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cindylb
@cindylb

Posts: 152
Joined: Jan 05, 2017

Cutaneous T Cell Lymphoma

Posted by @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.

REPLY

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?

@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?

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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!

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.

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

@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?

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@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…

Liked by cindylb

@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.

@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 I had ZERO Symptoms.. I had caught H-Pylori in some third world country. That is where my symptoms started which included severe acid reflex, stabbing chest pains, and thinking something I ate was poison. My throat was on fire from my tonsils clear to my stomach. Plus I had an aching stomach pain on and off on my right side. The DR ordered me to have a Endoscope and a Colonoscopy. They found an Ulcer in my Cecum which ended up being a stage 1 cecum cancer.. u get zero symptoms with cecum cancer till it is stage 4 and then when they did a CT Scan, I had swollen lymph nodes in my chest all around my aorta. They needed to sample the lymph nodes to rule out that the cecum cancer had spread. And BAM just like that I got the 2 for 1 double trouble special. Zero Symptoms on either cancer. As a matter of fact my blood work is perfect too.. Both found by my adventurous life style eating some contaminated food in a 3rd world country… The hardest thing for me is reminding myself I am healthy.. Every ache pain, sniffle, hot spell and sore muscle, I assume is a cancer symptom… That is the messed up part of lving with cancer…

Liked by cindylb

@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 I should also tell you I have stage 3 Follicular lymphoma without any symptoms.. Whatever that means???

@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 so much for the extra information. I’m sorry your travels resulted in a bad memory/outcome. I love to travel but perhaps will skip the adventurous eating after reading your story. This helps me a bit, so I appreciate you sharing. I have read that they are linking certain lymphomas (possibly) to H-Pylori and EBV. I have EBV and mild symptoms of it that may be causing my symptoms. Now on to some tests to determine if the virus has caused this additional cancer or if my skin rash is caused by something that is not cancer. And you are so right….once they tell a person they have cancer you grow ‘cancer radar’ that spikes each time your body does anything new. I guess it’s inevitable.

I have follicular lymphoma . I had radiation for a tumor on my neck.and groin over two years ago. Since then on my own I have been taking curcumin. Cancer has been undetectable for over two years now. I might have a natural remission or curcumin might be helping. I have a pet scan scheduled again in a year.Time will tell.

@vonbaron36

I have follicular lymphoma . I had radiation for a tumor on my neck.and groin over two years ago. Since then on my own I have been taking curcumin. Cancer has been undetectable for over two years now. I might have a natural remission or curcumin might be helping. I have a pet scan scheduled again in a year.Time will tell.

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I too have been diagnosed with follicular lymphoma. I just had my first pet scan since coming to mayo in April for a 2nd opinion. The pet scan showed better results than the Ct scans I had done at my previous clinic. I just had a bone marrow biopsy and if that comes back clean then I can have a low impact radiation treatment on the affected nodes in my neck. I think the curcumin is probably helping. I take that as well.

I have stage 3 follicular lymphoma. Mine was found while doing a CT Scan prior to surgery for stage 1 cecum cancer. I had zero symptons for either cancer. I have perfect blood work and no visual swollen lymph nodes. The swollen lymphes they found were next to my Aorta.. They did a CT guided biopsy of the nodes to determine the lymphoma. When they removed 1 foot of my colon they took 30 lymph nodes. Some of those as well tested positive for lymphoma. I was getting CT scans every 3 months for 1 year. I did not take any medicine. Just some added vitamins for 6 months only, the lymph nodes went down in size on there own. I go next month again for a CT scan. Lets see if by doing nothing they have continued to shrink? This is actually my first time of having a CT scan taken at 6 months..

Wow, what an endeavor for you. Amazed you had no symptoms. Scary! I’ve had two strokes and lots of blood clots and two heart attacks. I’ve lost track of the multitude of CT’s I’ve had. Sure hope the next DX isn’t Cancer. (Hoping there is none) X ing my fingers. I wish you well and no more DX for you either!
Pam

@vonbaron36

I have follicular lymphoma . I had radiation for a tumor on my neck.and groin over two years ago. Since then on my own I have been taking curcumin. Cancer has been undetectable for over two years now. I might have a natural remission or curcumin might be helping. I have a pet scan scheduled again in a year.Time will tell.

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What is curcumin? Prescription or natural thing?
Pam

@vonbaron36

I have follicular lymphoma . I had radiation for a tumor on my neck.and groin over two years ago. Since then on my own I have been taking curcumin. Cancer has been undetectable for over two years now. I might have a natural remission or curcumin might be helping. I have a pet scan scheduled again in a year.Time will tell.

Jump to this post

I had the same thing on my neck. It was large. Had radiation and started taking curcumin on my own. Had two pet scans since. No detectable follicular lymphoma since. Over two years. another pet scan in a year.

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