Clinical trials

Jamma
Jamma Member Posts: 7
in Ovarian Cancer #1

Anyone with experience in a clinical trial? I know this is a huge topic,but I didn't know where to start.

My mom has stage 4 ovarian cancer with reoccurrence. Currently, they reccomended hospice only, but if she has good kidney function she could qualify for a clinical trial. That's the hard part. Her kidneys are damaged, the cancer is spread to different places. i mean...is it worse to get your hopes up for the clinical trials? Or is it worse to give up? Are the clinical trials really for helping patients or doing science research? 

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,506 Member
    #2
    Jama, how lucky your mother

    Jama, how lucky your mother is to have such a loving and caring daughter.  I imagine you can try looking for a trial, this site has a tool to help:

    http://www.cancer.org/treatment/treatmentsandsideeffects/clinicaltrials/clinical-trials-matching-service-find-trial

    I don't know if there is anything for your mother but I wish you my prayers.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited July 2016 #3
    Jamma~For IVs~There's a X2 treat & a X2 "retreat"/change course

    Hi "Jamma"

     Welcome to this site, although you didn't post any info on the "about me" page “about your Mom”.  When I first read your letter, questions came to mind.  I am asking from the standpoint of a Stage IV Ovarian Cancer patient that has to make decisions all along the way.  There will come a time when I will personally decide what course to take when treatments are no longer effective, and that could be at any point.  At some point, one has to ask themselves, “When is enough enough?”  There comes a time when a person’s priorities change.  We know that in the advanced stages of Ovarian Cancer, a cure is not possible.  And the treatments that are prescribed are given with the hope of “slowing the growth of the cancer” to give the patient a better quality of life, and hopefully a long period of “progression-free survival” along the way. 

                 So when the treatments are having no positive effect, and I am sacrificing quality of life in the process, I won’t call it “giving up”.  I will say it is a “change of course.  I’m all for “fighting as long as it is affording me some quality of life.”  But when the cancer is depriving me of simple pleasures and doing my body no good, then what good is it to continue?   I’ve said so often before, there’s a time to fight and a time to flee, if you ask me!  I’ve known people that were real fighters but when the cancer kept on spreading, though they were still having treatment after treatment, they said, “Enough is enough!”  They conferenced with their doctors, and decided to go with the services HOSPICE provided.  They said it was a good decision on their part and sang the praises of Hospice.  So I would say if your mom has “fought the good fight” but the cancer is still stronger, then it’s not “giving up.”  It’s wanting to make the most of the rest of her days to be with the ones she loves minus the treatments that are having no good effect.

                 And as for clinical trials, they can be both for the good of the patient, and/or they can also produce no positive results for the patient.  At the same time clinical trials do provide positive research findings.  Clinical trials go through 3 phases, prior to announcing that some certain treatment has proven to have positive effects on the majority of patients, prior to FDA approval.  Moreover, some trials will be “blind” in the sense that some patients will get the “real thing” while others will get the “placebo”.  And no one will know which one they are receiving.  And so clinical trials can be both positive and negative in that regard.  Sometimes new medications are tested and have been shown to produce no increase in survival times or quality of life.  At the conclusion of clinical trials, many prove to show no improvement that would warrant FDA approval. 

                 So if you had given me a bit more history about your mom, I believe I would have felt free to have given a more informative answer.  For instance, I would like to have known such things as:

     When was she first diagnosed, and what was the diagnosis?  Who are the doctors treating her and for how long?  What treatments has she had, and what success, if any, along the way?   Is Mom asking about clinical trials even though you say doctors have recommended HOSPICE, or are you asking for your own information?

     You write:  "Her kidneys are damaged, the cancer is spread to different places. I mean...is it worse to get your hopes up for the clinical trials?  Or is it worse to give up?  Are the clinical trials really for helping patients or doing science research? " 

     So Jamme, allow me to share with you some of my own personal thoughts here.  There will come a time when I will say, “Nothing’s working and I am going to stop treatments.”  Currently there are clinical trials going on in the field of Immunotherapy, but none have yet been approved for Ovarian Cancer patients.  It may not happen in my lifetime and so I’m prepared to take life as it comes.  I’ve made the conscious decision to live and enjoy the day I’ve been given to the best of my God-given ability.  Although I’m not without intermittent pain sometimes in “new places”, I am presently enjoying a good quality of life for a Stage IV patient who started out as having cancer two different places.  (I'm presently dealing with Pleural Effusion.)  I’ve not had the benefit of a cancer-free period since I was first diagnosed.  So recurrence isn’t part of my vocabulary in that regard.  The goal for a Stage IV is not a cure, but rather a long period of “progression-free” survival. m(PFS).   With every CT scan, since my Cytoreductive Surgery in July of 2013, there has been some evidence of a slight progression.  However, the surgery itself was to remove “non-essential” organs to which the cancer could ultimately spread, and that is why I have lived as long as I have with as good a quality of life as I have presently.  First I had neo-adjuvant chemo treatment of Carboplatin/Taxol.  Then CRS--then targeted radiation on Caudate lobe of my Liver in 2014-then another series of chemo treatments from June to Sept. of 2015 with same chemo drugs.  My body will only "stand so much!" 

                 So there comes a time to “give up ineffectual treatments” in a sense—a time to know when nothing is working—a time for a change in priorities—a reassessment of what I want to do with the rest of my remaining days. 

                 Perhaps the article written by MAYO Clinic back in 2006 would be of help in settling your mind about which way Mom should go.  (See reference below)  Knowing all the while, that it would be most presumptuous of another family member or friend to tell Mom when it is time for her stop treatments.  Now if she has trusted her doctors up to this point, then what “they” say should have some bearing on her future decisions.  As long as the patient is coherent and in their right mind, they should be the ones to make the decision as to how much more they want to suffer.  Am I to assume that you are just asking for your own peace of mind, or is Mom undecided?

                 As for me, I liken myself to the old Kenny Rogers song, The Gambler.  Part of the words are, “You gotta’ know when to hold ‘em, when to fold ‘em, when to walk away and when to run.”  And my prayer is that God will give me the wisdom to know when it’s time for me to “fold ‘em and when to walk away.”  So far I’m in a “hold ‘em” pattern, but there will come a time for me to “walk away.”  And it may just be that time for your Mom.  In my opinion, “Walking away from more harsh chemo treatments that are not producing anything but more suffering, and opting to seek the great help that Hospice is known to provide, would NOT be giving up!”  It would be a change of priorities—all things considered.

                 Believe me, when I have to make that decision, it will be heart wrenching for me, and for every member of my family.  But we’ve all talked openly about “when the time comes for me to “walk away”—they all know how I feel.  But today is the only day I’m sure of and I’m determined to enjoy it.  That goes for my husband as well.  We never know when he may have a recurrence.  He’s an Esophageal Cancer survivor now in his 14th year.  Talk about “the gambler.”  God has certainly allowed my husband to “beat the odds!”  And each day together is a day we might not have had, so we choose to enjoy the day and each other, and by God’s grace, face whatever comes. 

                 My prayer for both you and your mother would be that she consider all the things she has endured so far, and the progress that has been made or lack thereof.    Then the choice to choose Hospice may be the best decision for her.  So those are my thoughts based on what you have shared with us so far.

     Sincerely Loretta

     Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

    __________________________________________________________

     Here is the letter I wrote referencing the Mayo Clinic article.  Personal comments precede the article.  It details so many considerations about “Stopping Cancer Treatments:  Deciding when the time is right.” So you might want to print it out and share it with others in your family. 

    1. http://csn.cancer.org/node/302908

     “ARE WE NOT ALL GAMBLERS PLAYING IN THE CANCER CASINO HOPING 2 WIN LIFE'S LOTTERY~BUT WHAT IF”

     I often use the old Kenny Rogers’ song, The Gambler,  2.  https://www.youtube.com/watch?v=azZr1cSu9-4 to illustrate the decision that my husband and I both will have to make individually.    We’ve got to pray to “know when to hold ‘em—when to fold ‘em—when to walk away—and when to run!”  It occurs to me that we are all “gamblers” at the table in a “Cancer Casino”.  The stakes are high.  We’re all hoping to win the “Lottery of Life”! ...

     __________________________________________________________________

     STOPPING CANCER TREATMENT: DECIDING WHEN THE TIME IS RIGHT

     Explore what it means to stop your cancer treatment — from what to consider when deciding, to what to expect once cancer treatment ends…”

    _______________________________________________________________________ 

     3.  http://www.cancer.gov/about-cancer/treatment/clinical-trials

     These are web links where one can search for clinical trials sponsored by the National Cancer Institute (NCI). 

    _______________________________________________________________________ 

    4.  http://www.cancerresearchuk.org/about-cancer/type/ovarian-cancer/living/living-with-advanced-or-recurrent-ovarian-cancer

     “…Treatment and symptom control

     Treatment may cure some women with ovarian cancer that is advanced when it is first diagnosed. But for most women with advanced ovarian cancer, or cancer that has come back after treatment, it is not possible to cure it. Even if the cancer can't be cured, treatment can very often shrink it and control it (put it into remission) for quite a while. You will need to talk very carefully to your own specialist to understand

  • Jamma
    Jamma Member Posts: 7
    edited July 2016 #4
    Wow. Thank you so much for

    Wow. Thank you so much for the resources they are very helpful. I guess I was asking for my peace of mind. I Wish she were more open to talking about things, but she's harboring bad feelings. She blames herself and not the doctor for her kidneys being damaged. I just want her to feel peace, and like you said not feel like she's giving up, or have these negative feelings. But now she's feeling so bad every day, I don't want to burden her mind while she is in pain. 

     

    I truly hope the best for you and your husband. Talking is really helping me, so I think I need to encourage her to talk to someone outside the family.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #5
    Jamma said:

    Wow. Thank you so much for

    Wow. Thank you so much for the resources they are very helpful. I guess I was asking for my peace of mind. I Wish she were more open to talking about things, but she's harboring bad feelings. She blames herself and not the doctor for her kidneys being damaged. I just want her to feel peace, and like you said not feel like she's giving up, or have these negative feelings. But now she's feeling so bad every day, I don't want to burden her mind while she is in pain. 

     

    I truly hope the best for you and your husband. Talking is really helping me, so I think I need to encourage her to talk to someone outside the family.

    Jamma~I'll B here 4 U if U need 2 talk~Wish I could talk 2 Mom

    Hello again Jamma,

     If I’ve helped you in any way, that’s a good thing.  Peace of mind is a necessity to cope in the cancer world.   How much you can say to your mother depends a great deal on how well she takes advice from her daughter.

     In my own life, even though I “grew up”, I was, in a sense always my mother’s child, and that’s the way it was till the day she died.  It seems that the older they get, the more they want to “hold on” to their authority role.  That is true even when they actually become dependent on others.  So it just may be that although you want to help your mom, you may not be the one that can reach her.  After all, “what do you know about cancer—right?”  I’m just wondering if there is that “generational gap” no matter your age.  Now don’t get me wrong, I had a loving, generous, self-giving mother, but she was always on the giving end.  It was hard for her to be on the “receiving end” in that she found herself not able to continue to do all the things that she once was able to do. 

     Years ago I sat with a good friend, and an oncology nurse, Lou, who died of Ovarian cancer at age 40.  I remember I would go over days and just sit with her.  Little did I know that many years later, I would be diagnosed with the same cancer.  But as she stood before the mirror, brushing her hair, it was coming out by the brush full.  She sighed, and said, “Death hath no dignity.”  I now understand the emotions that she held inside.  She never exhibited self-pity.  She was most concerned for the 11-year-old adopted daughter that she would be leaving behind.  That carries with it a grief that I can’t enter into because my children are grown now and are all able to care for themselves, and will be even when I’m not here to give them “my two-cents” worth.  And you know one can’t even buy a piece of “penny candy” for two cents now.  Yes, I’m old enough to remember “penny candy” and “dime stores” and soda fountains, sock hops, and juke boxes, and gasoline that costs 17¢ a gallon, and no air conditioning by the way.  And I must say they were just fun times.  Ahh yes!

     Now I must confess that my children are all now in their 50s and I still don’t “cut them much slack” and think that they still “ought to listen to me.”  So I’m always giving “unasked for” and sometimes “unappreciated” advice.  So just how would you propose to get your mother to get out of her self-accusatory shell, and realize that she is in no way responsible for damage to her kidneys?  And with all the treatments, and now a recurrence, I’m not at all surprised that her kidneys now want to “get in on the act.”

      But frankly, I think that if I read you correctly, she is in no physical condition to undergo a rigorous clinical trial.  Moreover, she would have to qualify for one, and if the physicians thought she would benefit by one, surely they would have suggested it.  I think that she needs to know more about the progression of Stage IV Ovarian cancer.  But that can be depressing, if in one’s mind, they will only accept the possibility of a cure. 

     So all I can say for now is, if I can be of any help to you, write me here or send me a private e-mail if you wish.  But I think you can tell by now that I’m not “whistling past the graveyard”, and am very aware that there are “limits” to treatments, especially for one who has progressed to Stage IV.  I’m truly sorry for your mom, but do you think she is open to knowing more about how different stages of Ovarian cancer are treated?  My, my, even the contrast that we drink for those scans can cause kidney damage if we don’t flush out our kidneys with a lot of water, especially for the first 24 hours after the scan.  But I wouldn’t know how to damage my own kidneys if I wanted to, but I have every reason to believe that they will most likely be affected negatively at some point as the cancer continues to move on. 

     So I have two choices, relish the day that I do have, or waste it with worrying about a day way in the future which may or may not ever come.  But it is futile to entertain thoughts of full recovery with nary a trace of cancer, after it has had free range for such a long time.  I wish your mother would actively entertain the choice of Hospice services.  Most times there are “nurse navigators” in each practice.

     Does your mother go to her oncologist often?  If she goes on a regular basis, you could speak to one of them personally and tell them that you would like for them to counsel with your mom, and make her aware of which choices would give her the best quality of life, going forward.  And I do use that word, “quality of life” advisedly.  It goes without saying that a Stage IV Quality of life will be nothing like it was prior to having been diagnosed with this cancer.  But in context, some things would make her feel better, and other will make her feel worse.  And if she is “hell bent” on finding a cure, then she surely will be in deep depression. And likewise, if she “hell bent” on placing blame on herself for something she isn’t guilty of it will be difficult to get her out of it, unless she gets some outside counseling.  That could be from a qualified nurse if you know one that happens to be personally acquainted with your mom, or a nurse navigator, whose aim it is to “walk with a patient” and be there for advice and counseling.  Do her doctor’s know she is blaming herself? 

     Your heart aches for your mother.  And I know you would do anything you could to help her.  Letting her know that you hurt with her, and that you are there for her, if she will open up to you, is the most you can do.  Sometimes cancer patients just plain refuse to be consoled, usually because they have given up hope.  So cherish the days and pray for her, and I will also.

     Love Loretta

    P.S.  I'm assuming you are writing as a "daughter", but there are sons who write here as well, so either way the sentiments are the same. 

     

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