Starting Tamoxifen - Spring 2015

Thank you Fizzdon and Jackbirdie.

No, chemo was cancelled a few days before it was due to start, as I was told that as a metastatic patient, "the cancer is already in your blood so Chemo won't work". (I wonder what she thinks of chemo for Leukemia??), also "your cancer is incurable, so chemo won't save you".

This was told to me by our local Oncology Dept Head, since our Oncologists only travel to Taranaki every few weeks from Palmerston North (250Km away). My hubby and I were in shock, but demanded to see an oncologist, so an appointment was made for the following week. MedOnc doctor Malcom Anderson confirmed that the focus was now on control, since there would be no cure, and tried to convince me that Tamoxifen is the drug of choice for metastatic patients. He said that there was no point in putting me through the side effects of chemo, since it wouldn't help.

I would gladly lose my hair, and put up with the nausea etc if I thought it would help, but that choice was not mine to make.

Now that I am no longer in active treatment, do I just sit here waiting for symptoms? How can I just forget about it and carry on as if nothing happened? Can you see why I need a psychiatrist?

Hi all, been on tamoxifen almost a month now. I was terrified to start. So far I have had some leg muscle cramps. I woke up the other morning with some leg pain but it went away the more I moved it. I get hot at night but sleep well for the most part. I felt super weepy today but not sure if maybe that's my cycle trying to start back up after quitting Lupron. I'm hanging in there and hoping it doesn't get worse.

angiel, my friends have said that they didn't notice any change in hot flashes from chemopause to tamoxifen. I'm sure you'll be fine!

I wish I had that issue! I've only been taking it a week and a half but I haven't noticed anything at all.

Hi Angie1: I agree about I could eat everything and have been today. Tomorrow (or is it on Monday) I hope to have more self-control! Although I do not have joint pains so far on Tamox, I was on an antibiotic (a Cipro type but cannot recall exact name) that produced joint pains and was told to take Magnesium tablets. I think I took 400mg/day and that helped quite a bit. Talk to your MO about this as an option to prevent the pain rather than pain rx to treat it once it occurs. Hope you feel better soon so you can resume walking/running.

Hi all, another one to recently start taking Tamoxifen. I started a couple of weeks ago now and my main side effects seem to be mood swings and constipation. I found that, like others, my level of tolerance for bullshit is radically reduced. I fought a battle with deep clinical depression and panic disorder last fall/this spring and was hoping that I had put it behind me. Now that I'm on this med, I find myself looking down the proverbial barrel of the gun towards the same outcome and don't want to go through it again. I cannot be on any anti-depressants besides a baby dose of Seroquel (12.5mg) and only take that to help me sleep at night as that dose puts me out for 8 to 12 hours. Other medications have horrible side effects and my doctors, therapists, etc had their backs against the wall. I have an appointment with my MO tomorrow so I can discuss what's going on. I know the mood swings are mostly related to hormonal changes but that doesn't make it any easier for my family. Is there anyone that has started this medication, had similar situation and had the SEs decrease to the point of not driving everyone around them crazy?

Hi Ladies,

I recognize some of you from other boards. I picked up my prescription for Tamoxifen today. I guess I'll start tomorrow. I finished radiation a few weeks ago and I am feeling the best I have since my diagnosis in September. I originally thought I would be on AI but a recent ultra sound showed that my uterine lining was at peri-menopausal thickness. I will only be taking it for two months as I am having hysterectomy in October due to family history of Ovarian and I have a variant gene in the Lynch Syndrome which if a mutation has a risk of ovarian 15 to 20% (given my mother's history maybe higher for me) and 20% uterine cancer. With the hysterectomy, 0% uterine and 0% cervical and 1% ovarian. I like those odds better. Hoping for minimal side-effects, after chemo it can't be so bad. Good Luck everyone, MJ

Thanks Magiclight! Doing better....now, if only those hot flashes would be more manageable.

Another question.... My MO recommended surgery to have my ovaries removed in December once I finish rads but said he would still keep me on tamoxifen for 5 plus years. I guess I don't really understand as I thought having the surgery would end my need for tamoxifen. Why do I need tamoxifen if I am not producing estrogen ? I realize that I still will have a small amount of estrogen floating about my body, but does it really need tamoxifen - and it's side effects?

How are you doing? I am just starting radiation and have the great debate of which estrogen receptor inhibitor to take myself.

It took me four surgeries to get a clear margins and now I'm wondering if I made the right choice because I can avoid These drugs if I have a double mastectomy.

I to fear the side effects of the drugs and I'm looking for natural remedies to avoid estrogen in my diet.

GoodConstitution,

I had limited problems on radiation, some stiffness and skin damage. I am 5 weeks out now and the skin is healed. I am still tanned that will take a few more months to completely go away. A double mastectomy often negates the need for radiation but had not heard that it alters the decision for hormonal therapy. You might ask your MO to clarify for you, so that you feel right about the decisions you have made. All the best, MJ

Anyone know if there are any predictors of tamoxifen success? I know hot flashes during tamoxifen treatment are associated with better outcomes, but I'm wondering if there's anything to give us a sense of potential effectiveness before starting.

I picked up my Tamoxifen last Friday, started taking it on Saturday. Six doses only but so far so good, I haven't noticed any SEs yet but think it is still too early to tell. Good Luck, MJ

Hope it's OK to jump in here. I started Tamoxifen a month ago. So far so good. I've had a few warming episodes (not really hot flashes), but mostly at night while sleeping. Also, an odd possible SE, I seem to have more acid indigestion, so the doc said to take an over the counter pill daily to help with that. Otherwise doing well on it and hoping for the best!

Good luck to those of you just starting.

I started taking tamoxifen in Feb right after my bi-lateral mastectomy. I have had severe headaches for the past two months and right sided pelvic pain for 6 weeks. I went to the er yesterday and was told I have cycts on both ovaries. I see my oncologist Tuesday to discuss an alternative therapy and I'm interested to find out if she thinks the cysts arre related to the medication. I see my gynecologist on the 17th. Needless to say, I'm not excited about possibly having another surgery. I have had hot flashes too.