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Officially NED! (after lung mets--"persistent" Stage IIIC2 endometrial cancer dx Jan 2011)

soromer
Posts: 130
Joined: Mar 2011

Yesterday I had my fifth CT scan. The second one, in September 2011, had the worst results: it showed several small lung nodules and several suspicious para-aortal lymph nodes. This was after six months of cisplatin and doxorubicin, and I was floored that the chemo hadn't worked. It was then that I started on Megace--and also on several complementary treatments, including Ayurveda, acupuncture, Reiki, yoga, qi gong, and meditation.

Each one of my quarterly CT scans since last September has shown dramatic improvement. But yesterday produced the best news of all: I now officially have NED! There are NO nodules in my lungs or anywhere else (at least, nothing larger than 1.25 mm, since that's the lowest resolution) and NO suspicious lymph nodes. I'm in remission, and I feel great! (Well, apart from chronic fatigue and night sweats. Not so bad in the scheme of things.)

I credit all of my treatments along with a healthy dose of luck.

It can be done, my sisters. I wish the same good results for each and every one of us.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

You have put in lots of dedication to your complimentary treatments.

What have your doctors said? And can you give example of your routine and what a typical day and week involves? i.e. frequency of acupuncture, reiki, etc.

Mary Ann

soromer
Posts: 130
Joined: Mar 2011

My oncologist said very little besides congratulations, and that she is delighted with my progress. The plan is to keep on going as I am, taking the Megace, with quarterly exams for at least the next year or so, and a CT scan in September but then (if no new problems) not again until March 2013.

She allowed as how it would be OK for me to get more aerobic exercise and to see about losing some weight. I've gained about 10 pounds since surgery, probably due to the Megace increasing my appetite.

Here's my regular routine:

Morning and night I take 80 mg. of Megace and 1 baby aspirin (81 mg.) to prevent blood clots.

Mornings I take these supplements: 20,000 IU of Vit D3; 1 multivitamin without iron; 100 mcg. Vit K; 2000 IU Methyl B-12. Every other day I add 400 IU Vit E.

At bedtime I oil my chest, belly, back and feet with a base oil and then drops of sandalwood on top (Ayurvedic remedy).

I am supposed to brew an Ayurvedic tea overnight and then drink it (32 oz.) over the course of the day. I'm erratically compliant with that one.

My Ayurvedist stresses eating as fresh as possible (though she's not an advocate of raw food exclusively.) I'm mostly vegan, but I have fairly regular lapses into eating fish. Wild caught if at all possible. I also have occasional eggs and dairy products. I'm not eating any red meat, and chicken only rarely.

I have a weekly consultation for 60-90 minutes with my Ayurvedist. Sometimes we just talk, and sometimes she does an energy treatment.

I have a weekly appointment with my acupuncturist, whose treatment of me is pretty routine at this point (since we've vanquished the neuropathy). Those sessions last about 90 minutes.

I attend a restorative yoga class once/week for 75 minutes, a meditation session once/week for an hour, and qi gong classes twice/week for 75 minutes.

Daily (except Sundays) I go to use a "far infrared massage bed" for a 35-minute session.

I am supposed to do deep breathing exercises a couple of times daily but don't always.

During the school year, I sing with a chamber choir for two hours/week, and then I practice outside of those sessions (probably another 90 minutes total).

Especially in the bad weather, I try to get to a local botanical garden several times a week. They have a conservatory, and being amidst the plant life in the middle of winter is uplifting.

I haven't done any Reiki in several months.

I'd like to continue with this regimen as long as I can--money and outcomes permitting. None of the complementary treatments are covered by health insurance, and at this point we're paying $1500/month out-of-pocket for health ins. premiums. I estimate that my complementary care adds another $700/month, easy. It will help when I can go on Medicare in a year.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Fascinating. I'm going to print this out and try to duplicate as much as possible.

I get medicare July 1. What do you think will be covered by medicare??

Any more specifics are appreciated - like the tea recipe. Any particular type of acupuncture? That's lots of D3 - any concerns to OD on it? Apparently there are toxic levels. How did you come up with that dose - your doctor's recommendations I suppose.

This is definitely time consuming and your full-time job now. I commend your commitment and you deserve the positive results from this.

Mary Ann

soromer
Posts: 130
Joined: Mar 2011

I wish I knew (re Medicare coverage). I am not sure myself, though I don't think that any of my complementary therapies will be.

Tea--I don't know, and I am quite sure that my Ayurvedist would say it needs to be formulated for the individual. That's one of the positive aspects of this over allopathic medicine; it's customized to a fair extent.

I don't know about the acupuncture either, though I could look up where my acupuncturist trained. That might tell you something useful.

My osteopath recommended the high D levels because I wasn't staying up very high on the 10,000 IUs. At diagnosis, my D level was 12. After some months on 4-8-10,000 IU (ramping up gradually) it went up to 56, but then it slipped back down in the winter. She claims that the OD levels for D3 are much, much higher than this. Caveat emptor, of course.

I also forgot to mention my weekly cancer support group! At various points, that's been very important to me, too.

It's always good to have your own doctor to review all of this with you. You're a unique individual, and unfortunately we all have to make our own way forward. If only there were one cure-all for everyone!

I hope you have encouraging results, Mary Ann. Keep on breathing and visualizing Chester to back off and leave you in health.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Soooooo thrilled for you. Keep up your dedication.
May NED give way yo a full CURE!
Chaya Sara

HellieC's picture
HellieC
Posts: 456
Joined: Nov 2010

I am so pleased for you - this is such wonderful news. You must have been so disappointed when the chemo didn't work, but my onco reckons that she has had good results with hormone treatments - and you are proof of that. I am just about to start on Femara (an aromatase inhibitor which suppresses oestrogen). I hope I get as good results as you have done.
Kindest wishes
Helen

soromer
Posts: 130
Joined: Mar 2011

Yes, it was devastating when the chemo failed. I had every expectation that it would work; it didn't even occur to me that it wouldn't.
My gyn-onc has also told me that many of her patients do very well on hormones for many years. No reason to expect I won't be in that group.
I hope that your results are just as good, Helen.
Peace and blessings.

pakb56
Posts: 141
Joined: Jan 2012

Hellie, that is such great news and I am honored to be able to share in your success! Treatments luck, thoughts, prayers, and competent health care providers. It all matters! Thandk you for the wishes for the rest of us sisters as well.

Hugs to everyone!

Pat

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Kate, it so wonderful that you have reached NED status with the combination of Megace and complementary therapies. That is so encouraging! Your comp therapies do seem quite comprehensive but with such a great outcome, so worth it!
Thanks for sharing your success story and may it continue on and on and on :-)
Annie

Karenhopeful
Posts: 38
Joined: Jan 2012

So happy to hear that someone with uterine cancer in the lungs can reach NED!! Be happy, live long!!

soromer
Posts: 130
Joined: Mar 2011

It has been a scary time for sure.
Other women I've communicated with on other boards have also come back from very dire conditions; it is possible. Your name is a good one to have--I hope good news to come for you as well.

soromer
Posts: 130
Joined: Mar 2011

We have to enjoy the good stretches when they come, however long they last. So far, so good....

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