FEMARA
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6 months on letrazole now and was doing okay with daily exercise. Caught a cold a week ago and is worst I have ever felt with a cold. Every joint aches and can barely get out of bed at times. Take care of yourselves and avoid catching a cold or flu. Hands and toes seem to be the worst. Read that Claritin might help. Any input??
Thanks!
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Seen a lot of positives on Claritin for AI bone/joint issues. I'd just give Claritin a try and see. It was a biggy during chemo for us who got Neulasta shots as the big side effect is bone pain. It seems to have helped most of us.
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Thank you, Artista928. Will give it a try.
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Claritin helped mitigate the bone aches I got after my Zometa infusion last Aug., and taking it for a week before and after my recent Prolia shot kept my bones from aching at all. (I use Zyrtec for allergies, so I figure that if I use Claritin only every few months to combat pr prevent bone pain my body will not build up a tolerance for it. Decades ago when I moved here—after 7 years in ragweed-free Seattle—my hay fever came on with a vengeance; my primary suggested rotating three antihistamines, just as my stylist recommends alternating shampoo brands. So I figure that might apply to Claritin’s efficacy for bone pain as well).
Windingshores, which Part D supplement covers brand-name Femara at all, much less for only $95/mo? I had to buy it online from Canada for $588 for 90 pills—brick-and-mortar drugstores here charge $2100-2700 for the same number of pills. I pay $9/mo. for generic letrozole (were I willing to drive 6 mi. to Wal-Mart or deal with mail-order pharmacies—which I detest—it’d be $5). Unfortunately, my drugstore couldn’t get Teva or Roxane this month and filled my Rx with Accord generic letro. All was well till I woke up this morning with my R index finger triggering (stopped once I stood up and the blood began flowing—but that’s how it started with my thumb and I had to get a cortisone shot and almost surgery, which I canceled when it disappeared at literally the last moment: I was in pre-op at the hospital). I am a guitarist and I finger-pick with thumb-and-forefinger, so this is a rather revolting development. Gonna dip into my real Femara stash for awhile and see what happens.
Started personal-training a couple of weeks ago, twice a week. Went back to low-carb too. Down 8 lbs. So there’s hope.
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Oh, and the jaw pain is indeed a sinus infection.
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ChiSandy- yessss!!! 8lbs down. I remember that you caught a little flack about signing on with the trainer for as many sessions as you did. Glad to hear it's paying off already! Go girl!
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Yeah ChiSandy! I can't exercise with my pre-cancer severe bilat knee osteoarthritis so my pcp is giving me a scrip for Phentermine, an appetite suppressant. It's not really a junk food problem as I can curb that ok (though I do on occasion have junk food), but portion control! Food is my emotional crutch esp since I live and am alone. It's the only comfort for me, which is not good. I pick it up on Mon so we'll see for me too!
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~Artista~
Let me know how you do on Phentermine. I have been trying to lose, too. I can do 20-25 minutes of basic walking, but I am carrying too much weight to do much else. I lost 25 lbs. before surgery last year; gained it all back during radiation; lost half of it after radiation and thought I was on my way, but it has crept back since I started letrozole. I have been walking six days a week since January and feel more energetic, but I don't see any benefit in the weight loss arena. I am thinking an appetite suppressant might help, but I do worry about the possible reactions from my other medications.
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^^^ Feel free to pm me. My memory is meh and I may forget to update you. I may wait a week from when I pick it up. I want letro completely out before I start something else that may have se's.
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Hi all, I started on letrozole (or femzole depending on availability at pharmacy) 5 months ago after my bone mets showed progression on tamoxifen.
I'm finding the joint stiffness easier on letrozole, but am breaking out with large, painful cystic pimples on my chin & am going out of my mind with an itchy, burning, dry & flaky scalp. It starts at my hairline at the back of my neck & goes up about 5cm. I am so itchy I scratch till it bleeds!! Have tried moisturisers, anti dundruff shampoo & conditioner, cortisone cream cream but improvement.
Anyone else experienced this or have any suggestions
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hi karz
Chec with oncologist to see if you can take an anti histamine
All the best bright
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also anti dandruff is prhaps too strong you will need to look for a neutral ph . I noticed my skin and hair became a little dryer but i have not had contiued problems as i have a natural oily scalp and skin.
Be kind to your skin avoid extreme temp warm water not hot or too cold and i prefer non perfume soaps perhaps try goats milk soap and shampoo here in australia it is used for problem skin on babies
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kars72, I do not have cystic pimples but my skin gets rashy, burning and itchy, to the point where showering made me cry.
A dermatologist prescribed a steroidal cream, which helped, but I can only use it 2 weeks at a time. Overuse thins the skin.
I found help with a spray called Dr. Soother's. A doctor friend of mine makes it. It's for any skin irritation: bug bites, etc. The doctor said the formula is one that drug store pharmacists used to compound for patients. There aren't many compounding drug stores now, so he sells it. It's not very expensive, less than $10 shipped. It seems to calm down my eczema as much as the prescription cream. Amazon was out last time I checked, but you can order it direct with a simple Google search. I would post the link but don't want to get dinged for trying to sell something. My skin is feeling much better since I have been using it. But your doctor should maybe have a look.
I have taken phentermine in the past and it has helped my appetite. I hope it helps those who are taking it. As I see it, there are several problems we face with Femara. First, joint pain prevents many of us from vigorous exercise. Second, many of us crave sweets or other unhealthy foods. Third, we need adequate nutrition and it's often difficult to get that with limited calories. Fourth, many of our doctors lecture us about slowing metabolism and menopause, instead of helping. I told one doctor to stop shaming me and start helping me. It was because of my diligence that I was able to keep my weight gain to 20 pounds. Was she only going to help me if I abandoned all restraint and gained 50 lbs,? That would be like refusing to treat my cancer until it had spread.
Phentermine can have side effects like crying or fatigue when it wears off each day. But it does help.
I'm having luck with reduced appetite with my amphetamines, but the scale isn't moving much after two weeksand I'm still craving sugar. It's so unhealthy and I wish I could control it.
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thanks for the suggestions, I see doc for my 3 month check up on 24 April & will try the gentle approach in the interim :-)
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Karz
Unless there are open sores, I would like to recommend pure Tea Tree Oil. I have used it for decades on my itchy, flaky scalp and I get immediate relief.
1. Buy only pure oil.
2. Dab it on throughout your scalp. Cover your head with a bandanna or something.
3. Follow up with Desert Essence Tee Tree oil shampoo. If I have a super itchy scalp, I let the oil stay on all night before I shampoo. It's strong, though!!
You can easily find Tee Tree Oil in the health food store. It is expensive, but a tiny bottle lasts forever.
I love Desert Essence Tee Oil shampoo and conditioner. If I don't do the oil treatment, I let the shampoosoak in for a while before rinsing it
I get a lot of relief from this regime and there are no nasty chemicals.
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Karz, try a different manufacturer of letrozole. My pharmacy will order Roxane if my MO puts it on the prescription. Or try a different pharmacy. I've also read apple cidar vinegar as a rinse is good for dandruff, maybe it'll calm your scalp. Easy enough to try
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Hello friends,
I saw the BCN (breast cancer nurse) today and my understanding was i am to get a prescription for Tamoxifen as my 5 years was up on Letrozole. She was a little confused as to why I was being put on Tamoxifen and asked me why I thought I was as it had been decided at a MDT that i was to change (I am assuming with the full knowledge of my BS).
I said I thought it was because I am osteopenic (as a result of Coeliac disease and Letrozole - I guess)and that's why I was being moved to Tamoxifen. She asked if I would like to make an appt with my surgeon and I said i would, so she is going to arrange that.
I talked about the 10 year study for Letrozole - she said the oncologist is currently writing up the guidelines on further usage after 5 years and the research will be released some time soon.
I am a bit confused - and am in the UK.
Any thoughts?
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Wintersocks, my understanding is that outside of studies, letrazole is used for five years only. Tamoxifen has been studied out to ten years and found to be helpful in certain women. Perhaps your MO felt that you are high enough risk being IIIA to make it worth the off-label use of tamoxifen. Personally, when my five years on letrazole are up, I will lobby to switch to tamoxifen rather than going off meds entirely. I am also IIIA, grade 3 and was on tamox for 1.5 years while we made sure my ovaries had really shut down for good. I did extremely well on it - no side effects at all.
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I was supposed to be on the 10 year Letro plan. I went in saying I can't do 10 more days, much less 10 years. AIs now are being rx'd to high risk IIIs like myself for 10 years as studies have found that it does help. Who knows. I couldn't do it after 5 weeks. Started back on last night.
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I was going to try Letrozole. All the reading made me extremely wary. It's back to Tamoxifen for me. I'm on the 10 year plan.
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gardengypsy- I quit letro starting last Fri and gave myself till last night for it to get out of my system when I took a tamox pill. I feel much better not being on letro. I expect to get the same se's I had on tamox before but at least I didn't feel like utter shit and so many aches and pains. My head fuzziness was probably the worse, coupled with being sleepy feeling dopey all the time. But then for some they don't have se's or nothing bothersome. My pcp was on Femara for her bc dx'd in 2004 and she felt ok on it. I gave it a try. I'm relieved to feel better after stopping it. Hopefully my hair will stop shedding so much. On tamox it wasn't coming out in droves.
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Artist~ The final straw was reading that hair loss was a possible side effect. It's quite possible that I've made an important health care decision based on vanity.
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I don't blame ya gardengypsy. While I feel better, I can't even do combovers in some areas anymore. Very depressing.
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I decided to see if the shedding decreased any. I haven't washed my hair since I stopped letro. Got sick of watching so much just pouring out with no end. I'm pleased to say the shed has decreased! Still has some to go as it's still higher than my normal but I'm relieved. Hopefully the follicles aren't dead and I'll get some fill in in the many areas that are sparse now.
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I don't know what happened with me, but I had major hair loss when I started Femara. Went off for a month in December. When I started back, I expected more shedding, but ... none. In fact, my hair and nails are growing very fast. I always use my fingernail length as a gauge. When I was on Afinitor and on my early days of Femara, I had very little nail growth. Now, I'm having to trim my nails every two weeks, they are so long. I still have to wear a halo hair piece. I do keep polish on my nails at all times. They are too weak for me to go bare. I am not sure if the "vacation" from Femara helped.
I looked at my dose of Ritalin the doctor prescribed for fatigue and saw that it's far less than the recommended dose for ADD patients. I'm going to talk to my doctor about upping the dose. I'm also going to create a separate discussion, for others on AIs who may be taking stimulants or considering it. So join me there
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Michelle - my understanding the dose of Ritalin for fatigue starts at around 5mg. You might need more to get the effect, which can be quite an astonishing improvement, however the idea is to keep it as low as you can ... just enough to feel better.
>Z<
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I had no idea that Ritalin can be prescribed for the fatigue. If my energy doesn't boost before it's time to go back to work, I may ask for it.
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Hi Karz,
I had a similar itch except it was on my arms. I scratched them until they bled. My oncologist sent me to a dermatologist who immediately put me on Gabbapentin as she was sure the itching/tingling was from neuropathy. It has worked very well and most of the rash has cleared up. I will follow up with the derm next week.
Take good care,
Nancy
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For those of you thinking about asking for Ritalin, be sure you don't have any BP or heart problems. It sounded good to me for the fatigue I have, so I looked up the side effects and it's definitely a no no if you have any blood pressure or heart issues. Of course, I would hope you doctor would know that and not prescribe it.
Faith
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How are your glucose and a1c levels? Itching is a very common symptom of Type 2 diabetes, as it is a type of neuropathy—and elevated glucose and a1c are also more common after menopause and therefore on an AI because of the loss of estrogen. Also, the acne is a result of lowered estrogen levels from an AI—whereas tamoxifen, being a SERM, didn't reduce the amount of estrogen but instead blocked the tumor cells' estrogen receptors.
My hair started thinning about 5-6 yrs. ago, a few years after menopause. Letrozole hasn't accelerated it. I take biotin, make sure I eat enough high-quality protein, use keratin shampoo & conditioner (and only 2-3x/week to avoid dryness & breakage) and get a keratin treatment 3x/yr. In between shampoos I use dry shampoo, which absorbs oils but also creates some volume & texture. I notice that most of the women here with considerable hair thinning on letrozole also had chemo, which permanently affects the growth/rest cycles of hair follicles even after hair begins to grow back.
As to how long to take it? Tamoxifen was never an option for me: my family history on both sides is a cardiovascular trainwreck, and blood clots are a known SE of SERMs. Latest thinking (not quite consensus yet) is that for low-recurrence-risk patients (DCIS, or Stage IA Luminal A grade 1 or 2) 5 yrs. of an AI are enough—whether or not preceded by a SERM—and especially if osteoporotic or severely osteopenic. After that, the reduction in QOL, metabolic impairment (especially hyperlipidemia and increased glucose/a1c), and osteoporosis danger (coupled with the fact that anti-osteoporosis meds are not risk-free) is not necessarily worth the theoretical recurrence-risk reduction. Stage II or higher, Luminal B, triple-positive, and higher-grade tumors currently warrant 10 years of endocrine therapy.
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