Mantle Cell Lymphoma

Suki7
Suki7 Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
Hi everybody,
In 2008 I was diagnosed with NHL and did the chemo treatment, I relapsed shortly after chemo treatment. More test was done and I was diagnosed with stage IV Mantle Cell Lymphoma.
March of 2009 I got intense chemo followed by a allogeneic stem cell transplant. March of 2010 my big test (CT Scan and Bone Marrow) all came out clear. Tomorrow Dec. 8th is my next CT Scan, no bone marrow test this time. I couldn't be happier with the test results I have gotten so far, but I am so scared every time a test is to be done.
Is there anybody on here that has Mantle Cell Lymphoma? If so I would love to talk.

Comments

  • Hulsy
    Hulsy Member Posts: 11
    #2
    Mantle Cell Lymphoma
    Hi Suki,

    Yes, I have same cancer....had autologous stem cell transplant on March 4, 2010. Previous to the SCT, I had 6 rounds of intensive chemo a week at a time in the hospital....it was a rough road, but so far so good. I get re-vaccinated starting in March 2011.

    I would love to talk to you about your journey so far. I just joined this CSN yesterday and still managing my way through this...would love to start email or phone contact. I live in Michigan
  • mantlecellmantis
    mantlecellmantis Member Posts: 3
    #3
    mantle cell & fear
    i have stage 4 mantle cell. i have completed chopr.pet shows thyroid mass. lack support,am on fml from work due to post chop neuropathy.can not drive self to shands for further treatment,it is over 4 hrs away.oncologist now here only 1 wk per mo.have 2 minor children & my ex is evil.friends are quiting.feel alone-am alone.sounds like you are doing great.understand if you do not reply back.wish you the best
  • mantlecellmantis
    mantlecellmantis Member Posts: 3
    #4
    Hulsy said:

    Mantle Cell Lymphoma
    Hi Suki,

    Yes, I have same cancer....had autologous stem cell transplant on March 4, 2010. Previous to the SCT, I had 6 rounds of intensive chemo a week at a time in the hospital....it was a rough road, but so far so good. I get re-vaccinated starting in March 2011.

    I would love to talk to you about your journey so far. I just joined this CSN yesterday and still managing my way through this...would love to start email or phone contact. I live in Michigan

    isolation
    you sound great.i'm happy for you but i don't know what to do.mismanaged-wish i was not an rn then i wouldn't know.no feedback from this site-was told to go to discusion board.here twice in one day.need someone who knows how i feel.used to be so upbeat.sorry-don't want to drag you down.
  • Hulsy
    Hulsy Member Posts: 11
    #5
    mantlecellmantis said:

    mantle cell & fear
    i have stage 4 mantle cell. i have completed chopr.pet shows thyroid mass. lack support,am on fml from work due to post chop neuropathy.can not drive self to shands for further treatment,it is over 4 hrs away.oncologist now here only 1 wk per mo.have 2 minor children & my ex is evil.friends are quiting.feel alone-am alone.sounds like you are doing great.understand if you do not reply back.wish you the best

    Mantle cell & fear
    Hi, there are very few people around to discuss this disease with. You sound like you live in a rural area without much medical expertise. I am sorry to hear that. I was also diagnosed with stage 4, was treated with r-chop and hyper-c-vad--had an intense 7 mos. of treatment...7 weeks in hospital over the 7 mos. Almost died from the pneumonia I got during treatment. I never thought I'd get through this far...in fact the drs. were very surprised. I tried to be as positive as i could and did not do the research on the internet. I am extremely fortunate with the support group of family and friends. And we are 10 min. from a major cancer treatment center.

    I was very sick while going through treatment, lost hair, had neuropathy and all the bad stuff. Had the end of life discussions with the family and friends. It was a journey. I had stem cell transplant last March and will start with vaccinations this March to rebuild my immune system. It was a wretched journey, but I kept as positive as I could and joked around when I could.

    I became extremely spiritual and found that prayer and music helped soothe me. I don't know if you've ever heard of Leonard Cohen, but he is a singer and has a special prayer song that I listened to and prayed with...it is called "If it be your will." You might find it helps you to reframe your mind.

    There is so much that is out of our control....the more we try to control, the more frustrating it is. It is true, you have to "let go and let God"

    All I can say is that there is no way I would've believed I could be here today. There are better reports coming out on the treatment of MCL...I have PET/CT scans scheduled again for next month and am scared to death. But we have to take it one day at a time and enjoy all the moments we are given.

    I know you are hard against it right now....but you somehow have to allow room for positive thoughts in your life. The fear is overwhelming and can be paralizing, fight against that. Get a fighter's attitude...show your kids your will to live by setting a positive attitude. Trust me, I know how hard that is....do what you can.

    I will add you to my nightly prayer list.

    Hulsy
  • Frankz
    Frankz Member Posts: 4
    #6
    MCL
    Hi Suki,
    I received the same diagnoses as you in June of '07.
    You’re not alone in your fears. We all feel it at scan time. I'm off to the doctor today for last weeks scan results. I see the doctor every three months and scans every six. I try to stay a little ahead of them by getting my results 48 hours after the scan. So I’m not so shocked or stunned that I’m unable ask questions when I’m with the doctor. Forget the three year prognosis my doctor told me it could be two months or two years. Hope your doing well and stay positive.
  • Frankz
    Frankz Member Posts: 4
    #7
    mantlecellmantis said:

    mantle cell & fear
    i have stage 4 mantle cell. i have completed chopr.pet shows thyroid mass. lack support,am on fml from work due to post chop neuropathy.can not drive self to shands for further treatment,it is over 4 hrs away.oncologist now here only 1 wk per mo.have 2 minor children & my ex is evil.friends are quiting.feel alone-am alone.sounds like you are doing great.understand if you do not reply back.wish you the best

    MCL Fear
    You're getting it from all ends. A wellness group I joined two years ago at Gilda's Club helps me through the difficult times. I receive a lot comfort and support there. We only meet once a week for an hour and a half but we've made very strong and meaningful relationships and friendships. Cancer is an extremely difficult thing for most healthy people to really understand. Try to find a group it truly helps me.
  • flywitheagle
    flywitheagle Member Posts: 2
    #8
    I have no symptom just informed I got MCL
    I just been informed by my doctor based upon Flow sytomtry with D1 I have been diagnosed MCL, and I am only 55 with two college boys. I am expecting to do PET scan and Bone Marrow Biopsy next week. I have no symptoms, and what I am expecting ? My wife and me are scared to death - please share your thoughts thanks!
    Eric
  • flywitheagle
    flywitheagle Member Posts: 2
    #9
    I have no symptom just informed I got MCL
    I just been informed by my doctor based upon Flow sytomtry with D1 I have been diagnosed MCL, and I am only 55 with two college boys. I am expecting to do PET scan and Bone Marrow Biopsy next week. I have no symptoms, and what I am expecting ? My wife and me are scared to death - please share your thoughts thanks!
    Eric
  • lady_linda
    lady_linda Member Posts: 3
    #10
    flywitheagle said:

    I have no symptom just informed I got MCL
    I just been informed by my doctor based upon Flow sytomtry with D1 I have been diagnosed MCL, and I am only 55 with two college boys. I am expecting to do PET scan and Bone Marrow Biopsy next week. I have no symptoms, and what I am expecting ? My wife and me are scared to death - please share your thoughts thanks!
    Eric

    Where is everyone? I have so many questions.

    Aren't there any people with new posts about their journey with MCL? I was diagnosed 9/26/15. Just started cycle 3 of 8 cycles of chemo. Very reluctant to do stem cell, but am being told I'm a candidate for it as my most recent PET Scan showed no Lymph Nodes lit up. I am desperately searchhing for people to talk to about this. I hope to reach a few here. Thanks.

  • Gamble214
    Gamble214 Member Posts: 1
    #11
    lady_linda said:

    Where is everyone? I have so many questions.

    Aren't there any people with new posts about their journey with MCL? I was diagnosed 9/26/15. Just started cycle 3 of 8 cycles of chemo. Very reluctant to do stem cell, but am being told I'm a candidate for it as my most recent PET Scan showed no Lymph Nodes lit up. I am desperately searchhing for people to talk to about this. I hope to reach a few here. Thanks.

    Where is everyone?

    hello, I just joined this site. Was diagnosed May 2017. Just finished R-CHOP. How are you doing? I would love to share. 

  • Tania L
    Tania L Member Posts: 1
    #12
    Gamble214 said:

    Where is everyone?

    hello, I just joined this site. Was diagnosed May 2017. Just finished R-CHOP. How are you doing? I would love to share. 

    Diagnosed in September too!

    Hi. My husband was diagnosed with Mantle cell lymphoma stage 4 in September.  I would like to share with someone also as this cancer seems to be rare apparently. I hope you are going well after the 1st R -CHOP.  Hubby is having R-CHOP then R-DHAP alternating every 21 days. Some days are rough, but we put 1 foot in front of the other and see what the next day brings. Staying positive is a cliche but it really does help. Smile

  • Jacky2270
    Jacky2270 Member Posts: 8
    edited October 2018 #13
    Hi I have just been diagnose

    Hi I have just been diagnose with mantle b cell lymphoma. I am feamle 48 years olds. I would like to hear mre from other with same condition as me,

    lmk Jacky

  • Jacky2270
    Jacky2270 Member Posts: 8
    edited October 2018 #14
    Hulsy said:

    Mantle Cell Lymphoma
    Hi Suki,

    Yes, I have same cancer....had autologous stem cell transplant on March 4, 2010. Previous to the SCT, I had 6 rounds of intensive chemo a week at a time in the hospital....it was a rough road, but so far so good. I get re-vaccinated starting in March 2011.

    I would love to talk to you about your journey so far. I just joined this CSN yesterday and still managing my way through this...would love to start email or phone contact. I live in Michigan

    Just been diagnosed with Mantle B cell Lymphoma

    Hi Hulsy, i would love to share infor with you. I ahev just been diagnosed 3 days ago. Im scared, will have my petscan done next week wednesday,

     

    how are you doing?

    Jacky

  • Jacky2270
    Jacky2270 Member Posts: 8
    #15
    Tania L said:

    Diagnosed in September too!

    Hi. My husband was diagnosed with Mantle cell lymphoma stage 4 in September.  I would like to share with someone also as this cancer seems to be rare apparently. I hope you are going well after the 1st R -CHOP.  Hubby is having R-CHOP then R-DHAP alternating every 21 days. Some days are rough, but we put 1 foot in front of the other and see what the next day brings. Staying positive is a cliche but it really does help. Smile

    Hi Tania,  i have just been

    Hi Tania,  i have just been diagnosed with MLC. How is your husband doing so far and where did he get his treatments?

     

    Jacky

  • Jacky2270
    Jacky2270 Member Posts: 8
    edited October 2018 #16
    Gamble214 said:

    Where is everyone?

    hello, I just joined this site. Was diagnosed May 2017. Just finished R-CHOP. How are you doing? I would love to share. 

    Hi How are you doing? I have

    Hi How are you doing? I have just been diagnosed with MLC. how are you doing?

     

    Jacky

  • Jacky2270
    Jacky2270 Member Posts: 8
    edited October 2018 #17
    lady_linda said:

    Where is everyone? I have so many questions.

    Aren't there any people with new posts about their journey with MCL? I was diagnosed 9/26/15. Just started cycle 3 of 8 cycles of chemo. Very reluctant to do stem cell, but am being told I'm a candidate for it as my most recent PET Scan showed no Lymph Nodes lit up. I am desperately searchhing for people to talk to about this. I hope to reach a few here. Thanks.

    Hi Linda,

    Hi Linda,

     

    i am also scared, I have just been diagnosed with MLC.

     

    how are you dping?

     

    Jacky

  • sick brother
    sick brother Member Posts: 3 Member
    edited September 2021 #18
    Brother recently diagnosed

    Hello,

    I don't know if any of you are still active on here (aside from Becky who I have emailed back and forth with and appreciate so much!). My brother was recently diagnosed with mantel cell lymphoma and I am just looking to hear some positive from some survivors. He is only 38 and thankfully all of his organs are fine. He does have 2 children (15 and 11) who are not handling the news all that well. He is currently going through chemo weekly and blood transfusions pretty much weekly as well. Again, I would love to hear some positive from survivors as this is just a lot to handle right now. I appreciate any responses that I get and even if you don't respond but simply read this, I wish you the best. 

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