FEMARA
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My hair definitely has thinned more after the switch to femora. However, my headaches improved and my attitude is MUCH better. I've just become the "hat lady." Several have noted that the brand of generics has made a difference for them. I didn't notice it on femora but did on arimidex. Experiment until you can manage your SE's. If your MO won't work with you on that or minimizes your SE's, look for another. It's your body!
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CBK - I was on femara for 6 1/2 years and I had no thinning of hair. Now I've been on anastrozole 6 months still haven't noticed any hair thinning. I have same se's as on femara plus now I have headaches, so thinking of asking to go back to femara.
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Thanks Taco... I hope my hair stays I don’t look so good in hats!! As bad as I feel sometimes on Arimidex I kind of was thinking at least I know what to expect on it. Maybe I should just stay on it.
My MO said there is no need to take a couple weeks off just start the Femara. I found that odd?
Grandma V. Sorry to hear that about headaches but at least you are lucky to have that hair. After chemo I’m a little overly sensitive about my lid. Kind of superficial I know, but mentally I can’t take losing it again.
Thanks Ladies!!!
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CBK - When I switched from femara to anastrozole my Onco had me take a month break before starting anastrozole. He didn't say why, I was just glad to have a month off. I didn't start feeling better until the third week.
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CBK - Count me among those who've not had any hair-thinning due to Femara (I've been on it a year). Here's what I think - everyone responds differently, so how you respond may be completely different than how I have responded. Also, I recall my MO telling me that each of the Aromatase Inhibitor choices would have a different - and sometimes similar - set of possible side effects; no way of telling how anyone in particular will respond to any one drug.
I am fortunate in that I have had no aches, pains, weight gain, hair thinning due to Femara. I DO work out very very regularly and I do eat very very mindfully, following a primarily whole-food-plant-based diet/way of life (easier than you think) which has enabled me to hold my A1C number and cholesterol numbers steady at the level they were at last year despite being on Femara (which CAN, for some, raise both). I also attribute the condition of my skin and hair (both really good these days) to that plant-based way of eating. Bones? We'll see in June when I have my next DEXA-scan; Femara can reduce bone density but my MO put me on twice yearly Prolia shots and I take extra calcium and vitamin D at his recommendation (plus I do a lot of resistance, weight-bearing exercise).
That's more than you asked about, but I thought I'd be thorough. To me, the benefits of Femara - knocking back the risk of recurrence - far outweigh everything else. Good luck and keep us posted!
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I think at lot of things affect our reactions to meds starting with our personal body chemistry. I think age, menopausal status (for how long) previous treatment, when we start (all alone or taking other treatment still), is this the first diagnosis, etc.
I was dreading going on AIs after my experience on hormone blockers before. So far, while not fun, it has not been as horrible as I anticipated. Some of the other SEs I'm not really going to be sure if it's the AIs until I have completed my other treatments.
At 46 I started Tamoxifen and had horrible hot flashes, insomnia, etc. My body wasn't used to being without estrogen. I had about 16 months between finishing it (5 years as recommended) and my second BC diagnosis. At 53 and after chemo my body wasn't so used to having as much - Why I think I'm having less of those. My friend was 63 and had hair thinning, but really no other SEs on 5 years of Letrozole. So I think PatsyKB is right. All very different..
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PatsyKB- Here here, I am a huge proponent of the plant based diet. I recently started it, rising cholesterol and watched a few documentaries that gave me the kick in the can to start it. I lowered my cholesterol and LDL so significantly in one month my PCP had a smile on her face. I’ve always been a very good eater, tiny frame with very low BMI and exerciser. But since I’ve had Oophorectomy I gained a lot of weight; this really bothers me because I’m exercising more than ever. I’ve taken some off but I still need to lose a lot more. But I just feel better on plant based. Very little sugar cravings. I thank you for your thoughtful reply and it definitely was NOT MORE than I was asking for!
Bgirl- I concur of course someone that is pre-menopausal or peri-menopausal and is placed in medical or surgical menopause I feel suffers with side effects of the Als and loss of estrogen so much more severely than someone that has gone through menopause already naturally. Although I was blessed to have sprouted a crazy amount of hair post A/C Taxol. I have struggled with other side effects of anastrozole despite fighting on every level I know how; post Oophorectomy. Hence my MO signaling maybe we should switch to Femara.
I’m honestly feeling a little early post Oophorectomy.. to jump to this conclusion. Since I’m improving in many areas.
Thanks everyone!!!
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Maverick, So sorry for what you and your mom and sisters are going through. Now that I am 2 years out, I definitely know what you are talking about! For me the mental is worse. I sometimes wonder if I will ever be my happy go lucky self again and I hate that. Can I ask, did they do any kind of oncotype DX or anything for you?
-Krista
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Krysta, Hi! Thanks for asking. I did have the OncotypeDX done. That showed I wouldn't benefit from chemo this time around. My score was 21. I am extremely thankful for that as I had a rough time with it my first time with breast cancer, in 2003..
I saw my plastic surgeon, or should I say, the Physician Assistant, today. I am still kind of annoyed that I never know who I will see when I go for a visit, but I guess this is the way teaching, cancer hospitals are run.
I do like the PA, and surprisingly, I felt better talking with him than the doctor anyway, so I guess it is all good.
As for my sister, she has an appointment sometime this afternoon with her breast surgeon. She is taking it hard. I guess because I have been through this twice and this time it was so much more involved as far as surgery goes, I don't see it as an earth shattering event. I told her to expect a lumpectomy, probably with radiation. She is afraid of that because of what happened to me, but our other sister had radiation and did not get burned the way I did. I gave her some suggestions of questions to ask her doctor, and told her I am here for her anytime of day or night. I know she will be fine and will most likely feel much better after her visit with her doctor. She lives about two hours away so she is not being treated at the same hospital, but the hospital she is going to has a great reputation.
I am still mentally struggling with the Letrozole, but most of the time I don't think about it. I know it is too early for SE to occur. I try not to focus on it. Several amazing women on these boards privately messaged me about exercise. The power of this board, the support, it constantly amazes me! I do plan to join a gym. I asked today if I had any restrictions and was told no. I return to work next week, so I am feeling so much better mentally as well. I am going to get my life back, a bit different, but back none the less.
I am also excited because May will be my first "no doctor visit" month since last June! I have my MO visit this June and 4 specialist appointments in July, so I am going to cherish each day of May!One day at a time! ((((hugs to all here)))) I couldn't get through all this anywhere near as well, without all of your support! I plan to pass on that support to others as I continue this journey!
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I completed my sixth year on letrozole in April, and my oncologist told me that I could come off it next year when I see her for my annual check-in. I have been one of the fortunate ones who has been able to tolerate this drug well with minimal side effects, and for that I am grateful. After my original diagnosis of ductal carcinoma in situ, and after lumpectomy and radiation, I was offered tamoxifin which I refused to take. I have found myself wondering if that is why I had a recurrence in the same breast leading to chemo, surgery and radiation in 2013.With cancer, there are so many unknowns. I hope my experience can encourage anyone who is on the fence about taking that little yellow pill.
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Does anyone know why body weight doesn’t make a difference in the dose of Femara/Letrozole?
I’m very overweight yet I get the same dose as a 115 pound woman. Why
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Aromatase Inhibitors suppress hormones. More is not better.
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So, I could take half a pill?
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Thank you JoE777
Also, has anyone had a recurrence while on an AI without being positive for BRCA 1 or 2?
My oncotype score was 21, 7% chance of recurrence with AI.
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I took femara for two years and took myself off because of SE. Four years later I'm metastatic
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Mavericksmom, I didn't have a recurrence but did have a new primary in other breast that was also ER+ in my fifth year of taking femara. It happens sometimes. AI lowers risk of recurrence and contralateral breast cancer but does not mean no risk.
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JoE777 I am so very sorry you are stage IV even after two years of AI. I hope I can go that long. So far so good, but I just started three weeks ago, so I think it is too early to know if I will get SEs. I want to thank you and GrandmaV for the responses. The way the doctors make it sound, taking an AI totally prevents the cancer from metastasizing and new primaries. I didn't think that was the case but I guess I wanted to believe them. They probably didn't lie to me, just worded it to make it sound really positive and my mind filled in the blanks.
The truth may be ugly, but I still would rather know the truth. Again I thank both of you for giving that to me.
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Mavericksmom, I'm surprised at your comment about doctors making it sound as though AIs totally prevent metastatic recurrences and new primaries. That's really disappointing and unfortunate if your doctors presented AIs in this way; that was certainly not the case with my doctors. In fact my MO made a point of explaining both the relative and absolute risk reduction benefits for both chemo (which was not recommended due to the low absolute benefit) and AIs, and was very clear about the risk level I would still have even taking the AI.
Did you get an Oncotype score? Even if your doctors were not clear in their discussions with you, the report you received from Genonic Health should have been clear. The metastatic recurrence risk that is associated with your score assumes that you do take endocrine therapy. So that in itself says that there always is some risk even when taking AIs.
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the good news is , once I was DX metastatic to lungs and bone I was put on femara again and kisqali. As of November of 2018 (after 8 months of both drugs) I'm stable and have no evidence of active disease. The femara has suppressed the cancer alone since then. The SE are miserable but the onc started me on cymbalta Today and some of the aching has already subsided. Knowing what I know today I would have continued on the AIs but it was my choice that had some pretty significant consequences.
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JoE777 - I’ve been on cymbalta for about 9 months now and it has helped with both AI SEs and anxiety. I also take Tumeric and glucosamine. Between the three I still do have stiffness but little to no joint or bone pain. I hope cymbalta works well for you, too.
Lanne
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Yes, turmeric may support joint health, and a supplement form the is hydro-soluble absorbs better. Thanks for sharing what may have worked for you.
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Seeking advice or experience
Hi all, I have been on the “letroz” brand of letrozole for 18 months with minimal SFX. Now my chemist tells me the manufacturers don’t make it anymore and gave me a brand called “fera” anyone have any experience with them, or should I take them back and ask for “femara”
Cheers,
Jackie
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Hello Ladies, I have been taking Femara (Letrozole) for 2 years now (after taking Tamoxifen for 5 years). Within the past 6 mos to 1 year, I have developed joint pain that seems to be getting worse as time goes on. I have it in my fingers, wrists, hips, knees, ankles, feet and toes. There are more times than not when I get up from sitting and I ache so badly from the hips down, I feel like a 100 yr old woman and my feet hurt so much it is difficult to walk .... I am only 50 yrs old. (Wearing supportive shoes helps some). I also have fatigue (but not enough to sleep), but enough to sit and close my eyes for a while. My Oncologist told me all of these similar drugs have the same SE's, so I decided to keep on with the Letrozole and try to combat the SE's with Advil.
Does anyone know if once we stop taking Letrozole, will these side effects eventually stop/lessen as well? I walk and am an active person and it doesn't seem to make a difference with the aches. I am praying this will get better since I am only 50 yrs old. But, I also realize, I am fortunate so far that I have not had a recurrance to date and am beyond thankful if this med has helped.
Thank you for any insight you can provide, if you've experienced it or know someone who has gone off Letrozole and hopefully did feel better :-)
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IDartist - I can't speak to whether the side effects lessen after ceasing treatment, although it stands to reason that they would.
I can tell you that I had some pretty significant issues with joint and fascia pain about 2.5 years in to treatment. I found that the combination of a glucosamine-like supplement and acupuncture dealt with 85% of those pains. If you can get a referral to an excellent acupuncturist you might find some relief. If you're really lucky you'll find that your insurer pays for some of it, too.
Good luck figuring it out - hang in there!0 -
Thank you Hopeful8201 :-) I really hope the SE's stop once we stop taking the meds!! I have heard taking Glucosamine helps and may try taking that, though I don't think I can do acupuncture ;-) Hope we are all able to get off this yucky med soon!!
Blessings!
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Follow-up with oncologist today. Have been telling her that the letrozole (generic) has given me hives, and of course she still doubts it's the letrozole. (IT IS.) Found out that if I get brand-name Femara, it would cost me a $50 co-pay (as opposed to about $10). It's not a fortune, but I'm still hesitant, in case it doesn't help, or has worse SEs.
Anyone else with experience of hives on letrozole who switched to brand-name?
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I developed hives about a month ago, the dermatologist gave me steroid to take and had me Change up my allergy medicine (from Claritin to xaclol(something like that) and to take a Zyrtec in the afternoon). It cleared up, after about a week of the steroid, and I have had a few small spots, but nothing like before. They were not to itchy, but hot to the touch and burn, would swell and leave mild bruising in my skin after clearing up. We just assumed that I came in contact with something and my immune system couldn’t fight it. I never thought to could be the femera since I’ve been on it since October 2018 (same manufacture Breckinridge). I am also on Ibrance since June’s 2018.
Is your hives similar
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I've had a couple of outbreaks, on my hands and ankle, and also palm swelling (which I have read is associated with letrozole). Mine have been itchy, but no burning or bruising, just pink/red pimple-like bumps. Have used cortisone ointment for the itching. I have been wondering if it's the fillers that cause the reaction, hence wondering about switching to brand-name. I've had letrozole from Accord and Apotex.
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I had the hives on my hip, upper side legs, the bottom of my feet(different times)(they would swell on the pads of my feet and get red)and on my left arm at the wrist and pad of my hand and on the right side my upper arm. One would clear up and another would show up, except at the beginning on my hip and upper thighs, they were the same time.
It was very strange
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Wow, Billb464. What, if anything, did you do for the hives?
I like my MO, but it does disturb me that she disputes that the hives are from the letrozole. Kind of insulting.
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