Bottle o Tamoxifen
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laralee67 I get both hot and cold too!
Tamoxifen definitely makes me tired. I take it in the evening and it helps me sleep. If I take it in the morning it makes me too fatigued to run.
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BethCon, how very scary to have your liver and spine now involved. I'm so sorry. It may be that Tamoxifen isn't right for you. I've also heard from many people that early side effects often fade. I hope the new MO can give you some good advice and insight.
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What a way to start a holiday weekend! I am 3 years CANCER FREE TODAY!!!!!! What a milestone. For those of you who know me, it has been a rough ride BUT I can say I am still here.
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Jo —That's AWESOME!!!!!!!!
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Hello, had my 5 year appointment with my oncologist today. He said with another 5 years of Tamoxifen the benefit would be 3% and did not recommend it. He said the 3% is not seen until year 15. Interesting.
I am glad, he explained the study to me and it makes sense.
Now just waiting for my US today. He said my scar felt fine and said call backs to look at scar tissue is normal and that anything after a 6 month all clear MRI would be unlikely.
Still nervous but less.
Kosh
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koshka - Glad to hear you don't have to do another 5 years on Tamox. Praying for B9 results on the US.
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Congrats Jo
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Ditto Jo!
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Congratulations Jo!!!!!!
You've been through a lot and its good to know it DOES get better!0 -
I never thought I would say this but it DOES get better. Now if it will just stay that way.
Hope everyone has a safe and fun Labor Day Weekend.
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Ok I'm hoping someone here might know.......I'm having my first ever colonopsy on Thursday, am I suppose to stop taking the Tamoxifen??? I known when I had my stage II surgery I had to stop taking it
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Sherry, can you call dr office Tuesday or Wednesday to find out (confirm) what they recommend? Had my colonoscopy pre-op Thursday, was told I could take Tamoxifen but you need to see what your dr recommends. Good luck, let me know how it goes!
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Sherry - I don't see why you would have to stop Tamoxifen but like Maddy suggested, call your doctor and see what he/she recommends.
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mstrouble16 I have never had to stop tami for that procedure. BTW you can not take it the day of the surgery if that makes you feel better. When I had my implants removed, I stayed on it as well. I would confirm with you doctor just for peace of mind.
jo1955- Congrats on your milestone. Doing a happy dance for you!
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Thank you ladies very much, will diffidently call Tuesday
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I'm starting Tamoxifen tomorrow, 20mg once a day, and am unsure whether it's best taken morning or night. My MO said it didn't make any difference, but I've read comments on here that say otherwise. Can anyone give me any reasoning for one being preferable over the other?
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Koshka I'm with you "F" cancer. Went in for my eye exam and was told what I already knew that chemo affected my vision. At 46 he wants me to now wear bifocals. I'll be keeping a close watch on my eyes lol Bethcon I hope you get some good news/plan from your new MO
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Melody,hugs. I am so tired of it. I swear if it is not one thing it is the other. This month, 5 years post lumpectomy, they find some small nodule that was there last year but stood out more this year...does not show on ultrasound as apparently it is 6mm. I had a breast mri in February nothing was there. Now..they are ordering another MRI.
In 2 weeks I also have an US for follo-up to Tamoxifen. As I am in Canada, they do not check you regularly unless you have syptoms (how "f" up is that)...anyway,,,I insisted after 5 years you are looking at the lining of my Uterus. Please and thank you and now I have an US up and coming.
The stress may kill me before this cancer will.
Hugs....lol
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lahela - I can only speak for myself. I take my Tamoxifen in the morning with breakfast. Early on, I had terrible stomach/nausea issues with Armidex and Femara and ended up taking Tamox. For that reason, I decided to try taking it with some milk to calm my stomach. I have been on the little white pill since Jan 2011 and I don't have any problems with it. My taking it in the morning, I may be avoiding the sleep issues that some have. So, the bottom line, you decide when to take it. Try it in the morning and if that doesn't work for you then switch to the evenings. Like a lot of other medications, you may need to give your body time to adjust to it. Keep us posted on your progress please.
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I've been on Tamoxifen for 3 years now and at first I did experience some side effects including the morning nausea. I switched to taking it at night and although the nausea wasn't an issue I felt it was interfering with my sleep.
I really don't remember when, but I switched back to morning and taking it with breakfast and it's much better.
I agree with Jo - you need to find out what works for your body/life style and go with it.
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Thanks Jo and Marie - had my first one with breakfast this morning and my stomach has been fine today, which is a miracle for me with meds! Positive start so far.
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Here's a puzzler for this smart forum. I am having crazy skin trouble for over a month now--could it be an exotic Tamoxifen side effect?
--Background: I finished rads on 5/3, skin came through quite unscathed, but I was very itchy for another 6 weeks, then it eased by mid-June. Started Tamoxifen 6/8, easy ride so far.
--All fine until early August, when the radiated skin started itching a little, swelled, got red. Skin nearby broke out a bit, pustules red but not itchy, but the radiated skin still itched like crazy. After 2 weeks I woke up with shirt stuck to nipple from weepy pus--yikes! Called RO who suggested 1) contact dermatitis from new detergent (same brand, different scent) and 2) bit of LE in breast. Changed detergent to super pure, went to beach in ME for the weekend, wore nursing pads
.--Back on Monday (now 8/19), noticed a few small itchy pale bug bites. Next day, 30, next day, 80. Assumed fleas, attacked house/self as unchemically as possible given contact dermatitis on chest. Friday 8/23, saw RO who looked at radiated skin and was shocked, showed a senior colleague who was also surprised, but neither thought it was dangerous aside from LE aspect; called derm on phone, who said it sounded like radiation recall dermatitis, rare post-radiation delayed/returned skin reaction almost always from post-rads chemo, which I didn't have. At derm's suggestion (did not see him), RO prescribed triamcinolone (steroid) cream for chest, recommended stopping Tami in case that was triggering the dermatitis. But RO didn't look at my legs.
--Triamcinolone worked like a charm, overnight--no more weepy nipple, skin cleared right up, no more itching, nearby skin started to clear up, seeming LE gone. But it didn't work at all on my legs (unauthorized use...), which just got itchier and uglier though never weepy; rash nowhere but legs, affected no one else in house, but some mildly itchy red spots appeared on arms. Derm had suggested legs and breast skin problems were related because skin can get "auto-sensitive," but the two areas behaved very differently.
--Finally went to nurse practitioner for legs on 8/27. She said it didn't look like flea bites, mites, scabies, bed bugs, sand fleas (from beach), shingles, fungus, bacterial infection; looked a bit more like poison ivy, but it came on differently and I wasn't aware of touching any. Started 12 days of oral prednisone (with RO's OK), stopped triamcinolone cream, resumed Tami (3 days' hiatus). Prednisone helped radiated skin even more, breast looks completely normal as if it never had radiation, but legs only mildly better; finally had a couple of days with only minimal itching.
--Two days ago, still on prednisone, legs started to get worse again--itching returned, blotchy, raised including below skin, more hives-like than before, rather than "bites." A few more red spots on arms, mildly itchy, but nothing like the situation on my legs; a few on neck, not itchy. Went back to NP yesterday and she's still stumped, but also thinks it's not worrisome, just very unpleasant. I suggested a rare Maine problem, browntail moth cilia reaction, but she thought that would have responded to prednisone. Trying OTC Zyrtec, but will show legs to MO on Monday if that doesn't work.
Sorry for the long tale. Have any of you heard of weird skin problems being a Tami side effect? Seemingly three or four different kinds of skin problems like this? I have never had reactive skin or allergies. There's no dermatologist near me and very long waits (months) for distant ones, but I hope my MO or RO can get me in sooner if needed.
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RunFree - Holy crap! I have never read anything like this. I can't imagine what you are going through. Sounds like the breast issue has cleared but now other areas need attending to. Hope between your RO and MO they can come up with a solution to get rid of this. Sending gentle healing hugs. Please keep us posted.
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RunFree.....so sorry you are dealing with such a persistent skin issue. While I have nothing even close to compare, I have had continual skin itching on various parts of my body since this summer......Been on Tamox a year and a half. I've been able to keep it at bay with an Aveeno cortisone cream, but it is always present either near my hairline, backs of my legs, inside of arms, etc. I have also had some pretty intense eye allergies all summer which I needed a steroid cream to keep calm. When my derm doc saw my eyes in June, she suggested that the Tamox interfering with my estrogen was causing the new allergies since as she said estrogen is protective to the immune system. So I wonder if that might be in any connected to what is going on with you. I really feel for you...skin problems are so terribly annoying...And yours have been intense! Hope your docs can figure out what is going on for certain. Good luck and keep us posted on your progress....hopefully to clear skin!
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Thanks Jo, and Lacey, that is highly interesting and I'm sorry to hear it. Now I've been snooping around online a little more (which I probably should have done before posting, but I was curious about individual stories anyway) and I did find an older thread here on BCO from someone who got a rash after changing Tami manufacturers. I got a new bottle 3 1/2 weeks ago with a sticker saying it was a new manufacturer, but it was Teva now and Teva before, so I'm not sure what that meant, and anyway the itching started 5 weeks ago. I've also found this: "Some cancer treatments cause itching. This may be itching over the whole body (generalised itching) or just in one part of the body. You may also have a rash. Some treatments, such as hormone or biological therapies, can cause an itchy skin rash. This doesn’t necessarily mean that you are allergic to the treatment." http://www.cancerresearchuk.org/cancer-help/coping-with-cancer/coping-physically/skin/managing/dealing-with-itching and "skin rash" is listed among "rare" (<1%) side effects for Tamoxifen here: http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/tamoxifen?script=true It's just weird that it only started up after a couple of months on Tami, and has taken several forms that respond differently, and the leg part really seemed to start as bug bites. I will let you know what my MO says.
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Question Ladies: Since being on Tamoxifen, and before that, Femara, my liver enzymes have been high high and then in 6 weeks the numbers can almost all fall within normal range. They did a CT on my liver in January and said it was just slightly enlarged and so was my spleen but no sign of cancer.
Since my lab results from last week show my liver enzymes up again, so another CT is order, I was just wondering if any of you had experience liver enzymes lab results higher than normal? I feel fine - my liver doesn't hurt when the oncologist palpates it and I'm not yellow.....is it just the Tamoxifen? My January bone scan was also clear which they did right after finding the lung mets.
If there is mets in my liver, I'm afraid it will be chemo time. I'm not afraid of chemo, been there, done that, just don't like why I would have to have it.
I do pretty good at forgetting I'm Stage lV but at times like this, it weighs heavily on my mind and depletes my energy. Sorry - just venting..........
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RunFree - I too have had skin issues but I think mine started after chemo and have continued years later. I've become allergic to adhesive in tape/bandages and Tagaderm dressings.
I've had some bug bite spots on my legs too - around the ankles - which the Dr thought might be bed bugs (we had just stayed in a Seattle hotel) but I've had some since without explanation.
I also have an itchy back which starts off with a tingle/burning sensation around the bra line. I've had many people look at it but there is nothing there.
I noticed yesterday - it was a bit cooler so I put on a long sleeve top - and I was having a hard time with sleeves itching me.
Like I said I'm not sure if mine is Chemo or Tamoxifen related and just writing about this is making me itch!
I hope you get some relief soon!
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justagirl - I am so sorry you are having to deal with the liver issues. I am not of much help in trying to answer your question but what I can do is be here for you and give you lots of support and hugs. Hopefully someone else will come along and be of help.
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Justagirl, I echo what Jo said. But someone may come along who's dealing with some of the same stuff. I assume you know about the Stage IV forum here on BCO.
MarieK, that is pretty weird about your skin issues. I've now read quite a bit about rashes, itches, and hives coming from Tamoxifen, including several more BCO threads. It's rare enough that some oncs don't buy it, but derms apparently do. I also talked to my pharmacist and found out that I did not actually have a brand change--he looked up what I'd had for brands all summer. The "new brand" sticker was a false alarm. But apparently skin issues can surface well after starting Tami.
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Justagirl- I empathize and wonder if my new pain over liver and nausea related to Tamoxifen too. I have been on it for about a month now. This weird pain is worrying me as I never had this before. Collar bone and lymph nodes Rads week three out of six, but will try to get them to draw some labs Monday. I know my gall blader has had stones for many years now. I only see a NP weekly who I do not trust to be on top of things. My liver was clean on CT before I stated all this so toxicity mostly on my mind. Hang in there , hugs from afar. I have a brother and 2 nieces in Perth.
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