Hello,
I would like to describe my tamoxifen journey and I think this tread is as relevant as any others.
Background info:
- diagnosed in August 2013, age 37 year old, with grade 3, ER+, Her2+ on right breast
- surgeries: lumpectomy in August 2013, mastectomy + reconstruction in October 2013
- initial treatment: FEC-T (6 cycles) + 18 cycles of herceptin
I started my hormonal treatment 3 weeks after the last cycle of taxol with 20mg of tamoxifen daily (March 2014). As most people have described it before, I had a lot of side effects (physical and mental) and I carried on hoping they would settle down. However after 6 weeks, I was a complete mess (very tensed, crying for no reason, not feeling sad but not enjoying life etc...) and my oncologist gave me a 3 weeks break from tamoxifen. We also discussed counselling, CBT and anti-depressants. At that point, I refused the anti-depressants as I thought if I really had a problem with my cancer diagnosis, I wanted to deal with it rather than hide the problem behind some drugs.
So I booked myself for counselling and met a fantastic person. At that point, I had been off tamoxifen for a few weeks and like someone mentioned before, it was like someone had flicked the switch and I was back to feeling normal. The first few sessions of counselling were very useful as it really looked like I was naturally using all the appropriate mechanisms to respond to the challenges of life. Half way through counselling, my oncologist suggested to restart tamoxifen by taking a lower dosage (5mg instead of 20mg - after all, 20mg is one size of medication fits all and I am only 1.60m and 50kg). Straight away, I felt the side effects coming back and I went to my last counselling session in such a mess that the counsellor booked me for a few more sessions. The counsellor experienced first hand what I had been describing and agreed that my mood swings seems chemically induced.
I kept a log of all my side effects and the mood I was in depending on the brand of tamoxifen used, the tamoxifen dosage and the time of the day I was taking it (I tried 3 different brands, cut the pills in half and spread the intake between morning and evening, then evening only hoping the side effects will be unnoticed during my sleep). That was very useful information to show to my oncologist to discuss the mental side effects I was experiencing.
By August 2014, I was still struggling and decided to stop taking tamoxifen for our 2 weeks holiday. Once again, I felt better immediately and was able to enjoy being with my family.
In September 2014, I had a review with my oncologist and we agreed that my mood swings were chemically induced and I should try to take some antidepressants to rebalance the mental side effects induced by tamoxifen. Initially, I started on 75mg venlafaxine and still 5mg of tamoxifen daily. Within a month, the side effects of the venlafaxine had settled down and I was confortably living with 5mg of tamoxifen. My GP then suggested to increase the tamoxifen to 10mg; it was fine for a few weeks but soon I started struggling again and my GP doubled the amount of venlafaxine (150mg). Once again, it seems to do the trick and it was suggested to increase the tamoxifen to 15mg. Therefore I increased the dosage, without telling my husband, and after 10 days he asked me if I had changed something as he felt I was on the edge again... My GP suggested to increase venlafaxine again to 225mg but I refused - even if I was "coping" with life on the mixture "tamoxifen + venlafaxine", I was not really happy and increasing venlafaxine even more scared me (and my husband).
At that point, the oncologist suggested to try a different anti-depressant called citalopram and I switch from one to the other over a 4 weeks period. The switch was not nice but not as bad as it had been described to me. Unfortunately, citalopram did not work for me; it completely removed all my feelings and I was just a robot doing daily actions without positive or negative moods. So, I swapped back to venlafaxine and felt more settled.
In the mean time, my periods were steadily back (within 1 year of last chemo) and my oncolgist saw it as an alarm bell! As I was struggling with tamoxifen, it was suggested to replace it with monthly Zoladex injections and Letrazole. My husband and I were so happy when we left the hospital - NO MORE tamoxifen. However, I was going to stay on a low level of venlafaxine as I was very likely to still experience some side effects.
By February 2015 (after 11 months of struggling with tamoxifen), I started my new hormonal regimen: monthly Zoladex injections + daily Letrazole + daily 75mg of venlafaxine. For me, this new treatment is like the difference between day and night; I feel so much better and even the children said they have their mum back! But don't get me wrong, I hate the Zoladex injections; it feels like being stabbed and I cried with pain after the first one. Apparently, the slimmer you are, the more painful the injection is. Now, I take some ibuprofen before and after the injections and it is manageable.
When looking back at my 11 months on tamoxifen, I do question the point in being alive with such an horrible quality of life. I am very pleased by the support received from my oncology team and my GP; they did not give up on me and we finally found an hormonal treatment that is adequate (periods stopped straight away after the first Zoladex injection and I feel generally happy with life).
I wanted to write my story on this site as I would have loved to read a similar story when I was struggling. Too many people assume that if you are feeling down, it is because you are down and having trouble dealing with your cancer! Also, I did not want to increase my chances of the cancer coming back by stopping tamoxifen, I had reached the point where quality of life had to be more important!
