FEMARA

Nancy2581---I didn't do an AI but did 5 years on Tamoxifen. My cholesterol was 176 when I started and 222 by the time I finished! And that was with me finally joining the gym and exercising. My doctors never worried because they said these drugs can cause an increase in numbers and they'd probably drop when I stopped. Well, I finished back in Feb and had my cholesterol checked 2 weeks ago and it was already down to 202! So I anticipate that by next year it should be back down around my normal. So for now, I'd just watch what I eat and get in some regular exercise so the numbers don't worsen. And check them every year to make sure you're on track.

Nancy - I haven't experienced that problem but I heard it was one of the side effects. My Onc and my Primary Doc would check it every year every six months.

For those experiencing the mouth sores, try a 50/50 mix of regular liquid Benadryl and Mylanta. You can apply it with a clean q-tip to each individual site or swish with it. Just don’t rinse after.

Help please! I've been on Letrozole for 5 years now. I was going to take it 7 years but now I'm having problems with the insurance. We switched to MCR and Humana PART D on Jan 1st. They're refusing to pay for Osphena which takes care of many SEs from the letrozole for me. The price per month without insurance is $270 per month They say they will pay for Premarin which is not the same thing at all or I need a different diagnosis code from the doctor. Now the fun part begins. My MO left the practice in Nov rather suddenly. The nurse practitioner is OK I guess but she has not responded to calls in over a week now. I don't think they've replaced the MO yet. Does anyone know what diagnosis code would work so I can give her a heads up? I took my last pill last night and can't tolerate the letrozole without the Osphena. TIA

GraceB1 - as a temp fix, check the price for Osphena at GoodRx.com. Anyone can use it and pharmacies have to honor it. Osphena is $227 at Costco where I live. If you get in a pinch, you can ask your Dr to send your Rx to whatever store is cheapest near you - you can also ask for less than a 30 day supply. Play around with the dosage and pill amount on the GoodRx site. Sometimes twice the number of pills at half the dose is cheaper. You can ask your Dr to write the Rx so you get the better price.

Lanne

I have recently begun using premarin - small dab once or twice a week - and find it is extremely helpful for local symptoms. Although the pharmacist questioned it given diagnosis and hormone meds both my MO and a JHU expert second opinion doc say it is OK to use, amount very small, not systemic, and will not counteract the letrozole/ibrance combination I am on for MBC. I was diagnosed with MBC in September 2018 after going to ER to rule out pulmonary emboli because of chest and rib pain and shortness of breath. Finishing my 4th round of letrozole and ibrance now, and have had my tumor markers go down dramatically every month (at 636 now) and big decrease in pain symptoms and shortness of breath, so meds seem to be working.

Cjzach...I do not take anti hormones but there are others on this forum who have had dental issues on it. Hopefully one of them will come along and let you know. Good luck and keep us posted.

Ladies

Question , in the last year my White blood cell has went down from normal to low.,

I think I have the normal side effects of Letrozole knee, wrist and hip pain , other then that I feel fine

but low white blood count is one I had not read before .

Has anyone elece experienced low WBC while on Letrozole and if so what was the outcome .

Thanks

Anyone noticed hurting teeth and insomnia? And also im finding more and more hair on my arms and hands when i shower.

Thanks all!

I had pretty bad insomnia for the first few months. I was taking my letrozole in the early evening, after work. I've switched to taking it around noon and am having fewer sleep problems. I also take 3 mg melatonin about an hour before bed and I swear by it. I took melatonin off and on for years even before bc and it always helped.

I have definitely noticed more hair shedding. Even my hair dresser noticed that my naturally thick hair feels a lot lighter. It's not too bad yet though, in the big scheme of things.

Hard for me to believe, but today marks one year on letrozole. I was very skeptical when my MO told me that some of the SEs lessen or go away over time, but I'm finding it's true. I was miserable at first. The one thing I still struggle to manage is the joint pain, but I do the things that seem to help me: Arnica gel, CBD oil, glucosamine, omega-3, minimal sugar and refined carbs in my diet, gentle yoga, etc. I know we're all different but this works for me.

Hello ladies, I have been on letrozole + lupron shot for 2 months. Also I'm recovering from BMX+ Diep surgery that was performed 2 weeks ago. Since last couple of days l am having back pain. It starts towards late afternoon. I have appointments with PS and MO this week when I will consult with them. But want to know approximately when the SEs start for letrozole? I didn't have any issues till now. Not sure if it is because of just sitting and lying around that I have been doing since surgery ( I am walking around and doing daily activities too, but not yet as active as I was before surgery) or if letrozole SEs are hitting now after 2 months. Anyone faced such issue and what was done to remediate it? Thanks!

Polly, I have not heard that the hair thinning is permanent.

Can anyone confirm the hair loss is permanent?

Polly and Faraway, thank you very much for your input. I met with PS today and back pain could be because I am still recovering from surgery. After having back pain for 2 consecutive days, yesterday I just rested and the pain reduced. Will check with MO too and will keep monitoring it. Thanks again!

Most of what I "know" about cancer treatment hair loss is from reading personal accounts on this forum and from my own experience. Hair loss from chemo varies. Some women's hair comes back the same, some is thicker (maybe also temporarily curlier), some like me get very slow return with much diminished volume, and some (perhaps from Taxotere (sp) but not Taxol) experience very little return especially on the crown and around the face. As I understand it there are or were lawsuits about the Taxotere because of this permanent hair loss. (If I have misstated this, please post).

Hair loss from hormone therapy (AIs) also varies. Some seem to see no change, some see overall thinning, and some like me lose large amounts and have bald spots. In my own experience, my hair was stable until after one year on letrozole. I have had my thyroid checked, have taken b-12, folic acid, and Biotin the whole time, and Vitamin D as well. I used Nioxin for about a year ( but not the highest level one with a medicine in it like Rograine). I consulted a dermatologist who advised me to go to CVS and buy Rograine. There are no dermatologists in the area who "specialize" in hair loss. I don't think there are miracle cures out there despite some posters' hope. If there were they would be reported on the front page of every news paper because of all the men and women suffering from this and the $$$ value of solving hair loss. Just my thought on that. I have read on here of at least one poster whose her hair thinned on letrozole, came back thick 4 months later, and then thinned again 18 months after than and did not return. I would love to hear someone say that after regrowing hair lost on an AI, they experienced regrowth that lasted for more than a year or two. As of now, alas, I believe that hair lost on an AI is permanent even though hair lost on chemo is usually temporary.

I met with my Mo yesterday to discuss this. I am going to go on a 4-6 week "vacation" from letrozole and see if my hair stabilizes. If it does, that will be some indication that the letrozole is to blame. I will then switch to Arimidex even though my MO does not believe there is any difference to hair as to which one I take. Actually that makes sense because all AIs wipe out estrogen and that is what causes the hair loss. Nevertheless some posters report a difference after switching. Anyway, I will report back on this thread (unless my chemo brain forgets!) and let you know what I experience after stopping letrozole for 4-6 weeks. Good luck to all of us -- we do love our hair. Polly