Questions about Faslodex and others....

Options
NicoleRod
NicoleRod Member Posts: 2,906
edited May 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hi, so I got 1 shot of Lupron on April 30th. (that was at MSK) I also the same day had started the Letrozol. I then changed to continue my treatment at Columbia (so happy great decision) so yesterday at my appointment she decided to give me Faslodex.(spelling)? ... I have not had any signs of side effects from the Lupron at all yet...they did mention it could take until after the 2nd shot which would be in a few weeks.

I wanted to ask you all about the Faslodex...I heard it can cause diarrhea....how soon after the first shots does this generally take to experience? Is it uncontrollable diarrhea like you can be out somewhere and have an accident? Is it just like when you actually go to the bathroom it's diarrhea? I also heard it can cause low white blood cell count? Is there any other side effects from it?

I have not experienced any effects from the Letrozol either?? When do those generally kick in and what are they usually?

Any other advice you can give I would welcome.

Nicole


· Share on FacebookShare on Twitter

Comments

  • jobur
    jobur Member Posts: 726
    edited May 2019

    Hi Nicole,

    I was on Faslodex for nearly 4 years. I don't recall that it ever caused diarrhea or low white blood counts. The only side effects I noticed was low back pain and intense hot flashes. And of course the shots themselves can be painful and cause the muscle to be sore for a few days. It was really a great tx for me.

    I have no experience with letrozole, but most AIs can cause sore joints, bone loss, and hot flashes. 

    If you have not done so already, check out these links from the main site for more info.

    https://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors/femara

    https://www.breastcancer.org/treatment/hormonal/erds/faslodex

    And the Faslodex thread on this forum

    https://community.breastcancer.org/forum/8/topics/816419?page=99#idx_2957

    Be sure to read pajim's tips on how the injections should be given at the top of the thread.

    Wishing you all the best!


    · Share on FacebookShare on Twitter
  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited May 2019

    Ok my friend mentioned in a text about those symptoms maybe she meant from the Lupron or Ibrance and I thought she meant the Faslodex?

    In Pajims post it sounds like she injects herself?? I am going to be having it done by the nurse at my doctor visits (as far as I know) I know I have to go back in 2 weeks for blood and follow up and for the Lupron...then 2 weeks after that the faslodex (I THINK)....I cannot remember everything she said, next visit I will write it down.

    Thank you for the links.

    · Share on FacebookShare on Twitter
  • Nkb
    Nkb Member Posts: 1,436
    edited May 2019

    Nicole- the injections caused nausea for me for the day. I drank ginger tea, ate crystallized ginger and pushed fluids and that helped. I finally brought the ginger with me instead of waiting until I got home and that really helped. besides warming the injections and giving them very slowly, massage the area and do stair climbing or something that uses your glut muscles to help disperse it.

    · Share on FacebookShare on Twitter
  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited May 2019

    My injection was warm because I got an X-ray in between waiting for the blood work to come back and getting the injection. I hope its not cold next time.....Does it hurt if it's cold???

    Right after my injection my husband and I walked 5 miles in Manahattan so I definitely got the walking going. I have been having bouts of nausea after I eat...not all the time only sometimes but this was happening before the faslodex and a week before I started any meds. I mentioned that to the doctor at my visit we will re visit that when we do the 3 month scan. Right now she thinks I should try an antacid after eating...I may. Of course my mind is jumping to more serious things. I have not had any other symptoms yet but I am sure I will after the next injections.

    · Share on FacebookShare on Twitter
  • Tina2
    Tina2 Member Posts: 2,943
    edited May 2019

    NicoleRod,

    The syringes must be brought to room temperature. Otherwise the viscous fluid will be not only difficult to inject, but the process of injection will be painful. Please look at the suggestions at the beginning of the Faslodex thread. These are tips learned from our experience and well worth heeding.

    Tina


    · Share on FacebookShare on Twitter
  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited May 2019

    Tina thanks I did mention above that I read that thread. I only asked because it sounded like people are injecting themselves and I am not doing that my doctors office is doing it so I really can't take the syringes and do stuff with them. I am assuming they know that it must be room temperature because it was not cold when I was injected.

    · Share on FacebookShare on Twitter
  • pajim
    pajim Member Posts: 2,785
    edited May 2019

    Hi Nicole, no the nurses give the injections. Have to because they go int the butt.

    I told letrozole (Femara) and fulvestrant (Faslodex) for four years. Only side-effects were what they euphemistically call "menopausal symptoms". So hot flashes, dryness, that sort of thing.

    You might experience very stinky urine but that goes away in a couple of days. Some women have a little nausea though I never did.

    The fluid in the syringes is castor oil. As you can imagine, that's hard to inject. So it needs to be warm. Don't apologize for checking yourself and putting them under your armpits or waistband for a few minutes to warm them up. And the nurse needs to inject it sloooowwwwly. At least 30 seconds to empty the syringe. (Label says 2 minutes). Yes it's awful standing there that long with the needle in you but your butt will thank you later.

    The ladies here have probably trained most of the nurses in the country on how to give this stuff. I know I taught a whole bunch of nurses at my cancer center.

    · Share on FacebookShare on Twitter
  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited May 2019

    Thanks!!! I guess I got lucky...it definitely wasn't cold but it definitely didn't take 2 minutes or even a minute to inject...more like 30 seconds and it didn't hurt. For once maybe I got lucky! :)

    · Share on FacebookShare on Twitter

Categories