Does Lactose-free Tamoxifen exist??

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Calsacienne
Calsacienne Member Posts: 14
edited December 2017 in Hormonal Therapy - Before, During, and After

Yes, I'm lactose intolerant. I started Tamox a week ago tomorrow. So far, so good but the old digestive track isn't happy a few hours later. 

I pulled out the leaflet in the package and read that it has lactose but not how much. I live in France and trotted down to my local pharmacy. The nice lady there looked up all the available brands and they ALL had lactose in them. 

If I could get the name of a brand, even in the U.S., that doesn't have lactose or at least reduced?? 

Surely, I can't be the only LI person on this??

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2014

    Calsacienne, I did a search here on the discussion boards and found a thread from Feb 2012 that discusses others' experience with this, and that changing brands seemed to help some members, although their issues were mostly with joint pains. Here's a link to the thread: 

    http://community.breastcancer.org/forum/78/topic/7...

    We hope you can find a solution!

    • The Mods

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  • JuanitaB
    JuanitaB Member Posts: 31
    edited March 2014

    Hi Calsacienne , I am in Canada and also lactose intolerant. I can't tell you what brand I used as I only stayed on tamoxifen for 6 weeks but it came in 10 mg pills and I think it might not have been commonly ordered as they didn't have any in stock at first.

    Is it possible to take a lactaid pill with your tamoxifen?

    I felt like you at the time. Surely we aren't the only one's to ever request lactose free tami Singing

    Good luck in your quest Smile

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  • odie16
    odie16 Member Posts: 1,882
    edited March 2014

    Unfortunately the only lactose free option here in the USA is no longer available as the manufacturer has stopped making it. I just take the lactaid med .....ugh

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited March 2014

    Hang in there; it may not be the small amount of lactose in the pills that is bothering you.  With the AIs and with the tamoxifen, I have experienced digestive issues, the most severe on the tamoxifen.  It has taken several weeks for things to settle down.  Your body may just be adjusting to the med itself.  

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  • Calsacienne
    Calsacienne Member Posts: 14
    edited March 2014

    Actually, I've been LI for 30 years, so I know the symptoms. I was at home this week a lot and kept going over what I had eaten... (I often get it after going to a restaurant and eating something with cream or butter) and it took me awhile to figure out the culprit! 

    That other thread was talking about joint pain but that's not my problem at all. It's just the lactose, which is an extra ingredient. 

    I wish they sold Lactaid pills here but honestly, the pills weren't too effective. Those drops were great and I was bummed when they stopped making those! 

    Remember that here in Europe, they don't have a lot of experience with LI. It usually shows up in people with African, Asian and Middle Eastern backgrounds. I'm really good at reading labels and live near Germany where they now have a lot of Lactose-free products, including fresh milk!

    I was hoping there was a solution in N.America. Good to know there was one brand once. Not much help but at least someone thought of it! 

    I'll ask my family to send me Lactaid pills from the U.S.

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited March 2014

    Calsacienne - Ugh.  I am sorry; I was hoping for an easy fix for you after a few weeks.  Good luck getting help from family here in the US.  Tamoxifen is a hard enough body transition with out adding indefinite lactose issues to the mix.  Hope you find relief soon!

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  • oceangirl654
    oceangirl654 Member Posts: 217
    edited April 2015

    The APO brand in Canada does not have lactose. I don't know how one can get it though! I am having severe dry mouth and I heard it can be from lactose. But I live in the US and all the brands here have lactose. I don't know what to do! Why do they put lactose in all the brands? Crazy! The non-generic brand used to have such simple safe ingredients like corn starch. Why can't they keep making it like that?

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  • windingshores
    windingshores Member Posts: 704
    edited April 2015

    The aromatase inhibitors also all have lactose, both brand name and generic. I am allergic to dairy and generally avoid lactose. In desperation after having symptoms on all generics, I asked for brand name Femara and am not having the same reactions (and we are talking about reactions, not side effects, just so others understand). The brand name has lactose listed but it is further down the list, and it has fewer fillers in general. For whatever reason, I can tolerate the brand name and am overjoyed.

    With tamoxifen, I wonder if it can be compounded since it has been around a long time. With my sensitivities I often use a compounding pharmacy.

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  • SueRobbo
    SueRobbo Member Posts: 11
    edited December 2017

    I’m sorry, it is so long since you posted. How are you getting on with Femara? I’m recently diagnosed IDC, Grade 3, E 100%, Pr negative, HER2 negative and await my treatment plan January 4th. I’m severely lactose intolerant and it doesn’t seem like I have many options (but to do whatever it takes).

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited December 2017
    I think the liquid Tamoxifen (Soltamox) is lactose free, but very expensive.
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