Tamoxifen and NO side effects....worry?

AnnNYC

Quote:

---

It seems like quite a few of us aren't having bad hotflashes with tamoxifen. But now I'm reading at different sites, that this could mean that we aren't metabalising the tamoxifen. I'm really considering paying for the 2D6 genes test on my own, to make sure it is getting into my system. My oncologist says my insurance company won't cover it, and he doesn't seem concerned. But $300 could by me piece of mind, hopefully. I don't want to waste another 1 1/2 years on it if it's not working. Anyone else thinking of doing this? Kate

---

Kate -- If you have the energy, contact your insurance company yourself to find out if they'll pay for the CYP-2D6 test. Mine (United Healthcare) paid for it in May 2007. Maybe your oncologist is basing "no-pay" info on past experience. Even 2 years ago it was considered "experimental" -- but I think now it is "standard of care."

Luckily for me, my oncologist tested me for the CYP-2D6 alleles at my first visit to her. I wouldn't have even known about it. And it turns out I'm in the 7% of Caucasians who have 2 "null" alleles and don't metabolize Tamoxifen at all. Luckily, I'm a year postmenopausal, so AI is okay for me.

She said at the time, "it's a new test -- but it's so important -- I can't believe the number of doctors who AREN'T using it."

Interesting sidetrack: the same liver enzyme pathway (CYP-2D6) is needed by some (not all) SSRIs -- in my family there's a strong history of depression AND a strong history of bad results while taking some SSRIs (a suicide, some manic reactions) -- IMHO, psychiatrists might consider ordering this genetic test when prescribing SSRIs.

kathysea

Wow, color me stupid but this is the first time I ever heard it was possible that Tamoxifen may not work for everyone. I am 46 and I've been on it for a year and 4 months, I've had a few warmies I call them not so much a hot flash, I've had no other side effects, I actually lost weight, have stronger nails and thicker hair which I attribute to my One a Day Womens Vitamin. I am upset that my onco never discussed this with me. Thank you so much for the info. Thank goodness for breastcancer.org!

Kathy
Stage 1, grade 2, 3.5cm, mastectomy, ER & PR positive

AnnNYC

Kathy -- there are apparently plenty of oncologists who haven't yet heard that tamoxifen may not work for everyone! The FDA added a package insert about this in late October 2006 -- sounds like you started taking it around April 2006.

There's more information on the genetic testing on this thread:
http://community.breastcancer.org/ubbthr...ge=0#Post677097

mjj1951

I just got done with radiation in june.I started tamoxifen right away. I couldn't handle the hot flashes, so I stopped taking it. It was like being in an all day shower, the hot flashe made me panic. Then the DR. put me on Evista, that did the same thing. I am not taking anything now. Has anybody else not taken anything?? I feel bad, but couldnt work while having hot flashes.
mjj

iodine

You and your onc can work with a lot of different meds to work on the flashes. Please talk with her/him about different med to help with them.

oceangirl654

My mom had no side effects except dry skin and she has had no recurrence. She took tamox for five years starting over 20 years ago!

Unbreakable01

I had a bit of insomnia in the beginning and was keeping on weight.  Now I'm able to sleep well, and have lost 5 lbs.  I had to start counting calories to get the weight off again.  My only thing is getting tired, but not sure if that's the meds or everything else.

In less than a year since my mastectomy I now have atypical cells growing where I had the mastectomy.  I'm wondering if I metabolize it well.  I'll ask my doctor to run the test, but he didn't even want to run bloodwork unless something was out of the ordinary.  But how would you know unless you ran bloodwork?

Artista928

If your onc isn't wanting to do blood tests, try your pcp.

Carlsoda

I was wondering, both my mom and my older sister did not have any menopause symptoms, no hot flashes!! I have always assumed I would never have them either. Should I worry since I have a family history of no or limited hot flashes? I will be finishing rads in early August and planning to start tamoxifen August 15th. I am not looking forward to it

Lisey

Ladies, if you are interested in testing yourselves, a company called Kailosgenetics.com does a full scan for only $149... I"m awaiting my metabolism results for all the different pathways, not just 2D6. I think knowing how you metabolize can help with a lot of dosing decisions, but the ONLY WAY to know if Tamox is getting through is with an Endoxifen blood test. Side effects (or lack thereof) can sometimes show a problem, but it's like bone pain... we don't know what it means until you actually take the test.

If my results come back and I"m a PM or IM, I'll try Tamox for a quarter, take the blood test and see my endoxifen levels. If they are too low to be theraputic, I'll probably do an OS and AI... we'll see.

Also, codeine uses the same pathway as tamox. and people who are rapid metabolizers of codeine can easily OD since it turns to morphine so quickly. Genetic testing should be done like newborn screening.. so we each know which pathways work for us and which ones are more problematic. I highly suggest testing yourselves, it cheap enough now that it's worth it to just know.

dtad

Sorry for being cynical but if MOs are not doing any kind of bloodwork or screening why exactly are we seeing them??

Annette47

Carlsoda - my mother tells me she doesn’t remember ever having hot flashes, but I have had them on Tamoxifen.

In general, I’ve found the side effects I’ve had tend to come and go. Hot flashes have only really been a problem in the hot summer months, and only during parts of my cycle (I am premenopausal). I’ve had some other issues too (all minor) such as leg cramps and they too come and go - I never have all the side effects at once, and much of the time don’t have any. My point is for anyone just starting on it, don’t assume that you will NEVER have side effects just because you don’t have them right away.

pupmom

dtad, don't know about you, but I have been seeing my my original (now retired) and current MOs to save my life. I'm now down to 2 visits a year, and although I don't have blood work or scans done anymore, I do get a thorough breast exam and the opportunity to ask questions, thereby getting valuable information about my various concerns. It has been particularly helpful to talk with him about SEs from medication, and the latest bc research. (I go to an NCI hospital.) Seeing a doctor one-on-one is much better than playing phone tag with nurses, imho.

Lisey

I agree Annette. Tamoxifen gets results by accumulation, so it will take a while - months, to achieve therapeutic levels even with normal metabolizers. As for testing, there are currently some Endoxifen trials going on right now, to see if moving away from Tamox into a full Endoxifen medicine is easier. From what I've read testing for Endoxifen is a hard test for the labs and not many do it. I'm willing to pay out of pocket to just verify for my own piece of mind how I'm doing on it, at least the first time. I'm just anxious to get my results back... waiting is the hard part.

Carlsoda

Annette...sucks I was hoping no hot flashes! time will only tell...once I start in August!

dtad

yourkiemom...so happy you are being so closely followed by your MO. Unfortunately that is not the case with many. You read time and time again on this forum how women have to turn to their PCP for any kind of screening or bloodwork. Im personally being followed by my BS although he also does not do any screening unless there are symptoms. In my case only a breast exam. I know we all have different experiences.

pupmom

dtad, I think it boils down to quality of care. When I was first diagnosed, what my team, at the time, proposed was alarming, even to a complete newbie. We got a second opinion with an NCI hospital staff surgeon/professor, and sure enough, my instincts were spot on. We should NEVER assume that every doctor is the same. Our lives are on the line!

Lisey

Still awaiting the results of my Kailos test... but for the first time my knee is aching.. I've only been on Tamoxifen for 5 days, so I'm not sure if it's even plausible that this is a SE... but I've never had joint pain before. I'm 41 and pretty healthy.