1. < Blood Cancers & Disorders

Anyone have Cutaneous T Cell Lymphoma?

Posted by cindylb @cindylb, Jul 28, 2017

Does anyone in the group have Cutaneous T Cell Lymphoma? I am waiting for an appointment with my oncologist (follow up for breast cancer) and am at possible risk for this cancer. I'd like to hear from anyone who has experienced these symptoms, how they got their diagnosis and what treatments they have or are having. Thank you.

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cindylb | @cindylb | Jul 31, 2017
In reply to @JustinMcClanahan "Hello @cindylb, Thank you for starting a discussion on cutaneous t cell lymphoma. If you don't..." + (show)
@JustinMcClanahan

Hello @cindylb,

Thank you for starting a discussion on cutaneous t cell lymphoma. If you don't mind, would you be comfortable sharing a few more details about your possible diagnosis?

First off, I hope your treatment & diagnosis of breast cancer are going well. Did your medical provider say you are at a higher risk for lymphoma because of your breast cancer, or have you already shown signs and symptoms of lymphoma? I would like to invite a few members who have or had lymphoma. While it may not be the same type of lymphoma, they may be able to offer some insight. @travelgirl, @carlos12, @craigkopcho, and @kjs1015 all discussed having varying types of lymphoma and treatments they underwent and may be able to offer some of their symptoms and treatments.

@cindylb, how soon is your followup with your oncologist?

Jump to this post

Thank you for your post, I appreciate it. Can you tell me more about what your symptoms were that alerted them to your Lymphoma? Best of everything to you and good health.

REPLY
Jackie, Alumna Mentor | @travelgirl | Jul 31, 2017
In reply to @JustinMcClanahan "Hello @cindylb, Thank you for starting a discussion on cutaneous t cell lymphoma. If you don't..." + (show)
@JustinMcClanahan

Hello @cindylb,

Thank you for starting a discussion on cutaneous t cell lymphoma. If you don't mind, would you be comfortable sharing a few more details about your possible diagnosis?

First off, I hope your treatment & diagnosis of breast cancer are going well. Did your medical provider say you are at a higher risk for lymphoma because of your breast cancer, or have you already shown signs and symptoms of lymphoma? I would like to invite a few members who have or had lymphoma. While it may not be the same type of lymphoma, they may be able to offer some insight. @travelgirl, @carlos12, @craigkopcho, and @kjs1015 all discussed having varying types of lymphoma and treatments they underwent and may be able to offer some of their symptoms and treatments.

@cindylb, how soon is your followup with your oncologist?

Jump to this post

@cindylb So Sorry I wish I could offer you some advise or insight. I have follicular Lymphoma. Hematology has me on a wait and watch approach to my treatments. Which consists of CT scans to monitor the lymph nodes in my chest that were enlarged and blood work My next appointment is in September.. I am watched every 6 months...

REPLY
cindylb | @cindylb | Jul 31, 2017

Thank you for your feedback. I hope your treatment goes well and you stay strong too.

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car12 | @carlos12 | Jul 31, 2017

Hi Cindylb,

I was diagnosed of lymphoma about 7 months ago. I already finished the chemotherapy and the cancer is in remission. My symptoms were different than yours. I started with stomach problems that were increasing little by little until I had an endoscopy. The doctor found a tumor in my stomach, which was generated by the T-Cells. The diagnostic was the T-Cell Lymphoma. One of the symptoms I had for several years was the night sweats, typical of the lymphoma according to my oncologist doctor. I never had any swollen lymph nodes I could notice or see.

Hope you find the right diagnosis and keep yourself strong during treatment.

REPLY
cindylb | @cindylb | Jul 30, 2017
In reply to @JustinMcClanahan "Hello @cindylb, Thank you for starting a discussion on cutaneous t cell lymphoma. If you don't..." + (show)
@JustinMcClanahan

Hello @cindylb,

Thank you for starting a discussion on cutaneous t cell lymphoma. If you don't mind, would you be comfortable sharing a few more details about your possible diagnosis?

First off, I hope your treatment & diagnosis of breast cancer are going well. Did your medical provider say you are at a higher risk for lymphoma because of your breast cancer, or have you already shown signs and symptoms of lymphoma? I would like to invite a few members who have or had lymphoma. While it may not be the same type of lymphoma, they may be able to offer some insight. @travelgirl, @carlos12, @craigkopcho, and @kjs1015 all discussed having varying types of lymphoma and treatments they underwent and may be able to offer some of their symptoms and treatments.

@cindylb, how soon is your followup with your oncologist?

Jump to this post

Justin, Thank you for reaching out to me. I get my insurance through my employer and they have changed providers, leaving me with a situation where I am essentially starting over with all new doctors for my care. Just prior to the change I started having a skin rash that I have now had for 6 months. I had that biopsied and saw two dermatologists with two different diagnosis, neither of which was conclusive for anything other than spongeotic dermatitis (which is quite general). I have a follow up with a new oncologist in late August. That was set as a breast cancer follow up but I will be asking questions about this rash as well. One of the dermatologists suggested that I might have Cutaneous T Cell Lymphoma, but it is very rare. However, it is often misdiagnosed for many years..... I wondered if anyone on the discussion boards might have had a similar experience or any insight into this cancer.

My breast cancer was Stage 1 with no lymph involvement and I have had no recurrence for 1 1/2 years. I continue follow up for that. I did however have mono 3 years ago (a very bad case) and have tested positive for Epstein Barr virus. Along with my rash I frequently have the feeling the mono is returning but not as severe. When I have those symptoms the rash escalates. The rash is on my chest, underarms, lower back and lower pelvis....only places with large numbers of lymph nodes, which is where the possible link to a lymphoma type cancer comes into the picture. The rash started along my scar lines of my bi lateral mastectomy, about 4 months after a scar revisions surgery. I believe my new oncologist will have information and possible tests to address this. It may be a cancer or something completely unrelated but I also understand it is hard to pin down. Also, possibly relevant is that since my mastectomy in late 2015 I have also had Shingles twice. There is obviously an immune system connection to all of this. 6 months of itchy rash, sore throat and swollen glands is making me a crazy person.

I am interested in finding anyone who might have experience with these symptoms or a similar situation who may be able to help.

Thank you!

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jul 30, 2017

Hello @cindylb,

Thank you for starting a discussion on cutaneous t cell lymphoma. If you don't mind, would you be comfortable sharing a few more details about your possible diagnosis?

First off, I hope your treatment & diagnosis of breast cancer are going well. Did your medical provider say you are at a higher risk for lymphoma because of your breast cancer, or have you already shown signs and symptoms of lymphoma? I would like to invite a few members who have or had lymphoma. While it may not be the same type of lymphoma, they may be able to offer some insight. @travelgirl, @carlos12, @craigkopcho, and @kjs1015 all discussed having varying types of lymphoma and treatments they underwent and may be able to offer some of their symptoms and treatments.

@cindylb, how soon is your followup with your oncologist?

REPLY
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