Update on Mantle Cell

JoeCostello
JoeCostello Member Posts: 19 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I haven't posted in a while although I've been here, just silent. I wanted to give you all an update before I leave in a week on a treatment of Mantle Cell of which I will be taking part. MD Anderson is hosting a clinical trial in Houston for patients that are newly diagnosed and untreated. The first part of the trial involves taking Ibrutinib along with weekly infusions of Rituximab. This will hopefully put folks in complete remission after a fairly short time (2-4 months). It can take longer but hopefully the shorter time will take place. The trial then conosolidates the treatment with alternating hyper CVAD and Methotrexate/Cytarabine chemotherapy. This will hopefully knock this beast out for a number of years. I have been seeing Dr Michael Wang there and he seems fairly confident that because my Mantle Cell is on the borderline between indolent and aggressive that I will get close to 10 years before a relapse. Then hopefully some newer treatments for relapsed Mantle Cell will have come down the pipeline to push it out further. I know I used the word hopefully a lot but since this is a clinical trial, until the final results are out its hard to know. I do know that Dr Wang has been working on Mantle Cell for a number of years and I have a lot of confidence in him. The nice thing about this treatment is no stem cell transplant. I really did not want to go through that if possible. This offers a comparable outcome without a lot of the toxicity. He did say that down the road that it could still be done. I am hopefull that it will not be necessary. I will post from time to time to give updates as to how the trial is going. This is going to be quite an ordeal to leave home for a while and live in Texas, but God has seen us through thus far and I have no doubt he will continue. Please if you have any questions you can ask here on the open forum or privately email me any time.

Comments

  • illead
    illead Member Posts: 884 Member
    #2
    Hi Joe

    Thanks again for the information.  We have so much to be optimistic about and as we said, we are so thankful for the dedication of those who are working so hard in their research.  We are in very good hands and the inroads being made are of course extended into the whole lymphoma field.  We will stay in touch during your journey.

    Our best to you and your family,

    Bill & Becky

  • robindawn
    robindawn Member Posts: 1
    #3
    Hi. I am new to this site.

    Hi. I am new to this site. First of all, best of luck with your treatment. Hope everything goes well.

    I was diagnosed with MCL 3/2015. Mine supposedly is also an indolent type. I have 5% in one lymph node in my neck and 6% in my bone marrow. My lymphocyte counts vary from 4.5 to 8.5...I was also given two tests to see if I fell into the indolent category...a HIGV test that came back 3.8 and a K167 test that came back 10. I think I may be borderline indolent...we are presently doing watch and wait. Has anyone else had those tests...are my blood counts normal for indolent....and how long can you usually stay in that category...months....years???  I assume I eventually will be having some type of treatment down the line. Any insight anyone can offer would be greatly appreciated. Thanks.

    Dawn

  • OO7
    OO7 Member Posts: 281
    #4
    You are in my prayers, speedy

    You are in my prayers, speedy recovery and best wishes.  I'm glad you posted and glad your at MD Anderson.

    Keep us posted.

  • Unknown
    Unknown
    #5
    Hang in there man. You are

    Hang in there man. You are doing great!

  • OscarDad
    OscarDad Member Posts: 1
    #6
    MCL remission

    Went to Dana Farber in January and learned I had mantle cell lymphoma but to watch and wait. Had lumps in eyelids which they said had nothing to do with it. Discovered these lumps were indeed lymphoma so went to MD Anderson and Dr. Michael Wang who has done tons of research on this. He started treatment immediately and I finished his regimen in RI. After 4 cycles I was in total remission. Did two more cycles. Now wonder what to do going forward. Want Dr.Wang's recommendation as to what to do next. If you have this rare cancer, get to Houston as soon as possible.

  • JoeCostello
    JoeCostello Member Posts: 19 Member
    #7
    robindawn said:

    Hi. I am new to this site.

    Hi. I am new to this site. First of all, best of luck with your treatment. Hope everything goes well.

    I was diagnosed with MCL 3/2015. Mine supposedly is also an indolent type. I have 5% in one lymph node in my neck and 6% in my bone marrow. My lymphocyte counts vary from 4.5 to 8.5...I was also given two tests to see if I fell into the indolent category...a HIGV test that came back 3.8 and a K167 test that came back 10. I think I may be borderline indolent...we are presently doing watch and wait. Has anyone else had those tests...are my blood counts normal for indolent....and how long can you usually stay in that category...months....years???  I assume I eventually will be having some type of treatment down the line. Any insight anyone can offer would be greatly appreciated. Thanks.

    Dawn

    Welcome to the site

    I am sorry this introduction is by this manner. Yes indeed you are in the indolent category. The KI67 is indolent up to 30% (mine is at 30%). I don't know how long you can go without treatment but I have read of cases that do not require treatment for many years. I personally would consult one of the experts in Mantle Cell. It is hard to travel far if you have to but it is well worth it to get the straight scoop since this disease is such a sneaky rascal. There are several centers across the US that have this caliber of personnel. MD Anderson, Dana Farber, Memorial Sloan Kettering to name a few. I'm sure that folks on this board can also name several more. I don't know for sure about the lymphocyte count and the HIGV (don't even know what that is for sure) test. Please keep us informed as to your progress.

  • JoeCostello
    JoeCostello Member Posts: 19 Member
    #8
    OscarDad said:

    MCL remission

    Went to Dana Farber in January and learned I had mantle cell lymphoma but to watch and wait. Had lumps in eyelids which they said had nothing to do with it. Discovered these lumps were indeed lymphoma so went to MD Anderson and Dr. Michael Wang who has done tons of research on this. He started treatment immediately and I finished his regimen in RI. After 4 cycles I was in total remission. Did two more cycles. Now wonder what to do going forward. Want Dr.Wang's recommendation as to what to do next. If you have this rare cancer, get to Houston as soon as possible.

    Glad you are doing well

    I hope to report back in about 6 months that I have responded as well. Good luck and god bless.

  • JoeCostello
    JoeCostello Member Posts: 19 Member
    #9
    OO7 said:

    You are in my prayers, speedy

    You are in my prayers, speedy recovery and best wishes.  I'm glad you posted and glad your at MD Anderson.

    Keep us posted.

    Good to hear from you

    You are a special person. Thanks for all your encouragement.

  • JoeCostello
    JoeCostello Member Posts: 19 Member
    #10
    unknown said:

    Hang in there man. You are

    Hang in there man. You are doing great!

    Thanks GKH

    I have a lot to live for so I will give it the good fight.

  • mrsspies
    mrsspies Member Posts: 3
    #11
    JoeCostello said:

    Glad you are doing well

    I hope to report back in about 6 months that I have responded as well. Good luck and god bless.

    Ask to be connected

    At MD Anderson, there is a program run by volunteers that will connect you with someone who has had what you are going to go through. We found this extremely helpful. Our friend told us of the difficulties he encountered as he went through his treatment. We didn't have the same issues as he had, but we'd be happy to answer any questions you might have. The staff at MD Anderson is top notch. Eveyone knows what they are doing and they do it well. Room service is the best! I stayed in the room with my husband the entire time he was there.

  • abcma
    abcma Member Posts: 24
    #12
    illead said:

    Hi Joe

    Thanks again for the information.  We have so much to be optimistic about and as we said, we are so thankful for the dedication of those who are working so hard in their research.  We are in very good hands and the inroads being made are of course extended into the whole lymphoma field.  We will stay in touch during your journey.

    Our best to you and your family,

    Bill & Becky

    Mantle Cell Variant

    My friend, Jon, was treated with Bendmustin and Rixtuxin for MCL.  He just had a CT scan after his third chemo session, and the oncologlist said that the results indicated that he had a complete response.  She said they would stop treatment after 5 sessions instead of the 6 which he was scheduled for originally.  He will then be on Rituxin maintenance.  She mentioned that he had a CLL variant of Mantle Cell.  i've searched the Internet and couldn't find any information about this.  i should have asked her to clarify, but I was not thinking clearly.  Does anyone have any information about this variant?

    Sorry if I posted this in the wrong place....

    Bev

     

  • john1947
    john1947 Member Posts: 14
    #13
    abcma said:

    Mantle Cell Variant

    My friend, Jon, was treated with Bendmustin and Rixtuxin for MCL.  He just had a CT scan after his third chemo session, and the oncologlist said that the results indicated that he had a complete response.  She said they would stop treatment after 5 sessions instead of the 6 which he was scheduled for originally.  He will then be on Rituxin maintenance.  She mentioned that he had a CLL variant of Mantle Cell.  i've searched the Internet and couldn't find any information about this.  i should have asked her to clarify, but I was not thinking clearly.  Does anyone have any information about this variant?

    Sorry if I posted this in the wrong place....

    Bev

     

    This Might Help

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3148905/

  • abcma
    abcma Member Posts: 24
    #14
    john1947 said:

    This Might Help

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3148905/

    Mantle Cell Variant

    John.....Thank you very much.  That was a very helpful article.  I printed it and will take it when we see her for the next appointment. I was puzzled because the article seemed to indicate that this was an indolent form.  His oncologist said his MCL was neither indolent nor agressive, but was somewhere in between.  

    Thank you again.  I really apreciate your help

     

  • john1947
    john1947 Member Posts: 14
    #15
    abcma said:

    Mantle Cell Variant

    John.....Thank you very much.  That was a very helpful article.  I printed it and will take it when we see her for the next appointment. I was puzzled because the article seemed to indicate that this was an indolent form.  His oncologist said his MCL was neither indolent nor agressive, but was somewhere in between.  

    Thank you again.  I really apreciate your help

     

    Another article of interest

    When my first blood work came back abnormal everything looked like CLL, all the markers indicated CLL.  It was not until I had a bone marrow bioply that MCL was found. What is interesting is that I do have MCL but I also have a CD23 subset marker.  The following link could also provide insite for you.  MCL has many variations it is not a one size fits all.

    http://www.clltopics.org/PI/MCLWolf.htm

  • abcma
    abcma Member Posts: 24
    #16
    john1947 said:

    Another article of interest

    When my first blood work came back abnormal everything looked like CLL, all the markers indicated CLL.  It was not until I had a bone marrow bioply that MCL was found. What is interesting is that I do have MCL but I also have a CD23 subset marker.  The following link could also provide insite for you.  MCL has many variations it is not a one size fits all.

    http://www.clltopics.org/PI/MCLWolf.htm

    Mantle Cell Variant
    John....Thanks again for the the informative article. I printed it as well.

    Jon responded well to the Bendamutine/Rituxin combination, and according to the CT scan results, he had a complete response. He will continue with Rituxin for maintenance following his last treatment.

    Is this a recent diagnosis for you? What treatments have you had?

    Bev
  • john1947
    john1947 Member Posts: 14
    #17
    abcma said:

    Mantle Cell Variant
    John....Thanks again for the the informative article. I printed it as well.

    Jon responded well to the Bendamutine/Rituxin combination, and according to the CT scan results, he had a complete response. He will continue with Rituxin for maintenance following his last treatment.

    Is this a recent diagnosis for you? What treatments have you had?

    Bev

    Bev,
    My diagnosis for MCL was

    Bev,

    My diagnosis for MCL was November 18th.  I am on RChop first treatment was December 1st.  I had 3 small lymphnodes about 1cm each in neck, they are gone.  My WBC was 50,000 day of treatment and it was checked on Tuesday and was down to 13,000.  Blood work showed vast improvement all the way around with the exception on platelets which are 58, this is due to the spleen.  I am glad to hear about your friend, hope I am as lucky or blessed. 

    John

  • abcma
    abcma Member Posts: 24
    #18
    john1947 said:

    Bev,
    My diagnosis for MCL was

    Bev,

    My diagnosis for MCL was November 18th.  I am on RChop first treatment was December 1st.  I had 3 small lymphnodes about 1cm each in neck, they are gone.  My WBC was 50,000 day of treatment and it was checked on Tuesday and was down to 13,000.  Blood work showed vast improvement all the way around with the exception on platelets which are 58, this is due to the spleen.  I am glad to hear about your friend, hope I am as lucky or blessed. 

    John

    My Diagnosis for MCL
    John.....I posted a comment earlier, but don't see it in the discussion. I hope that you will be both lucky and blessed and please continue to post on your treatment and progress. My thoughts and good wishes are with you, and I'm crossing my fingers as well to cover all bases.

    I subscribe to this list serve. You may be familiar with it, but I have found it to be very informative

    MANTLECELL@LISTSERV.ACOR.ORG

    May you have good fortune and good health!!
    Bev

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