Bottle o Tamoxifen
Comments
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Wow Patmom,
Thank you for sharing your story. Although you are among the small percent that it happens to. You just confirmed for me that I am doing the right thing by getting the hysterectomy. As I said above, my uterus is a mess with fibroids and endometriosis. I'm just angry that I have to wait until rads are done to have the surgery. But, one thing at a time.
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regarding the vaginal dryness....yep!!!!! Chemo put me into full meno as well. Sex is painful and I can't use lubrication because they give me infections.
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Hi.
Does anyone have the opposite effect of Tamoxifen in increased vaginal lubrication to the point of soaking things? This is very concerning to me and I plan on asking my MO next time I see him. Seems the side effects show up slowly over time and I am always wondering what will be next.
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no dryness here. My eyes did dry out for a while, but that resolved itself, thankfully. The one big thing I've experienced on tamox was extreme irritability. My husband suddenly became the biggest idiot, and I had NO patience for my son. I wound up taking 37.5 mg of effexor and now I love my husband again and I enjoy my son. I guess I do also sometimes wake up in the odd hours of the morning and have a hard time falling back asleep - never happened before tamox.
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I haven't had a period since starting tamoxifen in January. Should I call MO or wait til my checkup in August. She did tell me lots of people get period symptoms but don't bleed, which is me. I get crampy a little bit but no period. I may be close to menopause, though, because I missed a couple periods last year before my BC diagnosis. Any thoughts?
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ndgrrl - I have experienced increased vaginal moisture with Tamoxifen, except in the few days leading up to my period. Then it is much thicker. It is very noticeable during sex (my DH is very supportive of it though). There are times when I think I have leaked urine (that happens sometimes when I sneeze, cough, etc. even though I am only 40), but it is vaginal fluid. I have started wearing a panty liner for peace of mind. Sorry I don't have a better solution.
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Corky - Thanks for the link on silent reflux. I have noticed those symptoms since I started the Tamoxifen but they are not severe. I am wondering if the daily baby aspirin could aggravate the situaton.
Ndrgrll - Vaginal discharge is a common side efffect. Good to ask the doc but don't worry!
Geosomin - No vaginal dryness here. I was worried about it but so far(7 weeks) I have not had that side effect.
Patmom - Wow, that is some story. You have a good attitude despite having had some consequences from taking the Tamoxifen. Good luck with your hysterectomy.
I have not seen my Gyn yet since starting Tamoxifen. My MO said she will probably want to monitor with ultrasound 2 x a year. I am going for my regular checkup in July so I will find out then. I really think there is something to just waiting for symptoms. I definitely don't want any unnecessary biopsies.
Lonnie - Good luck with your hysterectomy as well. It sounds like the right thing.
Thanks everyone for continuing to post and share.
Dawn
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DawnCT, yes, aspirin and ibuprofen can be problems with reflux. When I have to take them I make sure to have some food too, never on an empty stomach.
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lonnie713- as my husband pointed out to me: it's a good thing chemo made me menopausal, otherwise I'd be more resentful of the tamoxifen causing these side effects
gotta love the positive spin!
quick question about tiredness: has anyone seen improvement in this when you switched to taking tamoxifen in the pm vs the am?
thanks!
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uds17............I have been on Tamo for almost 3yrs. and I still battle the tiredness. Most, not all, afternoons I can easily take a nap. Sometimes it will last 45 mins. and sometimes a couple of hours. Oh well, if the Tamo does its job I won't complain about not having the energy I use to have. Frankly, I don't have the energy I use to have since this "journey" began.
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uds17, I found that I did not experience any relief from fatigue no matter when I took the dose. What I did find was that I did not have as many warm flushes thru the night once I changed over to a morning dosage. However, I still really did not sleep much until I started taking the 2mg controlled release melatonin every night.
I've been on a hiatus from Tamox for a month now, and sleep is pretty decent with no aids, energy level is significantly improved and my brain fog is gone. Have to say, my energy level is the best it's been since before dx.
My only problem off the Tamox is the continuation of allergies that surfaced during year two (in my third year now). I am seeing a clinician at a functional medicine center for the allergies and itching symptoms. Her take on this is that I need to address the allergies so I can get my body in better shape for returning to an anti estrogen rx....with the assumption that I will tolerate it better. Not sure I believe that, but am complying as a good guinea pig just in case she's right. Have had to give up dairy in this phase of the "experiment". Not fun. I will also be having a personal serum made for me based on my extensive allergy tests, which I will self-inject weekly, and that will supposedly help with the allergies and itching. I will be thankful!
I have found over the past two years that the Tamox has had more of a vaginal lubricant effect....a little gift, and definite improvement over post-menopausal dryness.....which I guess is not a gift of the AI's ....another reason I hope I do not have to switch to that.
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NormaJean and Lacey- thx for your responses. I am switching to nighttime dosing today, and I'm hoping my experience will be different from yours.
Take care.
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I've been on tamoxifen for almost two months. Other that an increase in vaginal discharge and some increase in hot flashes (I am post-menopausal) I have found I can't get to sleep at night. I've seen a lot of posts of women taking melatonin and just found this reference that Melatonin has been proven to help sleep problems. I'll be picking some up this weekend.
- In this randomized, double-blind, placebo-controlled study, the
authors investigated the effects of melatonin supplementation on sleep,
mood, and hot flashes in 95 postmenopausal breast cancer survivors.
Results showed that melatonin improved subjective sleep quality
significantly compared with placebo. However, melatonin did not have a
significant impact on depression or hot flashes.
- Melatonin can be a safe and effective treatment for breast cancer survivors who suffer from sleep disturbances.
Abstract:
0 - In this randomized, double-blind, placebo-controlled study, the
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I have tried Melatonin .. I bought the 5 mg. It does absolutely nothing for me. I have been having super freaking busy days at work and avoiding all the "drama" of "he said / she said" things on a daily basis and reading before bed. I can get to sleep, just don't always stay asleep. But lately, my busy days are such that I stay asleep just a little bit longer now.
I am off now till Tuesday (took an extra day for the long weekend) and in the morning I get up, let out the poochies and return to bed with a cup of tea and snooze a little. I am hoping to catch up on some long last sleep this weekend.
Has anyone else had luck with Melatonin ? I guess like everything else, it just depends on the person ..
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Arggggh....just lost my post about melatonin.
Bottom line, regular melatonin did not help too much, but I found that the 2 mg controlled release version was very useful for getting to sleep easily, and getting back to sleep during the night. I did often awaken with a bit of drowsiness, but the tradeoff was okay given the inability I was experiencing to fall asleep and return to sleep during the night. Of course, now that I'm on my Tamox hiatus I am sleeping fine with no melatonin and waking up with no drowsiness.
I do think it is worth a try, lizzieK, especially to prevent that awful inability to relax to sleep. Good luck and thanks for the link!
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HI,
I have been catching every virus out there since I started on Tamoxifen and it takes me longer to get rid of them.
Has anyone else experienced this? I also have heard not sure if its true that Tamoxifen can reduce your immunity?
Thanks to those who answered me about Tamoxifen and vaginal discharge. At least now I am not so worried it could be something bad. I just hope it doesn't get any worse.
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My very non-scientific read/guess about that, nd, is that estrogen is protective to/for our immune system, and Tamox messes with our estrogen, so we may be more vulnerable? When my skin allergy surfaced, my dermatologist who is very into functional medicine, told me it was due to the reduced estrogen activity, since it had protected my immune system. Would love to hear from someone with a more scientific explanation....
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our hormones effect so many things - that would make sense. I'll add that to my "to research while recovering from surgery" list.
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after 3 months on tamoxifen I still have many se. To battle the nausia I take zofran..constipation , citrate of magnisia, melatonin 10mg. To help with sleep...my periods have gotten worse and more painful. I hate to complain but was seriously hoping I would start menopause I am only 41 but have had enough thinking the hysterectomy might be better. The hot flashes started this week...I use some peppermint oil and water in a spraybottle.
Sorry to complaine ....I know its been a while since I have been on and am very happy for all that are doing welll...and I feel the pain of all that are not...my prayers and love to you all.
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MrsDarcy, et al....Just a reminder....my MO was quick to let me know that Melatonin at too high of levels for your system can have the opposite effect. No one knows for sure which dose will work best so he said start as low as possible and go up if needed. I actually found 0.3mg on Amazon and it works great for me. My mom has been on that dose for 20 years and said she sleeps like a baby! He said to increase a week or 2 at a time. You could even buy the 1mg which is more common to find and cut in half I would think.
ndgrrl---I hear ya on the lowered immunity!! I haven't had a cold in over 15 years and I caught one in Jan and one again in Feb! And that was WITH a flu shot!! I spoke with my dad who is a doctor and he said it's to be expected after having surgery. He said the immune system can take up to 2 years to bounce back to normal and that Tamoxifen is considered a form of chemo (which explains my chemo brain despite not having had chemo!) so Tamoxifen will slow your system returning to normal even more. And you have to take into account that we had multiple surgeries! I have also found that it's highly likely that I have developed allergies in the last 3 months. I am 50 years old and have never had allergies and very rarely a cold so I have to look at BC's treatments (surgeries and Tamoxifen) as the culprit.
Jeni72---Hang in there on the side effects. I've been on Tamoxifen for 15 months and found it took close to 8 or 9 months before alot of my side effects started to subside. I've found solutions for the joint/muscle pain and took Biotin for the brittle nails but it made my hair flat and greasy so I quit it. Would rather have good hair days than bad nail days!!
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lala1 - you mentioned that you found solutions for the joint/muscle pain - would you share what worked for you? I can deal with hot flashes, mood swings, weird dreams, etc. but the joint pain is so bad that I'm seriously considering stopping the tamox because of it.
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Jennie93---I tried a number of things but found a combo to work for me. One thing I did was add a 3" foam topper to my bed. Then per my MO recommendation I started Osteo Bi-Flex. I found this to not help at all! So I ditched the Osteo Bi-Flex and went to a holistic breast cancer doctor. He suggested turmeric (Gaia brand) and ginger, both anti-inflammatories which he actually prescribed for heart health but joint pain relief is an added bonus. Plus I added magnesium (Slo-Mag from Walmart) which helps muscles. Lastly, he suggested melatonin. I knew from my mom's doctor that you can take too high of a dose so I started with the lowest at .3mg (yes, that is 0.3mg which I could only find on Amazon) and found that it worked for me. For the first 9 months on Tamoxifen I had such joint/muscle pain that I slept about 2 or 3 hours total per night. Now I sleep a good 8 hours without waking. I will say this doesn't cure my fatigue that Tamoxifen gives me during the day. Usually around 3pm or so I sometimes feel SO tired!! But it now only happens a couple of times a week instead of every day and I can usually push right through it.
And just for anyone who is worried about taking turmeric or ginger or melatonin with Tamoxifen, my MO was very comfortable with it.
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lala1
I hate to be negative in any way but I think you should get another opinion about Turmeric (curcumin) and Tamoxifen.
http://community.breastcancer.org/forum/78/topic/815626?page=2
A lot of MOs don't mind using turmeric as a spice in foods occasionally but don't allow using it as a supplement.
Unless your MO can provide you with a study showing it is safe - err on the side of caution.
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I stopped Tamoxifen on last Tuesday which was two weeks before my reconstruction surgery according to my surgeon's instruction. I found my sleep got so much better since Friday. Before there was always hot flashes, woke up at midnight and even couldn't sleep at all. I couldn't have any coffee or tea in the afternoon. But now only after a few days no Tamoxifen, there is a big difference. I even tried having coffee in the afternoon, did not affect sleep at all. Life is so good without Tamoxifen.
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Just stopped tamoxifen so I can have stage2 of my diep and I'm feeling terrific. After verifying dates I just realized that the last time I felt this terrific was when they had me stop the tamoxifen before stage 1. In a way I should be happy that I feel this terrific but I am upset because I never realized that it was the tamoxifen that was making my life miserable and I have another 4 years
I guess its a small price to pay for more of a chance at life.0 -
Hi, I am curious- why do they have people stop Tamoxifen before surgeries. What does it do?
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I think it increases the possibility of having a blood clot form.
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I have the same issue NormaJean. I am a morning person so I get a lot done before the afternoon. I don't have debilitating SEs except for the fatigue, joint pain and weight gain. Such is life with BC. I have about 1 1/2 years to go. Diane
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Bounce---I have read as much as I can about Tamoxifen and turmeric. My holistic doctor who is also a breast cancer specialist from Johns Hopkins pointed me to a couple of studies that were done and he felt it was safe. My MO agreed. These are a couple of links that I got from him....
Curcumin Modulates Tamoxifen Response in Resistant Breast Cancer Cells. -- De
Curcumin induces cell death and restores tamoxifen... [Molecules. 2013] - PubM
I weighed my options and decided to give it a try. I would be curious to hear what other doctors have said. Anyone?
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Thought I'd contribute my experience with T. Started in May 2011 then went off May 2012 in an attempt to try to shrink a uterine fibroid that went from the size of a pea to larger than a golf ball. It's location caused heavy miserable periods and my iron was so low I got infusions Feb 2013. I went gluten and dairy free on the suggestion of my accupuncturist in an effort to shrink the fibroid. Apparently I misunderstood her because after weekly sessions for 6 months I asked her why it wasn't shrinking and she said "Oh I can't shrink it I can just help with the side effects" Ack! I stopped seeing her and scheduled surgery to remove the fibroid April 2013. My MO didn' like me going off T because she believe that my "unstructured cancer" can lay dormant for years and then come back with a vengence. Eep! So I went back on it May 2013. I don't sleep without out aid...no luck with Melatonin. Take Ambien once or twice a week and Unisom with doxylamine succinate (which is not Benedryl) as recommended a couple times of week, and then I try and sleep the other nights. Even on the drugs I'm lucky to get 5 hours. I have joint stiffness that gets worse near my period, and headaches at the same time. My skin is dry, but my vagina is extremely wet...like above some times I've thought I peed myself! I've just started with ear ringing that is sometimes really bad, and I plan to bring this up with my MO in a couple of weeks. I get blood tests every six months that do a full blood count, look for organ issues, iron levels, tumor markers, and sometimes thyroid. I've gained 20lbs can't seem to lose it and I run up to 15 miles every week. I take magnesium or I would never poop! I can go weeks without a hot flash and then suddenly I have them every hour for days. I heard vaginal atrophy can be a side effect and I think that is happening to me as sex is becoming increasingly uncomfortable. Some days I'm so fatigued I watch the clock at work fantasizing about going to bed
And I just have to say...I haven't been on here for a while. After treatment I just needed to ignore the fact that I have/had cancer. I got my second NED last week. But I seem to be going through a more emotional deal now. Almost easier when there's something to fight, but the duration and now this impending doom feeling I get sometimes is just overwhelming. Thank you all for sharing your stories and your personal details. Although I do try to stay positive, there is a certain blessing in finding similar misery. Not that I wish my SE on anyone, but at least I know I'm not in this boat alone!
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