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Bottle o Tamoxifen

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Comments

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited March 2015

    mhenz - my husband of almost 22 years is back to romance as well. Guess the cancer knocked his socks off. Now if I could get past the SEs I'd be doing great. Mine are just HFs which are tempered by the Gabapentin.

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited March 2015

    Hi All, wanted to introduce myself as I will now follow this thread going forward. I just finished RADs and had my follow-up with MO. I will be starting Tamoxifen next week. I will read through some of the older threads.

    I do have a question recording ovary suppression. When I tried to discuss ovary suppression (OS) with my MO she kindly dismissed it quickly. However I don't feel she adequately explained why she wouldn't consider non-surgical OS. I had a total hysterectomy about 10 years ago due to medical issues; however my ovaries were left in tact. I am trying to determine if my request to have OS is unusual especially since I am not sure what the benefit is of keeping m ovaries in tact. My MO conducted a test and determine my ovaries were 98% active, which they were surprised due to my age late 40s. I am of the mind set let's reduce the amount of estrogen as much as possible to further reduce the likelihood of reoccurrence. In summary I am trying to determine if there is a standard on OS and Tamoxifen or each center is different. I do plan on getting a second opinion. Any input is welcomed. I am just beginning to dig into this topic -- specifically. My MO has been great during my treatment. Maybe it was a bad day for her? But stll not exceptable to dismiss so quickly.

  • Annie88
    Annie88 Member Posts: 124
    edited March 2015

    mhenz- Sorry to hear about the headaches.Yes, I am experiencing some headaches too. As I get closer to my cycle they are more prevevalent. What was the RX you were given for this SE? I am taking the Watson brand of Tamoxifen, not sure if that makes a difference.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited March 2015

    ladyb1234 - I'm on lupron for OS. In my case MO highly recommended it in addition to Tamox because I'm very ER+ and have a history of ovarian cysts. I have to say, however, it makes the SEs from Tamox worse but for me the benefits win out. I would definitely get a second opinion.

  • ChristyJ
    ChristyJ Member Posts: 26
    edited March 2015

    I've been off Tamox for about 3 weeks because of my surgery (right ovary, abnormal cyst & both tubes removed). I'm going back on it tomorrow.

    Good news though-everything from my surgery was benign.

  • katcar0001
    katcar0001 Member Posts: 321
    edited March 2015

    Great news, ChristyJ!

  • ndgrrl
    ndgrrl Member Posts: 645
    edited March 2015


    HI,

    When I was first put on Tamoxifen I had really bad nausea, headaches where I would miss work and night warm ups. The doctor put me on Effexor which helped the night warm ups and after about 6 weeks the headaches stopped except for when I would ovulate and the nausea stopped at this time too. 

    Good luck, this drug does take awhile to get used to. I was just getting used to it and had to have my ovaries removed this month so next month I am switching to an Al, which freaks me out as much as taking  the Tamoxifen which I stared at for a week before I started taking it.

     

  • lala1
    lala1 Member Posts: 974
    edited March 2015

    ndgrrl--Is there a specific reason your doc is switching you to an AI? I'm only asking because I also had my ovaries removed (and everything else) in Jan. I spoke with my MO before the surgery about this and he said he would keep me on Tamoxifen for the full five years then reevaluate. He said if you start on Tamoxifen, he likes to keep you on it for 5 years even if you go into menopause and as long as you are tolerating it well (which I am). Then at 5 years, the decision is made to stay on Tamoxifen or switch to AI. He said another reason he wants to keep me on it is because it's good for your bones since, of course, menopause can make for brittle bones. I see so many removing ovaries and switching to an AI after just a short while on Tamoxifen so I'm worried my MO might not be completely educated about this. Would love you hear your doc's reasoning.

  • ndgrrl
    ndgrrl Member Posts: 645
    edited March 2015


    Hi,

    Lala- I have not actually spoke to my MO- I called and told his nurse I was having surgery and asked if I needed to be taken off Tamoxifen before the surgery. The surgeons told me I didn't have to but I wanted to check with him- He told me to go off it for a week before surgery and stay off it for a month and see him at that time. I also wonder why I am being switched- The nurse said it was because I was going to be post- menopausal. I will see him on April 3 and will question him then why.  My MO is just filling until the new one gets there and he is 75 I am hoping he is up on the new information.  I have no idea what to believe anymore. I had minimal SE on Tamoxifen other than hot flashes which Effexor took care of. So not looking forward to a change of meds.

  • lala1
    lala1 Member Posts: 974
    edited March 2015

    ndgrrl----This discussion also talks about what my MO told me....

    Breast Cancer Topic: Tamoxifen and now gyne problems..Need some advice..

  • MagicalBean
    MagicalBean Member Posts: 192
    edited March 2015

    I was really surprised to be prescribed Tamoxifen being that I'm 67 and have been post-menopausal for years. My MO said it was by far the best med for me and didn't want to discuss alternatives unless I had SEs. So far no real problems. Odd how varied out treatments are.

  • Brittany23
    Brittany23 Member Posts: 4
    edited March 2015

    I broke out in a rash on my upper thighs and radiated breast. I've been on the Teva Tamoxifen for over 3 months. I notice my breast felt itchy the beginning of Feb. like when I was having radiation. The red raised itchy rash started about a week ago on my thighs and now this weekend my whole affected breast is red and itchy. I'm afraid my MO might take me off of tamoxifen,its the only drug for DCIS.

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited March 2015

    Scottiemom1, thanks for replying to my question. As you can see I am very ER+ too, so I am a little baffled why my MO does not want to do OS suppression. I am looking into who I will go to for second opinion if my current MO is not willing to "listen" or discuss in more detail.

    I start Tami on Wednesday and would like to know some of the common SEs others are affected by. I do understand everyone is different but would like to hear from others. I am 2 months post chemo and 1 week post RADs. Fatigue is still a bear for me and in the throws of RAD meltdown on my skin, which I understand should begin to heal within the next week.

  • stage1
    stage1 Member Posts: 285
    edited March 2015

    Brittany, I broke out with Teva brand tomox also. I take only Activas brand and I am nearly SE free. I suggest you try another brand

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited March 2015

    I have the Teva brand. Is one brand better than the other?

  • Dblmocha
    Dblmocha Member Posts: 2
    edited March 2015


    ndgrrl  - I am so glad you posted! I have been on Tamoxifen now for 5 weeks and have been scouring this site for answers. I too, have had bad nausea and headaches and was wondering if this was normal. Hopefully in the next couple of weeks I will be back to somewhat normal. Thank you again!

    Teresa

  • uds17
    uds17 Member Posts: 100
    edited March 2015

    lala1- I've been on tamoxifen for almost a year. am having a total hysterectomy next month and MO wants to keep me on tamoxifen for 4 more years. he is one of the best in town and I totally trust his opinion. hope that helps!

    xoxo

  • crabbycamper
    crabbycamper Member Posts: 3
    edited March 2015

    I started tamoxifen 2/3/2015. SE include nausea, INSOMNIA, magnified depressive symptoms. Initially had whopping aches and pains head to toe--that has subsided somewhat. I am struggling with this medication. And it did not stop my periods---have had it twice since starting. The PMS migraine I used to get is much worse on tamoxifen. Am hoping my body gets used to this drug, since I've been told it's going to be for 10yrs.

  • florida2015
    florida2015 Member Posts: 46
    edited March 2015

    did u have an Oncotype? Interesting u were put on tamoxifen

    Have u noticed any side effects?

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited March 2015

    Sent email to my MO and she sang a different tune and is willing to discuss OS again. I did bring up the SOFT study and wanted her to explain the different options and why she had chosen only Tami without OS for me. I also was able to delay starting Tamixofen for 1 week. Fatigue and other SEs are still lingering and healing from Rads. I am not ready to add another SE right now!

  • Cindy_K
    Cindy_K Member Posts: 31
    edited March 2015

    For those of you who are on Tamoxifen, can you tell me who long were you on the medication when you noticed any of the side effects and what were they? Thanks a bunch!

  • lala1
    lala1 Member Posts: 974
    edited March 2015

    My SEs started within a month and was pretty much just muscle/joint pain while sleeping. My naturalist put me on Turmeric, ginger and magnesium and that has lessened to almost none. About a year after starting, I developed issues with bloating, burping, nausea and dizziness. It went on for about a year and then I had a hysterectomy due to Tamoxifen causing cysts, fibroids and thickened endo lining. The nausea and dizziness is gone and the bloating and burping are about half what they were. I have no idea if this is due to the Tamoxifen. I tend to think it was more due to ovarian cysts and fibroids although it's not gone completely and those cysts and fibroids are! I'm tempted to try a different brand of Tamoxifen but figure my SEs are so minor that it's not worth rocking the boat.

  • giotatsiliki
    giotatsiliki Member Posts: 2
    edited March 2015

    hello from beautiful Greece. I read a lot after surgery because one months after novaltex hurt my very bones, I have periods of depression and wanted to know why the drug is causing them. In the homeland of Hippocrates, we have learned that drugs cure but can not seem to do this medication because the pain is there to tell us that something

  • moderators
    moderators Posts: 8,793
    edited March 2015

    Dear giotatsilki, Welcome to the BCO Community. We are so glad that you reached out to this group of others who can offer the support that comes from walking a similar path. We hope that you receive some support and information here on the boards. You also may be interested in reading some additional information on our website. Here is a link to a page about Treatment Side Effects. When side effects get in the way of your treatment plan. Keep us posted. The Mods

  • lonnie713
    lonnie713 Member Posts: 131
    edited April 2015

    Hello warriors,

    Here I am again, back on the Tamoxifen forum. I switched to aromasin back in July and have been in excruciating bone pain, muscle and joint. I can't even make a fist, it hurts so bad. My MO gave me the green light to take a month off. I planto enjoy it to the fullest. Tamo 5/1 here I come.

  • ladyb1234
    ladyb1234 Member Posts: 1,239
    edited April 2015

    Started Tamo yesterday -- brand is Teva. Day 2 this evening. Are there any suggestions on the "best" time of day to take Tamoxifen? How long do SEs usually take to present themselves on average if they do at all? I do understand everyone is different, but wanted to hear others experiences.


  • katcar0001
    katcar0001 Member Posts: 321
    edited April 2015

    I have tried it at night and in the morning--doesn't seem to make a difference to me. I have not had any insomnia with it (no more than usual). I like to take it with my tea in the morning so I don't forget. I had few minimal symptoms the first couple of months but now in the third month I have very achy joints and muscles. Yoga and exercise help. For really bad days, I pop an Aleve or two. This is with Teva. Next time I go to the states, I am going to try a different brand.

  • CassieCat
    CassieCat Member Posts: 863
    edited April 2015

    I'm starting the Teva brand as well, on Monday. A little nervous, just like I always get before starting something new and wondering what the SEs will be. Fingers crossed for mild ones!

  • lala1
    lala1 Member Posts: 974
    edited April 2015

    For the achy joints and muscles try a combo of turmeric, ginger and magnesium. That combo got rid of my pains 100%! And as a bonus, it looks like the magnesium eases my night sweats!

  • annika12
    annika12 Member Posts: 92
    edited April 2015

    I noticed a big difference in a positive way with taking it exactly the sams time and not forgetting !!! I take teva in the early morning and have no side effects (other then uteral changes that could also be due to many other things :( ) !! I thought tumeric was not ok to take with tamoxifen? ??

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