FEMARA
Comments
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Azure, one rounded scoop per shake is enough but you can add more if you want but it's not necessary. It's good that your mom has had a food fest even though to you what she ate sounded weird.............eating anything is good and will encourage her to want other things. I've not heard of swollen hands as an se of Femara but anything is possible............having said that, I would just watch it and if it gets worse mention it to her doc as there are other causes of swollen hands. Are her feet affected as well? or just the hands?
I;m glad the pillows worked for her and she is more comfortable to sleep.
Love n hugs. Chrissy
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Yorkimom what was your oncotype score? Mine was 14 and like you chemo was contraindicated. Did you get any hassle from your insurance company paying for the test since you (like me) had positive nodes?
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Interesting....I was told no Oncotype test for me, because I had positive nodes I had to have chemo. I went to the Oncotype website....it said the test was for only node negative. So 6 months of chemo, rads and now femara for me.
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I had nodes negative and my Onco score was 35. The Drs. were very surprised. Maybe they give Zometa because of no chemo. Extra protection for those gals?
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dunno - I never got Zometa (what is it???). My first surgeon was going to give me rads and chemo. Because she was also pushing me hard to get a bi-lateral, I decided to go to the Seattle Cancer Care Alliance. They immediately said no rads, and then said I was "borderline" for chemo - suggested that I do the Oncotype test. It came back quite low, so no chemo. The insurance originally said they'd pay, but then (after the test was completed) said they wouldn't because I had positive nodes. The oncotype results were given to us with recommendations for both positive and negative nodes. My score was so low that even though I had positive nodes, chemo was not recommended. We're still fighting with the insurance company, you'd think that because the test saved them like $50,000 in chemo that they'd be willing to pay, but noooooooooo
.However, no rads and no chemo - I have no choice about the hormone therapy. I have to make it work. Tamoxifen didn't, but so far, the letrozole is doable. I ache, and am certainly more tired than I'd like to be, but I think it'll be OK. (Well, hope so, anyway!!!) I'm adding in every kind of natural supplement I can come up with, to offset the achiness - and have moved to a gluten free diet. Glucosamine, Chondroitin, Curcumin, Ginger.... I'll probably add in yucca next - I read that it's an anti-inflammatory as well. I already eat it, but I think the supplements will help out on days that it's not part of my diet.
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Got the juice fortisipJuce --bad spelling yup but it's on it's way :-) Boost breeze for yoghurts oh no something else caught my eye.0
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I sure am glad to read that some of us here are also tired. Never had a problem until Letrozole. The light just went on reading some posts here that maybe it's the drug. It also causes more or I should say worse pain than when I was on Femara.
I think I"m going to start Curcumin again. Thought it gave me heartburn so I went off. It's worth another shot. Has anyone seen some good results taking this supplement?
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I swear by curcumin. I take 4 capsules a day. (2 morning, 2 evening) I don't know if it boosts my energy at all, but there is a definite impact (for me) on my aches. I was thinking the SE's were dying down, as I wasn't aching as much - then I ran out of curcumin - all the aches and pains were still lurking, not to say that they are gone on curcumin - just improved enough that I don't feel quite as crotchety.
As for the tired - I am tired on letrozole, but so much less than I was on tamoxifen!!
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Azure.................has anyone thought of Lymphedema................it might be worth checking out with a specialist.................I have it in my right arm, and you can pretty much swell anywhere when you have it.............It would be something to think about.............good luck
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I definitely feel worse all around when I forget my curcumin. I take 6000 mg per day when I'm on top of things. Don't freak out, I know that's a lot -- it's the maximum therapeutic dose, and the dose recommended for advanced BC. You'll get benefit from a lower dose, I'm sure.
One very nice side benefit I notice from taking curcumin along with Femara is that it overrides the constipation Femara can cause, and it does it without going overboard, if you know what I mean. Anytime I forget my curcumin, it doesn't take long for the wheels to stop moving. As soon as I take some, everything is jussssst fiiiiine.
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Hi all,
I just started letrozole on New Years's Day, so far no side effects but reading all your posts has me nervous! I'm going to hope for the best and plan for the worst. I'm wondering if it would behoove me to start taking curcumin or glucosamine ahead of time, get ahead of the s/e. OTOH, I don't want to take more pills for s/e I may not get. I hear the joint pain starts at about 3 months, has that been true for you?
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Well, ladies... my onc just took me off Femara this morning. On to Faslodex + Xgeva while waiting for Afinitor to arrive. I'll peek in here now and then, but for now I guess I'm shuffling off to the Faslodex forum.
Thanks for all your helpful insights and support while I was on Femara these past 15 months. You're all beautiful and amazing creatures.
See you all around the boards!
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Femara gave me the "trigger thumb"...............talk about annoying.......especially when texting..............thanks Femara
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cfdr - for me the se's started right away - only 2 weeks in. I'm at 2 months now, so am hoping they don't get worse
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Hi cdfr, I have joint pain but I had arthritis long before I had BC and needed to take these drugs so I put the jont pain down to that as it hasn't increased while taking Femara. The biggest SE I have is fatigue but by taking the little pill at night instead of the morning I seem to have gotten rid of most of that too. My suggestion is don't go looking for se's as they may never turn up........just pop your pill and live a normal life.
Lulu, good luck with your new regime! Looking forward to good reports.
Love n hugs. Chrissy
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Does anyone have a remedy for "trigger thumb"...................................
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Ducky, I can't help you on that one but perhaps a call to a PT might give you some ideas. Hope you can get some help as I know it can be down right uncomfortable.
Love n hugs. Chrissy
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i had bad trigger thumb after beginning femara. i went to see the reumatologist (sp?) at m d anderson, and she gave me a cortisone shot in the ball of each thumb, and it went away. my thumbs actually stuck before the shots, and i'd have to unbend them w/other hand! sadly, altho they're not trigger now, the arthritis i had pre-femara has made all of my fingers achey.
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New to this thread.... On femera about 4 months & have lots of joint pain all over. I also get eligard(lupron) injections evert three months. Next dose in February. I'm not sure which one or if both are causing me all this pain. I see oncologist next month and plan on discussing this. I was wondering if I should try some OTC meds or try switching. Already tried aromasin but changed because onc thought it caused the severe vertigo I got after about 12 days starting therapy.(also confused because last eligard caused slight vertigo after about 10 days)
So now I'm not sure which caused the vertigo.
Anyway... Is there a recommendation from you girls of which OTC Med I should try first?0 -
Hi tenaj, the general consensus seems to be all the ones that are anti inflamatory in nature such as,
Curcumin (Tumeric), Boswellia, fish oil (omega 3), glucosamine, condroiton.
Hope this gives you something to work with. With all these things, you need to give it time to build in your system, it's not going to relieve over night but you should start to feel some effect in two or three weeks. I know that sounds like forever but believe me it really is not that long. Good luck!
Love n hugs. Chrissy
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Good morning Chrissy, thanks for te info. Is something I should check with the oncologist first? Is there on or all I should try first?
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Tenag all of them are okay with other meds but if you want to check first that's okay too. I take all of them as I can't take the prescribed ones and I have osteo arthritis in just about every joint and the combination keeps me very comfortable. You may find that if you start taking them all at once you may have some digestive and bowel issues so my suggestion is start with one and slowly add the others one at a time a few days apart. I sure hope they work for you. Good luck !
Love n hugs. Chrissy0 -
y'know, i try NOT to read about SEs with the meds (Femara) we're on, because I believe if I read them, then I'll GET them...
But, dang, I sought out this thread because that stuff makes me feel horrible. Every joint and muscle in my body hurts. I feel like I'm a hundred years old. Moving is so painful. BUT I know exercise is the key to managing these SE's.
Just wanted to vent that.
michele
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Ditto..... Going to be better with exercising after my exchange on 1/17. Thinking about PT this time to get me started. :-)
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I've been on letrozole for 9 days now, and can hardly breathe. I have bad allergies/asthma but they are generally controlled by medication. Latley I've been having at least one horrid coughing fit every day. If I take a deep breath I cough uncontrollably. And by deep breath, I mean the kind you use when you are going to yawn or sneeze or raise your voice to say something to someone in another room. I am also so short of breath that I even get short of breathing walking DOWNhill. When I measure my lung capacity with my pocket peak flow meter, it is usually 400-450, now it's 200-250. I've never measured it below 350, and that's with really bad bronchitis.
Besides the fact that this all started after starting letrozole, I also suspect pneumonitis, which can occur up to 6 months after stopping radiation (Mine ended in September) and can also be caused by cytoxan, which I just finished last month.
Saturday night I came close to going to the ER. Called my onc first thing this morning. Her take: Your lungs sounded fine on 12/30 so it's probably just an asthma flare-up. Call your primary. Not very happy with that response! My lungs sounded fine 10 days ago...BEFORE I started having symptoms. I have an appt with my primary tomorrow, will be interested to see what she finds out.
Anyone else had breathing difficulties on letrozole? Did they ever go away?
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Get off of the drug as soon as possible and see if you improve. My Osteo drugs did the same to me. I was off of them in a flash and felt better. Every body reacts differently to certain drugs.
I have other SE's since Letrozole.
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I have been on Femara for 9 months now and the SEs started 3 months ago. I have pain on my fingers and trigger left forefinger. I have read a blog on femara and one lady mentioned about AVEMA, so I ordered it on amazon and been taking it for the past three weeks. The pain subsided and is manageable or tolerable at this point. It is powdered and you mix it with water or juice. So maybe something you might consider taking.
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I had severe shortness of breath after taking letrozole. I gave almost two months to see if my body will get used to the drug. After I talked to my onc he asked me to stop taking letrozole and I am to see him three weaks after which is this comming Wed. I am praying that he will ask me to go back on tomax and not on letrozole.
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Went to PCP today, got a chest x-ray: I have upper left lobe pneumonia. No idea if there is/was any relation to any treatments, other than just general immune sysstem weakness after being on chemo. Great, finally done with one challenge and on to the next!
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Last week my onc allowed me to go off of Femara for two months to see if my side effects improve. I have been taking it since May of 2010, about 1 yr. 7 months. I have had trigger thumbs, hip, knee and low back pain, and my jaw doesn't always want to open all the way. My worst part of the day is when I arise in the mornings. Even the bottoms of my feet hurt!! My nights are pretty miserable, also. Then the longer the day goes, the better I start to feel. I did chemo and radiation - so I asked my onc how much more taking Femara will increase my chances of survival. She said about 3 to 4%. Now I am asking myself, "Am I going to continue taking this drug for another 3 yrs+ and endure the joint pain that I have been having?" It is a tough decision, and I want to see how much better, if any, I feel after two months off the drug before I make up my mind to continue taking it. I would like to hear from some of you who also are dealing with this dilema.
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