgeon that there are different brand names of tamoxifen, they all have the same amount of active ingredient but different additives. Try to find what best suits you. I am grateful that I have had the support and advice from all:)

Lisa I took tamoxifen for 1year and pain in feet and legs and cramps were dreadful I could not walk and worse in the evening the blackmores magnesium helped me to but it was easily a month, then I was changed to zoladex implants and femara honestly the improvement in pain was amazing . In feb this year I had ovary removal and a hysterectomy no more zoladex just femara , more improvement, I'm also on daily oral chemo for a rare blood disorder I have, I still get sore feet aching legs in bed and cramps but I can live with them. I get sad sometimes but I seem to pull myself out of it. I hope you can get some relief. Regards adean 

Hi Lisa.  I can't believe the drug companies have never done proper studies into dosage.  My Oncologist said it was not in their interest.  We are all different, our physiology is different.  If you are able to hang in there it is the best thing to do according to Oncologists.  However, I did read only 42% of women complete the 5 years so you have to wonder where they get their "percentages for survival taking them".  I really tried to take them but found the side effects negated any quality of life -they especially impacted on my mental health. Had I stayed on them I would have lost everything. I have thought about it long and hard and wondered how I would feel if I was one of the statistics that got secondary breast cancer.  How would I feel then?  Would I be filled with regret?  But then I thought, probably not - I couldn't have survived on the meds anyway and it doesn't guarantee you won't get secondary breast cancer anyway - so how would I know?  Anyway, good luck - keep going with it if you can.  Suexx

How amazing do you feel for those times you get a break from tamoxifen? Unbelievable isn't it? I think we just plod along feeling crappy and it's not til you stop taking it for surgery or whatever and are shocked by the change in yourself!

I look forward to hearing how you go with the change.

lisa

Thanks Jane, it sure has been a side effect roller coaster. First three months challenging, then next 12 months nothing, then last 6 months a nightmare. Possibly not helped by my body deciding menopause was not for me either. I'm really looking forward to having my ovaries removed and there being no way for me to come out of menopause.

Lisa

Hi Suzie, thanks for your reply. Apparently the drug companies looked at dosage some years back, 40mg a day vs 20mg a day. They decided there was no difference so 20mg it was! I guess I'm wondering if they looked at 10mg vs 20mg whether there would be any difference? My oncologist said the drug companies wouldn't ultimately research that as if it was true they would lose $!

so very frustrating to those that take it hey? 

I am interested that your body said no to increasing tamoxifen because whileI was fine for probably the first 12 months, my body has since put in major complaints about me swallowing that pill.

As my body decided medication induced menopause was not for me, I'm also dealing with horrific periods every 28days which also impact on my life and everyone's around me.

really fed up right now.

lisa 

Thanks for your insight Robyn. I will try the magnesium again. Wasn't overly helpful in the past but you worth a crack.

I did try and take 20mg again the other night and was awake all night with cramps, joint pain and insomnia. I really don't think this drug is for me. It has  also been suggested that I try half in the morning and half at night. Can't hurt anymore than it already does to try.

one of my biggest frustrations is being a rural patient who has had to coordinate my whole treatment. None of my drs talk to each other and it just seems like they treat me like I'm an island in the middle of the ocean. Drives me nuts.

i have to be able to function to work full time 70kms away from home, and look after my family. I just don't think they get that.

Lisa

Hi Lisa,

I was talking to my naturopath about hormone therapies yesterday - she is also a practicing oncology nurse so I do trust what she says. I had ovaries, tubes and uterus taken out 11 days ago (I'm 42), and I see my Oncologist on Tuesday to do the hormone therapy change over from Tamoxifen to something else. I have to admit the last 2 weeks without Tamoxifen have been heaven.

We were discussing the something else and was it better or worse than Tamoxifen. The naturopath said she is actually better at helping the symptoms from the Femara (her preference) and Arimidex or Aromasin over Tamoxifen and believes that they are generally better tolerated than Tamoxifen. So try the Vit D(my gyny onc insists it be taken) and the Magnesium (also approved by my oncologist and BS) also plenty of omega 3 rich foods can help with inflammation while you wait for your surgery but you may find that the drug change is actually a blessing.

Hoping you get some relief,

Jen

Hi Lisa, I think you've raised a really interesting point and one which I believe has a lot of merit in terms of needing further study / investigation because although Tamoxifen has been around for a very long time and has proved effective in treating (and possibly preventing) breast cancer, the side effects for some people seem to be considerable and is the reason why the recent study on hormone therapy mentioned on the BCNA website (http://202.129.142.90/understanding-breast-cancer/general-breast-cancer-research/) shows that many women discontinue using it after a period of time because of the side effects. Given the proven effectiveness of this treatment this is not an optimal situation and I would hope that down the track there will be further studies looking at the effectiveness of different dosages. 

I have been on Tamoxifen for almost 3 years (with a brief switch over to Arimidex) and I have to say that the first 12-18 months were very difficult, with severe hot flushes, leg cramps and joint pain. I remember complaining to my breast surgeon about the hot flushes, sitting there drenched in sweat, and he took one look at me and said "well at least we know it's working", which I know he meant kindly but didn't make me feel any better!! Fast forward to now, these effects, while still there have dropped off considerably and I only have a few hot flushes a day (made worse if I drink tea or coffee, but sorry I'm not giving these up) and the leg cramps and joint pain are much better due to using magnesium supplements (thanks Robyn and yes, my oncologist is also OK with that) and Vitamin D tablets as well as getting a bit more exercise. I also switched to having my Tamoxifen at night and things seem better (don't know why!!).

I really sympathise with you Lisa about feeling like an old woman. I was 49yrs was diagnosed and for a long time I found it very difficult to move as my joints were so stiff and sore and wondered if I could continue. I'm glad I have persisted as I know the Tamoxifen is incredibly important in lowering my chances of recurrence so I would recommend talking to your oncologist about using magnesium and Vitamin D to see if they help you, and like Lisa says, you can always get a second opinion if you don't think your concerns are being taken seriously.

Best of luck, I hope things settle for you soon. Jane xx  

Hi Lisa. My Oncologist told me dosage studies had never been done so they don't know. It wasn't in drug company's interest to conduct them. Side effects on these bloody drugs were a lot worse for me including mental illness.  I only took 2 a week which seemed to be fine for me then my Onco put me up to 3 a week. After a while i had to stop. Next time you see you Onco ask about the dosage studies?  Would be intetested in the answer. These doctors need to understand one size doesn't fit all.