FEMARA
Comments
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Hi Trisha, I am on the mid north coast of NSW, at Port Macquarie, a beautiful town with lovely beaches, so unfortunately Melbourne is a little far away for me to attend your get together. Thanks for the invite though.
The reason they are now considering taking me off Femara onto Tamoxifen is that my bone density has plummeted over the last 7 years on Femara, plus having the ovaries out at the same time didn't help either.
Lassie-
The reason they are keeping me on it as they say I need to take something for at least 10 years, as I had a positive node, didn't do chemo and NOW think that I may be at higher risk of recurrence.
They also think that maybe I am BRACA 2, because of family history of father, brother and uncle all with prostrate cancer, and mother with lymphoma, plus 2 great aunts with breast cancer. Apparently breast cancer and prostrate cancer are genetically related and the BRACA 2 gene is involved.
Lassie, did you have positive nodes??
regards Ched
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Grandma,
Thanks for the encouragement to know that the weight gained can be lost....
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Aussie - yes, I did have a positive node (1 of 23 or so). Some differences are that I had a mastectomy, chemo, radiation and Herceptin before the five years of Femara, possibly because this was my second run with this nonsense. Also, I was tested for the known BRAC genes and was found negative. Those differences may account for your doctor's different decision.0 -
My MO is moving me back to the Arimidex and we will monitor my Lipid Profile every 3 months. Ok for me to put the fish oil and garlic back into my supplements.
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Hi Ched
Port Macquarie is a beautiful place, I've been there a few times
I'm sorry to hear your bone density has dropped so dramatically. In all this, one thing I have going for me is my bone density. My onc said to me (he has a very old fashioned British type accent) "You are to be congratulated on your bone density, my dear lady" lol. I have dropped almost 10% in the last three years, but that still takes me to the very top of the above average chart. I would need to lose at least 50% more to get to average lol. I keep telling everyone most of my weight is in my bones, no-one believes me.
Trish
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Enjoyeverymoment - I'd definitely check the pricing on the generic femara, as well as your insurance coverage. My co-pay, for example, is $10 month.
I did have my usual, seasonal hair shedding along with some unexpected dryness when I first started on femara. That seems to have passed. I am taking biotin for my hair, which may be helping. Other than that, I don't experience any SEs for very long. Compared to chemo or radiation this is easy for me. I wish it were as easy for everyone!
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FYI. I get my Letrozole (generic Femara) through my cancer center for $20.00 a month. Been that same price for 3-1/2 years.
Vickie
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I pay $15 a month for generic Femara. So far so good.
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I'm glad you're doing o.k. with it, Robin, as I know you were uncertain about the whole thing. I hope it continues thus and I hope it's very efficacious for you.
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aussie- I had 2 positive nodes, breast cancer runs in my family... Grandma (maternal), maternal aunt. Mother and now me. Plus my dad had prostate cancer. I had the genetic testing done. I was negative for bothBRCA1 and BRCA2. I didn't have chemo or radiation and my oncologist is saying 5 years on letrozole. I did try tamoxifen, but it tried to kill me so I'm not doing that one again!!
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I started Femara in mid January. I had hip pain from degenerative disease before but it has gotten a lot worse. Now when I get out of the car after an hour or less of driving I can barely walk. It does loosen up in a relatively short time. No other side effects. Love, Jean
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Is anyone taking ibuprofen for joint pain? Does it help? Love, Jean
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I take 2 Aleve in AM and PM along with chodroitin coQ10, glucosamine and calcium/D3. Seems to help.
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Thanks for the Aleve tip. May try it as I will be with family tomorrow and hope to enjoy the day. I intend to call my chemo doc on Monday to see if she has any other suggestions. Also started doing some exercises. Love, Jean
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Jean, I also have a hip problem and stiffen after sitting in a car. Amazingly, I also run for exercise and it doesn't seem to affect that once moving! I do take ibuprofen once a day for a couple of days to settle it down if painful. Exercises definately helps!
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I exercise quite a bit and quite regularly. I was prone to stiffness before Femara and haven't seen it get any worse. If you do exercise, then if you stiffen up you can always tell yourself it's your workout rather than blaming it on a drug that you really need to take. Sometimes just re-framing the issue makes it easier to accept.
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I have taken ibuprofen a few times and along with 20 min of Zumba and 10 of Taichi in the morning for the last few days it seems a bit better. I will be 72 at the end of the month so I need to be grateful that I am as well as I am. Thanks for the encouragement ladies. Love, Jean
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Jean, Zumba sounds great! You go girl
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I can feel myself slowly getting stronger. Yep, Ibuprofen and Zumba! Should be part of our treatment regimen. Teehee! Love, Jean
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I have a question I am hoping someone can answer....... I was on Tamoxifen for 15 months before switching to Femara last Sept. I was on Femara for 6.5 months and I had a terrible time on it - brain fog, joint pain, muscular pain, constipation, terrible fatigue, vaginal bleeding after sex, and the clincher - bad hair loss at the 4 month mark. I am menopausal after an oophorectomy. My onc ordered a 2 week wash-out and I have just restarted a half dose of Tamoxifen which will ramp up to a full dose within the month. My onc and I both agreed that quality of life wins out over the marginally improved prognosis as I have 2 young kids I need to be active for. Although much better (no brain fog or constipation), I am still incredibly stiff. My neck, hips, knees and feet are very stiff and sore. Does anyone know how long it takes for the effects of Femara to abate when you return to Tamoxifen (if at all)? My onc has freaked me out a little by saying that if I'm still feeling this level of pain after a month of stopping, I will need a bone scan to rule out bone mets. Anyone else had a similar experience?
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Jubby, I took Femara for 5 days and it took the better part of 3 weeks for the symptoms to go away. My doctor didn't want me starting back on the Arimidex till the 2 weeks were up from the Femara. Have you tried Arimidex? I had virtually no side effects I could feel, it just messed with my cholesterol. Now we are just gong to check my cholesterol every 3 months to see what's happening.0 -
Redhead and Jubby,
I was on Arimidex and Aromison first and they just about killed me! I had such arthritic pain in my wrists and thumbs that it was debilitating! I was in tears it was so bad, swearing I couldn't live this way for 5 years. I changed MO and she said that you should never start any AI in cold weather. She put me on Femara 6 weeks ago and I have no problems yet. My hands are better, but may never be pain or stiffness free. I take CoQ10, coral calcium, liquid D3, liquid B vitamins, Aleve and Glucosamine. I think that helps. I take a statin for cholesterol already so hopefully that won't effect it. I hear you can get thinning/loss of hair. Hope that doesn't happen either. I just notice my hair is drier and I am using more moisturizing products to keep that at bay. Having ILC, my MO thinks Femara is a better AI for that. Hope you all can get the results needed without too much trouble. This just proves that there is not one pill that fits all. Robin
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Hello all, I just wanted to remind everyone who is taking Femara (or any AI) and a statin that both of these medications can cause anthralgia. I used to take all my medications in the morning and when I started taking my Femara in the morning and statin and night, I had a remarkable reduction in joint pain. The stiffness is still there when I first get up, but the pain is gone, gone, gone. May not work for all, but just wanted to put that out there as it is a simple change with no risk. I got this idea from this thread.
MsP
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Yes, I got that info on here as well and when I started Femara I take it in the AM and Statin PM. I think that is why I am doing better as well. Thanks for bringing that up again for any newbies. Stiffness when I wake up as well, but doesn't last once I get my motor going!
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Robin, I think increased dryness and shedding is common in the early days of using any of the AIs but not out and out alopecia. I think alopecia is much more likely with arimidex. The effect would probably not be as noticeable once your body adjusts to it.
I really stepped up my conditioning and started taking biotin and all of that's helped tremendously - my hair is back to normal for this time of the year.
I think that exercise/activity makes a huge difference in whether one stiffens up or not, no matter which AI one is on. At least if I'm sore after a workout I can ascribe the stiffness to the workout rather than the femara
I do attend a yoga for cancer class once or twice a week as well (no yoga experience needed) and that works out a lot of the kinks. Some people find tai chi helpful as well. I know I sound like a broken record but Femara is really very powerful and effective for many of us. I think I'd put up with any number of SEs in order to continue getting the results I've been seeing. I hope it works out equally well for all of us on this thread.
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With my onc's blessing, I stopped femara on valentines day. I walk 5 miles a day at least, and I am STILL hurting! I dont have to start anything until may 4 when i see him. I started with arimidex, and 9 mos of it, i was a hurtin ball of a mess. Tamox, Same thing, but only for 6 mos. femara ever since, and i cannot believe how much my feet and legs, hips hurt. i do get plenty of exercise, still not up to what i was before dx and tx, but a little better every day. And, also i had been having a hard time breathing, and they said it was my smoking. I mostly hold them, and rarely inhale... guess what? by the first day of spring, i noticed i could breathe again! and its really nice. but i dont think my other pains are going away. So now i have to figure out whether i want to get worse by taking the pills, or just go ahead and take my chances with dying. because i was strong and never even hurt even when i had broken ribs and broken pelvis, from riding horses and car accident. stupid. i might be one who just cant deal with the pills.
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Tomboy,
I hear you loud and clear about the possibility of not tolerating ANY of the meds! I am holding my breath with the Femara because I had such a horrible experience with the other AIs. I think any day the other shoe is going to drop and I am right back where I started. But since my MO started me on it in warm weather, I think that has helped. The med peaks at 3-6 months and you need to have warm weather to get you through that time frame. Just like arthritis hurts more in the cold, damp months, the AIs are effected the same way. How come my first MO didn't know this?? Well, the best of luck to both of us. Robin
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MsPharoah and Robin, I found the same thing with my Femara and statin. I had terrible muscle pain. Splitting them up so I take the statin in the morning and Femara at night reduced my pain significantly.
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I know that splitting the statin and AI may not help everyone as we are all so different. When I see my MO next, I will mention it to him as I don't think that many doctors are aware that this is helpful for some/many. Of course, they have to admit that these drugs have side effects first, right? Compliance to this treatment is so important IMO so figuring out how to attain a high QOL while on this drug is my top priority. So far, so good. I had a DEXA scan in 2013 and I have requested a follow up this year, but no word yet from the Doctor,
Quick survey for those on AI more than 2 years....how frequently do you get DEXA to assess bone density?
Thanks, MsP
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I've been having DEXAs every other year due to minor osteopenia. I am told that I'll continue on the same schedule now that I'm on letrozole. From what I've heard, that's pretty standard.
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