Were you on nolvadex-d?

Hello,
I am almost down to my last box of nolvadex and so will be forced to change to something else. I am really disappointed as I have faired really well on them and I am concerned that I may now get hot flushes. I am due to switch to femara in December but was wondering whether it would be better to ask if I could switch earlier rather than change to generic tamoxifen in May and then femara in Dec. My menopausal status is ok for this. I just wondered if anyone would let me know how they got on switching from nolvadex to femara or from nolvadex to generic brands so if he says no, I know which brand to go for next.
Thanks and … to astra for not carrying on making tablets that make life so much easier for us! No ethical policy going on at all.
Lily x

Hi Lily,
I stopped Nolvadex in February and went straight on to Femara. The first few weeks were absolutely brilliant - I presume as the effects of tamoxifen wore off. I had always felt that my side effects were not too bad, but in fact I had completely underestimated the impact the drug had been having on me - I felt the most well I have been since diagnosis nearly 2 years ago. Those heady days have passed as the Femara has kicked in, but I find the side effects for me really are very mild. I have the stiff joints, but only really in my hands, and the stiffness wears off very quickly. I also have some hot flushes, but these seem to be settling and becoming fewer now.

Good luck on whichever path you follow!
Jx

Hi Lily

I stopped taking Nolvadex D in October and went onto Femara. Very quickly I started having really bad migraines most days. I’ve had migraine since my teens. I stopped taking Femara and had three weeks ‘rest’ without taking anything at all. Like Geewizz I too didn’t realise the impact of the drug, I felt so well and had so much energy.

My pharmacist managed to get 10 packs of Nolvadex D for me and so I’m back on that now. I have to change in October because the supply runs out then.

I had really bad hot flushes (well just one hot flush really which lasted all the time) on the generic Tamoxifen which is why I changed to Nolvadex D.

I do hope you find something which suits you.

The very best of luck with it all.

Jan x

I have gone onto generics, probably until next April when the plan is to move to one of the AIs.

I tried both the Wockhart and APS brands and have settled with the APS. Slightly more SEs than Nolvadex but nowhere near as bad as when I first started on the stuff so I think my body must have got used to it.

My pharmacist is good about keeping particular brands of drugs for particular customers.

Eliza xx

Hello again, and thank you Jan for reminding me about the migraines. It’s amazing how quickly we forget things isn’t it? I too had migraines when I started Femara, and was worried initially that I may not be able to tolerate the drug. However, they wore off in a matter of weeks, and have not been a problem since.

Jx

Hi Geewhiz

That’s interesting. I will have to change to something else in October and to know that the migraines wore off for you after a while makes me think I might just try it again. My BC did tell me that Femara was better tolerated than other AI’s.

I don’t know how severe your migraine is. Whatever level of severity it’s not something which is easy to cope with. My migraines just lay me out. I usually spend all the time lying on the bathroom floor. I’m sick every few minutes so it’s not worth leaving the bathroom. I take a half dose Verapamil every day for my migraine and Rizatriptan Melts when I feel an attack coming on. Neither of these worked when I was taking Femara. It seems to me that the AI’s seem to produce similar side effects. The onc did tell me about another drug which works in a different way which might be OK but I can’t remember the name of it. Maybe someone on here can help?

Jan x

Hello Jan,

My migraines are very mild in comparison to yours - in fact I only use the term because that is how the doctors describe them even though I have no vomiting and usually no headache, just the visual disturbances. I’ve checked back and I’m pretty sure this batch were due to Femara - they started 10 days after I switched from Nolvadex, and stopped 10 days later. I’d had 5 in that time, which again isn’t much I know, but seeing as in my “normal” life I would expect perhaps 1 a year, it was a marked change for me.

Best wishes,
Jx

Hi Geewhiz

I took Femara for 6 weeks and the migraines started after about a week. There were very few days when I didn’t wake up in the night with a migraine although with Rizatriptan I did manage to get rid of it during the following day. However Rizatriptan is a very strong drug which shouldn’t be taken every day. With the medication I take I would expect maybe 2 or 3 migraines a month.

There are different types of migraine, clearly we don’t have the same type. Whatever type it is we can do without it!!!

I’m going to leave thinking about the change to something else when my Nolvadex D runs out. I’ll consider it nearer the time. I seem to get very stressed when changes are afoot with my treatment so I’ll just enjoy the summer (warm and sunny hopefully) and push it all to the back of my mind for the time being.

Love and best wishes to you

Jan c

HI Lily

I’m glad you started this thread as I’m wondering what to go on after my stash of Nolvadex runs out. I have 9mths left, which will soon pass, so it’s good to know what else is out there.

Hope you’re well, and find something the right drug for you

Love
Kinden
x
PS Hope your digestive system is behaving too, mine is pretty good these days x

Hi,
thanks Jan and Geewhiz for letting me know how you got on. I used to have migraines in the past which have vanished so that is a problem I could potentially have to consider. Femara is the most expensive AI apparently so that might be why they are slow to change over. I am a little obsessed by the global research that Ais are more effective at preventing Bc from coming back.The one I read gave a greater than 3% advantage, which is quite a lot when you don’t start off in high %s.Don’t you just hate changing anything though, such a worry whether the side effects will be worse. Interestingly the research found that each of the 3 AIs came with its own set of side effects and that they did not react the same way for people.
Kinden hi how are things for you these days? I am just going back for my 2 year results next week after mammos, bone scan, Ct scan, tumour markers and about 16 other blood tests. My digestive system is different and I still have to be careful not to eat after about 8 or pay the price with acid and an unsettled night.Thank goodness I can eat fruit happily again but it has to be before early evening again. My bonus was the best hair and skin I have had for some time. My hair is double the thickness, curly and lots of grey disappeared too, which was quite unexpected but really cheering.
Will let you know how it all goes. I am wondering if I will even see my onc as he got stuck in US and so may be piled up with new/urgent people and send me to a junior as he has done before. They are terrified of him and won’t make any decisions.
Best wishes all and thank you for replying
Lily x

Hi Lily

I haven’t been on for a while as you can see. Why are you having so many tests at 2 yrs post dx? I was 2 yrs last Friday and apart from a mammo have no other test scheduled. Have you got any symptoms?

Have you seen your onc yet?

I’ve been having back pain, so had an xray, which has come back to show arthritis! Feeling tired but it is a bit stressful at work at the moment, so that’s not surprising.

Hope you got good results
Kinden
x

Hi Kinden,
thanks for asking and I am pleased to report that all the tests came back ok. The area where I live is a centre of excellence and we all get fussed a lot, me maybe a bit more as I am on a trial. We are all seen every 12 weeks and have tumour markers and full blood tests evry time we see the onc. I had no symptoms, went in saying I feel great and he said well lets have evrything checked through again. I did question why and he said he was not worried at all. I think we are just very lucky that he takes a very proactive approach as I had no node involvement and from what I have read would not have recieved much follow up in some areas.I already have 2 appointments booked for July, one with my surgeon and another back with my onc.
Sorry to hear about your back trouble, as I know it is so wearing when it continues. Will you just go right round until your 3rd year anniversary now without seeing anyone?
take care and hope other things are more settled for you now
Love
Lily x

Hi Lily,

I see you’re still a night bird! So glad your tests were all clear

I’ve got a mammo this month, then seeing onc in August and breast consultant in Feb.

My bcns are fab, I really can ring anytime if I’ve a problem, and they are not shy to invite me up quickly if something needs investigating. I like the sound of all the checks you get, though.

My digestive system is pretty good, however I can’t drink more than a glass of wine without getting a hangover!
Take care
love
Kinden
x