Has anyone quit or reduced dosage of the hormonal therapy?
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AvaG, I know you will think what I say is "Do as I say, not as I Do," but please try not to. I would highly recommend anyone with a grade 3, especially someone who needed chemo, to at least try endocrine therapy.
I stopped Tamoxifen after only a few weeks with my first cancer (IDC I cm grade 1) in 2003 and I only took Letrozole for 6 months my second time. (I.4cm ILC grade 2, same breast) in 2019. My reasoning is undoubtedly somewhere else on this thread, but if you want my reasons I can PM you.
Everyone is different, their Dx is different. That said, as someone who absolutely agonized over taking or not taking an AI, I suggest to you and anyone else considering hormone therapy to read through comments on this site, TALK with your doctor, ask all questions you might have, no matter how insignificant you might think it is. Then consider your cancer. Grade 3 is aggressive! That is a fact! That is a big one, but also consider the size, type, your age etc. You don't need to rush to take it, but given the fact that you had a grade 3, would be reason enough to take it. Had my cancer been a grade 3, I would take the AI. Everyone is different and reacts differently. You won't know how you will react unless you try it.
Hope this helps!
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hi have been wondering how you are doing--I have been on letrozole for 3.5 years and due to the biology of the tumor--grade 3- 2 positive nodes will need to stay on it longer than 5 years- other than am joint stiffness that resolves with moving around-and some insomnia have done fine with it and am grateful it is available - is my best chance after surgery, chemo,rads --to stave off a recurrence- just marked 4 years - and am doing fine--I feel this little pill is my best friend going forward--it sits right next to the coffee maker and take it every am-then forget about it----please avail yourself of every option to reduce your chance of recurrence--hugs to you,C
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Jinx27 thank you! I am in delama to start CBD oil for insomia.
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I was on Tam 8 years and am on a break since June. Side effects were tolerable but I wanted to see what was a side effect and what is my new menopausal normal. (Was 47 at DX). I had to take Magnesium regularly for muscle cramps and constipation. Vaginal dryness itchiness other issue. Hot flashes didn't bother me much- were more like warm flushes. I felt some prickling in feet in the more recent months and upped my B vitamins and I think that helped- but it made me want to take a break. My MO wants me to try to take an AI for a couple of years for due diligence, so I will start that in the fall. Am deciding whether to start in Sept or wait until after hiking season in New England. I am VERY nervous about bone density and will do that test first. I'm also nervous about joint stiffness. I do feel I could go back on Tam for 2 years now that I've had a break and I might do that If I don't like the AI.
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Jinx27: I tried some CBD for insomnia but it had the opposite effect. I was jittery and awake all night. Did I overdose? Do you have a brand that has worked for you?
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Kamboka, I have that reaction to Nyquil. Awful!. I have been taking melatonin 300 mcg. It has helped me .Also, I decided to try taking letrozole every other day. Just started that this week.
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KID1919 - I'd love to hear if you notice any difference after awhile of taking letrozole every other day. I've done that from the get go, so can't personally compare it to every day dosage. I have always had side effects, but lately after 18 months on this drug, I am starting to notice that my side effects do seem worse the day after I take the pill as opposed to the day after when I don't.
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ThreeTree, I will let you know. I have been on it about that long too.
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KID1919 - Thank you!
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Initially when I was trying different brands I was jittery too, it all depends on the strain of CBD used to make the oil. Some are more Indica (Sedating), Sativa(Uplifting) or a Hybrid of the two.
I stumbled upon an excellent brand while at the beach, went into a shop that carries Indica dominant oil that goes under the tongue. It even has a little peppermint flavor too. https://www.rxremediesinc.com/product/best-sublingual-cbd-tinctures-full-spectrum-peppermint-indica
I would take some sublingual drops and then vaporize dried CBD and be very relaxed in about 30 mins. Let me know if you want details on the dried CBD leaves too.
While in chemo years back, I invested in a ceramic vaporizer for vaping MJ. Now that Im working, I use CBD only for relaxing, MJ is too strong for me and leaves me feeling groggy.
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my doc advised trying melatonin first for insomnia-gave me diarrhea each time-- a common side effect- so she recommended cbd--went to legal dispensary to get after due diligence and research and talking with the dispensary staff--tried twice and same GI effect again==also a known side effect-soooo I lie awake at 2am a few nites a week----guess better than having to stay within a few feet of the bathroom for several hours--ugh---glad you are getting some relief anyway--,kaylie
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Melatonin also has the opposite reaction for me. Someone said I was taking too high a dose. It also give me weird dreams. I'll try the Indica since I didn't know about the different types of CBD. Thanks for sharing.
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CBD may have some ant-cancer properties as well.
Taken together, CBD has been consistently shown to be efficacious in many breast cancer cells and mouse models when it comes to its anti-proliferative and pro-apoptotic effects, while the mechanisms of these effects may vary. At this point, there is an urgent need for clinical trials looking at the anti-tumor effect of CBD for breast cancers, as this seems to be the next logical step in the progression of developing CBD as a treatment alternative for breast cancers. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7693730/
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kaylie57, It took me thinking about your post for the light bulb to go off in my head re: (diarrhea). I have experienced that with the Melatonin too I think. I looked this am and it contains Dextrates which I think is some type of sugar. I have been blaming that problem on other things/meds. But thinking back I do think I had a reaction the following day after taking it. Well, back to the drawing board. I do use CBD lotion topical for aches and pains.
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I had a second new BC (both right side) 2 years after BMx. My onco said, it was a diff type of cancer than my original. He had the lab check my slides from my first BC. I also had a DIEP reconstruction with the BMx. A new cancer can grow since there is always some breast tissue left behind after mastectomy. But it is super super rare to get 2 diff BC the same breast. 99.9% it’s a recurrence
I just started take AI. I did aromataze for 10 days and had to stop - my entire digestive system stopped working. Now letrozole, 2 weeks and I have such bad knee pain I can barely walk today. Not sure I can stay on the letrozole either - hard choice but my QOL is terrible.
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Mememee, What a terrible choice. Frankly my bones ache every day as I chose not to take motrin ect I just put up with it, Some days are better than others. Today I'm walking like i'm 90 but I am walking. I am on letrozole and onco said there is not much difference between the Al as far as SE. He wanted me to try tamoxifin but looking at the SE I decided not. The devil you know. I am afraid of change. I'm sure this doesn't help you but know you are in the same boat as others
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KID1919: I'm not sure why the doctor would tell you all the AIs are the same. I had bad joint pain and could hardly walk within the 8 months of taking letrozole. I switched to anastrozole and have been on it 8 months with no joint pain at all. In fact, I don't think I have any SEs (knock on wood). I would ask to switch to one of the others and keep trying all of them until you get one that works for you.
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Kamboka, Thank you for the info. My last visit with onco was very rushed ( I won't be seeing him again as he is moving away.) I came out of there worried and confused. It seems when I complain about the SE no one listens. I know they are minor compared with what other people have but still! Thank you again
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Jinx27 - thank you for the recs! I am a terrible sleeper (well predating the meds, but they certainly don't help!)
FWIW, I have found that melatonin is a weird weird med. Some people do best with tiny doses (300mcg) and some people do best with huge doses (20mg+) or anything in between. For myself, I get weird dreams and not much sleep help on the lower doses, but 20mg is fine for me and can help with no morning grogginess. But I do find that it will work for a while and then it's like my body adapts and it stops helping, so I have to keep it in rotation with other sleep aids.
I've never tried CBD/cannabis, but apparently it's coming legal to my state soon and I will definitely be talking to my doctor about it. Good sleep is such an important block for *everything* else!!
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Update: I cant believe Im saying this but I think I got my menstrual cycle is back. I noticed the signs this morning, back cramps and abdominal cramps too. Its quite light. I have more cramps than typical discharge. My oncologist and my fertility specialist said it would take a while for it to come back but I think its showing signs of tip toeing back in.
I kinda got used to menopause! But with no more ovarian suppression this will happen. Due to my age and not having any children Id like to preserve some eggs in the near future.
Salamandra, you can buy CBD now because its legal in the USA. Cannabis itself is the substance that has been topic of discussion for sometime but CBD does not have psychoactive effects of THC like cannabis does.
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Congratulations Jinx27! It is nice to hear that you are getting back to normal. Who would think we would cheer for PMS?
What brand of CBD do you use?
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Lily the brand I purchase is called RXRemedies, here is the link to their website. Remember if you want sedation try Indica based products.
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thank you Mavericksmom, I decided I will try the Tamoxifen:)
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I took tamoxifen 8 years, after a year of chemo and rads. I tolerated it well for the most part but I couldn't tell what's the tamox, what was menopause and I was worried tamox might be toxic after all these years. (was 47 when dx) . I've been off of tamox 3 months.
What's different? It's easier to lose weight. My body is a little less sensitive to gluten I think -- fewer dermatitis problems. The prickling in feet that had recently started is gone. (I think I was developing neuropathy)
What's the same? Still vaginal dryness and some itching, some constipation and leg/joint cramps managed with magnesium, Weird body temps- feel hot a lot though not a hot flash. Before I was cold a lot.
I am going to try to start an AI in November. My MO says it's not necessary but due diligence. If I don't like it I can try a different one, go on tamox or nothing. I don't want to take an AI, but I'd regret it if the cancer came back and I hadn't at least tried.I have to figure out which AI has the least side effects.
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Momwriter I am in almost exactly the same boat as you. Menopausal and seven years on Tamoxifen - my MO suggested coming off as I have some newly-discovered retinopathy and it may well be tamoxifen-related. This last year has been a doozie with the menopausal symptoms - moods and energy up and down, sleep disrupted, hot and flashy and I found 10lb in three months without doing very much different with my diet or exercise.
I'm really nervous about coming of Tamox without a plan to go on an AI but I also just need some relief. How long will you be on "vacation" and how did you and your doctor decide on length of break between Tamoxifen and AI?
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Is there anyone out there with stage 1 post double mastectomy who did not opt for hormonal therapy? I cannot do this for the next 5 years. I’m not sure if the benefits outweighs risks!!
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I opted not to take them. I’d taken anastrozole fo 3 months while my BMX with immediate DIEP recon was delayed due to COVID last year. Had miserable SEs. After the surgery I was told by MO my risk of recurrence (meaning mets) was 3% with the AIs and 6% without. My oncotype was 6 on my ILC side, 11 on IDC side. Cancers were ER+/PR+ HER- I was 62 at the time. Before my diagnosis I was taking HRT but had to quit immediately when I got diagnosed so that obviously reduced my estrogen. So based on all these factors I decided not to do AIs. If I was 10 years younger Im pretty sure I would have tried other types of AIs to try to find one I could handle however.
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@Abigailj, I am in a very similar situation (ILC w/OncoType score of 7, so 3% risk w/Tamoxifen or 5.5 - 6% w/o). I have struggled with the decision on Tamoxifen more than the decision between lumpectomy vs. mastectomy. After extensive reading and research, I’m comfortable trying a low dose and my MO fully supports my decision. I’ll start at 5mg daily and bump up to 10mg if I can tolerate it. My prescription is still sitting at the pharmacy because I’m dreading it. Hopefully the lower dose will result in few or no SEs but is still enough to stave off mets.
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CBD research is limited but promising. Im hoping that oncology treatment becomes more and more intergrative. 