Non Hodgkins T-cell Lymphoma

kymmc
kymmc Member Posts: 3
Hi, My name is Kym and I am 41 in November of 2001 I was diagnoised with Non Hodgkins T-cell Lymphoma. My spleen was very enlarged and it was in my liver. I went through 5 months of (CHOP) chemo and then I had a stem cell transplant in May of 2002. So far so good. But I have never talked with anybody that has had T-cell lymphoma. Is there anybody out there that has survived this one?

Thank You.
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Comments

  • BADDAD
    BADDAD Member Posts: 3
    MY HUSBAND HAS PERIPHERAL T-CELL LYMPHOMA. HE IS IN STAGE II. HE HAS HAS ENLARGED LYMPH NODES IN HIS CHEST.HE HAS HAD ONLY ONE TREATMENT OF CHOP. WE ARE GOING TO DANA FARBER CANCER INSTITUTE MAR. 7TH. HE JUST TURNED 50. WE ARE LOOKING FOR SURVIVORS ALSO. LET US KNOW IF YOU FIND ONE.
  • jnova
    jnova Member Posts: 1
    BADDAD said:

    MY HUSBAND HAS PERIPHERAL T-CELL LYMPHOMA. HE IS IN STAGE II. HE HAS HAS ENLARGED LYMPH NODES IN HIS CHEST.HE HAS HAD ONLY ONE TREATMENT OF CHOP. WE ARE GOING TO DANA FARBER CANCER INSTITUTE MAR. 7TH. HE JUST TURNED 50. WE ARE LOOKING FOR SURVIVORS ALSO. LET US KNOW IF YOU FIND ONE.

    Hello Baddad. I recently battled T-Cell lymphoma (stage III), and I am glad to say that I am in remission and feeling better than ever. I was treated at Weil Cornell Medical Center in NYC and underwent CHOP chemo as well as a stem cell transplant. I would love to talk with you about my experience.
  • BADDAD
    BADDAD Member Posts: 3
    jnova said:

    Hello Baddad. I recently battled T-Cell lymphoma (stage III), and I am glad to say that I am in remission and feeling better than ever. I was treated at Weil Cornell Medical Center in NYC and underwent CHOP chemo as well as a stem cell transplant. I would love to talk with you about my experience.

    I WOULD LOVE TO TALK TO JNOVA! I AM 50 AND HAVE PERIPHERAL T-CELL LYMPHOMA STAGE II.I HAD ONE TREATMENT OF CHOP AND GOING TO DANA FARBER AND MEMORIAL SLOAN KITTERING FOR SECOND OPINION. I DONT KWOW WHAT TO EXPECT. I WOULD LIKE TO TALK WITH YOU ABOUT YOUR EXPERIENCES. MUCH OF THE FEAR IS NOT KNOWING. BADDAD
  • kymmc
    kymmc Member Posts: 3
    jnova said:

    Hello Baddad. I recently battled T-Cell lymphoma (stage III), and I am glad to say that I am in remission and feeling better than ever. I was treated at Weil Cornell Medical Center in NYC and underwent CHOP chemo as well as a stem cell transplant. I would love to talk with you about my experience.

    Hi, I read your reply. Sounds like we had the same treatments. I was Stage 4 when they finally found out what I had. I had CHOP for 5 months (once every 3 weeks) and then I had my stem cell transplant on May 2, 2003. I was very lucky and was able to use my own stem cells. I went yesterday for another check up and passed my CATSCAN. With each visit I get more hopeful. I would love to talk with you a share experiences.
  • BADDAD
    BADDAD Member Posts: 3
    jnova said:

    Hello Baddad. I recently battled T-Cell lymphoma (stage III), and I am glad to say that I am in remission and feeling better than ever. I was treated at Weil Cornell Medical Center in NYC and underwent CHOP chemo as well as a stem cell transplant. I would love to talk with you about my experience.

    MY NAME IS RON. I WOULD LOVE TO TALK TO SOMEONE WITH SOME EXPERIENCE IN THIS. I AM GOING FOR MY SECOND TREATMENT OF CHOP NEXT WEEK. I REALIZE THERE IS A LONG ROAD AHEAD FOR ME. KNOWING WHAT TO EXPECT BRINGS LESS FEAR. IM ALREADY HAVING SIDE EFFECTS FROM CHOP. YOU CAN ALSO REACH ME AT [email protected] LOOKING FOR SOMEONE WITH INFO AND EXPERIENCE WITH THIS. THANKS
  • didi1031
    didi1031 Member Posts: 3
    jnova said:

    Hello Baddad. I recently battled T-Cell lymphoma (stage III), and I am glad to say that I am in remission and feeling better than ever. I was treated at Weil Cornell Medical Center in NYC and underwent CHOP chemo as well as a stem cell transplant. I would love to talk with you about my experience.

    Hi, I am new to the site. I was diagnosed with T-cell NHL in 12/2001. I underwent CHOP and RT and was in remission for a whole two months. Now, I am going to undergo a bone marrow transplant. My brother and sister are both a match. Is it a lot like what you went through? I am really concerned and very scared. I am alone most of the time and have too much time to sit and think. My husband doesn't like dealing with it so he works all the time and is not home until I am in bed. We never talk, and I am just so lonely through all of this. Please send me a message and help me better understand what I am about to face - ALONE.
  • bowgett
    bowgett Member Posts: 2
    didi1031 said:

    Hi, I am new to the site. I was diagnosed with T-cell NHL in 12/2001. I underwent CHOP and RT and was in remission for a whole two months. Now, I am going to undergo a bone marrow transplant. My brother and sister are both a match. Is it a lot like what you went through? I am really concerned and very scared. I am alone most of the time and have too much time to sit and think. My husband doesn't like dealing with it so he works all the time and is not home until I am in bed. We never talk, and I am just so lonely through all of this. Please send me a message and help me better understand what I am about to face - ALONE.

    YOUR NOT ALONE! I am 31 and was just diagnosed with aggresive anaplastic large cell lymphoma with T-cell phenotype, stage 2. I am undergoing chop, I have had 2 treatments.

    I felt so bad for you when I read your message, I have a very supportive husband and I couldn't do it with out him. If there is anything I can do for you let me know or if you just want to chat my e-mail is [email protected]
  • bowgett
    bowgett Member Posts: 2
    BADDAD said:

    MY NAME IS RON. I WOULD LOVE TO TALK TO SOMEONE WITH SOME EXPERIENCE IN THIS. I AM GOING FOR MY SECOND TREATMENT OF CHOP NEXT WEEK. I REALIZE THERE IS A LONG ROAD AHEAD FOR ME. KNOWING WHAT TO EXPECT BRINGS LESS FEAR. IM ALREADY HAVING SIDE EFFECTS FROM CHOP. YOU CAN ALSO REACH ME AT [email protected] LOOKING FOR SOMEONE WITH INFO AND EXPERIENCE WITH THIS. THANKS

    Hello Ron, My name is Jen I was diagnosed with aggresive stage 2 anaplastic large cell lymphoma in January of this year I have had 2 treatments of chop. If you want to chat my e-mail is [email protected]
  • LadyLuv9982
    LadyLuv9982 Member Posts: 1
    Hello.. My name is Melissa, and I'm 20yrs old... I was diagnosed with T-Cell non-hogkins lymphoma in Sept.'02... I had a tumor in my chest the size of a soccer ball and spots on my kidneys... I am happy to say everything is gone and I've been in remission since Dec.'02... I have 2 more weeks of chemo treatments and then I start radiation... I don't really know what to expect from the radiation so if anyone's already gone through this please let me know how it was...
  • Mariette
    Mariette Member Posts: 3
    bowgett said:

    YOUR NOT ALONE! I am 31 and was just diagnosed with aggresive anaplastic large cell lymphoma with T-cell phenotype, stage 2. I am undergoing chop, I have had 2 treatments.

    I felt so bad for you when I read your message, I have a very supportive husband and I couldn't do it with out him. If there is anything I can do for you let me know or if you just want to chat my e-mail is [email protected]

    I was diagnosed with anaplastic large cell lymphoma, null cell phenotype, (most likely T-cell origin or something that has to do with T-cells), about three weeks ago. I've heard that this is a rare lymphoma and usually affects older people. I am 26 years old. I just started my first cycle of "CHOP" chemo. last week. If anyone has any info. on this...please let me know. I am scared. My ALK-1 stain was negative...which means that my 5-year survival rate based on previous research is 40%. Mine is stage II E. My name is Mariette. My email is: [email protected]
  • daydreamer
    daydreamer Member Posts: 1
    didi1031 said:

    Hi, I am new to the site. I was diagnosed with T-cell NHL in 12/2001. I underwent CHOP and RT and was in remission for a whole two months. Now, I am going to undergo a bone marrow transplant. My brother and sister are both a match. Is it a lot like what you went through? I am really concerned and very scared. I am alone most of the time and have too much time to sit and think. My husband doesn't like dealing with it so he works all the time and is not home until I am in bed. We never talk, and I am just so lonely through all of this. Please send me a message and help me better understand what I am about to face - ALONE.

    DiDi
    sorry to hear about the pain I'm sure your in. But I asure you your not alone. I'm going through this just as you are and I know that God is with me every step of the way. The world is scared and there feelings towards cancer are born out of fear. Forgive anyone who dos'nt understand what your going through it will help you more than you understand, and forgive your husband and pray for him. And remember that you are loved. Jesus gave his life for us. And if you would of been the only one alive he would have still done it. I know its all hard to face but keep faithful,and remember that love is your most valualble friend. Open your heart and remember your not alone. And I know that you don't know me but I love you. God bless and may you find happiness as well as healing in the name of Jesus Christ..........
  • Mariette
    Mariette Member Posts: 3
    didi1031 said:

    Hi, I am new to the site. I was diagnosed with T-cell NHL in 12/2001. I underwent CHOP and RT and was in remission for a whole two months. Now, I am going to undergo a bone marrow transplant. My brother and sister are both a match. Is it a lot like what you went through? I am really concerned and very scared. I am alone most of the time and have too much time to sit and think. My husband doesn't like dealing with it so he works all the time and is not home until I am in bed. We never talk, and I am just so lonely through all of this. Please send me a message and help me better understand what I am about to face - ALONE.

    Hi didi1031. My name is Mariette. I have Anaplastic Large Cell Lymphoma (aggressive NHL). I just found out yesterday that I need a bone marrow transplant. I am 26. I just did my first cycle of "CHOP" chemo. two weeks ago. I have a 13 cm mediastinal mass and a 5 cm tumor on my neck. I would love to chat with you about the bone marrow transplant. I am scared to death. I don't know what to expect and I don't know who to talk to. My e-mail is [email protected]
  • kyle
    kyle Member Posts: 2
    BADDAD said:

    MY NAME IS RON. I WOULD LOVE TO TALK TO SOMEONE WITH SOME EXPERIENCE IN THIS. I AM GOING FOR MY SECOND TREATMENT OF CHOP NEXT WEEK. I REALIZE THERE IS A LONG ROAD AHEAD FOR ME. KNOWING WHAT TO EXPECT BRINGS LESS FEAR. IM ALREADY HAVING SIDE EFFECTS FROM CHOP. YOU CAN ALSO REACH ME AT [email protected] LOOKING FOR SOMEONE WITH INFO AND EXPERIENCE WITH THIS. THANKS

    I'm so glad to find a group of people with a similar diagnosis. I have Anaplastic large T-cell high grade lymphoma, Stage III. I was diagnosed Feb 28, 2003. I have tumors in each arm pit, and several in my groin area. I began the CHOP chemo 2 weeks ago. I also receive ARA-C by intrathecal injection into the spinal fluid. These are given weekly. I'm scared out of my mind. And I'm so sick all the time. I would love to talk to all of you that are going through this! Be well.
  • kyle
    kyle Member Posts: 2
    I'm so glad to find a group of people with a similar diagnosis. I have Anaplastic large T-cell high grade lymphoma, Stage III. I was diagnosed Feb 28, 2003. I have tumors in each arm pit, and several in my groin area. I began the CHOP chemo 2 weeks ago. I also receive ARA-C by intrathecal injection into the spinal fluid. These are given weekly. I'm scared out of my mind. And I'm so sick all the time. I would love to talk to all of you that are going through this! Be well.
  • jacky
    jacky Member Posts: 1
    kyle said:

    I'm so glad to find a group of people with a similar diagnosis. I have Anaplastic large T-cell high grade lymphoma, Stage III. I was diagnosed Feb 28, 2003. I have tumors in each arm pit, and several in my groin area. I began the CHOP chemo 2 weeks ago. I also receive ARA-C by intrathecal injection into the spinal fluid. These are given weekly. I'm scared out of my mind. And I'm so sick all the time. I would love to talk to all of you that are going through this! Be well.

    My husband was diagnosed with peripheral t cell otherwise undifferenciated. He has had CHOP ( CAT and PET were clear, but after 4 wk. of daily radiation another gland aoppeared. He has since had Ontak. Has tolerated tx well. He's 76. Other than decreased energy and joint pain, he is doing well. However he still has 3 nodules- all on the left axilla area on the left. Rrecemtly he has developed red patches on his face. Can this be cutaneous t cell. Like to hear from anyone with any information or just how they have done with the diagnosis. Any Dr. who specialize in t cell?
  • gypsygranny
    gypsygranny Member Posts: 1
    kymmc said:

    Hi, I read your reply. Sounds like we had the same treatments. I was Stage 4 when they finally found out what I had. I had CHOP for 5 months (once every 3 weeks) and then I had my stem cell transplant on May 2, 2003. I was very lucky and was able to use my own stem cells. I went yesterday for another check up and passed my CATSCAN. With each visit I get more hopeful. I would love to talk with you a share experiences.

    Hi - -
    I am writing this for my sister who doesn't have a computer, but has Stage IV T-cell lymphoma NK - phenotype unknown. She just started CHOP chemo and for her first cycle she had a couple of relatively bad days. Her question and mine is: do the side-effects get worse as the chemo continues, or do they pretty well stay the same ?
  • Linz1216
    Linz1216 Member Posts: 2
    kymmc said:

    Hi, I read your reply. Sounds like we had the same treatments. I was Stage 4 when they finally found out what I had. I had CHOP for 5 months (once every 3 weeks) and then I had my stem cell transplant on May 2, 2003. I was very lucky and was able to use my own stem cells. I went yesterday for another check up and passed my CATSCAN. With each visit I get more hopeful. I would love to talk with you a share experiences.

    Hi kymmc...I have peripheral t-cell non-hodgkins lymphoma and have undergone various chemo treatments...including Hyper-CVAD and ICE...I am also using my own stem cells for a transplant. I am very worried about going for the SCT...I hope it is not as scary as I think...:-/
  • sublime86
    sublime86 Member Posts: 3
    Hi my name is shane im 18 soon 19 and i was diagnosed with t-cell lymphoblastic Non-Hodgkin in late januruary of 05. Ive gone through 6 rounds of chemo so far out of 8 and im currently in remeission and im going to be having a bone marrow transplant soon. I was in stage 3 im pretty sure. Im doing the MD Anderson protocalor Hyper C-vad and it seems to be working extremely well. I cant say im a survivor yet but i will be and you will to with the right mind set you can do anything. email me at [email protected] sounds immatuer but im only 18 and normal. Good luck to u.
  • LarrySurvivor6
    LarrySurvivor6 Member Posts: 5
    I have survived t cell
    I have had 6 rare cancers in the last six years. I am in remission since a little over a year ago. I feel fine . I enjoy every day I am 63 with a suporting family. I caught this one early but was told this very difficult to treat. I have had parotiod, prostate, skin, two kinds of aggressive thyroid cancer and now lymphoma I forget how to pronounce. I feel good but worry over every little bump or peculiarity. Hang in there everyone. One thing I did notice when i started feeling sorry for myself I talk to God gave him my trust, I have a strong family and I have a good repore with a few Drs at cleveland Clinic.
  • LarrySurvivor6
    LarrySurvivor6 Member Posts: 5
    BADDAD said:

    MY HUSBAND HAS PERIPHERAL T-CELL LYMPHOMA. HE IS IN STAGE II. HE HAS HAS ENLARGED LYMPH NODES IN HIS CHEST.HE HAS HAD ONLY ONE TREATMENT OF CHOP. WE ARE GOING TO DANA FARBER CANCER INSTITUTE MAR. 7TH. HE JUST TURNED 50. WE ARE LOOKING FOR SURVIVORS ALSO. LET US KNOW IF YOU FIND ONE.

    Survivor
    Check out my post