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Hormone therapy update

henhill's picture
henhill
Posts: 123
Joined: Aug 2016
henhill's picture
henhill
Posts: 123
Joined: Aug 2016

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

EZLiving66's picture
EZLiving66
Posts: 1425
Joined: Oct 2015

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

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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

Nellasing
Posts: 529
Joined: Oct 2016

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

MAbound
Posts: 1063
Joined: Jun 2016

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!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1673
Joined: Jun 2015

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

Love and Hugs,

Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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's picture
henhill
Posts: 123
Joined: Aug 2016

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
Posts: 160
Joined: Oct 2010

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

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

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

oldbeauty
Posts: 251
Joined: May 2012

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
Posts: 1063
Joined: Jun 2016

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
Posts: 251
Joined: May 2012

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
Posts: 257
Joined: Aug 2016

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's picture
henhill
Posts: 123
Joined: Aug 2016

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
Posts: 529
Joined: Oct 2016

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's picture
Editgrl
Posts: 903
Joined: Jun 2015

"Significant reduction"!  That's great.

ConnieSW's picture
ConnieSW
Posts: 1494
Joined: Jun 2012

I'm glad for you

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1673
Joined: Jun 2015

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

Love and Hugs,

Cindi

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

That is really good news, Hehill. Stay hopeful and best wishes that those tumors continue to shrink! Kim

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

Sorry for the double post.  I cant seem to delete the posts that show up twice, the option isnt there.

 

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