Blood Cancers & Disorders Support Group

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Comments (72)

Shari715 Good to hear your ctcl is undee control. I, too have stage 1 MF. Treated...

https://connect.mayoclinic.org/comment/918052/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Aug 24, 2023

I have a slightly different cell type of CTCL. Also most people at diagnosis are not...

https://connect.mayoclinic.org/comment/958876/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Nov 4, 2023

Welcome to Connect @charlenekeogh. You found the right discussion group with members who also CTCL such...

https://connect.mayoclinic.org/comment/953221/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Oct 24, 2023

I am not having electrophoresis. Other people may have this treatment. I know there’s chemo oral...

https://connect.mayoclinic.org/comment/1164882/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2024

Hi @shufie, Welcome to Mayo Connect. I’m so happy you found this discussion since your son...

https://connect.mayoclinic.org/comment/1545554/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Apr 8 9:36am

Hi all My 33 yr old son was diagnosed in July with CTCL/MF. He had "eczema"...

https://connect.mayoclinic.org/comment/953179/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Oct 24, 2023

My husband has CTCL, diagnosed about 5 years ago. Entered a drug trial at UAMS and...

https://connect.mayoclinic.org/comment/920086/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Aug 28, 2023

I am so fortunate with my Mycosis fungoides which I call CTCL, as I was diagnosed...

https://connect.mayoclinic.org/comment/943799/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Oct 7, 2023

In mid-2022 I noticed 3-4 small dime to quarter size white patches developing on my thigh....

https://connect.mayoclinic.org/comment/1095417/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Jun 27, 2024

So sorry to hear about your condition. I too suffer with eczema from birth and after...

https://connect.mayoclinic.org/comment/161949/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Sep 9, 2019

Welcome to Connect, @darenh! It’s really interesting the different treatments for CTCL with unique results for...

https://connect.mayoclinic.org/comment/1307589/

Discussion: Cutaneous T-cell lymphoma consistent with mycosis fungoides

Support Group: Blood Cancers & Disorders

Posted: May 19, 2025

I have CTCL- MF. Initially, that is about 8yrs ago, I had 72 UVB light treatments...

https://connect.mayoclinic.org/comment/953777/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Oct 25, 2023

Welcome to Connect, @58skywagon. Thanks for sharing your positive news about the treatments you’ve used for...

https://connect.mayoclinic.org/comment/1096226/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Jun 29, 2024

Thank you for the reassuring words. The cream works remarkably quickly. I noticed a change within...

https://connect.mayoclinic.org/comment/808036/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Feb 8, 2023

@penelopem Good luck with everything today! This is a new experience for you so I know...

https://connect.mayoclinic.org/comment/1544757/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Apr 7 9:37am

Thanks for your kind words. The best, if somewhat overwhelming information, is on the CTCL. I...

https://connect.mayoclinic.org/comment/1035865/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Mar 18, 2024

I am waiting for my biopsy report to be completed, however it appears I will get...

https://connect.mayoclinic.org/comment/1186551/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 8, 2024

@shufie Hi. It is important to get a specific diagnosis of exactly what type of CTCL....

https://connect.mayoclinic.org/comment/1545671/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Apr 8 11:13am

Hi Wendy, @hariet1. Somehow this post snuck past me! So let me wish you a delayed...

https://connect.mayoclinic.org/comment/1293333/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 30, 2025

I was diagnosed with CTCL in October of 2022. The diagnosis was finally done after a...

https://connect.mayoclinic.org/comment/1095666/

Discussion: Anyone have Cutaneous T Cell Lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Jun 28, 2024