Newly diagnosed MCL

Aezweifel
Aezweifel Member Posts: 2
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi there.  My husband (47 years old) was just diagnosed with Mantle Cell Lymphoma. We are waiting on PET scans and staging, but I read it's usually advanced.  It all started with a swelling in his upper eyelid.  I am terrified of this and the doc has shared no cure, only treatment. He has no other symptoms, and I am not sure if this is a good of bad sign.

 

I am terrified because his is in his eye, that it is super fast and aggressive.  I have also read so many words of hope and encouragement.  This board has kept me going these past few days.

 

We live in Columbus, Ohio and I read that the James is one of the best. If anyone has any advice or experiences, I need to hear them. Thank you all. 

Comments

  • PBL
    PBL Member Posts: 366 Member
    edited October 2020 #2
    Try Becky (user name: illead)

    I haven't seen her post lately, but you might try sending her a PM.

    She has been a member for several years, and is generally very kind and willing to help. Her husband, Bill, is the one with MCL. 

    As regards treatment facilities, all I can say is that a university hospital that is on the NCI Designated Cancer Care Centers list (as is the James), is probably your best bet.

    Best of luck to you.

  • po18guy
    po18guy Member Posts: 1,465 Member
    edited October 2020 #3
    Hard to believe but...

    lymphoma is rarely an emergency. It is quite often found at late stage. MCL can be with slow or fast growing. If there is good news, the fast growing (aggressive) types are more susceptible to treatment. I would go to James in a heartbeat. They are NCI certified, have the brest and brightest, cutting esdge technology and up to the minute data regarding advanced treatment. MCL is a B-Cell Lymphoma and the B-Cell types are well known and treatment is normally quite effective. If you have been to the Lymphoma Research Foundation website, you are well-versed. If not, here is their data sheet an Mantle Cell Lymphoma: https://lymphoma.org/wp-content/uploads/2019/08/LRF1702-MantleCellLymphomaFS_D3V4.pdf  

  • Nellie4579
    Nellie4579 Member Posts: 20
    edited October 2020 #4
    Aezweitel,

    Sorry to hear of your husbands diagnosis.I have indolent non hodgkins mantle cell lymphoma and am being treated at the James in Columbus as well. It is an awesome place with great doctors, my Doctor is also a research scientist and in charge of my clinical trial. I was diagnosed August 2017 I started chemo in November, the chemo was called RCHOP. That was in Mansfield Ohio. I relapsed a year and a half later and was sent to the James where they put me on a clinical trial with ibrutinib and palbociclib in February. It is working so far and is much less harsh than chemo. It is very treatable but you have to deal with biopsies, pet scans and some harsh drugs. Your husband is young I think he is in the best hands at the James. Can you tell me who his doctor is?

  • Aezweifel
    Aezweifel Member Posts: 2
    edited October 2020 #5
    Nellie4579 said:

    Aezweitel,

    Sorry to hear of your husbands diagnosis.I have indolent non hodgkins mantle cell lymphoma and am being treated at the James in Columbus as well. It is an awesome place with great doctors, my Doctor is also a research scientist and in charge of my clinical trial. I was diagnosed August 2017 I started chemo in November, the chemo was called RCHOP. That was in Mansfield Ohio. I relapsed a year and a half later and was sent to the James where they put me on a clinical trial with ibrutinib and palbociclib in February. It is working so far and is much less harsh than chemo. It is very treatable but you have to deal with biopsies, pet scans and some harsh drugs. Your husband is young I think he is in the best hands at the James. Can you tell me who his doctor is?

    We do not have one yet. We

    We do not have one yet. We are transferring the case to them now. Waiting on PET scan first.  

  • Nellie4579
    Nellie4579 Member Posts: 20
    #6
    Aezweifel said:

    We do not have one yet. We

    We do not have one yet. We are transferring the case to them now. Waiting on PET scan first.  

    Oncologist at the James

    I would like to recommend Dr. Kami Maddocks to you, she was recommended to me by someone who spoke very highly of her. She specializes in Lymphoma. I would be glad to answer any questions you may have about my experience with the James or Mantle cell lymphoma. The only symptoms I had was swelling in my neck and weight loss so the diagnosis kind of threw me for a loop. I have always tried to keep a positive attitude but you are always going to have those days when you just want to escape from reality but you keep plugging along, life is so worth it! My PET scan showed multiple tumors in my neck and also my diaphragm, armpit and my scalp(which didn't show up on the PET). It responded well to chemo except for the one in my thyroid, it shrunk but it has remainned stubborn. I only had one bad experience at the James and that was when I was having a biopsy of my thyroid and voice box. The surgeon seemed rushed and wasn't nice to her nurses. She didn't give me enough time for the area to become numb before she started. Her name is Joici Job. If he needs another biopsy I would ask for a different surgeon. I will be down there for another PET scan and Doctor's appt. next month. I wish you both well on your journey.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #7
    PBL said:

    Try Becky (user name: illead)

    I haven't seen her post lately, but you might try sending her a PM.

    She has been a member for several years, and is generally very kind and willing to help. Her husband, Bill, is the one with MCL. 

    As regards treatment facilities, all I can say is that a university hospital that is on the NCI Designated Cancer Care Centers list (as is the James), is probably your best bet.

    Best of luck to you.

    Ilead

    "Roger" what PBL said regarding MCL.    A real wealth of MCL information.   PM is basically a CSN form of internal e-mailing.

     

  • illead
    illead Member Posts: 884 Member
    edited October 2020 #8
    Hi again

    I saw your PM and answered you back before I saw this thread, so I know you will be in good hands at the James. I am so happy about that.  You are doing all the right things, don't worry, they will take good care of you and your husband and please keep us updated.

    Hope we have been able to ease your fears,

    Becky

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