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Everything posted by Nav

  1. No treatment available
  2. Yeah we just got a 2nd opinion and the prognosis of my dad is not good.
  3. Hi , I know there is not much knowledge in the group about Glomus tumor. My dad is currently on the ventilator due to respiratory distress due to the 10cm in his left lung. They are trying to wean him off ventilator however it’s looks far fetched. They are wanting to extubating him and since he is alert and cognitive we are scared to extubate him. Anyone in similar situation. He wants to live however we are not given any treatment options. What to do?
  4. Has anyone able to shrink a 10cm mass with a Glomus tumor ?
  5. LouT, Yes the local hospital we initially took my dad to had to send it to Mayo Clinic for second opinion. The hospital he is currently admitted at due to declining condition as the Mass in lung and the metastasis all over causing respiratory distress. He is currently in ICU on a ventilator due to cancer associated complications and they are asking to make a decision if the breathing trials fails. All this has happened in the matter of month. From diagnosis to ventilator now. We are all shocked and heart broken as soon we have to make the decision of letting him go. We are told by our local hospital there is no treatment available.
  6. We had to take him to the ER yesterday as he had a lot of fluid build up in his lungs may be due to the newly diagnosed ca. He has been diagnosed with a rare type of cancer. Glomus Tumor . We are trying to find a place where they treat rare cancers.
  7. Nav

    Malignant Glomus Tumor

    Hi LexieCat, I have attached the Mayo Clinic report. We are looking for some guidance from this group. We are thinking about getting a 2nd opinion on this. We need recommendations for any prestigious hospitals or cancer centers who would treat Glomus Tumor.
  8. Nav

    Malignant Glomus Tumor

    LexieCat, Initially the hospital biopsy results said Focal spindle and when they sent out the biopsy sample to Mayo Clinic for second opinion, Mayo Clinic came up with Malignant Glomus Tumor. His chest X-ray showed 10cm mass along with a scrotal mass. He also has some nodules on the scalp. It has mostly affected his left lung and has now affected his right lung in the matter of 2 weeks.
  9. Anyone with the above tumor?
  10. My dad is discharged from the hospital with diagnosis of 10 cm lung mass by the hospital oncologist after doing bone scan, CT scan and lung needle biopsy. We are waiting for results which were sent to Mayo Clinic by them for second opinion. In the meantime, since the discharge we have been given hospice care for comfort and support while results come. My dad has really bad shortness of breath and shortness of breath with tiny bit of exertion. We have started him on 5mg morphine as per hospice for Shortness of breath however morphine effects on shortness of breath lasts for an hour or so. How is extreme SOB managed in Lung ca patients other than morphine?
  11. Pulmonologist prescribed him prednisone
  12. Nav

    Question

    Judy M2, There is no particular medication given by oncologist. It’s what hospice has given him. Hospice suggests Robinul and Morphine and keep talking about end of life when we want curative approach. We have given him Robinul for the wet cough he is having. Wondering what other lung CA patients are given for wet cough and chest tightness and if the oncologist is involved even before the test results are in?
  13. Nav

    Question

    My dad is discharged from the hospital with diagnosis of 10 cm lung mass by the hospital oncologist after doing bone scan, CT scan and lung needle biopsy. We are waiting for results which were sent to Mayo Clinic by them for second opinion. In the meantime, since discharge my dad is experiencing sob, wet cough however there is no help from the oncologist. After several trips to ER , the Er requested us to contact the hospital oncologist for support for SOB. The hospital oncologist has referred hospice care to us whose medications are morphine for SOb, Robinul for secretions. Who is supposed to be treating his lung ca symptoms such as wet cough, chest tightness? He is having really bad cough unable to sleep and sob for which we have him on oxygen however we are not ready for hospice medications.. why won’t the oncologist see him . His secretary says waiting for Mayo Clinic results. Who can provide some relief for him especially the cough.. ? Sorry for the rant again.. we are frustrated managing his symptoms at home.
  14. Do the oncologist manage your symptoms related to the new diagnosis while waiting for test results. We are thankful they are taking their time to assess the right medication however who manages the symptoms such as wet productive cough and chest tightness probably due to his current diagnosis?
  15. My dad is discharged from the hospital with diagnosis of 10 cm lung mass by the hospital oncologist after doing bone scan, CT scan and lung needle biopsy. We are waiting for results which were sent to Mayo Clinic by them for second opinion. In the meantime, since discharge my dad is experiencing sob, wet cough however there is no help from the discharge hospital oncologist. After several trips to ER , the Er requested us to contact the same hospital oncologist for support for SOB. The hospital oncologist referred us to hospice care. They are not answering any questions just saying wait for results. Although we were not expecting hospice to take over while we are waiting for results as we want the curative approach , we are confused why hospice. The hospice has been pushing us for morphine and has given us Robinul and Duoneb and oxygen concentrator for support. We are not comfortable with morphine which they are pushing very much. Is Robinul and liquid Morphine given to lung cancer patients without knowing the results?? We are so confused???
  16. My 81 year old dad was diagnosed with pulmonary nodules in the lung and a 10cm mass in left lung by the ER. They did a bone scan, CT scan and biopsy of the left lung . They kept him in the hospital for 3 days for pericardial effusion and released us with a diagnosis of Magilnant focal spindle cell of lung and said to make an appointment within 1 week with the oncologist who saw him in the hospital. When we called for the appointment they said they have sent the result to Mayo Clinic for 2nd opinion and it’s been 2 weeks and the oncologist just keeps saying waiting for results from Mayo Clinic. Are they ignoring us ? We feel like they want us to go away and the oncologist is not doing any consultation either without Mayo Clinic results. Is this normal or they are just telling us to go away without being upfront about what to do next.. we are so confused.. do oncologists play games.. sorry this is all new to us.. we are overwhelmed..
  17. How to relief the cough that comes with lung cancer and COPD?
  18. Hi, My 81 year old dad just got diagnosed with 10cm lung mass and pulmonary nodules. He is also a COPD patient who went every 3 months for chest x-rays and on the last chest x-ray he was told about the 10cm lung mass and pulmonary nodules. We were shocked as just 3 months ago, his chest X-ray was clear. How can a mass grow 10cm in 3 months? We are beyond disbelief? So far they have done a needle biopsy and CT scan. Bone scan is clear. They have sent him home to wait for the biopsy results which are sent out to Mayo Clinic for 2nd opinion. They are saying it takes 2-3 weeks for Mayo Clinic to get back. Is this how it goes normally the process once they see a lung mass? We are so lost and currently are managing his Shortness of breath with inhalers and nebuilzers as he is also a COPD patient. Please let us know if we need to be doing something we are not doing . Oncology office says wait for results. Is this normal process? Thanks
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