No miracle today (Recap of Lost Posts, Topic Created by evolo58 on Nov 06, 2018)

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This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

 evolo58

Nov 06, 2018 - 5:36 pm

I wish I could say the news was good. It wasn't.

I knew the possibility of this being a non-cancerous CA-125 spike was not a strong one, but I kept hoping till the end.

It looks like I have small enlarged lymph nodes and spots on my mesentery, mediastinum (right around the lungs ... yipes), aortic valve, peritoneum (wait ... didn't she remove most of that?), and possibly one on the liver (oh, COME ON!). About the only consolation is that they are small ... right now.

So ... it looks like chemo. I see what you ladies mean. Gyno-oncos get pretty cagey about a timetable at that point.

First, she said she'd check after three infusions. "Great!" I responded. "So there if is a chance the six infusions work, I could get off treatment if these things are shrunk and I stay out of trouble?"

Hemming and hawing.

Then she might consider putting me on Avastin as a possibility.

Great!" I responded. "So if after a series of clean scans, I'm good, maybe I can taper off the tests and scans and get off for a while unless we see problems.Just use Avastin for a while as maintenance until we see promising results?"

Hemming and hawing.

Good grief, this is frustrating! And no ... I do NOT intend to spend the rest of my life hairless. Many of you 4Bs on long-time therapy seem to have hair, and are living full and productive lives ... for many years. I have read many stories here of ladies with UPSC who have had mutlple recurrences, yet were still here for many years.

Am I going to be one of those ladies who live five, ten or more years? I have no idea. But reading your stories here have been so, so inspirational, and some of you HAVE passed that mark, even with recurrences.

I might falter now and again. Please forgive that.

 

LadyMox

Nov 06, 2018 - 6:06 pm

I am so sorry to hear this.

I am so sorry to hear this. At least they caught it when they were small but still don't make it less crushing. 

 

zsazsa1

Nov 06, 2018 - 6:18 pm

Hang in there

I'm so sorry that the news is bad.  Did you ever have testing done on the tumor to see if it could possibly respond to some of the newer treatments?  Can they get a biopsy of it to do new testing?  Could it be useful?  Herceptin?  Metformin?  Anything else?  Consult at a major medical center?  Just in the two months since I've been diagnosed, two new treatments have been confirmed as being useful - herceptin in her2/neu positive tumors, and stereotactic radiation (Cyberknife) in isolated metastases.  That tells you the rate at which new research is bringing out new treatments.  There is still hope.

 

LisaPizza

Nov 06, 2018 - 6:29 pm

Damn. I definitely also

Damn. I definitely also recommend a second opinion and tumor testing. Even if it doesn't change anything ... you deserve not to suffer those lingering doubts. Hugs to you, and glad you updated us.

 

EZLiving66

Nov 06, 2018 - 6:33 pm

I'm sorry to hear that but,

I'm sorry to hear that but, they are small and could respond to chemo or, one of the other new treatments.  There are plenty of women living great lives with Stage IV and new treatments are coming out all the time.  A second opinion sure doesn't hurt!

Love, 

Eldri 

 

CheeseQueen57

Nov 06, 2018 - 6:55 pm

Heartbroken

I‘m heartbroken that you are going to have to gear up for battle yet again. I’m kind of confused by what’s going on and the goal but it may just be me. I find these days I’m often easily confused. Either way, we’re here for you where ever this journey is going to take you. 

 

Jairoldi

Nov 06, 2018 - 7:00 pm

That is not what anyone wants to hear

Oh my, that was a lot for you to digest. I'm with the other ladies, rooting for you as you navigate the next steps.

 

oldbeauty

Nov 06, 2018 - 7:21 pm

So sorry

What a disappointment; I am so sorry that you did not get the news you hoped for.  What I would want to know is whether any of these spots (the lymph nodes perhaps?) is accessible for a fine needle biopsy to get cells to analyze and possibly identify which of the varieties of cancer you've been told you exhibit may be driving the bus this time in order to develop a targeted treatment.  On the one hand it would appear that you did benefit from the chemo regimen.  On the other hand, you've recurred soon after treatment ended.  If it is at all possible to get tissue to analyze and test treatments against, that, it seems to me would be ideal.  From your description of your consult today, it seems either your doctor is not yet prepared to give you a definitive treatment plan or so much was thrown at you that you were, understandably, overwhelmed.  Once she settles on a treatment plan, and you fully understand what the objective of the treatment is, I would urge you to gather your records and find a second opinion consult to ratify what your doctor proposes or suggest alternatives worthy of consideration.  It would seem this is an important juncture; the recurrence, while scattered, is early and hence I would think you have time to take a deep breath and screw up your courage once again to identify the best course for you.  Best wishes, Oldbeauty

 

MAbound

Nov 06, 2018 - 8:15 pm

Ditto

Aww! This just sucks! Ditto what everyone else said because there are just no words that help for these setbacks. Da**! Da**! Da**! 

 

evolo58

Nov 06, 2018 - 10:17 pm

Dr. Expert

The next step is to make an appointment to see my second-opinion. I have already written to her nurse, and the doctor is willing to take me on as a patient, if I wish. I've referred to her as "Dr. Expert" previously. She was the one that I really, really wanted the first time, but the insurance department over there !@#$ed up, then my next insurance would not cover her. (Sorry about the language. I'm still mad about that.) She is an expert in UPSC ... has written many papers on the subject. While this facility is not MD Anderson, and my current facility is no slouch (rather not disclose a specific location), this second facility has a better reputation for gynocological surgery ... top 50. 

My current doctor is dour ... has a horrible bedside manner. It's as if she is starting to plan my funeral, and I do not need that. One thing I learned from reading bios here, past and present, is that it IS very possible to hit the five-year mark with UPSC ... even with recurrence. Even with more than one. I read of some bios of past posters here who made that point, despite obstacles. Is it common? No. Will recurrence cause some problems with that goal? Yes. And some women with UPSC are edging torward that ten-year mark ... even with multiple recurrences. 

This doctor does not sugar-coat, but is not negative. She appears to me to be eager to give me the best quality and quantity of life as possible. My family even likes her atittude. My current doctor has an excellent reputation, but I don't "click" with her, if that makes any sense.

I have read that many of your doctors say that while options can be daunting, they have different options that have the promise to work. My current one offers that, sure, but not particularly enthusiastically. For instance, she says there is no one "best option" of the choices she offers, and that all have a 20% chance of success. 

Well, imagine getting some lottery tickets. You have five ... seven ... ten. Heck ... I'll give you twenty. Four of them have a 20% chance of giving you a prize; be it a good one or a great one. 

What this doctor didn't tell me, and what I've read here and elsewhere, is that if one lottery ticket doesn't work. another might. Or another. Very often, you can try more than one. Sometimes three or four!

Yes, none might work. But it's not often like you pick one and that's it. Many ladies here have tried different treatments and options. Some worked better than others. Yes, there is the possibiity you get a bum lotttery ticket. But there is another possiblitiy that another 20% one takes the place of one that doesn't work. Or you get two 20% ones at a time.

You keep trying, and you keep trying hard. That is what I'm learning from here and from LorettaMarshall on the Ovarian Cancer board. Geez, Louise ... looking at what she went through is daunting. Maybe my cancer is more agressive than hers. Or not ... she apparently had two primaries at the same time; both advanced-stage and both aggressive. Honestly, I don't know. But hers hasn't exactly given her a nice ride, either. Yet at age 79, she is celebrating six years from her first diagnosis, and is now starting her seventh year. No matter what, she far outlived the time span my dour doctor predicted for me ... more than twice over.

I have no idea whether I'll last twenty minutes or twenty yesrs. But here's the punchline ... no one does. I just have an extra obstacle that others do not. A nasty one, admittedly. But no one can predict how long they will live.

We need to be here for each other. We read what treatments others have tried. We get the skinny on the side effects that doctors sometimes play down, and read what other facilities are trying. We can ask our doctor questions. We exchange tips and tricks for getting through this !@#$. If I listened only to my current doctor, I really would be tempted to just hang myself off my deck.

Thank you all, past and present.

 

LisaPizza

Nov 06, 2018 - 10:10 pm

That was quite inspiring, I'm

That was quite inspiring, I'm sure to all of us. Thank you.

 

NoTimeForCancer

Nov 06, 2018 - 8:54 pm

I have always thought, “you

I have always thought, “you gotta love your doctor“, especially since you are supposed to be working together for you. Go get that doctor you want. I am sorry to hear about what they found but no one knows how long any of us have so keep at it and tell us your plan. prayers for all warriors.

 

derMaus

Nov 06, 2018 - 9:14 pm

I'd run away from that doctor

I'd run away from that doctor as quickly as possible. I never understood the emphasis on robotic surgery with a known high-grade prognosis, and then to not take any lymph nodes...oye vey. You've had far too short a time between end of treatment and recurrence but, given how conservative your surgery was, it's very possible that some of the mets you're seeing now we already there before. I say that because, in my case, 37 lymph nodes were taken and my recurrence occurred almost at the previous surgical margin. Fortunately they haven't (as of today) gone any further than that, which gives me some hope that your pesky friends will remain contained as well. I read some of your previous posts where you talked about different things lighting up on the previous scan, so it's possible that this was there all along and has grown relatively slowly, vs. just arose overnight. As LisaPizza and Oldbeauty have said, you need geonomic testing, aka F1, stat. It takes about 3 weeks to get that back so the sooner you can have a biopsy sampled and sent off the better. Also - because I'm so predictable - I'm going to bring up stereotactic radiation, aka CyberKnife, for those small tumors. It's frequently used on lung tumors and can possibly clear them right out. Guess your current onc hasn't said anything about that, either? I don't know her but I sure don't like her; I'm indignant on your behalf. Hugs and prayes, B

 

evolo58

Nov 07, 2018 - 3:03 am

Already did that.

My current doctor has it. That was part of the deal .... I would receive it for no or much-less cost, but since she ordered it, she would keep it, answering any questions I might have. I do have one mutation. Not a common one, but I may be a candidate for Votrient. (FGFR2). It's not common for treatment of endometrial cancer ... yet ... but women who are on another board who managed to get it have had excellent experiences with it, for the most part. Not too many awful side effects. The worst side effects most have experienced have been changes in hair color (they tend to go blond and brassy) and they bruise easily. And it's a pill. Better yet.

Let me be honest ... I'd rather be a live banana with brassy blonde hair (maybe I can dye it green) than a dead brunette. There IS, unfortunately, a risk of liver damage. I would have to watch that. But EVERY poison we take has a risk or two or three, doesn't it? It is still chemo ... just in oral form. And as always, your WBC and platelets can take a hit. Strangely, though ... your RBCs don't seem to be as affected as with the usual chemo plans.

Source:  https://www.ncbi.nlm.nih.gov/pubmed/27905309 (Sorry ... I STILL can't link it without going to plain text.)

I am not MSI-unstable, unfortunately. I know some treatments respond to that. Not ER or PR positive.

With genetic testing ... No Lynch syndrome or BRCA1 or BRCA2.

I do not believe I have HER1 or HER2. I asked about that.

I wish I did a tumor-assay test. You advised me to do it, but frankly, so much was going on at the time. At least I got the F1 under my belt. 

Once I see Dr. Expert, you ladies know me ... I'll tell ya and those on the other site I visit what she said. Goodness ... I haven't been shy about my bathroom habits! I can't see being shy about what Dr. Expert has to say.

 

MAbound

Nov 07, 2018 - 9:31 am

You are awesome!

I'll admit it...I was really down last night after seeing your CT results. Then I get up this morning and see your new posts and can't help but think wow!  I'd give myself some time to wallow in feeling sorry for myself, but here you are looking at your options and making plans. You are amazing and like I said earlier, that beast better run because you aren't going to give it a chance to best you. You may be inspired by others here, but you're pretty inspiring yourself.

 

evolo58

Nov 07, 2018 - 1:12 pm

As I see it

Ain't got time to cry ... yet. I am angry and really worried, though, so I'm not exactly inspiring.

I want to find the best solution that has the best chance of giving me quality and quantity of life .... period. No hemming and hawing from doctors, and I know there is a chance that the initial try may not work. But I want to get on the right foot.

I expect nothing less. I have been through enough Hell, thanks. 

I want hair. I heard Avastin causes it to grow more slowly ... fine. Fewer haircuts, and I don't mind the pixie look Voltrient (if it ever becomes available wide-scale)  makes it lighter and brassy-colored. Fine. Not the best color on me (I look awful as a blond), but I'll live with it.

I want to be able to get back to exercising. I want to go for long walks in the park with my husband. 

I would prefer that the treatment not be worse than the disease, thanks. 

And I want the doctor that will work with me the hardest and give me the most hope. I know things are rough. She does not have to tell me that. 

Not too many demands!

 

CheeseQueen57

Nov 07, 2018 - 9:58 am

Get yourself a plan...as I see it

Sounds like you’re thinking straight. My philosophy is to try the most effective therapy with the most promise and try not to let the side effects kill you before the cancer does. Horrendous balance for all of us. I knew that I ignorantly thought that once I was done with surgery, chemo, and radiation I would be going about my merry way back to my old life. WRONG!  I will be constantly fighting for my life as long as I live and meanwhile doing everything I can to try not to let cancer and the treatments steal my joy for life for whatever time I have left. Some days I succeed and some days I fail horribly. That is the life of a cancer survivor. 

 

janaes

Nov 06, 2018 - 9:52 pm

Im so sorry to hear this news

Im so sorry to hear this news. At the same time i am glad you can come here for support. There is so many that care about you. I am glad they caught it early. 

 

SF73

Nov 06, 2018 - 10:20 pm

Evolo. I am so sorry to hear

Evolo. I am so sorry to hear about the news. Please do get that second opinion. You need a doctor who is up to date with the research and has a can do attitude. It can make such a huge difference. Yes, there are different treatments available and yes even though each having 20% chance of success, you dont toss the coin once. If we can assume that each treatment is independent of each other, 5 treatments with each 20% of success, the change of NO success is 0.8*0.8*0.8*0.8*0.8=0.32! You have a better chance of success. I really hope that you get to success in your first attempt. Hugs!  

 

evolo58

Nov 08, 2018 - 5:50 pm

Seeing Dr. Expert on the 15th

I feel so much better. 

I had to smile at one finding, by the way. It mentioned a lymph node enlargement near my armpit.

Well ... err ... a few days before, I had the boobie squished really hard twice in two weeks for a diagnostic mammo. I would think it WOULDN'T be happy! The mammo showed nothing. Kind of makes me wonder about one or two of the other findings ...

Some swollen lymph nodes near my intestines COULD be the result of my intestinal complaint that went on for two or three weeks. 

But then, but then .... there is the issue of the nodules; particularly the pertioneal-related ones, and the lymph para-aortic lymph nodes. Those would not be due to swelling. So that is why I need the second consult.

 

barnyardgal

Nov 07, 2018 - 2:49 pm

Shoot. I'm so sorry. I'm glad

Shoot. I'm so sorry. I'm glad you're getting that consult. Trusting and liking your doctor is really important. 

 

Armywife

Nov 07, 2018 - 10:09 pm

Wow

Girl, I am so sorry you're enduring this.  Can totally relate to the scared/mad/getafterit/scared cycle.  We are here for you.  So very glad you're going to see Dr Expert!  

 

pato58

Nov 08, 2018 - 10:53 pm

Hi evolo58

Sending you good vibes and thoughts.

 

ConnieSW

Nov 12, 2018 - 1:16 pm

Good luck on the 15th

When I saw this quote, I immediately thought of you. "You may not get to choose what happens to you, but you get to decide how you are going to react to it.".  (Erin Cole) You surely are doing that. Stay tough.