FEMARA
Comments
-
I was put onto letrozole the generic form of Femara , as soon as I saw the onc after my lumpectomy , before I started rads .( did´nt have chemo .) Each month I would go to the same pharmacia and was usually given a different generic version . All in all , over twelve months , I was given five different generic forms of Femara , these came from five different laboratories , 2 from barcelona ,one from Madrid , and two from different laboratories in France .
I suffererd from so many s/e , my breathing got really bad .....two inhalers twice a day , my chlorestrol went sky high ..................tablets , started having palpitations , a rash and spots appeared on my skin , Urinary infections and dreadfully sore and swollen in that area . Bloated , with diahorrea evrey day . Plus the dreaded hot flushes , , every hour on the dot ..................take one tablet three times a day . That worked to the extent that I only have a hot flush every two hours ! You live your life , and tend to put up .
Then , one day at my pharmacia I was given a box of Femara . Did´nt think anyhting of it , but within 10 days , I noticed a big difference. My breathing was soooo much better , the air of doom and gloom that had been hanging over me lifted , and i felt more like my old self . My genital area began to calm down , my face cleared up , life began to look better . Hot flushes , the same in intervals , but although intense , over quicker . The downside is the joint pain and swollen ankles and fingers .But I can put up with that , I just feel so different .
So whats my problem ?
Spain´s austerity measures mean that only the cheapest drug will be prescribed . So Femara is off and the cheapest generic version is the order of the day .
Just as I find the pill I can cope with , so I´m told I cannot have it . The generic versions don´t do it fore me , maybe one is better than another , but certainly there was not the instant difference that i had with Femara . Also , there´s no continuity , one month this , then the next month that .
Some ladies get on very well with generics , they don´t have a problem . I do . Maybe its the fact that I´m intolerant to several foods , ie lactose , egg white , peanuts , lettuce . No idea , but my life is going to be very difficult now as I have to decide what to do . try and pay ourselves for the femara every month , go back on a cheap generic version paid for by the state , or give up the AL´s altogether .
0 -
Jackwagstaff I'm really sorry to hear that you are having so much trouble with the generic versions of Femara. The Letrozole, wich is the active ingredient has to be the same in all brands it's only the 'other' bits that they add to make the pill their own so to speak that often cause the problems. Is the price very expensive for the 'real' Femara? I don't know what your Dx line is but it might be worthwhile to speak to your doctor about this. If the choice comes down to giving up the AI's altogether, perhaps if you ask what the percentage of possibility of return for you would be.
Love n hugs. Chrissy
0 -
Jackwagstaff,
As a RN, I can say it seems you are 'allergic' to the generic forms of Femara, which could be life-threatening. As you are intolerant to several foods, it's no shock to me.
Ask your doctor to write to the government for an 'exception' and that you MUST take Femara or your life is endangered yet the generics have shown you are ALLERGIC to all of them.
If this doesn't work, consider getting your Femara by ordering from a pharmacy in Canada via email (your can post your prescription) Many people I know in the US get their drugs from Canada and save hundreds of dollars.
Whatever, don't give up!
0 -
Thanks Chrissy and Justa , interesting that you are both from OZ ! It´s exactly right , the active ingredient , ie letrozole has to be identical , but the shell , filler , etc can be different , plus sometin¡mes even the active ingredient can be sourced from different places . Read an awful lot about it lately and it does´nt make me fell very secure about my generic meds . A lot of the stuff is now being sourced from China and other , to my european mind slightly suspect areas . I spoke to my oncologist , but he just seems to take the view that this is what is happening in Spain and that we must all put up with it . I just wish I could . I don´t want this stress . We all have enough to deal with without problems with our meds . Are you all still able to have the "proper " version , or do you get put on the cheaper generic brands ? The UK still has Femara under licence , but Arimidex has just come off causing a lot of problems for the women who find the generic forms , incompatible .
I did look up the cost of buying on-line , but it´s much more expensive than buying direct from the pharmacy in Spain , here it has come down from 169euros to 97 euros , May not sound a lot , but my husband is on a pension , and I don´´t get mine for another 12 months .
0 -
Here in Australia we have a choice to get the 'proper' version of medications or the less expensive generic brands. If you are on government coverage for medications, as far as I know you have to take the less expensive generic ones as you get them free of charge. If you are buying without government help, you can get which ever one you want and just pay for it.
No, we all sure don't need any more stress or illness!
Hopefully you can carry the cost until you get your pension starting to come in. Good luck!
0 -
Justagirl, I'm on a pension with a Government health card and I pay $5.60 p/month for thé 'real' Femara. I have never been offered a generic for any of the cancer meds that I have taken but for all other drugs, antibiotics etc I have a choice but what ever I choose my price is always $5.60.
Jackwagstaff, Justagirls suggestion about trying to get an letter from your doc that you can take to the Gov. Health Dept. there stating that you cannot take the generic due to ill effects but the real Femara is okay. I don't know how these things work in Spain but here, you can under special circumstances get very expensive medication under a licence number from the government that still only costs the normal for any Px. Does that make sense? I'm wondering if you have something like that there.
Good luck with it all.
Love n hugs. Chrissy
0 -
chrissy,
I'm not on a pension and my husband isn't either, but due to his age he has the same health card you have. What I have from the Gov is after buying 50 scripts in the calendar year, all I need on the PBS list are free for the rest of the year. My sleeping pill, Stilnox, isn't on the list and costs me $27 every 14 days.. Tried your suggestion for Melatonin and 7 pills at 2mg each cost me $19 - too expensive for me, even though I thought they worked good but I was groggy in the mornings.
Had a double mastectomy with a lat dorsi flap in March with reconstruction, so needed medication for that.
When I go into the chemist tuesday I will ask them what I have to pay if I want the 'real' Femara.
0 -
Justagirl, I can PM you a web site where you can get the Melatonin for a lot less than that and you only need either 3mg or 5mg. 14mg for sleep was too much and that is why it left you groggy. If you want the site or a bit more info just let me know and I will send. When I say cheaper, 120 pills for $16.95 for the 3mg and one per night is enough.
I also have the safety net ceiling with the meds and once we reach the limit all my meds on the PBS are also free. I reached it in December last year and it rolled over to start again in January.....I laughed when I got the notification that I had reached the ceiling two weeks prior to the new year.
0 -
chrissy,
I only took 2m tab of Melatonin at night. Still would appreciate the website. Does it leave you groggy in the morning?
0 -
wish I could start the safety net at the beginning of the year! Some of my scripts before the safecty net kicks in are $37 and $42 a month! The net limit used to be a dollar amount, now it's number of scripts..
0 -
Justagirl, well there you go....lol.....I didn't realise that the rule had changed from dollars to numbers. When did that happen? The Melatonin doesn't leave me groggy but it did a little for a week or two but not any more that's why I like it so much because it doesn't make me feel drugged in the morning like sleeping meds do.
The site is www.biovea-australia.com and for Melatonin it can take three or four weeks to get to you so don't panic about it being slow, it actually comes from overseas. You, like myself could well find a lot more of the products to use as they are a lot cheaper than the shops which allows me to use some of the ones I was stearing clear of due to price.
Love n hugs. Chrissy
0 -
Chrissy,
You are an angel! Thanks heaps. Deb
0 -
Maybe484: I started taking Femara about 3 weeks after finishing my rads. I've been taking it now since May 4, 2010. I chose to take Calcium & Vitamin D3 on my own since I received no advice from my MO. However, she ordered a complete bone scan after my last visit - which came back "normal for a woman my age (63)," and before my next dr visit, I am to get my Vitamin D levels tested.
My biggest complaint right now is the size of my abdomen. I've always exercised, but my stomach has just become huge!! Could reducing estrogen do this, or is it just part of aging?
0 -
Hi Emegram, your body needs estrogen to function corectly and when the AI's deplete us of it, our bodies increase the amount of fat in the sbdonimal area so it can convert part of that fat to an estrogen. So it becomes a snake chasing its tail, the meds stop the estrogen and the body compensates by storing more fat. So the answer to your question is yes to the reduces estrogen and also yes to the aging as after menopause, the body tends to do the same thing except not to the extent that we have now. Good on you for taking the initiative on the Vit D and Calcium and I hope your levels are good on your next testing.
Love n hugs. Chrissy
0 -
Thank you for your reply, Chrissy! I believe your remarks are exactly right about our bodies storing fat in the abdominal area after menopause & then adding the AI's only increases this fat problem. Very frustrating at times!! But I try to find reasons to be grateful and count my blessings! And I have many!!! God bless!0
-
You said exactly what I´ve thought since I started taking Letrozole / Femara . I just feel that my body is fighting the medication all the way . that as fast as the meds ae trying to deplete every last vestige of oestrogen out of every little nook and cranny , so my body is saying " hey , I´m not having that !" and desparetly laying down as much as it can .
I´ve put on quite a lot of weight since taking the meds , on letrozole my midriff just turned into a huge spare tyre , ( going down now on the Femara ) I seem to be laying down fat as if it were going out of fashion !
I´m fed up of my body fighting itself . Yes I´m grateful , yes I love life , but five years on this , at my age (60) it´s taking away quality time and quality of life .However , I suppose it depends on your dx , mine was good cos it was caught so early , and for that I thank God .
0 -
Jackwagstaff Novartis is the drug co that makes femara. On there web page they have info about supplying the drug for people who cant get the drug. Plus a phone number to talk to them directly. I would try that and maybe you can get the drug for free.
0 -
Jack I'm on it until it stops working for me, but I hear what you are saying re the spare tyre around the middle. The rest of me has a bit of ectra weight but I had that before the Dx but the middle bit? that has decided to settle in and is definitely not moving no matter what I do. I think I'll just change the style of my clothes and accommodate it!
0 -
I took the brand name Femara for 3 1/2 yrs. My health plan switched me to generic lotrazole a few months ago. After seeing this forum, I realized that I am getting alot more hot flashes than before! Could it be the generic lotrazole????
0 -
ihopeg, if the changes have come since changing from Femara to Generic Letrozole I would say that you could blame the meds. Hopefully, as your body gets used to the Generic, it settles a bit for you and goes back to what you were having or less.
0 -
Anyone have recommendations for vitamins or other supplements to take or not to take while taking Femara/letrozole? My doctor didn't say anything. I'm going for a bone density this Friday...
0 -
Hi NewatThis, have you ever had your Vit D levels checked? If not, ask your doc to test them as it is important to know what they are. I take Vit D, Omega 3, Magnesium for my bone health and a lot of others take Glucosamin, Condroiton and Calcium. I also have arthritis and these help with my joint health as well. For the natural ani-inflamatory, I use Boswellia Serrata and find that fabulous.
Good luck!
Love n hugs. Chrissy
0 -
My brain has been in overdrive recently.
Why am I taking Femara still if I had a double mastectomy in March and when they did the Sentinel Node Biopsy last year (with my lumpectomy) it was negative. I do realize my tumor was a Grade 3 and classed as aggressive and invasiveand I am estrogen and progesterone positive, but I don't have any breast tissue left?
I would appreciate your input. I am just having a rough time with the hot flashes, joint pains and not sleeping well.
0 -
Estrogen is produced elsewhere in the body not just the breasts.
0 -
Debbie, the reason you are on Femara after doing all the neccessary treatment is to try and ensure that the cancer does not return. Even though your nodes were negative, that is not the only way that cancer can spread.......it also moves through the blood stream. We think that the chemo is going to kill off each and every loose or stray cancer cell but this is not always the case so this is why we are given what they call adjuvent therapy to give you the best chance possible of staying cancer free. It is sometimes difficult to put up with the SE's of the drugs but you actualy have to make a choice.........possible return of BC or a drug that makes you feel aged and achy?
Do you take any supps to help with the SE's at all? Also, you do have the ability to change to a different AI if you think a change will be better. From my experience, I had problems on Arimidex but on the Femara I have virtually nothing. There have been a lot of women that have had problems with Femara, changed to Arimnidex and are virtually SE free. There are always options.
Love n hugs. Chrissy
0 -
Thanks Chrissyb. Just curious, why an anti-inflammatory? (just curious because I'm having nasty chest pain/heartburn/ and wondered if it was from the meds). I must be getting good calcium from all the Tums I'm taking!
0 -
Newatthis, I take the anti-inflamatory because most joint pain comes because the tissue is irritated and inflamed and the anti-inflamatory settles the irritation and in doing that, relieves the pain somewhat. The pain that you are having needs to be checked out by your doc, any chest pain needs to be checked. Your heartburn is more than likely from you meds but rather than eating Tums continuously, there are other tabs available to settle the acid that is causing it. Again, this is something you need to tell your doc. Unchecked, an excess of stomach acid can cause other problems and scar your esophagus which is something you don't want to do.
A glass of milk, a small tub of yoghurt and 30g of cheese per day is enough calcium but if your body does not absorb it properly, having more will not make any difference. Hope this helps.
Love n hugs. Chrissy
0 -
amoccia, I thought thereason to decrease the estrogren and progesterone was to quit any breast cancer cells from thriving and growing. If I don't have any breast cancer cells, whats the purpose?
chrissyb; you are a wealth of knowledge and common sense. You are so right and I agree with you. As a nurse I have always believed in doing all one can to fight disease and after all I've done, including a double mastectomy and radiaiton, I would be a fool to not keep taking it.
Yesterday was a really bad day for me depression wise. I got up at 6 and went back to bed at 7 and didn't get up until 11. Just no up and go in me. Too much has been going on at home and I think with the hot flashes, not sleeping and aches I am just worn out and looking for answers. My almost 18 year old son is driving me nuts. My 77 yo dear husband is getting more stuborn and set in his ways every days and less tolerant of our son. Our house has required many repairs as I let everything go this last 1 1/2 years with dealing with cancer so in the last two weeks I have had the tree chopper guys for a day (we live on 8 acres in Doonan, Queensland), the paddock slasher guy, I've mended fences to keep the horses in, the paddock tidy-up man, the plumber to the house twice, carpenter to house, along with shower tiler, shower screen guy, window washer and painter to touch up last years paint to outside of house.
I like my privacy and peace and quiet. This has been too much for me to be at the center of. My dh and I were looking forward to repainting the inside of the house and redoing the carpet and screens in a few months but now I don't have the energy or the money for it. Guess I'm just bummed out. Today is the last repair man for this week and he will just be back once next week.
I want to sit out on my porch, in the sun, wrapped up, sip at a coffee and read my book.
I don't know where you get your calmness from Chrissy but please teach me!
Thanks Chrissy -
Debbie
0 -
I had DCIS/rads. I first met my onc during rads then she scheduled an appt. a month after I finished rads; she wanted me to have some recovery time before starting AIs. Since that was almost Christmas, I got her okay to start on Jan. 1. Started with generic Arimidex and tried for 4 mos; but in addition to the hot flashes and terrible joint pain, I just couldn't sleep; so I tried generic Aromasin. It crippled my hands (tendonitis), and I quit after six weeks. I was off that for three weeks before starting generic Femera; again, she wanted me to have some recovery time. I've only been generic Femera for a week; I don't have the hot flashes just joint pain, so it's the least awful of the three for me. Instead of keeping me awake, I'm tired all the time; I can sleep 10 hours and the next night fall asleep sitting up in front of the TV at 9 p.m. I take 2000 of D3 and 600 mg of calcium + 2 glasses of milk/day; I can't take a lot of calcium because I had a kidney stone a few years ago. My onc said that the bone density degradation is very slow; I had a test after starting AIs and will have another in a year. (There's no significant radiation with that; the tester stayed in the room.)
0 -
My surgeon told me that there is breast tissue beyond what we call our breasts; it extends under our arms and below the breastbone. My rad onc said he has seen cancer recur on the mastectomy scar in women who didn't have treatment beyond mastectomy.
0
