All Aboard the "T" train! Starting Tamoxifen After Spring Rads

Options
iammags
iammags Member Posts: 216
edited December 2016 in Hormonal Therapy - Before, During, and After

A few of us that have just started (or will soon) hormonal therapy after Spring Rads. We thought that we could carry on our discussions here. We are on a long haul with "T" or AI's so why not share the ride with friends?

I just finished rads on Friday. I was so happy but kind of sad at the same time. I'll miss those great people that ran my cancer center. I still am red, blistered, and super itchy. I'm so looking forward to healing. #RadiateThis!

I'll start Tamoxifen on the 1st. I've been reading the other Tamoxifen topics and I'm wondering how this whole therapy will be for me. Will I have weight gain? Hot flashes? Stop bleeding? Pains? Worse? Or, will it be just fine? So many questions!

If you've just started "T" , just ended rads, or have any comments or concerns and just want to keep in touch, please join us!


· Share on FacebookShare on Twitter
«13456

Comments

  • kbutler
    kbutler Member Posts: 66
    edited May 2016

    Thanks for starting. we can just move on over. I finished rads last Thursday and will start the journey with tamoxifen also on the 1st.

    · Share on FacebookShare on Twitter
  • kbutler
    kbutler Member Posts: 66
    edited May 2016

    Thanks for starting. we can just move on over. I finished rads last Thursday and will start the journey with tamoxifen also on the 1st.

    · Share on FacebookShare on Twitter
  • iammags
    iammags Member Posts: 216
    edited May 2016

    Yea!, kbutler, we can share stories.

    · Share on FacebookShare on Twitter
  • cwayman650
    cwayman650 Member Posts: 102
    edited May 2016

    Hi. I'm glad you started this thread. I just seen oncology today and we made the decision to stop my Femara and start tamoxifen in a month. I'm really nervous. I've been thru all the ai's and this side effects were unacceptable. Between memory problems and joint pain it just wasn't working for me. Especially the memory problems. I'm nervous to start Tamoxifen but if this stupid cancer returns, I don't want to look back and wish I had tried everything.

    · Share on FacebookShare on Twitter
  • iammags
    iammags Member Posts: 216
    edited May 2016

    cwayman650- I'm sorry that you've had so many troubles on the hormonal therapies but glad that you found us here. There are a lot of us that are starting on Tamoxifen soon and it'll be nice to compare notes with each other.

    I'm getting a little nervous about starting T. I'm afraid of gaining weight and I know that sounds vain. But it's true. I'm hoping that I won't have any SE's at all. I'm going to ask my MO again what the chances of recurrence if I don't take it at all. I know I should take it, and I will, but I just want to be reassured again that it's the right thing to do.

    #CancerSucks!

    · Share on FacebookShare on Twitter
  • cwayman650
    cwayman650 Member Posts: 102
    edited May 2016

    iammags- Thank you. I'm really glad to have found this thread where we are all starting at around the same time. I'm also nervous about gaining wt. I'm at my heaviest right now and I had a liver cat scan this week. It came back that I have fat in and on my liver. Something called non-alcohol steatohepatitis. I never heard of it until today. I'm 5ft. 2 and 140 lbs. I just can't believe it. Sooo, I need to lose wt, and exercise. Going off the Femara may help, but I just hope the T doesn't make me add even more wt. Sorry, vent over. It's just been kind of stressful.

    · Share on FacebookShare on Twitter
  • iammags
    iammags Member Posts: 216
    edited May 2016

    cwayman650 I've never heard of it, either. I'm 5'4 and 156. I really, really don't want to gain more. My middle section is out of control. Oh, the joys of perimenopause! This whole thing has been stressful for me, too. But today I was thinking that it's about time to stop obsessing over it. So I'm going to try not to think of bc and stress and meds for the rest of the weekend. Wish me luck. :)

    Have a great weekend!

    · Share on FacebookShare on Twitter
  • Sher0402
    Sher0402 Member Posts: 51
    edited May 2016

    Hi all. I started tamoxifen on April 8th. So far so good. Mild hot flashes once or twice a day. But no other side effects. Best of luck to all of you starting tamoxifen soon!

    · Share on FacebookShare on Twitter
  • bluepearl
    bluepearl Member Posts: 961
    edited May 2016

    Been on it for a while now. Just some mild warm spells...not much else.

    · Share on FacebookShare on Twitter
  • SouthernSkies
    SouthernSkies Member Posts: 17
    edited May 2016

    Hi Guys!

    I finished radiation on May 18th and hopped aboard the T on the 20th. 7 days in and no side effects. I wonder how long until I feel the "heat"? I do have a lot of nervous energy after being so sluggish and drained during rads. Its a welcome change as it's got me back into the gym to work off the energy!

    · Share on FacebookShare on Twitter
  • gardengypsy
    gardengypsy Member Posts: 769
    edited May 2016

    Hi

    My doctor has me starting the Tamoxifen now; I am beginning 5 weeks of rads at the same time. I am having a hard time, mentally, with starting the Tamoxifen.

    I don't know what is scaring me more: the side effects or the long-term commitment to this drug.

    I know I have to start. Just need a push.

    ~gardengypsy

    · Share on FacebookShare on Twitter
  • tbalding
    tbalding Member Posts: 449
    edited May 2016

    gardengypsy, my MO gave me choice of starting tomoxifen at same time as rads or waiting. Have 1st appt with RO next week, so am waiting until then to decide. What was your MOs reason for having you start at same time?

    · Share on FacebookShare on Twitter
  • iammags
    iammags Member Posts: 216
    edited May 2016

    Even though I know that most people are fine on T, it's great to hear it.

    · Share on FacebookShare on Twitter
  • iammags
    iammags Member Posts: 216
    edited May 2016

    Ok, I did it. Day one on the T train. Let the good times roll.......:)

    · Share on FacebookShare on Twitter
  • kbutler
    kbutler Member Posts: 66
    edited May 2016

    just picked up mine up my 1st bottle. Praying for no SE or at least minimal.

    · Share on FacebookShare on Twitter
  • cwayman650
    cwayman650 Member Posts: 102
    edited June 2016

    Gardengypsy, I know what you mean about having a hard time starting it. When I first started Arimidex, (my 1st med), I think I sat with the pill in my hand for at least 5 min. It's just mind over matter I guess. I wasn't that way with my first day of aromisin or femur, but I bet I will be with T. It's the one I really didn't want to take. Scared of the possible big side effects.

    · Share on FacebookShare on Twitter
  • Scsa
    Scsa Member Posts: 26
    edited June 2016

    I started Tamoxifen the beginning of February. I have had no side effects. I didn't have radiation.

    · Share on FacebookShare on Twitter
  • iammags
    iammags Member Posts: 216
    edited June 2016

    Day 3 and nothing of note has happened. I'm sure that time will tell. Some ladies on other threads are taking tumeric and melatonin and other things to avert the SE's of tamoxifen. Are any of you?

    · Share on FacebookShare on Twitter
  • DisneyGirl16
    DisneyGirl16 Member Posts: 121
    edited June 2016

    I had my last radiation treatment last Tuesday (5/24) and met with my MO yesterday. He is gave me my prescription but doesn't want me to start it until July to give me a break between rads and starting T.

    I am so glad to hear that several of you are taking it with little to no side effects. Taking tamoxifen worries me much more than having radiation. Do any of you happen to know who is the manufacturer of your pills? I have seen in the other thread that some folks have better luck with their side effects on certain manufacturers.


    · Share on FacebookShare on Twitter
  • kbutler
    kbutler Member Posts: 66
    edited June 2016

    just started this week no SE yet. Mine is Watson

    · Share on FacebookShare on Twitter
  • cwayman650
    cwayman650 Member Posts: 102
    edited June 2016

    Did any of you experience side effects such as painful joints after quitting Femara? I stopped it about 3 weeks ago and my fingers, toes and feet are killing me. Just like I had before from the meds. I didn't have it with the Femara so I wondered if it's from going off of it. Thank-you

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2016

    My first official post! I didn't have radiation after surgery, but just started Tamoxifen about a month ago...mind if I come along for the ride? No crazy SEs just yet. My face and upper back broke out with acne so bad that I felt like I was 15 all over again. My onco said that will calm down once my body adjusts. I've also had significant thinning of my already wispy, baby fine hair. I'm naturally cold natured and I'm always bundled up in a cardigan and/or hoody in the summertime-frigid AC world of 100+ Dallas temps, but I have noticed less sensitivity to cold (which is a HUGE plus for me). No weight gain so far.

    · Share on FacebookShare on Twitter
  • mltdd
    mltdd Member Posts: 87
    edited June 2016

    I finish rads on Monday and will start Tamoxifen after. Picked up the prescription today. I also scheduled an appointment with the OB to discuss ovary removal so I won't be on it long (hopefully). I'm nervous about the SE. I got just about every possible SE during chemo. MO said there's an equal change for weight gain as well as loss.

    · Share on FacebookShare on Twitter
  • Wholenewworld
    Wholenewworld Member Posts: 29
    edited June 2016

    Hi all,

    I have been reading posts on this site since before my surgery, but this is my first post. I've never posted to any site before but like my user name says... I just finished rads last Thursday (wasn't so terrible) and my MO said to start Tam in 4 weeks but it would be great to start sooner if I'm ready. I dread Tamoxifen more than anything else. I take the smallest dose of anything and get side effects. Ugh. I'm jumping in though - I may even start the end of next week if I can talk myself into it! Glad to have others here that are starting around now.

    Every women I've talked to that has been on Tamoxifen has not had any side effects other than minor issues so I'm more positive about it than Iwas. Can't say I'm anxiety free though!


    · Share on FacebookShare on Twitter
  • tbalding
    tbalding Member Posts: 449
    edited June 2016

    Hi Wholenewworld. I'm currently in middle of rads, 9/21 then I'll be joining you on the "T" train soon.

    · Share on FacebookShare on Twitter
  • gardengypsy
    gardengypsy Member Posts: 769
    edited June 2016

    tbalding

    I wish I had seen your post a while back and sorry I did not reply sooner!

    I have no idea why she chose to start the T at the same time as rads. I will ask!



    · Share on FacebookShare on Twitter
  • PlanB58
    PlanB58 Member Posts: 157
    edited June 2016

    Will be getting my boarding pass in July after a few weeks off from Rads. Hoping to have minimal SE! I'm with you wholenewworld very nervous about this but feeling maybe I will be lucky in this!

    · Share on FacebookShare on Twitter
  • gardengypsy
    gardengypsy Member Posts: 769
    edited June 2016

    wholenewworld- A lot of what's here is written by women who've really struggled; it's a place to let it all out. Sometimes this can give an unfair perspective. ThIs drug affects all of us differently.




    · Share on FacebookShare on Twitter
  • gardengypsy
    gardengypsy Member Posts: 769
    edited June 2016

    I'm at 4 weeks. Started my T a few weeks before the rads began. I had some vertigo in the first week. Some joint pain. That's it. No more hot flashes than usual (I am 54, reached menopause)

    I have been having severe leg pain off and on after the chemo, but that's neuropathy from the Taxol.

    Manufacturer: Activis.



    · Share on FacebookShare on Twitter
  • gardengypsy
    gardengypsy Member Posts: 769
    edited June 2016

    cwayman650

    I think I've done ok with it, so far. Someone else here on these discussions said she thanked her T every day when she took it. I am doing the same thing, and I think it makes a difference.

    · Share on FacebookShare on Twitter

Categories