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melclarity's avatar
melclarity
Member
9 years ago

Oncologist visit yesterday, am being pulled off Arimidex for 6 weeks..

Hey everyone!

I had my Oncologist visit yesterday as I had a reminder last week, I did call and say I didnt need to go as I have surgery in a week haha...the lovely Secretary laughed and said NO youre coming in. So he was pleased to hear of my surgery as we laughed as I said I wasn't haha! So we discussed how things were going and particularly as Im on Arimidex and he's decided to pull me off it for 6 weeks and wants me to journal and log all things that are apparent right now...and that way he said he can work out if it is the Arimidex or just Menopause. He does this with some of his patients because sometimes its the medication and sometimes turns out all the side effects are in fact menopause and unrelated to the medication. If it is the medication he will look at changing to a brother or sister of it LOL which I didnt know there was, but he said I couldnt do Tamoxifen as it wasnt effective. He was aware of the latest news from the Breast Cancer Foundation on the findings of Tamoxifen not working in 1/3 of cases and how its learnt to grow inspite of it and replicate. He agreed it seems to be the case and did say that my recurrence could have been attributed to that....BUT I also had radiation too...so he CANNOT EXPLAIN IT...apart from Cancer is SNEAKY...WOW that gave me confidence after having undergone life changing treatment wih Chemo in my recurrence 2015 LOL.

He also said if you have high Oestrogen levels on Tamoxifen, do not be alarmed!!! it simply means it is working, and not that you are higher risk of recurrence.

Thank God for a sense of Humor!!!! Yippee!!! Oh but have to go back on Arimidex at 6 weeks. Eventhough Im like I have surgery next week how the hell am I going to track my side effects dealing with that!! :/ 


hormone-therapy
mastectomy
side-effects
  • Harlee's avatar
    Harlee
    Member
    9 years ago
    Mel I'm sorry you're in so much pain. I'm on Arimidex too and know exactly what you mean about walking like an 80 year old! I really hope my house never burns down in the middle of the night (funny the things we think about isn't it!) because I will be stuck  s l o w l y  crawling out of my bed. 
    Your doctor has stopped Arimidex for 6 weeks so don't give up yet. I have read (can't remember where?!?! - thanks chemo brain) that it can take a while for the side effects to go away.  
    Good luck with your surgery!
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Thanks Kari! Im definitely going to wait and see however I said to the Oncologist isnt the timing wrong?? as im having surgery monday how on earth can I know if Im different when dealing with all of that...he's like you'll know pfffft! Aaaah mind you I love my Oncologist but they have NO CLUE!!! as they havent been through any of the treatments they prescribe :) lol I think if you start the Exercise Physiologist first do your ground work honestly its going to get you moving quicker than a PT as they just dont have the understanding or specialize in this area..Id then build into the PT when youre comfortable..slow and steady wins the race...too much too fast sends you backwards as my Physiologist says. They absolutely work!!! lol
  • Kari_2015's avatar
    Kari_2015
    Member
    9 years ago
    Oh Mel, it sucks doesn't it, anyone who says money doesn't make you happy haven't had to got through medical treatments and rehabilitation!!  Maybe it will take a couple of more weeks before the drug is totally out of your system?
    Trying to plan for an unknown future is really difficult.  Hope you get through these couple of hurdles....
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    I just wanted to say Im a week now off Arimidex and to be honest there has been little change to my pain, legs and feet particularly and lower back. I am starting to think now its all from Chemo, I wasnt like this pre treatment and I fear I wont be the same again, the joint pain is horrendous and as much as I love my Exercise Physiologist and walking nothing is helping this particular problem. The stretching helps my muscles and is fantastic but everyday I get up and walk like Im on hot coals!!! and like Im 80 years old!!! even if Ive been drivng for an hour!!! same thing...its impacted my job incredibly to the point I am going to have to leave when my income protection runs out. Its so upsetting and now with surgery another major setback...in  a way I have to look into the distance as to what Im going to do as I have to work...this is the part where I think if I were still married I wouldnt have had to work these past 6yrs and my struggles would not have been anywhere near what they have. Alas! challenges for a reason and another hurdle to work through I guess. 
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Thanks a bunch Marg! You are absolutely right, Im 14 months post Chemo and treatment now, I wasnt put on Arimidex until I was 6 weeks post Chemo. Certainly the time now I couldnt think of anything worse tackling this in the midst of treatment LOL No way!!! It is great to be this far along and out the other side. Im loving my Exercise Physiologist and how far Ive come...now to work this pill out uuugh!!! To be honest Id just put up with it, but if it is ARimidex and we can try something different that fits better would be so great! Happy and healthy and OMG surgery in a week...still freaking and I can be honest I think if it was a skin sparing and implant it wouldnt be half as hard to come to terms with how I will LOOK...with a Diep Flap...Ive read all the stories here and photos so have a head up but still a struggle..Im large breasted too Im  size 10 but E Cup...Oh how God blessed me hahaha! with big boobs! and yes what a journey to have to let go, and knowing they are not the essence of who I am at all...that is so key...we all have things we don't like about ourselves and somethings we do..this was the one thing I did...so onward to the new me and new journey...xo
  • Zoffiel's avatar
    Zoffiel
    Member
    9 years ago

    That makes sense. The only way to find out if you are sensitive to the drug is withdraw it and see if the symptoms persist.

    I think many of us are caught in a perfect storm. If you are peri-menopausal when the poo hits the fan, it's always going to be difficult to isolate avoidable issues from the general awkwardness of our bodies changing because of our age.

    There is so much going on--I've pretty much given up trying to figure it out for the moment and decided to ride it out until all the acute stuff is over. I'll deal with pain issues when they become debilitating but I've decided to wait until chemo, rads and maybe some more surgery are over and done with then pull the whole lot apart and see how the remaining elements, including hormone treatments, are affecting me.

    Good luck with your surgery--worry about the rest when you've crossed that hurdle. You'll have time to tinker around  with the meds later if the current experiment doesn't work out.

    Marg

  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Hey Cath, my Sister!!!! LOL yes am open minded either way, it could well be menopause and meds well dont help but arent the major contributor to alot of the symptoms. Am tipping the joint pain is the major one, we shall see! Sounds good to me!! :) xx
  • socoda's avatar
    socoda
    Member
    9 years ago
    Hey Lovely, I reckon you'll be able to track changes no problems. Sounds like your Oncologist is very proactive which is excellent. Going to be interesting to see if your symptoms decrease or disappear over this six week period. And at least he's looking at changing you to another tablet - maybe the side effects of the new one would be to make you feel fantastic!!! ;) Xx Cath