Bottle o Tamoxifen
Comments
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I'm about to re-start Tamoxifen after taking a month off. I am supposed to do every other day for 2 weeks and see if my symptoms come back during that time. I was having headaches and dizziness after only being on it a month. Anyone else take a break and things get better after re-starting?
ninetwelve-I'd probably call my doctor about that response..not sure if that is a hot flash, especially with the pain.
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Actually, I think I accidentally took a Niacin pill instead of a vitamin C this morning. I have the chills now. Freezing cold. I should toss that bottle of niacin.
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lala, I just bought whichever ginger tea I could find. It did not seem to help with the nausea or vomiting. I know ginger does help some people, so hopefully it'll work for you. I do not drink soda at all; I pretty much drink a variety of herbal teas every day. Chemo put me into menopause, and I did not have nausea or heartburn on that. I also did not have the bloating or ankle/hand swelling. When I've gone off Tamoxifen for surgeries, the symptoms went away after about a week, and then returned once on the Tamoxifen for about 4 or 5 days. That's how I finally figured out where it was from. I am hoping the GI doc has some suggestions. I have only been on it for a year. I suppose I could put up with it for 4 more years, but there is no way in the world I will put up with it for 9 more!
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So far, the only side effect that I can directly relate to Tamoxifen is high blood pressure! Anyone else?? Also, just curious is anyone with arthritis thinks that the Tamoxifen may be making it more pronounced?0 -
tamoxifen definitely can cause joint paint, so I would imagine it could make arthritis worse. I've been getting joint pain relief by taking a combination of turmeric and tart cherry supplements and doing Nia dance for exercise.
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Nettie...absolutely. I take tramaol and it still doesn't relieve the pain.
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I am now 10 months into Tamoxifen - with little to no SEs now. I still have sometimes trouble staying asleep - but that could be the "hamster" in my head that never sleeps.
I also have the worst periods ever .. I will have it for about 1 week then have 2 weeks "free" and get it again. Or sometimes I have 40 days "free" .. it's all over the place. The intensity of these periods is nothing like I have ever experienced before. I can't say for sure that it's the Tamox or being pre-meno. Either way - it sucks
I am also extremely tired as of late. In bed at 8h30 .. and truly fall asleep at that time (it's "staying" asleep I have issues with). I have no energy or desire to exert myself more than I can in a regular day.
My sons are possibly moving out in the summer (both in their early 20's) and I am seriously contemplating selling my home and buying a condo. I can't see myself mowing the lawn or shovelling, or tending to the garden .. I have a big house and good front and back yards. I am ok with them moving out - I will miss them like crazy, but it's another step in life for me. I am just not sure I want to be tied to a house with 3 floors, lots of work, all by my little wee-self
Pre-cancer I would have said "bring it on" .. that part of me is very quiet now Amazing how C can alter your life in ways you expect, and surprise you with little changes that you didn't expect later down the road - and I am referring to emotionally and in regular life as opposed to medically.
Have a happy Tuesday everyone
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hi MrsDarcy -- I'm glad to hear your tamoxifen SEs have all but disappeared! :-) Just wanted to ask if you see a GYN currently and if this doctor is aware of your bleeding issues. I haven't had a period in a year now (no bleeding or spotting of any kind), but my GYN told me to call if I had any bleeding that wasn't a normal period. Not to alarm you, but you may want to run this by your doc if you haven't already, just to err on the side of caution. ;-)
Good luck with your downsizing -- that sounds like it could be very liberating!
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Who out there has had a prophylactic hysterectomy due to thickened lining and ovarian cysts from Tamoxifen? My doc informed my yestereday at my 4 month TVUS that my issues had resurfaced (last TVUS showed mostly resolved). He said he's now strongly suggesting a hysterectomy including ovaries and cervix. I'm not afraid of surgery but of afterwards like being hurled into surgical menopause. I'm 51 and going through what feels like perimenopause now....warm flushes while sleeping, sporadic periods, bloating, dizziness, nausea, burping etc. I've finally found some balance in my body and lately have felt really good so I'm really worried about full blown menopause. Can't take HRT and doc said something about maybe trying Brisdelle. Have to check with my MO if that's a good idea. He's planning a laparoscopic surgery with an overnight stay in the hospital. Anyone had this type? Trying to get an idea of things to do to prepare as well as what to expect afterwards. Suggestions are very welcome!! Boy, I hate this Tamoxifen!!
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lala1, I had the surgery 9 yrs ago, when I was 50, due to fibroids and ovarian cysts, not related to Tamoxifen. It was pretty easy. I was DX'd with BC last year. I was peri-menopausal when I had the HX. Heavy bleeding, sporadic cycles, cramping, head-aches. All of which were unusual for me. Dr slapped an HRT patch on me after surgery; my body didn't like the plastic. Quit after one week. After that, I did not use HRT except for a vaginal suppository for dryness; I only used that for a few months. I was scared of getting BC...but we see where that got me! I'm sure everyone is different, but for me, I guess my body adjusted pretty well. I didn't feel "hurled in to menopause", really. Maybe I was almost there already. I did have hot flashes and vaginal dis-comfort for a while, but that eased up. I am glad to have done it; one less thing to worry about. Recovery wasn't too bad. If you have a significant other, let them wait on you hand and foot for a few weeks!:). Good luck~
Tamoxifen SE's have subsided also. So, right now, all is good!:)
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Are there symptoms to this thickening of the lining? I haven't had a period since Feb, nothing..nada, zilch.
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Anyone with thyroid issues due to tamo ?? I have little to no SEs other then thickening of the lining and now thyroid slacking a bit
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Thanks, Keepthefaith. That was really helpful. May I ask what type of hysterectomy you had? I'm thinking abdominal since it was 9 years ago and i'm not sure they did lap back then. My doc said I'd start feeling pretty good around day 10 which isn't necessarily a good thing cause then you tend to over do things. I think what is bothering me the most is that I feel really good now and I'm afraid I'll feel really crappy for a long time afterwards. I just need to figure out how to convince my brain to quit worrying about what might never even happen. I'm just of those types who likes to know exactly everything that is going to happen so I can be completely prepared (I guess that makes me a control freak!) but being prepared is what keeps me calm and sane. My S-I-L offered to come for a few days to help out, because as wonderful as my DH is, he doesn't know how to wait on me hand and foot! Well, maybe for a few days...... Know how long I should ask her to stay?
Also, tangandchris, I haven't had any symptoms myself. It's one of the reasons I'm so reluctant to have the surgery. At my annual back in April, I asked my gyn about Tamoxifen increasing risk of endo cancer and that I'd heard I should have regular TVUS. She shrugged it off but agreed to do one right then and there since they had an opening. That initial US showed ovarian cysts, thickened lining, enlarged uterus and fibroids. She wanted to schedule surgery on the spot. I ended up getting a second opinion. This gyn did another US after a month which showed everything unchanged. Then he did another 2 months later which showed most of my problems had resolved themselves. So he agreed to wait 4 months. That US was yesterday and it showed cysts were back and larger, lining thickened even more and still with fibroids. He said it was just time and that I could keep having US and one day find I had beginnings of cancer or we could just solve it once and for all. So that's the plan for next month. I know alot of women have problems but I had none.
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lala1, it was laproscopic...a small incision in my belly button, which was glued up and NO stitches!! I was feeling pretty good after a few days, a week tops; but can't lift anything for about 6 wks, I think. I may have taken RX pain meds for a day or two and probably OTC meds after that for a few days. You do want to be careful not to lift anything or it could cause you to hemorrhage. So, designate grocery hauling, vacuuming, etc. I can't remember how long I had to wait to drive. Doesn't seem like it was very long. I was a little tired for a couple of months, but Dr said that is normal. I felt a little bloated and achy for a few days, but nothing severe. I'm sure you'll do fine. I celebrated my 50th a week after surgery and had friends and family over. If you have someone stay with you to help, probably 7-9 days is plenty of time. I think a MX is probably harder to recover from, but maybe not...
Good luck!! I think after all you have been through, this will be easy peasy!!:).
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Oh boy! that's pretty much how my doc said it would go! Maybe I should quit rolling my eyes at him when he says it will go easier than I think it will!
I was totally doped up for a while after MX. Didn't drive for about 3 weeks which was the worst part for me!! I HATE being dependent on others! Then I had lots of muscle spasms and such for about 6 months. Ended up on a long regimen of low dose Flexeril. Turned out I wasn't getting my ROM back quick enough. Once I did PT and massage therapy, I improved quickly. Then I bounced through exchange surgery so I'm hoping it will be a bit like that. I will have 3 small incisions in belly and then all will be removed vaginally including cervix so I get the dreaded vaginal cuff. I told my doc all I can think of is prolapse and everything falling out my hoo ha while walking down the street!! (That's about the time he starts rolling his eyes at ME!) Okay, I'm feeling alot better about this. Thank you!0 -
Glad I could be of help! PM me anytime, if you like. I said NO stitches, but there are internal dissolveble ones, I guess. I don't think I spelled that right! I know what you mean about being dependent on someone, but that's the best way for you to recover....and, remember, it's only for a little while. If you don't mind telling me, what is a vaginal cuff? I am guessing it is something to keep your "parts" in place?:) I don't remember having one of those, but Uro Dr and gyno checked my bladder first to and see if it was where it was supposed to be and said I was fine. Maybe it's something new...One thing I am very happy about, is that I don't have to have a pap smear anymore! Whoo-hoo! The psychological/emotional effect for me, wasn't bad at all. I had a mini melt-down several months later, out of the blue; it lasted about 15 minutes and I was over it.
Good luck, I hope you do well. Please post.
((HUGS))
Terri
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annika, how do you know your thyroid is "slacking"? Are you having symptoms or getting your TSH checked? I have an MO appt next week and am thinking of having my TSH checked, as I have had half of my thyroid removed about 30 yrs ago-a nodule. So far, I don't think Tamo is messing with it, but would like to know what to look for, in case. Thanks!
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yes my tsh is off the charts but all other levels normal , no symptoms !! The other possibility is radiation damage
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Keepthefaith--Yep, the vaginal cuff is what holds everything inside after you've had your cervix removed. Not everyone has the cervix removed, that's where the "total" hysterectomy part comes in. You must have had it removed since you no longer need pap smears, I'm having a total laparoscopic hysterectomy. When I first consulted with him, he said the vaginal cuff is the most common point of complications and even then it's a miniscule chance. My stupid brain just seems to latch onto that miniscule chance and blow it out of proportion! And for some silly reason, I find myself more afraid of surgical menopause than I was of breast cancer! At least with the BC everything moved so fast I didn't have time to think about it. (I need to learn to meditate!!)
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lala, yeah, the menopause thing worried me, too; but, I did have some peace of mind afterwards, knowing that I didn't have to worry about other more ( in my eyes) serious complications...one of them being cancer. So, I think the menopause was less worrisome for me and felt like the benefit out-weighed the menopausal SE's risk...which, in hindsight, it did. Even though the ooph didn't keep me from getting BC
. thanks annika~
Good luck!!!
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Has anyone had issues with blood glucose levels rising after starting Tamoxifen?
I noticed my levels were raised so went to a dietician, followed her eating plan for a month, and much to my surprise my levels are now even higher.
If I knew I could improve my diet I wouldn't be worried - but knowing I am eating as healthily as possible is depressing!
I exercise too.
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Bounce, I know that my glucose levels have risen (still within acceptable range) since being on Lupron and Tamoxifen. I thought that this was related to Lupron and being pushed into menopause? It could be an estrogen thing? Has your oncologist or PCP weighed in?
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I haven't spoken to either yet. Just got the results and honestly I just got depressed.
I have an MO appointment on the 16th and will definitely be asking about it. I am going to a new MO as the last one said Tamoxifen had no side effects other than stroke and uterine cancer and anything else I mentioned she looked at me like I was a lunatic (not being able to sleep well - mainly due to night sweats, urge incontinence, popping noises in my ears which settled down after a while, joint pain and brain fog and tiredness.)
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Bounce, I have one of those denying oncologists - gotta love them! I appreciate that the NP and trial nurse validate my concerns when she (onc) is not there... I feel like some oncs may be missing the empathy gene. They just want you to take the recommended drug with no issues. I almost feel like I am just a petri dish for my onc... I believe that my oncologist is very smart and would be tuned in if I were stage IV. Regarding glucose, I am at risk for type 2 diabetes - my mom and all her sisters as well as my grandmother developed it. I will be very interested in the replies that you get! Thanks for posting this. Hope your new oncologist listens and works with you to find the best solution. Hate to tell you, but I think this disease might be making me a lunatic... just kidding. Wishing you an awesome oncologist.
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Well I got a break from the Tamoxifen, called MO to tell them that since starting the Tamoxifen, my blood pressure had continued to rise and was now in the danger zone! His response "Well if you think it's from the Tamoxifen, just stop taking it"! Got to love it!!! Kind of like he was pissed that I'd think that could be the cause!
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Nettie, I think that some oncs do get pissed when you don't follow their program
It looks like you are not highly hormone positive? Maybe for you the benefit is not worth the risk. Glad he listened!? Best0 -
Keepthefaith---Look at it this way.....removing the ovaries lowers the level of estrogen in your body. So by removing your ovaries maybe you kept the BC from being much worse than it was! If you look hard enough, you can always find a bright side!
And I just got a call from my doc. Jan 20th is eviction day for my uterus and all her buddies. That gives me plenty of time to completely wig out over this! I may have to start drinking......
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lala, thanks for the positive spin on it!:) Of course, you must be right!!! Don't wig out. You know that these things are never as bad as we think they will be. This will be a piece of cake for a tough cookie like you. It will be here and done before you know it.
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Hi everyone........I read posts via my email but rarely have time to post so please forgive me. I wanted to comment on having a hysterectomy. I chose to have one (complete by laparoscopic) along w/ a second mastectomy. Purpose being I wanted to get rid of anything that might produce the estrogen. Well of course, that's not totally possible since the fat in our bodies & our adrenal glands also produce low levels of estrogen. Having said that, when I went for my first post hysterectomy annual my gyn told me I could still develop CA in the vagina just a very small chance like that was something I wanted to hear. OH Great !!!! So I continue to go annually since my breast score was so high and the CA aggressive. Surgery was a piece of cake. I am in my sixties yet after a hysterectomy & mastectomy an hour & a half after I was in my room, I was up & walking the halls. Went home the next day. So don't be afraid......you too will do fine.
I saw my MO last week and found out that Tamo has a shelve life of two weeks. I had been really sick with some kind of crud and didn't know what I could take safely w/o interfering with the Tamo.......something my onco had pounded into my little brain since the beginning......especially Benadryl. Well, now the thinking (his word) is that it's not that big of a deal as long as meds are not taken more than two weeks. I wasn't sure what antibiotics I could take. Grrrr.....this gets so frustrating.
I have also found out that yes Tamo can elevate your glucose and your triglycerides. Sometimes seems like we can't win for losing as if we haven't lost enough already!!!! Hope this info helps someone. Take care, chin up & try to keep smiling.
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I have been reading about the hysterectomies...thank you for sharing your experiences. I am having one on Tuesday. For a few reasons...I am lobular and I've read that lobular likes to travel,to the ovaries. Second, I want to be rid of all estrogen or most, anyway. Then I will be able to take femara. I am nervous, and don't like the idea of being a patient, not being able to drive or be 100% independent. I am hoping this is as easy as you all say! I will report back.
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