Webinar for Patients

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Webinar for Patients

September 22 @ 10:00 - 11:00 EDT

Free

The questions I would like to ask my doctor

A special webinar for patients!

Our experts that will respond your questions:

Prof. Joshua Sonett,

Thoracic and Cardiac Surgery

NewYork-Presbyterian/Columbia University Medical Center

New York, USA

Arun Rajan, Senior Clinician

Medical Oncology

National Cancer Institute, National Institutes of Health (NCI/NIH)

Bethesda, USA

 

 

To join our webinar you will need to register. Registration is free of charge. Webinar will be transmitted through WebEx platform.



We thank everyone who joined the September webinar and for submitting question to the panel.

ITMIG excited to announce we are planning to schedule more patients/doctor webinar’s beginning in 2021. Our panel will always do out best to answer all questions submitted for the particular webinar. At this time we are not able to provide Q & A to our panel on a regular basis. Therefore, we ask you wait until our next webinar to present questions. Prior to the webinar we will solicit questions for that session.



 

Details

Date:
September 22
Time:
10:00 - 11:00 EDT
Cost:
Free
Event Categories:
,

Organizer

the International Thymic Malignancy Interest Group
Email:
pbruce@thymic.org
Website:
https://www.itmig.org
17 Comments
  1. Is there anything we can do to stop a reoccurrence of thymoma and does removing the thymus make our immunity weakened?

  2. I have Masaoka Stage I Type AB thymoma. It was 7.3 x 5.6 x 3.3 cm. Transcapsular invasion could not be determined: focal gross defect in capsule. Radiation therapy has been recommended.
    1. I am 69 years old. Given that thymoma is slow-growing, how long may it be before a recurrence would cause problems? Given my age, am I likely to die from something else? (Just thinking about the “watch and wait” algorithm applied to prostate cancer, for example)

    2. How long had my thymoma been growing in my chest?

    3. What does “focal gross defect” mean?

  3. Any insight as to pregnacy and active disease. Currently 40 years old, wanting to get pregnant and have been trying for past year; however, recent scan showed growth in one nodule from 1.1 to 2.7 in left lung. I’m not in treatment, currently in monitoring phase with scans every 3-4 months for the past 2 years.

  4. I was diagnosed with Thymic Carcinoma, stage 4A, five years ago. I am currently being treated with Sutent, which I have taken for 2.5 years.
    It is strong medication which has destroyed my thyroid, but in general, I have tolerated it well and it has kept my cancer in check. My two questions are:

    1) For how long can one safely be on Sutent?

    2) What is the current view on immunotherapy for those with Thymic Carcinoma? Is it widely recommended or are there
    still concerns about it?

  5. Thank all of you for the questions to our experts! You bring up very important issues.
    More questions or doubts? Don’t hesitate to write to us!

  6. Hello, finding I had extemely low white blood cell count, I was diagnosed with a huge thymoma.which was successfully removed in 2010. My white blood cell count improved but stayed low. I was then diagnosed with Good syndrome. In 2013 multiple.metastasis.were found in the lungs, too small and.too slowly growing for.chemotherapy. i am not treated for the thymoma as such. In 2018 I was diagnosed with anti immune hemolytic anemia, for which i have since been treated with Prednisone. It turned out to be a.chronic condition which worsens occasionally, like after a pneuminia earlier.this year. The metastasis are growing very slowly, but I think there are many, the biggest is now 2,5 cm. They don’t bother me but the low white and red blood cell.count do. The relationship between the blood problems and the thymoma is presumed, not established. I see several doctors, the hemotologist mostly, but also pneumologist, immunologist and the pneumologist at the Netherlands cancer institute. The big question is there chemo or not to chemo. Most doctors say: last resort. One says: better when yoi are still fit than wait until your condition worsens. So, it is tricky for a patient to know who’s advise to follow. Plus nobody can give me any indication what the prognosis is on the blood values. There are some date.for.the prognosis on the metastasis but I get.nothing on the real problem, the weak immunity and.the anemia. So that’s what I would really like.to know more about so I can make a reasonable choice.when the time comes. I am 66 a mother of 4 and.grandmother.of nearly 6 and a passionate gardener. Thank you for this initiative!
    Annemiek

  7. Hello, my name is Irina, I am from Russia and i have thymic carcinoma recurrence, stage 4a. I have passed surgery, first line chemo (paklitakcel+ karboplatin), radiation and now i have been taking Ret gene inhibitor for 1 year (it’ s clinical study in Germany). But the tumor continues growing and the doctors say to change treatment. What other options are possible for treatment? May be any clinical trials in Europe or the Usa? Unfortunately in Russia there are no other options than chemo. There are no clinical trials for thymic carcinomas in Russia at all. Could you kindly recommend smth?
    Thank you.
    Best regards,
    Irina

    • Irina, hello. My name is Darya Drobysheva, i am from Russia too. I have metastases of atypical carcinoid in the intrathoracic lymph nodes, neuroendocrine tumor of the thymus,Grade 2. Please connect me if its possible, you can find me by my name in social networks. I have questions to you and sorry that i didnt connect to you firstly cause i couldnt find you in any social networks.

  8. I am a 69 y.o. grandmother w B2 thymoma, diagnosed 2014 after presentation with constellation of neurological symptoms incl diplopia, difficulty swallowing and requiring feeding through PEG tube 18 mths eventually considered to be symptoms of myasthenia related to thymoma. Resection 2015 resulted in rapid improvement. With recurrence in mediastinum in 2017 developed paraneoplastic red cell aplasia which responded to steroids. Once recovered, in 2018 underwent multimodal approach with preoperative radiotherapy to areas inaccessible to surgery, total pleurectomy and diaphragmatic resection, pericardiectomy and decortication followed by adjuvant chemotherapy with cisplatin, Adriamycin and cyclophosphamide (CAP) x 4 with GCSF support. There has been further radiation of small areas in 2019. Regular catscans have shown continued spread. Till now asymptomatic but recent onset mild right shoulder tip pain & increased fatigue. Recently found out I have BRCA2 gene.
    Latest CT scan 20/8/20 showed multiple deposits including pleurally based mass at level of superior segment RLL now measuring 71.38mm was 56X28 in 6.2020. Further inferiorly another medial pleural deposit 44X32mm, previously 36X23mm. Deposit involving right horizontal and oblique fissures now 83x35mm. Mass right lung base mildly larger at 97X13mm, may involve right lateral arcuate ligament. Some deposits in left hemithorax also appear larger e.g. adjacent to aorta, 35X12mm and others. No definite new parenchymal nodule. Mediastinum overall similar.
    As disease is progressing, but lungs essentially well preserved, medications under consideration include:
    1. Everolimus
    2. Permatrexate
    3. PARP inhibitor ( considered speculative)
    Questions: To help in deciding which choice would be best, could you help with these points
    1. Experience with everolimus, esp w pts with prior auto-immune disease related to thymoma. The phase two study and previous advice suggested it could result in some response at least in up to 80% . However, worry of interstitial pneumonitis.
    2. Is it known if there are similarities between the auto-immune reactions assoc with thymoma and the non-infectious interstitial pneumonitis described as a s/e for everolimus ie is it the same mechanism or not?
    3. To what extent does permatrexate affect spread of disease if it doesn’t eliminate it?
    With thanks and see you midnight my time
    Raie Goodwach

  9. Is it safe and possible for patients who were diagnosed with thymoma to get pregnant and have kids? Should the patients take genetic test before pregnancy?

  10. Chaowalit Thamsonglar 22 September 2020 at 00:37 Reply

    My wife was diagnosed with thymoma B2, stage 4A, inoperable, during 7 month of pregnacny in september 2018. She is 37 years old. She then had gone through CAP, radiotherapy and ocreotide lar + prednisone treatment consequently. She was treated with ocreotide lar + prednisone for 7 months. The tumor shrank 70% by volume. We did a CT scan on 4th and 7th month and there is no different in size of the tumor.

    Current situation : the main tumor size of 4.3×3.6×3.4cm still invades left-sided superior mediastinum and left-sided pericardium. this mass also encases main pulmonary artery. She also have multiple pleural metastasis in left pleural cavity measuring up to 1.3cm in thickness. At this point, the surgeon suggested that the surgery is not worth the risk. Currently, we stop the treatment because it no longer shrink the tumor. Also, she has an pituitary gland tumor which we diagnosed that it secrete prolactin ( diagnosed in 2017 ). I and doctor decided to stop the octreotide lar + prednisone treatment to check if the pituitary gland tumor also secrete any growth hormone. if it is, the surgery for pituitary gland tumor will be planned. Whether her pituitary gland tumor secrete growth hormone or not, we will try the octreotide lar + prednisone treatment again next year and see if it can shrink the tumor more.

    Questions
    – Do you agree that the surgery is not worth the risk?
    – If not what we plan to do, what treatment would u suggest?
    – in October 2019, she started having a diarrhea and we started octreotide lar treatment in Jan 2020, she continued having a diarrhea. but diarrhea could be one of the side effect of octreotide lar. but now we stop the treatment for 3 months, she still have a diarrhea. Could this diarrhea be related to thymoma?

  11. Good morning from Italy! My husband was diagnosed in 2013, thymic carcinoma stage 2A. Since then, he went through chemo (cap), radiations and 3 surgeries due to recurrences (last one in 2016 with a pleurectomy). He’s been on Sutent since December 2017 due to lymphnodes metastasis, and it is keeping disease stable even though it has quite heavy side effects. Is there evidence about how long it’s safe to take Sutent? We know immunotherapy is more and more an option in USA, but here in Italy it seems not the same unfortunately. Is there any joint trial you are following with any of Italian hospitals?

  12. According to the report released by MGH on ASCO this year, KMT2A-MAML2 fusion gene was considered as a drive mutation of thymoma, especially in subtype B thymoma.
    1. What is the opinion of our expert on this article?
    2. Will it effect the treatment on the subtype B patients who have been detected KMT2A-MAML2 mutation?
    3. What is the latest update or progressing on this finding?
    Thanks in advance.

  13. Will the subtype B thymoma patients take more risk to accept the treatment of PD-1 like Keytruda or other immunity therapy than the patients of other cancers? Especially myasthenia gravis patients?
    Will the new immunity therapy release for the MG patients in short term?

  14. Tiffany Crozier 6 October 2020 at 22:58 Reply

    Hello, my name is Tiffany and after 2+ years of trying to get a diagnosis on an anterior mediastinal mass I’ve recently been diagnosed with malignant Thymoma. It’s believed that I am stage III or IVa and subtype B1 or B2. The recommended treatment is 6 weeks proton therapy plus chemo (carboplatin + pacitraxel). After treatment I’ll be scanned to determine if resection is possible. The tumor is around my aorta and involved with pericardium, pulmonary artery and phrenic nerve.

    Having been to proton therapy center for my husband whose being monitored for prostate cancer he was told that if he chose proton therapy he wouldn’t be a candidate for surgery. Is it different with Thymoma? Protons first and surgery still possible?

    We were so glad to find ITMIG. Thank you for all you all are doing with research and awareness. You hear so much about other types of cancer but not this kind. It’s been very difficult to navigate and it seems there are lots of different opinions for treatment. I’m now back at home in Seattle waiting for appts to determine if they agree with the treatment recommendation I’ve received to determine for instance if proton center will “accept” me as a patient.

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