Anyone else have Mantle Cell Lymphoma?

Hello Swede. I don’t have your cancer, but can certainly identify with unpleasant side effects. Over several years of treatment I have had to address that issue with both my local oncologist and Mayo Clinic hematologist/oncologist. On all occasions they had suggestions for options of treatment. Have you had options presented to you?

I do not know if I have the p53 mutation. Should I ask?

Hello @roberthall0452, welcome to Connect. I would like to introduce you to another new member, @harvie, who also recently posted about being diagnosed with mantle cell lymphoma. @roberthall0452, if you are comfortable sharing a bit more, how are you doing with this diagnosis? Has there been any discussion of a treatment plan?

I live in Lansing Mi and go to the Sparrow Hospital Cancer Center. I know this cancer is rare but in a city of 159,000 I can hardly find anyone else with my cancer.
I've had this stage 3 cancer for over four years . Had several side effects from my infusions. Looking for other people with this cancer

Hello @harvie, I have been treated and am now in remission. Looking for anyone with this condition to share notes. I just relocated to Az from the east coast and would like to find a doctor so I would not have to fly back and forth. Any info would be helpful.

Thanks for the invite. I was diagnosed in 2/2014 at age 69. My disease presented in the bone marrow and kidneys. I had no symptoms. Kidney presentation is very rare. I had chemo and was in remission after 3 monthly treatments. I followed that with two years of Rituxan. I spent 3 years on dialysis and was able to come off after many lifestyle changes -. and without a transplant (a miracle). At the moment I am in remission. I go to MD Anderson for my disease. I came here because I still have low kidney function and am looking for ways to improve.

Hello lottajoy,
My Experience: I was diagnosed with MCL in 02/2016.
I was admitted to the hospital with a blood platelet count of 20 after feeling fatigued. My treatment consisted of 5 days in hospital with chemo each day then I was released and had chemo once a week for 8 weeks. The chemo consisted of Rituxin and another chemo that I don't recall, looking for the info but cannot put my hands on it but this treatment worked and I have been in remission for 18 months. I recently went into relapse and am now on Imbruvica and it is showing good results. I am fortunate that insurance is covering this drug because it is very expensive. I did not have any trouble taking the chemo which seemed like a walk in the park when comparing it to the radiation I experienced in 2013 for esophageal cancer which is completely behind me. Please make sure you have a doctor that you feel very good about, it took two trys for me. Look forward to seeing where you go with this and will be watching for you. Best Wishes!
I am a 74 year old male in otherwise good health and I am active in tennis and working out at the gym, plus I watch what I eat.

My chemo treatment is 2-part: A and B. They alternate every 3 weeks until I have had 3 of each. Part A is done as an out-patient but takes 7-9 hours. I have to stay in the hospital for 3 days when I have Part B. I am not a patient at Mayo, so I don't know how they do it.

Part A:
Cyclophosphamite
Doxorubisin
Viacristine
Rituxin

Part B:
Cytarabib
Rituxin

University of Wisconsin Hospital. By the time the cancer was found, there were a lot of lymph nodes in my abdomen and chest affected. He said since I am young (58) and in good health, they were prescribing an aggressive treatment.

Confused. I've been on retuxin for 3 1/2 years. I've had many side effects. Esp. With my skin.