Bottle o Tamoxifen
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I've been on the Tamox since early July and have experienced some side effects, but they have all been tolerable. After doing some research before I started taking it, I decided to split the pill in half, taking it twice a day. My MO was perfectly okay with it.
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Ladies-
Super Personal Question: have any of you experienced itching/weird skin issues in the vulva area since starting tamoxifen? I can't tell what is going on. It started in December- about a year into my Tamoxifen treatment. It isn't a yeast infection, not a bacterial issue,std, etc. I do have psoriasis, but have never had it there. It comes and goes. It is making me insane. I have read that your skin in that area can be affected by a decrease in estrogen, but not sure if T would really do that. I was in Tamo/chemo-pause, but have started my period again, and it seems to be worse around that time of the month.
If this is the case for any of you- have you had any success treating it?
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A couple of years ago (pre-bc) I had this exact itching. I was (and still am) perimenopausal. It was "vaginal atrophy" (swell term). Unfortunately I think the typical treatment is estrogen. At the time, I didn't do anything except use extra virgin olive oil to soothe the outside area. It just went away and has not returned. (And I don't feel like my vagina is atrophied and it seems to work perfectly well.... just sayin').
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jwoo-I've had the itching thing on and off too
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Hi Daisylover -
Where about in Massachusetts do you live? How are you handling the snow? I have heard of some people have problems with nausea while on the Tamoxifen. Was it you who was asking about side effects?
MarieBernice6234
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Hi Marie, It's a lot of snow - isn't it? The town of Bedford (where I live) clears it well. I live near the Burlington line! Do you get treated locally or go into Boston? I go to Dana Farber. It's crazy down there - snow everywhere.
I did mention that I have been experiencing nausea on Tamoxifen. It happens when I don't eat for a while. I eat nuts or a small snack, and it goes away! It feels a lot like my morning sickness did. Overall, the SE of Tamox are pretty manageable for me.
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JWoo -- I've had occasional itching ... I chalk it up to the tamoxifen messing with vaginal pH. Fortunately I haven't had this issue in quite some time.
Marie and Daisy -- I am nearby in Watertown. We've got some ice damming happening -- have a crew coming tomorrow to steam our roofs. It's going to cost a pretty penny. But we have filed an insurance claim (we have some water trickling in several areas and causing woodwork to warp) ... They said ice dam removal will be covered (after our deductible). Hope you two are managing ok. I'm just grateful that my husband and I both work from home and don't have to commute. I really feel for those who rely on the MBTA to get around.
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I have been on Tami 3 years. I am post-menopausal. From time to time I take myself off it for a week or 2 just to feel normal. I have neuropathy BAD in my legs which I attribute (as does my MO) to the Taxotere in my chemo cocktail. Just in the last couple months I started with the yucky itching and heavy drainage (so gross). I also got the vaginal atrophy (what an attractive-sounding diagnosis). No yeast or anything, just YUCK. Vagifem is an insertable pill that gives your vagina topical estrogen. Both my gyno and MO advocate this. I took it for a while 2 years ago and just sort of fell off it, but with the advent of the YUCK he put me back on it. Too soon to tell if it helps.
I have pain in my legs always. My feet feel as if the bones are all fused together (definitely the Taxotere). I always loved walking, and I just cannot do it any more.
But on a brighter note ... I'm still here!
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I have some itching as well - I was assuming menopause? I have never had it checked out...
Gemini, what a crazy winter... One neighbor has a front-end loader clearing their long driveway; another has people shoveling their roof due to leaky skylights; another has water leaking through the front door from the roof over their stoop. We are lucky so far - knock on wood. My car is just dead due to the cold? Can't wait to see what happens when it all starts to melt... The T is in need of an overhaul. I can't imagine needing to use public transportation to get around in Boston right now. I hope that your insurance comes through. I used to live in Watertown on Lloyd Rd! Wonder how their flat roofed garage is holding up? Yikes... Stay warm and dry.
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I had the most amazing tamoxifen dream last night. I was in a group of people in some weird nuclear winter scenario. There was snow everywhere and we were walking through this icy landscape. There were a ton of little babies in the group and we were all afraid they'd freeze to death. So, I was set up in an igloo and all the babies were placed next to my skin. They covered me with an animal skin and then all the babies slept in the nice warmth of my hot flashes!
I could see their little bodies breathing peacefully and thought "It's nice to be useful." Maybe these hot flashes will have a point....0 -
I started 2weeks ago and the hot flashes are terrible...but hopefully they will get better in time
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Hi Gemini4 -
I don't live that far away from you in Burlington. A lot of people are having their roofs shoveled in this area as well. I don't think too many people have lost their roof though. I am glad that I don't have to commute by public transit as well. I used to use it quite a bit though. The whole system does need to be overhauled though Lots of luck with the insurance company. How are the rest of things in your life?
MarieBernice6234
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HI Professor50 -
What exactly is a Tami dream? I have never heard of those before?
MariBernice6234
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Hi Daisylover -
We really are next door neighbors as I live in Burlington. You said that you live near the Burlington line. Do you go to the Lahey Clinic breast cancer support group? I know you said you are having your treatment at Dana Farber. There was a woman there who is having her treatment at Dana Farber as well. I have had all my cancer treatment at Lahey Clinic, it is my primary medical care center. Luckily, I don't have that kind of side effects (nausea).
I have a different kind of side effect - have had problems with constipation and have had problems with severe coldness and then some "warm flashes" on the other end. I was already on Effexor so that could be possibly keeping the "hot flashes" down to a warm one.
MariBernice6234
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Thank you for all your feedback ladies!
I am currently trying to not surgically remove the irritated tissues and/or lose my friggin mind. I have an MO appt on the 2nd and will talk to her then, and my OB/GYN after that if she doesn't have any input.
GirlPower- I had TERRIBLE neuropathy on Taxol. Mine went away (mostly) but it went all the way up to my thighs and shoulders. We lowered the dose, then stopped one treatment early b/c my ONC did not want me to be perm. disabled.
Sky- It will, and your SEs may even change (mine have) Effexor seems to help the SEs, but then has SEs of its own. You have to weigh that out.
I've always been a super-active dreamer, so not sure that Tamoxifen affects that for me. Business as usual, though the hot flashes did work their way into a few of my dreams while I was having them and they didn't actually wake me up. I am glad you had a positive one, Professor!.
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Hi,
I have been on tamoxifen for about 6 months now and. In chemopause for about 7months. I have lots of hot flashes and night sweats, which started on my second last dose of Taxotere. I don't know if hot flashes and night sweats are due to menopause or Tamoxifen. My question is how much longer of this? I don't want to take any other meds even though sometimes it is so bad that I wake up a few times at night.
What do you do if you miss a dose or two?
Also, I have this discharge (sorry tmi) that feels very watery and occasional cramps, like I used to have 1-2 days before my period. It's been like that for a few month now. I will book an appoint with ob/gyn just for a check
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MB, I do not go to any support groups - sometimes think that I should! I have heard good things about Lahey. It must be convenient! I understand how you could have constipation because I have Irritable Bowel Syndrome and tamox has pretty much cleared up the looseness for me
. Have you tried Metamucil? The pill form is easy to take with NO toxicity - it's natural. Just drink lots of water when you take the pill. It's soluble fibre. It helped smooth things out for me when I had issues early on... GirlPower, I have the yuck too! I just assumed due to menopause. Does the Vagifem help this time?
JWoo, sorry about the itching... I used to itch in perimenopause. NOT fun.
Lolis, I totally understand not wanting to add meds but Gabapentin does take care of nighttime hot flashes for me. In the beginning, I made my husband sleep with the window open even in the winter. He's a frugal guy, so it was doubly difficult for him, all bundled up worrying about the heating bill. Missing a dose is not an issue? I wouldn't want to make it a habit. And, I would definitely book an appt to check out the discharge. Better safe than sorry.
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I have been on tamoxifen for about 3 months now. I have had all sorts of fun side effects from it. I have had the hot flashes, the vaginal discharge, increase in my gastric reflux, and muscle cramps. All of these have been just nuisances. In the last few weeks, I have developed what I think is another one that I'm not even sure I know how to handle. I have become an emotional wreck. Mood swings like you wouldn't believe. I can't concentrate. My mind races all the time. I find myself obsessing over things. The slightest thing can send me into a crying fit. I feel like I have a constant state of PMS. I have heard of tamoxifen causing brain fog but I'm not sure that is what this is, even though I now suddenly have a hard time remembering names. Has anyone else experienced this? Is this from the tamoxifen? What helped if you did experience it?
Thanks. I feel like I'm going crazy.
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Jeanelle -- I didn't have your symptoms exactly, but I do attribute mood changes to tamox. I also had hot flashes, etc. and when discussing them with my doc, we decided to try Effexor. I've been on that now for 7 months and the side effects of tamox have definitely subsided. I had not previously had the need for an anti-depressant, and I was nervous about adding another pill to the roster, but I'm now really glad I tried it. I'm probably going to try to reduce my dose and then maybe go off in the summer to see what happens.
Good luck!
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Jeanelle, you are not crazy. My MO actually warned me that mood swings were one of the side effects. My husband was at that appointment with me, and I just looked at him and said "well if that happens it'll be your problem", lol. I have been lucky enough not to have experienced that, knock wood, so don't have any advice for you, but maybe discuss it with your MO. Maybe there is a medication that can help?
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Jennelle: I began Tamoxifen in late November 2014. I was experiencing mood swings, hot flashes, joint pain and fatigue. I met with MO in February, and she stated that at 3 months the drug has "kicked-in". She also prescribed a low dose Effexor, which seems to have reduced my moodiness and hot flashes.I would schedule an appointment with your MO to discuss your specific symptoms. Good luck. Lisa
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Thanks everyone for sharing your Tamoxifen experiences. I met with my MO on Friday, picked up my prescription on Saturday and have been glaring at the bottle every time I walk past it in the kitchen. I have set tomorrow as the day when I begin. Sounds like the 3 month mark may be when the worst of it hits. I will likely be going off for a couple of weeks around 3 mos. for a surgery to "clean up" from a failed reconstruction, wonder how that time off will impact things?
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Thanks for all your feedback. I have an appointment with my MO at the end of March. I'm definitely going to talk to her about this then. I feel like I have become the whiney patient because I keep calling them with one problem after another.
Thanks again.
Jeanelle
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One I started Tamoxifen, I switched from Zoloft to Effexor. It has taken a while to adjust but I think it's doing the trick-no SEs so far.
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Is Effexor something that a GP can prescribe? I don't see my MO until June. I am trying to see my GP for my annual check up and get a referral for a ob/gyn.
Last night was another night of sweats, it really disrupts the sleep and I feel so tired the next day.
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MarieBernice I too had constipation from tamox- a woman on this site reccd I order naturally calm from Amazon- it's a magnesium supplement- what a difference!!! I sleep better, less pain and aches overall and I go to the bathroom effortlessly without straining to the point where I wonder if I'm about to follow in the steps of Elvis.
Insomnia is better with it too-
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Lolis. a GP can prescribe Effexor- it's been a wonder drug for me as far as Tamox and lack of SEs go- I'm 7 weeks in on both
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I have a question for those of you that are on Effexor. I have took anti-depressants (Prozac) for really bad PMS after the birth of my son. It made me feel like a zombie with no sex drive at all. Do you have an side effects from the Effexor like this?
Thanks!
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Jeanelle-Tamoxifen makes me feel the same way, mood swings, anxiety over silly things, and memory issues. I've been on tamoxifen since august, and it has already killed the sex drive--so Effexor can't make it any worse!
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Jeanelle-I couldn't take Prozac because of the bizarre SEs. Effexor has been good so far. I started it the same day started Tamoxifen and the only SE I have is getting chilled.
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