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sggid
sggid Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
My husband has NHL- Mantle cell, stage 4 and is recieving Hyper C-Vad wiht methotrexate and Ara-c every 2 weeks...anyone out there with same diagnosis. He may also have a bone marrow transplant. Chemo treatments have been getting progresively harder. Would love to talk to someone who has been through this. thanks

Comments

  • candlelite
    candlelite Member Posts: 2
    #2
    Hi sggid, My husband has just been diagnosed with Mantle cell lymphoma. We are just starting our journey. He had a bone marrow biopsy last week and now we are waiting to hear from that. I just wanted to let you know your not alone. I have searched for someone to talk to, but to no avail. Maybe you are my angel. He hasn't started any treatments yet. He has to go see a Dr. at another hospital first that has more experience with this type of lymphoma. I try not to let it consume my every thought, but sometimes it's hard. I keep searching and searching. For what I am not really sure. I feel like I need to know all I can to help him make any sense out of this at all. He has been so brave. They also have talked to us about a bone marrow transplant. That really scares me. But I know God will go before him and lead the way. I wish you and your husband all the best and I pray right now He will give you peace and comfort to endure this day, today. Godspeed.
  • ronald
    ronald Member Posts: 4
    #3
    my husband has mantle cell and has been told he needs R hyper cvad treatment. It sounds so scary and devestating. Please let us know how your husband is doing and what he is going through with these treatments. This disease seems to be a nightmare that we cannot wake up from.
  • ronald
    ronald Member Posts: 4
    #4
    candlelite said:

    Hi sggid, My husband has just been diagnosed with Mantle cell lymphoma. We are just starting our journey. He had a bone marrow biopsy last week and now we are waiting to hear from that. I just wanted to let you know your not alone. I have searched for someone to talk to, but to no avail. Maybe you are my angel. He hasn't started any treatments yet. He has to go see a Dr. at another hospital first that has more experience with this type of lymphoma. I try not to let it consume my every thought, but sometimes it's hard. I keep searching and searching. For what I am not really sure. I feel like I need to know all I can to help him make any sense out of this at all. He has been so brave. They also have talked to us about a bone marrow transplant. That really scares me. But I know God will go before him and lead the way. I wish you and your husband all the best and I pray right now He will give you peace and comfort to endure this day, today. Godspeed.

    candelite,

    my husband is considering R hyper cvad or a genesence trial (which is completely experimental). We still haven't decided what to do and he was diagnosed in March. Has your husband started treatment yet? We live on Long Island in New York and we aren't sure where he should get this treatment - Rhypercvad. Have you found a great hospital? This disease seems to raise more questions than answers. Hope to hear from you soon. Thanks
  • ronald
    ronald Member Posts: 4
    #5
    sggid - how is your husband doing after his hyper cvad treatments. We are considering the same route for mantle cell lymphoma and would like to hear about his experience, recovery and outlook. please reply if you are able because we are scared and confused. thank you
  • milliedwn
    milliedwn Member Posts: 2
    #6
    Hi we just found out my grandma has got NHL mantle cell. They have just started chemo. They did a bone marrow biopsy and found it in her bone marrow as well. She is not a canidate for a transplant im not sure why. I do not understand why and I dont understand this whole thing. I guess it is all too much at one time. I have searched and searched for someone with the type of NHL and finally my search has lead me to you. I thank god I have found someone. Maybe you can help me to understand this whole thing. God bless you and your family.
  • Dale66
    Dale66 Member Posts: 1
    #7
    milliedwn said:

    Hi we just found out my grandma has got NHL mantle cell. They have just started chemo. They did a bone marrow biopsy and found it in her bone marrow as well. She is not a canidate for a transplant im not sure why. I do not understand why and I dont understand this whole thing. I guess it is all too much at one time. I have searched and searched for someone with the type of NHL and finally my search has lead me to you. I thank god I have found someone. Maybe you can help me to understand this whole thing. God bless you and your family.

    Dear MCL family. Yea, we're a new family and there's nothing like family and God to meet any challenge. I'm two months into this, have begun R-CHOP and so far doing well. There is much hope out there, but read and be your own advocate. I've learned MCL can be very personalized. I'm CD5 negative, no symptoms, surely atypical. With that and age 66, experts recommended against HyperCVAD, which people under 60 are better able to tolerate. After chemo, I hope to have a vaccine made from my own cancer. They hold great hope for vaccines. There are other new drugs coming. Hang in. Try to get back to regular living with the big C. It's not easy, but day by day it gets better.
  • Luckyangel815
    Luckyangel815 Member Posts: 1
    #8
    milliedwn said:

    Hi we just found out my grandma has got NHL mantle cell. They have just started chemo. They did a bone marrow biopsy and found it in her bone marrow as well. She is not a canidate for a transplant im not sure why. I do not understand why and I dont understand this whole thing. I guess it is all too much at one time. I have searched and searched for someone with the type of NHL and finally my search has lead me to you. I thank god I have found someone. Maybe you can help me to understand this whole thing. God bless you and your family.

    Hello. I just found out that my mother has Stage IV MCL - a bone marrow transplant is not possible and she will be starting CHOP with Rituxan next month. If anyone can give me some incling of how to help her get through this I would greatly appreciate the support. I have been praying for all of you and your families - Best of luck!

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