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Good news with lung mets from Megace treatment (and complementaries)--closer to official NED

soromer
Posts: 130
Joined: Mar 2011

I have good news to share.
I had my latest set of CT scans on Monday--chest, abdomen, pelvis.
There is nothing new showing in my abdomen or pelvis, so that's great--the second scan in a row with nothing suspicious (my September scan did show enlarged lymph nodes, including the one in my pelvis that was only resectable during my surgery in February). The pelvic and rectal exam showed nothing developing either.
There is also nothing new -- other than what appears to be some tiny spots related to my recent severe upper respiratory infection -- in my lungs. And, best news of all, the remaining two lung nodules are now almost too small to detect. One is "resolved," according to the radiologist, since it is now only 2mm, down from 5 or 6mm, and the other is unchanged at about 3mm. I had to look this up: 2mm is about the thickness of a U.S. quarter. That's pretty darn small.
My gyn-onc is very pleased. While she can't predict what will come, obviously, having things continue to go in the right direction is exactly what we were hoping to see.
It's now 6 months since I started on the Megace, and almost as long that I have been doing Ayurveda and acupuncture, along with qigong, yoga, Reiki on occasion and meditation/visualization. And a mostly vegan diet, with some supplements familiar to most of us (Vit D, Vit K).
So it's more of the same for me, with even more enthusiasm and confidence in my treatment regime. I am extremely grateful to have such a good network of medical caregivers, since the synergy among the treatments seems to be working so well.

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

This is wonderful news, Kate! I am so happy for you. I am heading down a similar path having started tamoxifen about five weeks ago for a liver lesion, multiple lung nodules, plus an array of lymph nodes. Your results are quite encouraging and are a good motivator to more strongly address complementary therapies. I have been wondering how things were fairing for you - thankb you for sharing. May these results continue!
Annie

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daisy366
Posts: 1493
Joined: Mar 2009

Kate and Annie, I tagging along for this ride. I started the letrozole (Femara) almost 3 weeks ago. And continue my walking most days, yoga, Tong Ren, healing touch and mostly vegan diet. I feel very good - stronger, more stamina - and thoroughly enjoying life. I am working on FAITH - boy that's a big one!!!

Annie, I was wondering what your final decision was after all your research. You made a thoughtful decision and I trust that it will stabilize everything. I am leaning more toward the "less is more" philosophy is treatment and in more areas of my life. I'm working on decluttering and simplifying everything.

Hugs to all. Mary Ann

soromer
Posts: 130
Joined: Mar 2011

I should write a longer post about the astonishing experience I had the night before my CT scan. But the short description is that when I was preparing for bed late that evening, very mindful of my early morning CT, suddenly I felt suffused by a feeling of calm euphoria. (Odd phrase, but it seems to fit.) I "knew" that I would be OK, and that even if the results weren't what I had hoped, I would still be OK.

Earlier that evening, I had been in communication with another online friend who wished me results that would be "even better than I could have hoped." That seemed to be a wonderful gift, too, and I have taken it to heart.

I hope that your remedies generate a powerful synergy for you, Mary Ann, that leads to a recovery that's even better than you can imagine.

Peace and blessings,
Kate

soromer
Posts: 130
Joined: Mar 2011

At first, when my oncologist mentioned it last September, I was devastated and appalled. From what I'd read to that point, it was a treatment for women whose cancer was considered untreatable any other way, and it felt more like palliation than anything aggressive. And I was so not ready to think about imminent death.

Now, I do understand better, but I can't exactly say it's because my gyn-onc was forthcoming--though she did say that it does work very well for some women, and that she had many women in her own practice who had been on Megace alone for years and years. I also just kept reading, and trying also to read between the lines.

And lately, I appreciate that more hormones (estrogen inhibitors of various sorts, especially) are being used productively, not just for lack of anything better to do.

I so hope that you also get excellent results, Annie! It is indeed possible to reverse this state, even with disseminated tumors. My best wishes to you, and thank you for yours to me!

RoseyR
Posts: 464
Joined: Feb 2011

Am so glad to hear of this great news.

I wonder which aspects of Ayurvedic medicine you've found most valuable.

Love,
Rosey

soromer
Posts: 130
Joined: Mar 2011

Thanks for the excellent and challenging question, too.

A lot of the Ayurvedic healing happens off-stage, in a sense, because I'm not really aware of what each component contributes. I take herbal supplements and capsules, without knowing what's in them; I drink a specially-formulated tea; I oil myself with a particular blend of essential oils, the exact formula being unknown to me; I follow the dietary recommendations my Ayurvedist makes. Who knows, really? And I have no way of telling if the hormones themselves are doing most or all of the heavy lifting, to be honest. Wish there were multiples of me sometimes to sort all this out!

I think all the *physical* remedies are significant, but I also think the *metaphysical* ones are, too. From the get-go last fall, my Ayurvedist has encouraged me to believe in the capacity of my body to recover. That seems pretty important. And, she has also done a great deal of energy work during our appointments--sometimes acupressure, sometimes oiling, sometimes massage, sometimes breathing instruction--to facilitate my internal energy flow.

She'd probably say, come to think of it, that the breathing is the most important thing. It's essential to stay fully in my body, to take in and release air in a mindful and purposeful way. In fact, very early in my treatment, she did some sort of manipulation of my head and neck that suddenly released a block somewhere in my torso and permitted me to breathe more fully--into the apices of my lungs--than I could remember doing for years. And since then, my singing capacity has also improved dramatically, so something definitely changed.

I suspect I sound pretty far out to those who are more materialist/positivist in outlook. I do understand that perspective, and at times I am also very skeptical. And yet, I am better in multiple dimensions.

One last observation: In December, upon arriving at my gyn-onc's office for my consult and to hear the CT results, my BP was 186/90. (Yes, very high, but they accepted my explanation of anxiety over the results.) I'd been taking Ativan, which may have prevented it from going higher, I don't know! This time, however, my BP before hearing the results was 136/64, and I haven't taken any Ativan in months.

So far, so good. As I said before, I am grateful to have found a therapeutic combination that appears to work for me.

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

You certainly have found a perfect balance. I love reading your story and I'm glad your body is healing - your mind too.

I don't know if you read my comments about the Tong Ren healing session I had 2 weeks ago. the practitioner blew my mind when he said that Chester (my name for my upsc) has come to "teach me something wonderful.....and he will stay as long as I need him". This is heavy stuff. He also said I should let go of the fear - easier said than done.

I loved your image of euphoric calm and that things would be OK - that's FAITH in my book.

So happy for you. Any suggestions on how you got that way would help me right now.

Mary Ann

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

That's some interesting news you heard from the practitioner at Tong Ren. I'm not as heavily into what you're in, but do use my mind for calmness and positiveness to move forward and not drag all my negative energy on and on.

As you know I'm a big walker and like today, out while the weather was a bit overcast and cool (6am). During my walk I seem to gain energy from the surroundings and by the time I'm back home (50-60 min) whatever negative thoughts I started with are gone.....very therapeutic!

I've learned thru readings, visualize what you want the outcome to be. For instance, when I'm waiting in my oncologist office, I visualize my doc telling me my numbers are all good, with both of us smiling and laughing. If nothing else, it calms me.

Your thoughts control your life and you control your thoughts!...think about that for a moment.

Jan

soromer
Posts: 130
Joined: Mar 2011

Dear Mary Ann,

I did read your post about Tong Ren. There is much in that practice to learn from, I think. I'm glad that you have found it.

I'm not sure where the fear comes from, entirely. I haven't had cancer all my life, and yet fear (or its cousin, anxiety) has certainly been a powerful motivator for me as long as I can remember.

I've read two books by the same author recently that have been very helpful to me in learning how to cope with fear, to understand it without having it overwhelm me. The author is Sharon Salzberg, who is (apparently) a very well known teacher and practitioner of Buddhist meditation. If I recall correctly, she and Jack Korngold were among the founders of a major meditation center in Massachusetts, Insight Meditation.

The first book I read--which I must confess not to have finished yet--is called Lovingkindness. It is a beautiful exposition of the Buddhist concept of metta, or lovingkindness (compassion, forgiveness, etc.) with illustrations and applications in "ordinary" life. I became aware of the concept originally thanks to my meditation teacher here (who happens to have studied with Salzberg). One exercise my teacher explained to us started with extending forgiveness to someone who had injured me, and eventually offering forgiveness to myself. The latter is what I found hardest, somewhat to my surprise, and it was deeply disconcerting to me to realize how angry with myself I have chronically been. I think the cancer diagnosis only exacerbated that feeling. You may know what I mean, all the "if onlys" that you think about, wishing somehow to have avoided cancer in the first place....

Anyway, Lovingkindness is instructive in some important areas, and I do recommend it.

The other book of hers that I've read so far, Faith, affected me even more deeply. I need to read it carefully at least once more, because I really sped through it, drawn by the parallels I saw between her reaction to trauma in her life and mine. Now, we didn't have the same difficult issues to handle, but hers were very tough; she lost both her parents while she was still a young child. As a consequence, she withdrew into herself and feared trusting anyone or anything, let alone her own self. I don't have the same provocations but I sure did wind up with a similar result! So what she explains about regaining faith--ultimately, faith in herself and in her ability to cope with life in any circumstance--was very important to me.

Once I read it again, I'm sure I'd have something more intelligent to say about it. But I respond very strongly to what I read, even if I can't immediately articulate my reaction.

My dear friend, I haven't (yet) come to the position of being "grateful" for my cancer and what it has made me grapple with. But I am still grateful for every opportunity to learn and grow, and to make connections. Perhaps cancer has made that happen at warp speed now!

You are already doing so many good and healthful things for yourself, Mary Ann. I hope that you find my small suggestions useful to supplement what you already know. Even more, I wish you many, many healthy days ahead.

Peace and blessings,
Kate

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

Thank you so much, Kate and Jan. I will take advantage of what you have shared.

Jan, I must confess that I KNOW what you said, but I don't always DO it. I think both of you ladies are awesome!!

Hugs as we march on. I feel wonderful just talking to you both.

Mary Ann

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

Thank you Kate, Mary Ann, and Jan for this thought-provoking thread. I do feel there is a synergistic effect that comes with addressing all the terrains in our life rather than relying on just a medical treatment or procedure to solve all our ills. A you noted Kate, your improvements may be from just the Megace but it is more likely that it is the totality of what you are doing. A timely inspiration for me. There seems to be a selfishness in focusing solely on seeking my wellness but I keep reminding myself that I can't help others at all if I am no longer here!

Be well,
Annie

soromer
Posts: 130
Joined: Mar 2011

It's not selfish at all to focus on your own wellness. No one else is going to be able to do what you can do for yourself, and you deserve the best care you can possibly get.
Here's to doing our level best for ourselves, at every step of the way!

Peace and blessings to you, Annie.
Kate

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