UPSC reoccurrence

2

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    unknown said:

    This comment has been removed by the Moderator

    I always thought that UPSC was FAST-growing and aggressive.
    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.
  • california_artist
    california_artist Member Posts: 816 Member
    Aggressive vs Growth rate
    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.
  • This comment has been removed by the Moderator
  • Fran60
    Fran60 Member Posts: 19
    deanna14 said:

    Fran60
    Just wondering how your 2nd opinion went from UC Davis?

    2nd opinion
    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
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  • kansasgal
    kansasgal Member Posts: 122 Member
    unknown said:

    This comment has been removed by the Moderator

    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.
  • deanna14
    deanna14 Member Posts: 732
    Fran60 said:

    2nd opinion
    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

    Big hugs...
    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
  • Mimi25
    Mimi25 Member Posts: 13
    nancylego said:

    Thanks, Mimi for the info.
    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.

    After weeks of waiting for
    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
    nancylego Member Posts: 17
    Mimi25 said:

    After weeks of waiting for
    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

    Wish you all the best, Mimi
    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
    Ro10 Member Posts: 1,561 Member
    nancylego said:

    Wish you all the best, Mimi
    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

    Sorry to hear about your Mom
    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.
  • positivenergy
    positivenergy Member Posts: 6
    Mimi25 said:

    target treatments for PS cancer
    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

    Molecular testing
    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
    Mimi25 Member Posts: 13

    Molecular testing
    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?

    Positivenergy/Molecular Testing
    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
  • Mimi25
    Mimi25 Member Posts: 13
    daisy366 said:

    Thanks for the info, Mimi.
    I

    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

    daisy366
    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
  • california_artist
    california_artist Member Posts: 816 Member
    Mimi25 said:

    Positivenergy/Molecular Testing
    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

    Mimi
    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
  • Mimi25 said:

    Positivenergy/Molecular Testing
    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

    This comment has been removed by the Moderator
  • Mimi25
    Mimi25 Member Posts: 13
    unknown said:

    This comment has been removed by the Moderator

    Crystaledges/CT scans, etc
    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
  • Mimi25 said:

    Crystaledges/CT scans, etc
    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

    This comment has been removed by the Moderator
  • positivenergy
    positivenergy Member Posts: 6
    Mimi25 said:

    Positivenergy/Molecular Testing
    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

    Avistan
    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.
  • gdpawel
    gdpawel Member Posts: 523 Member
    daisy366 said:

    Funtional profile?
    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

    Functional Tumor Cell Profiling
    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
    daisy366 Member Posts: 1,458 Member
    gdpawel said:

    Functional Tumor Cell Profiling
    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/

    gdpawel
    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