I also was diagnosed with mantle cell lymphoma stage 4 .I had 6 months of rituxin and bendomustine.I have been in remission for 3years.I have lab tests every 4 months now.Before they were every 3 months.My next labs are in a few days.I worry until I get the results.I enjoy a full and happy life.One day at a time.
I wish youall the luck on your battle .A great attitude goes along way.

Hi! PENNY,

I was diagnosed with MCL stage 4 indolent September of last year. Don't look at survivor stats, you will just make yourself sick with worry. Those stats are based on the treatments at the time, treatments have gotten better. I am currently in remission from 6 rounds of rituximab and Bendeka (Bendeka is the same as bendomustine). It was not necessarily easy to get the treatments, but it was tolerable. I thank God for my medi port (it's a device implanted in your chest for infusions. Chemo is to harsh to go into an arm vein). Things I wish someone would have told me-
*It may not be curable, but it is treatable.*having a support system is everything.
*it's okay to be angry, upset, sad and any other emotions, just don't dwell on your condition. Find hobbies, make new friends, just don't mope around having a pity party, you ain't got time for that girl!!!
*you are much stronger than the disease. You are now a warrior!!!
*Make sure you wear layers for your MRI/CATscan/Pet scan. It gets cold in there.
Bring a book or your phone to entertain yourself.
If you have to drink the radioactive solution, they all taste bad, flavor doesn't help it go down any quicker. I plug my nose, that seems to help.
*(this info is based on my experience with my protocol of rituximab and Bendeka) expect to be in the infusion center all day for the first day, take ready to eat snacks and water, bring a neck pillow, water bottles, don't forget to flavor it, water will taste horrible. Bring hard candies to help with the horrible taste you get with chemo.
*second day is just Bendeka. Make sure you start to take the nausea meds this day, the stuff they give you last about 24 hours.
*if your white blood cells start to go down expect to get Nuelasta, it's a shot to boost your blood cells. A day before the shot take Claritin, because the side effects of the shot are bone pain, I got it in my jaw bone and thigh bones.
Along with my chemo I took tumeric, alpha lopic acid, multivitamin, ashwagandha, prebiotic, and B complex. I'd like to think all these things helped me, my doctor was surprised how well I tolerated chemo. So...

I hope I didn't scare you too much, but I am on the other side of the treatments and I am blessed to be in remission.

I wish you well and peace

Rachel

I found a lump in my clavicle area in August 2023. My PCP schedule all the X-rays ultrasounds bloodwork and biopsy. By that time they knew I had a lymphoma. My PCP made a referral to an oncologist who I saw in October. That’s when I had the official diagnosis of Mantle Cell Lymphoma. I started chemo in November and finished in March 2024. After my last PET scan was when I was found told I have no evidence of disease. I started my maintenance therapy two weeks ago. Praying and keeping my fingers crossed….

I too had MCL …. I had one round ( 3 cycles) of B/R treatment and 1 round of Rituxin and hidac chemo. I’m presently have no evidence of disease. I just started on a maintenance program of Rituxin every two months for two years. I felt the same as you when I was diagnosed and was told not to be a Googler 😊. There is reason to be hopeful. I trusted my cancer team. Have faith ! Steve

keep on this site and not the internet. This experienced group can usually give you the straight scoop