Bottle o Tamoxifen
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I agree about the not knowing. I didn't really change much of anything in my diet. I try to cut back on sugar. But more because of diabetes than cancer. I once had an exercise class instructor say to me 'Sugar FEEEEDS cancer'. Drives me crazy coming from the person who is constantly talking about all of her drinking. I have never been much of a drinker.
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Lula73,
I was in a bicycle accident with another bicyclist who was going a high rate of speed, and crashed into me. I'm pretty sure the initial impact broke both my shoulders as I was holding onto the handlebars. Unfortunately, both sides are displaced which means either leave as it is and see if the bone grows back together or surgery. Trying the first option first. So can't take anything that depletes my system of calcium or hormones.
I'm not sure what curcumin is but I'll look it up. I do have to be careful of taking lots of products as my stomach can't handle much. I'm interested in trying Melatonin. Is it something you can't get at the health food store vs a prescription? Anything at this point, I need sleep!
Hi Runor,
I haven't tried splitting the pills. My pills don't have any type of coating on them, just dry pills which taste horrible. I'm thinking that maybe taking it in the morning might work. I've been taking it at 8pm and it seems like it would be at the peak of concentration which I'm trying to sleep.
I'm wondering if the other ingredients added to the Tamoxifen might be causing the problem. My doctor wrote a prescription for the name brand to try but I'm not sure if it only comes in generic. Have to talk with the pharmacist.
I've been menopausal for about 11 years and never had any problems with bleeding or anything gyn since periods stopped. The MO thinks it was just because I stopped taking the Tamoxifen for one night. I'm going to make an app't with the Onc Gyn to see if that makes sense or they need check things out. Glad to be menopausal, those periods were a killer for me also.
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I have a question for you all, I've been on Tamoxifen about a year and a half now, and I'm starting to get a lot more hot flashes recently, have you noticed your frequency of hot flashes changing? I have lost some weight recently, so I wonder if that affects it. I've been having hot flashes all along, but not as many as recently, just in the past month or so. I'm 31 so it's nothing to do with menopause.
I also am having increased skin sensitivity/allergies - I had a mosquito bite two weeks ago and there is a big area still around it that broke out in little dark red spots all around the original bite, still itching. I went to the doctor, worried that it was infected, and he said it was just an excessive histamine reaction. Just checking in to see if anyone else has had a similar experience with skin changes! Every little change makes me suspicious and curious, hah.Chiming in on your previous conversation, I agree that it's helpful to limit sugar, but not necessarily completely cut it out. Moderation is always key! I found an article I really liked recently that answered diet questions in a very common-sense straightforward way, the title is sort of sensational but the article itself is great. The main conclusion is "eat food, not too much, mostly plants": https://medium.com/new-york-magazine/the-last-conversation-youll-ever-need-to-have-about-eating-right-10096bd1901
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cpeachy- you can pick up a meter cheap at Walmart for around $10. Would be a good investment.
Veeder-I remember the accident now! Hope you continue to heal and can avoid surgery. I have not found curcumin to mess with my stomach. And the Solgar brand does not require you to be ingesting a certain amount of certain fats to make sure it’s ansorbed. You can just take it whenever you like regardless of your diet. They’ve taken it from a fat soluble supplement to a water soluble one. Melatonin is available at any pharmacy in the vitamin aisle. I would start low at 3mg and see how it does then go to 5 or 6mg and then 10+ if needed. I hope it helps
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Laasstra-I don't have hot flashes at all. I have cold chills so I'm no help there. Was the mosquito bite on the side that you had lymph nodes removed? Be cautious of that because it could turn into cellulitis or a bacterial infection. I've had both from a mosquito bite and had to take antibiotics for 12 days. Just keep an eye on it
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Hi Lula73,
I'll go to the pharmacy and get some melatonin and check out curcumin also. Thanks.Yeah these shoulder fractures are quite painful but my range of motion is good. Just worried about not being able to get my mammogram (was due in August) because it will mess up the healing already in progress.
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Has anyone developed gallstones since begin on Tamoxifen? After an ultrasound due to significant pain, I was told I have gallstones and should have gallbladder removed.... I hardly eat any excessively fatty foods that are associated with gallstones so, of course, I am very bothered and curious to know how I even developed them. I've been on tamoxifen since May, 2015. I like to blame everything on this drug so just trying to see if anyone else suffered these symptoms.
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Search for "Tamoxifen and gallstones" and you will find references to reports about gallstones in women taking Tamoxifen. Assuming you can have laparoscopic surgery, having your gallbladder removed no longer requires the long recuperation period it used to. Several years ago I had a friend who had her gallbladder removed on a Tuesday and was able to attend a friend's wedding on the following Saturday without looking like she had just had surgery. Good luck!
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Veeder - you can buy melatonin anywhere. I am very anti medication but was also getting little sleep. For me, the melatonin is working very well! Hot flashes still wake me up, but I can easily get back to sleep.
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Veeder14 - about turmeric/curcumin . I have not used it for injury related joint problems, but have used it for (general aging?) and now hormonal therapy. Years ago, before any cancer diagnosis I noticed slight issues in hands /fingers with stiffness and occasionally with cold, So I started taking supplements and after a month or so noticed gradual improvement. The supplements vary in strength and "proprietary ingredients". There are many curcumin products. One I use now is made by Gaia , joint formulation, they make several formulations. Another product in cold months I like is "Golden Milk",a mix of turmeric, dates, cardamom, black pepper, which you add to milk of your choice. If you just use turmeric, adding black pepper is recommended for better absorption.
With anastrozole, joint stiffness in hands was almost immediate, and much worse than it ever had been, one thumb even became distorted. My oncologist suggested it might get better ( it did not) and that I could try a different generic or even brand name ( one blogger reported the brand name did not have the SEs of generics, and she was able to get it $1/day from manufacturer. My insurance would have charged 7$/day. I ordered some from the manufacturer, but decided not to take it, because the stiffness/pain seemed to be subsiding after quitting anastrozole.. I take curcumin supplements as well as adding turmeric to food. I switched to Tamoxifen after no hormonal therapy for several months. No SEs, unless those occasional cramps in calf muscles (usually only left leg) are an SE.
My hands do feel a lot better. I do not know if it is the turmeric, supplements, absence of anastrozole or all of the above. I have tried CBD with/without THC and did not find relief from joint issues or occasional sleeplessness/waking up. Don't know if I need to try it more since it might take time to have results.
2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in hands. Started tamoxifen March 2018.
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bluegirl, I was going to ask if anyone here has managed tamoxifen without SEs. I'm on my first week complete without aromasin, and I'm waiting for my hand and foot tendon pain to go away. Will try tamoxifen next. This BC journey is much longer than I expected.
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2fun- I have almost no SE. Things I have that I think is the tamoxifen are little short time memory loss. (Why can't it be some of the long term there's lots of shit I would like to forget!) I have always had a great memory. I never wrote down a grocery list, if I had an appointment 6 months away I didn't have to write it down or never forgot why I went to a room. Now I put conditioner on my hair 3 times in the shower! LOL because I can't remember if I did it! I also have a urgent need to pee! That is 100% Tamoxifen! I did it the first year I took it but when I was on Anastrozole it went away. I sleep well have no pain and I've most 20 pounds since March. I was on Tamoxifen for a year then put on Anastrozole for 2 1/2 months and have been back on Tamoxifen since about June 5th. I take mine at night after dinner. I consider myself fortunate that I don't have the side effects but then my little brain takes me to the is this really working place since my body is not reacting like so many others.
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Hi Vargadoll,
I've only been taking Tamoxifen since July 1st and have that urgent need to pee. I got checked for a UTI but don't have one. This is very annoying running to the bathroom all the time. Trying to figure out what to do about getting on a plane where you can't just go into the bathroom anytime you want. I can stop drinking so much water in advance I guess.
Sorry to hear you have memory loss. I haven't experienced that. But I sure am having sleeping issues. I also take mine after dinner so that there's substantial food in my stomach.
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Veeder14- it is so annoying! I cut back on my water (and coffee) if I think I will not be able to access a bathroom. I'm not ready for piddle pads or depends either! I had to give up my pretty bras due to LE I refuse to let the pretty panties go to! I'm 53 and guess it was time for me to start forgetting things.
Hope you have a comfortable flight!
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Veeder-it could be a little atrophy from no hormones...
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Hello gorgeous ladies, I was wondering if anyone suffering short of breath with tamoxifen???? I was doing great the first 3 months of tamoxife, but starting months fourth all the side affects said d hi to me...
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Nas- is it at all uncomfortable to take a deep breath? Any pain/cramps/achy feelings in either or both of your legs - especially the calf? If yes to either or both questions, contact your dr ASAP. Use the after hours number if you need to. This can be a sign of blood clots in the lungs which is a known potential side effect of tamoxifen that can cause a boat load of problems including death. If you have any symptoms I mentioned this is not a wait until morning when they open type of thing. It’s a call now kind of thing.
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Hi Lula73,
If this is atrophy after only 7 weeks on this stuff, I hate to think about what will happen in the next almost 5 years. Yikes.
Hi Vagadoll,
I do the same thing and stop drinking water if I'm going in the car for a long time or not sure there's a bathroom nearby. Thanks for your good wishes for my flight. I'll be flying in October. Looking forward to vacation. Oh, I wish I wasn't high risk or I would quit the Tamoxifen.
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Good Morning Everyone,
Vargadoll, I too have some memory issues. I have always been a planner and my kids grew up with, "The Plan of the Day." I wasn't rigid, I could always change it but I felt better with a plan. Since being on Tamoxifen (started 2/14/18) I have noticed difficulty concentrating, difficulty with word finding, and just general forgetfulness. Totally not like me. I told my MO at my last appointment and she sent me to an oncologist/psych MD and she suggested Provigil. I am on day 2. I will let you know how it goes. I am not someone who likes taking medication but I really felt like my job was suffering.
On another note, I have this weird pain behind my right shoulder blade. It's the same side I had radiation on, but I finished radiation at the end of January. It's definitely not a clot, maybe muscle but I am just so paranoid now. Anyone else feel a grabbing pain with certain movements?
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Veeder- it could be the start. Are you experiencing any discomfort or needing more lube than usual during sex? If you put a finger or two inside is it nice and moist? Noticed any dryness? Noticed a change in your inner or outer labia size or projection?
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Any recommendations for dealing with hot flashes? Or in my case, a slow burn which lasts for an hour or so?
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Hi Lula73,
I haven't noticed any of those symptoms however a couple of years ago when I got really dry outside and inside I was prescribed Estrace Cream, which I have been using. Prior to using it I was just miserable, scratching, itching, burning and ready to tear my skin out. Really bad. Nothing helped.
I talked this over with the MO NP who said they wouldn't prescribe this to breast cancer patients but since I already am using it, it's ok. I have a follow up next month with the MO but will also talk with my Gyn and about it. I've cut down the amount I use and sometimes just put some on the outside, plus only use once a week inside, just enough so I don't go back to the way I was before. I thought the Tamoxifen blocks the effectiveness of estrogen so I guess it would be additional estrogen to have to block out of my system.. I'll have to see if I need to quit using it altogether.
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Lewhy- did you have a SNB? I had weird little pains and ended up being LE. I didn't realize you could get truncal LE. I thought it was just arms.
I agree with the shortness of breath Lula73! When I read that the first thing I thought was blood clot to the lung! Please get checked Nas!
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Lewhy- did you have a SNB? I had weird little pains and ended up being LE. I didn't realize you could get truncal LE. I thought it was just arms.
I agree with the shortness of breath Lula73! When I read that the first thing I thought was blood clot to the lung! Please get checked Nas!
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Nas, how are you doing--many concerns about your shortness of breath!
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Beavern, thanks for asking, it makes me feel so good knowing my sisters feel for me and care for me, my shortness of breath tiday is a lot better, but I just have a weird pain in my middle back, don’t know if it’s muscle pain because of hot flashes and sweating and getting cold wind, or is related to my short breathing.....
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Vargadoll, I just had a lumpectomy, no nodes removed, and then radiation. This pain is just the weirdest thing. It is across the bottom of my bra strap. I think it must be muscular because it gets worse as the day goes on. It doesn't hurt to take a deep breath but it hurts to laugh, cough and move in certain ways.
I am sorry I forgot the name of the person asking about hot flashes. My MO said there was a study that showed taking Vitamin E would help. I tried it for a few weeks and then forgot to bring it with me on vacation and towards the end of the week my hot flashes started to increase. So, who knows, maybe it works!
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lewhy, I have pain on my right shoulder and middle back, I know my shoulder pain is muscle pain becauze when I touch it it hurts more, the muscle is very tight andonly massaging can release the pain, I believe they are all radiotherapy side affects, I had double mastectomy but only the side that I had node removal and radiotherapy hurts...
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This is my first time on this thread but here I am. I don't know if I'm the only one that does this but now that I'm coming to the end of chemo all the fears I've pigeon holed away to get through it are coming up. I have exchange surgery in three weeks and will be starting Tamoxifen a month after that. I've been pain free from surgeries for months now and have to go back to being cut up with anesthesia, revisions, pain meds and unknowns. The Tamoxifen scares me too. I've made it through chemo without too much cognitive impairment but I've been out of work this whole 6 months and there's no real pressure to think. I'm starting Tamoxifen just as I return to my job. I'm a water treatment operator at a big municipal water district. It takes my brain! I'm a 54 year old woman surrounded by 35 year old men and have always had to be on my toes. IT just feels daunting Excuse all my scaries. This could just be because I'm on day 5 after chemo.....
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Lewhy- yes to shoulder pain on my radiated side. Went to physical therapy, which helped a lot. But I’ve been slacking on my exercises and did a bunch of weed whacking this past weekend, and boy am I paying for it now! My pain goes all the way up to my neck (my neck nodes were radiated) and sometimes even hurts when I yawn. As my BS says, “radiation, the gift that keeps on giving!”
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