I was diagnosed with Primary Cutaneous Marginal Zone Lymphoma (PCMZL) in 2018. It is a rare type of indolent (slow moving) nonHodgkins Cutaneous B-Cell lymphoma.
I was dxed after surgery to remove the initial purple nodules on my arm which were then sent in for biopsy. It was benign, but deemed "atypical" and sent to a 2nd lab which dxed it as PCMZL.
Since the particular type of lymphoma I have is indolent and people generally die from something else WITH it, but not because of it - I was advised by my very trusted primary care D.O. to remain being monitored quarterly as a watch & wait patient. Side effects and all of the risks associated with more aggressive approaches which may or may not help are not worth it. My PCP is monitoring and overseeing my own natural care plans.
I am pretty much left to find ways to manage symptoms myself and just live my life as best I can. Since it is so rare and I live in a rural area, most of the local medical community have never even heard of it, yet alone have any experience treating it. Even in large cities with the best of hospitals & medical centers, it appears that nobody really knows for sure what to do for us.
Since the dx, I have learned there are many different subtypes of these rare nonHodgkins Cutaneous B Cell Lymphomas. Some folks seem to be having a hard time getting a precise dx of exactly which subtype they have. I feel fortunate to at least know that much.
I was diagnosed with Burkittslymphoma in 1974. I was then given a total hysterectomy and a bilateral sapingo oopherectomy at only two years old. I am now ill and no one wants to operate due to the surgery. I literally feel like I’m dying and no one will help me.
I was diagnosed with Burkittslymphoma in 1974. I was then given a total hysterectomy and a bilateral sapingo oopherectomy at only two years old. I am now ill and no one wants to operate due to the surgery. I literally feel like I’m dying and no one will help me.
Welcome to Connect, @noh8pink. My goodness, you’ve certainly had your share of medical drama from an early start in life. How tragic to have a hysterectomy and oopherectomy at the age of two…that was 50 years ago by my reckoning. Have you had a recurrence of cancer that requires surgery? What illness are you experiencing?
Welcome to Connect, @noh8pink. My goodness, you’ve certainly had your share of medical drama from an early start in life. How tragic to have a hysterectomy and oopherectomy at the age of two…that was 50 years ago by my reckoning. Have you had a recurrence of cancer that requires surgery? What illness are you experiencing?
I don’t know what’s going on. Somethings wrong with my colon and my bowel just got home from the hospital again hopefully will find out soon because I haven’t been feeling well. All within the span of a month I’ve gone from feeling healthy to feeling mousy.
I don’t know what’s going on. Somethings wrong with my colon and my bowel just got home from the hospital again hopefully will find out soon because I haven’t been feeling well. All within the span of a month I’ve gone from feeling healthy to feeling mousy.
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I was diagnosed with Primary Cutaneous Marginal Zone Lymphoma (PCMZL) in 2018. It is a rare type of indolent (slow moving) nonHodgkins Cutaneous B-Cell lymphoma.
I was dxed after surgery to remove the initial purple nodules on my arm which were then sent in for biopsy. It was benign, but deemed "atypical" and sent to a 2nd lab which dxed it as PCMZL.
Since the particular type of lymphoma I have is indolent and people generally die from something else WITH it, but not because of it - I was advised by my very trusted primary care D.O. to remain being monitored quarterly as a watch & wait patient. Side effects and all of the risks associated with more aggressive approaches which may or may not help are not worth it. My PCP is monitoring and overseeing my own natural care plans.
I am pretty much left to find ways to manage symptoms myself and just live my life as best I can. Since it is so rare and I live in a rural area, most of the local medical community have never even heard of it, yet alone have any experience treating it. Even in large cities with the best of hospitals & medical centers, it appears that nobody really knows for sure what to do for us.
Since the dx, I have learned there are many different subtypes of these rare nonHodgkins Cutaneous B Cell Lymphomas. Some folks seem to be having a hard time getting a precise dx of exactly which subtype they have. I feel fortunate to at least know that much.
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Like -
Helpful -
Hug
2 ReactionsI was diagnosed with Burkittslymphoma in 1974. I was then given a total hysterectomy and a bilateral sapingo oopherectomy at only two years old. I am now ill and no one wants to operate due to the surgery. I literally feel like I’m dying and no one will help me.
Welcome to Connect, @noh8pink. My goodness, you’ve certainly had your share of medical drama from an early start in life. How tragic to have a hysterectomy and oopherectomy at the age of two…that was 50 years ago by my reckoning. Have you had a recurrence of cancer that requires surgery? What illness are you experiencing?
I don’t know what’s going on. Somethings wrong with my colon and my bowel just got home from the hospital again hopefully will find out soon because I haven’t been feeling well. All within the span of a month I’ve gone from feeling healthy to feeling mousy.
-
Like -
Helpful -
Hug
1 ReactionI hope you get some answers soon so that you can get back to feeling well again! Will you please let me know what you find out? Sending out a hug…