"Tamoxifen Road" - Support and Encouragement
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pinger - I take Tamoxifen at bedtime and I also take 3mg of melatonin. I do get up to go to the bathroom at least once but the melatonin helps me have a good night’s sleep
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Hi Pinger,
I have been on Tamoxifen for 5 months, and my sleep pattern is exactly like yours. I am also having to make several trips to the bathroom, which doesn’t help! The nausea and dizziness has gone away, so hopefully that’s a bit of good news.
One thing I have recently decided to try is cutting the pill in half and taking half in the morning and the other half at night. This way I am still getting a daily dose of 20 mg. but I’m hoping the smaller doses are a bit easier to handle. I’ve only been doing this for one week, so it’s probably too soon to know if the divided dose is making a difference. Overall, this medication has not been easy to take, but others who have been taking it longer have said that various side effects have come and gone over time. I’m holding on to that thought! Good luck.
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HI Mom2bill , Pinger, I take 10mg in the AM and 10mg in the PM. My doctor is okay with this. I find I am still having trouble with insomnia. I take melatonin, but it doesn't seem to be working for me any longer. I had trouble with getting up frequently, in the beginning, to urinate, but since my hysterectomy I no longer have that issue. The tamoxifen had enlarged my uterus and maybe that was pressing on my bladder?? I won't go back to taking one 20mg tab a day. This seems to be working for me. Best wishes...
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Hi Flashlight: I think if we could come up with a solution to this insomnia issue and bottle it, we’d become millionaires! I’ve also been taking melatonin and found that it really doesn’t help much. Sometimes it seems to help me fall asleep, but I still wake up 2 hours later and will be awake for another two hours. I’ve tried all of the things that are typically recommended for sleep, including an essential oil diffuser. (Like I said, I’m getting desperate!) I think getting a good night’s sleep could make it easier to tolerate the other challenges we’re all facing.
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Thanks all for the great responses. I did get a call back from my doctor and she is OK with splitting the 20mg into 2 10mg doses, one in the morning and another in the evening. For those that did this - do you feel like the side effects have lessened significantly? I will be starting this split tomorrow. Keeping my fingers crossed!
When I was taking the 20mg at bedtime, I noticed that sometime in the afternoon, usually about 16 hours after taking the 20mg, I actually sort of feel like my normal self. If I split the pill, would I feel funny all the time? I think I can handle a certain amount of dizziness and nausea, but the insomnia is really awful. My second question is whether you feel the effects right away after taking the pill? I noticed some slight insomnia when I took the 20mg pill in the morning but it seems to be immediately a problem when I take it at night. I wonder when the best time to take this, 6am and 6pm? That way, it has time to work most of its bad effects before I start work or before going to bed, perhaps? Also, do you notice if the side effects are better with or without food?
I will check with the doctor to make sure it's ok for me to take melatonin if splitting the pill into 2 doses doesn't seem to help the symptoms.
Thank you so much for all your wonderful advice. It means so much to me that others can relate as sometimes I feel so lonely in this journey.
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pinger, my pharmacist advised taking it with my evening meal--yet another option! You may need to try several options to learn what works best for you. Best wishes as you work this out.
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Hi pinger2474,
I have been taking Tamoxifen for about 8 months. My first month on 20mg had been brutal, so my MO advised to stop for a couple of weeks and start at 10mg. There are actually studies supporting taking a lower dose of Tamoxifen and with your petite figure you might actually benefit from reducing the dosage.
For the first couple of months I had the very same SE like you, even on 10 mg. It's uncanny the similarity! However, the number of trips to the bathroom have gradually diminished and now are completely normal. I even forgot I ever had that SE. The sleep improved somewhat, from little sleep to disrupted sleep, with short increments at the beginning of the night to about 3-4 hours in the morning. In the last couple of weeks I was able to sleep better, so I am holding hope thinks will keep improving.
My appetite isn't great and that's probably related to my smell and taste being affected. However, unlike you, I gained 15 pounds, even though I am much more active then before. 15 pounds is a lot for me, as I am rather of slender build. That's actually one reason my MO said he was confident to recommend a lower dose. The other reason was that mucinous cancer -another thing we have in common - tends to grow much slower then other types.
Best of luck going forward.
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Pinger I am thin like you although not as petite and the Tamoxifen has really impacted my weight negatively. About two years in, my SEs were getting too intense and my MO now has me on 10 mg twice a day. A lot of the SEs have backed off for me. I have actually gained five of the 15 pounds I lost back! Sleep is mostly better but I can still have a several days in a row of disturbance then it passes.
A word of caution to those who are thin and premenopausal - at diagnosis I had osteopenia. I had a repeat 2 year dexa scan and now I have full blown osteoporosis. It has been documented that Tamoxifen taken pre menopausally can negatively impact your bone density. So make sure your MO is watching for that. Looking back I should have had a Dexa perhaps at one year. This stuff is like whack a mole. Always something.
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Rain - Thanks for your message. I'm glad to hear I'm not alone with my symptoms. There isn't a lot of info about mucinous cancer other than it is quite rare and grows less aggressively. Per my doctor's instructions, I'm going to try the 2 dosages of 10mg morning and evening to see if the symptoms are better. I skipped my 20mg last night and took the 10mg early this morning. I am worried about the 10mg that I will take later this evening and how that will affect my sleep tonight. I have to keep reminding myself that the drug is to prevent another recurrence and that is a good thing!
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Rah - thank you for the message. I forgot to mention in my original post that I was premenopausal when diagnosed. I was in perimenopause with somewhat irregular periods and light insomnia at certain times of the month. Since I started tamoxifen, I haven't had my period in 2 months. My doctor says tamoxifen doesn't put me into menopause, but it sure seems like it! :-)
I'm happy to hear that your SE was much better after splitting the dosages. And that you've gained some of the weight back!
I am going in for a bone density test next week to get a baseline. I have been taking a multi vitamin for many years but stopped prior to my surgery. I will see if I should be taking a calcium / vitamin D pill and whether I should resume taking a multi-vitamin. I think I can also use more vitamin B12. I will be meeting with my nutritionist and doctor again next week and will ask them what supplements I should take.
I'm actually thinking that my anxiety and stress after my cancer diagnosis caused the weight loss prior to surgery. But it's just been interesting that I've been eating more but not gaining any weight at the same time I started taking tamoxifen. I have noticed I seem to feel more wired and restless (almost like I'm about to have an anxiety attack but less severe) several times a day. I wonder if the extra adrenaline is using up all the calories from the extra food I am eating which is why I'm not gaining weight.
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I have been on Tamoxifen for for over 5 years as primary treatment for metastatic disease. It has not progressed so I guess it is working. My question is does anyone have profound fatique from Tamoxifen?.
Some days I just lay on my sofa and read. I take vitamins, do yoga,walk, acupuncture. Dosage is 10mg.twice a day. Any suggestions? My Oncologist says it is cause I am getting older! Not acceptable.!
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joyandhealing, Yes, it gives me fatigue too. It also gives me insomnia so it's probably a double whammy!! I went off it for surgery and I felt like my old self again. I was told to try B-complex vitamins and increase my water intake.
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joyandhealing, prior to starting Tamoxifen I had been doing a lot of walking and had a great deal of stamina. Once I started taking it, I immediately noticed the fatigue, so I don’t think the fatigue is age related. I continue to walk and I think the fatigue has decreased somewhat, I have not been able to regain my stamina. I’ve also added a B complex, and I think it has helped.
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Pinger, i started Tamoxifen 2.5 months ago and went through a period of about 4-6 weeks where I was not myself. I am lean, and lost over 10 pounds quickly, my BMI went to about 19 or so. I had a lot of anxiety - not about breast cancer, but about nerve pain caused by some dental procedures in July that went awry. I had extreme weakness and dizziness, it was hard for me to get to appointments, I was afraid I would faint. There is no way that I could have worked during that time period. I am now back to feeling kind of normal re: my appetite, and back to doing my elliptical 2x / week - before Tamoxifen, I did it 3x / week. I'm also golfing 2x / week again - just started up this week after cutting back to 1x / week or not golfing at all. So, I'm slowly getting back to my old activity level.
Anxiety and stress can exacerbate the side effects we know exist. Also, a nurse case manager told me to make sure I was hydrated - that worked wonders. I now drink much more water, the shakiness was probably caused by dehydration. When I did not have any appetite and was not myself, I made a point of drinking Ensure protein shakes and juices so I would at least get some nourishment. I also ate hard boiled eggs, cheese and peanut butter to try to get my calories up. Lately, I've been having peanut butter, banana, chocolate protein shakes for breakfast that have a lot of calories but I don't care, I'm working on getting my strength and stamina back.
If your anxiety is intense and intolerable and you are open to prescriptions, you may want to consider trying an anti-depressant for a short while to help you through the adjustment period - there are some permitted with tamoxifen. Some of them cause pronounced drowsiness and can be prescribed to aid in sleeping. I'm not suggesting that you need it, but know that there are prescriptions available if you find that you're unable to function.
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I have been on a break from tamoxifen since August 9th. This was due to a surgery but I had been putting off restarting it. I experienced fatigue, anxiety and joint pain while taking it. I now see how much it was affecting my mental health. I have the motivation to get up and do things. While on it combined with the fatigue and a mental state where I felt no joy,if that makes sense, I barely wanted to get off the couch. With that being said I am now getting nervous.
I don’t know how much stock to put into it but I did the predict breast cancer tool. And the results were a little startling. Without hormone therapy 5yr survival is 86%, 10yrs 67%, 15yrs 51%. I really think I do a poor job of conveying to my provider how it is affecting my QOL. I have really only had one conversation with my MO about this and it did not go well. I tried to understand exactly the benefits I was getting and he told me it would be “very dangerous” to stop taking it. There was more to the conversation that caused me to just dissolve into tears and shut down. (Really long story!) Does your MO give you a percentage of how much it is benefiting you? Or what your chance of distant recurrence is? Anyone have any suggestions on how I should word my questions and what all I should ask in my upcoming appointment? Thank you for listening
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Dani,
I assume you are taking 20mg per day?
Have you tried take half in the AM and half at the bedtime?
Or maybe ask MO if it's okay to just take 10mg per day? It's better than nothing...
Hope the side effect diminish if you reduce the dosage.
Let us know what MO says.
Good luck.
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https://cancerres.aacrjournals.org/content/80/4_Su... Moth gave this link about ER+
Dani, you are young and have been through a lot. I found taking 10mg of tamoxifen and slowly increasing it helped me. Give it another try.
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Dani I get you about laying on the couch unmotivated, impacts me that way as well. Every day feels like it is a fight to find some kind of normal. I push to eat, I push to exercise somehow, I push to get something accomplished.
Things are a smidge better for me with taking 10 mg twice a day. I am considering ramping down to 15mg a day total to see if I can find a better balance.
Please try different options with your MO. If She/He is not communicative, it might be time to get a second opinion with someone that will partner with you on your treatment plan.
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everythingwillbefine- I was taking 20 mg. I don’t think I could do the split dosing. I work 3pm-3am and I am afraid I wouldn’t be consistent in taking it. I will talk to the MO about doing the 10mg.
Flashlight- Thank you for the link. I did take 10 mg this morning, so here is to hoping I feel better this time around. I will slowly ramp back up to 20mg. I am trying to be hopeful!
Rah- I am sorry you are dealing with the fatigue as well, it just sucks. I am going to write down my questions to take with me to my appointment so I can convey accurately my concerns.
Thank you for responding! I appreciate all of you.
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I had surgery on my ankle September 1, my orthopedic surgeon put a plate and 3 screws and donor tissue to hold my ankle in place. This will remain for the rest of my life. One month post op I am doing well, am now walking with a cane, wear a brace if I drive, wear my boot if I have to walk alot. I begin PT today to work on some issues related to break, but PT says that I should only need 1 to 2 months.
All was going well, however, I have had light vaginal bleeding, tension type headache like when I had my period but I am supposed to be post menopausal. Last time this happened in June, I had an endometrial biopsy, which turned out benign, bleeding stopped. I do have my annual gynecologist visit next week, so perfect timing for this to happen, I have a feeling maybe a DNC will be in order. Hope to get to bottom of it or just proceed with hysterectomy. This is getting old!
I did find out that I can not take Tamoxifen nor Evista due to testing positive for a genetic blood clotting disorder, Prothrombin G20210A, which puts me at higher risk for blood clots. Can't take an AI either with the broken ankle healing and arthritis in my back.
The medical merry go round continues!
Celand
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Pinger and others - I’m someone who has been on a 10mg dose this entire time and it has been OK’d by my oncologist. I’m also 5 ft, petite like you though I weigh more. Sorry for the late chime in but I hadn’t checked the boards in awhile (just busy with work) so just saw your question. Anyways, my oncologist approved me for the 10mg dose for a few reasons:
(1) Lots of studies recently showing smaller doses have been just as effective and more tolerable on SEs. I had posted them to this thread previously - maybe scroll back, my posts are easy to spot as they always come accompanied by cute dog pics!
(2) My Dad is a (retired) pediatric oncologist and he was much loved by his patients for always taking them into account aka whatever he prescribed had to do with their unique situation and not just the by the book standard. He went to an oncology conference before I was to start tamoxifen and he’s the one that pointed me to the studies re: lower dosages and due to those studies and my 5 ft. frame he recommended I be at the 10mg dose. My oncologist has a lot of respect for my Dad (same hospital - Kaiser - and my Dad is a legend there) so if that was my Dad’s opinion, he agreed.
(3) I have a theory that my oncologist figured it’s better for me to be consistent on a 10mg dose and stick with it for 5 years than start on 20mg and quit early from SEs.
Anyways, I’m also premenopausal. This is what I can offer from my experience on tamoxifen...
- The dizziness and nausea should pass, I had it the first couple weeks then never again. It’s your body adjusting to tamoxifen according to my oncologist as it’s a different hormone in your system that your body has to get used to.
- Same for irregular periods. I was extremely irregular for the first 6 months and then I settled into a very regular monthly period after that. For better or for worse LOL! I used to say that if tamoxifen resulted in less frequent periods that would be a welcome side effect. Again, body adjusting to the new hormone.
- I take my dose in the evening. Oh that reminds me -
Dani - you and I both have the regular work schedules. One suggestion if you want to split your dose is to have an alarm set on your phone to go off when you need to take tamoxifen, and carry some with you in your purse so if you happen to be out you can still take it. That’s what I do, I take mine at 8pm every night. I had tried later but then had trouble sleeping too, 8pm works for me.
So aside from the adjustment period, the only SE I’ve had on tamoxifen is weight GAIN and I can’t seem to lose weight on it. Any tips would help as I really want to be able to lose weight while still on tamoxifen as I don’t want to pause and have to readjust and deal with the nausea and irregular periods again! My body isadjusted to it now, I just need to lose weight. Oh, not sure if this is a reason I never suffered from cramps in this but I do yoga, dance and swim on occasion. Swimming and stretching seems to help the most.
And as is tradition, here are Domino and Finley:
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Hello to all! I started tamoxifen less than 2 weeks ago, after completing chemotherapy treatments. My Dr and I chose tamoxifen even though I am postmenopausal due to my low bone density levels. I have had a some joint aches and a bit of tiredness, but for the last two days I have battle mostly insomnia, mood swings, easy to cry and feel overwhelmed, and even a bit of panic/anxiety feelings. My question is, are these issues with emotions common? And if so, would some of you share if your body really will begin to adjust, and these issues will get better?
I had just begin to get my energy back, after my chemo, and was beginning to feel more like my old self - pre BC Diagnosis - but now I do not feel anything like myself at all.
Thank you for any advice of words of wisdom you may have!
Karena77
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My ladies!
I'm thinking about the weight issue too. I knew I had put on a substantial amount of weight, but in my head it had been a gradual thing over the last five years since I started teaching. But I recently saw a picture of me from not long before I was diagnosed, and I realized that actually most of my weight gain came after that. I am thinking a combination of stress from the whole thing (and I am a comfort eater), stress from the death of my co-mother that had happened within a few months of all that, and side effects from tamoxifen (either directly or indirectly from its sedating impact on me).
I've been off tamoxifen for about a year now but I think quarantine played a number on me also, and it's possible that even though it's a dream compared to tamoxifen (for me personally), toremifene could be impacting things for me also. I reached pretty my lifetime high weight. I was lucky in that it wasn't impacting my other health numbers so far (blood pressure, etc), but my vanity was definitely suffering!
Anyway I'm trying a keto diet. I've rarely if ever done a diet in my life because I worry about disordered eating and have a history of mild binge/purge, but I guess I was hoping that either this diet was different enough or that I am different enough to be able to do it without having the psychological harm outweigh any physical/vanity benefits.
It is so funny how bodies are! I really was convinced one thing was true, and it wasn't *completely* false - I definitely had some weight gain before - but it left out most of the truth!
This week I'm struggling with my sleep again - but that's a lifelong nemesis that long predates the cancer and meds. I go on a merry go round of different drugs/supplements helping, but after a while they conk out. Right now none of my usuals seem to be helping and I can feel myself getting more tired every day
I was really hoping it wouldn't get this bad now that I have a dental appliance for the worst of the UARS issues but what can you do. Now that I'm not on tamoxifen, I guess I can try Benadryl again. Or maybe request trazodone again - though then I have to start doing EKGs because that does have some potential interference with toremifene.I will say, being a teacher this last few weeks has been absolutely insane on so many levels, but I am so so so so so grateful for my health insurance! (and my strong union that got it for us).
Joyandhealing - tamoxifen had a pretty sedating effect on me, though less physical fatigue and more needing a nap every day plus 10 hours of sleep every night.
Pebbles - yay for more Domino and Finley!
Celand - that sounds like a huge drag! I really hope you get some improvement/relief soon!
Dani - that sounds like some really tough decisions. Would your oncologist be open to letting you try toremifene instead? It made a huge difference for me. Any updates? Can you get a second opinion?
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Karena77, I have definitely experienced emotional side effects of Tamoxifen; mainly anger. Little things gets me so riled up these days! (Although that also could be in part thanks to everything else in the world fraying my nerves.) I've heard exercise helps. I really need to try and do that more. Good luck to you!
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Karena, emotional responses, absolutely. When I first started Tamoxifen it felt like a flaring flame of anger even at small things. It did get better but has not gone away completely. I do have a better filter and blurt out much less often. There is hope!!!
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Beverntx yup Tamoxifen Tourette's! Def have that on occasion.
I have been feeling better on my 10 mg twice a day. I have actually been able to put on five pounds which was very much needed. The weight popped on almost overnight but I seem to have stopped at that level. I still need those daily naps however. Amazing how sedating this medicine is.
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Rah2464,
Seriously! In retrospect, I was wishing I'd kept some for long plane trips or something. Please tell your doc and your pharmacist if you haven't. I feel like sedation isn't on their go to list of side effects but it sounds like I am not the only one!!
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Salamandra- the few times I have tried mindfulness meditation, I felt less stress and didn’t need to eat for comfort. I wonder if it would help calm you for better sleep? I need to make this a daily routine. There are a ton of free online resources
I saw this online program called Bright Lines eating by Susan Peirce Thompson PhD. It’s a simple program with only a few rules to rewire your brain when it comes to food. There’s also a book available with the same title. Written in 2017, you may be able to find it at the library.
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Hi karena77, I am postmenopausal as well. When I first started Tamoxifen it was like I was going through menopause again. I would get weepy at nothing, anxious, and at times angry. That has all passed as time went on. The fatigue and insomnia are on going. I try to stay hydrated and take a few supplements that are helpful. I talked to my pcp about the insomnia and she would not give me a sleeping pill, but offered different antidepressants like Trazodone and elavil, I didn't want another med with more side effects. I'm looking into a CBD sleep aid I am trying the keto diet as well. I didn't realize that it was good for breast cancer. I really like the information on the diet doctor site. It was recommended to me on another post. I also divide my dose and that has helped me with the side effects.
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I had my appointment with the NP at my oncologist office. My original MO is no longer with the practice! She really took the time to listen to me and really validated my SE’s. She said the choices were a trial of OS+AI and see if that is better tolerated by me. She also said we could try Prozac because that could give me a boost of energy. I thought that was a no no with tamoxifen?? I totally forgot to ask her about toremifene but I will when she calls on Thursday. She also said I could try more consistent exercise and a vitamin b12 and see if that makes a difference. And of course she said I always have the choice to quit completely.
I don’t think I am comfortable with trying Prozac. I am thinking about asking about going off Effexor (maybe not having bizarre dreams wake me EVERY night will help) and see how I tolerate tamoxifen without it. I also wonder about acupuncture for the night sweats. I was a mess after I left even though the appointment went great. I hate all of this and want the old me back. Also she set me up to see my new MO in January. It is a female and she specializes in breast cancer.
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