Tamoxifen

[Pippasandy]

Hello Everyone, I wonder if anyone can help, please, I have been on Tamoxifen for 5 months now and the side effects are awful. The fatigue is the worst thing and it comes as complete weakness to the point that I cannot function, or walk or anything but sit down.

Has anyone experienced this and have you any advice about dealing with it.

I cannot live like this,it is being alive but not living.

I would be grateful for any thoughts. Thanks.

PippaSandy

[Saintgermain]

Hello Pippasandy,

I am so sorry to hear about your struggles with Tamoxifen my OC is ER positive I was advised to take a aromatase inhibitor for 2 years but they made me feel pretty crappy I stopped taking them I already have arthritis its a hard call. You may want to talk to your Onc there's several different ones out there perhaps he could switch you or I've read that you can take a break from them. Vitamin D3 is very important have you had your levels checked? I chose to go a different route I saw a OB/Gyno alternative Doctor had a hormone l vitamin deficiency panel done I take Dim/13C with PDQ a chinese herb that they have done multiple studies on that blocks estrogen pathways a long with Green Tea Extract I also follow an anti-estrogen diet high in omega 3's are key. I'm not promoting my protocol as the be all end all the Gyno that I met with is an 18 year Breast cancer survivor as a surgeon she declined Tamoxofen and has written a couple books. Hugs from Chicago

[SarahBa in reply to Saintgermain]

Hello Saintgermain, I know we have 'spoken' in the past as we have a very similar diagnosis. Interesting to read that you take DIM/13C. I too take DIM however I have not heard of PDQ the Chinese herb that you refer to. When I put 'PDQ' into google I'm not finding anything. What is PDQ an abbreviation of so that I may read up on PDQ please? xx

[Saintgermain in reply to SarahBa]

Hi Sarah,

Yes we have both have similar diagnosis I spelled it wrong sorry it’s PQQ the brand that that my Gyno sells in her office is SeekingHealth Amazon sells it but I don’t see it with the PQQ PYRROLOQUNIOLINE QUINONE it’s only 4mg I’ll have to look it up hope this helps. Hope your doing well

[SarahBa in reply to Saintgermain]

Thank you, I'll take a look. Yes, I'm keeping well thank you. Had my second quarterly monitoring blood test and my CA125 was 8 which I was pleased about.

[Saintgermain in reply to SarahBa]

Same here CA125 hovering around 10 NED 1 year in October everyday is a blessing have probably eaten a truckload of broccoli and bags of organic walnuts ha! Was wondering do you ever have the occasional hot flush or night sweat? Once in awhile I experience that I take it as a plus estrogen must be low. XOXO

[SarahBa in reply to Saintgermain]

I'll ping you a quick message Saintgermain x

[OvacomeSupport Partner My Ovacome Team in reply to Saintgermain]

Hello SarahBa and Saintgermain

Thank you for your comments. This is just a reminder to let your team know any supplements you are taking so they are aware regarding any drug interactions or side effects. It's also important to make sure you buy any supplements from a reputable source. There is more information on the Association of UK Dietitians website here: bda.uk.com/resource/supplem...

I hope this is helpful.

Best wishes

Anna

Ovacome Support

[Saintgermain in reply to OvacomeSupport]

Hello,

Appreciate your concern my support team is abreast of my supplements that I am taking and in agreement with them.

[Lizchips]

I had ovarian cancer, I'm on nothing, I know they put people with breast cancer on it, but the first side effect can be ovarian cancer. I had my friend stop she had new tumors in ovarian area, luckily not cancer. I have been on nothing since 2014. Best wishes, Liz

[Saintgermain in reply to Lizchips]

Lizchips,

Read your post the Tamoxifen caused ovarian cancer? Ive never read that on nothing since 2014 a blessing may I ask what type of OC you had stage? grade? estrogen positive?

[OvacomeSupport Partner My Ovacome Team in reply to Lizchips]

Hello Lizchips

Thank you for your comment. We just wanted to clarify that there is evidence tamoxifen can increase the risk of ovarian cysts, not ovarian cancer. A rare side effect is endometrial (womb) cancer. There is more information on the following websites:

Macmillan Cancer support macmillan.org.uk/cancer-inf...

Cancer Research UK cancerresearchuk.org/about-...

Electronic medicines compendium medicines.org.uk/emc

I hope this is helpful, please do let us know if you need any further information.

Best wishes

Anna

Ovacome Support

[A1r1t]

Hi pippasandy, I have overian cancer and I've had chemo and debunking and avistan now I'm taking tamoxifen since April and at first I felt tired and stomach craps and sickly but they subsided and now everything feels OK and my cia number is slowly going down. Although it is still high its going in right direction. I'm sorry that it's not for you and it's not doable, hope you're team find you something better suited to you. 🤗 ♥ X

[Pippasandy in reply to A1r1t]

thanks for reply and really glad it is working for you. I think I will ask for a lower dose regards