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Topic: Tymlos VS Reclast

Forum: Bone Health and Bone Loss —

Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Apr 21, 2021 10:19AM - edited Apr 21, 2021 12:21PM by Katie00

Katie00 wrote:

Hi,

Has anybody tried Tymlos? I took Prolia for two years but it barely kept my T-scores steady. Then my endo put me on Reclast but one year after the first infusion my dexsa showed that my T-scores got worse. Now my endo wants to put me on daily injections of Tymlos. I'm terrified of the side effects. Is Tymlos safe to take for hormone positive BC? I read that it is a hormone. Thank you

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Apr 21, 2021 12:21PM edj3 wrote:

I am on Tymlos, my breast cancer was very highly estrogen positive. What questions do you have?

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 21, 2021 12:29PM - edited Apr 21, 2021 12:33PM by Katie00

Hi edj3,

Thank you for responding. My breast cancer was very highly estrogen positive as well. I'm about to start Tymlos and when I did some research on it I found out that it is a parathyroid hormone. What does that mean? does it have anything to do with estrogen hormone? How long have you been taking Tymlos? I hope it's. not giving you too many side effects

Thank you

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Apr 21, 2021 12:41PM moth wrote:

I think we get panicked by the word hormone because we think of some breast cancers as hormone driven & that's true but it's a very specific hormone. The word 'hormone' means a substance secreted in one part of the body which has an effect somewhere else in the body. We have tons of hormones in our bodies. Adrenalin is a hormone.

Parathyroid hormone is made by the parathyroid gland which is a small gland near the thyroid in your neck. It is generally in charge of maintaining calcium concentration in the blood.

Are you taking tamoxifen or an aromatase inhibitor?

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Apr 21, 2021 01:12PM Katie00 wrote:

Hi moth,

You're right about panicking every time the word hormone is mentioned. Thank you for the explanation of parathyroid hormone. I'm taking Anastrozole.


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Apr 21, 2021 01:36PM moth wrote:

Katie, definitely discuss your concern with you dr so you feel 100% confident this drug is right for you but I think the anastrazole is keeping estrogen very low in your body so that should be decreasing your risk of recurrence. I think it's good to stay on top of the meds we're prescribed and make sure they're not incompatible with something else or inappropriate. I hope you get your bone strengthened up :)

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Apr 21, 2021 01:40PM Katie00 wrote:

Thank you. I agree and I really appreciate the advice.

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Apr 21, 2021 03:22PM edj3 wrote:

So the risk with Tymlos isn't tied to estrogen.

You probably already know this, but the absolute longest you can take Tymlos is two years due to an increased risk of a specific type of bone cancer.

After you finish taking Tymlos (or Forteo, they are very similar), you must go on another osteoporosis drug because your body will not maintain the new bone growth. My endocrinologist has already discussed next steps and for me, it will almost certainly be Reclast.

Why take Tymlos? Well because it actually increases bone density. For me, the slight bone cancer risk is worth it as I've broken two bones while running (not falling, just training or racing: I fractured my pelvis in 2018, and then a bone in my foot nearly a year ago).

I am highly, highly motivated to take this drug exactly as prescribed (daily injections) for the full two years and I will stick with the Reclast afterwards. I inject Tymlos in my belly every evening; they are small needles very similar to what's used w/ insulin.

You can read more on the Tymlos site (tymlos.com). Happy to answer any other questions based on my experience!

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 21, 2021 03:37PM Katie00 wrote:

Hi edj3,

I'm so sorry to hear that you've broken two bones. That is my fear. That's why I'm willing to take OP medication too. The specific bone cancer side effect of Tymlos is scary though. Did you have a choice between Tymlos and Forteo? My doctor never mentioned Forteo.

Thank you

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Apr 21, 2021 05:03PM edj3 wrote:

My endocrinologist would have prescribed either one; he had a sample of Tymlos at his office, but not Forteo. So that's what I tried and tolerated. I'd had two Prolia injections and had an allergic reaction to the second shot, probably because the needle housing included latex and I have a known allergy to that. But it didn't matter, he said no more Prolia.

The two drugs are very similar. Forteo is a lab-made version of human parathyroid hormone (PTH) and Tymlos is a version of human parathyroid hormone-protein. They're both daily injections.

You can read more about both of them here.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 21, 2021 07:25PM Katie00 wrote:

Thank you so much for the link. Very informative. My endo mentioned that she has samples of Tymlos at her office too.

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