FEMARA
Comments
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Shari i had exactly those flushes and chills but after first six months did start to ease a lot
I have been off letrozole for a month and realise it is largely responsible for my low feelings, feeling ancient and decrepid, fatigue, even some of the trauma stuff it seems to trigger as feel much lighter now and slowly getting more and better sleep......
I find it strange it is one dose fits all as we are all different weights shapes and sizes.....0 -
Shari, the hot flashes are very normal but awful.......sorry. A lot of girls get a prescription for Effexor which is an anti depressant that seems to work for some people in controlling the flushed and makes life with Femara a little easier.
Love n hugs. Chrissy0 -
I seem to mostly get hot flashes at night when I go to bed. My DH says that he is making me hot..wink wink...then we laugh and go to sleep..
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I'm almost 66 so may account for the fact that I never got the flashes, but I do periodically get cold chills, fatigue, yes, extreme anxiety now being dealt with thanks to anti-anxiety meds. I have had tinnitus for more than 20 yrs and Seems to be a little worse now....is L responsible for that? not sure, but I've noticed a couple of women
posting that they now have it since starting their Al.0 -
Thanks momine. About the hot flashes, I had them like that when I first lost my period due to chemo and it was severe like yours. Effexor really helped. Still had them but probably a tenth as bad. I don't think I could have functioned in life without the effexor. I am still taking it after 8 years and finally the flushing seems to have gotten less but its bad when the humidity is high. I notice I get them a bit more since taking letrozole but nothing unbearable. One thing I noticed is I went to FL for two weeks in august and its SO HOT there but my hot flashes hardly bothered me if at all! The only thing I could think of was that when I'm down there I make a gallon of solar tea every day and I always have it with me, sipping it all day long. No sugar or anything, just 4 plain teabags in a glass jar. Idk if that's what helped and its hard to get in the habit of doing that at home with working etc.
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sgreenarch- The first few months on letrozole I had those extreme hot flashes. My onco had me take 1,000mg of Vitamin E a day. It took about 3 weeks before I noticed them calming down some, but after about 4 months on vitamin E, they were so much better. I dropped down to 500mg of E and still the flashes were only warm and only have one or two a week. I'm currently trying no vitamin E to see if the flashes increase or if they are still better. I've been off E for about a month and the extreme flashes have not returned. If they do I will once again do 1,000mgs of E. They may have eased up anyway without the E, but I'm convinced it helped.
edited to add: about the sore joints and stiffness. I take curcumin and omega 3 fish oil for those. I found that the soreness is nearly gone, but i still have stiffness, mostly in the morning. I read that they recommend 4 grams curcumin a day for joints and I'm currently taking 6 grams of fish oil. http://www.webmd.com/vitamins-and-supplements/lifestyle-guide-11/alternatives-and-supplements-for-arthritis-joint-pain?page=4
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Shari....
I have that high anxiety and then the hot flash..I get them at weird times. I had incredible pain in my hands the first two weeks I was on Femera..it subsided...now I have shoulder and back pain. My MO sent me for xrays to check my joints, so now I am off it for 2 weeks to see if that helps> i had been on Tamoxifen but I ended up getting a blood clot in my arm! and I was terribly depressed. I generally like the Femera better but this pain is frustrating. It wakes me up all night! I can't even hook my bra and have a hating on jackets and shirts! very aggravating
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Shari, nice to see you again! I think the hot flashes you are describing are very similar to the ones I had on tamoxifen, and felt like I was going to pass out they were so severe. Interestingly, I don't know if it is just that it is another year into this journey and my body is changing, or if it just doesn't mind the letrozole as much, but I now have lots of drenching sweats without the fainting feeling, and very seldom with the awful hot flushing feeling - just a little bit. I think our bodies are just different enough that one drug will cause severe SEs for some and none at all for others. I wish they could come up with a better way to predict effectiveness and SEs for us ... I think pharmacogenomics will provide some answers, but that is so far in the future, won't help us now, but there is hope for others.
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Jittersmom....my biggest problem on L has been back pain and now it's starting in my shoulders....😡
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BUMP PLEASE
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I think I'm lost. What does bump mean?
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To keep it nearer the top of active topics
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Question. My cholesterol has leaped up from a barely acceptable level of 200 in December, to 251 now. I switched from tamoxifen to Femara in January. Pretty shaken by this. I eat really well, (almost vegan) take omega 3, exercise, steady weight(could use to lose 15 lbs, but still a tall size 12.) Never had high cholesterol before BC.
not sure what else I can do...anyone else?0 -
Sgreenache my cholesterol was alway well within the normal range until I had been on Femara for about six months. I tried to lower it by diet alone but that didn't work. Unfortunately it has taken a low dose statin to get it under control again.
Love n hugs. Chrissy0 -
Greenarch, mine has risen a little, but is still within normal and my "good" cholesterol is much higher than the "bad." I try to eat fatty fish 2-3 times a week, limit myself to 2 eggs a week and use low-fat milk in my morning coffee. But it sounds like you are doing all the right things and it is still rising
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I haven't taken time to check it out yet, but I read the other day that they are begining to think that low magnesium has more of an effect on our hearts than does the cholesterol. Even with all the use of the statin drugs, heart problems are getting more prevelant. Some people, (dr says my husband is one of them) whose body makes cholesterol and not much can be done to change it. He is 6ft2 wt 190 and usually runs a little over 200.
I am planning to do further study on it. The patient handout with Femera/letrozole lists higher cholesterol as one of the possible side effects.
Worth talking about this with our doctors...
Vickie
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I am not checking my cholesterol while on this drug. Mine has been borderline high, I brought it down 40 points with 2 months of proper diet and exercise, and have not had it checked again (that was before BC). I personally don't care what it is - am not going to treat it anyway, so don't want numbers to even tempt me to worry. I just have not been persuaded by the STATISTICS that MY PERSONAL benefits would outweigh my personal risks from the drugs. I am NOT recommending this for anyone else, but Vicks 1960 is right that there are other factors that may be more important in heart disease than cholesterol.
Have been on femara for over 3 months, added afinitor a month ago, still not having any shrinkage of tumor, and in fact, it may be expanding into the axillary vessels and making my arm swell, or else it is from LE (which I have not had before) or else it is a little of each. In any case, MO is talking about chemo .... will find out next week. Am disappointed as these drugs have been fairly easy on me so far. I haven't posted much here, but have been very appreciative of all the support and information from those who DO post here. Many thanks.0 -
Hockeynut,
I am with you and am about ready to throw in the towel on Femara. I am experiencing joint pain daily and it is hard to get my daily chores done. I just ahd a long talk with my Onco and she said while Femara is better than Tamoxifen, it is not a real big difference and both drugs are excellent. She said I would have the option to switch back, so I may just do that although the Tamoxifen hadSo it really is a catch 22 but i may be worth mentioning to your Onco. Overall I tolerated Tamoxifen better (and I never thought I would say that, I was anxiously awaiting the day I could switch). So much for that. Best of luck to you.
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nanna,
I started taking it about 3 months ago and I have had side effects for about the last two. It seems like they are increasing over time, at least for me but the one side effect that bothers me the most is the joint pain. Just miserable, I amseriously considering switching back to Tamoxifen.
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jittersmom,
I feel your pain. I was on the Tamoxifen until about 3 months ago and am now on Femara. I was waiting for the day my Onco would tellme I could make the switch. Now I'm even more miserable than I was on the Tamoxifen and am seriously considering switching back, something I never thought I would hear myself say. My feet stay swollen so I have to constantly sit down which makes outings no fun at all (not even retail therapy).
The good thing is we live in Florida, so lots of flip flops, which means no tying shoe laces or buttoning coats. I guess we have to take the good with the bad. LOL
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I haven't been on here for awhile...but Femara seems to be making its presence known in my life. It seems every time I start another drug my symptoms increase.
I have a few questions, and maybe among a few of the ladies on this thread, I can find some common ground. I took Arimidex for 2 months; now on Femara for 17 months.
Q: Do side effects from Femara seem to come on strong then lay low for awhile then return?
Q: After suspecting my hair on top of head may be thinning for at least 6 month, my hair guy today asked me if I was undergoing a lot of stress. Why did he ask? He found allopecia - hair loss - on my hairline by my forehead. It is a "spot" the size of a nickel or quarter...not sure. He said that meds usually cause hair loss all over the head, not in clumps. I have not seen hair coming out. I was really shocked and am upset.
Q: My cardiologist doubled my Crestor from 5mg to 10 and my aches increased; then my body adjusted...now the pain is constant.
Q: I took Cipro for a week. Right away I noticed the cognitive skills were dull. I developed those constant aches in lower leg and feet. This is new...
Q: In October, 2012, I developed tinnitus...almost overnight. It was mainly a background noise but now it is getting louder. Will it ever go away??I also have permanent (?) arthritic growth in my thumb joints and palms. It hurts.
I was doing great...working through any minor symptoms. Now, I want to go off all drugs for 6 months to find out who I really am...I just don't feel like adding pain killers to the mix I already take.
Thanks for reading...
Joan0 -
I don't post often but I want to let everyone know how much I appreciate this community. I come back and read what others are going through when I have a bad day. I have been on Femara since early February and I'm trying to ignore the joint pain and the hot flashes but the pain can be really tough at times. I have arthritis in my knees and am finding it debilitating for the first time. I want to exercise but I get home from work and I'm exhausted. I think the mood swings are the worst side effect. I can be so awful and mean and then feel incredible guilt. I don't want to take any kind of mood enhancers but I'm beginning to wonder how much more my husband can take!
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Dear Bookwormtoo,
Don't dispair, Your body has been through a lot in the last few months, it WILL GET BETTER!
My journey started about a year before your's did so I can relate to what you are going through now. I have been on Letrozole (generic for Femara) since Nov. 2011, I have had a few SEs, hot flashes for the first few weeks (more than when I went through menopause), then it subsided, until last week, I have had a few again. I also have the joint annoyance, but I had been developing arthritis prior to my diagnosis. For several months after my diagnosis/surgery/radiation, I too had the mood swings. I would be sitting at my computer and for NO REASON start to bawl. My DH would say "oh, one of those times". Those too did pass or at least become less frequent.
Someone (I don't remember who or which forum) posted a suggestion of a book to read. I ordered it from Amazon and have found it very good information it is "AFTER BREAST CANCER" a common-sense Guide to Llife After Treatment by Hester Hill Schnipper. She too is a BC survivor. It is strange how some SEs can come and go....Good luck in your recovery journey..
Vickie
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Joan811, I've been on Femara for about 13 months. During the 6 - 8 months point my joint pain was very extreme, to the point I was using a cane to keep some of the weight off my right knee. Then it started improving and now rarely have joint pain. I still experience stiffness in the morning, but after I get moving that goes away. I use 6 grams of curcumin, 6 grams fish oil per day. Both have some science behind them that shows they relieve joint pain. I really noticed improvement when I added the fish oil in January.
As far as my hair - so far its quite thick (was always thin before chemo) and grows crazy fast. It is very dry, so I only shampoo once every two weeks.
I don't know what the side effects of crestor are, but it may be that it too causes joint pain. During the time my pain was really bad I was on an antibiotic for 5 weeks and one of the side effects of it was joint pain. So I was getting a double whammy.
For cognitive skills I use ginko and Acetyl L-carnitine. I've noticed improvment there as well. Curcumin also helps with that.
I developed tinnitus overnight from the chemo drug carboplatin. But it has not gotten worse since starting letrozole.
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Joan811; I am not here often either. I started Arimidex in January of 09 and switched to Femara after about 15 months of hell. I had far fewer side effects, but about a year ago noticed that my hair was thinning. I had a lot of hair to begin with--after chemo it came back really thick. I kept asking for thyroid tests, not realizing that the Femara is progressive and about 3% of those who take it lose hair. My oncologist at first told me to get some Rogaine and hang in there, but after a rundown of symptomes that included blurry vision, trigger finger in both hands, and a variety of orthopedic complaints, he suggested I stop the drug, 8 months early. Which really bothered me, but not as much as hair loss and other symptoms that may not be reversible.
My decision is not for everyone, as I had a lot of treatment--two years of Herceptin, a year on the Neratinib trial (I got the drug), bilateral mastectomy without recon, ooferectomy and hysterectomy, ACTH, and 4.3 years of aromatase inhibitors. My oncotype recurrence score was only 9. However, i am not happy about stopping early and I did ask if I could switch to Tamoxifen. He gave me a scrip, but I think the hair thinning is way more common with Tamox. So I haven't taken it.
The hair thinning is from testosterone taking over in the absence of estrogen.
I have been off for about a month and nothing has changed. I am told it might be six months or more, although I think my memory is returning a bit. My joint pain which I found the worst of all was improved enormously by walking (initially through the pain) every day for twenty minutes. The side benefit was that I went from osteopenia (hip) back to the normal range.
Biotin shampoo and vitamins really work on your hair, by the way, though they will not make it grow, it makes your hair more full and stronger.
Warmly,
Cathy
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Interesting re blurry vision as mine is too ....... Been off several weeks and still blurry.......
Seems little hope of feeling reasonable on any of them.......0 -
Joan, I've been on L for about 14 months now. Regarding tinnitus ...I've had it for more than twenty years and have noticed it getting progressively worse over the last few months, meaning louder. I had a tremendous amount of hair loss but it is almost back to
normal now. I take 600 mcg of Biotin daily for that. I have also had blurry vision off and on since starting L....some back issues so I have a massage every two weeks for that.0 -
GrandmaV, cbm, Scottiee,
Thanks for replying and sharing your different but similar experiences. I was doing so well and now it is though I am spiraling into a bad place health-wise.
I am glad you shared your specific supplements - I seriously need to make it a priority to find the best choices for me. Right now, I take only wellbutrin which brings it's own SEs to the mix...but my mood swings were awful.
I told my MO when I asked for xanax that I feel like I have PMS and menopausal symptoms at the same time. She never heard that...hard to believe though.
Today the leg pain was so bad...I drove 2 hours and was miserable...i need to PCP to rule out lyme's and then work on rebuilding health.
Thanks again, and I wish you better days ahead.
Joan
PS - Cathy, you have certainly been through a lot especially with such a low onco score. I did not choose chemo with my score of 13... I understand now why some choose to be off the AI drugs.0 -
ok ladies question? I have been on hormonal therapy since last June first Tamoxifen...now femera, my shoulder and lower back are painfull my MO had me stop femera for 2 weeks still have pain...he is sending me for a full body bone scan next week..I am not sure what is bone pain verses muscle pain..I just am so used to having pain all the time! ugh! any words of wisdom??
thanks
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If it is muscle pain it usually helps if you rub it. At least that's how I see it.
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