Mantle Cell Lymphoma

Posted by roberthall0452 @roberthall0452, Jan 29, 2019

Anyone out there with this condition

@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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@sweede536

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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All that sounds quite unpleasant. You didn’t mention if they offer treatment for your symptoms. Have you been responding to treatment so well that they don’t want to discontinue it?

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@sweede536

Just the same infusions. Retuxin.

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Hello @sweede536. I also don’t have cancer but do get infusions of rituxan twice a year. I usually get pre-meds of dexamethesone infusion and benedryl before the infusions. You might ask the oncologists about the skin changes you’re having. Open sores and skin tears are good sites for infections. I would recommend wearing long sleeves and keeping your skin very clean. But, please check with your doctor.
This article talks about targeted therapies and skin reactions like you are getting with rituxan.
https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/skin-reactions-targeted-therapy-and-immunotherapy

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@roberthall0452

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.

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I've had it for 4 1/2 years. I'm 74 and its in remission and still get two infusions every 6 weeks.

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@lottajoy

I was recently diagnosed with Mantle Cell Lymphoma and would appreciate hearing from anyone who is knowledgeable on this topic.

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I've had it for 4 1/2 years. In remission right now.

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@roberthall0452

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.

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I'm a 74 year old Male and have MCL since 2016. I get two infusions every 6 weeks. Right now it in remission.

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@colleenyoung

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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Been on Rituxan for about 4 years.
Its year I was on chemo.

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