MSK is evaluating my records...

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  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #22
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    forgive my ignorance
    Carlene, please forgive my ignorance but is trouble with your thyroid been linked to ovarian cancer? I am just wondering b/c you speak of that profile. I'm asking b/c my sister-in-law was just had surgery for cancer and she has been on meds for her thyroid for years.
    God bless you all and thank you for your replies.
    Sincerely,
    Debbie
  • pattysoo
    pattysoo Member Posts: 170
    #23
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    I tried too
    I was so interested in this trial. I feel that I'm an ideal candidate, so I called MSK and they think I am too. Then came the bad news, they want my insurance to pay for the doctor visits and the (many) CT scans. My insurance is a no-go for out of state treatment unless it's medically necessary. They certainly won't go for a phase I trial. So it looks like I won't be pursuing this. I'm still really interested in how it goes for you, so please keep posting about it, and good luck.
  • vj1
    vj1 Member Posts: 150
    #24
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    luck, prayers and cheers!
    Carlene:
    Hope all works out for you to pursue this. If I were back in Pa, I would come up to see you in NY---who knows maybe someday. You are amazing and thank you!

    Verna
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #25
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    debbiejeanne said:

    forgive my ignorance
    Carlene, please forgive my ignorance but is trouble with your thyroid been linked to ovarian cancer? I am just wondering b/c you speak of that profile. I'm asking b/c my sister-in-law was just had surgery for cancer and she has been on meds for her thyroid for years.
    God bless you all and thank you for your replies.
    Sincerely,
    Debbie

    I had tyyroid issues for
    I had tyyroid issues for years prior to the OC diagnosis, but since I started chemo my meds have been increased from 15 mg per day to 90. I think the chemo has really trashed my thyroid.

    Carlene
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #26
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    pattysoo said:

    I tried too
    I was so interested in this trial. I feel that I'm an ideal candidate, so I called MSK and they think I am too. Then came the bad news, they want my insurance to pay for the doctor visits and the (many) CT scans. My insurance is a no-go for out of state treatment unless it's medically necessary. They certainly won't go for a phase I trial. So it looks like I won't be pursuing this. I'm still really interested in how it goes for you, so please keep posting about it, and good luck.

    Patty...they have not yet
    Patty...they have not yet mentioned money but I guess that could still come up. I thought clinical trials were always gratis, but I guess not.

    Medicare is my primary but I have secondary (UHC) and another supplemental, as well. I guess I will find out soon who's going to foot the bill. At what point did they drop that little nugget on you?

    Carlene
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #27
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    jloe said:

    I am a former AA FA & my husband is retired AA pilot (JFK)
    Carlene,
    I hope we all meet up at MSK on 53rd one day (LisaQ, Nancy & the others). I wish it were under better circumstaces but I guess not. I live in NY and feel very lucky to have all of the facilities close to home. Great hospitals and doctors in TX too! BTW my UHC has maxed out at 300k and I'm in the transition of going to the APA supplemental and all of the facilities and doctors work with me in this transition. Go figure!

    Joni

    Joni, I would love to meet
    Joni, I would love to meet up with you. It looks like Lisa's mom is going to be doing her new chemo in Florida, so she won't be hanging around MSK for awhile.

    UHC is my secondary (Medicare is primary - I have been on SS disability for several years, unrelated to OC, and have had Medicare since 2006 or so). We pre-funded for the supplemental, too. Good thing, huh?

    I think we are losing both the secondary and supplemental in a couple of years because of the new health care law that prohibits lifetime dollar limitations. Check with your union, though. Ours is Transport Workers, so not the same as yours and your husband's. My husband was a crew chief in wide body maintenance. Sixteen years with Braniff and seventeen with AMR.

    Carlene
  • pattysoo
    pattysoo Member Posts: 170
    #28
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    Hissy_Fitz said:

    Patty...they have not yet
    Patty...they have not yet mentioned money but I guess that could still come up. I thought clinical trials were always gratis, but I guess not.

    Medicare is my primary but I have secondary (UHC) and another supplemental, as well. I guess I will find out soon who's going to foot the bill. At what point did they drop that little nugget on you?

    Carlene

    costs
    The reviewer (Can't remember her name) brought it up early on - since I'm from out of state. Maybe since this is funded by Sloan Kettering they have limited funds. I hope your coverage foots the bill. I'm going to look deeper into my insurance, but I doubt they'll be willing to pay for a Phase I. You could always call them and ask for details about who pays.
  • msfanciful
    msfanciful Member Posts: 559
    #29
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    Hi Carlene,
    That's
    Hi Carlene,

    That's absolutely fantastic news; good luck!


    Sharon
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #30
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    Hissy_Fitz said:

    Patty...they have not yet
    Patty...they have not yet mentioned money but I guess that could still come up. I thought clinical trials were always gratis, but I guess not.

    Medicare is my primary but I have secondary (UHC) and another supplemental, as well. I guess I will find out soon who's going to foot the bill. At what point did they drop that little nugget on you?

    Carlene

    costs
    My inurance pays 100% of everything at MSKCC. I have no co-pays. With that being said, I believe the cost of meds, doctor vists and blood tests are of no charge in clinical trials. I don't think scans are free. I think Linda might have mentioned something one time about this.

    I've been on disability since I was diagnosed. Starting in March I will now be covered under Medicare A. This means that now Medicare A will be my primary, right? I declined Medicare B. I wish I could have declined Medicare A too!!! I have great health insurance through my husband.
  • jloe
    jloe Member Posts: 174
    #31
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    Hissy_Fitz said:

    Joni, I would love to meet
    Joni, I would love to meet up with you. It looks like Lisa's mom is going to be doing her new chemo in Florida, so she won't be hanging around MSK for awhile.

    UHC is my secondary (Medicare is primary - I have been on SS disability for several years, unrelated to OC, and have had Medicare since 2006 or so). We pre-funded for the supplemental, too. Good thing, huh?

    I think we are losing both the secondary and supplemental in a couple of years because of the new health care law that prohibits lifetime dollar limitations. Check with your union, though. Ours is Transport Workers, so not the same as yours and your husband's. My husband was a crew chief in wide body maintenance. Sixteen years with Braniff and seventeen with AMR.

    Carlene

    That would be great!
    I'll send you my contact information since you posted your email. My appointment is on the 21st and I think your before that. I am here in NYC all of the time.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #32
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    msfanciful said:

    Hi Carlene,
    That's
    Hi Carlene,

    That's absolutely fantastic news; good luck!


    Sharon

    My insurance wouldn't cover any 'complications' ....
    I was all set to participate in a clinical trial through Fox Chase in Philadelphia, and had all my records sent and had my initial consultation. The drug company would supply the experimental drug at no cost. Then Fox Chase's pre-cert people called me and said my insurance would not pay for any complications that arise from the experimental drug. That meant they wouldn't cover anti-nausea drugs, pain pills (neither of which I have ever taken in the 2+ years I've been in treatment) OR,...and this was the kicker,...would not cover any hospitalizations that might occur during the time I was taking the experimental drug OR cover any hospitalizations that could later be attributable to the experimental drug.

    That just sounded like TOOOOO much of a financial risk, even though no chemo drugs I've ever been on have put me in the hospital. So I bowed out of the trial and took Doxil, which didn't work for me.

    My chemo oncologist said that, had I been trying to get into a clinical trial that they were doing locally, he would have had my scans, etc. all submitted as 'routine' and unrelated to the trial, and would have made an argument with my insurance that any hospitalization WAS unrelated to the trial. I just can't imagine taking a chance of financially ruining my husband,.even if the chance was pretty small...at least not at that time when it seemed like I had a lot of other chemo options to try. But I think I will re-visit the Clinical Trial options soon, now that the more conventional chemo drugs don't seem to be knocking back my cancer. I hope you don't run into any insurance challenges.
  • LPack
    LPack Member Posts: 645
    #33
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    Hissy_Fitz said:

    Patty...they have not yet
    Patty...they have not yet mentioned money but I guess that could still come up. I thought clinical trials were always gratis, but I guess not.

    Medicare is my primary but I have secondary (UHC) and another supplemental, as well. I guess I will find out soon who's going to foot the bill. At what point did they drop that little nugget on you?

    Carlene

    Money
    Wonderful, Carlene!

    So far my insurance has been great with the clinical trial. It will not deny the cost of any routine patient care administered to an insured participating in any stage of an eligible cancer clinical trial if that care would be otherwise covered if the insured was not participating in a clinical trial.

    We have already been paying out of the pocket co pay expenses for the shots I have to take for low white counts. Those have been rather large but not near as large as the actual costs. My new onc/gyn does not use the Neumega shots for low platelets.

    The trial itself has paid for all the chemos, all the blood work done at the facility and scans (ct, muga) and tests needed for the trial above and beyond what would be normal.

    Keep keeping us posted.

    Libby
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #34
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    nancy591 said:

    costs
    My inurance pays 100% of everything at MSKCC. I have no co-pays. With that being said, I believe the cost of meds, doctor vists and blood tests are of no charge in clinical trials. I don't think scans are free. I think Linda might have mentioned something one time about this.

    I've been on disability since I was diagnosed. Starting in March I will now be covered under Medicare A. This means that now Medicare A will be my primary, right? I declined Medicare B. I wish I could have declined Medicare A too!!! I have great health insurance through my husband.

    Yes, Nancy...Medicare will
    Yes, Nancy...Medicare will now be your primary and your husband's group plan will be your secondary. Part A only covers in-patient care - no office visits, chemo, etc. I took Part A, which is free, and Parts B and D, even though I also had really good coverage, with no premiums, thru my husband. I think that when you have cancer, it's a good idea to take all the coverage you can get, as long as it's not cost prohibitive.

    This is what I found on the medicare.gov site...

    Medicare pays for routine costs of items and services in covered research studies. Examples ofthese items and services include the following:
    Room and board for a hospital stay that Medicare would pay for even if you weren’t in a study
    An operation to implant an item that’s being tested
    Treatment of side effects and complications that may occur as a result of the study

    Medicare won’t pay for the following:
    • The new item or service that the study is testing
    (except for certain medical devices) unless
    Medicare would cover the item or service even if
    you weren’t in a study
    • Items and services the study gives for free (many
    times the treatment will be provided free by the
    study sponsor)
    • Items or services given only to collect data and not
    used in your direct health care (such as monthly
    CT scans for a condition that usually requires only
    an annual scan)
    • Coinsurance and deductibles

    So....it looks like Medicare may not pay for all the CT scans, but should cover everything else. Hopefully my secondary will pick up the cost of those.

    Carlene
  • Unknown
    Unknown
    #35
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    Hissy_Fitz said:

    Here is the info, cut and
    Here is the info, cut and pasted from MSK site:

    Full Title :
    PHASE I TRIAL OF UNIMOLECULAR PENTAVALENT (GLOBO-H-GM2-STN-TF-TN) IMMUNIZATION OF PATIENTS WITH EPITHELIAL OVARIAN, FALLOPIAN TUBE, OR PERITONEAL CANCER IN FIRST REMISSION
    Purpose :
    The purpose of this study is to evaluate the safety and preliminary effectiveness of a new vaccine designed to train the immune system to recognize and fight ovarian, fallopian tube, or peritoneal cancer cells. The vaccine is being assessed in patients with these cancers who have achieved a first remission and have a high risk of cancer recurrence. Investigators will assess various doses of the vaccine.

    The vaccine in this study contains antigens or "fingerprints" that are found on many cancer cells, especially those from the ovaries, fallopian tubes, or peritoneal cavity (inside lining of the abdomen). The antigens in this vaccine are called Globo-H, GM2, sTn, TF, and Tn. They have been assessed in patients individually; this is the first time all of the antigens have been put together on a single molecule and evaluated in patients.

    The antigens are given with a material called QS-21, which may help the immune system to make more cancer-fighting cells. The group of antigens is attached to a material called keyhole limpet hemocyanin (KLH), which has been used for many years to boost the immune system in laboratory animals and in people.

    This comment has been removed by the Moderator
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #36
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    unknown said:

    This comment has been removed by the Moderator

    Everyone gets the vaccine.
    Everyone gets the vaccine. It's a very small study. Follow up tests are just CA125 and CT scans, as far as I know.

    Obviously, there is no way to test a vaccine on the general public. The only logical candidates are women who have had ovarian cancer, but no longer show evidence of disease. The idea is that if they give us the vaccine and a large percentage of us do not have a recurrence (they follow us for two years), then it works, because statistically, the vast majority of us WILL recur.

    Carlene
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #37
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    unknown said:

    This comment has been removed by the Moderator

    Sorry....duplicate post
    My computer must have the hiccups!
  • Unknown
    Unknown
    #38
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    Hissy_Fitz said:

    Everyone gets the vaccine.
    Everyone gets the vaccine. It's a very small study. Follow up tests are just CA125 and CT scans, as far as I know.

    Obviously, there is no way to test a vaccine on the general public. The only logical candidates are women who have had ovarian cancer, but no longer show evidence of disease. The idea is that if they give us the vaccine and a large percentage of us do not have a recurrence (they follow us for two years), then it works, because statistically, the vast majority of us WILL recur.

    Carlene

    This comment has been removed by the Moderator

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