Hormone therapy update

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  • henhill
    henhill Member Posts: 123
    edited December 2016 #2
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    Hormone Therapy Update

    I am almost through with the second phase of this therapy.  I will get a cat scan in January, but I can say that the tumor on my neck (in a lymph node) is half what it was and I am thinking tht maybe this will be a good "holding pattern" for now.  My MGH doc thinks it just might work.  Itt is Megace  4 per day for 21 days followed by tamoxifen 2 per day for 21 days..  This regimen was just out of clinical trials for UPSC

  • Nellasing
    Nellasing Member Posts: 528 Member
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    henhill

    That is good news indeed Laughing  Keeping the good thoughts and prayers coming (((HUGS)))

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
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    henhill said:

    Hormone Therapy Update

    I am almost through with the second phase of this therapy.  I will get a cat scan in January, but I can say that the tumor on my neck (in a lymph node) is half what it was and I am thinking tht maybe this will be a good "holding pattern" for now.  My MGH doc thinks it just might work.  Itt is Megace  4 per day for 21 days followed by tamoxifen 2 per day for 21 days..  This regimen was just out of clinical trials for UPSC

    I sure hope this works for

    I sure hope this works for you - it's certainly showing promise!!  Please keep us updated.  I'm always interested in UPSC treatments.

    Love,

    Eldri

  • MAbound
    MAbound Member Posts: 1,168 Member
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    Glad to hear this

    I'm going to be starting on Magace 4/day at the end of January, so I'm glad that you shared this and it seems to be helping you. Any side effects? I'm technically NED as of the PET/CT I last had after finishing chemo. I'm done with radiaition and recovering from that at the moment. Next appt. is in March and just lab work and a chest x-ray for that follow-up as well as to see how I'm doing on the Megace. Nothing said about adding Tamoxifin to my treatment. Are you part of a clinical trial for this? I can't remember if you said or not earlier. Thanks!

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    henhill said:

    Hormone Therapy Update

    I am almost through with the second phase of this therapy.  I will get a cat scan in January, but I can say that the tumor on my neck (in a lymph node) is half what it was and I am thinking tht maybe this will be a good "holding pattern" for now.  My MGH doc thinks it just might work.  Itt is Megace  4 per day for 21 days followed by tamoxifen 2 per day for 21 days..  This regimen was just out of clinical trials for UPSC

    Good news

    this certainly sounds like you are on the right track.  I am so glad that this might be working for you.  One more ray of hope for all of us.

    Hugs and prayers, Lou Ann

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    Such promising news Henhill.

    Such promising news Henhill. Thanks for sharing with us. I hope 2017 brings you even better news!

    Love and Hugs,

    Cindi

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited December 2016 #8
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    Sounds like good news!

    Sounds like good news!  Hoping the scan shows even better results.

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    Thank you for sharing that

    Thank you for sharing that very hopeful news and congratulations! Please keep us updated on how it is working for you. It is so very helpful to get first-hand reports about new treatments. Thank you again!

  • henhill
    henhill Member Posts: 123
    edited December 2016 #10
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    Hormone treatment

    This treatment was recently out of clinical trials when I started.  MGH doc said that this is a great way to avoid the "bigger guns" for a while, and the study  literature said that some women were on it for up to two years.  I'll dig it out after I clean up from the holidays!  When my onc wanted to put me on the taxol regimine after the tumor grew, he nixed it in favor of staying on this.  Seems like it's doing ok though.  Certainly, another line of defense for some of us!.

    BTW:  Megace may have caused me some stomach pain.  I will know better when I go back on it this weekend.  I was also a bit dizzy, but had a terrible cold at the time, so I am going to see what happens now that I am well.  Tamoxifen was fine, although, weirdly, I am freezing about two hours after taking it Undecided

     

  • paris11
    paris11 Member Posts: 159
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    I am also on the tamoxifin

    I am also on the tamoxifin/megace regime.  It's been 20 months with no recurrence. 

  • henhill
    henhill Member Posts: 123
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    paris11 said:

    I am also on the tamoxifin

    I am also on the tamoxifin/megace regime.  It's been 20 months with no recurrence. 

    paris11

    How encouraging to hear that...I hope I will experience the same!

  • oldbeauty
    oldbeauty Member Posts: 368 Member
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    Five years in remission

    For my second recurrence, I had internal radiation and then placed on high-dose Provera (400 mg/day). Provera is a different formulation than Megace.  The non-radiated lesions eventually shrank to NED level with remission lasting 5 years.  The one side effect that resulted was suppression of the adrenal gland (bc the steroidal version of progesterone fools the pituitary gland into thinking it does not need to message the adrenal gland to produce cortisol). The adrenal went to sleep and likely will not wake up again; but they have a fix for that. Good luck to you.  Oldbeauty

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited December 2016 #14
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    oldbeauty said:

    Five years in remission

    For my second recurrence, I had internal radiation and then placed on high-dose Provera (400 mg/day). Provera is a different formulation than Megace.  The non-radiated lesions eventually shrank to NED level with remission lasting 5 years.  The one side effect that resulted was suppression of the adrenal gland (bc the steroidal version of progesterone fools the pituitary gland into thinking it does not need to message the adrenal gland to produce cortisol). The adrenal went to sleep and likely will not wake up again; but they have a fix for that. Good luck to you.  Oldbeauty

    Hi!

    Hi Beth, I still have the email that you sent me earlier about your experience with Provera. As expected, in this country they prescribe Megace (megestrol) instead, so it will be interesting to see how that goes for me. I think I will be looking into how Provera compares and contrasts with Megace, now that I know for sure what my therapy is. From what I've been reading about its drug interactions, it sounds like Megace could cause some problems with managing my blood sugars and with taking some antibotics and other drugs should I ever need them. I'm also going to have to avoid some supplements/foods like quercetin, capsaicin, and grapefruit while taking this. I'm really hoping it's effect on my appetite won't be anything like the steroid for chemo had! 

    Is the endocrinologist part of your cancer team or did you seek him out on your own for other reasons. I'm curious if I should go for a consult with one myself because of this. The more I read about Megestrol, the more questions I have that I'm not sure my gyn oncolgist will necessarily be able to answer as well. I have a lot of respect for how powerful hormones are!

  • oldbeauty
    oldbeauty Member Posts: 368 Member
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    Endocrinologist

    My high dose Provera was started when I lived overseas.  Back here in the USA the gyn oncologist I selected wanted a baseline bc my treatment protocol was not practiced here.  I consulted an endocrinologist who was surprised by the result showing no cortisol production.  We had a candid consult. She acknowledged having no experience with Provera as a cancer treatment.  She said no one knows what the lowest therapeutic dose is but opined that since it had already done its worse she did not oppose continuing the dose so my gyn oncologist maintained it.  Now that I have a recurrence the gyn oncologist would not schedule me for chemo until I had a further consult about how to transition out of Provera.  She has me now on hydrocortisone.  I suspect your dose of Megace is small (bc my gyn oncologist was shocked at dosage of 400 mg). Still if you are concerned and have good insurance, I don't see why your doc would not agree with you getting a baseline measure of adrenal function.  Best of luck.  Oldbeauty

  • rcdeman
    rcdeman Member Posts: 263 Member
    edited January 2017 #16
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    I am praying that this Megace

    I am praying that this Megace/Tamoxifen regimen works for you Henhill! The more kinds of treatments that work, the better and more hopeful I become! Hoping for more great news from you in the near future!

    Love,
    Rebecca

  • henhill
    henhill Member Posts: 123
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    Update

    I just got back from my first official checkup since the Tamoxifen/Megace treatment I've been trying.  My CAT scan showed "significant reduction in adenocarcinoma in the pelvis and no growth in aortic lymph nodes".  Right now, it seems to be working, and I am going to stay on the regimen for at least another month.  I will be stopping the Megace however, since that was causing extreme shortness of breath and some hives.  So, I would say I am pretty happy about this and hoping it can continue to reduce the tumors.  

  • Nellasing
    Nellasing Member Posts: 528 Member
    edited January 2017 #18
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    hey Henhill,

    that is a WIN today!!!  I'll take it :D  So glad that showed a significant reduction in one area and no growth in the other area!!  YAY!  Keep us posted (((HUGS)))

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Good news, Henhill.

    "Significant reduction"!  That's great.

  • ConnieSW
    ConnieSW Member Posts: 1,680 Member
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    Terrific

    I'm glad for you

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited January 2017 #21
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    Henhill, That is great news!

    Henhill, That is great news! Thanks so much for sharing. Please keep us updated as you move forward.

    Love and Hugs,

    Cindi