Different makes of Letrozole

Thanks Gay and jealous you saw a rainbow lol !! 

I had a meeting today with Macmillan regarding information or lack of it at appointments and suggested a frequently asked questions and answers booklet /sheet ....also aware of the different makes of tamoxifen /letrozole etc ...we can't all be wrong ....everyone needs to go to the yellow card site and lodge their effects online ...I'm sure the labs in the Far East and African countries don't give a toss what the fillers are !!! I work on the principal if it was the oncologists wife/husband /family and includes GP they'd all be researching their butts off for the best drugs for their loved ones !!! I've told Macmillan this all needs pulling together and they should lead and be out there for us !! Right off me soap box now lol 

Hugs and Rainbows ..hope you're doing well Gay

Debs xxx

Hi Debs,

Thanks for what you have done in following this up with Macmillan. I also feel very strongly about this and Macmillan is uniquely-placed to try and pull something together on it. I too wanted to raise the issue – but didn’t really know how to go about it.

I also did some research online about the different brands/fillers etc. All our collective experience can't be 'imagination'.

Round about 2000, when I was prescribed Tamoxifen, I was able to avoid any serious side-effects when I discovered the original Novartis brand and got my GP to prescribe it. I know a lot of women who have not been so lucky.

This year, newly-diagnosed with BC again, they put me on letrozole and I experienced a lot of bone pain etc. It proved almost impossible to even get a consistent (generic) brand, as I found one that seemed OK ish for me. Tried different chemists - but this only worked up to a point - and was a lot of work. 

I wonder how this impacts some of the chemo and other drugs supplied to us directly from the hospitals in our treatment?

You can also read a lot about the enormous profits many of the manufacturers are making from patients’ unnecessary suffering.

It’s so helpful to share experience online and the best way to avoid/deal with SEs. But also important to fight for the versions of the drugs which avoid so many people suffering those SEs in the first place.

Keep going with this!

Sylvia

Hi LindyLou, he should be reported! If your GP states a brand, the pharmacy must give you that brand. I have several allergies to what are considered generic fillers and sometimes these are in a specific make, so my GP always states a brand and the pharmacy, just ASDA, has it on file that this should not be changed without making me aware. This alone highlights that different makes can have different side effects! Your GP obviously knows this and anyone with a pharmacological degree should too, so next time he spouts off, I would ask him where he went to University and what he achieved. That'll shut him up!

Hi Sylvia

Thank you for the information it's great and I hope you're not suffering with too many side effects . Can you give me the links for research and also company profits ..either on here or please pm them to me ...I'm going to try and get the press involved in next few weeks 

Hugs and Rainbows

Debs xxx

Lol, GP not GO, I can't figure out if you can edit posts and I make so many mistakes! :-)

JoDec said:

Lol, GP not GO, I can't figure out if you can edit posts and I make so many mistakes! :-)

Yay, no more uneditable errors! Thanks L.

Dear Linda, cancer does not choose to come to only people with pharmacutal degrees (I cant even spell it so no chance) but anyone with a degree of common sense knows we recognise when our body may react differently with different brands of drugs, and no chemist will tell me different. 

I had the same problem except I reacted so badly and as luck would have it I had an appointment with my oncologist who explained to me yes Femara is Femera but the generic called Letrozole contains Femera BUT different brands of Letrozole have different compound and people react differently.  So if your oncologist has prescribed Actavis that is the the drug the chemist has to order in, and no other brand will do for you. 

I had to change chemists because I was treated in the same way, I felt the same way as you and I was slowly ballooning not a pretty sight!!!!

We have gone through enough so please ask your village chemist not to be such a "xxx" choose your own words show you some respect and order for you whats on the prescription because oncologist did not write on the prescription "oh just get her whatever you can" 

Boots get exactly whats on mine 

I hope this puts a little smile on your face and good luck.

What an awful experience.  Shame on the pharmacy.  I have had similar issues, especially with Boots who refuse to order a specific brand.  I have found one local chemist who will specifically order me in Accord as it is a brand that definitely suits me, whereas some of the others really did bring on side effects.  It's worth asking round.  I know you can ask your GP to specify a brand on your repeat prescription too.

Like others have said, I do worry that we are shipping in prescription medication from overseas just because it's cheaper - never mind the quality control issues.

I know this issue has been raised before, here, so you may be able to look it up?

All the best

xx

Hi all

I have been on letrozole for nearly a month and apart from having peripheral neuropathy I have started with extremely bad joint pains which myself and gp thought were chemo side effects reading all your posts am beginning to wonder if some of them are due to the letrozole I will be checking the makes for a few months and see if there is any difference xx