1. < Blood Cancers & Disorders
Profile picture for georgie2

Primary cutaneous marginal zone B-cell lymphoma (PCMZL)

Posted by georgie2 @georgie2, Jan 23, 2023

Looking to connect with others also diagnosed with PCMZL. This is a rare type of nonHodgkins, B-cell cutaneous lymphoma. This past year, I began an informal private FB support group called PCMZLers which is small, but growing.

I was diagnosed in 2018 after surgical removal of two odd purple nodules on my arm. My biopsy sample (which was benign, but deemed "atypical") was sent to two different labs for a conclusive diagnosis.

Since then, I have been a wait & watch patient, managing symptoms mostly via my own natural care plan. I am being monitored quarterly by my primary care physician who is a D.O.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for steiner
steiner | @steiner | Feb 22 8:53pm
In reply to @steiner "@georgie2 I have sent you a private message. Take Care Scottie" + (show)
Profile picture for steiner @steiner

@georgie2 I have sent you a private message.

Take Care
Scottie

Jump to this post

@steiner Please get in touch.

Take Care

Kind regards
Steiner

REPLY
Profile picture for steiner
steiner | @steiner | Feb 23 7:09am
In reply to @medgabi "Hi Georgie, My husband was just diagnosed with this last month. We are currently discussing treatment..." + (show)
Profile picture for medgabi @medgabi

Hi Georgie,

My husband was just diagnosed with this last month. We are currently discussing treatment options.

I’d love to be a part of your Facebook group. I tried searching for it but couldn’t find it.

Also curious to know more about your watch and wait management. My husband has 5 spots that are all very small and do not bother him.

Doctors are discussing IV rituximab, but I’m a bit hesitant.

Thanks!

Jump to this post

@medgabi

Hi Medgabi, I hope all is well with your husband and with you.

I would be extremely grateful if you could possibly update me or send me a private message?

I have read a post from another member re: Primary Cutaneous Marginal Zone extra nodal B-Cell Non-Hodgkin’s lymphoma.

Many thanks

Take Care
Steiner

REPLY
Profile picture for steiner
steiner | @steiner | Feb 23 7:11am

@georgie2
Please contact me.

Take Care
Steiner

REPLY
Profile picture for steiner
steiner | @steiner | Feb 23 7:36am
In reply to @medgabi "I will keep you posted! And not a silly question at all. When he was first..." + (show)
Profile picture for medgabi @medgabi

I will keep you posted!

And not a silly question at all. When he was first diagnosed, we were very shocked and worried and didn’t have much information on it. My husband was definitely anxious (as was I) and it was a very hard few weeks as we were navigating through testing and doctor appts.

Now that we know it is just on his skin and there is no systemic involvement we are relieved. And have been reassured by his doctors.

We’ve been told -

1. Out of all of the lymphomas (there’s over 150 I guess?) that this is the “best” one to have

2. It is very lazy and slow growing and very treatable

3. People do not die from this

And after all of the research I’ve done, I would probably rate it around a 3-4/10?

It’s definitely something we’ll need to stay on top of and manage, but plan to continue living our lives to the fullest we can!

We have been trying to conceive for a year now. I’ve had two early losses. So that is our ultimate goal and are feeling grateful that we have the chance to keep trying!

I found the page but haven’t been accepted yet.

I just typed in “PCMZLers” and scrolled down until I found it!

Jump to this post

@medgabi
I was trying to send you a private message but have been unable to?

If you could I would be extremely grateful if you would send me a private message.

Thanks so very much

Take Care

Kind regards
Steiner

REPLY
1 reply
Profile picture for steiner
steiner | @steiner | Feb 23 7:46am

@georgie2 Trust all is well.

I have sent you a private message in reply to your private message to me.
I would be extremely grateful if you could reply back to me.

Many thanks
Take Care

REPLY
Profile picture for steiner
steiner | @steiner | Feb 23 2:09pm
In reply to @steiner "@georgie2 I have sent you a private message. Take Care Scottie" + (show)
Profile picture for steiner @steiner

@georgie2 I have sent you a private message.

Take Care
Scottie

Jump to this post

@georgie2
Hi Georgie,
I hope you are very well.

Please note there is no one else to my knowledge who has been diagnosed with this extremely rare blood cancer of Primary Cutaneous Marginal Zone B-Cell Non-Hodgkin’s lymphoma extra nodal on my continent.

I value very greatly and am grateful for any information I can get on it or to simply be of assistance to anyone else diagnosed with it.

I hope 🤞 to get a wonderful job and go back to work asap.

Take Care

Kind regards

REPLY
Profile picture for steiner
steiner | @steiner | Feb 23 2:14pm
In reply to @steiner "@medgabi I was trying to send you a private message but have been unable to? If..." + (show)
Profile picture for steiner @steiner

@medgabi
I was trying to send you a private message but have been unable to?

If you could I would be extremely grateful if you would send me a private message.

Thanks so very much

Take Care

Kind regards
Steiner

Jump to this post

@medgabi
Did you know that there is no one else on my continent to my knowledge who had a diagnosis of this extremely rare blood cancer of Primary Cutaneous Marginal Zone B-Cell Non-Hodgkin’s lymphoma extra nodal?

I value immensely any contact with anyone else who has been diagnosed with it, to help them and for them to help me, by us both sharing our journey.

I pray all is well with you.

Take Care

Kind regards

REPLY
1 reply
Profile picture for steiner
steiner | @steiner | Feb 24 7:13am
In reply to @steiner "@medgabi Did you know that there is no one else on my continent to my knowledge..." + (show)
Profile picture for steiner @steiner

@medgabi
Did you know that there is no one else on my continent to my knowledge who had a diagnosis of this extremely rare blood cancer of Primary Cutaneous Marginal Zone B-Cell Non-Hodgkin’s lymphoma extra nodal?

I value immensely any contact with anyone else who has been diagnosed with it, to help them and for them to help me, by us both sharing our journey.

I pray all is well with you.

Take Care

Kind regards

Jump to this post

@medgabi How are you?

REPLY
View MoreView Less
Please sign in or register to post a reply.