Blood Cancers & Disorders Support Group

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Comments (72)

My sister has a benign form of CTCL called Lymphomatoid Papulosis. It’s rare ( one in...

https://connect.mayoclinic.org/comment/1040872/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Mar 27, 2024

Welcome to Connect, @ccarter006! It can be a relief to speak with others who share a...

https://connect.mayoclinic.org/comment/1293357/

Discussion: Diagnosed with Mycosis fungoides. Don’t understand what to expect?

Support Group: Blood Cancers & Disorders

Posted: Apr 30, 2025

My CTCL is the MF

https://connect.mayoclinic.org/comment/1112515/

Discussion: Is Cutaneous T-Cell Lymphoma a Death Sentence?

Support Group: Blood Cancers & Disorders

Posted: Jul 27, 2024

Hi @nani2025. Welcome to Connect. Your experience with CTCL and what has worked for you to...

https://connect.mayoclinic.org/comment/1307496/

Discussion: Cutaneous T-cell lymphoma consistent with mycosis fungoides

Support Group: Blood Cancers & Disorders

Posted: May 19, 2025

I have the other type of CTCL and have not needed medication. You are on some...

https://connect.mayoclinic.org/comment/1039593/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Mar 24, 2024

Hi @bilpal6, welcome. I moved your post about being diagnosed with stage IIB CTCL to this...

https://connect.mayoclinic.org/comment/1031345/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Mar 10, 2024

Hello @madisong Welcome to Mayo Clinic Connect. Cutaneous T Cell Lymphoma is a bit of a...

https://connect.mayoclinic.org/comment/807495/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2023

I was just diagnosed today with CTCL. I am 46 and have some co-morbidities (psoriasis, Factor...

https://connect.mayoclinic.org/comment/1292212/

Discussion: Diagnosed with Mycosis fungoides. Don’t understand what to expect?

Support Group: Blood Cancers & Disorders

Posted: Apr 28, 2025

Hi. I was never diagnosed with Psoriasis but Eczema. My dermatologist thought that there had been...

https://connect.mayoclinic.org/comment/1094232/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Jun 25, 2024

I’m sorry you have this. I have been diagnosed with CTCL in February this year. If...

https://connect.mayoclinic.org/comment/973464/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Dec 1, 2023

Would your CTCL be Sezary Syndrome or MF? I have SS, have asked about phototherapy but...

https://connect.mayoclinic.org/comment/1111393/

Discussion: Is Cutaneous T-Cell Lymphoma a Death Sentence?

Support Group: Blood Cancers & Disorders

Posted: Jul 25, 2024

I have CTCL and it was confirmed with biopsy. I was given an ointment and told...

https://connect.mayoclinic.org/comment/973469/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Dec 1, 2023

i sent a reply in earlier on another thread on my CTCL treatment process. it went...

https://connect.mayoclinic.org/comment/1095424/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Jun 27, 2024

I was diagnosed with CTCL in March 2023. We started treating with Valchlor gel (special order/cold...

https://connect.mayoclinic.org/comment/1095409/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Jun 27, 2024

Hi. I have mycosis fungoides which is a common type of CTCL. I am not an...

https://connect.mayoclinic.org/comment/973484/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Dec 1, 2023

Hi @mrducks. Welcome to Connect. Let’s get you over to the right support group where you’ll...

https://connect.mayoclinic.org/comment/1252153/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Mar 6, 2025

My son has recently been diagnosed with CTCL. I am very interested in treatments that will...

https://connect.mayoclinic.org/comment/1545431/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Apr 8 8:01am

No I have not spoken to genetics counselor. I wonder how many people have had Non-Hodgkin...

https://connect.mayoclinic.org/comment/1035963/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Mar 18, 2024

Hi Cindylb, I was diagnosed with cutaneous T-cell lymphoma in 2017. I had a hysterectomy and...

https://connect.mayoclinic.org/comment/1523568/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Mar 9 9:28pm

So my original biopsy was inconclusive, but strongly suggestive of CTCL. My regular dermatologist really leaned...

https://connect.mayoclinic.org/comment/1293628/

Discussion: Is Cutaneous T-Cell Lymphoma a Death Sentence?

Support Group: Blood Cancers & Disorders

Posted: Apr 30, 2025