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Bad CT results today; Megace recommended next (plus complementaries). Uncertain and scared.

soromer
Posts: 130
Joined: Mar 2011

By way of background:
Dx in Feb 2011 with Stage IIIC2 Endometrial Adenocarcinoma; spread was to pelvic and para-aortic lymph nodes, with some evidence in cervix, too. ER and PR both +3. My CT scan in March, just before starting chemo, showed some enlarged lymph nodes and one small (5mm) lung nodule. At that time, my gyn-onc said they were "not concerning." I completed 6 rounds of doxorubicin and cisplatin at the beginning of August. I didn't have a totally easy time, but it wasn't unbearable, either. Only serious complication was neutropenic fever after round 1. Since then, Neulasta has been helpful.

At each monthly exam and consult, my labs have been good and my pelvic/rectal exam has been clear.

I had a follow-up CT scan on Tuesday this week, ordered by the radiation oncologist in part to prepare for that form of treatment--expected to start later this month.

Instead, I heard from my gyn-onc tonight that the enlarged lymph nodes were still as bad, if not larger, and that I now have nodules, plural, in my lung (or lungs, I don't recall). The radiation seems moot at this point to all docs concerned. So the treatment my gyn-onc now recommends is Megace.

I am staggered, floored by this new bad news. I don't know much about Megace, except that I have gathered that hormonal treatments are not considered curative but palliative. Is that indeed so? Is it possible that Megace as a treatment can be measurably effective? My gyn-onc says she has many patients who have been on it for a "long time," but I didn't ask her for specifics. I see no point to that. What was estimated to be effective did not work for me.

I know that many of you valiant women posting regularly here are already dealing with this so-called palliative condition. I didn't expect to have to deal with it myself, at least not so soon. This is supposed to be a "garden variety" cancer, one that is easy to handle and treat. Ha!

More importantly, though, I am really not sure what to do next. Except, now I feel liberated in a sense to go whole-hog with the anti-oxidant diet and supplement regime--I held off during chemo, since that was supposed to be the way the chemo would be effective.

If anyone has experience with taking Megace that she wants to share, I would appreciate it. I did some searching of the older posts, but what I saw was pretty discouraging.

Thank you all in advance. I'm going off to cry some more tonight, and hope to be better prepared to face all of this tomorrow.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I can see that you are grappling with bigger issues that the efficacy of megace, so I'll respond to those 1st. 'Palliative' is word most of us react to poorly when it initially slips out in a discussion of our treament options. Suddenly it sounds like they've stopped trying to cure you, and that feels just awful. But in reality, many measures of palliative care start almost on Day One of your treatments. Every time your oncologist denies you chemo because your counts are low, or pooh-poohs your insistance that they crack you open again and cut out the new spots, he is integrating palliative care into his decisions. So please don't let that word haunt you. When your cancer metasticizes elsewhere, your goal is no longer to fight for a cure (although it may happen!). But now you have a new goal that is almost as hopeful. Now your goal is find a treatment that will buy you time on this beautiful earth and still allow you to ENJOY the vibrant happy days you have left. Because if you FEEL healthy, well, it's almost as good as BEING healthy. AND, ....here's the best part,...the other part of your new goal is to hold your cancer in check long enough for you to be here for the NEXT great new experimental treatment that will buy you another couple of happy busy years,..and then another,..as you leap-frog your way into a long life of feeling healthy most of the time and making the most of it when you do.

So, about the megace. They recommend it for strongly ER+ and PR+ women because it has a similar statistical efficacy percentage as the other second line chemo options, and it is SO much easier and less intrusive as you just take your pills at home or carry them along on a vacation, etc. I've been on it 15 weeks in combination with tamoxifen and the scan I had in mid-July showed that my cancerous lymph nodes are not at all enlarged, absolutely stable from the scan I had in April when I went on a 4-month chemo break to have radioembolism to the mets in my liver that seem determined to kill me despite 4 different chemo drugs that each allowed chemo progression. (My blood counts tank when I'm getting chemo and I couldn't risk low platelets for the 3 radioembolism surgeries/procedures I had this summer). I'd read a study where 23% of even those who were ER- and PR- and took this combination of tamoxifen/megace showwed a response. (Results for those like who were are strongly ER+ and PR+ were much better.) I considered it a long shot, and honestly, I took them just to let me think I was doing SOMETHING to attack my malignant lymph nodes while I was ignoring them to concentrate on my liver tumors. I have had no side affects from them at all, almost like they were another of my vitamins. But they have held the cancer in my lymph nodes stable, and for me stable is just fine. My cancerous lymph nodes are not hurting me (I can't even feel them!) and are not at all enlarged and if they stay that way and leave me alone, stable is great. My oncologist is impressed enough with the surprising results that I'll be continuing this chemo break even now that all my radioembolization surguries are over and just keep taking my little pills and living my happy life for awhile longer.

(((hugs)))

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

What a wonderfully appropriate & inspiring response--I loved what you wrote! Attitude means so much and you are living proof of that Linda.

Carolen

HellieC
Posts: 427
Joined: Nov 2010

You always have such a wonderful attitude, Linda.
With your permission, I will cut and paste your post into my own personal documents. I may need it for two reasons!
Firstly, because I think that every oncologist in the world should read it, so that they learn and understand how they should introduce the word "palliative" to patients.
Secondly, I know that should I face the word "palliative" (and, to be honest, after 2 recurrences, although I am curently NED, I have to accept that it may apply to me one day) then I hope that your words will give me strength to continue to live life to the full, accept my treatments and keep going forward.
As always, Linda, you are an inspiration.
Hope you are feeling back "on the up" after your most recent radioembolism.
Kindest thoughts
Helen

soromer
Posts: 130
Joined: Mar 2011

I do appreciate the nuances of "palliative," and yet, it is as you say: I wanted to have done with this sooner than later; I wanted a rapid "cure." I understand that it is possible to keep on going from treatment to treatment and also have a good life. I feel well now, in truth, and have felt mostly fine ever since the hysterectomy--apart from the chemo weeks. I think I believed that I would be in the successful camp so strongly it comes as a shock simply to be wrong.

I am glad to hear of good results possible with the Megace. I am also glad to hear that you yourself have benefited from it so clearly. I'm on Megace alone and don't know what, if anything, would prompt my gyn-onc to prescribe a Megace/Tamoxifen combo.

I'm about to take my first dose tonight. It feels rather mysterious, to embark on this new segment of the journey. Thanks for encouraging me to believe that it has promise, too.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I may seem all strong now, but I DO remember the day we got my scan results verifying my 1st recurrence as one of the darkest in my life. So please don't think I am at all flip about the place where you are right now. We were all so sure I'd beat this thing for good and I'd been 'living large' in remission with a white-hot joyous celebration that woke me each day with a smile on my face that lingered so long my face muscles would get tired. And then, BLAM!-it's back. I felt like I was experiencing my own funeral, as one after the next, each of my family and friends collaspsed sobbing in my arms when they got the news. My DIL was crying so hard on the phone to me coming home from work that I had to have her pull over and calm down. My 8-yr-old granddaughter Emily was crying so hard that they called me to come over and sleep with her and get her through that night. It was unforgettably horrible and I know that heartbreak is where you are right now.

But when 10-yr-old Emily is worried about me now, I remind her of that night, and say "Wasn't everyone so silly? What were we all so scared of to cry like that? Look how good we've done and how much fun we've had since then."

And I see that peace in your future, too, after you get over the heartbreak of returning to treatment. I led my family and friends out of that dark place by my own example of hope, acceptance, and determination. And they've followed my lead and roll with the punches now. I know you will be able to do the same. Deep breath, chin out, game face on. (((hugs)))

Kaleena's picture
Kaleena
Posts: 1015
Joined: Nov 2009

Thank you, Linda!

(((Hugs)))

soromer
Posts: 130
Joined: Mar 2011

Dear Linda,

I appreciate your later response, acknowledging how difficult it was for you at first.
I had a bad couple of days, then a good couple of days, and now I seem to be in a bad couple of days again.

Since I have found out this result, I have already experienced the response of withdrawal from people in real life (as well as on the boards) who find it uncomfortable to deal with someone in my very vulnerable position. I am not generally weepy; I am pretty straightforward and matter-of-fact with most people in public, as well as with my family, most of the time. For someone who has just heard really difficult news, I think I am coping pretty well.

But when my 14-year-old daughter takes to her bed with worry because I cannot in all honesty tell her that I will be all right, then it is very hard for me to take. It was all I could do to be reassuring and confident, when my heart is breaking for both of us. And I wish I had more people in my life able to tolerate my expressions of fear and dismay, so that I could get through them and rally myself for more positive action.

I am not feeling sorry for myself. I am stating as clearly as I can what it is like for me to be where I am. And I am still interested in hearing about other women's experiences with Megace. Before you weighed in with yours, Linda, I didn't know that it is often paired with Tamoxifen; I need to know why my gyn-onc didn't put me on the combo. More individual experiences, anecdotal as they may be, would still be helpful for me to prepare the questions I should get answered (by her or someone else).

Thanks again.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I hope you get some other 'megace' experiences posted here. You can use the SEARCH mechanism and pull up older posts discussing megace if you prefer not to wait for others to check in. My heart goes out to you. I always say that EVERYONE on this earth dies, not just us. But we with cancer KNOW that we are not immortal; and it's the KNOWING that sets us apart and alienates us from those who can't bear to think of it. And it's once we accept the KNOWING that we begin to make our peace with it. Give yourself some time to process it all; I promise you that there is joy and life in your future, cancer be damned. ((((hugs)))

I found (in an email to my oncologists) that article I mentioned on the study using tamoxifen and megace together: (http://www.medscape.com/viewarticle/586334_2 )

Tamoxifen Combined With Progestins. The Gynecologic Oncology Group (GOG) conducted two studies that combined progestins with tamoxifen using different schedules. This strategy was chosen to avoid the downregulation of PR that occurs with continuous treatment with progestin alone, the hypothesis being that intermittent treatment with progestin would permit tamoxifen to induce PR and thus enhance the effect of progestin therapy. In the first trial, patients received alternating 3-week courses of megestrol acetate and tamoxifen.[20] The overall response rate was 27%, the median progression-free survival was 2.7 months, and the response rate in patients with grade 1 endometrial cancer was 38%. Patients in the second trial were treated with continuous tamoxifen plus alternating weekly cycles of medroxyprogesterone acetate.[21] The response rate was 33%,with a median progression-free interval of 3 months. Although these response rates are higher than those reported for progestins alone, the progression-free intervals and overall survival rates are similar. A correlative study to this second trial explored the relationship between hormone receptor status and response to the combination of tamoxifen and megestrol. Interestingly, response rates were high even in patients with estrogen- and progesterone-negative tumors (a response rate of 26% for estrogen-negative tumors and 32% for progesterone-negative tumors).[22] The toxicities, which principally were weight gain and thromboembolic events, were tolerable with both regimens of tamoxifen plus progestin.

References:

20: Fiorica JV, Brunetto VL, Hanjani P, et al. Phase II trial of alternating courses of megestrol acetate and tamoxifen in advanced endometrial carcinoma: a Gynecologic Oncology Group study. Gynecol Oncol. 2004;92(1):10-14.

21: Whitney CW, Brunetto VL, Zaino RJ, et al. Phase II study of medroxyprogesterone acetate plus tamoxifen in advanced endometrial carcinoma: a Gynecologic Oncology Group study. Gynecol Oncol. 2004;92(1):4-9.

22: Singh M, Zaino RJ, Filiaci VJ, et al. Relationship of estrogen and progesterone receptors to clinical outcome in metastatic endometrial carcinoma: a Gynecologic Oncology Group study. Gynecol Oncol. 2007;106(2):325-333. Epub 2007 May 25.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I would try a second opinion. It seems to me most of us have been treated with chemo when we recur. I think you need to explore why that is not an option for you. I can't remember if this is my third or fourth recurrance but I have been on chemo. I am on gemzar and having good results. I didn't have good results with topotecan. My Gyn onc told me some women have good results with oxiplatinum four months on and then off six months. She uses this after we have used alot of options up.

I know the feeling when people abandon you when they find out you have recurred. I felt hurt too, how can you not? But then when these people saw me digging into life and laughing too they seemed to stop in their shoes. I have learned who the best friends are and given those who are afraid to invest in me some slack. I have learned not to tell those people alot about my illness. I've learned there's a difference between really caring and just being nosey. I have cried alot in the past and saw a therapist for a while for a good place to cry. I think the crying has helped me; I rarely cry no and find myself giggling with my family and friends.

So cry now and mop up the tears. My daughter and I drove by one neighbor that has been a real downer (I could write a ton on this). I impulsively said as I drove by, "ha, ha, I'm still alive." My daughter burst into laughter, rolling on the car floor and I didn't even know I was funny. But through the sorrow you can find life again, a new life, better than before.

I still hope you get a second opinion.

Love ya, Diane

Kaleena's picture
Kaleena
Posts: 1015
Joined: Nov 2009

I would definitely get a second opinion. What can it hurt? I was told back in 2009 that I had a recurrence. The doctor wanted me on chemo right away, wanted to try to shrink it before trying surgery, get surgery (and probably end up with a permanent colostomy) and more chemo and then more surgery if necessary.

I went to another doctor (who ended up being from the same group but from another hospital) and they just wanted to do radiation. My radiation oncologist said that if I had radiation in that area that would be the only time I could get it and if it came back then it would potentially be fatal. The other doctor in the room who was there to see if he could operate said that surgery wasn't an option. It would take at least 10 hours and if he couldn't get it all he wouldn't do surgery. (By the way, he didn't even look at my records or charts)

I go out of state to see a doctor that wasn't affiliated with anyone locally by me. I had gotten my records, slides and whatever else I needed and gave them to my new doctor. They had a review board and analysed everything. He indicated to me that there would be two types of surgery. A long surgery or a short surgery. Of course the short surgery would be better but it depended upon the findings.

First, they reconfirmed my biopsy findings (they were still positive); After discussions with the review board, the doctor was confident that they would be able to remove the mass and have clear margins, although there was always the chance of having a colostomy, although it could have been temporary too.

I had the surgery in February of 2010. Not only did he safely remove the mass, it was negative. They also performed another surgery to fix my huge hernia from my surgeries in 2005. And most of all, I did not have a colostomy. Also, since the only thing they found was a lymph node with microscopic cells which was removed, I have had no treatment except for a couple of PET scans to watch.

Please explore all the options and just don't take one person's opinion.

My best to you.

Kathy

california_artist
Posts: 850
Joined: Jan 2009

Wow! I am so awed by all you did to take care of yourself. To keep on trying to find an answer that felt just right for you. Very, very happy things turned out alright. Truly.

May I ask, did you just have a sort of nagging feeling that the answers you contiuned to get didn't seem right. And settled when things felt right for you???

claudia

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

Is this a new painting? Gorgeous! I love the colors and wish I had a larger version so that I could see their eyes a bit better. You are so talented.

california_artist
Posts: 850
Joined: Jan 2009

I'll send you one later today via email. You can print out a copy if you like.

The name of the painting is Friendly Advice, sorta felt appropriate for the board and the feelings we have for one another. How we are all just trying to help one another out in one way or another.

Kaleena's picture
Kaleena
Posts: 1015
Joined: Nov 2009

Claudia:

I gave you a reply to this (actually a really long reply) and I don't know where it went!
If I don't find it, I will retype it.

But short end of it there were many signs that they were only interested text book procedures instead of patient care and patient history and facts.

Kathy

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

You are proof that being your own strong advocate has very positive results. I am so happy that you avoided the difficult treatments and life-changing surgeries that were proposed as your only options. You are definitely a role model for me.

Big, big hugs,

Jill

Kaleena's picture
Kaleena
Posts: 1015
Joined: Nov 2009

Thanks Jill:

We are all faced with difficult decisions in our lives. I think taking control and making our own decisions (whether right or wrong) is a very positive thing to do. I mean really who knows ourselves better? Do you tell your doctor everything? Not always. We forget, topic changes, etc. I rather a doctor tell you this is what I see this is what I am willing to try, these can be the outcomes, but nothing is ever certain, and you can always get a second opinion.

Sending big hugs your way!!! {{{Hugs}}}

Kathy

P.S. I love your dog!

soromer
Posts: 130
Joined: Mar 2011

What a journey that sounds like--and what a good outcome.

I do have a second opinion scheduled for next week, at another Comprehensive Cancer Center that is near me. They're supposed to have everything to look at, including path slides, so we'll see what they say. I'm a little apprehensive about it, but also looking forward to it--a chance to hear from someone else about what's going on~!

Thanks for your reply and your best wishes.

soromer (Kate)

soromer
Posts: 130
Joined: Mar 2011

Dear Diane,

I am really glad that you and your daughter got a laugh out of it together. I am hopeful that my daughters and I will reach that point too. And soon....

You are right about the difference between genuine interest and nosiness. Most of the time I am keeping my counsel about all of this, in part because I still have some employment-discrimination issues to resolve and I can't afford for a lot of news to go public. But yes, I have definitely learned who my true friends are, and am grateful for them every day! My cancer support group is also awesome.

Maybe I'll try that crying with my therapist. It seems to come up and surprise me. I can't say I feel immediately better after crying, but I am also a lot more stable emotionally than I was two weeks ago. I can laugh about *other* things, just not quite about the cancer. Although--I did say to my support group and other people that this is a helluva way for me to get out of radiation (since I didn't want to do it so strongly).

I am set for getting a second opinion early next week. I will start a new thread to update after.

Thanks for your reply, Diane.

Many xo to you, too--
soromer (Kate)

JoAnnDK
Posts: 276
Joined: Jun 2011

I have a friend who is a clinical neuropsychologist....and very smart. She told me she believes that tears heal the soul. So cry, cry, cry!

JoAnn

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

Hi Kate,

I don't have much time to repond right now . I too have experienced people and thier withdrawl when you need thier care the most. It's painful.

I was joking with myself last week.

In regards to my cancer diagnosis I prefer to take the "Don't ask don't tell approach" with Non cancer survivors.

I'ts up for grabs now so I figured I'd give it a new home. ;-)

Dianne. Every time I read your drive by comment I crack up. ! I will keep it in my bag of reinforcements.

Grace

JoAnnDK
Posts: 276
Joined: Jun 2011

Kate, how was your second-opinion appointment?

JoAnn

zarkapopovic
Posts: 30
Joined: Jan 2011

Dear Soromer,

Is there a reason that you can't take the Taxol and Carboplatin combo? Have you already had a recurrence?

Z.

RoseyR
Posts: 462
Joined: Feb 2011

Of course it's crushing to hear that you've had a recurrence. But as Linda and others have so well depicted, it's not necessarily cause for fatalism; mistakes can be made.

Please get a second and even third opinion!

As for the withdrawal of some whose support you need, we all sympathize. Although close friends have stuck with me since my diagnosis, a few acquaintances (who had socialized with me, invited me to their house a few times) couldn't be bothered even to send an EMAIL of condolence when my department shared the news that I'd be out on medical leave "for chemo and radiation" for an entire semester.

It's always disappointing to have people shrink just when you need their encouragement. Just try to remember that its NOT personal; they are simply weak and self-centered beings who can't handle the fact that they, too, are mortal and may one day need the very support they're denying you.

On the other hand, I trust you will find, as I did, that even acquaintances you weren't that close to step up to the plate and show you more concern and attention than you might have expected.

In these sitations, we need to see humanity as a whole--capable of great generosity, but also of cowardice and often crippled by fear. Try to forgive them and focus on those who ARE supportive; that always seems helpful.

Love,
Rosey

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