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FEMARA

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  • tangandchris
    tangandchris Member Posts: 934

    I'm scheduled for an MRI next monday for my knees. I'm in extreme pain daily, and if I do any extra walking while shopping forget about it. I started seeing pain management in November and he's sending me for MRI.

    I know I have arthritis in my knees, but things have deteriorated in the last couple of months. At this rate I'll be using a cane soon.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541

    My chemo DC switched me off femara after hearing of all my joint pain and stiffness. I've been on it almost 2 yrs. I have to be off the femara for 2 weeks then start tamoxifen. Hoping it helps. Love, Jean

  • Tammy_M43
    Tammy_M43 Member Posts: 565

    Good luck Jean

  • tarheelmichelle
    tarheelmichelle Member Posts: 248

    April485, we must each choose our path, and I understand your fear. Your grandchildren will benefit most from a grandmother who is not fearful. Don't let cancer steal joy from you. If you stop taking a preventive medicine that ruins your QOL and the cancer returns, what happens then? You will be on a treatment that ruins your QOL. ;-) I chose to take no preventive and have no regrets. I had a 10-year old son and I needed my strength.

    Jean, I hope the Tamoxifen is easy for you. It was easy for me. The dryness in my girlie parts was the worst but I finally found a solution to that.


  • marijen
    marijen Member Posts: 2,181


    Certain Breast Cancer Drugs Tied to Blood Vessel Damage


    http://www.medicinenet.com/script/main/art.asp?art....

  • chisandy
    chisandy Member Posts: 11,408

    Well, something has to kill us eventually. And though even a first heart attack can be fatal, at least it's quick. All kidding aside, at our age there comes a point when we realize there's no going back to the level of health we'd enjoyed when we were younger: that we can no longer “fix" one thing without potentially “breaking" another.

    My pharmacist couldn't get Roxane this month, so I went back on Teva. I threw my back out several days later, but I doubt the switch of letrozole brand had anything to do with it. I had a nasty case of laryngitis and I was in a show (music, comedy, and dance revue), so I was put on a Medrol (prednisone) Dosepak, which nipped the laryngitis in the bud. My back strain/spasm occurred suddenly the day after the show closed, which was also the day after taking that last steroid pill. The P.A. at the Immediate Care Center around the block from me speculates I probably injured my back during one of the dance routine but the Medrol masked the pain. All in all, I don't regret taking it, since it brought my voice back and let me move freely when I needed to.

    With Humana Enhanced Part D, I pay $28-30/mo. for Teva or Roxane letrozole. Not dirt cheap, but cheaper than the Canadian price for Novartis UK Femara ($588 for 90 pills) and orders of magnitude cheaper than if I bought Femara at a brick-and-mortar store here ($2,700 for 90 pills).

    Peaches, when was your last DEXAScan? Medicare (and most insurers) will pay for only one every two years, regardless of whether you’re on an AI or were previously dx’ed with osteopenia or osteoporosis. Maybe that’s why one hasn’t been ordered for you. As to your MO not telling you the name of the drug he’s prescribing, that paternalistic attitude went out with the dinosaurs. Good thing his nurse doesn’t share his philosophy.

  • marijen
    marijen Member Posts: 2,181

    Why on earth would my endocrinologist say he wanted to wait on a bone density for two years when he could have told me the truth, it's not covered? Especially since I was asking for one this year. smh

  • zarovka
    zarovka Member Posts: 2,959

    A study presented at the recent breast cancer conference shows that Cymbalta reduces joint pain in women who are on aromatase inhibitors.

    Worth considering.

    >Z<

  • chisandy
    chisandy Member Posts: 11,408

    Cymbalta is a selective norepinephrine reuptake inhibitor (SNRI) antidepressant as well as a joint-pain analgesic. But if I were to take it, I’d have to discontinue Wellbutrin, an NDRI (to avoid the potentially fatal “serotonin syndrome” as well as seizures), and Wellbutrin is probably the only thing preventing me from eating anything that doesn’t eat me first, at least carb-wise. I’d also have to give up alcohol—even my measly 15 oz. of wine a week—completely. I’ll wait to see if I get joint pain—been on letrozole almost a year—before I make a decision to switch. Wellbutrin is sometimes combined with older SSRIs if those don’t work adequately, but I’m not aware of Cymbalta being added to Wellbutrin therapy.

  • zarovka
    zarovka Member Posts: 2,959

    Interesting. Do you think the Wellbutrin is helping with joint pain?

    Thank you for pointing out the potential side effects of these drugs ...

    >Z<

  • chisandy
    chisandy Member Posts: 11,408

    Not sure if the Wellbutrin is preventing joint pain—but I do have total knee replacements, which, once I fully rehabbed after both surgeries, eliminated the severe knee pain I had even years before breast cancer. Sometimes I worry that the mildness of my letrozole side effects may mean I still have too much circulating estrogen despite being 12 years post-menopausal, and that I am at higher risk of recurrence despite a low OncoDX score. I am one of those unusual patients who is more highly PR+ than ER+ (although I am highly positive for both).

  • zarovka
    zarovka Member Posts: 2,959

    I have seen anecdotal evidence that anti-depressants reduce joint pain. This was the first study I have seen. In any case, it is likely the Wellbutrin is helping. I certainly wouldn't assume the letrozol isn't working because you don't have side effects; however, if you are worried it is easy to test your estradiol levels. Ask your doctor.

    >Z<

  • pennsygal
    pennsygal Member Posts: 264

    Zarovka - thank you for posting the link to the Cymbalta study. I have a bottle of it in my medicine chest, but have not yet started it. I was on zoloft for many years, and decided to go off it after completing tx last year. Lately, I've been thinking I really do need an antidepressant; if it will help with the pain from letrozole, it's a no brainer.

  • wintersocks
    wintersocks Member Posts: 434

    I have been told today that I have high cholesterol. I know that Letrozole can cause it to be higher than normal, has anyone else had this? I know now I have to stop with the butter and cheese. How depressing...

  • thinkingpositive
    thinkingpositive Member Posts: 564

    my cholesterol came in high after 1 1/2 years on Letrozole. It was 220. I dropped about 10 pounds and it went down to 195. Very tough to lose weight on Letrozole. I ended up gaining it back so I am guessing the cholesterol is back up. I had to eat almost nothing to get the weight off.

  • octogirl
    octogirl Member Posts: 2,434

    Hi all: just checking in. After being on letrozole since April, my joint pain, particularly knees, is getting worse the last month or so. I think the cold and damp of approaching winter isn't helping (I've had arthritis for many years, and cold had always bothered me, but has gotten worse since I started AIs). Can't believe it finally decided to start raining in California and i know I should be happy about that, but, the pain is getting tough the past few weeks.

    At my MOs urging I am going to head to an orthopedist to discuss whether it is time to seriously concerned replacing one or two knees...(fifteen years ago, pre BC, I was told I'd eventually need that...)


  • Lovey222
    Lovey222 Member Posts: 4

    Also new...Had Lupron shot last week then started Femara generic Accord. Will be following

  • chisandy
    chisandy Member Posts: 11,408

    My HDL went down (though still relatively high) but my LDL skyrocketed after 6 mos. on Letrozole. And that was before I gained weight. (I just have to look at carbs now and I gain a pound). BTW, eating saturated fat and cholesterol doesn’t necessary raise serum cholesterol. Butter is better for you than margarine and eggs are fine. Small amounts of cheese made from organic milk are okay too. High-glycemic carbs (grain, potatoes, sugar, high-sugar fruits, starchy veggies) are the culprit in both weight gain and dyslipidemia.

    And Octo, do get those knees replaced. It’ll change your life. Long rehab but oh so worth it! If I hadn’t replaced mine, I’d probably be pushing 250 lbs. by now.

  • tangandchris
    tangandchris Member Posts: 934

    I went in for an MRI on my knees yesterday, the pain is almost unbearable and the fact that I can't get thru the grocery store w/o being exhausted and in intense pain is just not normal. I'm wondering if the femara actually does something to physically alter the joints to cause this pain? Meaning,does it hurt because of actual physical changes caused by Femara or is it just the SE and it "feels" like it is hurting. I"m not sure if I'm asking the correct question, I hope it makes sense. thanks

  • pennsygal
    pennsygal Member Posts: 264

    tangandchris, I know exactly what you mean. I have had Systemic Lupus for many years, and have had joint pain from that, but the pain on Femara is very different. My rheum says it's ok to take 600 mg of ibuprofen as needed, which does help, but with the colder weather it isn't helping enough.

    As for the cholesterol, I'm scared to even ask!!

  • tangandchris
    tangandchris Member Posts: 934

    Well, I have the report on the knee MRI and it doesn't look good at all. There are several issues it looks like, but the biggest stand out is Grade 4 Chondromalcia patellae in my right knee and Grade 2-3 Chondromalcia in the inferior patella on the left. *sigh*

  • Momine
    Momine Member Posts: 2,845

    Tang, I had that in my 20s and it was excruciating. PT is the best way to deal with it, in my experience.

  • kicks
    kicks Member Posts: 319

    I've been on Femara then letrozole for 7 yrs and can't say I've had any SEs so far.

    Arthritis - have had upper back arthritis for about 15 yrs. Didn't have any idea I had it until I had to have an upper body X- ray for some 'strange' reason I don't remember now but not related to back and it showed up - had no pain at the time. It has gotten worse over the years since and does hurt sometimes now. It would have progressed anyway in the years since then so I can't blame letrozole with the progression. I have since been told I now also have arthritis in hands and feet but no pain so don't worry about it. My upper back does not 'like' winter as much as it does summer but I don't directly chalk that up to the cold itself being the 'culprit' but because of the brutal cold here I am not as active outdoors during winter though I do make it to the gym several times a week so I 'blame' being less active during winter. Winter (cold) also has a similar effect on my LE as it's more of an issue in winter than in nice hot summer. (The exact opposite is true for other's LE.)

    Cholesterol - my total cholesterol is very high - has been for 20 yrs so can't blame letrozole for it. It has been basically stable over that time frame (is checked every 6 mths when I see my PA) so don't worry about it is as the 'good' cholesterol (HLD) is very high but the 'bad' cholesterol (LDL) is very low. I'm just weird - what can I say?

  • AmyfromMI
    AmyfromMI Member Posts: 115

    MammaRay, yes. I did for the first couple of weeks. I'm in my second month of Femara and no more nausea

  • aoibheann
    aoibheann Member Posts: 259

    MammaRay No I didn't have nausea.

  • stellamaris
    stellamaris Member Posts: 313

    i did not experience nausea, but I have no appetite at all. I have noticed that the first few months I had a lot of hair loss, and now that has stabilized. Oddly, my hair, finger and toe nails grow very very slowly. My hair is much thinner than it used to be. I am hoping that this extends to the aging process. Maybe I won't lose the 5 years I am on letrozole, and when I hit 70 I will still be physiologically 65. Wouldn't that be coup! Lol

  • Tammy_M43
    Tammy_M43 Member Posts: 565

    Stellamaris, we can only hope!


  • Shelly52
    Shelly52 Member Posts: 133

    No nausea for me but I also have far less hair than I used to. ☹️ Looking for a remedy for this. I'm trying Jerrosil per my dermatologist's recommendation and Biotin. No change in hair so far but I have noticed far less joint pain which is another Jerrosil benefit.

    Anyone have hair growth suggestions

  • Nash54
    Nash54 Member Posts: 699

    I've experienced the hair thinning too....hope this is as thin as I get....I've got 3 or possibly 8 more years on Letrozole. Most noticeably at the hairline.

    When I first began Letrozle I experienced some dizziness and just an "off" feeling. Seemed to go away after a couple of months. Very little joint pain just general stiffness that I think comes with aging.