Benefits of Tamoxifen after 2 years

Hi Ladies,

I know a lot of us have suffered terrible side effects on the tamoxifen and I just wanted to share with you what my oncologist told me.

I came off tamoxifen for 3 months due to severe side effects but am going back on it in a few weeks. I was advised by my oncologist that the benefits of taking tamoixfen from 2 yrs to 5 yrs was very minimal…so if you can handle being on it for 2 years you have almost the same benefits as if you stayed on it for 5 yrs. I was also told this at the Breast cancer care residential so raised it with the oncologist and he confirmed it was correct.

Just a thought, which may make it easier to cope with the side effects if you know it’s just for two years!!

Keep smiling girls

Love Foxy xx

HI Foxy
thanks for your post, I am suffering awful side effects due to tamox, you say you had severe side effects, do you mind telling me what they were?
How long after stopping them did the side effects go? and did you feel better off them?.
Sorry about all the questions but im at my wits end with this drug, been on it for 10 months now.
take care
Libby x

bumping this, hoping to get some answers

I started Tamoxifen in December 2007 (CP brand) and after about 4 months the side effects were bad - aching joints and nausea. I was switched to Nolvadex D (now discontinued) in the hope that things would improve, but they only did very slightly.

Last April I was switched to Arimidex and oh boy did the side effects worsen! I gave it 3 months, but after that I went to my GP (who in turn referred me back to the ONC) and I went back on Tamoxifen. Bliss!
(Wockhardt brand)

If I were to stay on it for the full 5 years, that would take me to December 2012. I understand that a clinical trial will have its results in the summer of that year, and it will be interesting to see whether it has been found that 5+ years is beneficial.

To be honest, if Tamoxifen is going to prevent secondaries in the future, then I would take it for the rest of my life.

HI
I know what you mean about taking them if it stops secondaries, however it’s hard living every day with such severe se, I also have chronic fatique to contend with, which ive had for 20 years. I hardley go out anymore, I am feeling so depressed.
Libby x

I think quite a lot of other things have to come into consideration here - stage, grade and percentage of ER+ and PR+. I was also told that tamoxifen does most of its work in the first two years. I had a stage 3 cancer which was 100% ER+ and PR+ so I wouldn’t consider coming off it. I was also told that out of chemo, rads and tamoxifen, it would probably be the tamoxifen that would protect me the best with regards secondaries. However, if I were say Stage 1 with no lymph node involvement or only slightly ER+ and PR+ (say 10%, 20% or 30%) then I may have had different thoughts. Incidentally, I take Novadex D and have lots of hot flushes and weight gain but I consider myself fairly lucky with regards SE.

Libby - can you not get help with your severe se?

Best of luck.

Jeannie

HI Jeannie,
my doctor is going to talk to my oncologist and see what he says, she said she did not want to take me off of them and put me at risk as my bc is very strong er+ 100 %
Libby x

Hi Libby

Please do call our helpline for further support and information, our specialist nurses and trained helpliners are there to support you and offer a listening ear. The line is open weekdays 9-5 and Sat 9-2.

Take care
Lucy

Hi,
I realise that I’m very fortunate that I don’t suffer greatly with Tamoxifen SE and just wanted to share my experience.

When I was diagnosed in 2002, (see profile)I was originally told that I would be on it for 5 years but my Onc now recommends staying on it for 10 years.
I’ve been on it since November 2002 and remain NED x

Hi Libby

I don’t mind you asking me at all.

My side effects were depression and really severe joint pains that caused me to hardly be able to walk some days. I have spoken to the oncologist and my GP but there are no long term pain killers they can give me help with the pain as long term they can damage the stomach. My tumour was a grade 3 and had spread to my lymph nodes so I have not taken the decision to come off them lightly!!! I am going back on them to give them one more try as my periods have come back and that may help with the SE. This is a very personal decision for everyone to take as everyones cancer and bodies are different. But all I can say is that I come under the Royal Marsden which is the top cancer hospital in the world so if my oncologist says that I can come off it after two years I would listen to him more than one that worked at a small town hospital. That may sound snobbish but I trust him and his reputation as the country’s leading oncologist with my life. Living with SE is different for everyone as we all have different pain levels and lifestyles. Please don’t be pressured into doing something you don’t want to do because of posts written on here as we are all so different. Follow your gut feeling and if you want to have a break from the tamoxifen for a few months to see how you feel…then go for it hon! All I can say is that when I came off tamoxifen my SE went within a couple off weeks.

I always believe that life is for living and it’s not how long you have but how you live it. Tamoxifen is an amazing drug but it’s how you feel when you are on it that counts.

I hope that helps Libby. Some peoples veiws are very black and white but I believe there are also shades of grey.

Take care and do speak to the helpline on here as they are fantastic and have always given me excellent advice.

Take care

Foxy xx

Hi Foxy
Thank you for words of wisdom - I have just come on the site to see if anybody has been for second opinions about their treatment as I am going to the Royal Marsden next week for one.
I have been on Tamoxifen for 3 years apart from 6 weeks when I was put on Arimidex and I had a massive reaction - my new oncologist at small town hospital would like me to try with Arimidex again - I am exceedingly nervous as I am still living with the consequences of last time.
I agree with your comments of life is for living and its not how long but how you live it - but wouldn’t it be awful if you lost out on a few years because you stopped taking a drug that could keep this disease at bay and I think that this is the problem many of us have especially with all the conflicting advice we receive.

Hi Tamsin

I totally understand what you are saying about the risk of losing a few years. That is why I have decided to give it one more go… I am hoping that the SE won’t be as bad next time and if they are and I have to come off it, at least I will know that I gave it my best shot.

If you don’t mind me asking, who have you been referred to at the Marsden?

I feel very lucky that I am under the Royal Marsden and have the best possible team looking after me. It is so good that you have been given the chance to get a 2nd opinion… lets hope they sort you out and you leave the appointment with all the answers you require.

Foxy xx

Hi Foxy

I am seeing a Dr Johnston up in London. On previous threads his name has been mentioned and my GP and I both researched into who would be the best person to go and see about my particular problem.

I have not yet found anybody who has had the same reaction, and I just want to talk to somebody who hopefully has more specialised knowledge on Tamoxifen and Arimidex. My local oncology department have been excellent with their care, but I am afraid in the aftermath of my reaction it was Dermatology and my Surgeon who have been the most supportive. Whether this is because communication between the departments in the hospital had broken down - or they thought ‘its only a rash’ or even the Secretary in oncology decided it was not a priority - but I have decided I needed to talk to somebody else and my GP has been brilliant with supporting me and helping to find a second opinion.

Well done having another go with Tamoxifen, I found myself very depressed going back on Tamoxifen last April/May, but I can say that I feel fine now - give yourself a good three months and look after yourself.

Tamsin

HI Foxy
thanks for taking the trouble to reply, I have decided to wait and see my oncologist, just don’t feel right at the mo.
I will carry on with the tamox for the time being and ss what happens.
thanks again take care
Libby xxx

Hi ladies

just seen that one lady said that nolvadex-d is being withdraw…when i phone for repeat prescription on friday last week and the reception said that they have withdrawn them i was gutted …does any one know why they have …so now i have to try another tamox…the thing is the nolvadex i was taking was not to bad side effect minamal …yea got joint pain felt sick now and then and hair is thinning… but i was coping …now i’m thimking the different one’s they will put me on will make my sideaffects bad ??? any feed back ??

Hello mallysally. I’m another one who has had to return to generics after Nolvadex.

I think it is quite a common thing when a drug has been off patent for a while. The genrics are more widely used and the company making the branded drug don’t make enough profit for them to think it worthwhile continuing with it.

I have just started my second month on generics. I had APS last time and Wockhart this. My intent is to compare them and aim to get the one with fewer SEs. So far both have more than Nolvadex - which I found an easy drug to take,

Eliza xx

Hiya,
I’ve had to change to generic Tamoxifen too. I’ve been on Wockhart for a few weeks and it’s not too bad - I’ve just got sore achey muscles,as though I’ve run a marathon, but no sickness/nausea so that’s bearable. I think I tried APS before, and that was the one that gave me terrible hot flushes in the night.
Would be interested to hear how others are doing on different brands
Jacquie

Hi Jacquie,

When I started the APS I had quite bad headaches & nausea (which I had when I was on generics before Nolvadex) plus some fluid retention and an increase in the night sweats. The headaches & nausea declined a bit but didn’t go away completely, which was why I am now trying the Wockhart. The headaches & nausea and the fluid retention have got bad again but it is very early days on the Wockhart. I am going to give it another couple of weeks and will keep you posted.

Eliza xx

Hi Ladies - can anyone identify any physical changes they have noticed when taking Tamoxafen? Am really concerned that I’ll lose my ‘feminity’ once all the oestrogen has been stemmed.Yes i know i’m being vain and i should have other priorities but…

Hi Ladies

Thanks for your feed back on tamox…

at least i can talk to pharmacey now and say i would like to try wockhart … i have one months left of nolv, not really looking forward to the switch but hey ho , got to keep taking them xxx