What am I missing?

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Spoonie77
Spoonie77 Member Posts: 925

I'm at a loss and I could really use some extra eyes and thoughts outside of the box possibly, if anyone has a few minutes.

....my back story: Tamoxifen [Any Early 40's Declining Tamoxifen?] and Zoladex [Allergic To Zoladex (Goserelin)]....

Basically with my being 42, pre-menopausal, having an intolerance to Tamoxifen (even at 5 mg daily), and my uber unicorn allergy to Zoladex (ovarian suppression needed for Arimidex/AI), I'm now waiting to see my MO to discuss what's next.

I will see her on Sept 3rd.

In the meantime, I've been trying to do some homework to find out my possible options now that Plan A and Plan B were a colossal no go.

I was looking into Lupron tonight, since it's a Zoladex alternative, and the ability to microdose since it's used in IVF. Microdosing is something my Allergist suggested going forward if I decided to try alternative medication to suppress my ovaries so I could be put on an AI. I'm fairly certain he didn't knew about what the alternatives "contrainications" were listed as. Gonna have to call him tomorrow and see what his thoughts are on these warnings.

Anyway, these are the warnings I'm seeing, "LUPRON INJECTION is contraindicated in patients known to be hypersensitive to GnRH, GnRH agonist analogs or any of the excipients in LUPRON INJECTION: Reports of anaphylactic reactions to GnRH agonist analogs have been reported in the medical literature."

^^^As far as I know, that's me. Diagnosed hypersensitive IV: delayed to Zoladex. Ugggh.

So, that seems to put Plan C (an alternative OS/AI route) as a no go, right?

I will need my Allergist to confirm or say that a Challenge Test could/would be appropriate I guess before I'd be brave enough to try it. Seems scary to see that and after what I've been through, I am NOT eager for a 2nd re-exposure which I've been told could/would likely be dramatically worse than the first one has and continues to be.

If I'm right, then does that leave me only surgery as an option? Hysterectomy and/or Oophorectomy?

Are there other hormonal therapy options I'm missing? Any other ovarian suppression meds besides GnRH antagonists like Lupron and Zoladex?

Like I said, any help or thoughts outside the box are very much appreciated.

Scary to think that I may be looking at either deciding surgery or no further treatment when my MO tells me that my risk for METs/Recurrence is 28-35% without adjuvant hormonal therapy on board.

Just gonna have to take this all one day at a time. Thanks in advance ya'll.

Hugs and healing,

Spoonie




Comments

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2019

    Hi!

    The most obvious alternative to ovulation suppression is an oophorectomy. Many ladies here have had this surgery, and from what I understand, it can be performed laparoscopically. There are also several threads about this surgery and the recovery thereof.

    Good luck!

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2019

    This is quite a coincidence! I just replied to a new member who was asking about a drug used for ovarian suppression called Trelstar. I’d never heard of it but did a quick google search. It is used to treat advanced prostate cancer but appears to have been used for bc as well. Not sure why it is not commonly used now but looking into it might turn up something positive. Take care

  • marijen
    marijen Member Posts: 3,731
    edited August 2019

    Oh sorry, disregard : )


  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2019

    Right Elaine, thanks for posting. I appreciate you taking the time. My problem is since I've had such dramatic and horrible responses/SEs to reducing my estrogen levels, ending up with zero QOL, I am highly opposed to surgery as I fear I'll end up that way for the rest of my life or many, many years with no fix. That's why I'm searching for other meds to try or things outside of the box, etc.


  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2019

    Thanks for the tip, Exbrnxgrl. I appreciate it. I hadn't heard of this drug yet, so hey, that's a start, right? :)

    I did some quick googling on Trelstar and sadly this is also a GnRH antagonist which is contraindicated in my case.

    I will definitely run it by my Allergist though when I ask him about the Lupron as well. Maybe this might be a safer option in his eyes than Lupron. Never know.

    Thanks again.

    image



    https://www.pdr.net/drug-summary/Trelstar-triptorelin-pamoate-648

  • marijen
    marijen Member Posts: 3,731
    edited August 2019

    Spoonie, what about bioidentical progesterone in pill form? It's supposed to suppress ovulatuion and has many many other benefits. Macb04 knows a lot about it. Here's the link:
    https://community.breastcancer.org/forum/6/topics/...


  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2019

    That's a good idea, Marijen. Thank you. I will add that to the list of medications to talk to my MO and Allergist about at my next appts.

    I sent a msg through the portal today to my Allergist, asking about whether I could even attempt a Drug Challenge Test with any of the other ovarian suppression meds mentioned (Trelstar and Lupron) since they say they are contraindicated in my situation.

    He messaged back that we can do that in his office with any med my MO and I choose, if I would like to, due to importance of being on these medications. I'm glad he is willing to help me with this but I am also scared that I will have severe reactions to any of these GnRH meds. I guess the only way to find out is to try. Scheduled the soonest appt for 9/10.

    At least this way, any alternative med will be in a minute doses and their half lives will be shorter than the monthly injection.

    Although, the caveat for that situation being that I got my one and only 1 MONTH injection on July 2nd and I am STILL reacting to it and dealing with swollen glands, rashes, and a neck the size of The Hulk when I am not on Prednisone. Uggggh.

    Wonder how long my system would react to a 1:1000 of the dose?

    I've been reacting for over 60 days. 60 days ÷ 1000 = .06, which is about 1.5 hours.

    LOL. I guess I could deal with that.

    Stay tuned. The Spoonie mystery continues....

  • ErenTo
    ErenTo Member Posts: 343
    edited August 2019

    Sorry if it was already mentioned, but have you looked into other SERMs? Evista or Fareston I think.

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited August 2019

    Thanks ErenTo. I appreciate the post. Those meds are for post-meno women I believe. I'm pre-meno and need to be on ovarian suppression in order for those meds to be effective. That's why Im trying to think outside the box and also work with my Allergist to get Lupron or maybe Trelstar to work despite my allergy.

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited September 2019

    Just wanted to update this thread. I'vs spoken with my MO, my only other option available for Ovarian Suppression is Lupron. The others mentioned earlier in the post aren't a go. I have an appt scheduled with my Allergist to discuss possibly doing an oral challenge with Lupron. I really don't know if I will.

    The past 5 months of tinkering with my hormones have given me 0 QOL. Not sure if mentally I can do any more tinkering.

    I have decided for now, that I will not be opting for any further surgeries. Right now my plate is just too full and stressful. I was recently with diagnosed with MS this month, am still waiting to find out whether or not my thyroid nodule is cancerous (Oct hurry up), waiting to find out the results of my first post-surgical Breast MRI next week, waiting to find out the reasoning behind another abnormal PAP (fingers crossed it's just pre-cancerous as it's been 2 x in the past), and then beginning treatment for my MS.

    It's overwhelming to say the least. I truly need some good news, may some head my way with the results that are in-bound over the next few weeks. **crosses fingers**

  • edj3
    edj3 Member Posts: 2,076
    edited September 2019

    *sends wishes for good news and happier, calmer times to Spoonie*

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 609
    edited September 2019
    Spoonie, It all depends on how "out of the box" you want the tips to be, but this could help

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC45965...

    Good luck!❤

  • marijen
    marijen Member Posts: 3,731
    edited September 2019

    Yndorian, that study is way too complicated for me but there is a supplement at Amazon called Estrohalt which is a combination of DIM and IC3. There is also Berberine which is like Metformin for BC.


  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 609
    edited September 2019

    Marijen, As far as I understood, sulforaphane and ic3 have been recommended because they are estrogen blockers and according to this study they also inhibit other pathways that breast cancer uses to grow up (something like a kind of vegetable tamoxifen) Of course I am not recommending taking it instead of tamoxifen, but Spoonie asked about alternatives... it can't hurt, right? I also read about berberine and metformin ....

  • marijen
    marijen Member Posts: 3,731
    edited September 2019

    Yes I understand Yndorian, this thread is to help Spoonie. There is also Ginger and Tumeric. Spoonie you can do a search here for the alternative treatments threads.


  • marijen
    marijen Member Posts: 3,731
    edited September 2019

    Spoonie, do you know about RightMed Gene testing?


    https://oneome.com/


  • Spoonie77
    Spoonie77 Member Posts: 925
    edited September 2019

    Thanks everyone for the tips and links. Surely do appreciate the info and the encouragement.

    The past 5 months has been nothing short of an ongoing stressful nightmare. I'm eager to have my life calm back down. Only 2 more weeks until most of my specialist appts and scans are complete. Can't wait to breathe a sigh of relief after the last is finished.

    As I posted on the Starting/Declining Hormone Therapy thread, I met with my new MO today. The main take away for me is that ee discussed the fact that I now have to contend with MS and that there is demonstrable proof and studies showing that lack of estrogen can/does trigger attacks in patients with that disease. Perhaps this explains why I did so terribly on 5 mg of Tamoxifen and could not tolerate ovarian suppression, besides being allergic to those in the first place I suppose. With that being said, she believes that it's best to focus on fighting the MS, to not exacerbate it as it's a lifelong incurable disease whereas my BC may or may not ever come back.

    I guess I must choose to fight the battle that is at my door rather than one that may never arrive....

    So the plan is now, no plan so as to not make things worse and to preserve my QOL.

    It's scary but also at the same time a relief. Not sure if that makes sense, but it's how I feel, at least for now. Lol, ask me in 2 weeks since we all know how that can change from day to day. ;)

    It should feel scary, being "set free" so to speak, without any Systemic Therapy on board and no surgery alternatives either, but again I'm a bit relieved to not have someone TELL me I need this or that, but to instead focus on the big picture I'm currently struggling/ living in. I was surprised to hear her voice her thoughts against these surgical options but it's logical in lieu of the MS and how poorly my system reacted to the tiniest decrease in estrogen. Surprised but relieved. For now MS is where I need to invest my time and spoons so I will take things one day at a time in the NO endocrine treatment category and see where the months and years take me.

    Lastly, we talked about my 28-35% RR/METs and she brought up a few things that, besides the MS dx should also be my new focus ---> weight loss and exercising.

    My MO said that without Endocrine therapy my best options to keeping my risks down are reducing the adipose tissue (aka FAT), which produces estrogen. Doing so will reduce risk of breast cancer. I knew this of course, but have not at all been trying to lose any weight. I've been in "just keep swimming" mode for the past year. Am determined to make this my new focus. She said even losing 5 pounds would drop my estrogen levels a decent amount. Ok self, we can do this, 5 pounds at a time.


    "After a median follow-up of 11.4 years, women with a 5% or greater weight loss (n = 8,175) had a 12% lower breast cancer incidence, which was significant. This finding remained the same after adjusting for mammography frequency. Women who had a 5% or more weight gain did not have a higher overall incidence of breast cancer, but they did have a significantly higher incidence of triple-negative breast cancer (hazard ratio = 1.54, 95% confidence interval = 1.16–2.05)."


    And then there's exercise, which I didn't know, can reduce RR. Learn something new every day. I mean, I knew in general it was good for us, obviously, but didn't know it impacts how our bodies use and communicate with hormones. A good article by Dr. Susan Love, might make you laugh when she talks about cute little mice on treadmills, but the short and long term studies they've done on how exercise changes hormone pathways is really encouraging. :)

    Again thanks ladies for the suggestions about DIM and IC3. I'm familiar with these and had been taking them when I was still on Tamoxifen. After my allergic reaction to Zoladex I stopped them along with some other supplements to try and reset my system. Anyway, there was so much to go over at my first appt with this MO today that I didn't get to discuss these with her but I plan to when I see her again in 3 months.

    Hopefully by then my body will have calmed down a bit, I'll know where I stand on the possibly cancer/nodule on my Thyroid, and much more. Anyway so for the long post but I did want to come back and post here as to what the plan turned out to be. Thanks again everyone for reading and for following along. Your help and support is so very appreciated.

    Peace and healing to all....

    ---------------

    PRO TIP RE: BREAST MRI -->

    "Schedule your MRI for the beginning of your menstrual cycle. If you're premenopausal, the MRI facility may prefer to schedule your MRI at a certain time during your menstrual cycle, around day three to 14. The first day of your menstrual bleeding is day one of your cycle. Let the facility know where you are in your cycle so that optimal timing for the breast MRI can be scheduled."

    Apparently if this is not timed correctly, the higher level of hormones circulating in the body can dramatically affect how the contrast is absorbed, how it's seen on imaging, and result in a less sensitive, less accurate MRI. I SOOO wish a doctor would've told me this, so just wanted to pass this on to anyone that comes looking.

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 609
    edited September 2019

    Spoonie: thanks for the update here. I'm sorry that there are still 2 stressful weeks. You have a good plan with exercises and weight loss. Good luck!

  • florence123
    florence123 Member Posts: 9
    edited January 2020

    Spoonie,

    Have you considered taking your ovaries out? This is what my oncologist suggested and I did it. The surgery is not painful with limited down time. I was 45 when diagnosed and had horrible side effects with Tamox. Now I am on aromasin. It has been more than 4 years.

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited January 2020

    Thanks for the thoughts Florence. Unfortunately due to my Multiple Sclerosis my MO and Neurologist advised against anything permanent since lack of hormones has been shown to speed disease progression in some women.

    Also their thoughts were that since I could not tolerate tamoxifen in the in the least at the lowest dose possible I would likely struggle to stay on any postmenopausal medications as well given all of my medical conditions. A second opinion also confirmed that as well.

    In addition since I'm not able to be in meds now due to my severe Ovarian Suppression Med allergy and cannot have surgeries I am doing what I can with diet and exercise. Studies show a decrease in RRs with less body fat...since fat makes estrogen.


    Doing what I can...one day at a time. Wish you the best on your own journey. :)

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