Alternatives to Zoladex and Tamoxifan? & Genetic Testing for Drug Metabolism

I know it doesn’t help but the generalising of treatment (‘it helps in most cases’) is a phase in any developing understanding of a  complex disease. It applies to almost anyone with cancer, and doubtless to rare diseases. As has been said many times, breast cancer treatment has improved a lot in the last 30 years. No, it’s not perfect and not yet fine tuned to individuals. My choice is to support research and make my decisions on the best advice I can find and trust. I am lucky to have medical advisers prepared to say “ we don’t know yet”. “Yet” probably will come, too late for me in all likelihood (30 more years may be past my use by date!) but it will come and benefit countless others. In the meantime, yes let’s support advocacy groups, let’s speak out about the impact of treatment but we need to be our own advocates too. 

Oh dear.. so much to do to personalise each persons treatment and put each of us at the Center of that care. We are the lived experience.our consent to any treatment needs full disclosure..
so we consent in our best interest. How do we argue against powerful guidelines that are inadequate. .that protect the practitioners. Sometimes, I wonder if the guidelines are there not because of best practice but a regulation to protect against overservicing. The Guidelines regulate the industry.. not particularly
helpful in our living experience. Stats can be used to argue anything.
Doesnt mean they are representatively true for all and individual 
experience should challenge them. What the onc quote in generic
answers seems to be a smoke screen for their own protection! 
Do no harm has been quoted to me.. to exclude imaging.. but what of the suffering induced by hormone therapy! What of the unknown long term effects of Chemotherapy, what of false negatives of Mammograms. What if Radiation burns.. Treatment does inflict harms! And it is argued that the benefit will outweigh the harm.. 
More precise treatment is needed to treat the disturbing effects of treatment. We women and our bodies should not be dismissed.
where is our collective advocate .. ..There is enough evidence BCNA
to advocate for change in cultural entrenched medical attitudes of 
‘Do nothing’.. suck it up... 


. 

Totally agree @Sister. A bit of a broader acknowledgement and understanding would be nice. The webinar I took part in was an excellent example. Eminent doctors extolling stats about how wonderful these drugs are but ignoring or dismissing the questions about people's efforts to deal with the side effects in order to keep taking them. It's very frustrating.

We all wrestle with how to respond to bad and horrible news. We write here about the stupid things people say to us in response to cancer. Many of us would like an empathy button added to the forum. I want the medical people to have a empathy button. Just once I'd like a doctor to say to me "I'm so sorry you're having all these side effects, it's really rotten". And follow it with a "Let's see if there's anything we can do to help". Hurrumph...

Recognition of the side effects would be good.  Not just "oh yes, some women get that", but a whole-hearted acknowledgement that this exists for many and that it seriously compromises the quality of life.  Until then, I doubt that there will be much done about it.  I won't stop taking Letrozole unless I can't actually move, but I know a lot make that decision.  (And it seriously annoys me when I see stats about women stopping treatment accompanied by an implied "can't understand why they don't realise how wonderful it is")

@Mjheke @Wonk I have never experienced feelings of not wanting to be (excellent phrase) in my life (I'm 53) but now have them regularly. They scare me and I'm very careful about how and where I am when I'm experiencing them.

These medications are pernicious, but the best we have. Yes, some people have little to no trouble with them, but look, in one little thread, in the space of a few days, there are several of us writing about the same serious side effect.

I know the doctors don't want to scare us, they don't want to frighten us into not taking these medications. The benefits into lengthening survival are clear. However I too wish they'd be more honest and transparent about them, that the whole breast cancer 'industry' would be more open. Surviving is good! But surviving at the expense of your happiness, surviving with the risk of developing other serious health conditions, surviving to manage chronic pain, doesn't really get much of a run in the survivorship PR does it...

I am speechless at all you both are going through..hugs all round 
and hope that remedy and relief will come.. it’s a hard choice but 
if you went off the hormone therapy would the oncs consider using
imaging to monitor for recurrence perhaps MRI ? 

@Wonk, I was on Tamoxifen for four years  and felt like I was ina permanent brain fog, not fantastic as a teacher!! I also endwd up feeling extremely anxious and teary, my oncologist put me on lexapro, an antidepressant, which helped me feel bettwr but certainly didn't help brain fog. Four months ago, aftwr constant gynae problems my surgeon switched me to Arimidex. Although my hands are quite painful, and my hips and s hboulsers ache,  i can finally think again!! My head feels much clearer! Definitely worth a try!!
Best of luck xxx

I'm not good at computer stuff, but for those interested in the metabolism of opioids and the enzymes involved, google this.  Opioid Metabolism and Effects of Cytochrome P450 / Pain Medicine... According to a professor at the pain clinic of the large Sydney public hospital where I'm a patient, I lack two enzymes needed to metabolise opioid based medicine. This is why any of them just make me violently sick and do zero for pain. It's a long and detailed medical article, but explains very well the link between enzymes and the metabolism of numerous drugs.

@Amazonian, sorry to steal your thread! I am definitely interested in the genetic testing for drug metabolism. I will have a look into it. I seem to be very sensitive to most medications, and don’t tolerate most antidepressants, opioids, or benzodiazepines. So I stay away from these. 

@kmakm, Kate, lovely to hear from you and I am pleased you are finally making progress. I am certainly finding it all a bit challenging and also trying to find the best way ahead. Maybe acceptance is all we can do. I am doing everything else I can. Eating well, exercise, I have stopped drinking alcohol altogether as it sends my night sweats through the roof. @kezmusc - atomic is a very good description of how it feels. I have 4-10/night. Thanks for your thoughts x

@EAA, I saw the surgeon Friday, who basically to every side effect I had said, yes that’s common. I am actually post-menopausal, and was first put on Aromasin which within a week I could hardly walk with severe bone pain and had the same in my hands/wrists with associated weakness, where I couldn’t lift the jug to pour a cup of tea or lift a full drink bottle to my mouth. My then oncologist (I am now living in Canberra and have a new surgeon and oncologist), said that I would likely have similar side effects on the other AI’s so went straight to tamoxifen. My new surgeon thinks it likely I will be told to stop tamoxifen and try another AI again. @Wonk, yes, I remember we started this at the same time and have wondered how you are getting on. I feel none of this side of things is openly discussed prior to the start of any treatment. And I certainly feel it is pretty much brushed under the carpet once it occurs. I also have ongoing pain from my surgery, which they now say is from radiation scarring and likely it will continue for he next at least 2 years, possibly forever. That was never discussed with me either. I feel I am just told to take another pill to counteract the side effects of both the pain and effects of tamoxifen. I have also felt such despair that I don’t want to ‘be’. As you say-ironic considering what we have been through. 

I see see my oncologist at the end of this month. Hopefully she will have some insight for me. I will definitely be stopping tamoxifen, so looks like I will go back to AI’s. let me know how you get on with Arimidex. All the best. 

Don’t get me wrong, I am grateful to be here. I just think more honest information prior to treatment would be helpful. Because survivorship is not all it’s cracked up to be. 

M x

Hi @Mjheke I just came online again after a break and I saw your post about Tamoxifen.  We started our journey together last November.  I also started Tamoxifen 6 months ago and have spiralled into a different person which I hate. My major side effect was anxiety at work. I double checked everything, filled 4 x A4 books with data that I just kept writing over and over. I would wake up at 2am panicking that I hadn’t done something, would log onto my computer to find I had. I was going crazy. I also agree with you about weeing more often at night and suffering insomnia. My oncologist stopped Tamoxifen for 3 weeks in an effort to reset my brain but once I started again it got worse.  One weekend in July I just couldn’t function and didn’t want to live anymore.  Which is ironic after all you come through with BC.  Anyway I’ve been on another break for two weeks, feeling so much better before I try a different drug.  I will now start on Arimidex tomorrow.  I’m hoping the side effects will be more physical than mental. That’s what brought me back to the forum. I was just looking for people’s experience on Arimidex.  Feeling scared because I don’t want to experience the same effects as Tamoxifen again.  Talk to your oncologist Michelle and see if there are other options for you.  Thinking of you xxx