Hormonal Treatment for Stage IV

Options
1…4950525455…61

Comments

  • car2tenn
    car2tenn Member Posts: 515
    edited July 2014

    Da DAh!!!  wonderful news....I will keep that news in my brain as  I continue to believe and advise others that there really is a difference in the brand name and generic....Big money is behind the push to generic and so you have to dig to get to the right information.  So happy for you.  Carolyn

    · Share on FacebookShare on Twitter
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2014

    I appreciate the discussion of brand name vs. generic. For me, generic has been fine (first Anastrozole, now letrozole). I do think that both are worth trying if you have issues with one vs. the other.

    Caryn

    · Share on FacebookShare on Twitter
  • Valerie5746
    Valerie5746 Member Posts: 111
    edited July 2014

    Hi Lynne,

    I am so sorry. That s so discouraging and must have been an awful day for you. I have had those days and just fel in shock and dazed for some time afterwards until SOMETHING in life knocks on the door and says "life is still here , dont ignore it" but I have to let myself be sad for awhile. Thats ok too. I get my tx at Tufts in Boston and have full confidence that the Boston cancer machine will come up with something for you. Until then, try to enjoy the sunshine.

    Love, Valerie

    Hope to hear from you soon

    · Share on FacebookShare on Twitter
  • SusaninSF
    SusaninSF Member Posts: 1,213
    edited July 2014

    Fantastic news Virginia!!!!

    · Share on FacebookShare on Twitter
  • Vadre
    Vadre Member Posts: 225
    edited July 2014

    Lynne,

    I am so sorry that you didn't get better results are so alarming. Not being in control of what is going on in our own bodies is so frightening.  I'm glad that you have a strong second opinion to check in with when you have bad news. I know my "ace in the hole" helps me think things through, even when her initial recommendations differ from my MO. They bot tell me of the bag of tricks that is there for us. I know that you have already used many different AIs which makes this even more upsetting. I hope that Dana Farber had some good options for you. 

    I will be sending positive vibes your way and holding your hand tight while you evaluate your options and make your choice. We are all here, holding you close and ready to help in any way we can. If you want to "talk" over options I'm sure any or all of us would be glad to help. You have been through so much and are so strong! Don't forget that you have our love & support. 

    Gentle hugs,

    Virginia

    · Share on FacebookShare on Twitter
  • skylotus
    skylotus Member Posts: 304
    edited July 2014

    So, I'm on this thread because I get two shots in the bum, one in each cheek of Faslodex because my (sorry, the, the cancer, I am not taking ownership of it!!) cancer is ER+.  

    I, for some reason, think this is a slow growing cancer, so imagine my surprise when it was revealed last Wednesday that I also have now brain mets!! Only 4 spots, but still....my brain? Why not my liver?

    Just a little frustration that nothing seems to be slowing it down. Start brain rads mañana. Maybe better luck next set of scans/tests/bloodwork, etc.. 

    · Share on FacebookShare on Twitter
  • auroaya200882
    auroaya200882 Member Posts: 942
    edited July 2014

    Sorry to hear about your progression but welcome to the Stage IV forum. There are wonderful people here. I have bone mets not brain but I'm sure others with that type of dx will soon come in and share with you. That;s right! Do not claim ownership, IT is the horrible monster that attacked us innocent bystanders. Hope the rads will kick those mets to oblivion. Sending you positive vibes.

    Aurora

    · Share on FacebookShare on Twitter
  • Lynne
    Lynne Member Posts: 641
    edited July 2014

    Thank you for all your kind words everyone.

    I got the same opinions from both oncologists of what my next treatment should be. Apparently, the new hormonal clinical treatments have to be the first hormonal treatment you get, so I don't qualify. They have both decided it should be Xeloda. 3 pills twice daily, 2 weeks on, one week off. It's the first time I'll be on a chemo. The most common side effects are diahrea and peeling of the hands and feet. Hopefully, I won't get them too bad. I'm also staying on the Zometa, but instead of monthly, I'll now be getting the infusion quarterly. I won't be starting the new treatment till August. I have to wait till I have my "chemo talk" with the nurse.  Praying that this works. 

    I started having right side pain on Thursday with internal charlie horse pains, just below my rib cage. I told my oncologist about it. She thinks it's my liver. I have a 3 cm tumor on there, as well as many smaller ones (last scan showed 2 tiny ones!). She put me on a higher pain killer. It worked. Today I thought I'd try skipping my afternoon dose. It hurts a little, but not like it did, and no charlie horse pains yet. Think I'll try skipping it tonight too. Hopefully, it doesn't return to that extreme, any time soon!

    Wish me luck on my new endeavor!

    Lynne

    · Share on FacebookShare on Twitter
  • skylotus
    skylotus Member Posts: 304
    edited July 2014

    Hi Aurora!

    Thanks! I was diagnosed Stage 4 last summer, fifteen years after original diagnosis, and have watched the disease progress ever since. I just got through reading all 99 pages on the brain mets thread...so I kind of know what I may be in for. :-/

    · Share on FacebookShare on Twitter
  • birdlady222
    birdlady222 Member Posts: 276
    edited July 2014

    Gentle hugs to those of you experiencing progression and all that goes with it.  New meds, new treatments, waiting for treatment, second opinions...it can make your head spin.  We are all here to offer support and understanding, and hold your hands through these trying times.  There are so many treatment options out there, and I hope for each of you that you find and receive the ones that are just right for you!

    Wishing you each comfort...

    Birdlady

    · Share on FacebookShare on Twitter
  • car2tenn
    car2tenn Member Posts: 515
    edited July 2014

    All of you are so special...I learn so much...For example, lately, I had been thinking that I don't like ownership of something so awful as breast cancer.  I mean it has happened despite my best intentions and preventative care...and it is stage 4 but I don't think I need to wear that title like a hat.   I want to embrace positive hopes and intentions...I am so impressed with Skylotus dealing with it positively for 15 years.  That has to be jolting to think it would go on in the same non progressive state and yet it sneaks ahead of the game plan.  This forum certainly helps me and I am so grateful to be able to come to it as a resource . My family is supportive but they don't have the knowledge that people on this board have..Come to think of it I learn more here than I do from treating MD's.   And to Lynne, good for you speaking up and getting the right level of  pain management.  IT can be a difficult task but one that is so worthy to attempt.  I actually have frequent pains in my ribs and I take mild tablets occasionally....thinking of each of you strong brave ladies. Carolyn

    · Share on FacebookShare on Twitter
  • Valerie5746
    Valerie5746 Member Posts: 111
    edited July 2014

    Hi Lynne, Carolyn and all my new found friends!

    I am so impressed Lynne that in such a short space of time you have settled and accepted such difficult news. And Carolyn I couldn't agree more regarding the need for pain mgt. There is no shame in asking for pain meds. Not having them means pain, depression feelings of helplessness and despair. We don't get better with negativity flying around. They have helped me so much and I never take more than prescribed but I don't take less if I have ANY pain at all! Remember we matter, we count and there is no place for pain if we can help it! Be well oxoxoxo, Val

    · Share on FacebookShare on Twitter
  • SyrMom
    SyrMom Member Posts: 862
    edited July 2014

    skylotus ... what prompted you to ask for a brain scan?  Were you having symptoms?  Other than the radiation are they changing your treatment now?

    · Share on FacebookShare on Twitter
  • Bluemnm
    Bluemnm Member Posts: 1,078
    edited July 2014

    hello all,

    I just started taking aromasin last week and I have been having trouble sleeping since I started.  Does anyone else have this problem?  Do you take something for it?   Me and sleep have always been best friends so this is sort of new to me I've never had to take anything to help me sleep before.  

    · Share on FacebookShare on Twitter
  • skylotus
    skylotus Member Posts: 304
    edited July 2014

    @ syrmom, Hi! I asked for the brain MRI because my tumor markers have been climbing non-stop. And I figured there was something we just weren't seeing. And that was my brain. I actually wanted/hoped to rule it out as a possibility, but that would end up not being the case. I have been seeing progression in all other areas all along. But really, no symptoms. Headaches maybe, but the drugs for back pain masked that somewhat too. It's truly one day at a time. 

    · Share on FacebookShare on Twitter
  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited July 2014

    Skylotus - as they say here in New Zealand...bugger.  Hate seeing you go through this.  

    Hugs to you,
    Terre

    · Share on FacebookShare on Twitter
  • Valerie5746
    Valerie5746 Member Posts: 111
    edited July 2014

    So sorry to hear that Skylotus but what an intuitive move to ask them to check your brain out! well done! Very scary result though. At least you now know and can treat it. Was your onc surprised? Its been a long journey for you and I wish you all the peace and love you need to face yet another challenge xoxoxox Valerie

    · Share on FacebookShare on Twitter
  • SyrMom
    SyrMom Member Posts: 862
    edited July 2014

    Wow, Skylotus, but good for you for being persistent!!

    · Share on FacebookShare on Twitter
  • Andi67
    Andi67 Member Posts: 423
    edited July 2014

    Hi Skylotus - I agree - good for you for trusting your intuition and being persistent....it's amazing how often you really do have to be your own advocate. You are in my thoughts.

    Andi

    · Share on FacebookShare on Twitter
  • skylotus
    skylotus Member Posts: 304
    edited July 2014

    Hi Kiwi, Valerie, syrmom and Andi, thanks for your kind words. Yes, we really have to be our own advocates! I do not believe my Doc would've ordered the brain MRI, had I not asked. So, hopefully detected them early and things will turn around! LUV you guys coming here and sharing! Namaste.

    · Share on FacebookShare on Twitter
  • WanderingSpirit
    WanderingSpirit Member Posts: 122
    edited July 2014

    Sorry I've been MIA. My daughter went into labor on her own on Sunday July
    27 and he was
    born at 12:57 a.m. Monday! So he's a July 28 baby but 57 minutes. She
    and my grandson are doing well. He was 8 lbs, 12 oz and 21 inches long!!
    This is her and her husband's third and last! I'm a GiGi of 3! They are
    all 23 months apart! Girl, boy, boy!
    Virginia, wonderful news!!!
    Skylotus, I think I spoke to you on another thread. I'm sorry your news wasn't so good but never give up hope. I'm trying not to.
    My PET scan and MRI are now on August 18th, my onc appt. that same week. I'm trying to stay positive despite the dumb tumor markers going up AGAIN.

    Bluemnm, I'm on Trazadone for sleep. It's an antidepressant but my doctor put me on it a few years ago because I'm one of the worst sleepers around.

    · Share on FacebookShare on Twitter
  • auroaya200882
    auroaya200882 Member Posts: 942
    edited July 2014

    Wandering, Congratulations grandma! That is so wonderful to be there to welcome your newborn grandson. I still remember almost three years ago when I was in the delivery room with my daughter and saw my grandson for the first time. He is my first and only so far but once my daughter graduates from law school I will be demanding a grandaughter! Just kidding. I am glad for you and your family. And tood luck with your scan results.

    Aurora

    · Share on FacebookShare on Twitter
  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2014

    Congrats Wanderingspirit!  Grandchildren are such a blessing!  Enjoy your new GS and try not to think on your scans, the next couple of weeks will pass quickly for you I'm sure.

    Skylotus, so glad you had the MRI and found those little beggers and here's hoping the WBR gets rid of them!

    Woohoo Virginia!!  Great news!!!

    Kiwi, bugger is said here a lot as well......lol.....actually it was actually the favorite swear word for a couple of generations.

    Been fighting a darn chest infection that just doesn't want to go!  I'm on the second round of anti B's so hopefully by the time these are finished all will be good.

    Love n hugs all!   Chrissy

    · Share on FacebookShare on Twitter
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2014

    wanderingspirit,

    Congratulations! As you already know, being a grandmother is the best. My grandma name is Mimi. I love hearing what others choose for their grandma name.

    Caryn

    · Share on FacebookShare on Twitter
  • auroaya200882
    auroaya200882 Member Posts: 942
    edited July 2014

    Chrissyb sorry to hear you've been having chest infection. If it's not one thing is another I guess but as long as we are alive and can enjoy some minutes of peace everything's alright. Hope the antib's work their magic for you soon!

    Aurora

    · Share on FacebookShare on Twitter
  • Bluemnm
    Bluemnm Member Posts: 1,078
    edited August 2014

    wanderingspirit, 

    Congrats on the new grandchild!  

    I will have to talk to my doctor about putting me on something like that for sleep, thanks for the advice.  

    · Share on FacebookShare on Twitter
  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited August 2014

    congrats, WanderingSpirit!  Great news!

    · Share on FacebookShare on Twitter
  • Lynne
    Lynne Member Posts: 641
    edited August 2014

    Congrats Wandering Spirit! I have 3 grandchildren myself a 4 yr old girl (from my older son) and 3 yr old and 1 1/2 yr old boys (from my younger daughter). They are the ones who can always make me smile! : )

    Lynne

    · Share on FacebookShare on Twitter
  • Essexman
    Essexman Member Posts: 5
    edited August 2014

    My wife's oncologist may try another treatment approach involving a combination of Xeloda (capecitabine) oral drug and docetaxel (Taxotere) infused chemo drug.  Has anyone had any experience with this treatment plan?

    · Share on FacebookShare on Twitter
  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited August 2014

    Essexman - I haven't but I know quite a few here have.  You may want to ask on the bone mets thread as well as I think several of the folks there have had taxotere.

    · Share on FacebookShare on Twitter

Categories