Mantle Cell Lymphoma

Posted by roberthall0452 @roberthall0452, Jan 29, 2019

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?

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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.

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@maxwell123

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.

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Thank you, so much, maxwell123!

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@maxwell123

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?

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

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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.

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Live in Michigan, have had this for almost 5 years

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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.

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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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@sweede536

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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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.

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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?

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@1nan

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?

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Just the same infusions. Retuxin.

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@1nan

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?

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One side effect is my hands and arms break out in small red blue Mark's then get hudge. Sometimes my veins even blow. I'm 74 but my skin looked like I was 40 when I started taking the retuxin. Its takes all the nutrients out and your skin is as thin as wet tissue.

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