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Hepatosplenic T-cell Lymphoma

Posts: 1
Joined: May 2001

Hi friends!
I was diagnosed with Hepatosplenic T-cell Lymphoma in February of this year. I am currently undergoing chemotherapy and would love to share experiences with anyone else who has this monster!
I am a 38 year old mother of two, registered nurse, who before February was the picture of health. I first went to the doctor because everytime I ate, even 1/2 a sandwich, I felt full. The doctor and I both thought it was a bowel obstruction, but the cat scan showed an enormous spleen and bloodwork should pancytopenia (low blood counts on everything). A bone marrow biopsy confirmed lymphoma and I had immediate surgery to remove my diseased spleen. I have just completed chemo round #5 and am looking at chemo through August (at least). I am receiving CHOP therapy every 3 weeks and have been doing well except lately a little depression has settled in. I am waiting on some bone marrow results right now - hoping that the chemo is working. If anyone out there has this rare form of t-cell lymphoma, I'd love to chat with you.

Posts: 1
Joined: Apr 2011

My son was diagnosed back in 1994. He went through so much that I wrote a book about it which was published, called "Strength and Courage". Sloan Kettering was the only hospital willing to take him back then. He is alive and well today after an incredible journey.

Posts: 1
Joined: Aug 2011

Hi Linda, i just wanted to tell you that i just read your book and it was quite inspirational. At 41 yrs old, my husband was diagnosed with this agressive disease. Nearly 10 months, and 5 different chemo regimens later he is still fighting hard. He is awaiting an unrelated allo transplant to knock this thing out once and for all. Thank you for sharing you & your family's joirney to a cure.

Posts: 11
Joined: Apr 2012

Hi. Could you please contact me & let me know who treated you. Who can I contact? I am also wondering how you are doing. Thank you so much. I am so scared. Please help me. redelstein@centurytel.net

Posts: 8
Joined: Sep 2009

Dear Gretchen

I am thinking of you.
Thank you for taking the time to write just now.
All of us together can help find answers......

Gretchen Harder
Posts: 13
Joined: Dec 2009

Duplicate Post.

Posts: 1
Joined: Dec 2010

My mom was 53 last year when she has a massive scare. Doctors we unable to diagnose her problem. She was completely un-conscience lying on the hospital emergency bed. she was getting worse and worse by the second. I was scared to death. It turned out to be bacterial mennengitis. It was awful. I now understand why they make an emergency button , that they can wear around their neck. If my sister wasn't there to find my mom, she wouldn't be with us today.

Posts: 2
Joined: Jun 2011

Hi, I'm brazilian. I don't know how to write in english, cause I didn't study enough. But I will try to communicate with you. Well, my fiancé had the diagnostic with Hepatosplenic gammadelta T -cell lymphoma january 2 this year. It was terrifying notice. He's 25. I'm 23. He have been fighting against this disease since february. His spleen was removed january 11. He is currently in treatment with CODOX-M/IVAC, since may. But he started the treatment with HYPER-CVAD, with no favorable resuts, because the disease came back some weeks later. He had a historic with ulcerative rectocolitis since he was 18, he has been treated with Azathioprine 2 years before the diagnosis. It's so hard to see him in the hospital, so younger, with a lot of plans with me... I believe that he will get well, in remission. Sometimes we are in difficult moments, because the side effects, the emotional factor, the fear, the ill healthy... But I care about him, and I do all for him. If I could change the place with him, I will... It's so much suffering. I find good news to the others people that had this disease...


miss maggie
Posts: 929
Joined: Mar 2010

Hello Beatriz,

Your English is quite good. I am so sorry you have to be on our site. Aside
from that, you are in the right place.

I am not familiar with your fiancé's DX. I do know someone on this site will
be more familiar with his DX, and offer you hope and information. I see by
your post there is good news with others who have the same exact disease. It
is treatable. It might be a long road, but in the end, it will be all worth it.

I send my prayers, positive thoughts, to you both. Love Maggie

Posts: 2
Joined: Jun 2011

Unfortunately, my fiancé didn't resist the treatment... It's so unfair... I hate this disease and I hate chemoterapy... I'm so disappointed with everything... My world fall, my life is over.. I miss him so much, how can I live without him?

allmost60's picture
Posts: 3163
Joined: Jul 2010

Hi Beatriz,
I'm so very, very sorry for your loss. I understand your disappointment and feeling like your life is over. I know it feels like it right now, but in time, it will slowly get less painful. My heart aches for you and the sadness you are feeling. We are here, if you need someone to talk with. Take care...much love to you...Sue (FNHL-2-3A-6/10)

COBRA666's picture
Posts: 2418
Joined: May 2010

Oh my goodness Sue that Rituxan has worked a miracle on you. You look so much younger. . I hope it does the same for me. Ponce DeLeons' "Fountain of Youth" has nothing on you. I just can't believe it. I'm just messing with you,I know its a picture of your little Cutie. She is so sweet. John(FNHL-1-4A-5/10)

COBRA666's picture
Posts: 2418
Joined: May 2010

I know how it feels like all is falling on you all at once. It sometimes takes a lot of time to find the right combination of treatments. It will get better in time. Just try to keep your head up in the meantime. john

Posts: 2
Joined: Jul 2011

Hi, I would like to offer my heartfelt condolences to you.
My husband passed away from the same disease in August this year. I am fighting to raise awareness of this horrible disease now, and find that doing so is a great comfort to me.
I feel exactly the same as you do, my world has been turned upseide down and I feel like my life has been taken away. There are no words that will comfort you, but I hope that knowing that someone is thinking of you and knowing what you are going through will bring a little peace.
Again, I am so sorry XxX

Posts: 5
Joined: Nov 2011


Posts: 3
Joined: Nov 2011

I am 27 years old and I was diagnosed with HTCL last month. I was a veterinary student living in Colororado when I started getting fevers and elevated liver enzymes. I took a leave of absence from school and moved back to New York to be with my family. I am currently undergoing round 3 of IVAC chemo at Sloan Kettering. We just found out that my sister and I are a perfect match for transplant so hopefully that will happen in the next few weeks. This site has been very helpful to me to hear everyone elses stories. I have never met anyone with my disease. Thank you all for posting and I will keep you updated with my progress.

A note about the risks of immunosuppressive medications...

I have crohns disease and had been treated with azothioprine (imuran) as well as Humira for the past several years. When you are on this side of things, where you are one of the unlucky few to experience a negative side effect to a drug, it is easy to go back and try to say how dangerous this drug is. I want to STRONGLY urge people to look at the real numbers, and make the risk assessment for themselves. The reality is that crohns disease is a dangerous and deadly disease. There are only a handful of good treatment options for it. Hundreds of thousands of people worldwide are treated for autoimmune diseases with the drugs mentioned above and only a minuscule fraction end up with the crap luck hand that we have been dealt. I did read the labels on my drugs (as I always do, and you should too). I knew that there was a very small chance of getting lymphoma. But there was a very good chance of controlling my crohns so I decided to take the medication anyway. I do not regret my past decisions and I do not blame my GI doctor.

Let me be clear that I do believe that the majority of HTCL cases are caused by an adverse effect to immunosuppressive drugs. I do believe that this is an area that needs further research. I do believe that everyone should report all adverse effects of any drugs to the FDA. And I do believe that all doctors need to do a better job of having HONEST risk assessment conversations about all drugs that they prescribe. But I also believe that if you have crohns you need to do everything you can to control it. (I personally found The Paleo Diet to be a life saver!) The dangers of crohns are real, and your gastroenterologist should be knowledgeable about all of the risks and benefits to the meds he/she prescribes. Remember they want whats best for you too! Sometimes you have to take a risk to get a benefit. The only way out is through.

Posts: 1
Joined: Dec 2011

I am new to board and thankful that it is here. My brother 38 was diagnosed with HSTCL He has chrohns and was treated with remicaid, which worked very well for him. He just received chemo. Are there any resources we can look to as a resource for him? Thank you

Posts: 1
Joined: Dec 2011


My best wishes for you and i hope that you can get well soon.

Since i discovered the t-cell issue a few weeks ago i abandoned my humira. I was taking it for 1 year. So i am with imuran alone.

Please i need to know how many years have you been taking imuran. Humura and both together. Ir if you took remicade before. I can not sleep in the nights because i think that i am going to die soon ir soon i am going to suffer hstcl.

Best regards

Posts: 1
Joined: Jan 2012


First I want to say how deeply sorry I am for all your losses of loved ones and the hardship we all went through. I'd like to tell you about my story with HSTCL. Back in late so spring of 2010, I began to get sick from normal food intake and it all came to a head while riding a roller coaster at Hershey Park in PA. I never got sick from a ride in my entire life and so after a week of weighing my options; I went to my doc. That week before my doc visit I was accumulating weight that I later found out was the result of Ascities fluid. This resulted in horrible abdomen pain and fluid accumulating in my gut and legs. After the doc consulted with the liver team, they had me come in for a few days. They performed numerous blood panels and a liver biopsy.

As you can imagine, I got the horrible news on 15-JUL-2010. At Thomas Jefferson University Hospital (TJUH) in Philadelphia, PA, they started me on Hyper CVAD chemotherapy (cyclophosphamide, vincristine, doxorubicin [also known as Adriamycin] and dexamethasone. After 6 in-patient rounds of chemo, I was showing favorable results and was preliminarily in remission (with HSTCL there is no clear cut remission) -- or at least showing no signs of lymphoma.

December 2010, I was slated for my Allogenic bone marrow biopsy. Luckily, my older brother was a half match. I spent a month at TJUH for the transplant and had some maintenance issues in the following months resulting in more time at the hospital in seclusion.

Now, January 2012, I am doing great! Last year had many bumps in the road, such as sigmoid colon resectioning and colostomy, brain shunt, c-diff, photofersis, and other issues related to immunosuppresion.

I consider myself extremely lucky and fortunate. My family has stuck by me every step of the way and the personnel at TJUH is world class. Please consider TJUH if you are sick with cancer in the greater Philadelphia area. The doctors and specialists at TJUH gave me a second chance at life. I pray there is more research in this field and pray the best for you and yours. God bless!

Posts: 11
Joined: Apr 2012

Can you please contact me & let me know what steps I should take, questions to ask, ect....How are you doing? I pray you are still well!!! Thanks

Posts: 11
Joined: Apr 2012

He also has Crohn's & has been on Imuran for years. Can you contact me & let me know how you are doing & what, if anything, you have learned about this disease & the best treatment. We have 3 children. Girls, ages 8, 14 & 14 (twins). We live in the St. Louis, MO area. Thank you & I am praying for you...

Posts: 3
Joined: Nov 2011

Well, its been 7 months since my diagnosis and 120 days since my bone marrow transplant. I am doing extremely well, and my first bone marrow aspirate and imaging scans just came back showing no sign of lymphoma!

Laureen, I am so sorry for what you and your family are going through. It is a huge shock and the information available on the internet is very scarce and very scary. I will post my update publicly so others can learn from it but please feel free to contact me privately if you would like.

I want to share with everyone what my treatment plan has been and the keys that have been so helpful to my recovery so far. I am being treated at Memorial Sloan Kettering Cancer Center in New York. I chose this hospital because they have treated over 10 cases of HTCL in the past few years and they have several patients in multi year remission. Anderson in TX is another cancer center that has treated several cases with some success. Most other cancer centers in the country will have rarely if ever treated this disease before and if you can't go to someplace very good, I would demand that your oncologists contact specialists directly for advice. The best and most current treatment options for this disease have not yet been published!

By definition HTCL is already stage 4. Most people feel that chemo is needed to "knock back" the cancer before a treatment like bone marrow transplant is attempted. Some doctors want to see nearly complete remission before attempting transplant. Others have gotten transplants even if they could not get into full remission with chemo first.

Chemo is going to be the first line of action for most patients. You will want something more aggressive than CHOP or single agent protocols. These protocols have never cured HTCL to my knowledge. Even CHOP R is probably not enough. The two protocols used with some success have been Hyper CVAD (used at Anderson), and IVAC (used at Sloan). I don't believe there is a consensus as to which one is better than the other. I received in total 4 rounds of IVAC before going to transplant. I was NOT in complete remission when we made the decision to go to transplant but I was very close. One last round of IVAC and several doses of Compath (which I think was critical) were given and I had an aspirate the day before transplant. The results didn't come back until after the transplant, but they showed that I did reach a complete remission with the last round of treatment!

While you are doing chemo you should begin the search for a bone marrow donor as this can take some time. There are several options as far as the type of BMT, but I personally think that an ALLO is the only way to go, if the patient is strong enough to tolerate it. If you use your own stem cells there is a higher risk of reintroducing the cancer. I was lucky in that my sister was a 12 out of 12 "perfect" match.

Before the transplant I received 2 days each of cytoxan and thiotepa, and I was given 11 doses of total body radiation over 4 days.
After transplant I was given methyltrexate and KGF to help prevent graft vs host.

The transplant is a very scary and intense experience. Nothing fun about it really! I was lucky to be in and out of the hospital in only 3 1/2 weeks but some people take significantly longer. Since I got out I have been steadily regaining weight, regrowing hair, and getting my stamina and strength back. I did have some minor GVH signs at around the 2 month mark, including an itchy skin rash which was successfully treated with Lidex steroid cream, and some GI upset which has been treated successfully with Budesonide. I currently take Tacrolimus for immune suppression, acyclovir as an antiviral, posiconazole as an antifungal, pantoprazole, budesonide, and magnesium supplementation.

I hope my info can help others. I am by far not out of the woods yet, but I am feeling great and getting back to living a healthy and fulfilling life instead of just surviving. Good luck everyone.

Posts: 11
Joined: Apr 2012

Please, I cannot find a way on this site to private message you. My email address is: redelstein@centurytel.net
Could u please contact me immediatly?! I would like the name of your Dr. in charge so that I can give it to the specialist (Dr. Nancy Bartlett, Barnes Jewish Hospital/Washington University School of Medicine/Sitemann Cancer Center)when we see her. If she ever calls back. Still waiting...get this, she only see's new patients on Wed. & Thurs.!!!! Or, I will contact your Dr. directly. I do not know where to turn. I will get on a plane to your Dr. if necessary!!! I may need you to give permission to release your treatment records to her. From what I am understanding, time is of the essence!!! Thanks so much!!! I am so happy to hear you are beating this thus far!!! I will pray everyday for you!!!

Posts: 2
Joined: Feb 2011

i wrote in February 2011 about my close family friend who was diagnosed with HSTCL and i just want to share the news that he is currently in remission.he had chemo and radiation. his brother was a perfect match and he had a successful bone marrow transplant about one year ago. he was lucky enough to celebrate his 55th birthday this May. i don't know the exact details of his treatment. He lives in Los Angeles and is a Kaiser member. All Kaiser transplant cases/cancer sufferers are automatically transferred to City of Hope for their care. His primary doctor was Dr. Cai. So if you have Kaiser and live in this area, or are looking for a referral to a doctor with a successful outcome for HSTCL, you can contact him at City of Hope in Arcadia, CA. All my best to all the people on this discussion list.

Posts: 237
Joined: Nov 2011

Having a twin is ideal. And, his response to the treatment also appears ideal. This is always good to hear. Thank you for updating us.

Posts: 11
Joined: Apr 2012

I am in St. Louis, MO. My husband currently has just finished his 3rd round of IVAC chemo. His bone marrow biopsy after the first round showed NO LYMPHOMA! Our Dr.'s, Nancy Bartlett, M.D.PHD. & Dr. Amamanda Cashen,M.D., @ Siteman Cancer Center/Washington University School of Medicine/Center for Advanced Medicine/Barnes Jewish Hospital, are using the same regimen of treatment as what they used at Sloan Kettering to treat Zwhitman who posted here. This includes at least 3, possibly 4, rounds of 5 day inpatient/infused IVAC Chemo with about 2 1/2 to 3 weeks in between rounds, followed by a Bone Marrow transplant 4 weeks after completion of the rounds of Chemo. ZWhitman is currently 6 months post transplant & CANCER FREE!! There are others who have found successful treatments. DO NOT GIVE UP HOPE. DO YOUR RESEARCH & SEEK MEDICAL ATTENTION FROM AN EXPERT IMMEDIATELY. TIME IS OF THE ESSENCE WITH THIS CANCER!! If anyone needs more information, my email is: redelstein@centurytel.net CSN does not alert you in any way about responses or messages, so, the best way to contact is through email....There is HOPE!! BELIEVE!!!

BACKROUND: My husband had a recurring high fever every several days, night sweats, chills, fatigue & bloated feeling. After seeing his G.P. (we thought he was going to find that he had Lyme Disease, as we had found a tick on him a few weeks prior) it was discovered that his spleen was extremely enlarged & his blood counts were severely low. He did all of the appropriate testing & he sent us to an oncologist w/o waiting for the test results (suspecting some sort of Lymphoma). The oncologist sent us for a bone marrow biopsy. The results came back quickly showing positive for Lymphoma but further examination of the cells revealed that it was Hepatosplenic Tcell Lymphoma. His oncologist nor the 5 associates he worked with had ever heard of this type of rare Lymphoma. Supposedly there have only been 100 reported cases of this disease, EVER, WORLDWIDE!! I am starting to question this however. We were referred to a Professor at Washington University school of Medicine/Siteman Cancer Center for Advanced Medicine/Barnes Jewish Hospital in St. Louis, MO (our hometown) Dr. Nancy Bartlett, M.D. is a renowned Oncologist who has very impressive credentials. She is working in conjunction with Dr. Amanda Cashen who is a Bone Marrow transplant specialist.
My husband has Crohn's Disease. He had been taking Imuran, an immunosuppressant drug for approx. 6 years. This drug completely controlled his Crohn's Disease. However, we were COMPLETELY unaware of the risk associated with this drug. When he was prescribed the drug his G.I.Doctor DID NOT educate us about the risk & at that time, the patient information packet did not include the risk warning like it does now. His G.I. Dr. also did not continually monitor him, or do any routine testing. As a matter of fact, he has not even seen him or sent us an appointment reminder card for 3 plus years. He just kept filling the script through express scripts & the Dr. kept signing off on it. When I looked the drug up recently, I found that the recommendation is for the patient to be continually monitored before, during & for 2 years after discontinuing use of this medication. Oh, & I forgot to mention: THIS DRUG IS NOT FDA APPROVED FOR THE TREATMENT OF CROHN'S OR COLITIS!!!!!!

Posts: 3
Joined: Nov 2011

Just an update... It has been just over 1 year since my bone marrow transplant and I am still in remission!  I am back to living a mostly normal life.  I was almost weaned off the immune supression completely when I started having some mild graft vs host reactions (mouth sores, and dry eyes... nothing too severe or painful).  So I have had to go back up on the tacrolimus for a little while.  With each passing month it has started to feel more real that I could beat this.  There is hope people!  

And to the woman asking about surgery for her son's crohns... I would take immunosuppresion over a colostomy bag any day.  The risk of this terrible dissease is very very small and the chance that remicade/humira/etc could help your son is very great. 

Posts: 2
Joined: Sep 2012

I understand your concern with your daughter. My son was diagnosed with Crohns at age 18, he is now 24, and has become unresponsive to steroids and methotrexate. We had no idea how bad Crohns could be.... He recently had a Sigmoid abscess which couldnt be drained, and has been told Remicade is the only answer unless he has a full Ileostomy which is removal of his whole large intestine and a permanent stoma bag, due to the fact that his intestine is too ulcerated to repair.
We live in Australia, and I have been to numerous specialists, and they all are pushing Remicade.
Of course as a parent we dont want to take any chances with our childrens health, and although my son is now 24, he does rely on our opinions...
After reading posts on here from all these beautiful people who some have experienced Hepatosplenic t-cell Lymphoma it just breaks my heart, and I wonder if they had the choice of having a Stoma bag in place of immune suppresants, would they take the chance...?
I see your post was November 11, have you made a decision yet for your daughter?

jj4christ's picture
Posts: 1
Joined: Sep 2013

I am a 41 year old woman who has had Crohn's since around age 9, though not diagnosed till 16. It was my tissue in a petri dish from a terminal illieum resection in 1991 that helped discover the first genetic markers for Crohns. Since then I also have asthma, sleep apena(centraized), celiac, PPG, colostomy, reactie arthriis, and fibromyalgia. Let's just say I have been on everything at some point in my life. Imuran (6 months), methodraxate, prednisone, Remicade (6 months), Humira (6 months, stopped due to giantic aggressive benign olvary mass; reported to FDA by manufacturer as adverse event.) Currently on prednisone 40mg (3 1/2 weeks) and 6-mp (9 yrs.) In 1991, I was on a trial drug that caused this type of cancer in patients, I was on it for 5 weeks and screened for 2 years to make sure I did not get it.

On August 12th I took suddenly sick, night sweats, severe adominal cramping, diarrhoea and such. We thought at first food poisoning, tummy bug, etc. Everything came back negative. A week later after initial symptoms cleared up I started having whole immune system going crazy. Severe peristomal pyoderma gangrenosum outbreak, extreme fatgue, night sweats, sore thrat, sore mouth, dry eyes, dry mouth, adominal pain, cramping, pain in lymph nodes under arms, and I am swelling. I eat oinly a little food and so full. I at times canbarely walk because I am so weak. Last week had colonscopy and upper GI with follow through. No active Crohn's anywhere in the gut.

My follow up is 10/03, but I feel alittle worse each day. I know my doctor thinks wih rest this might settle down and the fibro just went way out of whack. But this is worse then fibro attack. What do I say what tests need to be done right away to make sure it is not lymphoma. I am really scared, caused I am feelin worse then when that benign tumor grew in me. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1050
Joined: May 2012


Geeze... you have a list of problems for your doctors to choose from !   Since you do not mention previously having had cancer, I would not at this point jump into worrying about Lymphoma. although it certainly, of course, needs to be considered and ruled out.  It sounds like the docs are working your case fairly aggressively -- a good thing.  The symptoms you mention that can suggest lymphoma are the night sweats, weakness,  and swollen nodes, but numerous other problems can cause these as well.  Most commonly, cancerous nodes do not hurt, but they can. 

Ask the doctors if a PET scan is medically justified at this time.  In many places today, the CT and PET are combined into one "ride through the doughnut," which reduces cost verses two independent tests.   A PET would almost 100% determine if there is cancer going on, if they have not by now figured out what the issue is.  With the swelling, I am assuming you have been checked for renal function ?

When you know more, it might be more convenient for all if you start a new Thread, which is as easy as responding here anyway.  This was a years-old discussion of mostly T-Cell lymphoma, a very rare and difficult to treat strain.     I hope to here something good from you soon,



Posts: 1
Joined: May 2014

Hi all,

Just wanted to offer this regarding my personal knowledge of a complete remission case of this rare disease.  My twenty-four year old nephew was diagnosed in 2000 with Hepatosplenic T-cell Gamma/Delta Lymphoma.  He lived in Florida at the time and went up to New York to be treated at Sloan Kettering.  He was there for about a year during which time they treated him with chemo (not sure which kind), radiation to the spleen, two stem cell transplants (his brother was the donor), a monoclonal antibody therapy during the second stem cell transplant (Campath), and ultimately they removed his spleen.   He left New York almost one year to the day he entered the hospital and returned to Florida.   That was fourteen years ago and he is alive and fine.

You can read a little bit about what he inspired here:




Posts: 11
Joined: Apr 2012

Thanks so much for sharing your story!! This thread was instramental in helping us when my husband was diagnosed with HSTCL in 2012. He is also completly cancer free after chemo, radiation & a allogenic bone marrow transplant. I have a facebook page that I am trying to get everyone to share their stories on. If you just search: Hepatosplenic Tcell Lymphoma HSTCL Support Page it will come up. Apparently, I cannot put a direct link here. I think it is important to provide info to those that are doing internet searches regarding this disease. The majority of what comes up when you do a search is so grim. Also, you can email me with your story. redelstein@centurytel.net  

Posts: 5
Joined: Jul 2014


Nope you are dpoing well I would like to chat with you if possible my daughter have jsut been diagnosed with the exact same as you. Please let me know.


Thank you


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