Straight after surgery last February I was given Zoladex injections and Letrozole. I found the side effects very severe. My relatively young body(despite chemo) became so stiff that I sometimes wondered if it was worth dragging it out of bed in the morning, it seemed like such hard work. Bearing in mind that until the previous September I had regularly exercised and had a very supple, and fit, body. I was told that this new ageing body was a result of the drop in oestrogen, and I would have to learn to live with it. Fortunately for me, my cancer had a low oestrogen responsiveness so the oncologist transferred me onto tamoxifen only.
Gradually the joint stiffness and pain eased up, but i still had extremely sore hips, which made sleeping on my side painful, and could no longer bend to pick up sticks for the dog.
Then I read an article suggesting that different brands of Tamoxifen had different side effects due to the bulking agents used. I immediately requested that my Doctor change brands for me, and I have never looked back. I am back at the gym, can reach my feet to put socks on, and feel twenty years younger.
I asked the chemist to see if he could isolate the differences in ingredients between brands, and it seems that both Letrozole and the CP brand of Tamoxifen i was on contain E464, whereas the APS and Nolvadex brands don’t. I would like to see all doctors, oncologists, breast care nurses change their beliefs that these side effects are inevitable, and start advising clients to try different brands. I also notice that this E464 is an agent that in the past has been used as a thickener for silicone breast implants, and one of the side effects of leaking silicone used to be joint pain. Not a coincidence then.
I really hope that Breastcancercare can take up this information and start to improve the lives of so many women who may not have realised this vital and simple but effective information.
Well what a coincidence! I was taking CP tamoxifen for a year and developed horrendous aches and pains after about 3 months (to the extent I could not hold my beloved tennis racquet, and that is saying something).
I have posted on another thread, but I will reiterate here that within 24 hours of changing from CP to Nolvadex D the aches and pains vanished.
I have no experience of tamoxifen but on reading this post, went to check my leaflet for letrozole (leaflet was recently changed, approved August 2008). No mention of “E464” but the tablets do contain hydroxypropyl methylcellulose, which is the chemical name of this additive. It is also known as hypromellose. It is used an emulsifier and thickening agent in many foods; as an alternative to animal gelatin; to reduce irritation in dry eyes; as well as in many medications.
A look on the internet does not suggest a safety concern - the problems with silicone breast implants could be caused by the silicone! - and I’m not rushing off to my onc or BCN demanding to be taken off letrozole (I have bone mets).
Interesting, I have changed to APS as I have fewer hot flushes than on CP Pharmaceuticals. But I was also aware that I wasn’t as stiff as I had been. Didn’t realise the connection. I work in an office and whenever I got up from my desk I felt I was hobbling across the office like an old lady for the first 10 yds or so, but it is much better now.
This is very interesting…. I am just about to start Tamoxifen. Because of all the threads here about the different brands, I asked my GP for Nolvadex D. He agreed to prescribe it, but warned me that in future, he might not be able to continue to do so because of financial constraints, and we would have to justify the extra cost.
So, if I am compelled to change to a generic later on, and suffer side effects, at least I will have a good argument for changing back! Thank you for posting the info, jmarsha.
Yes, very interesting as I have just started Tamoxifen and was issued with APS from the hospital pharmacy. I will have to get future supplies via my GP, of course, so having all this information is really useful, thanks. I don’t want to end up with the CP Pharmaceuticals one as so many people seem to have problems with it, but if the APS doesn’t give me much trouble I would be happy to stick with that rather than want the Nolvadex. Presumably the problem is that you can’t specify APS?
It will be interesting to see how we both get on with Tamoxifen, Lomalinda. Can anyone tell me how long it took for some of the side effects to start? I have also started taking Glucosamine in the hopes of minimising problems with joints and onc seemed to think this was worth trying.
I have an arrangement with my pharmacist that he gets me APS. Otherwise, you just get whatever the pharmacy has in stock that day - and they get whatever their supplier has in stock. My pharmacist has rung around his suppliers for me in the past to get APS. I always use my local chemist for all the family prescriptions, so I was known in there before all this started. I don’t know how you would get on if you went somewhere you weren’t known. Though I have heard that Boots own brand is also OK.
Thanks for interesting comments ladies. I was given some Tamoxifen yesterday at my last chemo session. I did ask for Nolvadex but onc seemed to think there was no differences in brands, also I think the pharmacy at the hospital only stocks one type. Am going to go and investigate the package now!
Hi,
just to add to our worries, I have been given 2 different types of nolvadex and only one contains the chemical mentioned. Guess what, I have been getting stiffer since changing to that one.So I will be asking the chemist to only get me the other one from now on
Lily
This is really interesting as I have been on Tamoxifen APS brand for one month and today I am to start the follow on tablets from the GP. Guess what, these are from CP pharmeuticals.
The main side effects I am having are the hot flashes that can come on at any time and intense sweating when I start any form of physical activity (this can include just getting ready to go out!)and I did get a bit of blurry vision on the day I started them.
Just looked at both information leaflets.
APS say the other ingredients are:- mannitol, povidone, sodium starch glycolate, colloidal silicon dioxide, magnesium stearate, hypromellose, polyethylene glycol and the colour, titanium dioxide (E171)
CP other ingredients are:- lactose, maize starch, pregelatinised maize starch, magnesium stearate, methylhydroxypropycellulose,propylene glycol, Opaspray white (E171 and E464)
I am hoping the side effects will die down a little as I continue with the tablets and my body adjusts, although will start the CP ones tonight and wait and see!
Wow was I glad to read this. I have been on Tamoxifen (CP chemicals)for 18months and have developed just the same symptoms as jmarsha7. My doctors had sent me for hip x rays and I have been visiting the Chiropractor but nothing has helped. I also have the hot flushes at night and the pains in my hips. I cannot walked up lots if stairs or hills. I feel like an old woman. O.K. I am 62 but I wasn;t like this before.
After reading this thread I have today been into the local Boots Phamacy which is open Sundays. I asked the Pharmacist whether I should see my GP or the Pharmacist who supplies my drugs as to changing brands? He told me that Pharmacists get paid a certain amount to dispense a certain drug and there is a profit margin. Therefore the higher the cost of the drug, the less he makes. I mentioned the Novoldex d and the APS brands not containing E364 and he said that would take a lot of investigating by the Pharmacist as comanies don’t like to say what their drugs contain. What a load of bull****. If you girls can find out which brand has E364 and which doesn’t why can’t they? He also said that they were not always able to get hold of certain brands but hey I have another 3 years or more on this and don’t want to suffer any more than I have to.
Question to your girls is do I see my GP first or tackle the Pharmacist?
Sorry, but this does not ring true at all, as Nolvadex DOES contain E464.
As explained in the comment by mrsblue, E464 is another name for Hydroxypropylmethylcellulose, which is also sometimes referred to as Hypromellose - and it IS contained in the Nolvadex tablets - both Nolvadex 20 and Nolvadex D (and listed on the leaflets enclosed with the tablets).
If Novaldex also contains E464 , where does that leave us to run? I beliave there are 2 kinds of Navaldex i.e. one is Novaldex-D does that also contain the E464.
This has really put me on a downer now, as I thought I may have found some releif from my side effects.
I’ve been taking tamoxifen for 3 weeks now but managed to get my doctor to prescribe nolvadex-d for following prescription after reading your comments. As mentioned by Lily above there are at least two types of nolvadex: nolvadex-d and nolvadex-20. I was given the nolvadex-20 by my local pharmacist but when I checked ingredients they looked like they were the dodgy ones, so I went back and insisted on them being changed to nolvadex-d - as per the prescription. They changed them no prob but I wonder if this is going to be an ongoing issue …
I have been taking tamoxifen since August, 08 and all i was aware of was that some months the side effects were worse than other months and it really came to a head when i felt that i had had a personality transplant after really becoming irritable and agitated and snappy etc…that is when i looked at this thread and thought that this is what may be happening to me as i had been getting my monthly prescriptions dispensed at different pharmacies and have been using brands that contain E464.
So armed with the information from this thread i went to my local Boots chemist and before i gave the pharmacist my prescription to dispense i asked him to check the ingredients list of the tamoxifen that he would be providng me with. It did contain E464 and i asked if the APS brand could be issued instead…he ordered it in for me…but did state ‘‘you cannot believe evertything that is written on the internet…’’ and i explained that i am on this medication for another four and a half years and if the change of brand helps in any way it will be a blessing…
So i changed the brand to APS and the difference in the space of three days was remarkable…no more joint pain, sleeping better at night and above all else my old personality is back…
I saw my oncologist two weeks ago and i expained the situation to him and he asked me to tell my breast care nurse so that she can spread this information on to others…
I would urge others to give the change of brand a go.
I’ve been taking Tamoxifen for 3 1/2 years now following surgery and radiotherapy for breast cancer. Apart from moderate hot flushes and some fatigue, I’ve generally done pretty well on it, and have found that keeping active and taking regular exercise helps a lot. However, about 3 or 4 months ago I started getting lower back pain - I’ve NEVER had any back pain, or indeed any other joint pain, in my life. It did ease off after about a month, but it’s intermittent, and a bit later on I started getting a sore, achy feeling in my hands and feet. Sometimes it’s bad when I first get out of bed in the mornings - my feet feel as if I’ve subjected them to a 20 mile walk! But once I get moving I’m fine, and a session at the gym loosens me up and makes me feel good. So I can’t really be a total wreck, can I!?
Reading some of the posts in this forum got me thinking, and the onset of my aches does seem to coincide with being given the Wockhardt brand of Tamoxifen instead of APS.
Tomorrow I’m going to talk with one of the doctors at the breast care centre where I’m a patient; the staff are brilliant there - they are always very supportive when you have a question or are concerned about something. I have to admit that these pains have got me rather worried - especially the lower back ones - because Tamoxifen can sometimes be the cause of gynecological cancers.
Anyway, when I speak to one of the doctors tomorrow I shall definitely ask about adverse reactions to different brands.
I would be interested to hear from anyone else with similar experiences, if you would like to leave me a comment.
Dear All,
I have some background in the chemical industry and I’d like to tell you not to get too hung up about the additives in the tamoxifen tablets. The way drugs work in the body is complex and tamoxifen manufactured in different factories can just be different in subtle ways that don’t show up in lab tests but do produce different side effects. We probably just need to try different brands and see which one suits us best.
well all this has made interesting reading. I thought my aching knees were due to gym work, which of course they may still be.
I have been taking Wockhardt(made by CP Pharmaceuticals) for afew weeks and before that a brand I can not remember. I have just spoken to the Pharmacist in Boots in Liskeard about your comments, she was extremely helpful. She said she has Tamoxifen made and sold by Tillomed in stock. I have just spoken to Tillomed who have confirmed they do not use E464 (also checked they didn’t use it under the other names too) in theirs. I have about three months supply left of the Wockhardt but the Pharmacist suggested I asked my GP for a one off prescription to subscribe Tillomed, so I could try it sooner rather than later. It will be interesting to find out if the aches are pill or gym related. I will report back in a month or two!