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nonhepatosplenic gammadelta T-cell lymphoma

Scoobydooby8910's picture
Scoobydooby8910
Posts: 8
Joined: Oct 2013

Hello everyone,

i was diagnosed with stage 4 peripheral t-cell lymphoma unspecified in May 2013 after a year of suffering with nasal congestion that did not respond to frontline and secondary treatments.  I also had a small rash on my left temple that was originally diagnosed as sarcoidosis, but turned out to be part of the lymphoma.  The sub category has been defined as non hepatosplenic gamma delta t-cell lymphoma.  I have completed 5 of 6 rounds of CHOP with etoposide and am preparing for an autologous stem cell transplant At the university of Nebraska medical center.  

I have been unable to find much information about this cancer, especially good news.  if you have experience with this cancer, good or bad, please let me know.  I am interested in symptoms, treatments, struggles and triumphs.  I am the head of household for a family of 5 and want to find the best possible treatment and approaches to deal with this, regardless of the out come.  I have to help my family as much as possible with a succession plan!

Thank you so much in advance!

Scooby

Rocquie's picture
Rocquie
Posts: 481
Joined: Mar 2013

Hello, Scooby, and welcome to the group. I'm glad you found us.

We have 2 members, that I know of, who are in the process of SCT's right now. One of them has T-cell lymphoma. We have another active member, that I know of, who has been in a durable remission from T-cell lymphoma for several years.

You have found a good place for hope and it sounds like you need some. Please remember that their are many new treatments for lymphoma being presented regularly. Also, much of what you find online is very dated as far as advances in lymphoma treatment.

Whether you feel confident in your care team or not, it is always encouraging to seek consultation with another doctor. You don't say whether you have done this but many members have, myself included. I also got a second opinion on my pathology, which is highly recommended. I hope you have an advocate to go to appointments with you to take notes and help ask questions?

I look forward to getting to know you better and learning more about your treatments.

Big, welcoming (((hug)))

Rocquie

 

Scoobydooby8910's picture
Scoobydooby8910
Posts: 8
Joined: Oct 2013

Hi Rocquie,

i am very fortunate to have a wonderful support system including my husband who is my champion and advocate.  I also have a highly regarded hematologistoncologist, but just initiated a second opinion from MD Anderson.  I am so grateful for your response - you're right, I am looking for some hope right now!

i hope to hear from others soon who have had some success fighting this type of cancer.

thank you again,

Scooby

MChantal's picture
MChantal
Posts: 101
Joined: Apr 2013

Hi there,

My fiance Kyle was diagnosed with Peripheral T-Cell Lymphoma-Not Otherwise Specified in April 2013. Initally, before recieving the final diagnosis we were told he had Hepatosplenic Gamma Delta T-Cell Lymphoma and were rushed to the Mayo Clinic in Rochester for further testing only to find out it was PTCL-NOS instead. If you go to my page, it gives a lot more detail of our journey (signs/symptoms, etc).

Kyle (my fiance) completed 6 rounds of CHOPE and thanks to God, the cancer responded 100% putting him into full remission. Right now, I am sitting by Kyle at the Colorado Blood Cancer Institute as this is Day +3. He has had an autologous stem cell transplant. He received his cells October 8th and 9th. Until today, this is the first day he has felt like he actually is having a stem cell transplant (nausea, fatigue, mouth sores)

You are more than welcomed to ask questions on here or email me.

Sending positive thoughts,

Michelle

 

Scoobydooby8910's picture
Scoobydooby8910
Posts: 8
Joined: Oct 2013

Thank you for replying to me, and let me say that I am sorry that you and Kyle are having to go through this.  My experience is very similar to Kyle's except that I was diagnosed with PTCL-NOS first, then the bone marrow showed non-hepatosplenic gamma delta t-cell lymphoma.  My first symptoms were a small rash on my left temple, and unrelenting nasal congestion.  I have never had the fever, weight loss or night sweats and have continued to work part time through chemo.

i have finished 5 of 6 rounds of CHOP-E, but have had extreme swelling and inflammation of face skin, nose, lips and eyes.  I had more biopsies of the nose Friday to see if it is the lymphoma.  If it is, I will have to have radiation, more and different chemo, then a donor SCT as opposed to autologous SCT.

i was so very happy to read about Kyle's success with CHOP-E and autologos SCT.  Even though our situations are slightly different, it gives me hope because if my biopsies come back without lymphoma, that is the same path I am on.

i will post again when I have the results of my biopsies.

comfort and hugs,

Lisa

MChantal's picture
MChantal
Posts: 101
Joined: Apr 2013

PTCL-NOS is a very broad range of lymphoma's as it's always so interesting to hear other individuals symptoms of it's appearance. When you say "non"-hepatosplenic gamma delta t-cell lymphoma what does that entitle? I am wondering if the swelling is a result of the CHOPE?

I am praying for the best results for you!

Hugs,

Michelle :)

Scoobydooby8910's picture
Scoobydooby8910
Posts: 8
Joined: Oct 2013

My understanding is that non-hepatosplenic gamma delta t-cell lymphoma does not originate in the liver or spleen.  I asked my oncologist if hon-hepatosplenic means it is primary cutaneous gamma delta, but she said no.  It is systemic.  

I am not sure i completely understand, so if anyone has a better explanation please share!

I am hoping that the swelling and lesions are a result of the e-chop, but I had these lesions inside my nose prior to starting chemo. They are now outside my nose, my upper lip, and the roof of my mouth.

i am anxious to get the results of the biopsies from last week!

have a great week!

po18guy
Posts: 237
Joined: Nov 2011

I hope that you either consult with Dr. Julie Vose, or your doctor has consulted with her. She is one of a handful of bona fide T-Cell experts int he US. With such a rare (individual, almost) cancer, one needs all of the help they can get. As MChantal said, PTCL-NOS actually includes a wide variety of T-Cell Lymphomas that have nothing in common other than that they originalted in a T-lymphocyte that martured in the thymus gland. 

I am in the same general category (NOS), but my cancer is essentially identical to AngioImmunoblastic T-Cell Lymphoma. Thus, it responds to certain treatments that may do absolutely nothing to other T-Cell Lymphomas, and vice versa. These are very rare and aggressive cancers, and time is of the essence in fighting them. 

There is a new T-Cell Foundation that has been formed specifically to assist the T-Cell cancer patient in finding a T-Cell expert, and hopefully, in seeking treatment at a regional academic research facility. Features are being aded regularly and there is a list of noted T-Cell doctors who may be comsulted via email for advice. Have a look: http://tcllfoundation.org/

As an aside, I also had CHOEP, but it was combined with and followed by GND, which doctor says he probably would not use again, due to advances made in the past 5 years.

It almost sounds like you "might" have Nasal NK/T-Cell Lymphoma, as that is where it originates. If it begins outside of the nasal cavity, it is known as "nasal type". There is an article on the foundation website dealing with this variety. Some of them respond primarily to localized radiation far better than chemo. 

All the best to you.  

Scoobydooby8910's picture
Scoobydooby8910
Posts: 8
Joined: Oct 2013

I appreciate your recommendation.  Dr Vose is my hematologist oncologist!  

MChantal's picture
MChantal
Posts: 101
Joined: Apr 2013

Hello ScoobyDooby8910, no news is good news?

Rocquie's picture
Rocquie
Posts: 481
Joined: Mar 2013

I was hoping you would post here.

I am so happy that it is going so well for Kyle. I'm still praying for you both.

Hugs,

Rocquie

MChantal's picture
MChantal
Posts: 101
Joined: Apr 2013

We are doing well. Kyle is on Day +5 of his SCT and he has begun to show the definite drop in his ANC being at 17. Ahh! Haha. Poor Kyle has mouth sores right now and it's pretty difficult for him to eat/drink. Yet, he is a trouper and pushing forward!

Thank you for the relentless prayers,

Love,

Michelle

po18guy
Posts: 237
Joined: Nov 2011

You aree in very good hands. She is part of the nationwide network of T-Cell experts that is being asembled to pool knowldege and other resources for the benefit of patients who have the rare and usually aggressivve T-Cell Lymphomas and Leukemias. All the best to you!

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