To laugh or cry.........that is the question...HAHA!

iserbrown

@melclarity the link below speaks of eye problems on Tamoxifen.  Hope it helps

http://www.mayoclinic.org/drugs-supplements/tamoxifen-oral-route/side-effects/drg-20066208

melclarity

Thanks @iserbrown yes I think its the combination of used Tamoxifen 4yrs and been on Arimidex over 1yr, I believe all of it has stemmed from medication. Thing is I think we just put up with alot of things because we dont like the thought of not taking them. So I want to sit down and talk to the Oncologist, though I know it will be downplayed. I can just not take them at all, so we'll see. x M

iserbrown

@melclarity And they wonder why we get a little bit nutty!  Yes it doesn't happen to everyone however the odds are not good!  Here's hoping your troubles are reversible in that off the medication and onto something that is more suitable as the end game is to be rid of and not return............., for you the script wasn't quite right, recurrence...........it would seem the cure is more difficult than most of us would've thought!

Take care and let us know how you go with the diagnosis around your eyes. 

For me scanxiety this week is heightened as I go for my review.  Yes I am fine but it is the been there done that don't particularly want to do it again until the appointment is over and I can go phew! I will keep busy

Take care and sending you a virtual hug xx

PaulaN

Hi I've been on Arimidex, Femera & Tamoxifen. I had to go off all of them due to side effects. We're all different, I guess I'm just one of the lucky ones LOL
Paula

melclarity

@iserbrown Well a blood test revealed I do not have Diabetes which is what the Optometrist thought may be the culprit. So no answer. I have my Oncologist visit in a few weeks, so we shall see what he has to say, I think he'll be non committal  

Aaah @PaulaN well I may be following suit LOL, Im not fussed to be honest as I said, Tamoxifen didnt work anyway, I still had a recurrence so why should I have faith in Arimidex or Femara?? 

PaulaN

Hi melclarity I figured if I was going to have a  recurrence without the medication I'd rather fight it sooner rather than later but that's just me.

melclarity

@PaulaN I completely understand your thinking actually. For me I had a false sense of security to be hit 4yrs later, as so many women theres no consistency so random, a year later 5 or 10 even. But like you Id sooner face it earlier than later. I sort of wonder, you take the pill for 5yrs generally but what does that mean after that? always wondered that, to me if they wanted prevention why isnt there a medication that protects for life? Who knows so complex, but am over the reduced quality of life since treatment. This phase of my life is OVER! so onward we go in pursuit of a reasonable health and life.  

Deanne

Quality of life is important to us all. As individuals we will have different reactions to treatments and for me it has been important to find a balance between recommended medications and quality of life. I am fortunate to have had good general health before bc and have preferred to try and counteract side effects through diet and exercise wherever possible.

I understand that Femara has the potential to make a big difference to my chance of recurrence (different for each of us depending on individual pathology) so I try to find ways to limit its negative effects on my quality of life.

Every medication has potential side effects. When it was discovered that I had bone density issues after being on Tamoxifen (this has negative bone effects for pre-menopausal women, which it turned out I was after chemo effects wore off) and then Femara (after ovary removal), it was recommended I start Prolia. 

Side effects of Prolia include high cholesterol (maybe one side effect too many for me) and potentially reduced immunity amongst other things such as actual increased chance of fractures if you stop Prolia (the mind boggles ??). I searched for alternatives to medication and found a research based weightlifting program. For me this felt a better option and after just 6 months on this program my bone density is improving.

My cholestrol is already higher than it was due to Femara, but I seem to be managing this with diet and exercise too. Fingers crossed this continues. 

I guess I have learned to ask questions and do my own research rather than just take medications that appear to offer "improved health outcomes". Interestingly my doctors have all been supportive of my medication alternatives (diet and exercise based) but I have had to do the research myself and be prepared to commit to on-going programs.

For me this gives me a balance between medication (Femara) and quality of life that I feel ok with. I agree that quality of life is something we all deserve and want after 'active' treatment ends. The impact that on-going issues have on our life is something that doctors seem to underestimate or almost downplay. But for us it is about achieving the best life we can, not just staying alive but really living again. Medications are not necessarily the best answer for everyone. I guess all we can do is find out as much information as possible, ask questions about our own particular situation and then go with what feels right for us.

Good luck with your oncologist visit, @melclarity. I hope you find a way to achieve your best quality of life. xxx

melclarity

@Deanne Thank You so much for your detailed response! I absolutely agree with you, and I JUST REALISED I have 2 Prolia injections a year, maybe thats why my Cholesterol was high!!! UUUGH!!! I was fine pre BC too so frustrating and I like working with my Exercise Physiologist, its been fantastic, so im looking forward to doing so much more. I love the idea of the weight bearing, I used to do it when I was young. There are ways to manage it you are right. So I wonder now whether 4yrs on Tamoxifen killed my bones!!! then had a recurrence and Chemo really killed them then!!! It does get difficult when youve had more trouble from the treatments than the actual BC and I know depends how you look at it. But it really messes with your head doesnt it?? Onward we go! xo

iserbrown

Deanne said:

The impact that on-going issues have on our life is something that doctors seem to underestimate or almost downplay. But for us it is about achieving the best life we can, not just staying alive but really living again. Medications are not necessarily the best answer for everyone. I guess all we can do is find out as much information as possible, ask questions about our own particular situation and then go with what feels right for us.

@Deanne - what a powerful sentence or two you have said here
It is so true, it keeps on giving in that the side effects have such an impact and are not given enough credence, or at least that is the impression we have when we are in this predicament.  Thank you for an thoughtful response to Melinda.
Take care and wishing you better readings with your cholesterol xx

primek

This makes interesting reading and why now 10 years instead of 5...or why it may be offered. As we know though cancer can adapt so it's always possible with recurrence this is what happened and why recurrence has happened.

http://www.breastcancer.org/research-news/20130604

melclarity

Kath definitely an interesting read, 

http://nbcf.org.au/news/research-news/breast-cancers-produce-own-estrogen-to-evade-treatment/

What seems far more beneficial is them devising a test to see if the particular medication is working as in 1/3 of cases it doesnt as its learnt to adapt and evolve.  Only Then it would be more successful. Would have been helpful for me as maybe had I known tamoxifen wasnt working i could have been on a different one. Hopefully this is their next step.