About-to-Start-Hormones Group

1…6791112…22

Comments

  • Springtime
    Springtime Posts: 5,355
    edited December 2008

    Cripes, I wonder if mine were on shore, dock, boat or in stream!!! I will have to read my report again, but I doubt it will be as easy to understand as this "fishing" analogy!

    · Share on Facebook
  • HopeForBest
    HopeForBest Posts: 58
    edited December 2008

    Hello Ladies,

    Hope everybody is doing well.

    I just came back from my first appointment with rad. oncologist. He said based on my path. report I do not need radiation. my oncologist told me the same but I wanted maximum security and insisted to see rad. All said Tamoxofin is what I need now. Am grateful and taking Tam for a week now. So far so good. Hope everything will continiue the same way.

    Tomorrow, I have PET scan. I hope it will be clear. Wish me luck there.

    I want to wish all the ladies Happy Holidays and All the best in life.

    Hope

    · Share on Facebook
  • shari1232
    shari1232 Posts: 161
    edited December 2008

    That's excellent news, Hope!  All the best to you on the PET and in every way!

    · Share on Facebook
  • Makratz
    Makratz Posts: 12,678
    edited December 2008

    That's awesome Hope!!   What was your dx?  Just curious.  Best of luck on your PET scan.

    · Share on Facebook
  • HopeForBest
    HopeForBest Posts: 58
    edited December 2008

    Thanks Sharie and Makraz.

    I had BLT, Right is LICS and left DICS, Stage1, Grade 3, No node involved.

    All the best for All

    Hope

    · Share on Facebook
  • KAK
    KAK Posts: 1,679
    edited December 2008

    That's great, Hope!  No rads is a good thing!  Merry Christmas for that, huh?

    · Share on Facebook
  • shari1232
    shari1232 Posts: 161
    edited December 2008

    Question for the group:  My lumpectomy was at the end of August.  I had a Mammosite balloon for 2 weeks in October.  Just now I'm noticing that the skin above my incision is discolored brown.  Kinda sorta looks like bruising but doesn't hurt.  Anyone else notice late-in-the-game discoloration?

    · Share on Facebook
  • HopeForBest
    HopeForBest Posts: 58
    edited December 2008

    Hello Ladies,

    Kathi, Sharie and Makraz thanks again for the wishs.I did the PET scan. The radiologist said everything is fine.Ophhhhhh!  I will see my oncologist tomorrow then rest over holidays  before going back to work. GOD is Great!

    Take Care Ladies and be strong, we shall beat this cancer!

    Hugs,

    Hope

    · Share on Facebook
  • Makratz
    Makratz Posts: 12,678
    edited December 2008

    Congrats again, Hope.  That's a huge relief!

    Now you can enjoy the Holidays a little more!

    · Share on Facebook
  • HopeForBest
    HopeForBest Posts: 58
    edited December 2008

    Thanks Makraz,

    How are you doing yourself? How is the Tamox behaving now? Hope the SE are now less.

    Hugs to All,

    Hope 

    · Share on Facebook
  • Makratz
    Makratz Posts: 12,678
    edited December 2008

    Hi Hope,

    The Tamox is behaving somewhat better.  My hot flashes have slowed down but have increased again since I am due for my period. I have been having muscular aches now.I still cannot loose any weight either.  I am really trying hard, strict diet and LOT's of exercise.  My gut is still there!  I guess it's all better than recurrence! 

    I wanted to check in with others regarding the split dose of the Tamox.  I know some of you are taking 10mg twice a day.  How does that seem to be working for you?  I am wondering if the side effects are less by taking it twice a day.  Let me know what you think.

    It's snowing here!  Of course it's supposed to snow again Friday witha minimum of 6 inches.....I have to travel to Boston that day for my Genetics test.  I also have to go back to Boston on Monday to meet with my breast surgeon for a check up.  Guess what??  More snow on Monday morning.  UGH!  I hate driving into the city when it's snowing.  With my luck the kids won't have school either............  Thanks for letting me vent!

    · Share on Facebook
  • creampuff91344
    creampuff91344 Posts: 15
    edited December 2008

    I am having a similar problem with starting Tamoxifen.  As I had problems taking an AI (Femara), my onc changed me to Tamoxifen starting today.  I noticed that lots of you are taking 10mg per day, and he prescribed 20mg.  In reading this entire thread, I had decided to start out taking one-half pill at night, and one-half in the morning, but wonder if the 20mg is going to be to much to start with.  Splitting the doage in half is another option, and only take at night.  Any advice?

    Judy

    · Share on Facebook
  • revkat
    revkat Posts: 763
    edited December 2008

    I started with 10 mg once a day for about a week and then added the other 10. The onco said she didn't see why it would need to be started slowly, but that there wouldn't be a problem doing it that way either. I take 10mg twice a day. Someone here said that caused less side effect, I don't know if that is true, but I am handling it well (just a couple "warm flashes" a day) so I'm staying on that plan. The pharmacist said it could be taken either way -- all 20 at once, or split.

    · Share on Facebook
  • KAK
    KAK Posts: 1,679
    edited December 2008

    I'm doing the split dose per my doc's suggestions - 10mg AM & 10mg PM -- & my SE's have been tame to non-existent.

    · Share on Facebook
  • Makratz
    Makratz Posts: 12,678
    edited December 2008

    Hi Kathi,

    Do you split a 20mg tablet or do you have 10 mg tablets?  I think it's OK to cut them (20mg) in half but am not sure.  I always thought if the pill was scored, then you could cut it in half.  My pills are not scored.

    Thanks for the info.

    · Share on Facebook
  • AccidentalTourist
    AccidentalTourist Posts: 365
    edited December 2008

    Markaz, I split my tablets with a little gadget you can get at chemists which cuts them neatly whether they are scored or not.  It only cost me £1.99 in the UK so it is not expensive.

    · Share on Facebook
  • Makratz
    Makratz Posts: 12,678
    edited December 2008

    Thanks Accidentaltourist.  I have one of those pill cutter (not sure what they are called).  I just wanted to make sure you could cut them.  My boys have ADHD and I cannot cut their pills in half, I think because they are time released.  I may try cutting them in half if the side effects don't subside.  Thanks for the info!

    · Share on Facebook
  • KAK
    KAK Posts: 1,679
    edited December 2008

    Makraz, I get mine in 10mg pills, but it's okay to cut 20mg pills in half for Tamoxifen.

    · Share on Facebook
  • kiya123
    kiya123 Posts: 24
    edited December 2008

    Hi

    I finished my radiation on 11th of December.

    After how many days normally we get started on Hamonal theropy? I got an appoinment of  my Onc on Jan 09-09 and I am very norvous about it.

    Kiya 

    · Share on Facebook
  • nancy258
    nancy258 Posts: 162
    edited December 2008

    Makraz, like KAK I was prescribed the 10 mg tablets and instructed to take one morning and one evening.  My SEs are also mild to non-existent.  I have a f/u with the onc in early January, and he may have me take the whole 20 mg at once since I'm not having any problem.  I saw my BS yesterday and she wanted to know why I was splitting it.  She thinks I should take it all at once.  Suppose to be more effective in one 20 mg dose.

    Kiya, my onc appointment was three weeks after radiation ended.  When I saw him he told me to take my time starting the tamox.  He said if I wanted to do mail order, no hurry in starting it.  I began the tamox on December 1, five weeks after radiation.  I don't think it's necessary to start immediately.  Some places I read said wait til you get your period to be sure you're not pregnant.

    · Share on Facebook
  • NancyD
    NancyD Posts: 3,562
    edited December 2008

    Kiya, I actually started mine during my radiation treatment. My onc gave me a few sample packs to use while my mailorder prescription was filled. He said it was OK to start them, and the rad onc concurred.

    If you're still pre-menopausal, the side effects may be disconcerting. But since I have already been through natural menopause, there aren't any side effects from the Arimidex that I haven't already felt. Hot flashes, night sweats, and a few arthritic pains. Three months, and the hot flashes have already started to ease up.

    I think all the anti-hormonal meds have similar SE's, but the degree to which they're felt is individual. Some women breeze through this the way some breeze through menopause. If the one your onc puts you on causes real QOL issues, there are alternatives to try.

    · Share on Facebook
  • Springtime
    Springtime Posts: 5,355
    edited December 2008

    Hi ladies, I posted this on another board, and then remembered this one!

    I will need to start hormone therapy in early 2009, after rads (Rads will be Jan-Feb). I wonder if I can ask you all a question. I have to decide between shots to put me in menopause and OOPHerectomy (surgery).

    So I am reading online about the ooph surgery, and they are talking about HRT. THis may be the dumbest question of all time, but BC people do not get HRT if they have ooph surgery, is that correct? (I am thinking that would defeat the whole purpose of it?) But I read something about giving low amounts....

    I will be 51 in May 09, and was "regular" up until chemotherapy. That just ended 6 weeks ago (surgery recently!) but I have not had a period since. I have hot flashes since chemo, off and on, but typically every day at least a few. I am also debating between shots to "make sure" I am in menopause and the OOPH surgery. Any thoughts on this also appreciated. My onc is thinking she would rather put me on an AI right away (she feels it would be safer for me than Tamoxifen, she feels I am "high risk" for a recurrence as there was 3.5cm left after chemo, and pathology showed some "vascular invasion"). 

    Thanks for any insights, if any of you have also gone through these decisions....

    Kiya, I asked my ONC today, and she felt I would be out of rads for a month before starting the hormone therapy. Sounds like there is some variation...

    Springtime.

    · Share on Facebook
  • lexislove
    lexislove Posts: 2,645
    edited December 2008

    Spring,

    I think that HRT is NOT advised for any woman with hormone + BC. Ovary suppression or removal. Correct me ladies if I'm wrong. Thats the thing about removing the ovaries, if you have crazy side effect there's not a lot you can do. That's why they recommend taking the supression shots for a bout 6 months to see how well you tolerate menopause. I posted on your other post, I'm currently doing this myself.

    · Share on Facebook
  • Springtime
    Springtime Posts: 5,355
    edited December 2008

    Lexilove,

    That is a good point, about "not a lot you can do" not like you can stick your ovaries back in. However, my ONC also was feeling the recent studies about the AIs being better. .... 

    On the other hand (from your other post) you are right, you get rid of the ovaries and you don't have the angst about ovarian cancer. 

    A lot to think about....

    Thanks for your thoughts! 

    Spring.

    · Share on Facebook
  • Wndalina
    Wndalina Posts: 98
    edited December 2008

    Hi folks!  BAck from vacation - great time!  I have now been on Effexor for a three weeks and love it.  I definitely feel the "effects" now and am doing quite well with it (oddly enough many told me I would gain weight, yet I feel more full and am eating smaller portions).  I plan on starting TAmox on Friday...  Hopefully this Effexor prep will aid me... (and offset the potential Tamox weight gain). PREmenopausal, so no other options here.  I will stay in touch.  Also, I am scheduled for the BART test on the 2nd of Jan.  That is the additional genetic testing after BRCA 1& 2.  Take care all - don't forget to sit back and relax some - we DO deserve that!  I am really ready for 2009 - what a doozy 2008 was!

    · Share on Facebook
  • KAK
    KAK Posts: 1,679
    edited December 2008

    Wendy, I think a lot of us are ready to ditch 2008!!  And I've been able to lose a few pounds with the Effexor/Tamoxifen combo, so hey, you never know.

    Lexislove & Spring, I didn't know about the rationale behind the suppression shots, but it's a good idea & my instinct from working in healthcare that you really don't want to entirely rid the body of all estrogen 100% by removing the ovaries if you don't have to.  You want to maintain your bone & connective tissue health by having some estrogren around.  That's why the hormone suppressors are good because the selective ones keep the estrogen away from the breast tissue but allow it to circulate to the bones.  Our risk for developing ovarian cancer is still smaller than our risk for recurrent BC.  My aunt had & survived ovarian cancer, so I suppose I should be freaked about it, but I'm not & I'm not planning to get them removed unless I have to.

    · Share on Facebook
  • Springtime
    Springtime Posts: 5,355
    edited December 2008

    Kathi, Yeah, the more I read, the more I am starting to think it may be best to leave the ovaries in. I need to research more and talk with my ONC again. I read something that the level of estrogen in the body is low when in menopause, but that the ovaries keep producing estrogen and maybe other "stuff" that the body needs, and the ovaries provide this, in the right amount, when the body needs it, all through your life. When the ovaries are out, it sort of messes up this system. 

    Thought it is a good point, when the ovaries are out, it really reduces the chance of Ovarian Cancer. 

    Cripes, this makes me bats!!!!  Surprised

    Spring.

    · Share on Facebook
  • Kleenex
    Kleenex Posts: 764
    edited December 2008

    I am CERTAINLY ready to be done with 2008 - not my best year!

    Interestingly, the original medical oncologist I spoke with wanted to give me Lupron shots to shut down my ovaries (45 and premenopausal), but the one I'm currently working with just has me on Tamoxifen, with no mention of doing anything to my ovaries. The one who wanted to shut down the ovaries also made no mention of the Oncotype DX test - he'd figured I'd end up with chemo, depending on the size of my tumor. The one I'm with DID have me take the test - I got an 11, and I was not offered chemo. My point is that there seem to be several different approaches out there...

    I would agree with the others - unless you've got a BRCA test result or something else that puts your ovaries at risk, it might be good to keep them for a bit, to see how things go...

    My medical oncologist wanted me to be two weeks out from radiation before I started Tamoxifen. I ended up going three: both to get my mail-order supply in and also to get a road trip to Tucson for Thanksgiving over with before any crazy side effects kicked in.

    How much does Tamoxifen actually cost? Due to all the fun I had in 2008, I've more than used up my deductibles in every category, so this first 90 day supply was "free."

    · Share on Facebook
  • Springtime
    Springtime Posts: 5,355
    edited December 2008

    Kleenex,

    WOW what a difference in ONCs. I was told by the BS "you may want to consult with a few ONcologists, it's more of a mixture of art and science than surgery".

    · Share on Facebook
  • StarWish624
    StarWish624 Posts: 101
    edited December 2008

      Hi, group. Late starter, here. Actually, I'm a October gal, myself. Had Chemo. first, then just finished Rads. last month. Onc. started me on Arimidex last Friday. So far, just queezy stomach, and achy bones. But, since it's rainy - that can cause some of the achy feelings due to the dampness. Who knows?

      I went to the Arimidex web site to look up the side-effects. BAD IDEA! Do they intend to scare us, or is it just a perk?

      One good thing - hot flashes can be warming in the cold winter time. (But tough if you have to keep taking off and then putting back on your coat every few minutes. Could we count that as exercise?)

       Oh well, I join you ladies, and am now in it for the long run. Cheers, and May 2009 be Golden for you all.

    · Share on Facebook

Categories