Has anybody taken a break from Hormone Therapy?

Hello! I have brought up this subject in other threads but would like to start one just for that. I have been on Tamoxifen for nearly two years, despite being post menopausal, because of the calcium depletion caused by Aromatase Inhibitors which is an issue in my case.
I have had nasty side effects that seem to come in waves, although the general trend is of decay: hair and eyelashes thinning and falling, tiredness, joint pain and lately putting on weight despite having kept the same one for decades and not having made any changes in my diet.
However, the side effect that has become unbearable is insomnia: I wake up at 4 or 4.30 am most mornings, can’t sleep during the day and as a consequence feel a wreck most of the time.
A BCC nurse suggested a break from T so I tried to get a consultation with an oncologist: after a lot of phone calls I got an appointment for February (which I’ll have to cancel since I am not going to be around at that particular date).
So I am left to my own devices and would greatly appreciate any feedback. I would love to hear from anybody who has ever taken a break, how long for and what happened when they started again. Also from anybody who has decided to drop HT altogether.
Many thanks in advance.

Hi Nikiya

Have you thought of having a word with your GP about this while you are waiting for your next appointment? I was having bad side effects with Tamoxifen a few years ago (mine was severe anxiety). I didn’t think at first to consult my GP because I thought my consultant and his team would deal with anything relating to my bc and also I know your own doctor might not be as experienced in bc and its treatments. I felt so ill and my next appointment with my consultant was a few months away so I went to my GP and he advised me to come off the Tamoxifen for about a month or so and if the symptoms subsided I would know if the Tamoxifen was causing it. He said it wouldn’t matter in the “scheme of things” to come off it for a short time. He also said I should let my bcn know what I was doing to keep her in the loop.

I came off the Tamoxifen and felt a lot better. When I got to see my consultant again and told him what had happened he told me the side effects weren’t worth it for the benefit I was getting. Other people’s situations will be different from mine, of course.

Hope you are feeling better soon.

Maude xx

Hello Nikiya

I am further along than you, had 5 years of tamoxifen and didn’t have any of the problems that you have experiencing with Tamoxifen apart from the weight gain. I was diagnosed with primary BC 8 years ago.

I am now on letrozole, have been for over 2 years and having major problems with mouth which started 6 months after starting Letrozole, dry mouth, ulcers, constant thrush and have just been diagnosed with Burning Mouth Syndrome which apparently 1 in 3 post menopausal women suffer from(not heard of that one). Been put on nortriptyline which is similiar to amitriptyline that I had just weaned myself off thinking that was causing the dry mouth. I really don’t know if I am going down the right path. Since coming off Tamoxifen I have lost the 2 stone and more and wonder if the weight loss is due to Letrozole.

Anyway I have fast forwarded a bit because in April at my check up with my Onc I told him again about my mouth(he was not interested the first time) and he agreed that I could have a 6-8 week break from Letrozol which I did but both me and my GP said it was not long enough to see any difference although I was able to stop sucking ice cubes.

My Onc has now said that I will be on Letrozole for 5 years and I don’t know if this is necessary. he said 3 years at first now its 5, I am now asking myself is it really necessary. I am now thinking of changing Oncs as I do have to travel quite a distance and he is not based at my local hospital(I have PMI, which I pay for myself after giving up work and my Employer previously paid)

It seems that there are many ladies who cannot tolerate HT and stop taking it and whilst its really good news that there are these drugs I have found with my Onc he is either not really aware or isn’t interested in side effects of these drugs.

I just thought that as time went on I would be feeling a bit like my old self but this isn’t the case.

I hope that you get other posts because I would be interested to hear other opinions

Hazel

Hi Nikiya

I’ve had 2 breaks from hormone therapy. One of 2 weeks and the other of 2 months both from tamox. During the longer bread I felt much better.

I’m now on Exemestane which hasn’t been SE free but my GP has sorted out my problems to a large degree and the SE’s are negligable now.

He’s recently precribed Citalopram for me. Apparently low hormone levels can cause a drop in serotonin which can in itself cause problems. Citalopram kick starts your body into producing serotonin. I do feel much better for taking them.

Maybe you should make an appointment with your GP to discuss how you feel and your SE’s.

Hope you get it sorted.

Jan

Exactly…do the benefits outweigh the side effects…someone tell me please coz I’m about to stop taking tamoxifen as I hate the bl##dy stuff!

Hi all

this study only looks at tamoxifen but might encourage those taking it to continue:

journals.lww.com/oncotimesuk/Fulltext/2011/04000/Five_years_on_tamoxifen_increases_breast_cancer.13.aspx

Nikiya - are you sure that’s the tamoxifen and not the menopause that’s causing those symptoms?

I’ve been having lots of problems since starting on hormone therapy but I’m not sure how much is hormonal fluctuations and how much is the tamoxifen. I was put into menopuase with the chemo (I’m 47) but started ovulating again 18 months later - my hormone levels are all over the place.

Nikiya and Lostinfrance - I definitely wouldn’t just stop taking tamoxifen without talking it through with a doctor. You could try your GP because s/he might be able to get your appointment with the Onc pushed forward. There might be options for things to help with the side effects too.

take care, Elinda x

LIF,
I had the same symptoms as you with Tamoxifen and as well I was the moody grandmother from hell! After two and a half months one morning I awoke with the vision in one eye gone from the middle up – like a black curtain. It lasted for 5 minutes. Apparently it was classed as a mini stroke!
After all sorts of tests which could find nothing wrong with eyes, heart or arteries my surgeon switched me to Arimidex. (I was only on Tam for perhaps 10 weeks).

For 12 months arimidex was manageable as long as I took glucosamine & chondroitin to control the joint pain and stiffness. I was found to have some osteoporosis so I take adcal and strontium for that. I certainly found it more liveable with than the tamoxifen side effects.

However, recently I had about 3 bouts of a hot itchy rash in the middle of my boobs seemingly triggered by insect bites or nettle rash on my wrist. The last bout wouldn’t go away so the GP prescribed antihistamine tablets, but was sceptical that arimidex could have caused it so long after having been taking it.- it is on the list as a side effect.

She sort of suggested I stop arimidex for a while. The antihistamine just about cleared the rash in a week but it hasn’t really gone away, just the itching and hotness has. So yesterday I stopped arimidex , and when the rash is completely gone I’ll start it again to see if it returns.

If it does I don’t know what I’ll do. The arimidex has raised my cholesterol by .9 in a year when I have given up dairy and after the ‘mini’ stroke I am supposed to lower it or take statins. I suffer from just about to erupt thrush and almost but not quite a bladder infection all the time and I don’t eat added sugar in anything and this used to be the culprit for these symptoms.

quote from above article…" those women who took tamoxifen for five years, there was disease recurrence in 40% – compared to 46% among those who took it for two years."

Flippin #### I want to know what the disease reccurance rate was in those who didn’t take it at all! And also a quite small percentage difference here is to me acceptable when my quality of life is so affected!
If for example those who had not taken it at all had a 50% risk…I culd live with that!

Also these stats are very old based on women between 1987 and 1997…

I thought there were better ie less recurrance rates now due to other treatments such as herceptin?

Anyone please who can tell me the % comparisom between those who don’t take it and those who do?

xx

This has been my experience but I do feel everyone thinking of taking such a break needs to discuss it with their onc, although Feb for an appointment Nikiya is just ridiculous.

I was originally on tamoxifen but because of the side effects, they swopped me to zoladex and arimidex 3 years ago. The side effects weren’t really any easier but I stuck with them as I am 8/8 positive for both ER and PR. I also have bone secondaries which I have had from initial diagnosis in 2007. After a year on the new combo, I was at the end of my tether and asked about having a break for a couple of months but my onc advised against it because my cancer was/is so strongly hormone receptive and that even missing one month could be very risky for me having further spread. Instead I was prescribed fluoxetine (prozac) in the smallest dose which has helped a little bit. I decided this was the lesser of two evils!!

Liz

Dear girls,
I am so grateful for all your comments and suggestions I had wanted to address individually each of your concerns and comments. However, I am too short of time and wanted to at least acknowledge and thank you rather than keep postponing for when I had time for a longer message.
I see I am not the only one trying to weigh Tamoxifen’s “theoretical” benefits against its daily unwanted realities. The truth is, there are some studies that show it improves survival by a certain percentage (I believe it to be 30%). Whether it is helping in your case or NOT nobody can tell, but most doctors will stick to the “golden rule”. We are, indeed, between a rock and a hard place.
I found some interesting info here:
lifeabc.org/risk_recurrence_more.html
But it does say more research is needed in women with “low risk” cancers" (which unfortunately does not mean you are not going to get it again). The SE I am experiencing are NOT menopause: I am too old for that and I never had hot flushes, for instance. But menopause is losing your hormone production and so does Tamoxifen or Aromatase Inhibitors, so it might boild down to the same thing. I cannot take the latter because I am at risk of osteoporosis. Besides, their SE are even worst.
I have not decided to stop yet, but will do in a few days since I am undergoing another reconstruction (to correct the poor one I was given here).
Let’s keep discussing this please! Love and hope!

Morning Nikiya

Has anyone said you can take a calcium supplement to protect your bones from osteoporosis if you take an aromatase inhibitor.

I ask because a friend, we were both diagnosed with BC at the same time, already had osteoporosis and she is on Arimidex but takes a calcium supplement for her bones.

I apologise if you have already investigated this but just thought I’d mention it.

Love Jan x

Think long and hard. Is any risk reduction not better than none ??

When I was diagnosed, I was seemingly not that oestrogen or progesterone positive ( and her2 testing was not done in 2000).

I stayed on tamoxifen for 6 and a half years. I hated it, it made me depressed, mentally sluggish and I put on a lot of weight.

I had to come off it as is not recommended for that long. I tried an AI and had even worse side effects. I came off them after 3 months.

In less than a year my bc returned with secondaries in my lung and spine. I also found out that my original tumour was very strongly her2 positive ( so should have come back sooner). Tamoxifen alone kept things at bay.

For me tamoxifen was a wonder drug. The horrible side effects are nothing compared to the thought of dying,not seeing your child grow up and not being able to plan for the future.

Harsh, yes probably, but so is this disease. Even 2 years on Tamoxifen is thought to have a protective long term benefit. What is 2 years compared to the rest of your life?

Julie x

I am sorry to hear what happened to you Juliet. I hope your cancer is under control and wish you luck with your treatment with all my heart.
However, how can you be sure Tamoxifen was keeping recurrence at bay? You say it “came back” less than one year after stopping. But that is when it was discovered… it might have been there for longer than that. Unfortunately, cancer is difficult to diagnose. I was arguing with the medical establishment for ONE year until I got a diagnosis, and I know for certain there are many similar cases.
When you say “I was seemingly not that oestrogen or progesterone positive”… do you mean you had little receptivity?
Thanks for your comments.

I meant not strongly receptive, sorry. It is 11 years ago now so I am sorry for not remembering exactly. I think they were 4 or 5 out of 8.

I do understand what you are saying. However I did have regular scans and tests before and throughout the 8 years. Ct and Mri at least yearly.( I also had a non essential double mastectomy as a precaution, with neo adjuvant chemo). I know that mico metastases may have been present for years… However, that is precisely what I am saying to you.

You just never know.

I get the impression (confirmed by my Onc) that whatever the statistics say, they are based on the results for LOTS of women, & can’t predict exactly what will happen to YOU as an individual.There are so many variables in giving a prognosis (Grade, Stage, Lymph Node involvement, Vascular involvement, ER & HER2 status etc) that I don’t think there can be any one % difference in survival rate for whether or not you have hormone therapy.
In my own case I was told that my WLE & Rads gave me a 90% of having no further recurrence, & that would be improved by a further 2%-3% if I had hormone therapy. The SE’s made me decide NOT to have it - a gamble, I know, but my choice.

Jennifer

I was diagnosed with bone mets at the same time as my primary in July 2007. Had the works then tamoxifen which I had for 7 months before the SEs were too much and my onc and surgeon swopped me to arimidex with zoladex injections as I am not menopausal in spite of the chemo etc. The SEs from this combo are just as bad and after a year I asked about having a couple of months break just to try to go back to the normal me - I was at the end of my tether. My onc said whilst I could do that, she thought it would be a huge mistake even to have a month’s break as my cancer is 8/8 positive for both ER and PR and the risks of spread would be very high. Instead I went on low dose prozac and that has helped a bit with the SEs.

3 years on, I am still on the same drugs and in spite of a small amount of spread in my spine that was sorted quickly, I am basically stable. I know everyone is different but I’m with Juliet66 on this one - probably because we are both living with an incurable condition.

Personally (Nikiya) I would press for an earlier appt with your onc and discuss options available. My thinking is I’d rather have the tablets than the spread and subsequent chemo etc.

Liz

Broadly speaking in the absence of adjuvant hormonal therapy 50% of node positive and around 32% of node negative breast cancer recur in the first 10 years post dx. You can look at gaeainitiative.eu for further information, the site is detailed and contains information about recurrence risk (only look if you want to know these sort of statistics and risk classification). We all have to make the decision whether to be compliant with treatment, but for me the benefits of tamoxifen are proven and I will be continuing for the duration even though I am only moderately ER pos. Good luck.

Hi, this is my first post here. I finished chemo last December, mastectomy in Feb and rads finished end of April. I’ve been taking tamoxifen since Feb. I’ve had varied se’s, flushes, nausea and general dottiness (lose track of my convo part way through, can be very embarrassing) and knee & hip pain, although some of this started with the Taxotere. Still i have to say i will take all they throw at me to kepp this at bay. On the whole I’m upbeat about it all (not convinced it’s actually sunk in yet)but I do have days where I wake gripped with a fear I have never before experienced. I wouldn’t consider stopping the tamoxifen and I can’t say I expected to walk away from this without damage, we have afterall been poisoned. I’m grateful to be here and want to be for a long time so will just put up with all the se’s.

Hello! Tina: I had a look at the link you provided. It takes you to the home page. After browsing a bit, I found the statistics deal mostly with awareness of the benefits of HT, communications between doctors and patients. etc. etc.
All very relevant, but I did not find the figures you mention and in any case, it would be interesting to compare them with the same rates in women undergoing/having undergone HT.
Could you possibly publish the link to those statistics?
I also noticed one of the sponsors of that organization is the pharmaceutical giant “Novartis”. Personally, I am a bit weary of big business giving unbiased advice.
I also wanted to thank everybody for their input. On Sunday I had time to address all comments but… alas!! I could not access the site. This is not the first time it happens and although it MIGHT have been my computer, I must say I was not having problems with any other sites. This is not the first time it happens and I wonder if anybody has experienced the same problems, in which case we might send a message to the webmaster, although I do not know how…
Best to all of you

Hello Nikiya

I will pass your comments onto the technical team to see if there were any problems with our site on Sunday.

many thanks
June, moderator