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Hepatosplenic T-cell Lymphoma

valkyrie31mh
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.

kymmc
Posts: 3
Joined: Feb 2003

That is exactly what I was told I had in November of 2001. I also went through the CHOP and then in May of 2002 I received a bone marrow transplant. My diagnosis was changed in Feb. 2001 to Non-Hodgkins T-Cell Lymphoma. I did a lot research and the original diagnosis just didn't fit me and I refused to accept the grim survival rate. And finally my Doctor told me about a Lymphoma specialist in Nebraska and I meet with him, and he agreed with me and told me he thought I was treatable. After my transplant I became very depressed and still have very "blue" days. I think it is because when I wake up every day I wonder if I am going to be well today. The constant trips to the doctors and the anticipation of whether or not I will "pass" my blood test, bone marrow, cat scan, etc. It is hard. I am fortunate to have a great family to support me. But, there is the dark side that is hard to talk to them about because they don't understand what I have gone through. You are the first person I have heard of that has been diagnosed with this and would really love to talk with you.
Kym

That is exactly what I was told I had in November of 2001. I also went through the CHOP and then in May of 2002 I received a bone marrow transplant. My diagnosis was changed in Feb. 2001 to Non-Hodgkins T-Cell Lymphoma. I did a lot research and the original diagnosis just didn't fit me and I refused to accept the grim survival rate. And finally my Doctor told me about a Lymphoma specialist in Nebraska and I meet with him, and he agreed with me and told me he thought I was treatable. After my transplant I became very depressed and still have very "blue" days. I think it is because when I wake up every day I wonder if I am going to be well today. The constant trips to the doctors and the anticipation of whether or not I will "pass" my blood test, bone marrow, cat scan, etc. It is hard. I am fortunate to have a great family to support me. But, there is the dark side that is hard to talk to them about because they don't understand what I have gone through. You are the first person I have heard of that has been diagnosed with this and would really love to talk with you.

Kym

FrankMN
Posts: 1
Joined: Apr 2004

Hi there!

My name is Frank. I'm a 24 year old student from the Netherlands. Four weeks ago my girlfriend's sister got ill (constant high fever, sweating etc.). After the usual tests for virusses and bacterias the doctors diagnosed the hepatosplenic T-cell Lymphoma (about a week ago now). She lives in Scotland and was studying to be a fine doctor herself someday (28 years old). Now things are different. Yesterday I returned from Scotland (Edinbrugh) to the Netherlands after a first critical period (she got the first CHOP-chemo). Fortunatly she seems to respond to the treatment, despite a fever (39C) which worries us all. The great risks in this stage is the chance of the cancer returning before the next chemo-cycle (3 weeks), or a possible infection. For the family its hard to see her brighten up at the moment, whilst knowing the grim survival rates. In my attempt to find more information on the internet I passed this website, and saw your messages. How are you doing right now? Given the rariry of this type of cancer I thought I should respond. I looked up several treatments: bone-marrow transplants (from herself or from her brother/ sister) and radioimmunotherapy. The doctors said the latter was only common in the case of B-cells. What are your experiences? Do you know why this cancer is mainly found with young males? And have you ever considered a holistic treatment rather then, or in combination with conventional approaches? I myself tend to see things from the scientific perspective, but I feel I can't 'permit' myself to 'miss' any important information. I don't think we'll have a lot of opportunities to chat due to the time gap, and I can't share my personal experience with the desease (because its my sister in law), but I'm interested in how you are doing and how we could possibly share some experiences/ stories/ information. I will check this site frequently, and maybe be could chat sometime. For now I wish you both all the best.

Kind regards,

Frank

ncampbell722
Posts: 11
Joined: Sep 2009

My nephew who is 20 was diagnosed 3 weeks ago, he is in ICU currently and visitors are not allowed due to his compromised immune system. His Dad, who is my brother asked me to look up the drug Remicade which my nephew was taking for about 3 years followed by Imuran for about one year. One of the adverse side effects of these drugs is Hepatosplenic tcell lymphoma. He was taking these meds due to ulcerated colitis. The MD's were checking his blood on a regular basis and I'm not sure if they were actually looking for signs of infection or if they even knew this was a side effect of this drug. He was admitted to the hospital on a Friday after they called the doctor back and told him he was very ill so they finally admitted him. On the next day (Saturday) he had his spleen removed he was diagnosed on the following Wednesday with t cell lymphoma and was to be transported to Seattle, WA for 2-4 months of treatment followed by a bone marrow transplant. They were to leave that Friday, however on Thursday he began internal bleeding (of the liver) and underwent surgery which prevented his transport to Seattle. On Friday he went back to surgery for observation and was induced to a comatose state which lasted about 6 six days. Following chemo he underwent dialysis since his kydneys could not recylce the residual cancer cells fast enough. He is currently in ICU fighting for his life and the physicians here have never mentioned the fact this disease could be a result of the Remicade and Imuran meds. There is website called CaringBridge.org where you can keep the family in contact regarding condition and to receive messages. Please let me know if you would like to access his website and I will give you specifics. I am desperately searching for any info leading to his recovery.

CharlieBee
Posts: 2
Joined: Jul 2011

Hi all,

My husband was diagnosed with this horrible disease back in march this year. After ESHAP and mini-BEAM chemo, he has not been able to keep it at bay long enough to go ahead with the transplant required. They told us this about 3 weeks ago.
He had a donor ready, which was a grey match apparently and we had high hopes, but the disease is just too aggressive, coming back within 2 weeks all the time.
He has come home now, we have not asked how long he has, we dont want to know, but he is just so poorly!! I am at my wits end trying to keep his temperature down and not be sick. He is taking an oral chemo tablet and steroids, but I am just so scared everyday.

Is there anyone who knows a thing that will help us?

He has this disease because he took Azathiaprine tablets for his crohns disease, he is only 28. It is just so unfair and so sad to see how much pain and suffering he is going through.

I look forward to anyone's response.

Thank you

Charlie

mark6016
Posts: 7
Joined: Jan 2012

my wife was dianosed with this horrible cancer five years ago and had a auto transplant at m.d.anderson but it came back last year and spread into her liver .So she went back to M.D Anderson but they sent her home to die we contacted a doctor in bardstown kentucky and he put her on a experimental chemo in june and now she is cancer free and going to vanderbilt for a stem cell transplant. if i can give you any information just let me know

LaureenRitchSTL
Posts: 12
Joined: Apr 2012

My name is Laureen. My husband, Ritch has just been diagnosed. Desperately seeking treatment info. & Doctors. Email: redelstein@centurytel.net phone: 314-974-6713 St. Louis, mo area

mark6016
Posts: 7
Joined: Jan 2012

if you get this and need to talk to my wife gina she went through this twice she would be happy to talk to you she was given up for dead and thru god and a new chemo ginas cancer free you can contact her at angel99g@gmail.com

angel99g
Posts: 2
Joined: Jun 2012

hi my name is Gina Sprowl my husband contacted you his name is mark i have had lymphoma twice know the first time was in 2006 i had a stemcell transplant an auto where you use your own cells and was cancer free for 3 1/2 years i did the transplant at md anderson clinic but it came back in 2010i went back to md anderson to see what they could do but this time it was in my liver and md anderson could not get my counts to recover so they sent me home on hospice to die but god had another plan for me i went to see my local oncoligist dr. monte msrtin he had a new drug that just came out and we tried it it was a 5 minute chemo 1 time a week for 16 weeks my counts recovered and i was cancer free in 2011 so my doctor recomended me to go to nashville at vanderbilt clinic i did a stemcell transplant we did use my sisters stem cells this time and am now living cancer free
if you have any questions please let me know i will try to answer them for you
where are you from i am in louisville kentucky

Gina Sprowl

LaureenRitchSTL
Posts: 12
Joined: Apr 2012

Hi Gina, I am composing an email to you now. 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 below. 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 6 weeks after completion of the rounds of Chemo. ZWhitman is currently 6 months post transplant & CANCER FREE!! 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!!!

ncampbell722
Posts: 11
Joined: Sep 2009

Gina,

I decided to view this site again because this Friday it will be three years since my nephew Eddie passed away with this horrid disease and we live in Louisville Ky. When I read your post I was shocked to hear there was another case of HSTCL here in Louisville, so if there is anything I can help you with please let me know. My email address is ncampbell722@att.net if you would like to contact me.

I hope you are doing well and that you beat this horrible disease.

Warm regards,
Nancy Campbell

monda
Posts: 15
Joined: Jul 2014

Hello,

 

Iknwo your postinmg is 2 years ago I truly hope your wife is doing great. My daughter has jsut been diagnosed with the same thing and can use any and all information she has an enlarged spleen at the moment - any thing you can share would be shed some light and hope and the mometn.

Thnak you in advance,

 

Monda

danyabushey
Posts: 6
Joined: Oct 2014

Hello Monda,

Here's my quick story. Let me know if you have any other questions or are looking for specific info.

My nephew, Brian, was diagnosed with HSTCL in Feb., 2012, 1 week before his 18th bday. It was a result of being on Remicade for Crohn's disease. We found a specialist at Memorial Sloan-Kettering Cancer Center in NY (MSKCC) and he provided the chemo protocol for the children's hospital in our area (Virginia Beach, VA) to implement. Brian underwent 3 rounds of chemo and then had an allo bone marrow transplant in NY at MSKCC on May 30 of that year. 2.5 years later and he is cancer-free and doing great.

How we found our dr....after doing some internet research, I found very little info but did see a few specific hospitals pop up as having treated patients with HSTCL. I reached out to Dr. Anas Younes, who at the time was the director of the Lymphoma Dept. at MD Anderson, which is the No. 1 cancer center in the country and had some experience. Based on our closer location to MSKCC, he recommended them. Of note, Dr. Younes moved to MSKCC this past winter; MSKCC is the No. 2 cancer center in the country. At the time, he recommended Dr. Steven Horwitz and after looking him up on the MSKCC website, I knew he was our guy. He has treated the most patients with this rare form of lymphoma, and has the best success rate. MSKCC is an amazing facility and I cannot speak highly enough of them. The bone marrow transplant process is extremely tough but the transplant team at MSKCC is the most competent and compassionate medical team you could want.

FYI - HSTCL is an extremely rare and aggressive lymphoma. At this time, an allo bone marrow transplant is the only known "cure" and it's essential to get it rather quickly - after 2-4 rounds of chemo. Not an easy feat when dealing with insurance and trying to navigate a complex healthcare system.

Please let me know if you have any additional questions. You can ask here, or email me directly at danyabushey@hotmail.com.

~Danya

 

Alghazal
Posts: 4
Joined: Nov 2014

Hi Mark

Hope your wife is keeping well. My brother 21yrs old has been diagnosed with this disease this June 2014. He has been given several types of chemo but non work GDP, Pentostatin, and IVAC ....he has been send home for pallitave care which he really does not need as he looks much better then he went to the hospital in the first place thank you God, he still believes there is something out there, can you give me more details about the MD anderson and Bardstown Kentucky ASAP, as I live in Ireland and we are trying to travel next week to seek help...

Thank you 

Logien

 

Thank you all for sharing your stories and honesty as it makes the world a better place, wishing all the best 

Lubna
Posts: 6
Joined: Nov 2014

Hi Charlie :

 My name is Lubna from Dublin Ireland ,How are you and how is your husband , your story really touched me because my brother who is only 21 years old have a hepatosplenic lymphoma went through IVAC chemo, and the lymphoma came back in only 3 weeks after 4 months treatment , we had hope for him to go through transplant but it didnt happen  , he was sent home just yesterday and we are very depressed and my mum is devistated watching her son suffering physically and emotionally waiting for nothing  , he had an autoimmune disease were he after developed cancer because of the Immurane that he was takeing , I saw the date of your story back in 2011 if you can help me or have any advice for me I will be greatfull 

 Thank you , God bless you and your family 

yesyes2
Posts: 464
Joined: Jul 2009

Hello Lubna,  My name is Leslie and your plea for help is so very heart felt.  I'm sorry your brother , you and your family are having to deal with this.  Please go up 2 posts from yours to Danyabushey.  I believe he has information which could help you.  You could email him at danyabushey@hotmail.com.

I hope this will help you.  God bless, my prauers are with you.

timsgal
Posts: 3
Joined: Apr 2009

I too have been diagnosed with Heptasplenic t-cell lymphoma. I am presently at MD Anderson in Houston for a second opinon. I was first told in July I had autoimmune hepatitis after steriod treatment failed they sent me to Tulane in New Orleans a liver biopsy was done and that was the findings. After a bone marrow biopsy and ct as well as a second liver biopsy it showed I had no other involvement other than liver - not spleen or bone marrow which was surprising. It does not fit the normal criteria. Only in liver, rare but very possible. That is why I am having the second opinion. If I have to go through all the chemo and tansplants then I have to make sure. I will have my third set of biopsies tomorrow and hopefully have a definate answer by friday. The only symptoms I had were terrible fatigue, some fever at the beginning, and pain in my upper right side. Those symptoms persist to this day. I also had the fullness after any consumption of food or drink. It is so hard to find good info online but I do know it is very rare and very deadly. I am still holding on to the fact they have miss diagnosed me but the test done at Tulane were very extensive. I am scared and just cant believe what has happened.

Jer8226
Posts: 1
Joined: Apr 2009

Hey timsgal,
My brother was recently diagnosed with Hepatospelic T-cell lymphoma also. He just recently left MD Anderson in Houston. They were able to confirm it and he started his chemo today. I really hope everything works out for you. If you are able to find any good info online please let me know. I've searched google many times and basically all I can find is lots of medical journal articles that I'm having a hard time understanding. Hope you start feeling better.

Summerwood Survivor
Posts: 5
Joined: Jun 2009

My wife was diagnosed with Hepatosplenic gamma delta T-cell lymphoma in November 2004 and is currently alive and well in Houston TX. There have been many ups and downs, but we thank God we found ourselves transferred to Houston, 30 minutes from MD Anderson, when she became ill. I am not sure what information I can share but I would like to answer any questions I can.

There is not much information out there about this very rare disease. We have always considered that a blessing because we were never confronted with survival rates or someone else's track record. She was sort of a pioneer in the survival of this type of Cancer.

ncampbell722
Posts: 11
Joined: Sep 2009

Would you please let me know if she had a bone marrow transplant, and if so how she came thru it. My nephew is here in Louisville, KY and I don't think there is anyone here who can accurately treat him for this horrible disease. Would you also please let me know the physician you received treatment from, I would certainly appreciate any help, as time is of the essence.

Summerwood Survivor
Posts: 5
Joined: Jun 2009

My wife had a Bone Marrow Transplant in May 2005; actually, it was a stem cell transplant from a Matched Unrelated Donor. She did not have a very difficult time with the transplant; although she still suffers from mild skin irritations.

My wife was treated at MD Anderson by Dr. Sdran Verstovsek. He is primarily a Leukemia doctor, but he has an interest in rare types of blood cancers. I would suggest you search MDAnderson.org for more information.

ncampbell722
Posts: 11
Joined: Sep 2009

I will certainly research this physicican I have been searching for someone anyone who has experience with this type and it has been very difficult to find anyone with this type of expertise. My nephew Eddie was diagnosed with Stage IV hepatasplenic t cell lymphoma and it has been an absolute nightmare trying to research and keep up with all involved. Would you please let me know if your wife had ever taken the drug Remicade or Imuran. The reason I would like to know is that this type of lymphoma is one of the adverse side effects of this medication, Eddie was taking this medicine for about 3 years for ulcerated colitis.

Thank you so much!

Summerwood Survivor
Posts: 5
Joined: Jun 2009

You're welcome. My wife has never taken Remicade or Imuran. Her Lymphoma symptoms just developed in late November 2004.

angel99g
Posts: 2
Joined: Jun 2012

i am also in ky i had to go to md anderson in texas and vandebilt in nashvillei had to move there for 6 months nasville offers free appartments to transplant people
you should call vanderbilt
my doctor is in bardtown ky.

Gina

Lubna
Posts: 6
Joined: Nov 2014

Hello :

My name is Lubna from Dublin Ireland , My brother was diagnosed with hepatosplenic lymphoma just 5 months ago he took I vac chemotherapy and it worked and they were planning to put him through transplanrt , unfourtuntally in only 3 weeks the lymphoma came back again its very aggressive and he was sent home yesterday telling us that he has few months or less to survive , my mother and us (his sisters ) are suffering with him waiting for his day can you please tell me if their is a center that we can go to in the states even if it was under clinical trials , we are so despressed seeking for help, Please Please 

Thank you 

ncampbell722
Posts: 11
Joined: Sep 2009

Hey Jer8226
I hope everything is going well with your brother, I have a nephew who was diagnosed 3 weeks ago with this same lymphoma and I have been on the search as well. The more I read about it the more I understand and the deeper I dig. I have a question for you if you would please let me know if your brother was ever taking such drugs as Remicade or Imuran. As both of these drugs list on the label that Hepatosplenic t cell lymphoma is an adverse side effect. These drugs are used to treat rheumatoid arthritis, Crones disease and ulcerative colitis. I look forward to hearing from you.

Gretchen Harder
Posts: 13
Joined: Dec 2009

Our 24 year old son has HSTCL and is living in Seattle with his mother to receive treatment at SCCA.

We met a family from Kentucky in September (or early October) whose son named Eddie was dealing with the same issue and being treated by the same doctor.

We would like to re-connect with the family especially if they are still in Seattle.

My cell phone is 509-551-8675

Also, my husband (John) and I are interested in what you have posted on the Cancer Survivor Network website on which we've registered today. We also believe that the medical risk posed by the popular drugs is being underplayed by the system, and we don't want this risk to continue harming others due to this 'silence'.

sincerely,

Gretchen Harder

erm
Posts: 16
Joined: Dec 2009

Dear Gretchen and John,

My son Chris died of HSTCL in May of 2008, after receiving Remicade and 6-MP to treat his Crohn's Disease for roughly 2 years. Was your son also being treated for Crohn's Disease or Ulcerative Colitis before he developed HSTCL?

I fully agree that the risks of these "miracle drugs" (biologics used in combination with thiopurine immune-suppressants) is much greater than supposed. The problem is getting FDA, the medical community, or the media to pay attention to the issue. I have sent FDA and the media a number of letters to no avail.

I am hoping to connect with others whose family members have been diagnosed with HSTCL, and to continue trying to break the silence and misunderstanding that surrounds the connection between these drugs and HSTCL. To that end, I have two requests: please report (or ask your son's oncologist to report) his illness to FDA through the "MedWatch" system; and please contact me if you are interested in finding ways to expose the risks posed by biologic and thiopurine immune-suppressants.

Thanks,

Ed Morawetz (erm) ed.morawetz@verizon.net, or by cell at 703-346-7183.

Gretchen Harder
Posts: 13
Joined: Dec 2009

Hi, Ed,

Yes, our son was diagnosed with Ulcerative Colitis in late 2002, age 17. He is now 24. He has been treated with Asocol and Azathioprine since diagnosis. We were looking into seeing if we could get him off of the azathioprine, because of concern for the dangers the drug posed. Rob's UC was pretty stable, no major flares for awhile. His blood counts were being monitored by his GI. In January 2009 the dr. noticed something amiss, had him get more blood work done, ultimately took him off of all meds and then referred us to a hematologist when the blood counts kept going down. Initial bone marrow biopsy ruled out cancer, and it was several months before we were sent to Seattle, when Rob became critical and they didn't know what was going on.

Rob has undergone a number of chemotherapy regimines since being diagnosed with HSTCL in late July. None have gotten him into remission long enough to proceed to stem cell transplant. We are running out of options.

John and I would also like to connect with others whose family members have been diagnosed with HSTCL. We will definitely report to the FDA. We are a little stressed right now with Rob's treatment, so may not be readily available, but will plan on being in touch.

Gretchen Harder
gharder@charter.net
509-551-8675 (cell)

mww94602
Posts: 2
Joined: Oct 2009

Ncampbell - My younger brother was diagnosed with HSTCL in 7/07. He was also 20 and turned 21 following the diagnosis. He passed away from the cancer in 12/07 before he was able to have a stem cell transplant. He took Remicade and a drug called 6MP for several years, also for ulcerative colitis and all the doctors agreed this was the cause of his cancer. I'm so sad to read about your nephew (sometimes I search for the cancer to see if any progress has been made in treatment or if there are any new reports since it is so rare and seems to always be caused by these immunosupressant drugs.) The only advice I can give is that Dr. Owen O'Connor at Columbia Presbyterian has a clinical trial of a new chemo for T-cell lymphomas called Pralotrexate. (Not totally sure that is the right spelling.) My brother did not respond to chemotherapy (Hyper-CVAD and then PEGS). He was supposed to eventully have a stem cell transplant at Stanford, but he was never in remission long enough. We are from California and we took my brother to NY to see Dr. O'Connor. He was going to have his spleen removed so that he might be eligible for the clinical trial (he had to have a certain platelet count and his spleen was destroying the platelets which was why it needed to come out), but he passed away in NY before anything could be done. There are very specific requirements for admission to the clinical trial, so your nephew may not be eligible given his condition, plus I do not know if you have to be in NY or not, but who knows...everything is worth a try at this point. You might want to try contacting him. You should be able to find his email on the internet. I truly hope your nephew makes it. I am so sorry and I wish you and your family all the best.

ncampbell722
Posts: 11
Joined: Sep 2009

I am so sorry to hear about your younger brother, I know first hand how devastating that must have been for you and your family. The death of such a young man is a life altering event that is so difficult to overcome. I know I struggle with all the why's and how could this have happened and the desperate need to find someone who has this in common is somehow a blessing and a curse. I never in a million years ever dreamed such a tragic event could happen to someone in my family again. Now here we are hoping, praying and fighting right along with my nephew Eddie to somehow save him and make him well again. I guess the hardest part is being so helpless and not being able to do anything really to help him survive, and this is without a doubt the most difficult experience of my life.
If you care to respond to my message I would just like to ask you a couple of things regarding your brother's Remicade treatment, if you don't mind that is. I was just wondering if the GI MD told your brother the warnings about this medication and if the MD actually monitored his blood during treatment. Eddie's doctors have said this diagnosis has nothing at all to do with UC. I have reported this occurrence to the FDA and to Remicade manufacturers. Since the MD's here have declined any involvement with Remicade I just wonder how many cases go unreported for fear of liability issues. So if I could get your input I would certainly appreciate it for I know I would not want this horrible disease to affect another life or the lives of other families as it has affected both your family and mine. I think one of the only things I can do right now for Eddie is to somehow prevent this from happening to others. If you do not want or wish to respond I most certainly understand and will respect your wishes.

My best to you and your family,
Nancy

mww94602
Posts: 2
Joined: Oct 2009

Hi Nancy,
You can email me at mww94602@ymail.com.

alcorn
Posts: 8
Joined: Sep 2009

Hi there - if I can help in any way would love to do so. Just lost my husband (aged 45) to this disease here in Belgium. Am distraught at how aggressive it was (it took 6 months from diagnosis till the end, during which time the chemo had virtually no effect whatsoever). I too am upset that it appears to have been caused by Imuran, an immuno suppressant he took for about six years to keep ulcerative colitis under control. Please know that someone in Europe understands a little of what you are suffering and is thinking about your nephew, willing him to get well.........if I can help on any other level please say so. The time difference (01.30 here now) may make real time communication a little more difficult, but I would love to help.....my very very best to you and your family...

ncampbell722
Posts: 11
Joined: Sep 2009

Please accept my condolences as I am sure you went through a horrible emotional six months with your husband with this terrible disease. To see him go through the pain and suffering I know was most difficult for you and your family.
I am ever so grateful to you for responding because I have researched this disease this drug the symptons and the treatments and I am still trying to find out why the adverse side effect of these drugs are not taken more seriously by the physicians when on the front page of the 57 page label is a warning regarding Hepatosplenic Tcell lymphoma that occurs in young males. If you would like to email me at any time whatsoever (I check my email many time daily) I will send to you privately. I am so looking forward to your response!!! My email is ncampbell722@att.net please send me an email at any time and we will definitely keep in touch.

Thank you,
ncampbell722@att.net

erm
Posts: 16
Joined: Dec 2009

Dear NCampbell: I lost my 20-year old son, Chris, to HSTCL on 5/2/08. He had been treated with immunesuppressant drugs (Remicade and 6-mercaptopurine) for Crohn's Disease for about 2 years at the time of his diagnosis. I ask that you or his family report his disease to FDA's MedWatch site, because FDA seems to be less aggressive than they should be in alerting the GI community to the dangers of using immune-suppressant drugs (especially in combination, and especially in young males). I have written several letters to them and have even had a friend who is staff to the Senate Health Committee try to intervene on my behalf, to no avil; they still have not responded to my urgent letters that they: compel Centacor (Remicade's manufacturer--$4 billion in sales in 2007) to conduct more thorough research about the links between immunesuppressants and HSTCL; take more aggressive steps to alert GI doctors and patients about the deadly effects of these drugs. My best to you and your family.

Ed

erm
Posts: 16
Joined: Dec 2009

Dear Alcorn--My condolences on the loss of your husband. I lost my 20-year old son, Chris, to HSTCL on May 2, 2008; like your husband, he died less than 5 months after his initial (mis)diagnosis with T-cell ALL, and less than 3 months after the correct diagnosis of HSTCL. His disease was caused by taking two immune-suppressant drugs to treat his Crohn's Disease, which is closely related to Ulcerative Colitis. He was receiving both 6-mercaptopurine (which, like Imuran, is a thiopurine drug) and Remicade, a biologic drug, for just over 2 years when his cancer developed. Our American Food and Drug Administration has been very slow to respond to the threat of HSTCL to those receiving immunosuppressants to treat Crohn's or Colitis. I have needed much help to survive this terrible loss, and I would be happy to communicate with you if you wish. My thoughts and prayers are with you and your family. Ed

myonlychild
Posts: 2
Joined: Sep 2011

Dear Erm,

I know your post is from 2009 but I just came across it. There are no words for the loss you have endured. I do not know where you find the strength go on. I am thankfull you posted on this board.

What symptoms did your son have? If anyone else is reading this and wants to tell me what their symptoms are, please do.

If you have any advise, I would be forever grateful.

Thank you. My thoughts and prayers are with you always.

timsgal
Posts: 3
Joined: Apr 2009

Did anyone out there have any confusion in the diagnosis of t-cell lymphoma. I was diagnosed with it in January of 09 at Tulane in New Oleans I have since had 4 liver biopsies 2 say I have it 2 say I dont. I have been to MD Anderson where my 3rd biopsy was done which came back negative. My dr.s at Tulane still believe I have it possible has gone into spontanious remission which I can find nothing on. I still am having problems with pain under right rib cage, fatigue and fluxuating liver enzymes. Tulane thinks I should start chemo, MD Anderson says no. I am so confused and tired of all this. Did anyone else have a misdiagnosis or problems making the diagnosis. I am going crazy here after 9 differnt doctors and all that goes with that for a year. Any imput would be appriciated. timsgal

erm
Posts: 16
Joined: Dec 2009

Hello--My son was diagnosed with HSTCL on 2/8/08, after an initial diagnosis of T-cell ALL on 12/6/07. The pathologist who made the correct diagnosis is Dr Elaine Jaffe of the National Institutes of Health. She has seen the pathology slides of all of the American HSTCL cases reported to FDA's MedWatch site, and is listed as the main author of the article on HSTCL when it was first added by the World Health Organization as a separate type of t-cell lymphoma in 2001 or 2002. I urge you to demand that your doctors send your biopsies to Dr. Jaffe for diagnosis, and I hope and pray that you will regain your health. Ed

timsgal
Posts: 3
Joined: Apr 2009

I emailed Dr. Jaffe not sure she will respond but hopefully she will. I thank you for the suggestion of her as I am at my wits end. I would be intrested to know what your sons symptoms were and if he had enlarged liver or spleen, high liver enzymes etc. What has his treatment been since correct diagnosis. How in the world did you discover Dr. Jaffe and have the confidence to send your biopsy slides? Is she located in Maryland I see that is the address on website. Timsgal

erm
Posts: 16
Joined: Dec 2009

Hi--my son Chris's oncologist knew of Dr Jaffe's HSTCL expertise and sent his bone marrow biopsies to her. She is located in Maryland, and works for the National Institutes of Health (NIH). Later, I learned that my regular MD knew Dr Jaffe, and I got in touch with her directly through him. My guess is that she might be more likely to respond if your oncologist requested that she look at your bone marrow biopsies.

My son's symptoms involved fatigue, a very enlarged spleen, and extreme upper left quadrant pain due to the spleen enlargement. I don't recall high liver enzymes, but I'm not sure about that. He was tested for mono and CMV several times before the docs decided he should have a liver biopsy. The day after the biopsy, his white blood cell count skyrocketed (going from 11,000 to 80,000 in a few hours) as the cancer apparently exploded through his blood system. It was at that point that he was (mis)diagnosed with t-cell ALL.

Chris's treatment after the correct diagnosis was high-dose chemotherapy, in preparation for a bone marrow transplant. During both rounds of high-dose chemo, Chris contracted lung infections, the second of which led to his death, on May 2, 2008. In total, he lived less than 5 months after the initial (mis)diagnosis of t-cell ALL.

Please let me know if there is any more information that would be helpful, or if there is anything I can do to help. erm (PS--did you email her at the NIH address?)

mariegary
Posts: 1
Joined: Jan 2010

Hi,

First of all, I'm saddened to read of the loss of your son. My son was diagnosed with Hepatosplenic Gamma Delta T-Cell Lymphoma in April 2009 ~ the same month he turned 18 years old. We traveled to M.D. Anderson Cancer Center in Houston, TX where his diagnosis was confirmed. We then returned to our home in NY where my son was treated with CHOP therapy as per M.D. Anderson's protocol. He was in remission by late May 2009. Once his four chemotherapy sessions (which each consisted of 4 days of inpatient chemo) was complete, we returned to M.D. Anderson Cancer Center where my son underwent high dose chemotherapy and then a stem cell transplant. As of today (1-11-10), he remains in remission and we are so very grateful. But we are also still so scared. There is little to read about this disease and what is out there is horrible and depressing.

I'm open to chatting with anyone who is interested as I think this site could be a great support to me as well as my family.

Gretchen Harder
Posts: 13
Joined: Dec 2009

Just wanted to alert everyone to a teleconference on Peripheral T-Cell Lymphoma. It takes place tomorrow, January 14th starting at 1:30 Eastern time. Go to: www.cancercare.org. It is listed on the right side of the page. Register and they will send you the phone # to link in. I understand they also podcast these conferences, so you can catch them later.

erm
Posts: 16
Joined: Dec 2009

Dear Mariegary,

Thanks for your message. I am so glad to hear that your son is in remission; that is a tremendous blessing! I know how frightening this disease is, and how difficult it is to find people to talk to who have been through this with a child or close relative. I have been in touch with several of the folks who have posted on this site, and find it to be a great comfort. I would be happy to chat anytime. If you would like to talk, my cell phone is (703) 346-7183, and my email is ed.morawetz@verizon.net.

If I may ask, was your son taking immune-suppressant drugs to treat either Crohn's Disease or Ulcerative Colitis?

Ed

Lubna
Posts: 6
Joined: Nov 2014

Hello;

My name is Lubna My brother is diagnose the same as your son this year 5 months ago  he went through chemo here in saint james hospital Dublin Ireland , but after the last chemo the lymphoma came back in only 3 weeks and havebeen sent home the day before telling us their is no further treatment to be done can you please give the name of your sons doctor  in MD anderson we are planning to go to the states as soon as posiible .

Thank you 

Lubna 

alcorn
Posts: 8
Joined: Sep 2009

Hi there everyone (especially erm who I see wrote to me in December - it is some time since I have been on this website and I see there have been quite a few new contributions).

I also see that several contributors are trying to do everything possible to create awareness of the fatal consequences of taking immuno-suppressant drugs, such as Immuran, taken by my very dear late husband for ulcerative colitis (he passed away last September from HSTCL). I just wanted to let you know that I am very happy to help with this in any way I can - if a case history from Europe would help I would be happy to write to whoever possible. I am also trying to find out to whom I should write here in Europe. Please let me know if I can help and my heartfelt sympathy to those who are going through this nightmare either as sufferers or survivors....

erm
Posts: 16
Joined: Dec 2009

Hi, Alcorn:

It's good to hear from you again. I live in Washington, DC, and have friends who work as staff on the US Senate Health Committee. I have been working with them to try to raise the US Food and Drug Administration's (FDA) awareness of and concern about the threat of HSTCL, especially to those receiving biologic and thipurine immunesuppressant drugs to treat inflammatory bowel disesase (IBD, including Crohn's disease and Ulcerative colitis).

So far, our American FDA has done little to directly address the threat, but they are compiling data on the incidience of HSTCL among IBD patients receiving these immunesuppressant drugs. They have already gathered data about non-American HSTCL deaths that have been written about in peer-reviewed European medical journals. Do you know, or is there a way to find out, whether your husband's death was reported, either to a Belgian or EU reporting site, or in a peer-reviewd medical journal? Are you in touch with his oncologist, and would the oncologist be willing to share information (with your permission, of course) with the FDA?

Thank you for your willingness to help. My hope is that people like us--who have lost our loved ones to this terrible illness--may be able to help prevent others with IBD from developing this fatal illness.

Sincerely, Ed Morawetz (erm)
ed.morawetz@verizon.net

alcorn
Posts: 8
Joined: Sep 2009

Dear erm

thank you for your quick reply. I will contact my husband's oncologist and my GP (who is exceptionally helpful) and ask if there are any channels through which the relevant information can be made available. My husband was treated at a university hospital and I understand that, as a matter of course, they share their findings with their peers, but how this information is forwarded and to whom I do not know. Leave it with me - like yourself I feel the desire to stop others from losing a loved one in such an untimely and aggressive manner. It is quite literally heart-breaking to think that this medication was responsible. For what it is worth I did ask my husband's professor if it would have been possible to detect the development of his disease at an earlier stage (he was already at stage 4, as were most of the other cases listed on this site) and he told me that, given the abrupt and aggressive onslaught of this kind of lymphoma it would have been very difficult to catch it...........will be in touch.....

GodhealedCTR
Posts: 12
Joined: Jan 2010

In 1999 at 39 yrs of age, I was diagnosed with Stage 4 HTCL - all in a matter of 2 weeks. The oncologist told my husband to prepare for the worse as I had 48 hrs to live. However, my oncologist did not give up and gave me a mild chemo as all my organs had shut down except for my kidneys at the time. After 3 days, I was out of ICU. 2 DHAC chemo within a space of weeks was administered but the fever kept coming back - an indication that the disease was back. My oncologist transfered me to a haematologist for autologous stem cell transplantation (ASCT). I was given GCSF (steriod)injections twice a day to stimulate the stem cells. It was a miracle that I had enough stem cells for 2 ASCT, with one batch of healthy cells selected. After the first ASCT, I went into a neurotoxic coma for 10 days. It was very hard on the doctors and my husband as they weren't sure whether it was the treatment or the cancer causing the coma. 5 weeks after the ASCT, I felt ready for the 2nd ASCT. My hematologist was concerned that my blood results were still flat lining and the closest back-to-back transplantation he had ever done during that time was 12 weeks apart. I felt that with the aggresive nature of the cancer, it was a risk to wait. In any case, I was mentally ready for the next ASCT. He agreed to do the 2nd on the 7th week, he changed the chemo regime and slowed down the treatment process to reduce the risk of me going into a coma again. My family and I were on an emotional roller coaster druing my battle with the cancer. The medical regime I underwent was critical to my survival. However, the strength I drew from my family's love (especially of my husband) and friends' support was instrumental to keeping my spirits up. The greatest joy I experienced during the very dark and painful period of 6 months of intense treatment was Jesus answering the prayers of mine, family and friends. At the same time, I sought supplementary naturatherapy and changed my diet to mainly alkaline foods, cutting out sugar and minimising foods that would make my body/liver work harder. Also I went for meditation classes in a bid to help cope with stress. Now after 10 years of remission, I am undergoing treatment (venesection over the last 2 years), for high Ferritin levels caused by having more than 40 units of blood transfusions in 1999/2000. This is the first time I'm sharing my miracle healing with the wider world but I felt compelled to do so, to give some hope to those experiencing this aggressive disease. I told my hematologist that he should publish the success of my treatment but he said that "one swallow doesn't make a summer". I read that some of you were waiting for your loved ones to go into remission before doing the transplantation. With such an aggressive cancer, I believe that the very draconian and intense chemo followed by back-to-back ASCT, all within a 6-month period, was instrumental in getting me to remission. However, all credit must be given to God who guided the medical team around me, carrying me through the excruciating pain and suffering, as well as blessing me with a first class husband, wonderful family and friends.

Gretchen Harder
Posts: 13
Joined: Dec 2009

Dear GodhealedCTR,

Thank you for sharing your experience. I am in awe that you made it through considering what bad shape you were in, and that gives me hope. My son was diagnosed with HSTCL in late July last year (2009) and has been undergoing treatment at Fred Hutchinson in Seattle since that time. They were going to try to do an auto transplant in November, followed by an allo transplant in January. However, after harvesting his stem cells, they discovered too much lymphoma in his periperal blood, such that they didn't want to risk transplanting lymphoma back to him. At the same time his liver function tests indicated increasing lymphoma activity in the liver. They have tried a number of other chemo regimens since November. Each one seems to have some success knocking the lymphoma down, but then it comes right back. We are about out of conventional options. My understanding is that they don't think an allo transplant will be successful, either, with too much lymphoma still in the liver.

Can you share where you received treatment? I would hope your doctor did at least share the results of your treatment with the hematology world, so that it is in the "case file." One swallow may not make a summer, but this disease has such grim statistics that any success should be noted. For instance, emr mentioned Dr. Elaine Jaffe in a post above, who has been keeping tabs on HSTCL cases. Also, were you on immunosuppressent drugs prior to your HSTCL diagnosis? Most of the cases posted here were on Remicade or Imuran to treat Ulcerative Colitis or Crohns disease.

Thank you again for sharing your experience. The statistics are so grim, that it is good to hear a success story.

Gretchen

GodhealedCTR
Posts: 12
Joined: Jan 2010

Hello Gretchen

I've been searching through the archives and unfortunately could not find my treatment regime. If you wish, your specialist could contact my hematologist: Dr Richard Herrmann
http://www.clinipathpathology.com.au/about-us/pathologists/pr-list/dr-richard-herrmann.aspx
Please give me your doctor's information and I will email Richard authorising him to release my treatment information.

My last two chemos followed by auto transplants were carried out as an inpatient at the Royal Perth Hospital in Western Australia. It is my belief that the draconian regime of 5 chemos followed by 2 back-to-back auto transplant 7 weeks apart within a space of 6 months was crucial to hitting the cancer on the head. The doctors did not wait for my blood results to improve before embarking on the next chemo. I'm not sure what your son's liver counts are but I thought perhaps I could give you mine for comparison. Just before I started the auto transplant my LFT was Bilirubin 19, Alk Phs 417, ALT 499 and Albumen 31.

Prior to my diagnose, I was in a very stressful job and travelling regularly. I was not on any immuno-suppressant drugs. Aside from feeling really tired for some time, when the symptoms started presenting itself, it went quickly to Stage 4 within a space of 2 weeks.

It's also important to have a wholistic approach towards healing - spiritual, diet, positive outlook, relaxation and avoiding infections. My prayers are with you.

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