Has anyone quit or reduced dosage of the hormonal therapy?
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Lafayette,
My "vacation" began in June and I will try the new AI in the beginning of November. My MO said studies have shown people can take breaks from AI/Tam without harm and sure enough I saw a recent study to that effect. Mine is perhaps a little long of a break, but I want to wait until after a hiking trip to start the AI in case I get joint pain. I'm nervous about the AI but she said if it was bad I could try a different one or even stop; and she says why not just try one and see.
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Thank you Abigail for your reply. I did stop taking the letrozole and feel worlds better. I will have faith that God will protect me and the cancer won’t return, God bless everyone dealing with breast cancer
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Momwriter,
How are you doing? I've been on a roller coaster of pain and misery since June 2020. I've tried 4 different AIs. I'm on letrozole now, which seems to be the least evil for me, but still miserable.
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Jinx27, I just saw your comments from a while ago. I start using CBD at nighttime, started with a drop for a few days, and slowly went up to 1ml. I start sleeping well but 1ml made me feel a bit high so I went back to .5ml. Then I replaced it with Seinfield before bedtime and I don't really need CBD
). This is the brand I use:JRNJ, I'm glad t see you back and I am sorry you are still having difficult time with letrozole. I feel better since I changed the time of the day from nighttime to morning. I take it with cappuccino in the morning and a big glass of water. I guess it does flush the medication
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Hi JRNJ, I'm sorry to hear it's so hard. Maybe try tamoxifen? - it was really tolerable for me and I might go back if this AI business doesn't work out.
I"m about to start Arimidex. Since I'm on nothing now I'm fine. I realized half my symptoms were not tamox but just menopause. But the neuropathy I started to get after 8 years on tamox is gone now that I've stopped. So that's why I'm not going back now. But I'm dreading starting the AI but need to start. Maybe tomorrow. I just hate the idea of accelerating bone loss or getting achier - I'm 56 and I like to run and hike. I also don't want my hair to thin anymore than it already has- it still looks okay but I have fine thin hair anyway-- and feel it's gotten thinner in the last year for some reason. I don't think I could take noticeable loss- .
I think I will start with half a dose, maybe take Claritin like some say here, and arnica and maybe I'll try the CBD. I take a bunch of supplements anyway so I can try to adjust. If I hate it I will try another or just go back to tamox or do nothing. My MO says it's just insurance/due diligence. So I'll let you know.
Lilly I like the idea of taking it in the morning with water and cappuccino!
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Momwriter, since you've said you tolerated Tamoxifen, I was wondering if you had to have any additional tests/monitoring while on it? I've tried three AI's, with the most recent being Letrozole. I had unbelievable hand and feet cramping on Letrozole that was a deal breaker. I was on it, then off it, then on it again, so I know with certainty that it was the cause. It was miserable and I couldn't get any relief from it. Anyway, my MO said our last resort would be to try Tam, but he admitted that he's hesitant to put me on it and he doesn't feel it's as effective. My cardiologist also said I'd have to be monitored more closely if I choose to go on Tamoxifen. I have to admit that the hesitancy makes me nervous. Did anyone mention to you different protocols for Tam vs AI's?
For now I am enjoying my break. I can't believe how much more clear headed and productive I became when going off the AI's.
JRNJ, so sorry to hear that you haven't been able to get any relief. It's no way to live. I saw that LillyIsHere mentioned CBD oil. I recently asked my MO about it and he said his patients have had mixed results with that, but what would really be helpful is med. marij. It's legal in my state when prescribed, but I'm not ready to go down that road just yet. Have you thought about it (assuming it's legal where you are)? I'd be pretty desperate for relief if I wasn't able to go off the AI's.
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Hi there, I'm also considering to stop using Tamoxifen after almost one and half year after surgery. Well first I want to share that I'm a male and I was diagnosed 2 years ago with breast cancer. After the surgery I started taking Tamoxifen but after reading one article from over 10 years ago...that's the only reaserch I found about men taking Tamoxifen. I'm seriously considering dropping this for maybe Arimidex..because of the side effects that I'm experiencing
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Hi Younis. Welcome to the forum. I’m a guy who has been on Tamoxifen for seven years now following treatment for breast cancer. This drug is considered very effective for men, more so than Armidex. Have you spoken to your oncologist about this?
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Hi there,
As for the effectiveness of Tamoxifen i didnt claim otherwise and im not in a position to suggest which medicine is more effective or better. My only concern at the moment is the side effect of the Tamoxifen on me. And i must indicate again on me, because different bodies my react differently to certin drugs. As for your question i did talk to my oncologist about the side effects that im suffering from and he pointed out to me different directions to help coupe with these symptoms. (like alternative medicine to deal with the hot flashes for instant.
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Hi all,
Has anyone had severe bone pain in the forearm and wrist while taking Aromasin? It’s debilitating, and Aleve doesn’t put a dent in the pain.
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PrincessButtercup, are you doing any exercise to flare up pain in the forearm and wrist? I get these pains when I lift weights or overusing my arm.
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Lilyishere,
Thanks- No new exercise. I walk on the treadmill, but that’s it. I can type with my R index finger.
This is my third anti-estrogen med since 2018, and each has had different side effects. Tamoxifen affected my hips and knees, Letrozole gave me pain in the feet and knees plus UTIs, and with Aromasin it’s my arms and hands plus urinary incontinence. This pain is unmanageable, though. Will see what my MO says.
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Hello All,
I started Letrozole yesterday. Ouch. I had a headache and aches in my back, shoulder, and knees. I also had nausea and issues sleeping through the night. I did lower the dosage today to allow my body to adjust to it. I am going to continue taking it until I see my MO again and talk to her about keeping the dosage lowered. I read that a lower dose provides the approximately the same benefit. I will have to confirm it with my MO.
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Wondering44 - Don't be too sure that your oncologist will confirm that the lower dose is OK. I've read that lower doses are also essentially as effective as the 2.5 mg a day, but my oncologist insists that is not the case. I even showed her the studies I looked at. She seems to think I'm a bit of a crackpot. I told her that I'd read on this forum where other women say their doctors told them every other day would be fine. She told me that no physician under any circumstances would suggest that someone take an every other day pill. (It is formally recommended for those with liver disease, although that's not my issue, but wonder if she is aware of that). Consequently, I have gone rogue and in spite of what my oncologist says, I take it every other day. She has accepted it and we have agreed not to talk about it anymore, because there is simply no common ground.
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ThreeTree, tell you MO that in Femara's website, it does still say that if harsh in the liver, letrozole can be taken every other day. If it is hard on other parts of the body, why can't be taken every other day?
2.5 Use in Hepatic Impairment
No dosage adjustment is recommended for patients with mild to moderate hepatic impairment, although Femara blood
concentrations were modestly increased in subjects with moderate hepatic impairment due to cirrhosis. The dose of
Femara in patients with cirrhosis and severe hepatic dysfunction should be reduced by 50% [see Warnings and
Precautions (5.3)]. The recommended dose of Femara for such patients is 2.5 mg administered every other day.
https://www.novartis.us/sites/www.novartis.us/files/Femara.pdf
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Lilly, thanks for the suggestions, but I'm pretty certain she would say that since I don't have liver disease it is a moot point. She won't hear of anything except what the FDA has approved, and that is 2.5 mg unless you have advanced liver disease. She seems to think that since she has a medical degree and I don't (as she pointed out) and that the FDA approval is for 2.5 mg a day, there is nothing else to discuss.
I've read one pharmacy study that suggests that the older we get the less we clear drugs and that older women at least (I turned 69 just before Christmas) the 2.5 mg might be too much. There was also a study done by the Mayo Clinic and a place like MD Anderson (not totally sure about that, but high quality places) where they tested different doses and intermittent doses and got essentially the same effect for everything above .5 mg a day. I think 1.00 mg a day was a little better, but everything up from there didn't seem to make much difference in the amount of estrogen decrease. I also read something by Novartis that I can't locate right now that said 2.5 mg. per day may well be a "borderline" dose and just too much for some. It could be the tipping point dose where some begin to experience adverse events.
The interesting thing about the Mayo clinic study though, was that even with the lower and intermittent doses, there did not appear to be any change in side effects. It seems that if your estrogen levels are lowered to a certain point, no matter how much of that stuff you take, you're going to get low estrogen related side effects.
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Princess Buttercup,
My pain was from both AIs, anastrozole and exemestane, as well as tamoxifen. Both left and right thumb joints, wrists, and forearms. The only thing that helped was stopping the medication.
The intense pain diminished over about a month and although I've been off the drug for more than a year, I still have lingering pain in my left hand.
For some of us, the side effects of the hormone blockers, either AIs or Tamoxifen, are severe and long-lasting.
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ThreeTree,
I read some of the same articles. I lowered my dose to .625 this morning. I will see how I tolerate that and go up to half a pill a day if the SEs fall off.
I know my MO will likely not agree; however, she isn't the person trying to sleep or get through the day with the SEs.
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Wondering44 - Good luck with your plan. After what I read, it looked to me like a person could take half of this pill (1.25 mg) every other day and still get the desired amount of estrogen reduction. That would be the .625 every day that you are talking about. The half life of the pill gives you about 48 hours coverage from what I understand.
Even though what I read suggested that 1.25 every other day might be enough, I haven't been able to go that "off track" at this point, but I've considered it. I'm trying to meet this oncologist half way (no pun intended), so that's what I'm doing. I never have wanted to switch up to the full dose after starting with the every other day thing. Who knows, it might work for you if you just gradually work up to the full dose. We just never know until we give it a shot.
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A little over a week ago I quit taking Letrozole. Just wanted a break because I'm tired of the leg cramps. I messaged dr office to let them know. Got a call saying they wanted to move my next appt up to discuss this. My next appt is 2/3 so I declined to change it. Woman got snippy and said "so you are refusing to change your appt? I will send the dr that message". I said fine see you in February. Jeesh, I hardly think a break of a month is going to do much harm.
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KID1919 - You know I recently saw a study (sorry, don't have it handy and I have to leave the house soon), but it looked like a decent study by reputable people, and what they did was to compare people who took the 2.5 mg every day for 5 years with people who took the 2.5 mg. every day for 9 months a year with a 3 month break in years 1-4. For the last year (the 5th year) they all took the 2.5 mg every day all year long. I can't remember how far out they went after that for follow up (5-8 years?) and at that point at least they found no difference in overall survival. They concluded that a 3 month break each year, except the last, might be feasible.
It really does seem like this 2.5 mg per day for everyone for years and years just might be overkill for many.
What a nasty medical person you encountered! These days I try to cut them slack when they are like that and chalk it up to Covid stress, but some are probably always like that.
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I don't know if the pains I felt this week are from the Letrozole. My listed SEs are not accurate since I tested Covid positive today. I want to post only accurate descriptions of any SEs I experience from any treatments I do for cancer. I won't have accurate information until I am better form Covid.
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I quit, I am very scared because I’m high risk but I tried two I have osteoporosis my joints were locking up and yoga, cardio and otc was not helping at all. I’ve also had to have my teeth taken from breaking and have had compression fractures in my spine and spinal surgery. I’m scared every day and I don’t feel great about it, I want to be able to get through the days.
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Wondering44 - Real sorry to hear about your Covid situation. Get well soon!
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I started taking the letrozole 2.5mg three days a week. I am post menopausal. When I took it every day for the first month, my knees were killing me and I was so foggy I could not concentrate on my work. That is not good for an accountant. Just sayin'.
Wondering44 - get well soon!!
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Lalbo - In case you're interested, here is the study that I saw that concluded that some of these lower and intermittent doses might be fine. One of the groups in this study took Letrozole MWF, so 3 days a week, as you have suggested. I've considered MWF for myself, but part of me is a bit scared to go too off the routine schedule, so I continue with every other day.
https://pubmed.ncbi.nlm.nih.gov/26667449/
This study was done by some at the Mayo Clinic, University of Arizona, and some other cancer centers, so I think should be fairly worthwhile. Just one study of course and not the definitive word, but highly suggestive of a place in all of this for lower and/or intermittent dosing.
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Thank you Three Tree for the info. It's a QOL issue. Besides the pain there is the brain fog, morning sweats, depression. Altho the depression (which is not a new thing for me) could just be everything not good that has occurred in 2021 and 2020. I'm on the fence about starting an antidepression med again...sometimes they can make me feel nothing which isn't pleasant. I am telling myself to be thankful for what is good in my life. So, I will talk to dr in Feb and ask about a 3 day a week regime. I am starting my 3rd year on AL this month.
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PS. Wondering44, get well soon!
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ThreeTree - thank you for the info! I will definitely read it.
My MO told me he wouldn't recommend chemo for me, based on a study done 5 years ago stating the benefits of chemo did not outweigh the damage and that the type of cancer I have did not respond to chemo like others (my personal thinking is why would I do that to my body if it wasn't beneficial). My oncotype score was 7, so that's very low. That was FINE by me! I wish my RO had researched radiation effects as much as the chemo. I've read, after I've had radiation, that there are test that will tell if radiation is beneficial based on a radiation oncotype test. There are no do overs and hindsight is 20/20.
The point of all that was to say that there are more recent studies done that people may not be aware of that would help people in their decision making.
Everyone's cancer is personal to them and they have to make their best decision.
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Lalbo - Glad the study looks of interest to you. Interesting that you did not get chemo in your situation. My situation isn't exactly the same as yours, but I had IDC, 5.5 cm, no nodes, ER/PR+ and HER-. They never did an oncotype or Ki67 for me, so I don't have those scores. I asked the surgeon if they had done a Ki67 and he said that the institution I go to stopped doing them and that they only really ever used the score to determine if a person would need chemo or not. He said that in my case it was a "no brainer" that I would need chemo, given the size of the tumor, etc., so that the score would have been irrelevant anyway. I did have some response and the tumor went down to about 4.5 cm at surgery. It seems that our situations were close enough that we would have had essentially the same treatment recommended, and I had lots of chemo. I would have loved to have been able to avoid it if possible.
Also, I never heard of anything like an oncotype for radiation! I've been reading on here since about 2018 and I've never seen it mentioned. More interesting ...
Re your brain fog and being an accountant; yes, I can really see where that would be probably impossible. I am no accountant by any means, but my work does require me to keep some basic bank statement/checking account type info for a number of people, and I also have to get that info ready and formatted for court reports with deadlines, etc. I am finding that I simply cannot do it anymore and am looking at retirement or a dramatic scale back to part time that doesn't include the "numbers" part of my work. Sadly, I think it is primarily the Letrozole that is the big problem here. I hate to think that I would retire and then 3 years from now (been taking the AI for 2 years now), I stop taking the pill, and my brain goes back to normal. I think I could really regret retiring at that point, because there is a lot about my job that is enjoyable and not all that difficult.
I can't imagine being an accountant with this brain fog/cognitive issue. Yikes! I really hope something works for you!
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