Thanks for that Liz,
doh! I should have realised the meaning of AI. A cynical "bc" dictionary sounds good to me, I might just ask if changing the AI would help me, however they were going to discharge me until I mentioned the trial of femara to them, they did their tests and proved I was eligable for it, so I kind of don't want to rock the boat.
Yours feeling humble to the powers that be (oncs)
just to add my twopenneth, my partner was on Femara from October last year to January this year. She already had secondaries so not sure if this made a difference to way onc dealt with it, but after several months of him saying symptoms should settle, he finally decided to change her to Aromasin, and presto hey, all dreadful aches pains numbness pins and needles painful feet disappeared.
Now as I said she already had secondaries, so perhaps changing from one to another carried less 'risk'? It would be a good idea to ask your oncs why they chose that particular AI over another and what the risks maybe in changing. At the end of the day you should have more input into the decision as it affects your quality of life, but with the information you may decide that the side affects are worth it.
Hi Bunty -
AI stands for Aromatose Inhibitors. I take Arimidex and have no problems.
Aromasin and Femara are also AI's. I believe they block oestrogen and are prescribed to prevent a recurrence.
I have sometimes thought about writing a cynical "bc dictionary". Such as: "Chemotherapy - poison they shoot into your veins that makes you nauseous, fatigued and very unwell."
Just wondering as Pink Linda stated i have the same problem getting this drug from the chemists, they all look at me strange and say we have not got it in and we will have to order it why is this surely there must be a lot of people on this drug or is that not the case
Thanks everyone for your input, and please forgive my lack of knowledge, but what is an AL? please. I am to see the onc. in September and I will discuss things with them then. I am on a trial basis really to achieve the numbers of "survivors" God I hate that term it always reminds me of people drowning at sea. " There were such and such survivors"
Also I found the fact that cholesterol levels may increase, worth me having a blood test I reckon, then I can take statins as well as all the rest of the arsenal of pills Yipee..
By the way Rosamund, I am sorry to hear that you are worried about a dry vagina etc and being newly wed, but I guess I have been drying up for years and so this may not even affect you. I think I was most probably destined to be a nun. Because the best sex I ever had was when I was on HRT, and that only lasted a few years!!
As for what will happen to us when the five years are up, who can tell? maybe we will be cured forever, or maybe another drug will be out by then.
On a lighter note, I feel a bit better to know that I am not alone in all this mess we call "Life"
I took them for 2 weeks. Should have been 5 years. GP said he was surprised I took them for so long as side effect were so severe and so sudden.
Don't know how I feel at not taking anything. I'll ask about trying another AI when I go in November.
District nurse came this morning to check on me and I told her tale. She agrees with asking in November.
I can't belive your onc didn't suggest anything else Marilyn. How long had you been on Femera and how long do you have to still take it. My onc told me that I had to take AIs, so that was why he changed it, as I refused to take any more Arimidex. Can't you get a second opinion from another oncologist? I'm not sure how it works over in Uk though.
Do you feel comfortable with not taking any more AIs? Love Roz x
Went to see once yesterday and told him tale. He said it was my choice whether or not to take them. Didn't offer to put me on anything else. Come back in 3 months.
I was so relieved at not having to see about any other side effects I didn't think of why he didn't try me another one.
Anyone any ideas
I'm sorry you are having such dreadful side effects with Femara. Is Femara the only AI they will put you on? I was put on Arimidex in 2003 and after a year refused to take it any longer as I had such dreadful joint pains, I couldn't even get out of bed in the mornings with pains in hips. Well the oncologist tried me on Aromasin over 18 months ago now and I have hardly any side effects and have only another 2 years and I will be finished. Can you not ask your oncologist if you can change and be put on something else to at least try for 3 months.
I have no joint pains on Aromasin just slight stiff ankles first thing in the morning but once up and walked around the house I am fine. I feel good on it too, which is nice as I got so depressed on Armiidex. Since getting BC in 2003, I also went down with brain cancer (nothing to do with BC though, which was wonderful) last year and have coped so much better being on Aromasin. I don't know if this is any help to you, but I know how desperate you are feeling as I had the same problems with Arimidex. Lovde Roz x
My onc put me on Femara at Easter. Itook it for 2 weeks and the side effects were so bad I stopped. I am still stiff in most joints and they don't seem to be getting much better, although I can now hold a book now so can read again.
I was already on BP medication and GP was considering upping dose as it had gone up and I was getting palpitations. They had already agreed to check BP every 2 weeks as strokes are common in my family.
Every time I stand up or bend down I curse those b....y pills.
Go to see him again tomorrow and expect to be put on Arimidex. Another thing to look forward to - not.
Hi, Bunty, Lucyloo &Rosamund,
I began Femara about 4 months ago after 5 years of Tamoxifen. My oncologist tells me I will continue to take it while it remains useful which is a nice way of saying until your cancer returns.
I have also developed high blood pressure and high cholesterol. I have been prescribed a statin for the cholesterol and am having my bp monitored weekly for 6 weeks after which time I will probably need meds for it.
I also get joint pain especially in my fingers. It was good to read a post about Femara as not many people seem to be on it and I went to 4 chemists with my prescription and none kept it in stock but could order it in which also made me think it cann't be used a lot yet.
Best wishes to all and hope our side effects improve with time.
JUST TO RELITERATE ON WHAT YOU POSTED I HAVE BEEN ON THIS DRUG FOR ABOUT 2 AND HALF YEARS AND HAVE DEVELOPED HIGH BLOOD PRESSURE WHILST BEING ON IT INFACT I AM TAKING FOUR TABLETS A DAY FOR BLOOD PRESSURE ALONE AND IT REALLY GETS ME DOWN AS MY GP SAYS IF I DONT TAKE THEM I AM AT HIGH RISK OF HAVING A STROKE OR HEART ATTACK AS IF WE HAVE NOT GOT ENOUGH TO COPE WITH,
JUST WONDERING WHAT HAPPENS AFTER THE 5YEARS IS UP ON THIS DRUG IS THAT IT OR ARE WE GOING TO BE OFFERED EVEN MORE HORRIBLE DRUGS AND AS FOR SEX DRIVE THATS TOTALLY GONE WOULD FIND IT IMPOSSIBLE BECAUSE OF THE VAGINAL DRYNESS AM DEPRESSING MYSELF EVEN MORE NOW WHEN I SEE IT IN WRITING,
I am recently diagnosed with bc, and prescribed Femara two weeks ago.
Horrified to read that you attribute most of your health problems to this drug.
My joints have begun to ache already especially my back.
Having re-married last year, your description of Vaginal dryness fills me with horror,bc alone is hard enough to come to terms with!!! I already have high blood pressure!!!! Funny old life ...indeed!!!!!
I feel very sad that you have had to endure so many health problems for such a long time.
Not at all surprised that you are feeling depressed, and overwhelmed. its ok to say how you feel.
I have never had Counselling, but if it makes you feel better, go for it.....Do anything that makes you better.
My sister has made me promise to do one good thing just for me each day....it works...I hope you can do the same.
sending you love and healing
I had bc 7 years ago, 2 operations, radio,chemo, 5 years of tamoxifen, now 18 months of femara. Still have 3 and a half years to go with it. I have endured a LOT in these past 7 years. The more I take this wretched drug the more seems to happen to me? I had terrible joint pains in my feet, which has gone-hurray!! I had pins and needles and numbness in both hands for which I paid Â£3000 to get them operating on to release the carpal tunnel, otherwise I would still be on the waiting list. I have completely lost all desire for sex even if the most handsome man fell at my feet I would feel nothing, nothing at all. My vagina has all but shrivelled up and disappeared, I use replens on a daily basis otherwise I am so sore from dryness, I am getting bladder infections and am on a low dose antibiotic which gives me thrush so am using thrush cream. I am waiting for the result of an ultrasound on my bladder due to atrophy etc. Also I have cataracts, and of course the good old lymphodema in my hand and arm.
And now I have developed high blood pressure, I rang the oncology dept. and asked if this was related to femara to which he replied "on paper it is". GREAT! now I take 2 tablets to reduce my blood pressure, on top of all the other medicines, my doctor says she does not want me to have a stroke, she says she thinks I am remarkable, when I sit and cry in front of her, she trys to make me feel better, but sometimes what with daily life and all the problems it can be so hard to bother sometimes. I have a husband and 2 grown up children who never ask how I am, They are all wrapped up in their own lives and families. My husband has been ok about things but our lives have changed so much since the day I was told I had had bc. I sometimes wonder what is this all about, as parts of me are slowly eroding away. This must sound terribly depressing to anyone reading it and I am sorry if it has depressed you, that is not my intention, but sometimes I feel a bit overwhelmed with it all. I have had counselling, may need some more to lift my spirits again. Funnily enough my non bc mates haven't got a clue whats its like to be in my postion, and they don't want to know. Funny old life................