Thymoma Survivors/Caregivers?

Peanuts55
Peanuts55 Member Posts: 1
edited July 2023 in Rare and Other Cancers #1
My fiance was diagnosed with a thymoma 11/21 and has undergon 4 chemo cycles (PAC Regimen), the tumor shrank drastically and he will now be able to have surgery on 4/11. Is there anybody who is has been through or is going through the same journey? Just looking for support and information...Thank you!

Comments

  • slpacheco
    slpacheco Member Posts: 1
    #2
    Thymoma
    Wow!!! Finally, someone else who may know a little bit about my journey.... I am a Thymoma with Myasthenia Gravis Survivor as of September 2007. My battle took 18 months of my life. If you have any questions, please let me know and I will try my best to answer them. If your fiance has completed their journey, I would like to know how they are doing.

    Also, how old is your fiance? And what part of the body were the tumors at? Please respond as soon as possible as I am very excited to communicate with someone else that may understand this illness.

    My personal email is sandysclown@hotmail.com.

    I look forward to hearing from anyone who may have survived this cancer, or who is going through it now. As I feel I may have a lot of useful information to help others.

    God Bless You!!

    Sandy
  • Redneck Mom
    Redneck Mom Member Posts: 2
    #3
    slpacheco said:

    Thymoma
    Wow!!! Finally, someone else who may know a little bit about my journey.... I am a Thymoma with Myasthenia Gravis Survivor as of September 2007. My battle took 18 months of my life. If you have any questions, please let me know and I will try my best to answer them. If your fiance has completed their journey, I would like to know how they are doing.

    Also, how old is your fiance? And what part of the body were the tumors at? Please respond as soon as possible as I am very excited to communicate with someone else that may understand this illness.

    My personal email is sandysclown@hotmail.com.

    I look forward to hearing from anyone who may have survived this cancer, or who is going through it now. As I feel I may have a lot of useful information to help others.

    God Bless You!!

    Sandy

    Thymoma
    I was diagnosed with Stage 4 Thymoma in 2007. When the tumor was discovered it was the size of a softball connected to my lung, aorta, heart and even my voice box. I was given a 50/50 chance of survival. I was devistated. I feel that I have been to hell and back. I lost a job that I loved for 12 years because of the Cancer. I almost died on Christmas, 2007, but now I am cancer FREE. I still have checkups every 3 months. I would love to hear from survivors of Thymoma. My cancer was treated at Deaconess Hospital in Evansville, Indiana.
  • kunhadi
    kunhadi Member Posts: 1
    #4
    Redneck Mom said:

    Thymoma
    I was diagnosed with Stage 4 Thymoma in 2007. When the tumor was discovered it was the size of a softball connected to my lung, aorta, heart and even my voice box. I was given a 50/50 chance of survival. I was devistated. I feel that I have been to hell and back. I lost a job that I loved for 12 years because of the Cancer. I almost died on Christmas, 2007, but now I am cancer FREE. I still have checkups every 3 months. I would love to hear from survivors of Thymoma. My cancer was treated at Deaconess Hospital in Evansville, Indiana.

    Thymoma IV

    Hello, Redneck Mom

    What are the treatments for your cancer that you received and how long?

    Many Thanks

    KH

  • Vstrippoli
    Vstrippoli Member Posts: 1
    #5
    slpacheco said:

    Thymoma
    Wow!!! Finally, someone else who may know a little bit about my journey.... I am a Thymoma with Myasthenia Gravis Survivor as of September 2007. My battle took 18 months of my life. If you have any questions, please let me know and I will try my best to answer them. If your fiance has completed their journey, I would like to know how they are doing.

    Also, how old is your fiance? And what part of the body were the tumors at? Please respond as soon as possible as I am very excited to communicate with someone else that may understand this illness.

    My personal email is sandysclown@hotmail.com.

    I look forward to hearing from anyone who may have survived this cancer, or who is going through it now. As I feel I may have a lot of useful information to help others.

    God Bless You!!

    Sandy

    Good Afternoon!

    Good Afternoon!

     

    My mom is going through this now.  I am desprerately searching for guidance or support!

  • theaton
    theaton Member Posts: 1 *
    edited February 2023 #6

    Hi everyone,

    My mom is recently diagnosed with thymoma with myasthenia gravis. I’m here to ask for support and guidance as well. She’s at Stage 4 and the oncologist is recommending chemo with Doxorubicin, cytoxan, and cisplatin. Has anyone been through it with the same or similar combo? [Content removed by CSN Team]

    I appreciate any insights.

    Thea

  • shaomingming
    shaomingming Member Posts: 4 Member
    #7

    Hi I am a new member of CSN. I just joined today. I share my experience with other patients here...

    I diagnosed Stage II A thymona in Sept. 2022 and I had my tumor removed. The size of my tumor is 2.5 cm. After the surgery, I had proton therapy, totally 28 sessions. All my surgery and proton therapy were done in University Hospital of Pennsylvania. The hospital has doctors specialized in thymoma. I am very fortunate that my girlfriend works in the hospital and helped to arrange all these tests. This made my procedures fast.

    I have to have my CT Scan every 6 months in the first 2 years and then CT Scan every year. I hope my information would be helpful for patients with the same disease.

  • Rarelene1
    Rarelene1 Member Posts: 3 Member
    #8

    Hello there I'm in the mist of my thymoma storm. First of all my journey began years ago with different health issues that were given every diagnoses but thymoma . I also had bad doctors who didn't listen , believe or do test,scans or needed x-rays went through 5 months of chemo to shrink a 11cm mass that grew to that size in 15 months. I had a bad case of the flu in 2/20 an x-ray showed no mass. A visit to the ER in 7/21 for breathing problems found this mass. My thymoma was invasive & attached to my left lung . My surgery was 4/22 & my second 3 month ct scan found a nodule in that left lung & my third ct scan show that that nodule has doubled in size. Only my husband & doctor know because I can't bring myself to except it a second time I'm in shock, in a daze and I can't stand the pain on my childrens or other love ones faces again. Don't know what to do!

  • shaomingming
    shaomingming Member Posts: 4 Member
    #9
    https://csn.cancer.org/discussion/comment/1706372#Comment_1706372

    Dear Rarelene1,

    My treatment and diagnosis were done in Abramson Cancer Center, Perelman Center, Penn Medicine (https://www.pennmedicine.org/cancer). Dr. Steven Feigenberg is specialized in thymoma. You can search above website for this doctor and make an appointment. Thymoma is a rare decease. Not many doctors are specialized in this decease. It is not surprised that you have gone through so many tests and procedures and finally was diagnosed with thymona. By Dr. Feigenberg thymoma is very difficult to be detected; it is usually diagnosed accidentally. I don't know which state you live. I live in New Jersey, not far from Philly. If you live far from Philly, you may consult Penn Medicine for doctors specialized in thymoma close to you. Let me know if I can provide any useful information.


  • DavidDanz
    DavidDanz Member Posts: 3 Member
    edited July 2023 #10
    https://csn.cancer.org/discussion/comment/1704020#Comment_1704020

    I had cancer of the Thymus and the tumor was removed at the MAYO CLINIC in Rochester, Minnesota after many medical mis steps. We barely made it to the surgery in time. The injury to the phrenic nurve left one lung paralyzed. I was diagnosed at the same time with Myasthenia Gravis and Alpha One Antrisiptine condition. I have weekly Infusions of PROLASTIN ( for the alpha one Antrisiptine status) and IV IG ( intravenous immuno globuline for the Myastenia Gravis). I am "great" except when I am not......seriously. [content removed by CSN Support Team]. I would be happy to help if I can. If anything could go wrong it did and we always "worked the problem" and came out OK. We have utilize five different medical systems here is Wisconsin, Illinois Minnesota and California. We finally have a pretty good handle on things and can answer most questions.

  • Rarelene1
    Rarelene1 Member Posts: 3 Member
    #11
    https://csn.cancer.org/discussion/comment/1706372#Comment_1706372


  • Rarelene1
    Rarelene1 Member Posts: 3 Member
    #12

    I was diagnosed in 7/21, had 4 sessions of chemo & had surgery on 4/22 . I was checked every 3 months & on the 6 month check a nodule was found in the pleural near my heart . Nothing was done just watched but 3 months later the CT showed 3 nodules which had doubled in size. Now they want 3 more months of chemo & after radiation to stop the aggressive thymoma . I was told that thymoma was not cancer but what's the difference when it act like & is treated as such. Has anyone else had metastasis or invasive and how do you deal with the emotions, anxiety & stress?

  • DavidDanz
    DavidDanz Member Posts: 3 Member
    #13
    https://csn.cancer.org/discussion/157412/thymoma-survivors-caregivers
    https://csn.cancer.org/discussion/comment/1707491#Comment_1707491

    "Biopsy proven thymoma" is certainly Cancer. Plus there is the issue of the phrenic nerve which goes basically threw the thymus and controls your diaphragm. Even "upsetting" (by moving slightly) that nerve can adversely affect your breathing. I came out of the cancer surgery with a mostly paralyzed diaphragm. However my margins were and continue to be good. I had and have myasthenia gravis which is a quite difficult neurological disease. Often removal of the thymus is a "cure" (?) for myasthenia gravis. That was not the case for me. I have received weekly infusions for the last four years. As far as emotions, anxiety and stress I would hit the internet and research all of these matters. Most medical articles are created at MAYO or the CLEVELAND CLINIC. Read, read, read, ......ask, ask, ask ...... and question, question, question. EVERY specialist I spoke with encouraged a second opinion from another specialist. And they often know or know off the referred physician. You MUST STAY AWAY FROM TOXIC INDIVIDUALS. Must.....and that may include family members. So be it.

    I have utilized five (5) medical networks and therefore have five (5) interconnected on line "my charts". I currently utilize three (3) and stay away from the other two (2). They are in three (3) different states and there is an overlapping of experts and specialists. We have driven many miles and taken many, many flights. We found it to be necessary because of the difficulty of detection, diagnosis and treatment. We ALWAYS have something else coming up medically on the near horizon. We do NOT GO to anyone (including friends and family) and release information. We ONLY give information to people we trust, respect and can rely on. They will come to you. This is a full time job. You do not need any negative nellies or sad sacks. Remember that 95% of people who ask "how are you" want the response .......great and are at a loss if you say something else. We found a trip to the MAYO CLINIC in Rochester, Minnesota to be absolutely invaluable. You can not get enough information. God speed.

  • DavidDanz
    DavidDanz Member Posts: 3 Member
    edited July 2023 #14
    https://csn.cancer.org/discussion/comment/606170#Comment_606170
    https://csn.cancer.org/discussion/comment/1707489#Comment_1707489

    See my other post. I just posted it minutes ago. [content removed by CSN Support staff] My journey started in the beginning of 2017 (!).

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