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Comprehensive Update--Good News!--Almost NED (only two small lung nodules to go)--through Megace and Complementary Therapies

soromer
Posts: 130
Joined: Mar 2011

I don’t post as often as I’d like here, mostly because I’ve been preoccupied with searching out (and implementing) treatment strategies. But I do lurk, and I wanted to share my recent good news with you.

I think the last time I posted anything was in relation to seeking a second opinion. I did that because I was frustrated with my original oncologist, who has the annoying habit of giving bad news to me over the phone—and also not being very forthcoming about the implications or considerations involved. (I decided not to go with second opinion guy, for reasons I’ll explain below.)

My first CT scan after I completed six full rounds of first-line chemo (doxorubicin and cisplatin) showed disease progression. In March, right after my surgery, I had very small, but suspicious lung nodule that my oncologist said was “not concerning.” Plus, I had at least one troublesome lymph node, the remnant attached to my left iliac artery that wasn’t fully resectable.

In September, hopeful that the chemo had accomplished what it was supposed to do, I discovered instead that I had 5 nodules in my lungs (though fortunately all 8 mm or smaller), and additional problematic lymph nodes. At that time, the radiation treatments that were supposed to happen next were taken off the table, and my oncologist suggested instead that I go on a hormone therapy, Megace (an artificial progesterone). She has had many patients who have experienced no disease progression for several years, with Megace as their only treatment, and since my tumor cells were strongly ER and PR +, she thought there was a good chance this would work well for me. In the best case, there would be some improvement, definitely no progression, but of course time would tell.

I was not only shocked and dismayed by the CT results, but also scared to hear about the Megace. What I read online about it was not at all encouraging; it was considered only a palliative treatment in most sources I read. However, when I talked with another gyn-oncologist at the other Comprehensive Cancer Center nearby, he had very little to offer me. My nodules weren’t big enough for me to qualify for Phase II clinical trials, he didn’t have much success with Megace in his own practice, and what was left would be more chemo (probably carbo-taxol).

I decided to stay with my original oncologist, who was a little more communicative in our October consult, and also to pursue every single complementary therapy that made sense to me. It became very, very clear that my survival was going to depend on my full commitment to seeking out therapies that worked for me.

So, since late September, I’ve been on a quest. I’ve adopted a vegan diet, more or less; I’ve undergone a raw food detox (an interesting but generally positive experience); I’ve started acupuncture and I’ve started Ayurveda. The acupuncture has been enormously helpful for my neuropathy (in my feet), and I think the general immune support is good, too. My acupuncturist is actually part of an integrative medicine clinic at another of the major cancer hospitals in the area, so she sees a lot of people with cancer (and also has experience dealing with oncologists!) The Ayurveda is simply wonderful, as far as I am concerned. I drink specially formulated teas, I have body/energy work done on me; I have emotional support for taking good care of myself. Oh, and I also had a couple of powerful Reiki sessions, and I started taking qi gong classes to learn more about immune system enhancement. This is in addition to my weekly yoga, T’ai Chi, and support group meetings. The fall has been very full, but very gratifying.

Going into my CT scan at the beginning of this month, I was very nervous. I've been feeling well and healthy, and doing SO MUCH stuff to get better. I really wanted my Cancer-O-Meter (to borrow ever the optimist’s image) to prove accurate. My BP was 180/84 when I went in to hear the news from the oncologist.

To our great relief and excitement, I have experienced dramatic improvement. Three of the five lung nodules are no longer visible at all, and the remaining two are half the size they were. And none of the previously enlarged lymph nodes, not even the remnant that was stuck to my left iliac artery, shows up at all. My abdominal and pelvic CT scan showed NED, in other words, and I’m almost there with my chest CT too. The oncologist was very gratified herself, surprised by the speed and comprehensiveness of my improvement, and guardedly encouraged overall.

Going forward, then, it’s more of the same. I'm still on the Megace, and I'm definitely still doing the other treatments with renewed confidence and commitment. It feels great to have gained ground already, and I want to reach full NED and have it confirmed in the spring. This is the first good news I've had all year, so we in my family are all much better than we have been for a while.

So much of cancer recovery remains a mystery. I do not claim to have full answers, even for myself. Yet I am buoyed by my success so far, and I hope that it can encourage others.
Keep the faith, sisters!

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

All good hopeful thoughts right back atcha..

Love and hugs,

Claudia

HellieC's picture
HellieC
Posts: 461
Joined: Nov 2010

I am so pleased for you. That is just such encouraging news - thank you for sharing it with us. It just shows that we have to be our own advocates and follow the path that feels right for us. It seems that your integrative therapies, diet and conventional medicine are all working together in harmony towards a great outcome - long may it be so.
I wish you continued good health.
Helen

soromer
Posts: 130
Joined: Mar 2011

I appreciate your good wishes very much.
May you both (and everyone else dealing with these intimidating conditions) find the care you need to be well.
soromer (Kate)

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

How wonderful. I commend you for your quest and finding treatments that work for you. I also believe that these alternative treatments have value and have practiced them myself. I used to be more vigilant but have got away from my daily regime. You are giving me a good virtual kick in the pants to get back to this!!!!

I wish you continued wellness and wonderful holidays,

Mary Ann

soromer
Posts: 130
Joined: Mar 2011

It's always gratifying to see how much we support each other here, and how much we learn from each other. I know I appreciate it.

I wish for you the same--on to a healthy and happy 2012!

Kate

evertheoptimist
Posts: 140
Joined: Jan 2011

this is so encouraging. thank you so much for sharing this with us. Does megace work as a maintenance strategy also?

soromer
Posts: 130
Joined: Mar 2011

Megace can be an effective treatment, apparently, as well as a maintenance drug. This is especially true for women with low-grade cancers that are ER and PR +, but it's also apparently effective for (a smaller percentage of) women whose tumors are negative.
The literature shows a minority of women have a strong response to it--often only in terms of slowed disease progression, but sometimes also in terms of a partial or complete response. I'm still hoping for the complete response.
I cannot prove it, of course, but I think my other treatment regimes are acting synergistically with the hormone. So far, so good, at any rate.
I hope you continue to get good results from your treatments. I'm sorry that the powers-that-be kicked you off the clinical trial.

snyderpm
Posts: 37
Joined: Dec 2009

I thought I would reply to you becasue I am also taking Megace. I had uterian cancer, low grade and stage, and had a daVinci to remove everything, and doctor's were fairly confident that I was cured. I had no chemo after, becasue everything they tested was negative. Well in less than 6 months it was back in my abdomen, everywhere. I then had a laparotomy and they removed my omentum and scraped all the cells out they could find. After, I had 4 rounds of Taxol/Carboplatin. One month after the chemo I started Megace. I am ER+ and PR+, and the chemo doctor told me that the Megace works much better if you are positive not only for Megace but also for chemo. My CA 125 is low, actually he said it is abnormally low, which is good, and my CT scans are negative. This guy had done loads of research and trials before he started practicing, and he told me a story about a woman who had these large whatevers in her chest. I don't know if he meant her breast or lungs or what, and I don't know what other treatment she had before the Megace. They put her on the Megace and she was cancer free for 15 years. After 15 years she asked to stop taking the Megace, because it makes you gain weight. Her cancer came back immediately, so they put her back on the Megace and the cancer went away.

I hope you and I respond to it the same way. I would love to get 15 years.

soromer
Posts: 130
Joined: Mar 2011

Thanks for checking in!

I'm really sorry that you have had such a rough go with the recurrence, and I hope that Megace works for you, too.

I love hearing the success stories from unusual treatments--especially now that I'm on one myself. My oncologist is not very forthcoming, but she's also said that some of her patients on Megace have been on it for a decade or more. I'm shooting to be here for my grandchildren's weddings, which is ambitious because I don't even have one grandchild yet.

I haven't had to deal with any weight gain, but that may be because I'm on a (mostly) vegan diet and taking other supplements as well. Occasionally I have some twinges of appetite, and frequently I have night sweats. If those are the only problems I have to deal with thanks to the Megace, and it is effective for me, I will consider myself extremely lucky.

Here's hoping that all of us have a more healthy year in 2012.

evertheoptimist
Posts: 140
Joined: Jan 2011

soromer,

I am doing well on this new treatment they put me on after I was booted off of the trial that I think was working very well. I feel fortunate that so far none of the drugs they ever used failed to produce good response. A good friend of mine who is an OB/GYN who follows up with all of her patients who she sends to oncologist told me that I am, what she calls, a responder. I hope I stay that way. I am realistic. As a UPSC 4B/OVCA 3c patient, my goal is to manage my cancer as a chronic disease with one successful treatment after another for each recurrence, with hopefully a meaningful break in between. To do that, I need to stay "respondent" to as many arsenals they can throw at me.

soromer
Posts: 130
Joined: Mar 2011

evertheoptimist,

Being a responder is, as you say, a good thing. I do hope that you continue to react well to each of the treatments, and that you reach your goal of coping with your cancers as chronic illnesses. You seem to have the flexibility and the commitment necessary to give this your best shot.

May 2012 bring you prolonged remission and prospects of even better years to come.

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

I am overjoyed at your wonderful results. Especially since you became your own best doctor! I pray you will dance at your grandchildren's weddings and see Great Grandchildren!

Sadly, and not to rain on your parade but to soften the blow to readers or lurkers who don't have such great results,I am writing as a fly in the ointment. After four taxol Carbo treatments I had two Doxil carbo. Then Meggace for maintenance. Was NED, but Within eight months after chemo ended, five months after CT, and on megace the whole time, felt pressure on my bowels, constipation, and got a CT. I had a tumor the size of a grapefruit. All my bloods and Ca 125 were dandy even the day before surgery!
It was end of Oct oh first thing Doc said is stop Meggace.

I had switched to a Organic Mediterranean, mostly no red meat and only some chicken and more fish diet a la Servan Schreiber AntiCancer book.
I also do half an hour on the treadmill six days a week. My Dx after first surgery was and is Stage IV Grade III Uterine Clear and Mixed cell adenocarcinoma.

In Oct. Had tumor out and colon resected. Now on Gemzar and Carbo but my white and platelet count quite low as well as red blood count, anemic. Seems like last year 's chemo compromised my system. The chemo protocol now is Gemzar Carbo, then eight days later Gemzar. Then two weeks later both again. Twice my system couldn't take it, extreme 'wet rag syndrome' ,me, for three weeks that I ended up having Gemzar carbo once every three weeks which I had last Thursday.. Now waiting for Thursday blood tests and next Monday's results of next Sunday's CT.
Am not 'up' self 'cause I can't get to work or out of the house as I need to rest pretty much all the time in between two hour activities.

Wishing us all years of NED, joy, good news and health,

Sara

JoAnnDK
Posts: 276
Joined: Jun 2011

So sorry you are enduring all of this, Sara. I think the last thing you need to be concerned about is being a "fly in the ointment" here. This is the reality of the evil called cancer. As our dear friend Linda said, it can be a crapshot, no matter what one does.

Keeping you in my thoughts, and please keep us posted.

JoAnn

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

Thanks to JoAnn and y'all for being out there.
Sara

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

Thanks to JoAnn and y'all for being out there.
Sara

evertheoptimist
Posts: 140
Joined: Jan 2011

sara,

thank YOU for sharing your story. Please do NOT censor yourself because your story is different from others. We need to hear as many stories as possible so that we can make a half way informed decisions. The more I learn about being a patient of a rare form of stage 4 cancer, the more I realize that so much of the treatment decisions are actually art, rather than science. I believe that ultimately the patient has to be the master artist – choosing just the right hue from a confusing array of options on the palette.

We need to hear from other more, not less. In forums like this, there is sometimes a tendency on the part of certain people (NOT anyone on this thread) to shut other people up for having an opinion that unsettles other people's views and bursts their bubble. When people's valid input expressed in a respectful manner is squelched for whatever reason, it lowers the quality of the discussion we have here.

So sorry that your recurrence happened in spite of everything. That was the case for me too. But we all need to solider on.

Thanks for sharing your experience, and good luck.

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

I loved hearing that!! and good point.

There really is a distinction between book- learning (science) and how and when to implement a particular technique (art). I think the patient needs to be a partner with a good doc. I think my doctor is a real "artist" for which I am very grateful. He's not afraid to diverge from the "norm" for the benefit of the patient.

All the best, Mary Ann

soromer
Posts: 130
Joined: Mar 2011

I wish that you had had better results from the Megace, and I hope that you have good news from your upcoming scans.If there were one sole effective treatment for cancer, I truly believe we'd know it. The damned variability of it all is confounding. Definitely art, not science, as observed below.

It is a good thing, as people also say below, for each of us to share what's going on regardless. I hesitated to share my good news--but then, I realized that it's no guarantee, one set of scans to the next. Might as well share the good when we have it, and the bad when we have to carry that instead. It's the sharing that matters most. We will each do with the information as we will.

I second your good wishes for us all.

Peace and blessings to you, Sara.
Kate

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending you continued prayers...

Please remember, we dance with the great news and embrace with the not so great news...

We are here to listen, comfort and help. Please keep us posted on your next round of test results....Hang in...

Laurie

bell_ella
Posts: 7
Joined: Jan 2012

What do you mean by 'since my tumor cells were strongly ER and PR +,'?
How do you find out about it and then wheat do you do with that information?

bell_ella
Posts: 7
Joined: Jan 2012

What do you mean by 'since my tumor cells were strongly ER and PR +,'?
How do you find out about it and then wheat do you do with that information?

bell_ella
Posts: 7
Joined: Jan 2012

What do you mean by 'since my tumor cells were strongly ER and PR +,'?
How do you find out about it and then wheat do you do with that information?

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

My doctor suggested doing hormone testing on my tissue (samples are saved from surgery). Doctor will use this info (as they do with the tissue assay/functional profile) to determine if hormone therapy will be beneficial.

My results were 95% hormone negative - my doc said that hormones would not benefit me.

It makes sense to have these tests early on so docs have information to help with decisions. Sadly not all doctors do this. That is one major benefit of this website - gaining information for us to be proactive in our own treatment.

I encourage you to talk to your doctor about this and perhaps even ask if there are any other tests that can be done. Definitely discuss the functional profile too (test chemo sensitivity).

My best to you. Mary Ann

JoAnnDK
Posts: 276
Joined: Jun 2011

Thinking of you today - it is today that you have your CT scan, right? Will you get results soon?

Keep us posted, please.

JOANN

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

Well,
There was an increased size of a very small lymph node. But the problem seems to be near surgical entry/exit of most recent recurrence surgery and colon resection and debulking of 8 cm mass.
It seems near internal staples , sort of x marks the spot there is 'spongy ' round 2-3 cm mass. They are now suggesting PET scan.
I am still somewhat experiencing diarrhea from drinking 'dye' stuff three days later and am not looking forward to rebeginng with similar stuff early next week.
A second oncologist suggested waiting three more weeks so I can finish fourth round of 1 per three week Gemzar/ carboplatin and in three weeks Pet will be more definitive.
Another Onco, mine is insistent that I do pet next week which will be two weeks from last Tx and a few days before next one, Thursday.
Blood, whites,platelets and reds still Very Low !

Radiologist who read scans feels cancer growing and chemo not working so why delay radiation treatment for magical number of four chemo set. But he does say he isn't an Onco.

So warriorettes, what do you guys say?

Sara

P.s. ironically my mood is better as I feel there is data and beginnings of plan!

HellieC's picture
HellieC
Posts: 461
Joined: Nov 2010

Firstly, Sara, I am so sorry you are facing this so soon after surgery.
But it does seem from what you have said that two opinions concur and are suggesting an immediate PET? Perhaps it is worth asking them all what risks there would be in waiting to do the PET versus doing it now. Would a delay of 3 weeks(and possible increase in size of tumour) make a significant difference to the effect of the radiotherapy? I guess there's no right or wrong way to go here - just what feels right for you
Wishing you well
Helen

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

Dear Helen,
Thanks so much. Made a PET appointment for Sunday, but can postpone if need be, put in call to my main Onco and will raise questions.
Thanks for your input.

Sara

Rewriter's picture
Rewriter
Posts: 496
Joined: Dec 2009

Sara--

I seem to remember that your main gyne-onco is Peter Dottino at Mt. Sinai Hospital in NYC. Is this correct? If so, then I would trust anything Dr. Dottino says; he is one of the finest gyne-oncs in the country and the mentor of my fantastic gyne-onc.

Best of luck to you.

Jill

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

Thanks. Sent him CT info.
I live out of the US, my main Onco is here, but he is all for my consulting with anyone I think can help.

Sara

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

Thanks. Sent him CT info. Dottino is my surgeon, did original (2010) and recurrence surgery (2011).
I live out of the US, my main Onco is here, but he is all for my consulting with anyone I think can help.

Sara

Kaleena's picture
Kaleena
Posts: 1227
Joined: Nov 2009

Sara:

Here is something to ask your radiologist (By the way is he/she a raadiologist/oncologist?

1. Ask where will the radiation be directed and what is the expected results.
2. Once you have radiation in that area, can you get radiation there again in the future
if needed. (Most of the time it is a no).
3. Benefits of additional surgery over radiation.
4. Should you try a different chemo first prior to radiation.

Sara, I am glad your mood is better. Once you start making the decisions and the plans you will gain the strength you will need!

My best to you and strength to all of your decisions.

Kathy

RoseyR
Posts: 464
Joined: Feb 2011

Mary Ann,

I assume that tissues "saved" from surgery are good for only a few weeks, if that? (No chance of having tissue tested long after a surgery>)

Thanks,
Rosey

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

I beleive samples are saved for years. I think JoAnn mentioned 8-10. I'd check with your doc. One downside to consider: since cancer is so unpredictable, how long are those assays really accurate? If cells mutate then the original drugs may not be effective. These are just my thoughts - don't know if they are accurate but you might check with your docs.

Let me know what you find out. Mary Ann

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