Anyone else have Mantle Cell Lymphoma?

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

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.

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 @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.

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

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?

Hi @sweede536, you'll notice that I moved your message to this existing discussion about Mantle Cell Lymphoma. I did this so that you can connect with members @roberthall0452 @lottajoy and @maxwell123, who also have this rare cancer.

Swede, you mention that you've had the cancer for 3 years, but are experiencing unpleasant side effects from the Rituxan infusion. I'd also like to tag @1nan and @becsbuddy on this discussion as they may have some thoughts to share about the infusion side effects. How long have you been on Rituxan? Great to hear that you're in remission.

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.