Members suggestions what helped them thru hormone therapy

Discussions relating to primary breast cancer and treatment. Also for those recently diagnosed, and for those concerned about possible symptoms of breast cancer.
Crystalady
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Re: Members suggestions what helped them thru hormone therap

Postby Crystalady » Fri Aug 05, 2011 9:45 am

Egel, I tried the soap, hmmm.. not sure on that one but the magnesium (I take a potassium + mag pill- it works better for me) and the Indian Tonic definitely helps. I drink the "diet" version.
First diagnosed in Dec 1998. Thyroid cancer 2006. Thought I was free and clear after 10 years but no, mets in spine in Dec 2008. Femara stopped working October 2010.Was on Aromasin and zometa. Now taking Xeloda and Zometa.Xeloda not working Dec 2011. Tamoxifen started. Feb 2012 Now on Abraxane.

Egel
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Re: Members suggestions what helped them thru hormone therap

Postby Egel » Fri Aug 05, 2011 8:40 am

I am on Fareston which is in the same class as Tamoxafin. The muscle cramps have been pretty bad but have been somewhat relieved by magnesium supplement and putting a cake of soap in the bed :pmsl: Weird but that does seem to help. Have just swapped the soap for camphor which is supposed to be better. The effects last during the day, no verdict on the camphor yet but you can buy it at the chemist, comes in a little plastic box with holes in the side, perfect for putting in the bed and very cheap. My oncologist suggested Schweppes tonic water or bitter lemon as they have some quinine in them which helps with muscle cramps. I tried it one night and it did help but it is not exactly a health drink and the sugar content is a bit off putting so I would rather stick with the camphor if possible. No cramps last night :happydance:

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Re: Members suggestions what helped them thru hormone therap

Postby erint » Thu Aug 04, 2011 11:04 pm

Deb, I suffered from horrendous joint pain in the early days on Tamoxifen, walking 15 mins per day on the treadmill left me hobbling for the rest of the day. I couldn't squat down, as I couldn't get back up again. These symptoms got worse on Arimidex, which I went off after 6 months due to the SE's. Back on Tamoxifen now. While on Arimidex though I found a reference on another website to a joint formula made by Schiff called Move Free. The woman who talked about it said it really helped her Arimidex related joint pain so I decided to try it. I did do some investigation to see if I could buy a similar formula in Australia, but the ones I found were lower doses and more expensive, so I buy the Move Free online from the US. It is a high strength combination of Glucosamine, chondroiten, MSN, and a couple of other things. It works really well for me. I am currently doing 45 mins on the treadmill with no pain. Even while I was on the Arimidex I could tell the difference - I was much less sore than I had been.
If you aren't keen to buy from overseas, look for a joint support formula with those 3 ingredients, and get one that has at least 1500mg MSN per dose. You can usually tell within about a week if it's helping (Move Free suggest a "loading phase" of two weeks at double the dose to build up levels in the body, then drop to regular dose) Most people notice a difference at around day 5
Worth a try if you're not keen on long term pain killers as a solution.
Erin

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Re: Members suggestions what helped them thru hormone therap

Postby JudyB » Sun Jul 17, 2011 7:32 pm

Hi Deb

I am lucky to have few side effects of Tamoxifen. I do feel stiff and old sometimes but not in a painful way if that makes sense. I'm fairly sure there have been others on here who had had the bone pain like you. Some people here seem to think that changing the brand may help, I think it is worth a try. I think I have heard of others who have gone off it then tried again later with better results. I hope you can find a solution.

Judy
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Members suggestions what helped them thru hormone therap

Postby debman » Sun Jul 17, 2011 7:01 pm

Has anyone else experienced horrific bone and joint pain on Tamoxifen? I have been taking it for about 2 months now and at first I thought it was residual bone pain from the docetaxel, but it is just not going away. I did some googling and found that it is now recognised as an SE of tamoxifen. If this keeps up for 5 years I don't know what I'll do as I'm as crippled as a 100 year old. I can only walk about 100 metres without terrible pain making me have to stop. I have had to get myself a mobility parking permit and have stooped to using shopping trolleys as a walker to save myself the embarrassment of looking so old and decrepit in shopping centres. Even then I have to sit down every 15mins or so.

Deb
, . Stopped taking tamoxifen in December 2012 after 18 months due to debilitating SEs.

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Re: Members suggestions what helped them thru hormone therap

Postby Deebee » Wed Mar 02, 2011 10:18 am

Thanks Michelle I might look into it before I get my next script filled.

Deb

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Re: Members suggestions what helped them thru hormone therap

Postby blue&white » Tue Mar 01, 2011 6:10 pm

Hi Deb
I think I have the original Tamoxifen (Nolvadex) - I get it from Nova Pharmacies in Cheltenham & Dingley. Maybe their other stores carry it too?

Michelle :happydance:
Last edited by blue&white on Sun Oct 02, 2011 10:42 pm, edited 1 time in total.

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Re: Members suggestions what helped them thru hormone therap

Postby BronNZ » Tue Mar 01, 2011 4:49 pm

I'm on Genox, and no problems apart from the hot flushes - mind you, I was having them right through chemo anyway.
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Re: Members suggestions what helped them thru hormone therap

Postby Deebee » Tue Mar 01, 2011 10:49 am

I was taking Genox but my pharmacy hasnt been able to get it for about 2 month when I had my last script filled. Now i'm not sure what I'm on, haven't noticed any difference yet but it has only been a week since I changed.

Deb

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Re: Members suggestions what helped them thru hormone therap

Postby JudyB » Mon Feb 28, 2011 9:27 pm

LOL Sue, you will be fine and wondering what all the fuss is about soon. I take the Genox and apart from the hot flushes which I was probably due for anyway and a bit more discharge I don't appear to have any of the other symptoms. I have been getting headaches lately and know that they can be a side effect of tamoxifen, I'm wondering if that's likely if I have been taking it for almost a year before the headaches started? I will ask my oncologist when I see her next.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: Members suggestions what helped them thru hormone therap

Postby LuvMyLab » Mon Feb 28, 2011 8:11 pm

Dang, I got Tamosin today! Took my first one and haven't grown another head yet.. fingers crossed I won't turn into an alien. :gappygrin:

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Re: Members suggestions what helped them thru hormone therap

Postby Janette » Mon Feb 28, 2011 5:35 pm

Tamoxifen was discovered by ICI Pharmaceuticals[2] (now AstraZeneca) and is sold under the trade names Nolvadex, Istubal, and Valodex. However, the drug, even before its patent expiration, was and still is widely referred to by its generic name "tamoxifen."

Nolvadex is the original, tamoxifen (citrate) is the ingredient. Genox and Tamosin are generics. A member had some problems with Genox.
Janette


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Re: Members suggestions what helped them thru hormone therap

Postby Deebee » Mon Feb 28, 2011 3:33 pm

Does anyone know where you can get the original Tamoxifen? I have asked at least 6 chemists and no-one seem to carry it and they are not interested in trying either.
Pharmacists all seem to think that generic's are the same as the original and if you have SE's its not because of fillers. They look at me as if I'm and idiot for questioning them :stupid:

Deb

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Re: Members suggestions what helped them thru hormone therap

Postby Janette » Wed Feb 23, 2011 4:40 pm

Mel,
I would definitely try a different brand of tamoxifen either another generic or the original. We've had others members suffer some bad side effects after the pharmacy has changed the brand. You can ask the Pharmacy to get a particular brand for you, mine does for another medication. :hugs:
Janette




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Re: Members suggestions what helped them thru hormone therap

Postby erint » Wed Feb 23, 2011 12:36 pm

Hi Mel, lots has been written on the forum about se's from generic Tamoxifen being worse than those from the real thing. Having said that the se's from Tamoxifen do include muscle cramps, nausea anaemia and skin changes, which could include bruising I guess. The leg pain might be a sign of a blood clot (another serious SE of Tamoxifen)
Could you be pregnant? Nausea and leg cramps are a sign of pregnancy, and stranger things have happened with the younger more fertile women who have finished their treatment.
Either way if these SE's are interfering with your day to day activities, you need to get to a doctor and get them checked. Once they have checked for anything of concern, and ruled out anything major, then you can start treating the symptoms.
Leg cramps respond well to magnesioum. Take a supplement, or eat a banana every day and see if that helps. If you're a bit anaemic (common after treatment) maybe an iron supplement or increase your iron rich foods by eating spinach, broccoli eggs etc.
Not real sure what you can do for the nausea, not something I usually suffer from, but you could try a probiotic, or an ABC yoghurt to increase your intestinal flora, something like glutamine to support the gut, ginger is good for nausea (often used for morning sickness) dry crackers to settle the stomach, making sure you don't go too long without food so you don't get that churning feeling in your stomach.
I highly recommend finding a good naturopath or nutrionist, it helped me a lot with my se's, but first you need to find out what exactly is causing the problem, so you can tailor your response to it.
Hope you are feeling better soon. :hugs:
Erin


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