Bottle o Tamoxifen
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i started with Tamoxifen again, after a week of not taking it and don't feel tired. Hopefully won't feel tired again!
I am glad I reached out to the MO and asked him what to do. I will keep you posted on how I feel and fatigue.
And this Feiday I have my exchange to permanent implants, yay!
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JWoo, thanks for both those tips.
McKatherine, I had a 6cm cyst before my BC DX and it wasn't going anywhere. The GYN ONC recommended getting both ovaries removed because I also had multiple cysts on the other and everything was causing a lot of pain. Turned out the big cyst was outside the ovary on the fallopian tube, which is caused by endometriosis, so that will have to be monitored. I am happy with the decision to remove the ovaries and have felt much better since, though, so we'll just keep an eye on the uterus for now. BTW, I'm 48 and was perimenopausal at DX. Best of luck with your decision!
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RunFree16, thank you soooo much for your post a few days ago re: tamoxifen SE's. I've been on it for 10 days and have not had a single SE and am panicking that it's not working. My MO seemed to think it would hit me hard and fast, and I have read the studies that link more hot flashes to better results. So happy to see you say that your MO told you the SEs may not hit for a few weeks - that gives me hope. I don't see my MO for another 4 weeks. I also have been so incredibly itchy all over my whole body the past few days and am wondering if it's the tamoxifen. I had an allergic reaction to taxotere and this feels just like that, but milder this time. But I am in CA and we've had such a horribly dry winter so hard to know which it is. The timing just seems about right for it to be the tamoxifen.
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McKatherine- this is a response as a surgical nurse versus breast cancer patient- I have yet to meet anyone who had a hysterectomy with removal of ovaries and regretted it- even those who fast-forwarded into surgical menopause felt 100% better. Of course a lot of people have uterine fibroids, endometriosis, uterine bleeding and other horrors but I have not come across anyone mourning the loss of their uterus. Caveat- would be a young person of child-bearing age of course had to throw that in,
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Teamkim I see you've started rads and tamoxifen at the same time. There's nothing wrong with this, but I think most of us had one therapy at a time with a few weeks' break in between. Usually tamoxifen starts after rads is completed. If you get to a point where you're feeling a number of side effects, I'm sure your MO would be ok with you taking a break from tamoxifen until you're finished with rads. But here's hoping that you feel just fine! :-)
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Hi wyo.
I hate to disagree with you but must. Obviously woman who have a hysterectomy are happy to see an end to the problem that was the cause of the hysterectomy but not everyone is happy to lose their womb and or ovaries.
And some of the problems caused by the removal of the womb and ovaries only appear years later and may not be attributed to the hysterectomy because of the passage of time - like genitourinary prolapse.
My Mom "fast forwarded into surgical menopause" and she definitely didn't "feel 100% better".
I have been pondering the dilemma of what to do if Tamoxifen causes uterine problems for me as I view my womb as really important and don't know that I should sacrifice it for the sake of my boobies. It seems that boobies are highly visible and valued but the womb isn't seen and if you don't need it for child bearing it is considered disposable.
I don't feel that way.
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Yeah, Gemini, I questioned my MO several times about starting Tamoxifen at the same time I started rads. He said that the potential SEs are very different between the two and the one doesn't affect the other. Since I had already taken him on with ending my chemo with only a half treatment for the last tx, I kind of felt like I was being a know-it-all patient if I protested the starting of Tamoxifen with rads.... So I thought I would give it a chance and if something cropped up, I would call the MO and then I would have some evidence to present to the scientist (I love him, but he is all about the research).
I am missing the support of the chemo nurses, who were there for me 24-7 during chemo with lots of practical, trustworthy advice which dovetailed nicely with everything I learned on these boards. My RO doesn't communicate well, and his staff clearly don't volunteer to be helpful with SEs (I think they have been told to refer everyone to the doctor) -- so far I am doing OK with rads, only slightly pink, and I will be 1/3 done on Friday. Chemo was hell due to my allergic reaction to Taxotere, so I think everything pales in comparison for me. Ugh! The journey....
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So much better after the week without Tamoxifen. i don't feel tired like when I started it!
Tomorrow is my TE exchange. i am so nervous and excited at the same time!
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yeah Head!!! Good luck!!
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thank you, SchoolCounselor!
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Headeast: glad the tamoxifen break worked afterall! Wishing you a good day tomorrow !
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When I first started on Tamoxifen my overies -both sides- really were hurting. My Nurse Practioner ONC said I was ovulating- UMMM .. so I saw my regular Doctor and he said Tamoxifen is used for fertility for short periods of time and it can cause women to drop down more than one egg on both sides at a time so most likely that is what I was feeling. After a few weeks it went away.
I also was nauseas at first on Tamoxifen and so sleepy. A low dose Effexor helped me get rid of the night sweats so I could sleep. \
As the weeks have went by I have had less side effects. I still sleep more than I did before.
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Good luck, Headeast!
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Each has his own opinion and experience.
I still have my uterus but have helped remove many- of course as you said these are not cosmetic or elective procedures they are because they are causing conditions that affect quality of life. I would also like to point out that genitourinary prolapse can happen with or without a uterus particularly in women who have had vaginal delivery (or several).
I know I had aches/pains and insomnia before tamoxifen and as so many have said this is a place where people come to discuss issues, the people not here in some cases are dealing successfully with their unique situation just like we are dealing with ours.
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OMG I think I'm going to explode!!!! Ok so last week Express Scripts calls me to tell me they can no longer fill my prescription for Teva brand tamoxifen but they have plenty of the Mylan brand 10mg did I want that, well duh!!! I thought they were out of that pharmacist told me I needed to call my oncologist and have him call in a rx for the 10mg and they will fill it right away. On to this week I check online on the status of the rx scheduled to be shipped out on the 1/28, check on the 29th states scheduled to be shipped on 1/30, check this morning schedule to be shipped 2/3. I call to find out what the hold up is only to find out it won't be shipped until 2/4 and if I need an emergency supply I have to call my onc and have them call it in. SERIOUSLY!?!?!?! WTF!?!
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mstrouble that is truly infuriating! But I'll tell you what a doctor/survivor friend told me: Tamoxifen lasts for a while in the body, so missing a few days isn't really denying yourself its protection as much as you might think. But still--this Tamoxifen shortage has got to stop.
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mstrouble! Just what you didn't need! My brand is Nolvadex! I refilled 20mg tablets with no problem yesterday.
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run free- I agree for the life of me I just don't understand why there is a shortage to begin with, especially since they announced about a year ago that they were also using it for certain forms of lung cancers. I'm just totally bewildered.
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Thank you all for the warm wishes.
I had my surgery yesterday. Checked in at 5.30am to start surgery at 8. They prepared me, interviewed me, etc. the conventional 7 people in the OR plus me. Left the hospital at 4pm.
The PS saw me and marked me, asked me if I wanted to go bigger than my TE and I said yes and for him to pick whatever implant was better.
My TE were at 325cc and he could not add more. My implants are Natrelle 20, 550cc and the muscle pain is terrible. I am taking OxiCodone every 4 hours and doesn't really help. The cuts don't hurt, just the muscle.
I am wrapped in a large bandage and I am supposed to stay that way until I see him on Tuesday. Only sponge baths without making bandage wet. Instruction says no lifting and if with OxiCodone, then no driving and not making important decisions.
I guess my PS didn't think I would have pain and be able to drive to work, but getting larger implants have made me have a LOT of pain. It is even hard to type.
Good luck for the ones getting surgery this coming week. I am positive this pain is worth it.
I am on the squishy side now! Yay!
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Head, sorry you are in pain, but yeah for being on the sqishy side!! I'll be going there on feb 21st.
Hang in there it only gets better from here!
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Thank you, SC. Pain should go away sometime soon, I hope!
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headeast - did your PS give you any muscle relaxers? That should help with the muscle pain and hopefully help you get off the pain killers sooner!
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McKatherine, he gave me OxiCodone and Bactrim
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call and see if you can get Valium or flexerill.
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McKatherine, I might call tomorrow. I was feeling better and waited too long to take the next pain pill amd now I am suffering again.
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Evening, sisters! I used to frequent these boards back when I was undergoing treatment, but dropped off as I moved past my treatment. I've been on Tamoxifen for just over 2 years. Went through the usual weird aches during the first 3 or so months, but tolerated it well after that. Now I'm dealing with weight gain. I am heavier now than I ever have been in my life, and am about 10-13 lbs. over my pre DX weight. Ugh. Has this been a common experience for the rest of you?
Looking forward to chatting, and many thanks.
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marthah....Yes I've gained about 12 lbs and can't seem to lose an ounce.
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Hi
I posted this in another forum but this one might be more appropriate. I have been on Tamoxafin since August 2013. About a month after I started to take it I began to have these weird pains in my right hip and lower leg. It was a very sharp tingly pain at first and then the pain went away after a few weeks. Now I am left with no pain but a recurring stiffness and fullness in the hip and also in my ankle and sometimes in my knee. Sometimes it feels like my hip and lower leg is full and inflamed in the muscle but there is not really any pain. It also feels like my joints are stiff and they are always cracking. I did have a ct scan from my chest to my pelvis and it said no bone lesions a few months ago. I am wondering if is the Tamoxafin. I also have recurring tinnitus since starting it as well.
It is all very strange and I am wondering what to do with this.
Thanks.
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I've come to wave goodbye and say thanks to everyone who has given support and advice. Stopping T today and starting Femara next week - fingers crossed for a smooth ride!
Hugs and kisses to all!
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shoppygirl - I have had blocked/popping ears for about a month now since starting T.
Has the doc made any comments about the pain being caused by T? And any comments about the tinnitus?
Lahela - good luck with Femara.
Has any one had problems with blisters in their mouth since starting T?
I just noticed that the skin inside my cheeks has been peeling off for a few days - maybe longer - in a line where my teeth meet, on both sides. Its weird.
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