Mantle cell lymphoma Hope

[Tginger61]

My partner was diagnosed 6 years ago .Thanks to the improvement in treatment he is still here. He was also diagnosed with Hodgkin's lymphoma last year and again after treatment given the all clear. I wanted to say that there is hope .treatment is improving all the time .

[Reem-ayoub]

This is so comforting to know. My husband is undergoing treatment for mantle cell to be followed by stem cell transplant. So far so good. He is half way through BR. Wishing your partner lifelong remission. 🙏🏼

[moors3029]

My husband was dianoised in 2011 with Mantel Cell. Reem-ayoub and I have talked before as her husband had Mantel Cell also. Gary did R-chop in 2012 and then a stem cell in 2013 but relapsed a year ago. Did BR from May to Nov. and had a Pet scan and bone marrow biopsy in Dec. and he is clear and in remission again. We are in Florida for 4 months and have an appointment with a doctor at Moffit Cancer Center the 10th of Jan for another opinion. Will let you know what info they give us. Moffit is ranked #6 in the country and has 14 lymphoma doctors. I'm glad your partner is doing well and yes they have new treatments coming out all the time. We were told there infusions will be a thing of the past as it will all be done by pill. Good luck to your partner and also to Reem-ayoub's husband. Sincerely, Paige

[Reem-ayoub in reply to moors3029]

Hi Paige! Thanks for your thoughtful wishes. Wondering how your appointment went with your new doctor at Mofitt. We met up with the transplant doctor yesterday and were very pleased with her compassion and level of expertise. We also met the nurses in charge of the unit. All nice and ready to tackle all issues that may arise. As wierd as this may sound, we are excited to get through this procedure and into remission. The doctor is very hopeful about the future of MCL and the future treatment options. So we begin our year with gratitude and hope! Looking forward to hearing all about your visit.

Have a great day!

Reem

[moors3029 in reply to Reem-ayoub]

Hi Reem, We are going back on the 30th to have an appointment with the hematology/oncology dept. Will see if they want Gary to go on a maintenance program. In the meantime they told us about a new transplant procedure that is in clinical trial called Car-T. They take your T cells and re-engineer them to recognize and kill the cancer.and then put them back in your body. A targeted therapy. It sounds promising but is down the road because it hasn't been approved as yet. Hoping your husband is doing well. Let me know when he decides to have the transplant. Would he be using his own cells?

[Reem-ayoub in reply to moors3029]

Hi Paige. Yes Raja will be using his own stem cells. We do not have an exact date yet. All I know is that he finishes his last cycle of BR mid March. So I guess he has to wait and get retested before we can set a date. I imagine end of April beginning of May. Did your husband experience weight loss during treatment? Raja is losing weight and he is concerned. He is experiencing some nausea so I told him it's normal to eat less. Will try to get him on a calorie dense nutritious regimen over the next week. Hope that works. He will be having a mid treatment PET/CT scan in two weeks so hopefully that should tell us if we are on the right track. Thanks for asking and hope all is well with you guys. Reem

[moors3029 in reply to Reem-ayoub]

Hi Reem, Gary didn't lose any weight this time but he did the other time he had chemo. They had Gary wait 3 months in-between the last chemo and the stem cell. Wishing Raja well and a good stem cell transplant. We go to Moffit the end of the month to talk to the hematology group and I'll let you know what they say.

Paige

[Elseas in reply to moors3029]

Sorry to hear about your husband, but I can tell you that I am a MCL patient at Moffitt. The best! They are doing a lot of research in MCL which has already translated into new, less invasive therapies. Let me know how your appointment goes.

[Janekite2015]

Nice of you to take the time to share a message of hope! I was MCL found in my intestine 5 years ago. Still in remission!

[Judyhoneycomb]

Thank you and may he continue to stay well....

[Judyhoneycomb]

continued thoughts for healing and staying in remission...