FEMARA
Comments
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Taco2946 - what a ridiculous rule, why encourage smoking? Does the rule exclude CBD oil that doesn’t include THC? Lanne
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answered my own question ... CBD oil appears to be legal in AZ. From what I’ve read, CBD is better at pain relief than THC. Lanne
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Lanne, (Lanne2389)
What a great article you shared from the Breaking News thread! It also links to other excellent articles that many of us are interested in. I wonder how many of us are taking the bisphosphonates (Zometa, Bonefos) for prevention of bone mets, not for osteoporosis or actual bone mets? This article states that these drugs not only treat metastatic breast cancer to the bones, but also reduce its occurrence, when used with an AI for early stage breast cancer. We all want that!
(You can ignore this paragraph, which is just a vent.) I want to ask my med onc office about this asap. However, I'm not getting answers via the patient portal, telephone calls to the triage nurse, or text messages to the NP. She had given her number to me and encouraged me to use it if I needed to reach someone. This in itself, is frustrating to me. If I didn't belong to this online group, and have some knowledge of how to research my own concerns, I would feel even more "out there alone." I liked the med onc so well (better than the 3 oncologists I have!), but I only saw him at the initial visit in February! 2 visits since with the NP to start Femara and follow up with it in one month. Now, my next appointment (with the NP) is not until November. This is too long. But, sheesh, I hate to change to a different system at this point.
Mielli
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just found this interesting article while I was searching for info for work
It talks about anti-inflamatory meds and herbs. Those of us with AI problems may find it useful. As always, talk to your dr.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC30111...
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Thanks for the clarification, Lanne. I'm of the "pre-pot" generation and haven't looked at this too closely. So far am managing femora SE's but glad to know I have that as an option - I was convinced I didn't.
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Mielli - I had my MO write down for me my future schedule of Dr. appts -
MO:
Yr1 - every 3 months (I assume Yr1 started when my first treatment (chemo) started
Yr2&3 - every 4-6 months (but I also see him before each semi-annual Zometa infusion, which ends after Yr3)
Yr4&5 - every 6 months
Breast Surgeon: once a year, first 5 yrs
Radiologist: once a year, first 5 yrs
Plastic Surgeon: not sure on this one so TBD. I've seen both the PS and the NP, but am always encouraged to make an appt with the PS if I want one.
Does this look like everyone else's?
2Fun: liked your article! - they included dosages, which you almost never see!!
Taco: I haven't been around pot since HS (40+ years!) - so much new info! Back then it was just green stuff in a baggy someone’s older brother shared. Now I’m having conversations with my 17year olds and sometimes its ... awkward!
Lanne
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lanne, LOL! For you ladies that have taken a break from letrozole for SE how long did you go off of it? I am taking my first break and on week 4 off. It has helped a bit, but I feel like I need at least another 2 weeks. Then my MO wants me to start back up at every other day instead of every day to see if I tolerate that any better. Has anyone done this? If not she will talk about putting me on Aromasin but that kinda freaks me out because I read something about that one causing irreversible changes. Any advice?
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Lanne - my name says it all. My husband thought it was great that our son took an interest in having plants in his room. Talk about out of the loop! We're currently in Maine for my sister's 70th birthday. Pot came up during the dinner conversation - Our daughter and niece and nephew all said "no" and my niece (whose teen-age children were at the table) said "that's the right answer." LOL
I saw my MO or her PA every time I went for herceptin. Then every 3 months. Now at every 6. See BS every six months following my mammogram. Haven't seen the radiologist since about 3 months post radiation. I had brachytherapy so was done with him really early. I also see primary (and MO gets all his notes and she gets all of his) about every 6 months. I try to stagger the MO and primary so I am seeing someone about every 3 months. BS's office does the best breast exam and I love the mammogram tech.
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2FUN, thanks for the informative article by a most reputable source!
Mielli
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Lanne and Taco1946,
My MO's NP texted me today and said the following re: CBD oil, in answer to my question about trying it:
"As for CBD oils, we do not recommend for or against. There is no credible data available suggesting it's effective. Therefore we have no idea what dose or how often, etc., to recommend. You would be taking it at your own risk."
My take from this is, at least they are not telling me not to try it.
Mielli
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Muddling, no the pill is the same. Perhaps it is just related to my age and the high humidity.
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Hello AI girls, I am new on this forum. I am 8 weeks into taking Letrazole and I was feeling pretty great, no bad side effects. But... the last few days I have woken up with major hand pain. I thought it was my new Bike that I've been riding a lot but after some research I'm seeing that hand pain is an issue with this drug. I didn't read over all the pages, but wondering if anyone has some excellent advice for me. I'm waking up with crumpled hands, cant make a fist, pain that is not controlled with prescription grade Naproxin.
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@ GKBUSER @ 18 months on Letrozole, I really felt like I had hit a wall and was considering asking my Oncologist about switching to a different AI. Instead, he suggested trying a short break first. He told sometimes going back on Letrozole after a break, the body kind of 'reboots' it's reaction to the med and things can get better. I had a friend that this worked for (her break was 6 weeks). My Oncologist would only agree to a 2-3 week break because of the aggressiveness of my cancer. After 3 weeks, I did notice an improvement that remained even after going back on the med, especially with my hands. I was developing some really bad, stubborn trigger fingers and those have not returned since going back on the med. I still have stiffness and aches and pains, but the break definitely helped. I think a longer break would have perhaps helped even more, but my Oncologist wasn't willing to extend it in my case.
Everyone should definitely talk to your Oncologist about taking a med break before switching drugs unless things are intolerable. It definitely worked for me.
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indahood- fellow hand pain sufferer here! Curcumin has helped me tremendously. I take 1 softgel a day and it helps so much. My left hand is a little stiff in the morning but not like it’s was with the knarled up fisted fingers. There are a lot of brands out there and some are absorbed better than others. I take the Solgar brand. I buy it at The Vitamin Shoppe but you can also get it online.
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Does anyone have recommendations for different manufacturers of letrazole to reduce side effects? My Inc nurse says trying different ones might help. I just spoke with my pharmacist, who gave me a quote for brand name Femara, and it was outrageously expensive under my insurance plan. Grrrr. The generics available to me are manufactured by Accord, Breckinridge and Appotix. (?). I’m on the Teva manufacturer now and struggling with the joint pain. Anyone have advice?
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Find as board certified hand therapist (OT or PT) to make splints for you and instruct you in joint protection! Do that now while u are working out your meds.
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Mom-mom - I have been taking Accord letrozole since December. (Before that I did Teva arimedix for 6 months. Switched because of headaches, not joint pain). I think most of my aches and pains are age related although I am seeing ortho on Monday about the possibility of a cortisone shot in my right knee. We have a trip coming up that will have lots of walking and I want to enjoy it to the fullest. Whatever one you take, try to get some exercise and hydrate, hydrate, hydrate. I know I feel better when I get my golf and stretch and flex classes in. I've gotten a little competitive with my fitbit friends - two of them from my starting chemo Feb. 2017 thread.
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amyslp, on week 5 of my break and feel so much better! I was beginning to lose hope. I would agree for people to try taking a break if they are suffering.
MomMom, from what I read on the forums every woman is so different as far as what maker they tolerate. I was on accord for about 18 months and then things got bad. Incidentally my Pharmacy has just been sold out to another group and they're going to start using the Breckenridge. So when I start back up in a week or two I'm going to be taking the Breckenridge brand.
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Indahood,
I am 3 1/2 months into letrozole, with pain beginning at 6 weeks and increasing since. I have not been a person to try supplements or believe much in them, but I too have experienced painful hands, fingers, base of thumb -- when touched it's very tender! I have started Omega 3 (vegetable based/cannot tolerate fish oil). I also started Turmeric . . . and CBD oil. These have all been added at different times in the past month, but I am noticing less pain and stiffness. Mine had extended to knees, elbows, hips, sometimes shoulders. I cannot take NSAIDS, so something in these supplements, or the combination, is beginning to help! I also take Tylenol Arthritis (extended larger dose) morning and bedtime. Wishing you well on this unchosen, mysterious journey. We have to be our own best advocates. Ask, and keep asking for help, and research quality sites!
Mielli
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momom- I take accord brand. I also take curcumin to help combat joint/muscle pain. I had to miss 2 doses of my pills about a week ago and realized how much the curcumin helps as I woke up so stiff I had to shuffle to the kitchen and my hands did not want to open up from the fisted position they were in. I took the curcumin when I got to the kitchen and within about an hour or so the stiffness/pain was greatly reduced. Taking them together I have a little stiffness in my left pointer finger extending down and around to my thumb in the mornings tha goes away after couple flexes of my hand. If you’ve never not tried curcumin, you may want you give it a whirl. I use the Solgar brand due to its increased bioavailability and fast absorption.
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I am on week 3 of taking a break from letrozole. I have noticed that my eyes, ears and lady parts aren't as dry as they were. The dry eyes were causing vision problems. My ears were flaking. Lady parts were better since I started Fem-dophilus too. I ran out a few days ago and noticing dryness again. I have used Vit E suppositories in the past which also help.
The hot flashes have decreased greatly.
I have minimal relief of hip pain and muscle soreness and cramping, so maybe that's just my age. I'm 67. My trigger finger is sore but it's no longer locking up.
I am sleeping MUCH better, not waking up all jittery in the middle of the night. However, I'm also on vacation at our cottage, so I just may be more relaxed.
I have tried Arimidex and Aromasin and both had worse SEs than letrozole for me. Arimidex was the worst for pain
I have tried CDB oil under the tongue. After a lot of research, I bought it from Purekana. Someone posted a link to them. It took away all my pain within a day or two. Unfortunately it also made me hyper, especially at night, and I wasn't sleeping, and had a hypoglycemic reaction also. I ended up using it in magnesium lotion for the muscle aches and it does help.
Once I get home, I'll decide if I'm going back on the letrozole. For the minimal increase in survival rate for me at 5 and 10 years, I don't think it's worth the diminished quality of life. My MO said he would support whatever choice I make.
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Nancy, good luck. I'm going to give myself another two weeks off ( for a total of 6) and see how I feel. I may try it at an every-other-day dosing instead of an everyday dose like my MO recommends. I've thought about the few percentage points of survival difference also. What I would like to know is what percent will it help the cancer not come back at all. I not only would like to be alive in 10 years I would like to be alive without the cancer. I never thought it would be so hard to stay on these meds. Wow, but then again I think I went from being a happy-go-lucky 51 year old on HRT to sudden and severe menopause with chemical menopause and then an aromatase inhibitor on top of it.
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That’s what I decided Nancy, my feet felt crippled, in the morning I felt half dead, my knees were awful, hands stiff wth pain, and it was doing bad things to my eyes. Maybe if we were allowed the Brand Femara it would be different. Cruel of them to keep the price so high.
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I've done OK on generics but I know that some MO's have been able to get insurance companies to pay for the formulary. Also, check directly with the manufacturer. I know people who have been able to get arimidex directly from the company for $1.00 a day. I would hope that the manufacturer of Fermara would do the same. I also know I feel better on letrozole than on arsotole (sp?) but others feel just the opposite. Hopefully your MO will work with you to find the right fit.
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I just started my 3rd month of letrozole I can handle the joint pain what I can handle is the exhaustion I feel on it. My work schedule is 2 12 hour shift then off for either 2 or 3 days. It takes me 2 days to get off the couch and feel somewhat normal. At work I sometimes I forget my words which is never good in the area I work in. I know I have only been on this a short period of time but i consider stopping everyday. My quality of life is importa
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hate to say this but my SE got worse the longer i was on it first time around. I was about 25 yrs post menopausal - surgical at 27 yrs. Not bad at first. 2 hot flashes my whole life. But the aches and pains gradually got worse and eventually diagnosed with fibromyalgia. That went away after stopping letrezole. Major insomnia kicked in later too.
Fast forward a few years and im stage 4. Letrezole again with falodex and ibrance. Minimal side effects but they are starting to kick in. Now im taking magnesium citrate and vitamin d3. Meditation and accupuncture is helping with sleep so far - usually. I have experimented with timing of letrezole and havent figured out a best time to avoid insomnia
Gail
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Mom-mom - when I first started Letrozole, I did well with Roxanne (which was bought out by Westward Pharmaceuticals) - Did very well on this mfg - but Westward stopped manufacturing the drug.
Switched to Accord and doing fine. Make sure you get some stretching (I do yoga) in to help with joint pain.
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i have had a mastectomy after having a lumpectomy that did not get all of the breast cancer. They tested 4 lymph nodes and they were all negative. The cancer was completely removed. They are not doing chemo or radiation but are putting me on Femara. I have had 3 total knee replacements weird muscle pains in my legs, and have irritable bowel syndrome with diarrehea and gas. I have these issues before taking the drug. Is this really necessary for me? Are there alternatives?
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hisbld4u, you might not have any problems at all. It can't hurt to try it, especially if you know what your baseline is.
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well I have started back on after my 4-5 week break trying g to figure out what the lump is in my chest wall which was fat necrosis. It is super painful and I asked them to send me to pain management. I have another large area on the left and my arthritis is not happy. I came off of those pills since 3 celebre a day did nothing. I thought I read a thread that mentioned if you took Claritin for a!mercies helped with the bone pain.
I am I that crazy and though wrong?
Anyone else have any experience or words of wisdom for necrosis? What is these painful lumps never go away?
Feel defeated 🙈
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