Tamoxifen side effects after treatment completed

[Traveller66]

Hi- I have been taking tamoxifen -Nolvadex brand for 3 months- despite my post menopausal status- age-66- my oncologist thought it would be best to use Tamoxifen not an aromatase inhibitor- different side effects which would cause joint pain and as I have arthritis- thought I would tolerate tamoxifen better-I have been dealing with hot flashes, and some strange tingling burning sensations but worst of all is the insomnia-anyway have had some relief with time released melatonin, magnesium supplements and valerian-trying to avoid prescription sleep meds - anyway my question is regarding post Tamoxifen treatment health risks- I have read research which implicates tamoxifen with neurological conditions such as Parkinson’s disease and Alzheimer’s- at 66 I worry about finishing my 5 years of treatment and finding myself facing a new and frightening diagnosis! Any thoughts?

[Bagrat]

I'm 75 and also on tamoxifen. From what I understand Parkinsons more common in men and reducing oestrogen may make it a more level playing field!

I was given the option to choose and liked the fact that it was bone strengthening if taken after menopause and didn't want to be any more creaky with my knees.

Don't like the fact I'll be 80 when I stop. I do feel generally "older" since my op (2nd lumpectomy 6 months ago. Don't know what to blame.....r/t or tamoxifen or just getting older!!

Statistics are great for doctors planning care but mean little for an individual

Good luck

[Traveller66 in reply to Bagrat]

Thanks for yr insights- I started Tamoxifen 3 months ago and aside from insomnia and hot flashes I seem to be coping with the Tamoxifen ok- the lack of sleep is a challenge but I keep trying some natural remedies to get some relief- only 5 hours a night unfortunately- I have had a partial knee replacement so doc was concerned about effects of aromatase inhibitors on my arthritis riddled body so thought Tamoxifen was the best choice- anyway all the best and thanks for your reply.

[Bagrat in reply to Traveller66]

I have taken magnesium for a couple of years as I have a heart condition paroxysmal atrial fibrillation. Its an electrical dysfunction not physical but think magnesium is helping. I sleep but wake frequently and use meditation, mindfulness and relaxation mp3s which all help. Mark Williams and Andrew Johnson both on you tube, 2 of my favourites though many people like Headspace app.

[Traveller66 in reply to Bagrat]

Must admit that I haven’t tried relaxation and mindfulness to help with my messed up nights- will give it a go- have done some checklist and journaling to see if there is a common denominator when I barely sleep at all- have done so much research on the side effects of Tamoxifen I think I have a deep seated fear of potentially uterine cancer and blood clots plus later on Parkinson’s and dementia - I started Tamoxifen at age 66 so I will be 71 when finished- doing a lot of travelling in my retirement so keep hoping to feel well enough to continue for a while longer

[anrean]

The hot flashes may not be related to Tamoxifen - I can't take anything and still have hot flashes that are horrid. They went away for awhile but came back worse. I am 61 and had breast ca in 2004 and 2009, along with ovarian in 2006. Lumpectomies and radical hysterectomy. Currently have lung ca that was treated with rads. Hope this helps you figure things out

[Traveller66 in reply to anrean]

It’s good to hear from someone close to my age- I’m 66 and sometimes I feel I should just be happy that I had a really early diagnosis and treatment and I am still alive and should just stop complaining- so many younger women are dealing with breast cancer/ I never realized how challenging it is to deal with life threatening illness- I am now a member of a club with so many soldiering on through recurring cancer- thanks for responding- I guess I have never spoken much with other cancer sufferers— I appreciate your reply! I feel less alone

[anrean in reply to Traveller66]

Thank you for the kind words - yes, too many younger people are getting it, but I suspect that has always been true, just not known. I have been in this since 2002, and one of the things that was most helpful was a support group. If you have one near you, I strongly urge that you seek out others like us. My support group was general cancer patients, and it was still very helpful to know others are going through many of the same things as us. There were people older and younger in the group - it was very, very helpful