FEMARA
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Trailrose... I started Fermara (letrizole) 3 weeks after I finished chemo (Feb 26th). I had my reconstruction on May 13th and was not required to stop my fermara. How are you doing with the fermara after 2 years. I am achy with joint pain after sitting or laying down but only few minutes or so.... wondered if it gets worse as you take it.
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Trailrose Sister -
There are three aromatase inhibitors - Femara is one. Do you know if she has tried the others? One gave me grief, one did not.
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thinking positive, thanks for responding that you didn't stop taking Femara for your reconstruction. That helps. After almost 2 years of Femara I still have issues with all over joint pain, especially in my fingers but I take curcumin and boswellia...this helps my joint pain immensely. When I stop taking these supplements, my joint pain increases significantly.
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Hi ladies.....it's been a while since I checked in but wanted to give you all an update as to my Letrazole experience. First of all I am now 69yrs and have been on L for almost three and a half years. In the beginning I lost a lot of hair. It has almost subsided now but has left me with much less hair than I started with. I next went through a year of nausea in which I lost about thirty pounds. I started to take gravol suppositories and could finally keep food down when the gravol kicked in. I also have stiff joints and it is very hard to get out of bed in the mornings as well getting out of the car. I am now going through a stage where I'm hungry all the time, and as a result, I have gained more than twenty pounds.....yikes!!!!!.....
Having said all of this, I will persevere for the other one and a half years. If by that time my MO tells me to stay on it, I will as I have more good days over bad ones.
The thing about exercise is that I know it helps tremendously but it's a catch twenty two situation.....the L leaves me with a lack of energy most days, along with being 69 of course.....lol.
My recommendation to those having severe s/e is to discuss it with your MO and perhaps a break or a change of Al would help.
I wish everyone all the best getting through this.
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Hi Scottie! Been a while since we last talked. Sorry to hear about your Letrozole experience. I only have to take the drug for another 8 months and then I think I'm finished. Been a long haul but once that has gone by fast. I'm still exercising which helps with the joint pains - hardly notice that now. Besides, I took up a boot camp along with nutrition and lost 20 lbs. That has helped me a lot. Hope all is well with you otherwise!
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Hi Jilly59- Thank you for your reply! She was offered Tamoxifen but is afraid of it due to blood clot risks. When she was first diagnosed she did go on Tamoxifen and handled it quite well. I'm going to ask her if she asked her MO about other options. She does go to her MO every 6 months so she'll be seeing her soon. As the big sister I want to help her as much as I can! Even though I was BRCA 1 negative just watching her go through all the treatments and mental anguish is what led me to having a BMX for DCIS. Our family history is bad! My heart goes out to all of you.
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I will have been off femara for 2 weeks this Monday at my chemo docs recommendation to see if it is causing my severe joint pain and stiffness in knee and hip, also cramping. So far there is no change so I probably will go back on it next week after call ing her. I guess it's just old age arthritis. Boohoo, I am 72. Love, Jean
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TrailRose - we wish her the best. It's NICE that she has a big sister like you watching over her...she's very lucky. My sister RAN.
Hi Jean!
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I just started letrezole a week ago and am starting to have elevated body temps. Just a feeling of being too hot on a breezy 70 degree night. Then half way through the night I wake up too hot with just a sheet on. Can't get back to sleep after that. Think I will try switching to evening like a lot of other women suggest.
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Trailrose, if her doctors are ok with tamoxifen, maybe your sister would feel more comfortable with it if she also took low-dose aspirin to reduce stroke risk. Has she tried all three aromatase inhibitors? Women can react differently to each. (Femara/letrozole, Arimadex/anastrozole, Aromasin/exemestane) AIs are a somewhat more aggressive treatment than tamoxifen, which seems appropriate for your sister's case, young and stage iii. But quality of life is part of the discussion.
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I agree with KerryLamb that eating something mild with the pill quells the quesiness......
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Renee, I pay $50 for a 30 day script with my insurance. I can't believe insurers won't pay for anti-cancer drugs.......
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ShetlandPony- Thank you for your reply! I will let my sister know this information. She was absolutely miserable on Femara and I know she wants to have some quality of life and energy especially since she has three children aged 7, 5 1/2, and 4!
Jilly59-Thank you! My sister and I both look in the mirror and think it's crazy that we both had BMX and just stare at our scars. She's 38 and I'm 44. Your sister is a runner? How awesome, so am I!
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peace strength... I was off Femara two weeks prior to DIEP reconstruction, then started back after each surgery.
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Artistatheart, I take my Letrezole at night, have a ceiling fan on high and a small fan pointing at me during the night and I am still hot. The doctor tells me it is because I am a diabetic, even though it is well under control, I still run on the hot side. When I go outside I immediately start sweating and within 5 minutes my hair is drenched even with my hat on. It doesn't matter how much water or tea I drink or how cold my house is, I am hot. My fan at work is always on, my car air is always on and sometimes I stand with the refrigerator door open just to have some relief. My poor husband is always cold, so we compromise. He goes out and sits on the deck and I stay inside of my nice air conditioned house and sit in front of the fan. We are trying to decide where to go on vacation. The south is to hot for me and the north is to cold for him!!!! Can I go with you to the arctic??? Will the hotness ever stop???
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BosumBlues, I can't believe your MO said "never heard of that". What a stupid unhelpful comment. I have the same problems with sweating and heat intolerance no matter how cold it is. My partner says when I'm having a flush I get really hot and sweaty to touch. I hate this side effect.
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artistathea… I suggest you check with your MO to see if there is a cheaper place to get your med. I know of some gals who have had to pay up to $1500. a month, however, I get it through my cancer center for $20.00 a month. Have been on it since Nov. 2011, so only about 15 months to go., yippee
Vickie
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I've been on it since March. If I was hot before now I feel like I'm melting from the inside out. I have eaten an embarrassing number of watermelons since May. I will be very sad once summer is over! I am definitely tired and don't sleep very well.
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On the topic of increased LDL cholestrol with femara...i am looking for any studies/info that says WHY this happens? What is happening in the metabolism to cause this? Seems like the starting point to try to help my body, its up substantially in just three months and no way am i going on statins! And, is this a perm effect?
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That's a good question, cbaird. I think the increased LDL is just from estrogen deprivation, and all we can do is eat right and exercise, no? My internist told me they don't care if my cholesterol is high for the first year after chemo, because cholesterol is needed for healing. I'm not sure why.
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My cholesterol has not been checked yet either. I finished chemo in Feb and have been on Letrizole (fermara) since then. I suppose when I go to my internist for my annual she could always send me to have it checked.
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I have been on Femara since March (I think) after having incredibly inch feet on arimidex. I have hot flashes and joint pain. Both are mitigated with magnesium. Might be worth a try
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I'm going to try the Jim humble MMS protocol and see how that goes for me. Apparently do your research and please anyone with comments let me know. I have people really pushing me to do this and I'm scared but equally fearing chemotherapy . Switched makers of letrozole and I feel like I'm 90 when I get up from a hair I'm okay if I stay standing but forget the rest. I'm single and haven't been intimate with a man in over 11 years so no desire for it anyway and way to sore die in the nether regions to even think about it. But lonely for the cuddles .
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Friends - I need some advice. My fingers and hands are swollen numb and tingling. Is this neuropathy? I'm pretty sure it is the Femara. I'm taking effexor, 250 mg magnesium and glucosamine chrondroitin. What supplements have you found to work to help w this? BTW I started biotin about a year ago and my hair is much thicker and shinier (for an Gma!)
My onc said the joints issues would improve. I sure hope so. Counting down the days to five years.
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It does seem the joint issues get better, and walking helps if done regularly, in my experience. I think it makes sense to have side effects during the body's adjustment to lower estrogen, almost like a second, deeper menopause, and then for some stability to set in. Again, that has been my experience. I started in April and worried I would not be able to continue on it, but now it is fine.
Swollen, tingly hands sound concerning. Do you have arthritis or any autoimmune problems? Maybe you could have an ANA done. Cancer can trigger autoimmunity in a few people, because the immune system is revved to fight it. Just a thought.
Could you have something else, like Lyme disease for instance?
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WS - All those things are a possibility
. I guess I might be more concerned if I didn't find this on a doctor site. Femara (letrozole) is a non-steroidal aromatase inhibitor (lowers estrogen production) used to treat breast cancer in postmenopausal women. It is often given to women who have been taking tamoxifen (Nolvadex, Soltamox) for 5 years. Femara is available in generic form. Common side effects of Femara include hot flashes, hair loss, joint/bone/muscle pain, tiredness, unusual sweating or night sweats, nausea, diarrhea, dizziness, trouble sleeping, drowsiness, weight gain, weakness, flushing (warmth, redness, or tingly feeling), headache, constipation, numbness/tingling/weakness/stiffness in your hand or fingers, or pain in your hand that spreads to your arm, wrist, forearm, or shoulder.
I started in April too and it does seem that the joint issue in my knees and legs is improving. Oh well, I guess I'll keep on keeping on. Have a great day!
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The tingly feelings could be caused by the swelling (I have had this). It is the swelling that sounds concerning to me and it is not mentioned as a side effect anywhere that I have seen. Have you shown an MD? Is it red and inflamed and swollen or more fluid-filled?
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Many AIs contribute to carpal tunnel syndrome which can present as numbness/tingling in the fingers.
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Snowgirl, you take care....personally I wouldn't do it.....
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I was afraid of carpal tunnel. I did tell my onc about it last week and she thought it should improve over time. To compound things I worked in my grown kids yard in another part of the country unaware of what poison sumac looked like. Much of my body was covered in tiny little blister especially my gloveless weed pulling hands. Thank goodness that is almost gone but my hand are now itchy and peeling in some spots.
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