Anyone out there with this condition
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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.
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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.
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!
I do not know if I have the p53 mutation. Should I ask?
I guess it depends on how involved you want to be in your treatment. The p53 mutation affects some MCL patients and it makes the disease more difficult to treat. It usually requires a non-chemo treatment. My experience is that not many general onc docs look for this and usually it is something that a doc who has a very high MCL patient load (which is not many) is aware of and will treat correctly. If you are interested I can post a link about the mutation or you can Google it.
Live in Michigan, have had this for almost 5 years
Found out in February 2016 I had MCL. I'm from Michigan and felt very tired while Deer hunting. I'm 74 and have been on remission for 3 years. As I text I'm getting my retuxin I fusion.
Has anyone had any skin problems. My skin after a year on retuxin got small little bruises which got much bigger. My skin looks like a 100 year old man which now is very thin. Very easy to cut or tear. Have to take medical kit when I travel.
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
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