removed from clinical trial, need help

Linn1
Linn1 Member Posts: 47
edited March 2014 in Ovarian Cancer #1
Hi-
I'm currently being removed from a phase 1 clinical trial due to low white blood cell counts, I no longer meet the criteria and neulasta is not helping. I am at a point where I will most likely seek another opinion outside the University of Chicago. Just wondered if anyone knows of the top three hospitals/docs that treat ovarian cancer? I have the phone number for Ovations for the Cure and willcontact that organization Monday. My doctor has suggested Doxil as the next medication, but as long as my wbc is low that may not work either. Wondered if anyone was familiar with the Sidney Kimmel Cancer Center at Johns Hopkins and if so, what they thought.
Thanks,
Lynn

Comments

  • Kgirl
    Kgirl Member Posts: 45
    #2
    Low WBC counts
    Lynn,

    You are not the only one with this problem. I am on chemo and have chronically low counts. Neulasta does not work for me either. I have been switched to weekly chemo and have neupogen shots every Saturday and Sunday and have chemo on Tuesday. This regimen allows me to have counts high enough to take my chemo. So far, I have not had any fevers or infections. I am on topotecan and avastin. Let me know if you have any other questions.

    I hope this can work for you as well!

    Kathy
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #3
    Sorry to hear your news
    Hi Lynn, I can't remember what chemo you were getting but my counts have dropped like too. I think our bodies just need a little longer break and then you'll be surprised how it can handle the next line of treatment. Last time I was on the carbo, my doc said no more as I had neutropenia and my platelets never got to more than 75, but walla here I am over a year later and bone marrow working ~ well with the help of shots but working. So maybe if you can allow yourself 6weeks or more off chemo it well be just what your body needs. Sounds like you got your ducks in a row to find the next doc to help if needed.

    Hugs ♥ Prayers bonnie
  • Linn1
    Linn1 Member Posts: 47
    #4
    Kgirl said:

    Low WBC counts
    Lynn,

    You are not the only one with this problem. I am on chemo and have chronically low counts. Neulasta does not work for me either. I have been switched to weekly chemo and have neupogen shots every Saturday and Sunday and have chemo on Tuesday. This regimen allows me to have counts high enough to take my chemo. So far, I have not had any fevers or infections. I am on topotecan and avastin. Let me know if you have any other questions.

    I hope this can work for you as well!

    Kathy

    Thanks. I will keep your
    Thanks. I will keep your routine in my list of comments/questions for my next meeting. With a clinical trial there is very little to no deviation from the protocol and if a change is needed it typically means you are out and that's where I'm at. I had low counts before with carbo/taxol and took longer breaks in between the chemo but the trial won't allow.

    I'm upset becasue it means starting all over again with a 3rd form of treatment in a relatively close time span, it's getting emotionally and physically wearing. Also, don't feel like I'm getting the best advice that's why I'm trying to figure out the top places to go in the country.

    Whatever the next form of treatment is for me, maybe your weekly regiment with weekly shots will be the key. Thanks for the input.
  • Linn1
    Linn1 Member Posts: 47
    #5
    BonnieR said:

    Sorry to hear your news
    Hi Lynn, I can't remember what chemo you were getting but my counts have dropped like too. I think our bodies just need a little longer break and then you'll be surprised how it can handle the next line of treatment. Last time I was on the carbo, my doc said no more as I had neutropenia and my platelets never got to more than 75, but walla here I am over a year later and bone marrow working ~ well with the help of shots but working. So maybe if you can allow yourself 6weeks or more off chemo it well be just what your body needs. Sounds like you got your ducks in a row to find the next doc to help if needed.

    Hugs ♥ Prayers bonnie

    Hi Bonnie-
    As always, your
    Hi Bonnie-
    As always, your advice is useful. The docs won't give me that much time off from the meds because it doesn't meet the standards of the clinical trial, so I will be removed and have to figure out the next form of treatment. This will be the 3rd form of treatment in approx. 1.5 years. It may be time to get another opinion.
    Always open to ideas.
    Thanks for responding.
    Lynn
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #6
    TOP 2 DOCS
    DR. RICHARD BARAKAT AT MEMORIAL SLOANE KETTERING IN NYC.

    DR. BOBBIE GOSTOUT (WOMAN) HEAD OF GYNECOLOGY AND ONCOLGY AT MAYO CLINIC IN ROCHESTER, MN

    YOU CAN GO IN-LINE AND GET THEIR NUMBERS. IF YOU CANNOT FIND THEM LET ME KNOW AND I WILL GET FOR YOU.

    THEIR RESULTS WITH THIS DISEASE ARE REMARKABLE.
  • Linn1
    Linn1 Member Posts: 47
    #7
    Lisa13Q said:

    TOP 2 DOCS
    DR. RICHARD BARAKAT AT MEMORIAL SLOANE KETTERING IN NYC.

    DR. BOBBIE GOSTOUT (WOMAN) HEAD OF GYNECOLOGY AND ONCOLGY AT MAYO CLINIC IN ROCHESTER, MN

    YOU CAN GO IN-LINE AND GET THEIR NUMBERS. IF YOU CANNOT FIND THEM LET ME KNOW AND I WILL GET FOR YOU.

    THEIR RESULTS WITH THIS DISEASE ARE REMARKABLE.

    top docs
    Thank you very much. I will look into both names, I just want to have a list of names/places ready so that I can seek another opinion if necessary. Are you working with one or both of these physicians?
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #8
    Linn1 said:

    top docs
    Thank you very much. I will look into both names, I just want to have a list of names/places ready so that I can seek another opinion if necessary. Are you working with one or both of these physicians?

    docs
    Dr. Richard Barakat is reating my mother, but he is the "guy" in NY. Everyone knows him.

    Bobbie Gostout is my surgeon and gyn/onc. I was referred to her by luck. I had no idea she was head of gyn/onc at Mayo. We have hit it off. I love her.

    Then by coincidence, she is good friends with Dr. Barakat. It is a small world, the gyn/onc world. We are working on an article together. She removed my ovaries and is monitoring my CA-125. I see her this friday if you want me to give her your name and see if I can get you in, let me know.
  • Linn1
    Linn1 Member Posts: 47
    #9
    Lisa13Q said:

    docs
    Dr. Richard Barakat is reating my mother, but he is the "guy" in NY. Everyone knows him.

    Bobbie Gostout is my surgeon and gyn/onc. I was referred to her by luck. I had no idea she was head of gyn/onc at Mayo. We have hit it off. I love her.

    Then by coincidence, she is good friends with Dr. Barakat. It is a small world, the gyn/onc world. We are working on an article together. She removed my ovaries and is monitoring my CA-125. I see her this friday if you want me to give her your name and see if I can get you in, let me know.

    docs
    Yes, any connection would be greatly appreciated. You can even mention my doctor's - see if there are any thoughts/reactions. It is a very small world with the physicians in this particular field. I currently see Dr. Ernst Lengyl and Dr. Gini Fleming at University of Chicago. The clinical trial I have been involved with (PARP Inhibitor/ABT-888) is a joint study with U of C and Mayo. Does your mom live in NY or did she move to seek treatment?
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #10
    Linn1 said:

    docs
    Yes, any connection would be greatly appreciated. You can even mention my doctor's - see if there are any thoughts/reactions. It is a very small world with the physicians in this particular field. I currently see Dr. Ernst Lengyl and Dr. Gini Fleming at University of Chicago. The clinical trial I have been involved with (PARP Inhibitor/ABT-888) is a joint study with U of C and Mayo. Does your mom live in NY or did she move to seek treatment?

    Hi
    I promise I will discuss with Dr. Gostout Friday. My mother is in NY at Sloane Kettering. I reside in MN. I travel back and forth to help. I have a sister in NY who does a lot. I relieve her. Sadly, my brother has tuned out to be not very helpful. My mother was lucky to get the doc she did and so am I. I truly think God was watching over us. During all this with my mother, my CA-125 was 45 and we found family history so I had surgery myself in October to remove ovaries and fallopian tubes as well. It's been quite an interesting few months. Do you have an e-mail where I can mail you back any feedback I get this Friday?

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