Anyone using Fulvestrant or another SERD?

Mercorby
Mercorby Member Posts: 108 Member
edited May 9 in Uterine/Endometrial Cancer #1

Looks like I may be changing from anastrozole (an aromatase inhibitor) and Ibrance to fulvestrant or imulestrant and staying on Ibrance. I'm in remission after two recurrences, and it looks like I can stay on the lower dose of Ibrance, but all my research points to changing the ai to a serd.

I would like to hear the strategies you might be using to avoid or at least reducing the pain from the fulvestrant injection. It is given in tush muscles every three weeks. I have read and heard that it can be quite painful.

My doctor may start a clinical trial of imulestrant in a few months - which is a pill. I know that some people are already on clinical trials for that. I'd like to hear what your experiences are with that drug.

Thanks.

Comments

  • Forherself
    Forherself Member Posts: 1,012 Member
    #2

    You have certainly become educated about these medications. I admit I can't comment on their use, but I can advise about painful injections. I used to advise patients to take Ibuprofen and Tylenol before coming in for injections. You can also ask them to use a local anesthetic. Dentists do this now and it makes the injection much more doable. There is also a spray they can use to lessen the pain. The squeaky wheel gets the oil. I am sure glad to hear you are in remission. I wish you all the best.

  • Mercorby
    Mercorby Member Posts: 108 Member
    #3

    Thank you for your helpful suggestions. Do you think that using the lidocaine cream that I used to use for my port would work? (Sorry for the repeated verbs.)

    I finally went to a breast cancer hemotologist who also works with some endometrial patients. I brought a graphic organizer from a December 2023 research article in the International Journal of Gynecological Cancer. Since this article was published, there are several more drugs that are available in breast cancer for this pathway, but not in ec. But this graphic really allowed us to focus our discussion and she came up with solid suggestions. All of them involved changing anastrozole to fulvestrant. The other SERD are in pill form and may not be recommended to be used in combination with the cdk 4/6 inhibitors or Everlimous.

    ijgc-2023-December-33-12-1943-F1.large (4) copy.png

    Honestly, the amount of research we have to do in understanding our own endometrial cancers is insane. If I didn't keep on top of the research in breast cancer, I'd never be able to tell my doctors what's going on there. The tops and bottoms don't connect with each other.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,481 Member
    #4

    I agree with Herself, great research and I don't know if anyone else is on the same regiment you are, but you are providing all that come here with an education forever.

    It does stink that we are left to do our own research, and good for you to find a breast oncologist willling/wanting to talk with you. Keep us posted!

  • Forherself
    Forherself Member Posts: 1,012 Member
    #5
    https://csn.cancer.org/discussion/comment/1714956#Comment_1714956

    I suspect that the pain from the injection is in deep tissue so I would certainly ask your team about lidocaine gel, but also ask about the local anesthetic. I was thinking nurses may not be allowed to inject local anesthetic, but a nurse practitioner would. And it would numb the area. Your graphic is great. I would have to spend an hour understanding it. I think the good news about that is treatment is improving so quickly.

  • gbos1
    gbos1 Member Posts: 2 Member
    #6

    I also was on Anastrozole but was changed to Ibrance plus Fulvestrant…The Fulvestrant is given every 2 weeks for the first month then once a month; 2 shots, 1 in each hip…I am now on round 4 = no problems…My experience is that it all depends on who is giving the shots whether or not there is discomfort…The shots are given in the hip, not the glutes and are more on the side just above the hip joint…The first 30 seconds sometimes stings but then nothing…Again it all depends on who is giving the shot…My nurses have told me to keep the hips moving to get the meds moving because they are gel-like…I come home from appointments and I do ballet kicks , forward, backward, to the side, 10 times each way…I do this 4-5 times a week and have had no problems at all with pain…I take no pain relievers or ointment…I was afraid but it turned out to be a false alarm…Good luck whatever you decide!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,481 Member
    #7

    Thank you, gbos1. This is good to know.

  • Mercorby
    Mercorby Member Posts: 108 Member
    #8
    https://csn.cancer.org/discussion/comment/1714991#Comment_1714991

    Oh, thank you for your helpful advice. The metastatic breast cancer ladies often complained about Fulvestrant and scared me a bit. Where are you being treated? Very few of us ec patients are on Ibrance.

  • gbos1
    gbos1 Member Posts: 2 Member
    #9

    I am being treated at the University of Michigan Rogel Cancer Center, Ann Arbor, Michigan…

  • Mercorby
    Mercorby Member Posts: 108 Member
    #10

    Update: So, I am staying on anastrozole and Ibrance 75 mg. My doctor said that since my last PET/CT scan was good, we will stay the course until there is another recurrence and do scans every 3 months (for how long, I'm not sure). He's pretty confident that this treatment will hold up for a long time (how long is a long time?) My recurrences are treated with the Whack-a mole approach (my term, not medical term) with radiation. I thought for sure that he'd switch out the anastrozole for fulvestrant, and was quite surprised yesterday. The neutrophils were .62 after a week off Ibrance. So he's having me take another week off. That means anastrozole will have to hold the estrogen off. by itself during that time. I have seen a breast cancer doctor for a second opinion and she would have taken me off of both medications. But in bc, they don't really do the whack-a-mole approach with radiation.

    Meanwhile, I am exercising and working with an onc nutrition doctor, and taking Metformin. I'm hoping that will cut the fat, and help the poor little anastrozole hold back the estrogen. Feeling really good and strong. So there's that.

  • Forherself
    Forherself Member Posts: 1,012 Member
    #11

    I'm glad to hear the scan was good. I have been taking Ozempic for diabetes. It is covered by Medicare if you have diabetes. I lost 20 lbs on my own, but stuck there. I lost another 20 lbs on Ozempic. We know high blood sugar feeds cancer, so you might look into a form of Semaglutide. And I don't know if you are aware, soy products contain estrogen or a compound that acts like estrogen so I avoid those foods. Fat also produces estrogen so it is good to lose the extra fat. Semaglutide should be coming off the patent soon so hopefully everyone who needs it will have access to it.

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