Forum Discussion

wendy55's avatar
wendy55
Member
10 years ago

affinitor and aromicin combo

Hi, everyone, it has been a while since my last post and it seems since the new website has been up and running that not as many ladies are making posts or is it my imagination!.

Well it has now been 7 and a half months since I was put on the affinitor/aromicin combo, the first few months were very interesting to say the least, mouth ulcers were the biggest culprit as far as side effects go, but after two episodes of having a break for seven days due to my inablity to be able to eat due to the severity of the ulcers everything has settled down and apparently for what ever reason having a break of the affinitor twice seems to settle everything down no more ulcers! my last blood test on March 25th showed my cancer/tumour markers are now sitting at 31!!!! yes 31!!! I couldnt believe it, and my oncologist has said whatever I am doing to keep on doing it - so obviously the drug combo I am on is

working, I know that we are all different and yes it was hard in the beginning - very hard, but I was determined to perservere for as long as I could, so to any ladies out there who are looking at the prospect of these drugs, please dont be deterred,they are not as frightening as you may think, so long as you have a breast care nurse to help you, along with help with from your oncologist, you can adapt your lifestyle around them, at the moment I still get tired in the afternoon and a nana nap is on the cards most days, but life is not too bad, yes more blood tests in 4 weeks, then 6 weeks after that, then more scans, the usual medical merry go round, but with a holiday up the east coast in our caravan in the not too distant future I am very grateful - so with a 60th birthday looming I will live every day as best as I can.So thank you to all of you ladies whatever stage you are at,its so good to be able to connect with you all, to laugh and to cry and to know that we are not alone.

wendy 55 

 

 

 

  • Robyn_W's avatar
    Robyn_W
    Member
    10 years ago

    Hi Wendy,it's good to hear from you!! No, it's not your imagination,it's different here now:( I thought that once people got over the initial shock of how different it is,they would just get used to it.( me included) but it doesn't seem to be happening.Never mind,we continue on I guess,cause we have no choice if we want to be part of this network,and I definitely do!! You sound so positive,and your post is so informative and encouraging for other ladies in a similar position as you.Please stay in touch here,and as Summer says,get your seniors card! I just got mine,and it is the source of lots of jokes about me in our house!!!Its really great though,andI now have my senior opal card,which truly is a REAL money saver!! Take care.Cheers xoxRobyn

  • wendy55's avatar
    wendy55
    Member
    10 years ago

    hi -thank you for the info re the seniors card I had completely forgotten about it too much else going on! I too have monthly vitamin b 12 injections I also take a  low dose of aspirin everyday, I read a bout a study done in the UK that had researched women with breast cancer and found that taking a low dose aspirin every day kept inflammation at bay and subsequently they foudn it extended their life span, well I asked my oncologist and he laughed but said it was okay, so I have been taking one aspirin everyday for about 6 months, I dont take it whe I have to have a blood test the next day and always tell anyone in the medical profession that I deal with, who knows if its doing any good but Ill try most things! my oncologist also explained that he had found that by the stop start method on affinitor that after sessions off the mouth ulcers disappeared, also found manuka honey the strongest possible 30+ helped, I would used a coton bud and place it on the ulcer, and yes it would be great to see the live feeds come back straightaway it gave you a point of reference to see what was being discussed on that particular day - keep well

    regards,

    wendy

  • June1952's avatar
    June1952
    Member
    10 years ago

    Hello Wendy

    Well, firstly, welcome back to the network.

    Happy Birthday for whenever it is !  Don't forget to complete and send off your application for the Seniors Card !  Even 5% off things does make a difference and most caravan parks give us a discount.  Even if there is no sign in shops etc always ask as most will give you a discount - but they are not allowed to ask if you are a senior as some people get upset.  Me - I did not mind turning 40 or 50 but that 60 was a real worry - so my friend sent me an email telling me to look forward to discounts !  Ha ha.

    You are right, not as many ladies are blogging these days, sometimes because the system is not so user-friendly but I think that lack of 'live feed' at the bottom means ladies have no subjects of interest popping up for them to comment on or help others with.  Hopefully BCNA will bring it back soon.

    Good to hear you are coping with the drug issues, it can be a trial and error thing.  I used to get a lot of huge mouth ulcers and was given vitamin B injections and that helped break the cycle - now I drink a mug of Vegemite as soon as I see one appearing.  May be worth asking about.

    Keep on blogging !

    Regards

    Summer  :-)