Insomnia with new brand of Tamoxifen

[Traveller66]

I am feeling very sorry for myself at the moment as I am dealing with persistent insomnia on a new generic brand of Tamoxifen. I had been prescribed Nolvadex D and was taking it successfully more or less for 3 and a half years. Unfortunately Nolvadex is no longer being manufactured so I am now taking Teva Tamoxifen- a generic - I haven’t slept much or at all a few nights on this new med. I am actually thinking of quitting it altogether. It’s 5:27 am as I write this and I guess I hoped someone might have some advice? Going on a trip to UK next week and I dread being exhausted the whole time. I am taking the tamoxifen in the morning so I don’t think timing is an issue. I don’t really want to take sleeping pills as a long term solution? Any ideas would be very much appreciated.

[Happyrosie]

If you are post-menopausal then there are three other drugs commonly prescribed. Do you have a breast cancer nurse allocated to you? She would help. If not, your oncologist.

[Traveller66 in reply to Happyrosie]

I was put on Tamoxifen as it seemed the least likely to aggravate my arthritis- knees, hips and neck and fingers- I have had to deal with hair loss, hot flashes and just general estrogen deprivation but I was determined to stick it out for five years. From all I have heard the aromatase inhibitors which are the alternate anti cancer meds have even more pronounced side effects- my sister managed to take Arimidex for about a week and then gave up- I react very strongly to most meds and I am strongly thinking about giving up and taking the risk of stopping anti hormone meds early - I do appreciate your reply- I am in Canada so no breast cancer nurse to discuss this with.

[Happyrosie in reply to Traveller66]

oh i didn’t realise that your medical team didn’t provide a breast cancer nurse - that’s sad! We in the UK grumble about our health service but once you have breast cancer she is there for you for life.

Here, our waiting lists are long (my daughter is mentally ill and is on a six month waiting list just to be assessed, then will be on a w/l for treatment), the only way to get an appointment at our doctor is to wait outside at eight o’clock in the morning and when the doctors office opens we speak to a receptionist, who will then pass a message on to a doctor, who will ring back within 48 hours. Otherwise you phone at 8 o’clock to find the slots have all gone by the time the phone is answered forty minutes later. But enough of my whingeing.

The three aromatase inhibitors are slightly different and have different side effects - the MacMillan website describes it better than I can. A friend of mine is on one of them and has no side effects whatsoever. With me, I had joint and muscle pain and poor sleep patterns, and tried all three over the years.

I would strongly suggest you speak to your oncologist.

[mathematics in reply to Happyrosie]

Sorry I live in the UK and an allocated nurse is not there for you for life at all mine disappeared after surgery and was non supportive during chemo and radiotherapy.

[Happyrosie in reply to mathematics]

oh dear! I was told when I was diagnosed that the service was nationwide and lifelong! In your position - because I think we need the reassurance that the service should provide - you should contact your Patient Liaison Service and ask!

[mathematics in reply to Happyrosie]

Thanks for replying I have only just been discharged from the checkups and finished taking letrozole last year that was after 10 years however I have not been provided with a cancer nurse only at the beginning during surgery. I could have really needed one. Take care.

[Memories in reply to mathematics]

Hi I am also in the uk. I am over 4 years post op and still have the full support of my cancer nurses. As far as I'm aware this is an on going service that they will provide. I am sorry to hear you did not get or have the same support. x

[Sadiedog12 in reply to mathematics]

That was my experience here too. ( uk)

[mathematics in reply to Sadiedog12]

I live in Wales which might be a reason but if was told by my macmillan nurse after my ops that I would be looked after by the chemo and radiotherapy departments from then on. I was given a general number to ring by the departments but did not have a nurse.

[Sadiedog12 in reply to mathematics]

I live in North Yorkshire. My experience was very similar to yours in that after surgery unless I had a problem with anything surgery related then I was effectively discharged from their care. To be honest though, as it was at the beginning of the pandemic and throughout, so maybe that affected the care the I received. It’s now two years ago and I’ve never heard a peep from them. The oncology / chemo department were expected to over from them I think. X

[Happyrosie in reply to Sadiedog12]

you wouldn’t necessarily have heard from anyone - the breast cancer nurse (should you be fortunate enough to have one) is at the other end of the phone if you need her.

[Sadiedog12 in reply to Happyrosie]

I was appointed a nurse but she wasn’t readily available. As I mentioned, the pandemic made everything difficult but I was fortunate compared to others in that my treatment wasn’t delayed in any way.

[Syd1 in reply to Traveller66]

I was on armidex and examestatane but lost use of part of my hand from the joint pain. That has eased up since I’ve been on tamoxifen, but I think now my hair & eyelashes are falling out from the tamoxifen. There’s no good answer for me

[Nibi78]

Hi Traveller66, I have tried other brands, but all of them had terrible side effects. I am on Teva brand too and very happy with it, but I asked my oncologist to prescribe 10 mg and I am taking one in the morning and one in the evening to make it 20mg for the day. That way is much better and actually I can sleep now. Hope this helps.

[Traveller66 in reply to Nibi78]

hi- really appreciate the suggestion of dividing the dose in two- I am going to give Teva Tamoxifen another try- can’t access my old brand - Nolvadex D- but my doctor is going to try to get some from some other pharmacy which may have a stock pile !?

I stopped taking the any tamoxifen while I was on holiday and felt amazing not taking it but I know it’s a risk- so trying the half dose AM and PM to see if it works out better.

I am honestly considering giving up after 3 and a half years but am so anxious about a recurrence I guess I will keep trying to cope with it.

Thanks for yr advice

[weathervane]

Would your pharmacist be able to give you advice? Sometimes certain drugs can give you initial problems but once you get over that period it might settle down and the side effects lessen. I hope things improve for you and you don’t have to change drugs again , best wishes.

[galgo]

Hi isn't it a pain it's 4yrs for me and I took Wockhard tablets but they have stopped making them and now this Tamoxifen made me so ill I have stopped them for the time being I have found the factory in the UK who make them so had a reply from them with a telephone number for the chemist to ring for the suppliers could uou perhaps.do the same

[ba5083]

Curious when you are taking the meds? Many times increased blood flow from a change in medication even when it is a generic (due to different binders and fillers). Increased blood flow keeps your mind wide awake.

[Traveller66 in reply to ba5083]

taking it Am with breakfast

[ba5083 in reply to Traveller66]

That shouldn't be it then. Have you tried any mediation? Many people claim it makes a huge difference but it can take some practice to get "into the zone" as some say.

[Traveller66 in reply to ba5083]

good suggestion - have tried some yogic breathing and relaxation techniques but I struggle with meditation as my brain seems to be hyperactive