Breast cancer

[Pixiemax19]

Hi folks, I was diagnosed with breast cancer in January of this year. My first surgery removed a lump and 2 lymph nodes, the second was to take more shavings. As a result of that it found more cells which led to having a mastectomy . At my follow up appt yesterday they've decided to put me on Letrozole, which I will start today. I'm worried about side effects as I have fibromyalgia, I don't take any medication for this as the side effects were horrific.

[HbbM]

even though I’m new to all these drugs I was diagnosed over 2 years ago. One thing I’ve learned in a short time is that no one knows 1) if the drug will work for them and 2) if the side effects will be anywhere from nothing to severe. We just don’t know until we try unfortunately. It might be the magic bullet for you or you might have to use something else. You just wont now till you try.

Welcome to the club no one wants to be in but is full of some of the strongest bravest people out there.

[Memories]

Hi, I was diagnosed 4 years ago. I have been on tamoxifen since. I also have fibromyalgia which like you don't take any medication for. I have had no side effects from the tamoxifen which has impacted my fibro. We are all different though and all medication effects us differently. I wish you all the best. x

[Beryl71]

I've had no bad effects.But after my primary tumour I was on tamoxifen, at that time about 30 years ago I was pre menopausal and had hot sweats and sleep issues. I have had vaginal issues on letrozole for which I have various potions that have resolved it. Good luck. X

[Onesource in reply to Beryl71]

Hello Beryl171. I too have had vaginal issues since being on Letrozole. I need to know the potions that have resolved it if you don't mind sharing!

[Beryl71 in reply to Onesource]

I use hyalofemme, which is inserted every three days, plus sylk moisturizer. My Macmillan nurse was lovely and gave me various samples to try. Now I get them on prescription. Good luck. Xx

[Lakincaid]

Everyone seems to respond very differently to these meds. I was put on anastrozole (sister to Letrozole) earlier in my treatment. I had a debilitating amount of joint stiffness and pain. I am now on letrozole and the stiffness is so much better. Just know that there may be options if one medication has side effects that you feel you may not be able to live with. I don’t have fibromyalgia but do have an RA diagnosis. Best wishes ❤️

[Hidden]

Hi I have been on Letrozole for 2 years .and Ibrance

l get a stiff back ..bit sore Myself take 2 tylone extra strength

I can do this 4 times a day it's safe was told

Works

Best to keep moving

Excersise helps

We need muscle for our body ..sitting is not good on Letrozole

All the best

You can do this

LIVE STAY HAPPY😊

[PJBinMI]

I was diagnosed with bc in 2004, with bone mets only for the first 15 or 16 years. Letrozole was the first treatment (along with Zometa for my bones) and I got nearly five years from it. The side effect I had was hot flashes--red face, obvious sweat pouring down my face. My wonderful wise old then onc prescribed Effexor Er (long actibg) for that and it turned many times a day hot flashes into a very few times a week "warm surges" that were very manageable. But we don't all get hot flashes ir any of the other side effects. If you develope side effects, don't wait for your next onc appt! Call them. My oncs and their nurses have been very good at returning phone calls and getting prescriptions to the pharmacy I use, often/usually the sme day. And if Letrozole is just too hard to be on, there is a very similar drug that you can try, Arimidex. There is much to be hopeful about!

[Godbeforme]

Ikeep coming back to edit but I wanted to add that the letrozole takes all the estrogen out of your body so that's why it causes a kind of arthritis and stiff joints, as people I believe anyway, people experience that when the estrogen wanes in their body with old age; please correct me if I'm wrong. I also wanted to tell Pixie that I remember reading that some took claritin D I think it was, and that for some reason, this allergy drug helps alot with any aches and pains from letrozole. I also wanted to say I took Letrozole for over 5 years before it turned on me and I plan on trying it again after a 42 day rest ... ok now I think I've covered everything SAID NO ONE EVER on this hideous journey!

I had lumpectomy in 2013 4 c.m. tumor removed and I think 8 or 9 lymph nodes. I was given radiation treatments only, 31 I think, targeted of course. In 2018, I slipped in the kitchen and fell on my rear end, legs straight out in front of me, and on a wooden floor, and my femur broke above my knee. THAT was when I knew it had spread to the bone and it was confirmed to be MBC stage 4 ER pos HER -. I wrote all that to say, never have I had any swelling in my right arm where most of the lymph nodes were removed, thank You Jesus! in 2018, I was put on letrozole and ibrance. Last month, the letrozole started causing very high blood pressure and horrible acid indigestion, so I had a comedy of errors in finding this out as it fell into the freezer and letrozole is no longer good after being frozen, thus I quit it until I could get fresh and lo and behold my indigestion and high blood pressure went away. I went from 200 mg. of bp meds a day to 25 mg! and no more indigestion. I will get it filled and start it again after taking 42 days off from it and see if it affects me in the same horrible way or if my body just needed a break from it. Anyone else take the "42 day break" from letrozole and it because effective again? there was a trial for that very thing, but I don't keep notes and I'm like a goose, I wake up to a new world everyday! I am writing to let you know my experience and that I love the ibrance as I'm on it again. In 2018, I had started having chest pains and I blamed the ibrance, now I think it was the Letrozole. Those of you who don't take letrozole, what is a good alternative, I am asking in case it makes me so very ill again. One thing I know for sure, cancer is on again ... off again for many of us but we only have ONE HEART and personally, I will not take any pill that threatens my heart or blood pressure/arteries. Thanks for listening, I know I've already said much of this but not at this particular time, hope this helps you in some way, Pixiemax. It's been 10 years and I'm still kickin' ... no aches or pains most of the time and I even have a gym membership but old age has brought much laziness and all I've done so far is register at the gym LOL ... it's a perk with our health insurance. Today I asked hubby if he'd go with me to check it out because it's World Gym and the man hates exercise, as do I, but I thought if we went together maybe the fitness bug would bite him in the arse LOLOL AND ME TOO, I need a bite there! God bless you and heal us all in Jesus name, amen! xoxo

[TammyCross in reply to Godbeforme]

I couldn't tolerate letrozole -- hips hurt so much -- so oncologist switched me to anastrozole. Still pain, but not so bad. I tried the name brand, Arimidex. That wasn't better, so back to the generic. (I have a feeling the letrozole was working better, however.) I believe exemestane is the other alternative. The MSK oncologist from whom I got a second opinion said she would have tried exemestane before letrozole because it causes fewer side effects. (She also said it didn't matter, because eventually I will go through all of the options!)

[Godbeforme in reply to TammyCross]

Thank you, may try the arimendex as I've never taken that. Ireally don't know what to do because I have an oncologist whom I just love but everytime I go (monthly), he always starts off the conversation with, "so you're taking verzenio?" and I have to remind him that no, I've never taken verzenio, that was the first thing he recommended but I opted for ibrance. How can I trust one who doesn't even bother to know what medicine I'm on. The truth is, I prefer him to others who tend to overtreat, he is my script writer ... wow that sounds evil, I don't mean it to be, it's not like I need any pain medicine because I just need the cancer meds and I want it MY WAY. Thanks for your input, I will try the letrozole again after a 30 day break and then if it makes me sick again I will ask for a change to arimendex (sp). God bless you and heal us all in Jesus name, amen! PS sometimes I read what I've written and I can't believe I wrote that, evidently I use this as a venting board as well, please overlook my outbursts, and know that they are theraputic for me ; I would never want to hurt anyone's treatment and/or feelings.

[TammyCross in reply to Godbeforme]

I just read through your post that started this and it was very informative. Vent away! Yes, I agree, anything that eliminates estrogen could cause pain in joints. But then -- when I was on an oral SERD in a clinical trial, I accidentally had the FES and I had zero estrogen, no cancer, and NO PAIN. So there must be something about the AI's especially that affects joints. Someone has said here that it dries up synovial membrane, hence synovial fluid in joints. That makes a lot of sense. I have pain in shoulders and chest and arm muscle or ligament. You need synovial fluid for fascia to slide over muscles, so that explains the chest pain in addition to the joint pain. I looked up how to increase synovial fluid. It seems that everything that helps the body produce collagen and synovial fluid also helps cancer cells grow! In fact, people with mbc, especially in lymph nodes (as I had) have a shorter OS if they have high levels of hyaluronic acid in their cancer. (Hyaluronic acid produces synovial fluid and collagen. They inject it into arthritic knees and people put it on their face to reduce wrinkles. It works. But we should stay away. Darn, darn, darn.)

I was going to ask why you love your oncologist if he can't remember you are not taking Verzenio, but you explained. My oncologist couldn't remember who I was for 2 years, but she always read my chart out loud at every visit. It was very boring. I hate slow readers, and I know my history, but now I see from your story it was probably a good thing since it reminds her what she has prescribed. I also have to stay on top of things because she forgets what she says at every visit. I remind her and she checks the chart again. (Oh, did I say that? You mean I have never given you a genomic test? Oh, I see I haven't...)

You want to ask for anastrozole, the generic, not Arimidex, the brand name. Arimidex is more expensive. However, I found a website where I could buy it for $60/month, not using insurance. I don't see why you don't go there right away, instead of back to letrozole, which you already had a bad experience with. Just try it. They are interchangeable. At least, to my oncologist and my second opinion onc at MSK.

[TammyCross in reply to TammyCross]

Oh, and try to find some kind of exercise that is fun for you and your husband. It helps retard the cancer, improve mood, and ward off dementia. Can you walk someplace nice? Start bird watching or tree identification? Roller skating? Bike riding? Some people like yoga (I don't). I take silly dance classes for old people. Really fun and being in a group is motivating. And the music helps take your mind off exercise. There are free classes everywhere.

[Godbeforme in reply to TammyCross]

Your post was so informative, thank you so very much for taking the time! I crave collagen, my lips are wrinkling up and getting so small I need a magnifying glass to find them (not really but close LOL). I remember having a blood test for estrogen back when I was 48 or 49 (I'm 69) and the doctor said I had so little in my blood that it was practically non-existent, but then the fatty tissues of the breast and elsewhere in the body make it after change of life which I went through at 50 ... so my thinking now is, if it's contained in the fat does it NOT show up in the blood? It's so nice to meet a sister sleuth, trying to solve this great mystery. It blew me away when you said you had no estrogen and NO PAIN! I always thought the letrozole was the culprit BECAUSE of it stealing my est. and thanks again, I will order anastrazole when I see my onco on May 2nd I think it is. in the meantime, I will see how the labs turn out with just the ibrance for a mo. ... last labs showed a decrease in the CA 27-29 and CA 3.15, both in the 300's still but heading the right direction. I thought it might be because all the indigestion left, it was really miserable and as soon as I'd lay my head down at night here come all this stomach acid up in my throat and I thought it was my hiatal hernia and I do have one but it was the Letrozole making all the stomach acid I now know .... grrrrrrrr ... can you tell this is making me CRAZY? ha ha I just told hubby this morning, as long as you feel crazy you're ok, because true crazy is hidden from it's victim ... innit? my theory anyway la la la la la God bless you and heal us all in Jesus name, amen! <3 xo

PSS I felt the lump in the shower in 1990 and had a test done and they said it was just lumpy breasts. Fast forward to 2009 and it was in the same exact spot ... so it was ok for almost 20 years then turned cancerous and started growing. I knew something was wrong because it was fever-hot and tender, really painful, so I got my behind down to UTMB to have an mammogram and sure nuff .... cancerous tumour!

[TammyCross in reply to Godbeforme]

I think the estrogen produced by fat does show up in the blood. Not sure. Just not so much. I think that bit of estrogen left is why those of us with ER+ have to take something to suppress estrogen. And the oral SERD was best at that. Yes, I hadn't put it together that I had no estrogen and no pain, so it is not just the aging effects of AI that gives joint pain.

[Godbeforme in reply to TammyCross]

I just found the senior center in town and they have aerobic classes monday, wednesday and friday for seniors. not sure if I mentioned that, now to get off my lead derriere! lol

[TammyCross in reply to Godbeforme]

Do it!! It is fun -- but then I do like to move. Joining a class is best, and make friends in the class, and then they will want you to show up. The endorphins will make you addicted.

We are lucky that we can still do that kind of thing.

[Godbeforme in reply to TammyCross]

Yes, maybe THIS aerobics class I can keep up with HA HA. <3 xoxo

[TammyCross in reply to Godbeforme]

Classes for old people are best. Sometimes too easy, but they accommodate all levels and infirmities. I was taking real dance classes and, once I went on anastrozole and got the painful joints, I found there was too much I couldn't do quickly and well. The teachers in the class I need to leave for right now! know about my mbc and side effects, and they can tell when I am hurting. It is outside under the trees, double benefit, with a bunch of white and gray haired women and a few men. We are getting pretty good at this.

[jersey-jazz in reply to Godbeforme]

Why would you like to go back to Letrozol and the likely scene of the crime? For me, Letrozole nearly took me down.

[Godbeforme in reply to jersey-jazz]

I guess I am insane LOL ... thinking that this time, after 42 days off, it will be DIFFERENT! isn't that the definition of insanity? In my heart of hearts, I want to see what the ibrance alone does for me, I am in the valley of decision and waiting on the green light from God on which way to go. <3 xoxo

[TammyCross in reply to Godbeforme]

As Kokopelli always says, it is the aromatase inhibitor that is the heavy hitter, depriving cancer of food to grow on, not the CD4/6 inhibitor. That helps, but the other is the essential one.

[kokopelli2017 in reply to Godbeforme]

TammyCross is correct...lol. I do always say the AI's (and estrogen blockers in general) are the heavy lifters in the ibrance/letrozole (or similar AI) combo. the letrozole is the 'worker bee🐝'. the ibrance is the 'helper'. I am 5.5 years in and have only ever been on an estrogen blocker. letrozole for 5 years and now on fulvestrant. I realize my cancer is presently indolent....aka...lazy! unfortunately where is did hit me....it hit me hard in my spine. I am mostly immobile and quite deformed and in a ton of pain....despite the pain meds. presently weighing the pros and cons of a possible major spine correction surgery. the decisions we have to make....yikes!

btw....if you experienced such bad side effects....I would not go back on the Letrozole. I would try a different AI like anastrozole etc. just my thoughts. of course it is your decision to make. good luck with all. carole💛

[kokopelli2017 in reply to Godbeforme]

hi. Pixie was diagnosed with Primary BC and has not been diagnosed with MBC. her oncologist wants to put her on Letrozole as a preventive. so no ibrance, or other similar meds, for her. just wanted to clarify. XO💛

[Andersl]

I understand your concerns. Apart from cancer I have another condition to manage. This too is affected by medication.My advice would be to let the consultant know your concerns.

Many people have more than one condition alongside cancer He may have come across this more than once before. And he may be able to reassure_advise you.

All the best xx

[TammyCross]

It sounds as though you don't have stage 4, metastatic bc. There is another group for people dealing with primary cancer, who are put on treatments as a preventive. They may have more relevant experiences and insights for you.

[Liessie2014 in reply to TammyCross]

I was thinking the same as you , there will be more knowledge on the primary site