Forum Discussion
Amazonian
7 years agoMember
Alternatives to Zoladex and Tamoxifan? & Genetic Testing for Drug Metabolism
Hi all,
Who has had Genetic Testing for Drug Metabolism?
I have and it has been spot on with understanding why over the years I have had sooo many side effects with different drugs.
At this stage the testing is not covering every medication, but it is improving it's data base the more people do the test.
It has been helpful when I have had my lumpectomy, my anesthetist tailor made my drug regime and I had no horrible side effects from the sedation or pain killers.
I was also able to see that Tamoxifen is a no go for me. I was interested to see why, so I rang the genetic testing company to see why it came up as Red when I typed it in on my report. They told me that I may or may not have side effects, but I will not metabolise the drug to make the effective ingredient for it to work.
I have told my onlocolgist this, and she is insisting I try it.
I had severe side effects with Zoladex, the physical, while crappy, I could put up with. But the mental side effects were debilitating; Severe Depression, Anger, Irrationality etc, hence we did not start the aromatse inhibitors.
My oncologist used a tool on the web (I think this has be spoken about in another post) and said that if I stopped taking the Zoladex that my 10 year survial rate would decrease by 2.7%. I was willing to take those odds, and we both agreed to stop the Zoladex.
But my last visit, she wants me to start the Tamoxifen, because, some women do not have any troubles with it. :/
Again I do not want to, because 1. my genetic test and the company say that studies show that my genetic make up will not metabolize the drug to make the effective ingreadient; and 2. I do not want to add to the horrid mental side effects that I am experiencing ( A little less now that I am not on Zoledex) but still life disruptive.
Because of my Genetic make up, I can't take nearly all of the antidpressents used to treat the side effects either.
Im about ready to find another oncologist that will listen.
What other alternatives to Tamoxifen are there? Other than Zoladex and Aromatase Inhibitors?
Is anyone out there not taking anything at all?
Thankyou for letting me rant,
xo
Heres a link to the genetic testing I had done if anyone is interested.
https://www.mydna.life/medication/
Who has had Genetic Testing for Drug Metabolism?
I have and it has been spot on with understanding why over the years I have had sooo many side effects with different drugs.
At this stage the testing is not covering every medication, but it is improving it's data base the more people do the test.
It has been helpful when I have had my lumpectomy, my anesthetist tailor made my drug regime and I had no horrible side effects from the sedation or pain killers.
I was also able to see that Tamoxifen is a no go for me. I was interested to see why, so I rang the genetic testing company to see why it came up as Red when I typed it in on my report. They told me that I may or may not have side effects, but I will not metabolise the drug to make the effective ingredient for it to work.
I have told my onlocolgist this, and she is insisting I try it.
I had severe side effects with Zoladex, the physical, while crappy, I could put up with. But the mental side effects were debilitating; Severe Depression, Anger, Irrationality etc, hence we did not start the aromatse inhibitors.
My oncologist used a tool on the web (I think this has be spoken about in another post) and said that if I stopped taking the Zoladex that my 10 year survial rate would decrease by 2.7%. I was willing to take those odds, and we both agreed to stop the Zoladex.
But my last visit, she wants me to start the Tamoxifen, because, some women do not have any troubles with it. :/
Again I do not want to, because 1. my genetic test and the company say that studies show that my genetic make up will not metabolize the drug to make the effective ingreadient; and 2. I do not want to add to the horrid mental side effects that I am experiencing ( A little less now that I am not on Zoledex) but still life disruptive.
Because of my Genetic make up, I can't take nearly all of the antidpressents used to treat the side effects either.
Im about ready to find another oncologist that will listen.
What other alternatives to Tamoxifen are there? Other than Zoladex and Aromatase Inhibitors?
Is anyone out there not taking anything at all?
Thankyou for letting me rant,
xo
Heres a link to the genetic testing I had done if anyone is interested.
https://www.mydna.life/medication/
23 Replies
- EAAMemberDear Sisters.. is it true to say, that Tamoxifen has given you
one enormous hit of menopause stopping your natural biological process? I think it’s called ‘ medical induced ‘ menopause.
If this is the case your GP or Onc should be able to treat and limit
the excessive symptoms. The cyclic control going on and off tamioxifen makes sense. This stuff is full of risk taking !
Collaborating a Tamoxifen regime between the onc and the GP
sounds good. . I’m not sure if splitting the dose.. taking half in the morning and half at night would make a difference. The GP and Onc
need to be in the discussion. But, the trigger word I think, is
Tamoxifen Induced Menopause. Talk your feelungs then ask the question.. Has Tamoxifen started an early menopause in me?
And What can you do to give me back my life!
Hopefully, the GP and Onc can give serious thought to it and suggest a remedy.. Tell them your own ideas..
good luck.. Many younger women will benefit from your outcomes.
Hugs all round. - kezmuscMember@Mjheke,
I feel for you lovely. For those of us who get the full run of side effects plus a few that aren't on the list this thing interupts every aspect of your life. From you brain function to your love life to your sleep patterns. Like you, I had felt pretty good, all things considered, after active treatment ended. For the first four months of taking Tamoxifen not one part of me actually felt like me. The mood swings, the atomic hot flushes, (some of those were from chemo menopause though) the tears, the not being able to string a sentence together, insomnia etc etc and the list goes on.
I understand how you feel being in the cloudy fog of doom as I like to call it. Being alive, absolutely thankful for that, but not living. Who wants to wait a decade feeling like sad trash to see if it works anyway??? I have tried every available supplement that I thought might help, tried accupuncture for the bone pains etc and couldn't find anything that would make a difference. The one thing I think helps a bit is evening primrose/starflower and a shit load of vitamin b seems to help the brain function.
To continue or not is a personal decision based upon what you call an acceptable and enjoyable quality of life. I have played with the drug and tweaked and manipulated the situation to suit what I consider a good middle line.
Now no oncologist is going to recommend this but as mine says it's better than not taking it at all. No matter how wonderful and understanding they appear in the office It's their job to recommend what's considered the best course of action for you, but they don't live with it.
Out of the 100 weeks I so far that I have been prescribed T I have taken it for 75. I had my first break at 4 months and have continued roughly 3 months on 2 or 3 weeks off. As soon as that fog comes back and I feel like a sad shadow, I'm off it. If there is a holiday or it's christmas time or such, I go off it for so I can totally enjoy myself and feel normal. Not every side effect disappears in that short break but it does make a hell of a difference. Kind of like a reset button to go again and of course time plays a factor in there as well.
It's a good result for me. I feel I control the drug, it doesn't control me and it sure beats the heck out of jumping off a bridge. Have I made the right choice? We shall see. But I am comfortable with the fact that I would never have known anyway.
Lots of love and luck.
xoxoxoxo - EAAMemberDear Mjheke what a shocking time.. I’m way past menopause and
had severe brain shutdown on Tamoxifen I could get back onto Arimidex.. but, it’s hard to believe that Tamoxifen s the only option for
pre menopause. My first tumour was treated in Canberra and I had
unquestionable Care. Canberra is said to be one of the best States
to get good care. If I remember, on the last BCNA webinar on Hormone therapy, I think it was mentioned about having a break then recommencing. But, I’d be wanting a clinical explanation from your onc as to why the effects are so limiting to your activities of daily living. Another consideration is any other drugs you may be on including natural therapies. Talk talk and talk.. until the onc finds a remedy and talk with us.. your virtual sisterhood... we’re here.. always.. hugs coming your way..
I found Amazonian very interesting.. have you considered having
a pharmacogenetics test? More ‘Ching ching’ To someone but
a point to mention to stir your oncs thinking. - kmakmMemberI feel you @Mjheke. I have had the same thoughts for the same quality of life reasons. Letrozole related for me. It's so very challenging to reconcile before BC and after BC. I had a session with my psychologist yesterday. We are working on acceptance. After over a year on Letrozole I've shifted a small bit in that I'm trying to focus on coping mechanisms, rather than getting caught up in the struggle against/about what has happened to me. It's taken 20 months but I feel like I'm taking a tiny step in the right direction. It's a work in progress.
I wish you luck and respite. Keep talking here. Big hug, K xox - MjhekeMemberI am up in the middle of the night-insomnia I am sure a side effect of Tamoxifen. I have been on it now for nearly 6 months. I am also seriously thinking of stopping. I am miserable. I have a history of depression, and had been on Valdoxan (melatonin based antidepressant) prior to my diagnosis last year. Even after diagnosis, surgery and treatment-aside from a few post-op complications, I still felt the best I had in a long time.
That was until I started taking tamoxifen. Now I am the most depressed I have ever been! I had previously been on HRT because my menopausal symptoms were dreadful. Of course because my cancer was 100% ER positive, that had to go. Now I think with Tamoxifen blocking the rest of my oestrogen, it is exacerbating those symptoms I have terrible night sweats (4-10/night)and have given up alcohol as that makes it 10 x worse!, hot flushes all day, fatigue, low libido, and the list goes on. I am also sure that for me it causes urinary frequency as it started the minute I started Tamoxifen and when I had a quick 3day trip to NZ recently and forgot to take my Tamoxifen with me that all disappeared. I went from peeing anywhere from 2-4 x a night and approximately 8 x before lunch to 4 x/day and not getting up at night at all! My quality of life is poor, all of the things that give me pleasure, I can either no longer do, or I no longer feel like doing. I am constantly fatigued, I will discuss all of this with my oncologist this month at my next appointment.
I am not suicidal, but I do think, what is the point of taking something to keep me alive if that life I live is spent feeling the worst I ever have?
M - kmakmMemberI agree with @EAA, I think a decision will emerge through your questions and research. Either way I'm finding it interesting reading! Hang in there, K xox
- EAAMemberDear Amazonian..keep unravelling the maze.. A decision will come to you. xo
- AmazonianMemberThanks for the responses. X
Still not really in a better place in regards to my Genetic info. Saw a brilliant Oncologist at Peter Mac and she is also saying that there is still controversy around the evidence and or data about how the Pharmacogenetics of the CYP2D6 genome will metabolize Tamoxifen.
I asked if I do take it, could we monitor the levels of the active ingredient. She said no, because regardless of the levels it might be still helping in some way. This sounds an awful lot like antidepressants to me 😡 We don’t know actually how they work, but they might 🙄🙄🙄
It’s complicated I suppose...you read good sources of information, and you just wonder... maybe they don’t always get to see the most up to date info???
Anyway Ive rang the place where I had my genetic test done and am awaiting a phone call back from a geneticist... hopefully this will help with my decision.
I have had the Endopredict test also. I was just over the median of reoccurrence risk. That test DID help me make the decision to have Chemo.
Thanks again for letting me vent !
Much love 💕 - EAAMemberCorrection.. The test is called “Endopredict”.
- EAAMemberThanks Amazonian for very interesting link.
All about Risk.. Good luck in your decisions.. Hope you find an Onc who gives you personalised care respecting the information you’ve gathered. Do the variations in your blood stay constant or can they vary given certain conditions. Also, what does your histology report
say about your tumour.? There is a test called End Predict that gives
an idea of risk of recurrence.