Mayo Clinic Connect
Anyone out there with this condition
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?
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 was recently diagnosed with Mantle Cell Lymphoma and would appreciate hearing from anyone who is knowledgeable on this topic.
Liked by Nancy, Volunteer Mentor
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Hi, @lottajoy. I wanted to let you know I moved your post to this existing discussion on mantle cell lymphoma to put some of the discussions on this topic in the same place and also so that you could meet @roberthall0452 @harvie. I'd also like to introduce you to @1nan @maxwell123 @travelgirl @lynnkay1956. I trust that they will have some helpful input for you with your recent mantle cell lymphoma diagnosis and will provide some support.
Has your doctor made recommendations on a treatment plan, @lottajoy?
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.
Liked by Justin McClanahan, Lisa Lucier, Connect Moderator
Another reason for showing up here is that when the time comes for another treatment, I want additional guidance on the type treatment that is least likely to impact my sick kidneys.
I noticed several asking for more information. There are many Facebook groups that may provide information. The absolute best is acor.org. You will need to register for the Mantle Cell Lymphoma group. There are many knowledgeable folks their who will always be glad to help. It is another great and helpful resource.
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.
Liked by Justin McClanahan
Thanks for sharing
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.
Where are you treated? From your description, your treatment is called R-HYPER CVAD. The protocol is pretty much the same for all centers. The treatment is pretty aggressive and my guess is that by the end you will feel the effects. There are many new "immunothereapy" drugs. Do you know why your doctor chose this?
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.
Liked by marvinjsturing
From what I have read (and I spend a good bit of time at it), that is a good center. The protocol is a standard protocol for someone your age. I would suggest at your next relapse that you go to a national center for a good second opinion. MCL is pretty rare and there are very few national experts (probably less than 10) and there is no one single "standard" protocol. Much is based on your diagnostics. Do you know if you have the p53 mutation?
By the way, there are several Facebook private groups for MCL and a listserv site that is excellent. I'm not a fan of FB even though I monitor what they talk about. The absolute best site for MCL information is acor.org. You will need to register for the Mantle Cell category when you get there. You will learn from many that have been dealing with MCL for years, most very successfully, and they are there to exchange medical information — not necessarily whine and complain (FB). I believe you will find it to be helpful. Of course, you need the best doctor and center you can find but you also probably want to learn all that you can about the disease so that you can become your own advocate. No one will advocate for you like YOU. Good luck.
Thank you, so much, maxwell123!
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