Hello everyone! I am new to these pages but so happy to have found this board! My husband was diagnosed with mantle cell lymphoma in november. Because they found a minute trace in his bone marrow they have put him at Stage 4 which literally scared me to death until our doctor at Sloan-Kettering told us how lymphoma is staged for treatment. Right now, per the doctor, we are doing the "watch and wait" thing, or as I call it, watch and worry. Next appointment at Sloan is April 10 for a PET and CAT scan. I am already freaking out....almost like I have no control over the fear. The doctor said he could stay at this stage for years but that when it does require treatment, he will have to have a stem cell transplant.... or as doctor says...go straight for the big guns. Anyway, I am so sorry for rambling. I know mantle cell lymphoma is rare and incurable.....the statistics terrify me. Also have noticed the last few weeks that my husband is very tired.....not sure if this is depression or the lymphoma started to rear it's ugly head even more. Has this happened to anyone else....depression, fatigue, etc? Thanks for listening.
Thank you Eileen! I think you are right about this site being a blessing!! I was so stressed out yesterday when i found this site yesterday. I went to bed feeling a little better. Knowing that you are not alone is such a help in dealing with cancer. I will pray for you & your husband. Keep faith it will getyou through this!
I was diagnosed with Mantle Cell Lymphoma back in July 2008. I was 39 at the time with 3 kids and one on the way. I was stage 4B and required immediate treatments as it was in aggressive mode. I did go through the big guns. As of last June, I've been in remission for 2 years. That was the date of my stem cell transplant (June 2009).
As you educate yourself with the treatment options and the disease itself. The current best course is to do nothing while it is in dormant mode (not the proper terminology, but accurate description). Once it activates, you will need to go through the chemo and the stem cell transplant. So keeping an eye on it is important.
My treatments consisted of R-CHOP every three weeks for 6-8 sessions (it was 6 in the end), followed by autologous stem cell transplant. I am young so they went with the aggressive treatment which gives the best results.
Don't let the diagnosis get to you. There's no point in rushing into the treatments if you don't need to. Treatments are no fun.
If there are any questions you have from a patient point of view, let me know.
Hi Raft, thank you so much for your response. I am so very happy that you are in remission....I can't imagine how difficult this must have been for you with young children and another on the way!
The "watch and wait" option is really getting to me and to Bill (my husband's name). The closer it gets to his April 10 appt at Sloan, the worse I feel. He is a nervous wreck but I'm trying to be the strong one and be optimistic and upbeat. The drs. at Sloan are going straigtht for chemo and stem cell when treatment becomes necessary so any info as to what we can expect regarding the treatments would be much appreciated. I do not want to be intrusive in any way but whatever info you can give would be great. I am having a really hard time posting here.....for the last few weeks it just disappears. I'm hoping this one posts. Again, my sincere thanks to you for responding!
I understand how "watch/wait" can be nerve wracking, but it's likely the best thing. Here's my non-medical expert take on it: Mantle Cell is considered "treatable, but not curable". All the research is very promising, but they don't quite have it licked. So the way I see it:
1) the treatments are body damaging, there are only so many you can handle
2) the treatments will reset the disease to "zero"
Why would you want to reset the disease when it's at 40% and dormant, or wait for it to be aggressive and closer to 80%? Technically, one you reset it to zero, It will go to dormant but it will not be cured and will start rising again.
Here are some links to updates on the treatments of the disease. They mostly agree on all points, including watch/wait. Listen to the podcasts. They review the current progress for the treatments of the disease and they field some questions from patients or other listeners.