Hepatosplenic T-cell Lymphoma

felprnla said:

update
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.

catscanmom said:

WORRIED MOM TOO!!
MY DAUGHTER HAS RECENTLY BEEN DIAGNOSED WITH CHROHN,S DISEASE.SHE IS ONLY FOURTEEN
AND WE ARE ALSO BEING PRESSURED AS PARENTS TO PUT HER ON SOME MEDICATION LIKE 6MP AND REMICADE.FRIGHTENED OF ALL THE TERRIBLE SIDE EFFECTS,WE HAVE CHOSEN TO GET A SECOND OPININ AT MAYO CLINIC.WISH TO GET ANY HELP FROM SOMEONE THAT HAS ANY SUCCESS WITH HOMEOPATHIC
METHODS.THESE DRUGS SEEM LIKE POISEN FOR SUCH YOUNG ,GROWING CHILDREN TO BE ON.
SO SCARED SHE WILL DEVEOPE CANCER BUT HER DR SAYS SURGERY IS NOT AN OPTION UNLESS WE TRY THE MEDICINES FIRST.
CAN SOMEONE PLEASE HELP ME WITH THEIR THOUGHTS.

zwhitman said:

An update
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.

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. 

jj4christ said:

I am scared! What do I need to do?

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. 

JJ,

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,

,ax

777Driver said:

Hepatosplenic T-Cell Gamma/Delta Lymphoma

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:

 http://www.garrykravit.com/fpol.html

 

 

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  

mark6016 said:

t-cell lymphoma
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

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

CharlieBee said:

Any help
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

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 

GodhealedCTR said:

Hepatosplenic T-cell Lymphoma - >10 yrs in remission
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.

I was very touched from your story , and remission of 10 years just gave me hope , my brother who is only 21 was dignosed with Hepatosplenic lymphoma 5 months ago ,we all knew that its an aggressive deadly cancer , but we decided to go on and never lost hope , my brother got better with chemo which is IVAC and his LDH went dowen to normal level only that after 3 weeks of finishing chemo and planning to go through transplant his Lymphoma came back again and he was sent home yesterday , and told us that they have nothing that they can do more and the disease will kill him shortly m we are only 4 sisters and my mum watching our beloved and waiting for his death hopless my mother is devestated ,we live in Dublin Ireland and we are considiring to go to the states to start a new treatment because watching someone to die was never a plan and unfair for any human to go  through if you can help me with the name and place of the medical centre you are went through with your treatment we will be greatfull

Thank you ,and God bless you for your inspiration  

GodhealedCTR said:

Transplantation Protocol
Hello Margie and Angelli

I'm really sorry for the delay in my response. My hematologist has emailed me my 1999 Transplant Protocol and I have in turn emailed them to you. Hopefully it helps with your loved ones' treatment.

Angelli, my bone marrow involvement was as per Gretchen's son's experience. It was unremarkable and not detected after 3 (wet and dry) bone marrow biopsies. When I spoke to my hematologist last week, he confirmed that I definitely had Stage 4 Hepatosplenic T-Cell Lymphoma; even though most of the paperwork stated "Non-Hodgkin Lymphoma".

If anyone else wants a copy of my protocol carried out in 1999, please post your email address and I will forward it to you.

I strongly encourage you to speak to your doctors to carry out the transplantation without waiting for your loved ones to go into remission. If you read my treatment regime above, I reiterate that with this aggressive disease, I firmly believe that the unrelentless regime of chemo and back-to-back transplantations was the only way to overcome the disease. Word of caution though, my hematologist said that the protocol is very strong so the protocol needs to be approached with care, taking into consideration the patient's condition (mental and physical).

The prognosis for HSTCL survival is very bleak. Of course, all glory goes to the Lord for guiding the medical team. I hope that my survival from this horrible disease will provide a glimmer of hope. Stay positive and have faith in the Lord!

God bless,
C.Theresa
Perth, Western Australia

Hello I replies to your post earlier can you please send me the protocol my brother is suffering from HSTCL and he was sent yesterday home were they told us their is no more hope  , m email is bunny1723feb@yahoo.com

GodhealedCTR said:

Your 17 year old
I'm so sorry to hear about your daughter's diagnosis at such a young age. I had both autologuous stem cell transplantations ("ASCT") done in the Bone Marrow Transplant Unit at the Royal Perth Hospital in Western Australia. After 3 courses of chemos, the cancer kept coming back in the form of a fever. The hematologist went ahead with the ASCT even though all my blood results were dismal and the lymphoma was still in my liver. I am really puzzled reading the conversation thread on this website about the doctors waiting for the patient to go into remission before embarking on transplantation. With the aggressive nature of HTCL, if my specialists had waited, I might not be here today. I firmly believe that the unrelentless chemo followed by back-to-back ASCT 7 weeks apart was the treatment that beat the cancer. I would be pleased to help you with any information you may require. Please give me your email address, if you desire, and we can discuss privately.
God bless.

Hi God healedCTR

I ma very happy for you, I believe to in miracles. Our doctors who treat my brother would not go ahead with the transplant unless he is in remission, his cancer to comes back in form of fever, can you let me know what is the center you went for and what is the name of your consultant please please, we are very desperate

Thank you 

Al ghazal