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UPSC reoccurrence

nancylego
Posts: 17
Joined: Jul 2009

Hello all,
My mom was diagnosed with UPSC and she finished her last carbo/ taxol chemo treatment on 03/09. She was told NED after 6 treatments. Her CA125 was 9 and she had pet scan. Today, we found out that her CA125 jumped to 1000 and the doctor assured us that her cancer recurred. She will have her scan done next week.
We are very shocked that the reoccurrence happened quickly in 4 months.
Does anyone advise other type of chemo treatment for this cancer?
Please help!

deanna14
Posts: 743
Joined: Oct 2008

I too have UPSC. I finished chemo on June 10, my scan on July 1 showed a possible reoccurance in 2 lymph nodes. I am waiting to hear results of a biopsy. I don't know yet what treatment the doctor will recommend if it is a reoccurance. I too was shocked that it was a possiblity only 3 weeks after my last treatment.
Hang in there and keep fighting this. May God bless you and your mother.
Hugs and prayers!

Fran60's picture
Fran60
Posts: 24
Joined: May 2009

I truly have a hard time navegating in this discussion board, but maybe I have figured out how to comment now.

I have a reoccurance of UPSC and I have received my 3rd round of taxol/carboplatinum. I get the feeling there is no other treatment. It is in my lungs now and I have a constant discomfort when wearing my bra which must be related somehow. I would give anything if the Drs. and medical world had a better prognosis for this. I am always looking for more positive information. I am going to UC Davis for a 2nd opinion next Tues 7/21, but not really believing I will learn that much. I am always open to any info you might have and my heart goes out to you who are dealing with this or any other kind of cancer. I am praying our God has a mighty hand over these Drs. and how they treat us.

deanna14
Posts: 743
Joined: Oct 2008

Just wondering how your 2nd opinion went from UC Davis?

Fran60's picture
Fran60
Posts: 24
Joined: May 2009

I can't say that I learned a lot from the 2nd opinon. It was with a dr at the UC Davis Cancer center. He was very nice and informed me right away that there is not a cure for a reoccurrence of UPSC. He said there are a lot of chemo drugs though and if one doesn't work they will try another. I am a fighter and try not to take the not cureable as a fact. I have had 5 chemo treatments and they are really wearing me down. I had a ct scan after the 4th and the chemo is working so that is a releaf. Its very depressing to hear that some have went through the treatments got a clean ct scan and then its back within just weeks. I know I can only take so much chemo, we need a cure for this awful kind of cancer.

God bless you and I hope you are doing well.

Frances
dfkaler@comcast.net

deanna14
Posts: 743
Joined: Oct 2008

I am sorry that the 2nd opinion was so discouraging. Just remember that they are giving you statistics and that you are not a statistic. Try to keep a positive attitude... the doctors are knowledgable, but they don't know everything! Keep your eyes and faith on the Lord as he is the great physician.
I agree that we need a cure for this cancer.
Take care of yourself.
God Bless you!
Deanna

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

Wow - what a shock. I finished my chemo just a month before your mother!!!

I'd check with your onc to find out if a functional profile was done of the tissue. This tells what chemo the cancer responds to.

I hope the CA125 is wrong!!!! and the scan tells a different story. I will pray for your mother and you. My best wishes,

Mary Ann

Mimi25
Posts: 13
Joined: Jul 2009

Mary Ann/Daisy: Looks like we are both in SW FL. I'm in Ft Myers and would love to connect in person.
Mimi

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

Mimi, let's connect! email me at tturfman@comcast.net

gdpawel's picture
gdpawel
Posts: 538
Joined: May 2001

Differences Between Molecular Profiling and Functional Tumor Cell Profiling

Just to give you some of the major differences between molecular profiling and tumor cell functional profiling. The endpoints of molecular profiling are gene expression. The endpoints of tumor cell functional profiling are expression of cell death (both tumor cell death and tumor associated endothelial [capillary] cell death).

There hasn't been any progress in "drug selection" through the use of molecular profiling.

http://theoncologist.alphamedpress.org/cgi/content/full/12/3/301

However, the has been progress in "drug selection" through the use of cell-based functional profiling. Genomics (molecular profiling) is far too limited in scope to encompass the vagaries and complexities of human cancer biology when it comes to "drug selection." Efforts to administer targeted therapies in randomly selected patients often result in low response rates at significant toxicity and cost.

While researchers continue to develop molecular probes to select candidates, the cell culture analysis platform serves as a functional profile capable of examining the nuances of cellular response to drugs. To exploit the full potential of targeted anticancer therapies, physicians will need laboratory tests that match patients to specific drugs.

Cell culture assays are able to accurately predict how an individual patient's cancer cells will respond to an array of drug combinations. It is able to quantify synergistic drug combinations and individually tailor treatment.

Molecular profiling tests cannot do this. These are the reasons.

In chemotherapy selection, molecular profiling examines a single process within the cell or a relatively small number of processes. The aim is to tell if there is a theoretical predisposition to drug response.

Functional profiling examines not only for the presence of the molecular profile but also for their functionality, for their interaction with other genes, proteins, and processes occurring within the cell, and for their response to anti-cancer drugs.

The goal of molecular testing is to look for patterns of normal and abnormal gene expression which could suggest that certain proteins might or might not be produced within a cell. However, just because a gene is present, it does not mean that an associated protein has been produced.

Protein testing goes one step further by testing to see if the relevant protein actually has been produced. However, even Protein testing cannot tell us if a protein is functional or how it will interact with other proteins in the presence of anti-cancer drugs.

Gene and protein testing involve the use of dead, formaldehyde preserved cells that are never exposed to chemotherapy drugs. Gene and protein tests cannot tells us anything about uptake of a certain drug into the cell or if the drug will be excluded before it can act or what changes will take place within the cell if the drug successfully enters the cell.

Gene and protein tests cannot discriminate among the activities of different drugs within the same class. Instead, gene and protein tests assume that all drugs within a class will produce precisely the same effect, even though from clinical experience, this is not the case. Nor can gene and protein tests tell us anything about drug combinations.

Functional tumor cell profiling tests living cancer cells. It assesses the net result of all cellular processes, including interactions, occurring in real time when cancer cells actually are exposed to specific anti-cancer drugs. It can discriminate differing anti-tumor effects of different drugs within the same class. It can also identify synergies in drug combinations.

Gene and protein tests are better suited for ruling out "inactive" drugs than for identifying "active" drugs. When considering a cancer drug which is believed to act only upon cancer cells that have a specific genetic defect, it is useful to know if a patient's cancer cells do or do not have precisely that defect.

Although presence of a targeted defect does not necessarily mean that a drug will be effective, absence of the targeted defect may rule out use of the drug. Of course, this assumes that the mechanism of drug activity is known beyond any doubt, which is not always the case.

Although gene and protein testing currently are limited in their reliability as clinical tools, the tests can be important in research settings such as in helping to identify rational targets for development of new anti-cancer drugs.

As you can see, just selecting the right test to perform in the right situation is a very important step on the road to personalizing cancer therapy.

Literature Citation:

Functional profiling with cell culture-based assays for kinase and anti-angiogenic agents Eur J Clin Invest 37 (suppl. 1):60, 2007

Functional Profiling of Human Tumors in Primary Culture: A Platform for Drug Discovery and Therapy Selection (AACR: Apr 2008-AB-1546)

Here is an extensive listing for some of the reputable laboratories providing cell culture testing. These labs will provide you and your physician with in depth information and research on the testing they provide:

The first laboratory provides a "cell growth" assay. The assay is excellent at identifying drugs most likely "not" to work (drug resistance). The assay is not as good at identifying drugs which are "more likely" to work (drug sensitivity) or to identify the disease-specific activity patterns of new targeted drugs. Used for drug de-selection and not for drug selection.

Exiqon (formally Oncotech, Inc.)
http://www.exiqon.com/dx

All the below laboratories provide a "cell death" assay. At one time, the goal of cancer treatment was to inhibit unregulated cell "growth." In the last twenty years, the goal is to induce cell "death" in order to successfully conquer concer. The much older "cell-growth" assays measure a drug's ability to inhibit cell "growth" and only succeeds in eliminating drugs that would "not" work for a patient (drug resistance). The more modern "cell-death" assays measure the ability of chemotherapy drugs to induce cell "death" (apoptosis) in a tumor biopsy from a patient (drug sensitivity). The assays are excellent at identifying drugs most likely "not" to work and identify drugs which are "more likely" to work.

Anticancer, Inc., San Diego, CA.
http://www.anticancer.com/

Cancer Therapeutics, Inc., Thomasville, GA.
http://www.cancer-therapeutics.com/

DiaTech Oncology, Brentwood, TN.
http://diatech-oncology.com/

Genomic Health, Inc. Redwood City, CA.
http://www.genomichealth.com/OncotypeDX/Index.aspx

Genoptix, Inc., San Diego, CA
http://www.genoptix.com/

Precision Therapeutics, Pittsburgh, PA.
http://www.precisiontherapeutics.com/

The two laboratories below, in addition to providing a "cell death" assay, provide a functional profiling assay which is the only testing that involves direct visualization of the cancer cells at endpoint. This allows for accurate assessment of drug activity, discriminates tumor from non-tumor cells, and provides a permanent archival record, which improves quality, serves as control, and assesses dose response in vitro (includes newly-emergent drug combinations). These two assay labs have about the most extensive information about the technology with knowledge spanning decades, utilize functional tumor cell profiling. Besides identifying drugs most likely "not" to work (drug resistance) and identify drugs which are "more likely" to work (drug sensitivity), these assays can identify the disease-specific activity patterns of new targeted drugs.

Rational Therapeutics Institute, Long Beach, CA.
http://www.rational-t.com/patients/extra.aspx

Weisenthal Cancer Group, Huntington Beach, CA.
http://weisenthalcancer.com/

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

You obviously are an expert in this field. Thank you for the wealth of information. I only understood a small percent of it.

Fortunately I did have a functional profile from one of the labs you mentioned. I'm grateful that my doctor did this for me. I also had molecular testing done later (HER testing). Hopefully all of this information will contribute to the best testing for patients. I wonder why some docs do this and others don't. Do you have an answer for that???

PS. It was hard to find your posting since it was in the middle of this thread. But I'm glad I did.

Mary Ann

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

thank you for the valuable information. You have so much knowledge and I suspect you are in the field. Thank you; we struggle so to understand this and make good decisions. Thank you for helping me.

Diane

woofgang's picture
woofgang
Posts: 12
Joined: Apr 2009

Thank you for such a detailed explanation. With my original surgery for UCPS, the doctor sent a sample to Precision Therapeutics. The results showed that the 9 single chemo drugs and 3 combinations of drugs tested were all non responsive to my tumors. I was treated with 6 rounds of taxol/carboplatin anyway, since this is the gold standard. But in less than 9 months, I have a recurrence in both my left and right lungs. I just had the 2 tumors in the left lung removed and expect to have the one in the right lung removed as soon as I'm healed from the first surgery. But the oncologist also wants to try a different chemo. Given the results from Precision Therapeutics, why would we expect any of these previously tested chemo drugs to work? Is it possible my tumors are simply chemo resistant?

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

Good questions for your docs. They also used Precision Therapeutics for my assay. I'm also dealing with recurrence of UPSC. Did they do assay on your lung tumors - was this recurrence of uterine or a new cancer? Keep us posted. I advise you get your brain scanned too.

Best wishes. Mary Ann

woofgang's picture
woofgang
Posts: 12
Joined: Apr 2009

Hi, Mary Ann,

The pathology report showed the lung tumors are a recurrence of the clear cell/pap. serous. We asked for the assay to be done if there was enought tissue to send off in addition to doing the path. report - I'll find out the 16th when I see the surgeon. The 2 tumors were really tiny - the largest was only 6 mm. They also did a brain MRI the day of my lung surgery, and thankfully, found nothing. I see my gyn onc the 18th and will get a second opinion from MD Anderson (date tbd). Will definitely report on what we find. How are you doing with your recurrence?

All the best,
Sharon

Mimi25
Posts: 13
Joined: Jul 2009

I originally found a group of ladies discussing UPS on this site and joined in order to be a part of this group. For some reason, I have not been allowed to be a part of them.
If any of you are still having discussions, please let me know.

I, also, have recurrent PS after 6 sessions of taxol/carboplatin. As I did research, I decided that one of the new targeted therapies was the way to go. Fortunately, that was the first thing my doctor suggested and is now about to do a laproscopic surgery to obtain new specimens to send to a lab in AZ for MOLECULAR TESTING. Even with all my research and calling various top hospitals, NO ONE told me there was the ability to do this!!!!
I am hoping that one of the new targeted therapies will keep my cancer at bay long enough for even newer therapies! Strides are being made daily and I intend to fight as long as I am able.

Is anyone out there in treatment with any of the new therapies...ie sunitinib, VEGF trap, Gleeec, etc.

Good luck to us all and keep fighting!

Mimi25

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

Many of the people who regularly post have UPSC. I am one of them.

I'm interested in your experience of recurrence. How many recurrences have you had - what happened and when? Have you checked out any clinical trials??

I have stage 3a and completed my initial treatment (6 rounds of carbo/taxol) in Feb 09. My dr. is not recommending radiation for several reasons and I am comfortable with this. I am in surveillance - my CA125 will be checked every 2 months.

They are doing HER2 testing on my tissue now - in case I will need this info for additional treatment in the future. What type of molecular testing will they be doing? I am not familiar with the new therapies you mentioned. I am interested to learn more if you can direct me to any research or articles.

Thanks for any info you can provide. Best wishes to you.

Mary Ann aka Daisy

positivenergy
Posts: 6
Joined: Oct 2009

Hi Mimi,

My mother was diagnosed with UPSC in May 2008, immediately had a total hysterectomy and 6 rounds of chemo, Carboplatin 1hr, Paclitaxel 3 hrs, every 3 weeks for 6 treatments . In June 2009, after feeling pains on her side, we discovered the cancer came back in the form of multiple tumors in her liver. She immedately began a second round of chemo, Carboplatin 50mg & Doxorubicin 10mg, from June-Oct 2009 until her blood levels shot around the 5th treatment. Just before the 6th treatment, the doctor took an mri and discovered the tumors were growing again and that the cancer had become immune to the chemo. A few weeks ago we saw a top liver specialist who said surgery was not an option but recommended RadioEmbolization SIR (selected Interanl Radiation) Spheres, which does not cure the cacer but can shrink the tumors and prevent further growth. She just did the mock procedure today and if successful, she will have the procedure done next week around thanksgiving.

I heard abt carisdx.com molecular testing from a friend who is a doctor. My mother's oncologist and liver specialist were not quick to agree to it since there is no proof the testing is accurate. They did however say they could arrange to take tissue under cat scan during her RadioEmbolization Procedure. However, they said I would have to arrange the shipment of the sample tissue to caris. Did you do this? How do i arrange? She is suppose to have the RadioEmbolization done next week or the week after so I do nt have mch time to arrange. My mother is not open to having it done but I think she should do it. More information is a good thing. Any suggestions?

Mimi25
Posts: 13
Joined: Jul 2009

Dear positivenergy:
Thank goodness someone sent me your e-mail, because I'm not notified any more about postings. Also, I can't seem to pull up the UPSC members. I just hope you receive this...let me know.
As to the doctors not wanting to test your mother's tumors and leaving it up to you. I think that is terrible. My doctor thinks clinical trials are terrible because they DON'T
test before hand and that wastes money and the patients connecting with the best possible treatment for THEM.
I don't know how you could possibly send the tissues correctly. I would IMMEDIATELY call the TWO labs....both CarisDx for their "Target Now" testing (testing for the new targeted drugs) AND Oncotech (testing for standard chemo drugs) and ask them what you would have to do to safely have the tissue sent to them. If it weren't for the testing, I wouldn't be doing as well as I am now.
My tumors were originally tested by Oncotech and I went through the standard Taxol/Carbo rounds (my tumors were not terribly responsive, but those two gave me the best chance).
Upon recurrence, my tumors were retested (as tumors mutate) by Oncotech and CarisDx.
Unfortunately, I was now resistant to all standard chemos, including both carbo and gemzar. However, the tests showed that the combination of carbo and gemzar put them into the 50/50 range and was my best chance (what I am on now). The CarisDx testing showed that I did not have any of the markers which are needed for the new targeted drugs...with the exception of the VEGF marker. After considerable work on the part of my husband and my doctor and his nurse, we were able to have Avastin added (which targets VEGF). As Gemzar knocks blood counts WAY down, my doctor chose to start with only a half dose of Gemzar. After one round (2 sessions) of the half dose Gemzar and normal amt of Carbo, he upped the dose another 30%....my CA125 immediately fell almost 50%. The Avastin was then added and after another round (2 sessions) of Gem/Carbo/Avastin, my counts have fallen another 50%...from the original 84 to 29!! I am only half way through and hope to have continued success.
I wish you the best and hope that your doctors will be more responsive to the testing.
Please let me know if you receive this and what you end up doing.
Mimi

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

Delighted to hear that treatment is effecting a wonderfully hopeful response. It's great that you were able to get the best treatment for your current situation. Often things are just knee jerk responses from doctors who feel helpless to effectively treat you. This is really inspiring news for the others here who are recurring.

In finding the board with the UPSC thread members. The easiest way is to go to the Discussion Boards on the left side, click on it, and at the bottom of the first section is the Uterine Board. We're all here. Some are posting less frequently as they are in remission or cured. I think most of us read fairly often and respond as needed.

My heart out to you in your happiness,

Claudia

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Mimi25
Posts: 13
Joined: Jul 2009

Hi Patricia:
I've had optimal debulking and then just a lapro to remove the largest tumors in my abdomen for testing (when it recurred). As I have hundreds of tumors and lots of scar tissue now, my doctor says he cannot debulk at this point. My doctor does a PET scan approximately every six months. I hope to have another one in Jan (after I've had 6 treatments with Avastin) to see if the uptake has lessened. From what I understand, the Gemzar/Carbo basically keeps me maintained (no additional growth). The Avastin is the one that is supposed to kill the tumors by attacking the blood supply to them. Each one of us responds so differently that I feel it is very important to have our tumors tested. New drugs are coming out constantly and one of them may be the very one right for one of us.
If the Avastin is indeed working, I hope to continue with that on a maintenance regimen.
Some of the clinical trials are continuing using just the Avastin as a follow-up maintenance and some people are using Avastin with another standard chemo as a follow-up.
I'm trying to find out whether the Avastin works better with another chemo or not.
Good luck to us all in finding our own right path.
Mimi

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positivenergy
Posts: 6
Joined: Oct 2009

Thank you Mimi for the information.

where are you being treated?

My mother is in NY and we also just received approval for Avistan and she will start it the week after thanksgiving! On tuesday, next week, she will have a radioembolization treatment (a process using nuclear medicine to selectively reduce tumors in her liver by blocking blood flow to the tumors). She also started Tobotikan this week and continue weekly doses along with the Avistan which they will give her every three weeks.

My parents have decided not to do the Caris testing with Target Now. They believe we are with the best doctors in New York and want to leave it up to the team we are workigng with to decide. However, I thank you for your tips and am most appreciative. Its great to know you found Avistan too and had it approved as well. I have you in my thoughts and please feel free to contact me if i can answer any questions you may have.

with warm wishes for thanksgiving holiday, positvenergy.

nancylego
Posts: 17
Joined: Jul 2009

Thank you so much for sharing your experiences. It means a lot to talk to other people who are going through same difficult journeys. Like Mary Ann, my mom was stage 3 when she was first dx. Her cancer responded well when took carbo/ taxol. The CA125 normalized after the second treatment. It is just the fast recurrence (in 4 months) that was hard to believe. She did not take radiation too. Her doctor and all the other doctors with second opinion said no.
Her doctor suggested another combination of chemo for this recurrence. But she is very reluctant to take another chemo b/c she still is suffering with past chemo side effects. Her major complain is neuropathy.

Mimi, so we are very interested to find out about the new therapies. Please direct us to your new findings and researches. My mom's doctor did not mention that. Are the therapies you mentioned molecular or hormonal therapies? Where can we get detail?

Thank you and God Bless

Mimi25
Posts: 13
Joined: Jul 2009

Wow! Such fast responses. I'm glad I can help.

I subscribe to the magazine "Cure", which I originally found in my doctor's office. It has been a wonderful source of information. Every so often, they publish a Special Issue.
The last one I received was in 2008, which had fantastic information, including a terrific article on the new targeted therapies. Go online to www.curetoday.com to see back issues. To subscribe, 1-800-210-cure.

The article in the special edition was called "Cancer Therapy's Many Targets, pp24-27. BUT, there is so much more information, too. The targeted drugs are listed in various categories: Angiogenesis inhibitors (2 of which have clinical trials for recurrent endometrial CA. Sutent (sunitinib) and VEGF Trap (aflibercept), which JUST closed this week. The problem with clinical trials is that most of them are for ovarian cancer. Although my PS has been treated as though it is ovarian, I am not eligible for those trials. The other problem with them is that you have to live in the area of the trials)
Some of the other categories are mTOR inhibitors (haven't found trials for these), HER family inhibitors, and others. Some of these are infusion drugs and some pills. As they are targeted, the side effects shouldn't be as bad as regular chemotherapy.

In answer to one of you, I, too, had neuropathy by the time I finished my 6 treatments.
When I was able, I started doing some really intensive walking. I don't know if that is what did it or enough time had passed, but after 8 months, my neuropathy was GONE!!!

I can't answer all of your questions about the molecular testing yet, as mine has not been done. I was originally tested with the Oncogene tests, which gave my doctor a good profile of my cancer. However, as cancer mutates with the use of chemo, he is now going to take samples of my new "spots" for the molecular testing. This will be done on the 30th and should take about 10 days for the results to come back. I will get a copy of the report and will relay the name and place of the lab to you all.

My doctor had originally told me that if my cancer came back within the first few years it would mean that my CA was resistant to chemo. As he now said I should be tested for the targeted drugs, I agreed that was the best course at this point. The drugs are still too new for statistical analysis, I don't know how successful they have been. However, as a few of them are in Phase II, that may mean that there HAS been at least some initial success.

I don't remember what some of the other questions were, but hope this answers most and is of some help. I hope that someone else who has taken/is taking one of these drugs will repond with her experience.

Take care, Mimi

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

Thanks for the info, Mimi.

I will check out that article in The Cure - I am a recent subscriber. It has great info in it. My neuropathy is gradually lessening with time - I'm also walking and taking B12.

Keep us posted on your testing.

Mary Ann

Mimi25
Posts: 13
Joined: Jul 2009

MA:
Thanks so much for forwarding the query to me. I don't know why I have such difficulty with this site. They no longer notify me of any responses and, if I do pull it up, can never seem to see anything current. Although I did see the one you told me about, which is current. Has everyone moved to another site. I found another message to me on another site (which I was never notified of), but couldn't find the UPSC members and am not sure which site it is...person said the last "uterine CA" board....but, as there are so many pages, I don't know which one it is. Why isn't the UPSC listed as one of the boards?????
Mimi25

nancylego
Posts: 17
Joined: Jul 2009

Thank you Mimi for all the detail. It is very helpful. Please also post your test result. Are you taking any treatments right now for your recurrence while they are doing the test?
Also, have your doctor decided which targeted therapy you will get or will that be determined after the test result?

Mimi25
Posts: 13
Joined: Jul 2009

I am not currently taking anything. The PET scans were taken end of June and I should be back into some type of chemo (targeted or not) by the middle of Aug. My biopsy is scheduled for next week and then it will take about 10 days for the report to come back.
I am praying that it shows my cancer is susceptible to one or more of the new targeted drugs.
Mimi

bonniesue
Posts: 126
Joined: Apr 2009

Mimi, my thoughts and prayers are with you.

Mimi25
Posts: 13
Joined: Jul 2009

Mimi here again. My surgery went well and I am now waiting for my reports. I will have my new tumors retested by Oncotech. After chemo, the cancer mutates and the doctor wants to see what, if any, differences there are now.
In addition, they will undergo molecular testing to see if certain markers are "overexpressed". This will lead them to particular targeted drugs which may work for MY tumors (drugs such as Avastin, Sutent, etc)
As soon as I receive the report, I will forward the name of the lab. All I know is that it is in AZ.
My original testing was done by Oncotech, Tustin, CA, 1-800-662-6832, and was called
"Prognostic and Predictive Marker Report". It tested for DNA (ploidy and Index) and S-phase fraction, in addition to HER2, Estrogen receptor, Progesterone Receptor, p53 Gene Product and Angiogenesis/CD31. A Drug Resistance Assay was also done at the same facility.
In addition, my cancer was originally tested by Precision Therapeutics in Pittsburgh, PA,
1-800-547-6165. This test was a "ChemoFx Assay". It showed whether my tumors were
responsive or non-responsive to a medly of regular (not targeted) chemo drugs...taxol, carboplatin, etc. This was similar to the Drug Resistance Assay done by Oncotech.
In 2 weeks I should have my new information, along with my doctor's recommendation on the way to go at this point. I will forward it, as soon as I know.
Take care, Mimi

Mimi25
Posts: 13
Joined: Jul 2009

I just received the following information:

Caris Dx of Phoenix, AZ, tel: 1-800-901-5177 has a program called "Target Now", www.targetnow.com. I imagine it will give you all the information you need.

This is the facility which is doing the molecular profiling of my tumors.

Good luck, Mimi

nancylego
Posts: 17
Joined: Jul 2009

Thanks, Mimi for the info. We will bring this up to the oncologist. He recommended another drug combo. He did not mention targeted therapies on our prior meetings. We found out that my mom has multiple relapses in her abdomen and pelvis.
I am glad your surgery went well. I hope they will find the best one for you. Please keep us on the loop about your results.

Mimi25
Posts: 13
Joined: Jul 2009

After weeks of waiting for test results and doctor's appointment and approval of first two drugs, I had my first chemo yesterday.
I have started with Gemzar and carboplatin. As I am now platinum resistant (along with resistance to almost everything else), the Gemzar brought the combination up to the medium level between the resistant and non-resistant.
The doctor is working with my insurance to get Avastin added. Despite its side effects and toxicities, I feel this is the best way to go for me at this point.
My doctor also showed me an article, which you can pull up on "PubMed", titled: "Combination gemcitabine, platinum and bevacizumab for the treatment of recurrent ovarian cancer", by Richardson, etc.
80% of the patients were platinum SENSITIVE and I have no way of knowing if any of the platinum resistant patients were among the good results....48% of the patients had COMPLETE RESPONSE! and 30% more had a partial response. An additional 15% had stable disease. As only 6% of patients had progressive disease and 20% were platinum resistant, I have to assume at least some of the good results included the platinum resistant ones.
Those statistics are good enough for me!
It's only day 2, so I don't know what my side effects will be. Will post as I go. The telling moment will be when I have my CA125 tested at the beginning of my 3rd treatment.
My schedule is one week on and one week off for 28 days (considered one round). Length of treatment hoped for is 4 to 6 rounds.
Wish us all luck!
Mimi

nancylego
Posts: 17
Joined: Jul 2009

Good luck with the treatment and the result. My mom started single agent doxrubicin for the recurrent cancer and she has severe vomiting problem since then. She is hospitalized now for this problem. I don't think she can continue with this treatment.
Wish you all the best, again

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Hope they can find the right combination of medicine for your Mom and she does not have to stay in the hospital too long. Wishing you both the best.

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Mimi25
Posts: 13
Joined: Jul 2009

Yes, I have UPSC 3a. Hysterectomy Jan 07, recurrance Apr 08, MAJOR debulking surgery
followed by 6 rounds Taxol/Carboplatin. PET scan end of June 09 found another recurrance.
Just had laproscopic surgery to remove the largest of the tumors for further testing.
Will start another series of chemos soon. Waiting for results of tests to see which may be best for me at this time.
I am lucky to be on Medicare, along with BCBS supplement.
Take care,
Mimi

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

Patricia: I sooooo hope that you are right that UPSC is SLOW-growing, but I don't think so. I need to do some more research to be sure. People seem to recur pretty quickly if the chemo they get doesn't work; and yet I've read of women with UPSC who were in remission for over 5 years and then had a recurrence, so I just don't know. Here is something I found that seems to support that UPSC is FAST-growing:

UPSC is aggressive and spreads quickly into the myometrium and the lymphatic system. Thus even in presumed early stages, lymphadenectomy and omentectomy should be included in the surgical approach. If the tumor has spread surgery is cytoreductive followed by radiation therapy and/or chemotherapy.

In a study to determine if adjuvant therapy should be used in patients with stage I UPSC who had undergone surgery, no increased survival was seen when radiation therapy was added versus observation, while the postsurgical treatment with chemotherapy may be beneficiel but more data are needed. A study of the usefullness of platinum-based chemotherapy as an adjuvant after surgery of stage I patients showed that patients with stage 1A who had no residual disease in the hysterectomy specimen had no recurrence regardless if chemotherapy was used or not, however, patients with stage 1A disease with residual disease in the hysterectomy specimen had no recurrence with platinum-based therapy, but those who had no such chemotherapy showed recurrence in 43 %. Similarly, patients with stage 1B disease with chemotherapy had no recurrence, while those without chemotherapy had a high degree (77%) of recurrence.

The antibody Herceptin, which is used to treat breast cancers that overexpress the HER2/neu protein, has been tried with some success in a phase II trial in women with UPSCs that overexpress HER2/neu. (NOTE: In a recent Yale study, about 60% of UPSCs were found to overexpress the protein HER2/neu--the same one that is overexpressed in some breast cancers.)

In the older literature survival rates have been given as 35-50% for Stage I-II and 0-15% for Stage III and IV UPSC. More recently it was reported that forty-two percent of 138 UPSC patients were found disease-free at five years.

Anne Shabar
Posts: 1
Joined: Jan 2010

My surgery was 8 weeks ago. I know that time is a concern to make the following decision.
I have been told that I have stage 1A UPSC and there are different thoughts whether it warrents chemo. Internal radiation is suggested. I am also trying to find the top Doctors in this Country who specialize in this type of cancer. Any info regarding that would be appreciated.

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california_artist
Posts: 865
Joined: Jan 2009

This is my understanding of the two factors. UPSC is considered aggressive because it will spread almost as soon as it develops. This is as you mentioned in the previous post. It is aggressive in it's tendency to metastasise. However, once it gets somewhere new, it can hang around for quite some time before it recurs. That is why you are not considered out of the woods for about four years. It is this tendency to go all over the place that causes our oncologists to treat aggressively, they figure it could be anywhere.

However, due to the quick recurrences of some of the women on this discussion group, I am beginning to wonder if chemo or radiation or the stress of either, does not tend to make it a faster growing cancer. This could be due to the assault on the immune system that those two therapies create. Cancers have a huge adaptibility factor. UPSC is an opportunistic little fellow.

This is just an observation. Somewhere I have the article on the four year recurrence timetable.

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kansasgal
Posts: 122
Joined: Aug 2009

Hi, Patricia.

Fran's update is the 5th post from the top of this thread in response to Deanna's question.

I think of you every day as I wonder if my initial surgery was truly my cure. I will never know the answer if I experience no recurrence.

Hugs to you from Sally.

nancygt
Posts: 86
Joined: Jan 2010

Would like to her how it is going as I am in similar situation. Diagnosed 3A Endometrial PS
11-09, had hsyterrectomy and oopharectomy 12-09 followed by round of carboplatin and taxol, then external radiation, internal radiation and another round of carboplatin and taxol. CA 125 went down t0 9 at end of chemo, rose to 21 at 3 months but now 6 months later, it is up to 179 and I am having PET scan tomorrow (had CT scan and it showed possible enlarged lymph node near liver which is in tricky spot to biopsy so PET scan is first). Like you I am surprised by rise in CA after only 6 months and curious as to what others have experienced.

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lindaprocopio
Posts: 2022
Joined: Oct 2008

I was Stage III-c UPSC, so I always knew it was about 50/50 that my cancer would come back, but it was still devastating to have my CA-125 jump from 11 to 155 when I went for my monitoring checkup. I had a CT-scan next that showed an enlarged lymph node in my pelvis, near an aorta that would make it dangerous to do a needle or surgical biopsy (just like you!) so I had a PET scan next. 3 lymph nodes 'lit up' on the PET, (the pelvic one; a tiny one behind my stomach, and a very bright one in my arm pit). I didn't have any biopsies since the only node that could be safely biopsied in any way was the one in my armpit, and the reasoning was, even if it came back benign, we still wouldn't know about the other 2. So I'd be in chemo either way, based on the spike in CA-125 and the lit-up PET scan. I am getting a weak dose of taxol every week (7 weeks / 7 rounds so far), small enough that I have no side affects accept for being bald again and fatigue as the day wears on. I take Neupogen shots the 3 days following each chemo, so a lot of running over to the clinic. But I still work and go out to eat and have as much fun as I can!

nancygt
Posts: 86
Joined: Jan 2010

Thanks for sharing-i am on pins and needles over PET scan results and perhaps expect recurrence and know that lymph node near the liver may be too tricky to biopsy. I can face chemo again although I was enjoying having hair again. And my doctor has been great trying to schedule tratments so I can do trips etc with my friends- we have 4 day Mexico cruise scheduled for March for 4 of us to celebrate the end of 6 rounds of chemo for my best friend who has stage 4 lung. While she and I compare notes and are both detemined to take this trip, it is very helpful to find other women who are in similar scenarios to comapre notes, learn more and booster spirits.

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Ro10
Posts: 1579
Joined: Jan 2009

I finished my chemo in August 09. I had my surgery 1/09. I started treatment in 1/09 also. I had the sandwich treatment like you did, with 3 chemo then radiation (external and internal), and then 3 more chemo. My CA 125 was 18 before my last chemo in August. My October check-up showed it was up to 39.9. In November it was 55 and in December it was 77.7. My CAT scans have been negative. My onocologist says he does not treat the number, but if the CAT scan shows something. I have been having lab test every 6 weeks, so I will have another one February 9th. The onocologist says that some people level off at 100 - 200. So I am hoping I am leveling off. My stage was III-C UPSC.

I wish you luck with your PET scan results. Keep us posted. In peace and caring.

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daisy366
Posts: 1493
Joined: Mar 2009

I'm confused. If You had surgery in Dec. 2009, What do you mean by 3 months and 6 months?

Maybe I'm reading your post incorrectly. Do you mean 2008?

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