Kathy

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  • in reply to: Expert consult relevant after therapy? #10129
    Kathy
    Keymaster

    Hi Carol,

    I’m sorry to hear that you have this diagnosis. It’s very good, though, to hear that the cancer was found at an early stage, all removed and that you’ve completed chemotherapy and are scheduled for radiation treatment.

    Your question about a second opinion is warranted. We strongly suggest a second opinion to ensure that you are receiving the best care. And as you are doing, it’s so important to self-advocate and be vigilant about your health, especially when diagnosed with gyn carcinosarcoma.

    Most importantly, we recommend that all patients be cared for by a gynecologic oncologist who has significant expertise in carcinosarcoma. We have identified a few physicians (in addition to Dr. Birrer and Dr. Arend) who have much experience caring for patients with gyn carcinosarcoma and have included these names on our website. If you don’t find anyone near you, let us know and we can try to help.

    It’s difficult for patients to identify the experience of their doctor. Patients who have their diagnosis and care at a health care system affiliated with a university may be more likely to be treated by physicians who see more patients with gyn carcinosarcoma. These oncologists may also have more options for alternate therapies if the cancer is resistant to the standard care or returns (immunotherapy, clinical trials, and so on).

    It is also important to be screened at reasonable intervals. The “reasonable” options can vary quite a bit (several months, 6 months, a year) and may vary per patient, depending on the amount of cancer present on first diagnosis, treatment, and so on.

    I hope others on the forum will share about seeking a second opinion.

    Regarding other ways to improve your recovery and health, I’m hoping others on the forum will share their experiences.

    Please keep in touch.

    All the best,
    Kathy
    ________________________________________
    Kathy Wilt, Ph.D., R.N
    Member, Board of Directors, The GCS Project

    in reply to: Dealing with recourrence and lack of treatments #10119
    Kathy
    Keymaster

    Dear Maria,

    I am so sorry to hear about your mother’s passing after such an awful ordeal. Thank you for letting us know what has been happening. This disease is difficult to manage with even the best specialists and treatments at hand, but it is even more frustrating when the health care options aren’t open to patients – in your mother’s case because of restrictions in the NHS. It seemed to be especially difficult to work outside of the public health system to get your mom treatment that might have controlled the tumors. As you noted, it is different in the US, but we still run into problems when we try to utilize specialists and treatments outside of our insurance plans. Most of this stems from the fact that GYN carcinosarcoma is such a rare disease and rare diseases get insufficient resources.

    I am so moved by your offer to help us make this information more accessible to Spanish-speaking patients and families. I will let our Board of Directors (my fellow volunteers!) know and get back to you by email. I can envision having our content/articles available in Spanish as pdfs or perhaps as separate webpages. Thank you so much for your suggestion and generous offer of support.

    Finally, your point on the quietness of the Forum is well taken. We’ve noticed it also. I believe it is because we no longer push out notifications to all participants when there is a new Forum post. We halted this practice because of complaints of unwanted email, but we need to reassess this. I think it would help us build this important dialogue. Our founder, Diane Redington, strongly believed that the Forum was a critical part of our mission, and we would like to strengthen it so that it provides consistent support for our community members.

    My deepest condolences,
    Kathy Wilt (Medical Advisory Committee Chair, The GCS Project Board of Directors)

    in reply to: PARP Inhibitors? #10047
    Kathy
    Keymaster

    Hi Rick and Diana,
    I’m forwarding your question to our consultants and will write on the forum with any helpful information.
    In the meantime, I looked at clinicaltrials.gov and saw that there are are several clinical trials utilizing PARP inhibitors for carcinosarcoma.

    1) Testing the Addition of an Immunotherapy Drug, Tremelimumab, to the PARP Inhibition Drug, Olaparib, for Recurrent Ovarian, Fallopian Tube or Peritoneal Cancer. ClinicalTrials.gov Identifier: NCT04034927 https://clinicaltrials.gov/ct2/show/NCT04034927?term=PARP+inhibitor&cond=carcinosarcoma&draw=2&rank=3

    2) Recurrent Ovarian CarcinoSarcoma Anti-pd-1 Niraparib (ROCSAN), ClinicalTrials.gov Identifier: NCT03651206). This trial is not yet recruiting. https://clinicaltrials.gov/ct2/show/NCT03651206?term=PARP+inhibitor&cond=carcinosarcoma&draw=2&rank=2

    I share this to let you know that researchers are looking to PARP inhibitors, among other therapies, to manage carcinosarcoma.

    Best to you!

    Kathy Wilt
    The GCS Project

    in reply to: Adjuvant radiotherapy, how is your experience? #10046
    Kathy
    Keymaster

    Dear Margret and Marianne,

    Thank you for posting your questions and writing about your experiences.

    Marianne – I hope you do well with pelvic radiation. Please continue to write and let us know how you do. Hoping others will share their experiences with this.

    Magret – The list of supportive therapies your mom is using is impressive. Thanks for including these. I was not familiar with Hamamelis water, so I looked it up. We call it “witch hazel” in the US – and like your Hamamelis water, it’s water-based.

    Kathy

    in reply to: Switzerland, Carcinosarcoma Uterus, 2 positiv lymph nodes #10045
    Kathy
    Keymaster

    Hi Margret,

    Thank you for sharing this update about your mother. It’s heartening to hear that she is doing well, had a good report from the PET scan and is tolerating the therapies. It’s especially good to hear that she is able to continue her work as an artist. It was so good that you pursued finding an oncologist after her surgery. Receiving chemotherapy after surgery is the standard here.

    Your posts give encouragement to others.

    My best to you, your mother and family.

    Kathy Wilt
    The GCS Project

    in reply to: Just Diagnosed #9989
    Kathy
    Keymaster

    Hi Margaret,

    It’s very good that your cancer has been caught early. I hope surgery goes well – all the cancer is removed, and your recovery is smooth. One thing we stress is that it is vital to be treated by a gynecological oncologist (medical and/or surgical) who has significant experience treating women with carcinosarcoma – someone who sees more than just a few cases a year. There are general recommendations for treating carcinosarcoma and it is important to be carefully monitored (especially since the cancer may be resistant to first line therapy).
    It’s good that you are going into surgery feeling well. As you move ahead to chemotherapy, please keep in touch on the forum. Our community can help you as you move through chemo. It’s so important to advocate for yourself and bring along your family or a friend to help you.

    Keep in touch.

    All the best,
    Kathy Wilt

Viewing 6 posts - 1 through 6 (of 39 total)