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tamoxifen - nolvadex d

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Re: tamoxifen - nolvadex d

Hi Lyn

I did find that I felt Soltamox was hot but I haven't had the burning in my throat. It might be worth mentioning to your GP.

I do sympathise with you about worrying about the side effect of Tamoxifen - it's not a particularly nice drug. I hope you find similarly to me that Soltamox isn't too bad - it has certainly been heaps better for me than tamoxifen in pill form.

I thought about coming off it (before Soltamox) but the fear of the cancer returning was greater than my fear of and problems with side effects. Just a thought - it's how I have managed to get through it.

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Re: tamoxifen - nolvadex d

Hi Bridget. I've just read your post with great interest, as I have been prescribed Soltamox as I can't swallow tablets. When I took my first dose, I found that it was incredibly hot, and the burning in my throat lasted nearly all night. Did you experience that? I found your post very reassuring, as I've been worrying myself sick about the side effects of Tamoxifen, and I've been plucking up courage to take it.

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Re: tamoxifen - nolvadex d

I switched from cheap brand of Tamoxifen (horrible side effects) to Nolvadex - although the nausea etc lessened my stomach swelled up like a balloon. I permanently looked 7 months pregnant. It was particularly bad in the evenings to the extent that I couldn't even go out as I literally douldn't do any trousers up!

I switched to Soltamox about 6 months ago and feel better than I have done the entire time I have been on tamoxifen. It took a while for the old stuff to work it'sway out of my system. Soltamox contains very few ingredients other than tamoxifen itself - just flavourings and a bit of alcohol. I think I must have been reacting to the other ingredients.

Can highly recommend trying it.

Bridget

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Re: tamoxifen - nolvadex d

Hi Maddy

I started taking it at night but was getting terrible sweats and having really strange dreams so bc nurse suggested morning. Also I found it really hard to remember to take it at night whereas I am a long time user of vitamin pills which I would always take in the morning so it was easier to remember. I now use a pill box and find this great. I have, however, forgotten to take it twice.

Love
Debbie

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Re: tamoxifen - nolvadex d

Hi ladies -

my cousin recommended taking Tamoxifen at night - her philosophy is that she may sleep through the sick feeling - I began taking it (just before bed) on October 22nd and so far have only had 'tropical moments' during the night - no sickness at all - but then everyone is different.

Good Luck
Maddyxxxxxx

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Re: tamoxifen - nolvadex d

Sorry June, I meant to say. I often feel a bit sick too. Sometimes I feel nauseous eating my evening meal which is at least 8 hours after I have taken pill. I never am sick though and it passes. I need to lose weight anyway so being a bit off my food isn't a bad thing...Lol

Love
Debbie

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Re: tamoxifen - nolvadex d

Hi June

I think they call Tamoxifen generic and there are, so far as I have seen, at least 3 different companies supplying it to chemists in my area, Hartlepool. I think I would be ok on any particular brand if it was the same brand each time but the chemists cannot specify which brands they get except Nolvadex d which they often have to order in especially. If you are given this, the chemists are not allowed to sustitute it for generic brand. I have tried cp, aps and another one, I can't remember name. I have had different side effects to each or maybe just my body getting used to it. Doctors are reluctant to prescribe Nolvadex as it is £3 dearer than tamoxifen for 30 tablets. If I could be guaranteed, for example, cp tamoxifen each time I got a scrip, I would be happy but I do think that this constant changing with brands is causing problems. My situation isn't helped by the fact that I am on anti depressants for the terrible weepies that the tamoxifen is giving me and I can't get the same batch of that each time either.

Love
Debbie

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Re: tamoxifen - nolvadex d

Hi,Debbie
Are c.p Pharmaceuticals Tamoxifen and Generic Tamoxifen 2 different makes.
Ive been on the c p one for over 1week now and the only side effect up to now.is
feeling a bit sick in the mornings, which i can cope with

best wishes junex

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Re: tamoxifen - nolvadex d

Hi Madeline

I don't know. When I first started on it I was terribly weepy but then again I had just had surgery and was still in shock. BC nurse said it was the Tamoxifen. I have had recurring bouts of sweats, aching joints, cramp, generally feeling unwell etc. Early this year my periods went to 8 weeks apart and I had awful pain to the point that my stomach looked like I was 9 months pregnant. I couldn't urinate properly and even walking was difficult. This went on for 6 months then suddenly stopped and my periods went back to 6 weeks apart. Reading the Tam leaflet later ( I think it was aps brand ) painful periods were listed as a side effect but then also on the citalopram I take for depression. One week I will feel like I have turned a corner then the next I would feel lethargic and ill. I can't say whether any of this is caused by generic Tamoxifen but, now that I am on Nolvadex, at least I will be getting the same brand every month. I do think, if my experience is typical, that it takes a year for your body to adjust.
Hope that helps
Love Debbie

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Re: tamoxifen - nolvadex d

Hi Debbie

Do I take it that you find different brands of Tamoxifen have different side effects?

Love Madeline

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Re: tamoxifen - nolvadex d

Hi Madeline. They prescribed me Tamoxifen originally 30 tabs worth and at £6.85 a go I asked for a bigger prescription so they said I could have 2 months worth at a time. I have been on it for a year but have asked each time I have seen a doctor, about twice, if I could change to Nolvadex. They refused and my consultant refused even though the bc nurse was sitting there saying that some women find it better. I found the consultant (not my original one ) to be incredibly patronising telling me "I musn't foget I have a life threatening illness" as if I could! I had about 2 months of repeats left before I had to see a doctor for a renewal. Don't know why that is as I am on it for 5 years. As I never get to see the same doctor twice and you can't pre book apps at my surgery just take pot luck, as a final resort I decided to write all over the repeat scrip how ill I felt and could I PLEASE have nolvadex d. I was flabbergasted to get it. So I can now have 60 days worth on on one scrip and I don't have to see a doctor to beg for it again for 22 months. It does seem unbelieveable but the scrip is signed by one of the practice partners and no doubt he knows that I am getting 6 monthly check ups at the hosptal too. I am just pleased I didn't give in. Haven't taken it yet as this current batch of tamoxifen (cp pharmaceuticals) hasn't been as bad as the others. If I was able to get the same brand each time I wouldn't even have considered Nolvadex d but the chemist can't order specific brands for you.
Debbie
xxxx

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Re: tamoxifen - nolvadex d

Hi Thrifty

I am rather interested that you got a prescription for 11 months, if it had 60 on each one does that mean you had 22 months worth. I think I need your Dr. It can be quite a costly business. i think it is so wrong we have to pay as we have cancer.

Madeline

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Re: tamoxifen - nolvadex d

I needed a repeat scrip for tamoxifen and decided to request nolvadex. I wrote that I was having side effects and wanted to try it. Then I simply posted it in the doctors pescription box and collected it two days later. I nearly fainted from shock when I saw I had a repeat scrip for 11 months of Nolvadex D 60 days worth on each one. This is after a year of begging from various doctors and consultants. My husband had to order it from Boots for me and I am going to take it as soon as my current pills run out so I will let you know how I get on. What's interesting is they have still left ordinary tamoxifen on the scrip too so if I have any problems I can go back to that.

Love
Debbie

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Re: tamoxifen - nolvadex d

Thanks everyone for this information, I have had 3 so far! Not grown a beard yet and still have my head of hair but I am monitoring things! I am interested to know that Tamoxifen has more ingredients so they cant be exactly the same. Anyway I am going to give Tamoxifen a proper go and if I am not happy shall speak to Onc and Dr and hopefully change. I agree whilst this site is very helpful, it is easy to scare yourself.

Madeline x

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Re: tamoxifen - nolvadex d

Hi
I saw my new oncologist last week, mentioned that I had changed my brand of tamoxifen to nolvadex d and she said that she had changed several of her patients too, and although there was no logic to it, their symptoms had improved in the main!!
claire

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Re: tamoxifen - nolvadex d

Maisy,

When I looked at the 'ingredients' for want of a better word, for the Tamoxifen I was taking, and the ingredients for Nolvadex, there are far more items listed in the 'ordinary' Tamoxifen than in the Nolvadex.

What the items are....is beyond me, but there are far more than in Nolvadex D.

Linda

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Re: tamoxifen - nolvadex d

You're so right Julie, everyone is different and it's no use thinking this might happen or that might happen......

My neighbour was absolutely fine on Tamoxifen, no problems at all. I've been feeling quite poorly so I've changed to Nolvadex D and already I can feel a difference.
I don't feel sick, my stomach has settled and I just feel so much better.

Some people have problems, some don't.

Linda

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Re: tamoxifen - nolvadex d

This site is brilliant, as it makes you feel you are not on your own, but it can scare you to death too, if you aren't careful! I was worried about going on Tamoxifen, having read the posts and although it is early days yet, I have been fine so far. Everyone is different and I think we will have to take things as they come, rather than worrying about what might happen. That is something I learnt very early on with this disease. It does not pay to think too far ahead of what might happen in the future, but to take it stage as it comes. Otherwise you will drive yourself mad.

At one stage I started to read the posts about secondaries and recurrence and I realised that I was just depressing myself. That isn't to imply any disrespect to those who are in that position, but I find it easier to deal with what I know, rather than what might happen.
Julie.

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Re: tamoxifen - nolvadex d

Will do. Good luck with your rads.
Caz xx

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Re: tamoxifen - nolvadex d

Thanks Caz, I will do the same as well. Perhaps you would be kind enough to let me know what he/she says.

Madeline x

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Re: tamoxifen - nolvadex d

Hi Maisey, I too had a WLE some lymph nodes removed and all clear. Radiotherapy begins Nov. Given Tamoxifen have taken it for just over a week, no side effects yet but early days. I wonder if it would be worth checking with a pharmacist as they deal with the drugs daily. I'm going to ask my Oncologist when I go in Nov.
Caz xx

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Re: tamoxifen - nolvadex d

Hi Everyone

I have recently had WLE and some lymph nodes removed. All has come back clear. I am now to have radiotherapy and have been given Tamoxifen. I have read with interest from this forum the side effects of Tamoxifen and frankly it has made me scared! So I have just asked my Doctor if I could have Nolvadex instead and he is more than happy to prescribe this but he says it is exactly the same stuff just a different name. He actually looked it up and showed me. So can anyone enlighten me on this - are we getting something wrong? There is something else I could have but the Oncologist would have to prescribe as it would all depend on my personal condition. I would be very grateful if I could have others vies.

Madeline x

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Re: tamoxifen - nolvadex d

Got it....well, getting it as soon as I can get to the chemist.

No quarms no expense issue, nothing really, only she was a locom....so fingers crossed I can get the same prescription every three months.

I will write the name clear and strong when I ask for my repeat. Here's hoping I can start to feel better soon.

Linda x

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Re: tamoxifen - nolvadex d

I have had most of the Tamoxifen side effects but, a year on, they do seem to be settling down. I bruise easily and they tested my bloods. My platelet count was 220 and they said 140 to 440 is normal so I am ok. I begged my gp for Nolvadex and he won't give me it. My bc nurse said it might help but the consultant won't prescribe it either. My cons wrote to the gp to recommend an anti depressant to stop hot flushes and gp won't give me it. She said doctors were no longer allowed to prescribe it. I am so fed up being shunted from one to the other....also I had to beg for two months supply, they initially had me on one and I pay for all my scrips.........I see my consultant again in Nov and I am going to tell him that if he doesn't write to my doc and tell them that I have to have Nolvadex, that I am coming off Tamoxifen. I won't of course but a threat might work...then my next step is a letter of complaint to the primary care trust. I don't see why I should be denied a drug costing £3 more than the generic one when all the folk on methadone treatments in hartlepool are getting free golf lessons to help them cope!!!!

Debbie
xxx

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Re: tamoxifen - nolvadex d

When I collected my 1st Arimidex prescription from the hospital pharmacy, they told me to make sure I told my doctor that repeat prescriptions from him had to be the genuine Arimidex and not any generic ones, as it did differ depending on what manufacturer made it.

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Re: tamoxifen - nolvadex d

After reading about the different brands prior to starting whilst on rads I decided to ask my gp for Nolvadex straight off. I had the 4 weeks script from the onc for generic and she gave me a note to give to Gp to prescribe regularly. I admit that I chose which GP I went to see about this with care as I knew the main GPs would reject it out of hand but I was prepared to fight. This Gp only works 1-2 days a week and had never heard of the brand. I explained I was having loads of problems with the generic (not strictly true) and had done research and wanted to try this brand. She looked it up in her little book and said fine. Because it is down as the only one at my GPs I can be sure to get it each time (although none of the chemists here seem to stock it and always have to order it in). Also she put me down for 3 months at a time which I gather is quite good as I have heard of some GPs only doing it monthly.

My advice - go in armed and ready and pick your target carefully - the more senior GPs tend to have more of an eye on the purse strings than others!

By the way had a few sweats with it but they died down after about 3 months and after 8 months on it feel fine - just the weight problem now!

Izz

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Re: tamoxifen - nolvadex d

Right, I've made an appointment to see my GP tomorrow morning. I am going to beg and plead; if nessecary to get Nolvadex.

Wish me luck.

Jane, I've not had bruising on my legs, or anywhere else for that matter, but I seem to have a little downy facial hair, which because my hair is dark to start with, is a bit of a problem, so I'm out with the bleach nearly each month.

Personally, I wouldn't give up on the Tamoxifen, but I would have a word with your GP about the things that are upsetting you.
None of asked for BC, so we need all that is available to help us through the treatment.

Take care
Linda xx

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Re: tamoxifen - nolvadex d

Hello

I have been on Tamoxifen for 4 weeks and it is a nightmare, including white downy facial hair. I told my doctor I would try it for another 2 months, is it worth it?
I am also getting brusing on my legs which I have never had before, the onc didnt think it was a problem, but it looks awful. Any one else had this problem.

Jane

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Re: tamoxifen - nolvadex d

Hi
I'm new to the forum and I'm finding it both helpful & scary at the same time.
I started on Tamoxifen a week ago, so far so good but I feel like a ticking time bomb waiting for everything to fall apart.
I've received wonderful treatment from all the staff in every dept, they have explained everything in detail. Hence I've not looked at anything to do with breast cancer (maybe a case of burying my head) until yesterday when I had a jittery moment and found this site.
I'm due to start radiotherapy at the beginning of Nov and will see my oncologist then, If I'm experiencing any of the side effects by then I will ask about the Nolvadex.
Thanks for the tip.
xx

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Re: tamoxifen - nolvadex d

Hi
I went to my doc asked her to change my tamoxifen to nolvadex d, she was horrified, thats a decision for your oncologist, she said. I explained that it was the same thing and that I had read on here, and talked to people who had had great improvement in quality of life, she changed it, on the proviso that I go back and duscuss any effects. She wasn't going to leave me on the more expensive one if she didn't have to.
The tiredness started to clear up within 3 days, it was as if I had been hibernating and spring had arrived, try it, they can't deny you that.
Seems mad to me, they will give you anti nausea drugs to stop that, antidepressents to stop sweats but switching to the more 'expensive ' tamoxifen would mean they wouldn't need to cascade prescribe.
good luck!
cx

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Re: tamoxifen - nolvadex d

I changed to nolvadex D earlier this year, I had had 3 lots of prescriptions all different brands, the first 2 were fine, started with some sweats but they died off and were nothing compared to the chemo sweats, but the third brand were a night mare, mainly dryness down below and fluid retention, so I popped into Boots and spoke with the pharmicist to request never having that brand again. I was told to get GP to note on prescriptions Nolvadex D or I would get a different brand each time and usually all chemists in the same town will have the same delivery. Personally I have never spoke with my GP, I am on repeat prescription every 2 months so I made the receptionist note it down and all prescription have been for novadex D. It is slightly more expensive (but a lot cheaper than arimadex) and GP's are not supposed to be seen favouring a certain brand.

I still have the tamoxifen belly and hips, I do seem to have that shape that you usually hit at 50 (not good on a 39 year old) and am really struggling to try and loose weight (a good 10lbs weight gain) but other than that seems to be OK and I have been on it for a year now.

If you are struggling then its worth a try, although I did start mine while still on herceptin so never really knew exactly what was causing what.

Debbie

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Re: tamoxifen - nolvadex d

Hi Claire,

I'm having terrible problems on Tamoxifen, (I've been taking it for 4 months), in-so-much-as generally feeling ill, sickly, headaches, stomach upset and so tired, I could sleep - during the day - for England....but to date (fingers cross) no real problems with sweats. Could I just ask, did you just ask your GP for Nolvadex, or did you have to ask your specialist?

Thanks
Linda

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Re: tamoxifen - nolvadex d

Hi Techy,
Thanks for the tip. I'm meant to be starting Tamoxifen this week - just have to go and collect it from the surgery. Have ordered my chillow (for the night sweats) so guess I can't put it off any longer.
cheers
caroline

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Re: tamoxifen - nolvadex d

Hi claire
thanks alot for that tip , i shall be starting on Tamoxifen in the next few days,
shall see how i get on with them
Thanks again
june

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tamoxifen - nolvadex d

Hi
I know that this has been covered on here, but I am just bringing it to the top for anyone on tamoxifen!
I was on generic, cheapy brand tamoxifen for 5 months, night sweats, hair thinning, tiredness, nausea in the mornings, aching hip joints etc etc........ I changed to nolvadex d, within 3 days my life was transformed, I sleep through the night with no sweats, I have so much more energy, no nausea, no hair thinning, I had to persuade my doctor who assured me that were all the same chemically! I know from my experience and those on here before me, it makes a huge difference, persuade your doctor to let you try it, It's made such a huge difference to me that I want to make sure everyone gets it if they want it.
Claire