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Why UPSC patients need to INSIST on tissues assays; (from my new recurrance perspective)

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

All this research recently posted plays into the research we did way way back into EGFR and how this factor GREATLY changes the prognosis of anyone with UPSC. And yet it is so hard to get the assays done! I pushed for it unsuccessfully after my initial diagnosis, but they just weren't doing that where I go. Now I see that I should have pushed harder or gone elsewhere, now that my cancer has recurred so quickly. I'll BET that I have most of those 'molecular factors' that would have predicted that my cancer would be resistant to chemo.

I'm not sure I wouldn't have fought for all of the pelvic radiation I received, so this may be a moot point, but I know now that pelvic radiation was a mistake in my case. For me it didn't prevent a recurrance in my pelvis, and now my bone marrow is really compromised from it. I may have a very hard time maintaining good enough RBC, WBC and plateletts to stay on the chemo I need to combat this recurrance, because my body is not yet recovered from my radiation.

BUT, had I known from the get-go that I had a VERY strong chance of recurring and almost no chance of a cure, I could have 'saved' my body for the expected recurrance. I could have taken treatment like the women with ovarian cancer do, (knowing their cancer will come back) taking a break from chemo when my CA-125 was normal and CT was clear and not pushing on with any further treatment until I started to show signs it was coming back again.

As sad as it would be to know almost from Day 1 that your cancer has a 90% chance of recurring (based on the tissue assays), you'd know not to go for 'overkill' in an attempt for a cure, and you'd have a stronger body to endure long-term cyclical repeated weaker chemo regimes.

Of course, I probably STILL would have wanted to slam my cancer with everything my body could bear. But maybe not. I think we have to encourage women with new UPSC diagnosis to get their fresh tissue analyzed for factors. That way they can make treatment decisions with open eyes.

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

All I can say at this point is Amen to that sentiment.

I wish that I could get everyone to rethink their plan of attack.
I wish people would read books like Dr. Boik's and Dr. Campbell's and others that talk of other approach or even natural substances that will enhance the effectiveness of chemo, should chemo be the route you choose.

I wish you recover.
I wish you would try doing some of those naggy things regarding your diet and helping your own body defeat cancer and a cellular level without all the harmful things that I keep on after you about.
I wish you could kill cancer with kindness, but kindness to your healthy cells, not the cancer cells.
I wish you would live a long, happy and healthy life.
I wish we could get people to listen.
I wish our doctors would get backbones and tell us the truth.
I wish our doctors would spell out the percentages of people who survive progression free after treatment.
I wish our doctors would get backbones and protect us, their patients, and really "first do us no harm."
I wish our doctors would get backbones and protect us, their patients, and really "first do us no harm."
I wish our doctors would get backbones and protect us, their patients, and really "first do us no harm."
I wish our doctors would get backbones and protect us, their patients, and really "first do us no harm."...

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Claudia....

I say AMEN to your post.....You are SOOOOO Right!! and I wish YOU a long, happy and healthy life too! You never cease to amaze me and are a true inspiration to me and so many others! Never leave us!!! You always find such interesting studies, etc. that get us all thinking again about our individual situation....

To continued inspiration (plus I LOVE your sense of humor!!)....

Karen

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

Thank you so much. You have no idea how nice it is to have someone say thanks. I was dancing around the living room today telling myself how awesome I was when I could find a way for suzieque to get her meds for free if her insurance company won't pay. But it was just me and my fourteen year old grand-daughter. And while she took time out of her busy schedule to say, "Cool." Somehow it wasn't the same as a real adult person saying cool.

So, again thanks a heap!

Love and hugs,

Claudia

On another completely different note, could you take a moment and go to my gallery and pick the paintings you like most and least. It really helps me plan what to paint. http://yessy.com/madisonraygaller/gallery.html Remember to click on the thumbnails to see the painting in its best form. The thumbsnails don't really show them correctly.
Thanks if you can find the time. You can email me at claudiaallen27@yahoo.com if you want with your answers.

Love and huge warm fuzzy hugs,

Claudia

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

I plan to ask my gyn for tissue assays and any more tests I can get on my cancer next Tuesday. she will probably say it won't make any difference. She wouldn't let me have pelvic radiation as you suggested; she told me if I recurred that it would be harder to take chemo again. As the patient, I often feel like I am second guessing the oncologist. Does that mean she expects me to recur?

I would like to know the good or bad characteristics of my cancer, and if it is resistant to chemo. I would like to know to help plan my life. If my chances of survival are slim, then I would quit work.

I remember feeling a node that was sore in my neck by my jaw when I was on chemo. Now I wonder "was that metastasis?" I forgot to mention it to her. It left after a couple of months.

I often wonder exactly what my prognosis is. Yet I don't know if there is enough information out there to really tell us.

I had this great outlook for a few days, I jumped into life. What happened? I guess it is the ups and downs we all go through.

Diane

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

Diane,

Do you really want to know??

Ours is pap serous, similar to ovarian, except it does not respond as well to chemo and that's an unfortunate fact.

Here is a quote I found today that just blew me away. The paper is written by my old onc oddly enough in conjunction with some others. I was astounded to see his name on the study.

First, here's the url for the whole study.http://www.cancerimmunity.org/v4p10/040811.htm

And here's the part that put me away and actually made me swear out loud. something I never do!

EOC (he's talking about ovarian which is also a pap serous cancer)is the leading cause of gynecologic cancer deaths in the United States (1). While it is clear that most patients with EOC will respond to platinum- and paclitaxel-based chemotherapy, including complete responses, the relapse rate is approximately 85% within two years (2). Once relapse occurs, there is no known curative therapy, and management becomes primarily palliative.

I say we all quit our jobs if we got em and just look into finding something that will actually save our lives. I'm basically an old hippie type, not as far as the clothes go, but the attitude remains. I was at People's Park in Berkeley. Maybe a commune is in my future. I do think that if we and enough other people come together, not just this small group, but a very large number of people, we can solve this problem. Another way to deal with cancer is really needed. Doctors who know what's going on and would like to help find a cure or know of some things that do work, can't be advocates for that, because--THEY HAVE SOMETHING TO LOOSE. We don't! it's that simple. No one can take away my license-- I don't have one. I never profess to be a medical doctor, only say what's on my agenda and that it might not work for you and you must make up your own minds.

I have stood by for a bit now. But since you asked.

I'm Just Sayin'

Love and we'll get a grip. Work this out, and all be fine in the end. We simply can no longer be good little girls and open wide for the medicine.

Your friend and fellow traveler

,

Claudia

culka's picture
culka
Posts: 158
Joined: Oct 2009

Just keep it together. Table of American cancer victims

http://forum.vitarian.cz/download/file.php?id=95

and this is complete study

http://www.burtongoldberg.com/health-articles/contribution-of-chemotherapy-to-five-year-survival-rate-morgan.pdf

this is way I`m doing from the beginning everything possible to avoid chemo. 2.1% or 2.3% is really low.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

dear linda,

i can't say how sorry and angry i am about your recurrence, as well as the information re: tissue assays. i just finished chemo, and am vacationing before having brachey therapy/vaginal cuff radiation. then, my acupuncturist is creating regimen for me to follow during radiation and after. you had emailed me a very caring message re: medical treatment when i was considering just going with alternative treatment. i'm not sorry, at least not yet, that i did chemo, but certainly had i known, would have insisted on tissue assay. we can only make our decisions based on the best information we have at the time, and i agree, doctors are usually the last ones to tell us the whole truth. but, at the same time, i know i did not actively seek out the whole truth. when i was first diagnosed, i couldn't bear to read anything about this dread disease, so a friend of mine did the research, including finding this discussion site and recommending that i particularly read what linda procopio has to say. she filtered the information, telling me what i needed to know, but not more, and that has worked for me, at least in helping me get through the huge surgery and chemo. i can only bear to hear so much at a time, and unlike you, linda, have not done much research myself except to ask questions of our sisters with upsc, so i know what to expect with certain kinds of treatment, and to get advice in general.

i have learned that you can have tissue assay at any time, though clearly it's best before any treatment. my surgeon said that here in walnut creek, (northern california) they do a tissue assay if there is a recurrence. i think if anyone were financially able and wanted to, one could pay out of pocket for one, roughly around $5,000. sad.

linda, you have been such a help to me personally, and i can see to many others as well. i wanted you to know that there are many of us out here thinking of you, and hoping for the very best for you, if not cure, a long, lifetime remission.

warmly,
maggie

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

Your news did not surprise or shock me. While, I had not officially read that info anywhere, I KNEW it already. If I recur, I know it is a beginning of palliative care -

and I WISH us all health and happiness as long as our lungs hold air and our hearts are beating!!

Mary Ann

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

Good early morning to you,

Now wait. Did you read the part about us all getting together and finding a way to get out of this fix--ALIVE. It only hasn't worked for those that only went the standard route, and we both know neither of us are standard by any means. I believe there is hope, we just have to find it ourselves. Keep looking.

I was just looking at the current painting I have on here and thinking that it feels like i felt when I was told I had cancer. All alone in a place with no doors or windows. I added it to the gallery. I feel it now, in a different way then when I painted it originally.

Love you and I do believe we'll get out of this if we don't delude ourselves into thinking that will happen if we ONLY do what we're told to do. FIGHT ON LOVELY LADY! FIGHT ON!

Claudia

and I haven't even had coffee yet. YIKES!

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

I'm in for the duration .... we need to fight and BELIEVE in the POSSIBILITIES!!!!

Love ya' too! Stay warm up in them there parts!!! Mary Ann

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha all
as Mary Ann stated "I'm not surprised"; I knew going in this was all a BIG IF.....;
we all second guess the onc/gyno (if we're lucky to have a specialist) I never felt I was lied to but just that some info was held in reserve; I get answers when I ask the RIGHT questions; it's all about relationship at this stage; trust is hard to build when there is so much anxiety; but I'm straight with him...I need to know what you know so I can make a reasonably intelligent decision about MY LIFE; when people ask me if I'm cured; I laugh and respond that's a "God question" to which I don't have the answer... here's what I know... UPSC is a nasty beast; the recurrence rate is high, 43% on average (all the stages together); if there's a recurrence...length of survival(LOS) becomes a crap shoot, BUT it can be controlled somewhat; I have a former patient who was diagnosed with ovarian cancer with metastasis EVERYWHERE 6 years ago; she's still alive; at one point in her care, we were prepared for an emergency bleed out from tumors around her neck; you could see the tumors' blood supply pulsing; she refused to give up and went looking for alternatives; a Calif onco in San Francisco said let's do some radiation..what do we have to loose; it worked; so sistas be prepared to COLLABORATE with the drs; cause frankly they only know so much...in the mean time dance, dance, dance...I'm singing lots in the car as well
love to all
Marie

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

Sorry

positivenergy
Posts: 6
Joined: Oct 2009

Hi Linda, you are right! Unfortunately, my parents refused to listen to me regarding moleculor diagnosis (because 3 doctors we discussed it with all said they did not have good results with it). When my mothers UPSC came back a year later in her liver in multiple tumors we should have spent the money and had a test of the new tissue, more information never hurts!! I highly recommend anyone reading this to spend the 5k and have your tissue tested!!!

My mother just had radioembolization to one side of the liver about two weeks ago and they now have her on a new chemo and she is very weak. her legs have now become swollen and we discovered last week she had a blood clot so we spent 5 days in the hospital with blood thinner and they did a surgery to prevent blood clots to the lungs.

She is home now and very weak with swollen legs/feet and she has to give herself a shot every day to prevent blood clots. the doctors have her on a new chemo called DEXATOL - DOES ANYONE KNOW ANTHING ABOUT THIS CHEMO? and they are going to postpone AVISTAN since it can cause blood clots and do a second RADIOEMBOLIZATION to the other side of her liver in 2 weeks. After the second procedure they will test her and may begin the avistan.

Her biggest problems now are SWOLLEN FEET, CONSTIPATION, BURNING IN HER STOMACH WITH CERTAIN FOODS.
ANY RECOMENDATIONS MUCH APPRECIATED!!!!

you can email me at denise@glassbeadcollective.org (best way to reach me by email)

All my love and prayers and thoughts to all of you on this site. Please remain positive and enjoy every moment you have, all my love.

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

Is it possible there is another spelling or a generic name or a latin name.

sorry I don't find anything.

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

Over 60% of those with UPSC are EGFR-positive and thus have chemo-resistance from Day One. Because of that, I have saved this tidbit in my files since January of LAST year, and post it again to drive home Claudia's point in the email above:

Findings presented at the 41st Annual Meeting of the European Society for Clinical Investigation in Uppsala, Sweden, April 18, 2007, concluded that "functional profiling" with cell culture assays is relevant for the study of both "conventional" and "targeted" anti-neoplastic drug agents (anti-tumor and anti-angiogenic activity of Iressa, Tarceva, Sutent, Nexavar, and Avastin in primary cultures of "fresh" human tumors).

Cell Culture Assays with "cell-death" endpoints can show disease-specific drug activity, are useful clinical and research tools for "conventional" and "targeted" drugs, and provide unique information complementary to that provided by "molecular" tests. There have been more than 25 peer-reviewed publications showing significant correlations between cell-death assay results and patient response and survival.

Many patients are treated not only with a "targeted" therapy drug like Tarceva, Avastin, or Iressa, but with a combination of chemotherapy drugs. Therefore, existing DNA or RNA sequences or expression of individual proteins often examine only one component of a much larger, interactive process. The oncologist might need to administer several chemotherapy drugs at varying doses because tumor cells express survival factors with a wide degree of individual cell variability.

There is a tactic of using biopsied cells to predict which cancer treatments will work best for the patient, by taking pieces of live "fresh" tumor tissue, applying different chemotherapy treatments to it, and examining the results to see which drug or combination of drugs does the best job killing the tumor cells. A cell culture assay test with "functional profiling," using a cell-death endpoint, can help see what treatments will not have the best opportunity of being successful (resistant) and identify drugs that have the best opportunity of being successful (sensitive).

"Functional profiling" measures the response of the tumor cells to drug exposure. Following this exposure, they measure both cell metabolism and cell morphology. The integrated effect of the drugs on the whole cell, resulting in a cellular response to the drug, measuring the interaction of the entire genome. No matter which genes are being affected, "functional profiling" is measuring them through the surrogate of measuring if the cell is alive or dead.

For example, the epidermal growth factor receptor (EGFR) is a protein on the surface of a cell. EGFR-inhibiting drugs certainly do target specific genes, but even knowing what genes the drugs target doesn't tell you the whole story. Both Iressa and Tarceva target EGFR protein-tyrosine kinases. But all the EGFR mutation or amplificaton studies can tell us is whether or not the cells are potentially susceptible to this mechanism of attack. They don't tell you if Iressa is better or worse than Tarceva or other drugs which may target this. There are differences. The drugs have to get inside the cells in order to target anything. So, in different tumors, either Iressa or Tarceva might get in better or worse than the other. And the drugs may also be inactivated at different rates, also contributing to sensitivity versus resistance.

As an example of this testing, researchers have tested how well a pancreatic cancer patient can be treated successfully with a combination of drugs commonly used to fight lung, pancreatic, breast, and colorectal cancers. The pre-test can report prospectively to a physician specifically which chemotherapy agent would benefit a cancer patient. Drug sensitivity profiles differ significantly among cancer patients even when diagnosed with the same cancer.

The "functional profiling" technique makes the statistically significant association between prospectively reported test results and patient survival. It can correlate test results that are obtained in the lab and reported to physicians prior to patient treatment, with significantly longer or shorter overall patient survival depending upon whether the drug was found to be effective or ineffective at killing the patient's tumor cells in the laboratory.

This could help solve the problem of knowing which patients can tolerate costly new treatments and their harmful side effects. These "smart" drugs are a really exciting element of cancer medicine, but do not work for everyone, and a test to determine the efficacy of these drugs in a patient could be the first crucial step in personalizing treatment to the individual.

Author/Speaker/Performer :Larry Weisenthal, M.D., Ph.D.; Contact information: phone: (714) 596-2100. Link: http://weisenthal.org/Weisenthal_ESCIa.pdf Source : Eur J Clin Invest 37 (suppl. 1):60, 2007

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