"Tamoxifen Road" - Support and Encouragement
Comments
-
Pcox congratulations on your 5 years complete! Sorry the SEs are so bad, but it is nonetheless inspiring for me only month into my "sentence" to hear about someone getting almost all the way through it ok. Let us know what you're MO says!
0 -
I just took my first Tomoxifen and I am pretty freaked out! I put it off as long as I could. 48 years old, stage 2. Just finished radiation December 2nd. I am praying it's not as bad as I've heard!
0 -
Hey Cole2020, there are definitely women for whom it feels like a sugar pill. I think there are threads on here about good experiences with tamoxifen. Sometimes the bad can seem more visible than the good because people are much more likely to be participating here and thinking actively about their cancer if they are having bad side effects.
Even for a lot of women for whom it starts off bad, the body adjusts, or they take a break and start from a lower dose, or adjust the timing, and are ok. I feel like I recently read that it's about 35% of women who go off tamoxifen because of SE, so really the odds are in your favor that it's manageable.
If it's not, there are other options. I was one of the 35% but now I've switched to Toremifene. I'm not sure how it will be long term yet, but the first couple of weeks have felt like such a breeze compared to the tamoxifen, so I'm hoping for the best.
0 -
Thanks Salamandra!!
0 -
Hello everyone. Happy New Year!! I've been on Tamoxifen for just about 6 months. Until about a month ago I still had the Mirena which i think helped keep some of the side effects minimal. Since the Mirena was removed I've noticed the hot flashes are stronger and my memory is getting annoying as I seem to frequently forget things or can't figure out what or how to do something. The miracle cramps and bone pain aren't too bad thankfully. I have been post menopausal since starting Tamoxifen due to chemo and continue to be.
I hope everyone has a good and healthier 2020!!
~Katie💗
0 -
Any advice on how I can stay asleep while on Tamoxifen?
I have been on it for 2 years and Accupuncture helped elliminate nightsweat, but now I notice that I fall asleep fine and wake up about 3 hours later because I am hot (not sweating), I try to change my blankets, stick one leg out, take some clothes off, but I do not fall back to sleep. It's hard to function on 3 hrs of sleep. I take stimulants during the day, so I can function at work. I hate Tamoxifen. Who even knows if it directly benefits me, not % of women in some study.
My oncologist is aware (call the team is what we are told), she said she can give me prescriptions of different medications that may reduce these side effects and may cause other side effects. I am pretty sure that there is not a good pharmacological option right now for reducing side effects of Tamoxifen. Thousands of women going through this and I feel so alone. Thanks
0 -
Aliceko- I have the same problem. I use 5mg chewable melatonin, I break them in half, so 2.5 mg (ish). I don’t need them to go to bed, but I keep it on my nightstand for those middle of the night wakes. They usually help me fall back asleep within 20 minutes, which is way better than two hours of laying there awake! And I can still get up in the middle of the night if the baby cries, so they don’t “knock me out”. Might be worth a shot.
0 -
Cpeachymom, thanks I will try it. I take it sometimes in the evening - like 15 mg of quick dissolving. Can't be that melatonin gives me worst side effects than Tamoxifen
0 -
ipenelope I am interested to read about the memory problems, I have found my memory has definitely got worse since being on tamoxifen. I used to be known for my excellent memory, these days I feel like my brain is like a sieve!
0 -
Hey Aliceko,
Some things to try:
- Changing the time of day when you take the tamoxifen - I had to take it in the morning or my sleep was terrible, but other people find it's better midday, or in the evening
- Splitting the dose and taking half am and half pm
- tiny Ativan or klonipin dose. You can try before you go to bed and/or when you wake up. I used to find (for different issues) it helped me a lot with both staying asleep and also getting back to sleep once I woke up
- usual assortment of sleeping drugs - antihistamines, old sedating antidepressants at low doses, etc.
- different brands of tamoxifen sometimes have different SE for different people
Sleeping issues are terrible - so destructive for quality of life. And I find that so often people want to blame the patient. I'm not against 'sleep hygiene', but I think it's been somewhat over hyped.iPenelope,
That's really interesting about the change without the Mirena. I've had one in since I was diagnosed (got it in the day they found the lump actually) and I'm currently not planning on removing it so I guess I won't have a sense of how it's impacting my SERM experience, but still, interesting.
0 -
Salamandra-
My oncologist questioned the Mirena when things first started for me. Interesting I just looked on the Mirena website and it's contraindicated for women with known or suspected breast cancer. Here's a screenshot from their site about it. Glad I got it removed.
Worry-
Trouble concentrating and memory problems can be a result of low estrogen levels which is what Tamoxifen sadly does.....
I hope everyone is having a good 2020 so far and keep kicking cancer's ass!!🥊
~Katie💗
0 -
Yeah my doctor also encouraged me to take out the mirena. But I did my own research and there's no actual clinical evidence for the risk, where there is actual clinical evidence of it lowering other kinds of cancer risk and some (low quantity but actual) clinical evidence of it not increasing recurrence rates for a situation like mine.
The concrete positive quality of life benefits outweigh the theoretical hypothetical risks (for me personally), so I'm keeping it in. My gynecologist is encouraging me to at least switch to the lower hormone one (skyla maybe?) and that's something I'm considering.
I did run my 'analysis' by my doctors and they agreed with my reading of the current status of research. Official recommendations are very risk averse with anything hormone related that doctors see as optional rather than therapeutic, maybe out of liability concerns and/or from being burned by what happened with the whole hormone replacement therapy debacle.
If I hadn't already tried the copper IUD and known its impact on me, I probably would at least have tried it. And I don't have a problem with very conservative recommendations! I just think that they should be more transparent about the actual research so that doctors can best help us make our own risk benefit decisions, and not just lump it in together with estrogen hormone therapies that do have well documented risk impacts.
0 -
Worry:
I did great for 1 1/2 years almost no side effects to speak of then aobut 1 month ago
the brain fog came full force and was so bad my onc said take 4 weeks off which I did and slowly but surely the brain fog went away. Now he wants me to take 1 pill every other day for a month to see how it goes.
You can talk to your doc if the brain fog starts to get to the point where you really
are not functioning well any longer.
My experience was that the brain fog and other side effects went away once the Tamoxifen was out of the my system.
Wishing you the best!
0 -
Thanks ipenelope it's certainly a trade off taking these pills, although I don't think I would feel right stopping them.
LJDH0709 for your feedback and suggestions re the brain fog. Wishing you the best too.
0 -
Hi everyone so I've been on tamoxifen for since November 12 I was hoping for no side effects and experienced mild hot flashes and now no hot flashes. Does it mean it's not working?
0 -
Aseye no it means you are lucky!
Although I have had side effects come and go, so your lack of side effects may be temporary. I hope it will continue for your sake!0 -
Aseye - ditto what Worrythepooh said! I had similar, asked my doc and he said it means the body is adjusting to tamoxifen. So, hoping it stays smooth for you.
0 -
Hello, I am not really sure where to join in on this conversation because I am new to this group. I have atypical lobular hyperplasia and have had a lumpectomy. I just started the Tamoxifen 3 weeks ago. I was really scared because of all the side effects. I also had had a uterine biopsy that showed atypical hyperplasia and I was scheduled for a total hysterectomy. I have been seen at MD Anderson for my breast appointments and I decided to get my slides from the uterine biopsy sent there for another opinion. Three pathologists read the slides and determined that I do not have hyperplasia at this time. I have delayed the surgery for now because I am also recovering from diverticulitis. I am having side effects from the Tamoxifen. I can only describe it as a horrible case of PMS complete with an outbreak of acne. Has anyone else had this? Also, I am 55 and haven't gone through menopause yet . How do you know if you are in menopause if your periods stop with the Tamoxifen. I know I need to be careful about unusual bleeding on the Tamoxifen. Do most women have more pelvic/vaginal ultrasounds while on Tamoxifen?
I just feel so scared and would love to hear from others who have been in this situation. I wish there was another drug for prevention or a lower dose of Tamoxifen. Seems strange that everyone is just put on the same dose regardless of weight, side effects etc. I contacted the nurse practitioner that I see and she said to stop taking it but didn't offer an alternative. I want the prevention that the drug offers. Also, do most of you have either MRI or mammogram every 6 months?
I also love to see all the dog lovers on this site. I am also a dog lover and recently lost one of my dogs to lymphoma. She was only 7 and was my best friend. I miss her so much!
0 -
Hey CharC,
That kind of hormonal response, to me, sounds very likely to dissipate as your body adapts to the dose. My doctor urged me to give my body about 6 months to get a fuller sense.
In the end, I couldn't tolerate tamoxifen (fatigue) and no amount of futzing with the details helped. But I discovered Toremifene, which is actually an alternative to tamoxifen and has clinical evidence, albeit not a ton specifically for premenopausal women. I think that not all doctors are equally knowledgeable about it. It's not FDA approved for premenopausal women so there can be insurance issues for covering it. My practice was satisfied that it was an effective alternative (the senior oncologist had actually advocated for FDA approval).
That said, it is in the same class of drugs (SERM) as tamoxifen. It has a slightly different side effect profile and metabolic process from tamoxifen. For me, that seems to have made all the difference and I'm tolerating it well (at least for this first month). But for other women, it might be worse than tamoxifen. Still, at least there's something else to try (before/besides switching to ovarian suppression plus aromatase inhibitors).
FWIW, these are the tweaks I tried before giving up on tamoxifen. From my research and reading here, they work for many women, so might be worth trying if you don't see improvement in your side effects:
- Taking 10mg in the morning and 10mg in the evening, instead of 20mg at once.
- Changing brands of manufacture (there are a ton).
- Going down to 0 and then working back up again, maybe even with 5mg every other day to start.
- Going down to just 10mg per day. The reason 20mg is the dose is because it's the lowest dose that has many studies to clearly establish efficacy. But there is enough evidence that 10mg can make a real difference that if it's a difference between 10mg or 0, some doctors will be supportive of 10mg.
Good luck!0 -
There have not been any studies that showed that 20 mg is needed to get the benefit. It may be (or may not be) that 15 mg or 10 mg or 5 mg would give the same benefit.
I couldn't handle the fatigue / zombie feeling, etc when I went above 10 mg. I'm doing pretty well with 10 mg and my side effects are pretty manageable.
0 -
Hi DorothyB, Glad to hear you are doing well. I also was doing fine on 10mg. I'm going to have a laparoscopic assisted vaginal hysterectomy with a prolapse repair in a couple of weeks. My MO and NP said there wasn't any reason to stop Tamoxifen prior to surgery, but I did anyway. I was concerned about blood clots even though I don't have a history. I feel guilty holding it. Has anyone held tamoxifen prior to surgery?
0 -
Hi Flashlight: I had a total knee replacement in September and I stopped Tamoxifen 3 weeks before surgery and 3 weeks after surgery. I also took 1 baby aspirin during this 6 week time. I had a blood clot in my leg 40 years prior to this so this is what my doctor suggested. He said it may be over kill but it was up to me. Good luck with your surgery. Keep in mind that immobility is a big risk factor for blood clots, so keep moving after your surgery.
0 -
Thank you , Goldfish4884!
0 -
flashlight- here’s a link re: Tamoxifen and surgery. I’ve never heard of NOT stopping it prior to surgery.
https://www.sciencedirect.com/science/article/pii/S174391911200091X
Hope this helps!
0 -
Cpeachymom, Thank you that was an interesting article. It's always the unknown that is scary. The surgery is going to take just under 3 hours and I'll be there 23 hours....hopefully I'll be up and walking without a catheter!!
0 -
I started Tamoxifen at the mid June and had a surgery mid November and I did not stop the Tamoxifen and thankfully had no adverse reaction or side effects.
Best of luck to everyone and keep kicking cancer's ass!!🥊
~Katie💗
0 -
CharC, I am the same age as you and had also not yet had menopause at time of diagnosis/chemo. I have been on Tamoxifen since late October. My periods stopped after starting chemo and nothing yet. My original MO (she left the practice in July) had told me that in order to be considered postmenopausal, it has to be 12 months after ending chemo with no period, and also 12 months on the Tamoxifen without a period,I b the plan for me is to do the tamoxifen for a year and then transition to one of the other agents used in post-menopausal patients. So far I am tolerating it fairly well. I had headaches for first few weeks but now mostly gone, and occasionally have bone aches but they don't seem to persist. My theory is that side effects are worse for those who are pre-menopausal (which is most people, as those already post menopausal are usually recommended different drug)-I have much less GI distress, gas, etc than I did when still having periods. I do have hot flashes but they are usually in the morning and evening/night, not during the day. I am more constipated than before and also do have a bit of brain fog at times but doesn't seem to effect me overall. I understood from my current MO/RO that first mammogram will be 6 months after finishing the RT, so for me will be March. I also got the idea that ultrasounds will not be done routinely looking for uterine issues, but that if any irregular bleeding occurs, they would jump on it to "catch it early".
--Regarding sleep--during chemo I started melatonin and it seemed to help. I often, though, would wake up after about 3 hours and have trouble returning to sleep, though I went to sleep easily to start with. My husband tends to snore and I also have some unrelated stresses on my mind (I have twins who are seniors in high school and in midst of deciding on college and working out finances.). this past weekend we went out of town and I skipped the melatonin (inadvertently at first). I seem to not wake up like I was before and still falling asleep ok without the melatonin so I have continued off of it and will see what happens. Poor sleep does make the rest of the day so much harder to deal with.
0 -
I've been on Tamoxifen for 2 months now and have seen side effects come and go. There are days when I don't see side effects at all. It does make my PMS worse, and I'm prone to hot flashes and occasional slight dizziness/wooziness. I've also noticed some brain fog but didn't think to put it together with Tamoxifen until I read what some of you have said about it.
I see my MO next month for the first time since going on the prescription. I plan to ask him about potential long term issues with liver function and bone density and how to screen for them. Is there anything else some of you who have been on it for longer recommend I ask? (Trust me, I already tried getting prescribed a lower dose.)
0 -
I am 4 months shy of finishing 10 years of tamoxifen. I started it when I was 29 after an ILC diagnosis with bilateral mastectomy and 4 rounds of chemo. At first, I had what I called mini hot flashes. They wouldn’t last too long but they were there. These went away after 2-3 months on the drug. But throughout my treatment, if I missed more than one dose, I could count on having them return for a few days as the drug built back up until these last couple of years. I just had a full hysterectomy and oophorectomy and was diagnosed with endometriosis. In preparation for that surgery, my onc tested my estrogen levels and found them still fairly elevated despite the tamoxifen and that weighed heavily on having the ovaries out. A week out of that surgery and I haven’t had any hot flashes but we will see. For me, Tamoxifen gave me something proactive I could do to lower my chances of recurrence and that helped. Once I got through those first few months, the SEs were very minimal. Hope this helps others who are nervous about starting and good luck to all
0 -
I’ve been on Tamoxifen for four months. Hot flashes, moodiness, headaches and fatigue are my symptoms. I highly recommend the Chili Pad to keep your sheets cool at night! So worth it, and you can pay in installments. I keep in mind how fortunate I am to not have required chemo or radiation, so I can’t complain.
0
