Ommaya Resovoir

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Sinatra
Sinatra Member Posts: 5
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I WAS DIAGNOSED WITH LYMPHOMA IN SEPT OF 2009 AND IT WAS INDOLENT BUT STAGE 4. IN jANUARY OF THIS YEAR IT MOVED TO LARGE B CELL AND BECAOME AGRESSIVE. AFTER 6 1/2 R-CHOP TREATMENTS THERE IS NO SIGN OF CANCER IN THE BLOOD OR SPINAL FLUIDS BUT NOW THERE IS A SMALL MASS THAT HAS APPEARED IN THE 3RD NERVE OF THE CAVERNOUS SINUS OF THE BRAIN. ALSO AFFECTED ARE THE 5TH AND 6TH AND 7TH NERVES EVIDENCED BY EYE PROBLEMS, TEETH NUMBNESS AND NON-EFFECTIVE TIGHTENING OF CHEEKS. AFTER 7 ROUNDS OF RADIATION TO THE BASE OF MY SKULL AND 8 MORE TO FOLLOW, THEY ARE PUTTING AN "OMMAYA RESOVOIR" IN MY SCALP ON JULY 18 TO RECEIVE CHEOMO (METHODROXINE) TWICE A WEEK FOR MONTHS TO COME. I DON'T WANT TO DO IT! I'VE HAD ENOUGH CHEMO AND WITH GOOD REGULR EXERCISE AND A VEG BASE DIET AND LAUGHTER AND ATTITUDE I THINK I CAN SURVIVE.

HAS ANYONE HAD THIS KIND OF EXPERIENCE OR SOMETHING CLOSE?

THANK YOU FOR YOUR COMMENTS,
SINATRA

Comments

  • KC13167
    KC13167 Member Posts: 215
    #2
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    Yikes
    You are in a tough situation. I'm very fond of my cranial nerves, as I'm sure you are! There could be some quality of life issues should they become more affected than they already are.

    While I currently have NED, I do have an inoperable mass in my low spine that effects my gait,strength in my legs, numbness in my butt and causes me much pain. I hope that it will not worsen as time goes on.

    Let me know what you decide, I'll keep my eyes on this post. I hope someone has some personal insight on the Ommaya.

    Kellie
  • Sinatra
    Sinatra Member Posts: 5
    #3
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    KC13167 said:

    Yikes
    You are in a tough situation. I'm very fond of my cranial nerves, as I'm sure you are! There could be some quality of life issues should they become more affected than they already are.

    While I currently have NED, I do have an inoperable mass in my low spine that effects my gait,strength in my legs, numbness in my butt and causes me much pain. I hope that it will not worsen as time goes on.

    Let me know what you decide, I'll keep my eyes on this post. I hope someone has some personal insight on the Ommaya.

    Kellie

    Thanks Kellie, I appreciate
    Thanks Kellie, I appreciate your comments. What is NED, not familiar.
    I just feel this additional chemo is overkill in my situation sice they have not seen any evidence of lymphoma in my spinal fluids, only facial and eye dis-functions which indicate the nerves are affected.
    This has happened so fast and I think I may postpose the surgery for the Ommaya tomorrow and continue to process. What do you think?

    Sinatra
  • KC13167
    KC13167 Member Posts: 215
    #4
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    KC13167 said:

    Yikes
    You are in a tough situation. I'm very fond of my cranial nerves, as I'm sure you are! There could be some quality of life issues should they become more affected than they already are.

    While I currently have NED, I do have an inoperable mass in my low spine that effects my gait,strength in my legs, numbness in my butt and causes me much pain. I hope that it will not worsen as time goes on.

    Let me know what you decide, I'll keep my eyes on this post. I hope someone has some personal insight on the Ommaya.

    Kellie

    NED
    Sinatra,

    NED is the acronym for no evidence of disease.

    If I were in your shoes and not ready for the surgery, I would put it off until I was ready.

    Good luck with it all,
    Kellie
  • Sinatra
    Sinatra Member Posts: 5
    #5
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    KC13167 said:

    NED
    Sinatra,

    NED is the acronym for no evidence of disease.

    If I were in your shoes and not ready for the surgery, I would put it off until I was ready.

    Good luck with it all,
    Kellie

    Well, I had it deone.
    Well, I had it deone. Resovoir sucdesfully impanted in my head ready to receive chemo into the affected area specifically the 3rd nerve. And then yesterday fot my first injection which included an exchange of spinal fluids with the chemo. However, the pressure network changed and all hell broke loose as soon as the job was complete. Sweaty, vomiting, chills, all of the above. 2 hours later I started to regain sanity and now must go through the same exersize 4 more times. They said they will give me anti nausea meds before the procedure in the future.
    Just wanted to tell someone.
    Thanks Kellie,
    Alan
  • KC13167
    KC13167 Member Posts: 215
    #6
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    Sinatra said:

    Well, I had it deone.
    Well, I had it deone. Resovoir sucdesfully impanted in my head ready to receive chemo into the affected area specifically the 3rd nerve. And then yesterday fot my first injection which included an exchange of spinal fluids with the chemo. However, the pressure network changed and all hell broke loose as soon as the job was complete. Sweaty, vomiting, chills, all of the above. 2 hours later I started to regain sanity and now must go through the same exersize 4 more times. They said they will give me anti nausea meds before the procedure in the future.
    Just wanted to tell someone.
    Thanks Kellie,
    Alan

    Sorry
    Alan,

    I'm so sorry that it turned out the way it did. I hate throwing up. Sounds like you went through hell. I hope it will be easier for you the next time around.

    Kellie

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