waiting for dx T Cells on tonsil (and rash)

Sable1416
Sable1416 Member Posts: 8
in Lymphoma (Hodgkin and Non-Hodgkin) #1

My husband had a swollen right tonsil that was affecting his sleep and swallowing.   2 ENTs examined him, and said probably cancer.    He had the tonsillectomy a week ago, and the pathology is not done, althought flow cytometry (?) shows T cells.   He has no other symptoms except a rash on his back and a little on inner elbows (on his back he gets on and off and has had for over 25 years - no dermatologist could ever diagnose.     We are extremely worried as T cell is so rare.   Waiting is awful, and just looking for some comfort.   

Comments

  • po18guy
    po18guy Member Posts: 1,465 Member
    #2
    T-Cells are part of the immune system

    What you fear are malignant T-Cells. Since there is inflammation or infection involving his tonsils, normal T-Cells would observed there, as they are dispatched to the scene when trouble is discovered. Seek a second opinion on the biopsy samples, preferably from a major cancer treatment center or university hospital pathology lab. You can find the closest one here. And yes, the waiting is horrible, but there is nothing we can do other than keep very busy, hope and  pray for the best. If it is a malignancy, travel to one of the NCI centers, while a hassle, can be a life-saver. It most certainly has saved my life three times now.

  • Sable1416
    Sable1416 Member Posts: 8
    #3
    po18guy said:

    T-Cells are part of the immune system

    What you fear are malignant T-Cells. Since there is inflammation or infection involving his tonsils, normal T-Cells would observed there, as they are dispatched to the scene when trouble is discovered. Seek a second opinion on the biopsy samples, preferably from a major cancer treatment center or university hospital pathology lab. You can find the closest one here. And yes, the waiting is horrible, but there is nothing we can do other than keep very busy, hope and  pray for the best. If it is a malignancy, travel to one of the NCI centers, while a hassle, can be a life-saver. It most certainly has saved my life three times now.

    so unsure

    Thank you.   The ENT was not able to say if they were malignant, just that the lab said they were noticeably there.    She was not going to commit to anything until the full results.     The tonsil had only swelled up and became uncomfortable in the past month.   My husband is 62, and today is outside painting.   He feels so good to have it out.     I will definitely get a second opinion on the samples, we are a few hours away from MSK and I have already contacted my insurance company about getting that second (I am not sure they participate with MSK, but if this is a T Cell lyphoma, and no one else is able to treat it, I will fight for non-par.   I worked in the Medicaid and Managed Care systems for years, and I know the fight).  Thanks again for your help!

     

  • po18guy
    po18guy Member Posts: 1,465 Member
    edited April 2017 #4
    MSK is a destination facility

    Great! They are world class and you can have confidence in their pathology.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,811 Member
    #5
    po18guy said:

    MSK is a destination facility

    Great! They are world class and you can have confidence in their pathology.

    Question

    Po,

    I know you are medically and technologically well-versed. Do you know of any software I could begin to use that types via voice ? My hands are getting unusable. I have a hard time writing at blogs and boards any furthere

    maqx

  • po18guy
    po18guy Member Posts: 1,465 Member
    edited April 2017 #6
    PC or Mac?

    I believe that Macs have voice-to text software. I will ask my PC nut of a son if he knows of such PC software. For Mac, here is what Google has: https://www.google.com/search?q=apple+speech-to-text&ie=utf-8&oe=utf-8

  • lindary
    lindary Member Posts: 711 Member
    edited April 2017 #7
    voice to text

    I have heard about this on the radio but I don't know anyone who has used it. It looks like they have more than 1 version.

    https://www.nuance.com/dragon.html

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,811 Member
    #8
    lindary said:

    voice to text

    I have heard about this on the radio but I don't know anyone who has used it. It looks like they have more than 1 version.

    https://www.nuance.com/dragon.html

     

    thanks

    Thanks Linda and Po.

    I have used simple Google voice and a Bluetooth for some time, but word processing is a little more complex. Following your leads. My hands are woprse at nite for some reason.   I am not sure if it is more motor-neurological or cognative either.   Hopefully seeing a neurologist in about two weeks. I have known RBD, which highly indicates emergence of Parkinson's (over 50% liklihood to develop Parkinson's with people who have Rem Behavior Disorder {RBD}, discovered in sleep lab). RBD is a defect in the wiring of the brain stem, which "freezes" normal people during REm sleep. People with RBD do not "freeze," and can act out nightmares. I have thrown myself horozintally off the bed before in a ded sleep, hit head on nightstsand. bloodied face.  Besides RBD, the sleep lab said I also have some sort of sleep "stage sequencing" problem, very rare: My sleep stages go from one to the other in totally random order, not the usual cycles.   With former chemo fog and organic brain damage from the wreck, I guess I should have some noggin issues !

    Doc said I had what superficially looked like a condition known as "Continuous Tremor" in 1987.  This is good, since Continuous Tremor is not degenerative in the manner of Parkinson's.  I started shaking in 1987 after ICU, but the docs attributed that to profound muscle atrophy-weakness. It comes and goes, not continuous at all, and affects both hands, which is common in CT, but uncommon in early Parkinson's.  I go back to my Double-Boarder threead if I learn anything; sorry to interrupt this T-Cell discussion.

  • lindary
    lindary Member Posts: 711 Member
    edited April 2017 #9
    Max & Po

    Both of you have a health history that could make any one shake their head and wonder how you got through it. Not only have you survived what was thrown at you but you also take time to use your experiences to help all of us.

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