I have just started taking Nolvadex D and was hoping if any of you could give me any advise on what to expect?
I’m 41 years old and just finished my 6 cycles of FEC chemo and started my rads last friday. I requested Nolvadex D from my doctor as i’d heard somewhere it was the best one to take to avoid too many side effects. I started taking it last wednesday and have so far had no side effects but it has only been 5 days…when will I start to get them?
Any advice would be much appreciated. I understand that everybody reacts differently but would be nice to hear from anyone who is also taking the Nolvadex D brand of tamoxifen.
I’m hoping it doesn’t make me put on any weight as I put on 1.5 stone from the chemo, so have lost my confidence!
I was on Novadex D until recently as i had heard like you that it had less side effects. I also take zoladex so it is difficult to tell which side effect belongs to which drug. I suffered from hot sweats and vaginal dryness but the symptoms were never severe enough for me to consider stopping. I think it took about a month to six weeks for the symptoms to develop. I have now changed to femera due to a secondary dx.
Hi Foxy, I requested nolvadex but got told that here we get started on the generic one… saying that, am on C.P pharmaceuticals, have been for the last month and have really not had any side effects as yet apart from being a bit more restless half way through the night.
Am well prepared if anything kicks off to go back to docs and get nolvadex but as yet have been fine. I’m 44 and also just had my coil out so my poor body won’t really know what the hell is going on but holding up so far…good luck !
I have a prescription for generic tamoxifen but a pharmacist who suggested and dispenses the Nolvadex. My first prescription (from the hospital pharmacy) was dispensed as generic (APS) and I found I was getting headaches, although that may have been tension rather than the tamoxifen.
The headaches have disappeared and although I do get flushes and sweats they are fairly mild. I got some joint pain when I started tamoxifen but someone suggested glucosamine was helpful so I started taking that and it has made a difference so I’ve kept on with it.
I am now in month 4, which some people find is when side effects kick in, but so far, so good.
Hi,
I went on Nolvadex at the start of Dec 08 after also reading up about terrible side effects. I am still ok, no hot flushes so far. However I am starting to get warmer and get a prickly feeling when I get warm. Told my GP I would sit in his room until he gave them to me so he did.
Good luck. I did not really notice them much at all. I am not on anything else
Lots of luck
Lily x
Would love to hear how your doing with tamoxifen? I am starting this in 2 weeks. It is the brand name nolvaden d as well. Maybe we can keep in touch threw the experience.
I’ve been on the Nolvadex D now for just over a month so it will be lovely to keep in touch with you to discuss how you get on with them when you start in a couple of weeks.
The main thing i’ve noticed with them is that my knee joints ache a bit but that may be all the excercise and i’m having difficulties losing weight on them. When I finished the chemo I lost 6.5 pounds but since i’ve been on these tablets, i’ve put 1.5 pounds back on! I walk 3 miles everyday and have a personal trainer and still no joy… I even went on the slimfast diet for a week and gained weight!! Were you told that you might put on weight with them?
So far so good on the hot flushes front… I get the feeling that i’m hot in the face sometimes as if i’m blushing but that’s all…and I only get night flushes if i’ve had a few glasses of wine. So the SE are not too bad at all, I just wish i could lose the weight then i’d be happy.
Yes they told me that you may gain weight…aka retain fluid. I lost 8 lbs during chemo and do not want to gain any as well. How old are you and are you in menopause? Pre, peri or post? Chemo put me into menopause and my periods stopped after the 2nd treatment. Im 46 …soon to be 47.
If wine gives you hot flashes…does vodka as well…lol
My last cycle of chemo I got achy joints. Been living with them for last 3 months…and the hot flashes as well threwout entire chemo time 7 mts. I get most of the hot flashes at night. Looking forward to day these seize to exsist…lol Am I dreaming? Way to go losing weight. Gaining 1.5 could just be water retention. What are you doing for exercise?
I was on FEC chemo and put on 1.5 stones…so was gutted! I’m just 41 so pre menopause but I haven’t had a period since my 5 chemo but fingers crossed they come back.
I walk 3 miles to the hospital everyday and have a personal trainer twice a week and go to the gym to do cardio 3 times a week so the weight should be coming off. I eat very healthy and only let it slip when I go out for a meal once or twice a week.
The oncologist said mine could be water retention but gave me no drugs to help it but I read on here that someone suggested aquaban so i’m off to buy that today!
Speak soon
Foxy
My GP has just decided he will no longer prescribe me Nolvadex and is putting me on generic tamoxifen. I am so annoyed. Is thereany way I can get it elsewhere?
I’ve had various brands. CP pharmaceuticals made me have worse hot flushes and Generics made me have worse nighttime leg cramps. Now on APS which is giving me hideous period pains (just turned 40 had last period just after 1st chemo last June). I got a prescription yesterday for Nolvadex, so here’s hoping!
You could see if you can find a sympathetic pharmacist who will give you the Nolvadex on a generic prescription, at least as a starting point.
Did your GP give a reason? For some women it is being able to have Nolvadex that keeps them taking tamoxifen, so that might be an argument for continuing it.
Is there any way you can get the oncologist to send a letter to GP saying it must be Nolvadex ? When I was on tamoxifen, first doc would only do generic one (in his words I have budgets to think about) as that costs £6 a month compared to £8 a month for Nolvadex. Spoke to bcn and they got it specified. Might be worth a try.
I have to say, the Nolvadex was no better for me personally and I’m now on zoladex and arimidex (still a nightmare with SE !) but at least I won my ‘battle’ with the GP surgery !
I’m sorry to hear that your doctor will no longer give you Nolvadex. When I asked my doctor for Nolvadex she looked on her computer and said that’s not a problem as it is the same cost as all the other brands! And from where I was sat I could see the prices listed. I’d go back and say you have to have it or if that fails I would go and see another GP.
However, prior to that I had been on Tamoxifen for about 16 months.
For about 14 months I had been taking CP Pharmaceuticals brand, with horrible side effects in particular aches and pains in my joints. So I asked my GP if I could switch to Nolvadex D; he said that as long as he could justify it, then “yes”. And when I explained how miserable I was feeling with the aches and pains, that was his justification.
When I took my prescription in to the chemist, as a matter of interest I asked the difference in price. I was told that off the shelf Tamoxifen was about £3 a month, as opposed to about £13 a month for Nolvadex D.
When one witnesses the appalling overspending and waste elsewhere in this country (especially vis-a-vis the current expenses scandals we are hearing about), then I really do not think £120 per cancer patient per annum just to give them a better quality of life (which is what Nolvadex D gave me) is unacceptable.
