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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.

hope-712
Posts: 4
Joined: Oct 2009

Hello Godhealed,

My 17 year old daughter was diagnosed with HTCL in October. She was perfectly healthy before. Since then she has received 6 rounds of chemo and is about to undergo her 7th round. She was supposed to go to transplant in Nov/Dec 09, but her body kept resisting chemotherapy. She has been hospitalized since Nov 09. Her last two rounds of chemo have been "salvage" chemo. Her bone marrow will show minimal cancer, but her liver is still full of lymphoma. I was wondering what your status was when you went to transplant. She is supposed to receive cord blood, but the transplant facility will not take her until she is in complete remission. Please help me. She is already in stage 4 and we are running out of time.I wanted to know where you had your transplant, also. Thanks in advance.

GodhealedCTR
Posts: 12
Joined: Jan 2010

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.

hope-712
Posts: 4
Joined: Oct 2009

Thank you sooo much for getting back to me. My e-mail address is tra_ashart@yahoo.com. I am very interested in hearing how the arrangements were made so that you could go to Australia. I am looking forward to hearing from you. Thank you in advance.

erm
Posts: 16
Joined: Dec 2009

Hello: I have been reading your posts to this site with great interest. My son died of HSTCL on 5/2/08, the result of receiving a particular combination of medications to treat his Crohn's Disease, less than five months after diagnosis. Like "Hope's" daughter, his doctors did not consider a bone marrow transplant feasible until he was in remission and, of course, he never went into remission.

Clearly, your doctors took a much different approach, and that approach (doing the transplant without waiting for full remission) saved your life. I would like to ask you several questions: (1) did your doctors ever publish the results of your treatment in a peer-reviewed journal? If so, can you provide me with the reference for the published article?; (2) If they did not publish, would they consider doing so? Doctors (and transplant centers) in the US probably will pay no attention to alternatives to their current (and ineffective) HSTCL protocol of waiting for remission, then doing the transplant, unless there has been something published that they can read; and (3) Was your HSTCL related in any way to drug therapy that you received to treat either Crohn's Disease or Ulcerative Colitis?

Thank you for posting your very important information to this web site. I look forward to hearing from you.

God bless,

Ed Morawetz

GodhealedCTR
Posts: 12
Joined: Jan 2010

Hello Ed

As a mother, you have my deepest sympathy on the loss of your beloved son. In response to your questions (1) No, my hematologist said that "one swallow doesn't make a summer" so it was not enough for him to publish my miracle cure. (2) I will be seeing him again in a few weeks time and will ask him if he would consider publishing. In 1999 when I was diagnosed, there was only a few handful of HSTCL articles on the net and the prognosis was extremely bleak with no survivors. (3) As advised to Gretchen in earlier chat, my condition was not related to any drug therapy. When it presented itself in Jul 1999, within a short space of 2 weeks it reached Stage 4. All my organs, except for kidneys, shut down and the doctors gave me 48 hrs to live.

As indicated in my earlier postings, I had a few cycles of venesections because my ferritin levels are too high as a result of excessive blood transfusions in 1999/2000. My ferritin levels are still high at ~700 (norm count ~370) but that is much better than when I started a couple of years ago at >3,500.

I do wonder what happened with the person who started this chat Forum, Valkyri31mh. I hope that sharing my miracle cure will in some small way help someone out there. Is there no way for the patient, in the US, persuade the doctors to carry out the stem cell transplantation without having to go into remission? On both occasions of my transplant, I was not in remission at all. The doctors were able to harvest enough stem cells from me for two transplants and even selected only good cells from one batch.

When I see Dr Richard Herrmann again in a few weeks, I will try to get more information of my autologuous transplant regime from him to post onto this forum.

Meanwhile, stay positive and may the good Lord bless all of you.

CTR in Perth, Western Australia

erm
Posts: 16
Joined: Dec 2009

Hello CTR,

Thanks for your most recent post. I haven't been on this site for awhile, so am just seeing it now.

You and your doctor may know this already, but although HSTCL is still rare, its incidence is growing as a result of the use of biologic drugs (like Remicade) in combination with thiopurine immunesuppressants (like 6-mercaptopurine or Imuran) to treat Crohn's Disease (CD) and Ulcerative Colitis (UC) in America. It still has a very poor prognosis, and the US Food and Drug Administration (FDA) has now become concerned enough about the risks to require stricter warning labels on Remicade. Unfortunately, this is of litle use since patients recieve Remicade by infusion, never see the packaging and the warning, and are often unaware of the risks. FDA staff have also published several articles in the Journal of Pediatric Gastroenterology and Nutrition (JPGN) which strongly suggest an elevated risk of HSTCL among young men who receive these drugs to treat CD and UC. If it would encourage your doctor to publish your case study, I would be happy to send you references/internet links to these JPGN articles and to the FDA warnings.

God bless you, and thank you again for all of the information you have posted on this site. It may well be the first step towards saving more people's lives.

Ed

buddybear
Posts: 1
Joined: Apr 2010

I am somewhat encouraged by reading some of the posts here. My son died last year at age 19 from this disease after being on Imuran for 4 years for Crohn's. The medical community and health authorities seem to show little interest in these cases since they are so rare. By a bizarre co-incidence, another young man showed up at the hospital in the same ward as my son with the same condition at the same time after taking the same drug for 5 years. That's one for the statisticians! This person is doing ok after going through a transplant last fall. The two families obviously keep in touch. There are some legal issues going on as we were never informed that lymphoma was a possible side-effect and he was only having his blood checked every 6 months. Anyway, that being said, hopefully these drugs will be put under much more scrutiny and more care used in their prescribing.

Hessner
Posts: 2
Joined: Mar 2010

Ed and GodhealedCTR,

My heart breaks hearing about your son- I am SO, so sorry for your loss...

My husband was diagnosed with Crohn's Disease over 10 years ago. To help with Crohn's, he was on Remicade(6 years) and then switched to Humira(1 yr). Ryan was pretty healthy, but had a pretty stressful job. About a year ago he started having all these symptoms and they could not figure out what was wrong with him. After 4 months of mis-diagnosis and finally switching GI doctors, he was diagnosed with HSTCL in June of 09.
(Ryan's doctors have not necessarily said that either the Remicade or Humira were the underlying cause of his HSTCL)

He had 3 rounds of chemo over the summer and a bone marrow transplant in Sept of 09. He was in remission for 3 months and then two weeks ago we got DEVASTATING NEWS...it is back!

Today (3-15-10), he received a new chemo called Pralatrexate with the hopes of getting the cancer under enough "control" so they can then give him more of his brothers stem cells to then get him into a "remission."

My husband just celebrated his 30th b day in February...

Godhealed, does CTR stand for Choose the Right?
I would love any info you could send my way about your doctors treatment for you
teamryanhess@gmail.com

God Bless,
Margie H

You can find more info about Ryan and his treatment here:
www.teamryanhess.blogspot.com

erm
Posts: 16
Joined: Dec 2009

Dear Margie--thank you for your condolences. My heart breaks for you and Ryan as well, having to live with Crohn's Disease (CD), and now HSTCL.

Like Ryan's doctors, my son's doctors also had a very difficult time figuring out what was wrong with him in the fall of 2007. His pediatric gastroenterologist (Chris was 17 when his CD was diagnosed, and a week short of his 20th b'day when the HSTCL developed) even implied that Chris was just "high strung", and that his pain wasn't as bad as he described it. Within six weeks of that brilliant observation, the cancer was diagnosed, and five months later, my son was dead.

If your husband's GI docs aren't admitting the likely connection between Remicade and HSTCL, that's because they're in major denial about the dangers of biologic drugs like Remicade or Humira for CD patients, especially young males. The risks are worse when biologics are combined with a second immune-suppressant like 6-MP or Imuran, and even the FDA is now starting to admit that there is an elevated risk of HSTCL for CD patients receiving these drugs. FDA has issued statements about the likely connection between these treatments and HSTCL, and FDA staff have published several articles documenting the increasing number of HSTCL cases. I can send Ryan's doctors references or internet links to these statements and articles if you would like. If they haven't done so already, they should immediately report Ryan's illness to FDA's AERS/MedWatch reporting system. I know that doctors are reluctant to do this, but they have to report these life-threatening illnesses so that FDA understands the number of people whose lives have been affected by this devastating disease.

I am sorry to go on so long, especially when your only concern at the moment is that Ryan get well. I am just so anxious to have the full extent of the risks of these drugs documented, so that others might avoid what has happened to Chris and Ryan. I will pray for both of you, and I know that the one whose love is unending and unconditional is standing next to you and Ryan every minute of the day.

God bless,

Ed

iml
Posts: 5
Joined: Feb 2010

My daughter is 35, she was diagnosed with HSTCL in February, 2010. She had Crohns Disease and was on Remicade and Imuran for several years. The Remicade did seem to control the Crohns symptoms but she was never warned of the danger. She is being treated by Dr. Julie Vose at the University of Nebraska Med. Center. She is starting her third (of four) round of IVAC Chemo this week. Her brother is a match for a stem cell transplant which is scheduled for early May.

I am convinced that the Remicade and Imuran caused this life thretening disease. The lack of information is very frustrating. I have spent hours researching, trying to find a doctor or a hospital that has experience in successfully treating HSTCL. Has anyone been able to determine the percent of patients using Remicade that develop HSTCL? I agree with others who commented that a patient never sees the warning label when getting Remicade by infusion. When it was too late, I found the warning on the Remicade Web site...seems like doctors would know enough to at least warn a patient and give them a chance to make an educated lifesaving decision.

erm
Posts: 16
Joined: Dec 2009

Dear iml,

I am so sorry to learn of your daughter's illness. It seems like there are more and more stories like yours being posted on this site in the past 6-12 months. The people who have posted here are among the small group of people familiar with what it's like to experience the nightmare that you and your daughter are living through.

I am not sure how to find out about successful treatments for HSTCL, except for the people on this site, one of whom ("CTR" from Austrailia) has been in remission from HSTCL for a number of years. Other parents on this site have posted about new approaches that were untried (at least as far as I know) at the time that my son, Chris, was ill, which was less than two years ago. I would recommend that you try to get in touch with some of those people, through this site or through the email/phone info they have posted, to see what they can relate to you about the treatments their loved ones have received.

The percentage of young people who have developed HSTCL after receiving immunesuppressant drugs like Remicade and Imuran, to treat Crohn's or Colitis, is unknown, but is certainly growing. Some "experts" claim to be able to quantify the "odds", but this is a fiction since a number (perhaps even a large number) of the cases of HSTCL resulting from these treatments have gone unreported to the Food and Drug Administration (FDA). I know you have so much to cope with now, but if you can ask your daughter's doctors to inform FDA, via its Medwatch reporting system, about her illness (and keep pestering them to make sure they do it), it could be of great help to others.

FDA staff have published several articles about the incidence of HSTCL among young adults receiving immunesuppressants for Crohn's/Colitis, and as the number of cases has increased, FDA has gradually strengthened the warning labels for Remicade. However, as you and I know, this does little if any good for most people being treated with these drugs for Crohn's or Colitis.

I would be happy to send you the articles I have found on this subject, if you wish. In the meantime, I will keep you and your daughter in my thoughts and prayers.

With hope,

Ed Morawetz
ed.morawetz@verizon.net

iml
Posts: 5
Joined: Feb 2010

I just wanted to update our daughters progress in her journey fighting HSTCL. She began treatment at the University of Nebraska in February. Yesterday we learned that she is in remission and will start the stem cell transplant process June 8, 2010. Nedless to say, we are rejoicing that she succesfully completed the first stage of her treatment and is able to begin the next. I will keep you updated in the weeks ahead.

alcorn
Posts: 8
Joined: Sep 2009

it is wonderful to see some good news on this website - my very best to you from Belgium....

iml
Posts: 5
Joined: Feb 2010

My daughter is now on day 42 since the transplant. Her brother was a perfect match. Anyone living in the midwest looking for a resource for treatment of HSTCL might want to check in with the Nebraska Medical Center and Dr. Julie Voss. We are very pleased with treatment and its outcomes. Janna had some very distressing days with chemo side effects but now is doing very well. She is eating well and exercising to regain her strength. We know that the Spirit has been guiding her care and sustaining us all with miracles along the way. We take it one day at a time and rejoice with every small victory over this dreadful disease.

GodhealedCTR
Posts: 12
Joined: Jan 2010

Hello Margie and Angelli

Please see my response below...

Alghazal
Posts: 4
Joined: Nov 2014

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

Gretchen Harder
Posts: 13
Joined: Dec 2009

Hi, GodhealedCTR,

Thank you for your response. Sorry to be so slow in getting back to you. I thought I had the site set up to notify me when there was activity, but apparently not!

My son's oncologist is Dr. Andrei Shustov at Seattle Cancer Care Alliance/Fred Hutchinson Cancer Research Center in Seattle, Washington.

Once again we are disappointed because Rob was put on track for an allo transplant this month, but taken off the list because he isn't in remission, still too much lymphoma in his system. At the present time his white cells are all lymphoma blasts. He has been getting Romadepsin (aka Istodax) the last 3 weeks, but it appears that while the HSTCL takes a hit, it comes roaring right back. Same old story. We have managed to keep him infection free, but we have kept ourselves isolated during this ordeal to minimize the risk. I am interested in your story, because, like the others posting here, remission has been a requirement for transplant, and none of these cases can get there, the HSTCL is just so aggressive. Also, once you are on the transplant "team" there are 2 weeks of testing of your systems to be sure you are fit for transplant. Rob was actually demoted 1st because he still has an open wound that hasn't healed from his splenectomy back in July. In seeing what could be done to mitigate that, they discovered the lymphoma on the rise again. So, your case is so different in that you were not in remission and you were in very bad shape.

I would definitely encourage your doctor to publish your case. There are so few cases of this disease that I don't think there is enough research into it, maybe not enough incentive to research it. Maybe those of us posting can make a difference somehow - we've got the interest.

Angelli
Posts: 1
Joined: Mar 2010

Dear GodhealdedCTR, thank you so much for sharing your experience with us. I learned much from your story.My 29-year-old husband was diagnosed with HTCL on December 2009. His spleen was removed because of spotaneous rupture before we got the diagnosis. He has been on 3 courses of chemo. with the regime of CHOP, Hyper-CVAD and DHAP repectively. But the effect was not obvious, and his haematologist is not sure how to assess it. All we were told was that we must undergo xenogenous stem cell transplantation because his bone marrow was involved. However, some other haematologists recommend it's not necessary to undergo xenogenous stem cell transplantation because of the risk and the uncertainty of the disease. It is really hard for us to make our decision. Would you mind telling us more about the condition of your bone marrow at diagnosis and before ASCT? Was your bone marrow involved? And how to evaluate whether it is involved? Could you ask your haematologist whether we can communicate with him/her at his/her convenience? We really appreciate your experience and your help. My email address is lzl6119175@yahoo.com.cn. I am looking forward to hearing from your.
Best wishes to you!

Gretchen Harder
Posts: 13
Joined: Dec 2009

Dear Angelli,

My 24 year old son is battling HSTCL. He was diagnosed in July of last year, and has been put on numerous chemo treatments since that time to try to get the lymphoma into remission and then have a donor stem cell transplant (we call it allogeneic in the US; autologous is receiving your own cells). He has been put on the transplant team twice, but quickly demoted because the HSTCL roars back. My understanding is that stem cell transplant is the only potential way to cure HSTCL. You have to give the patient a new immune system that can fight off the lymphoma. The patient's own immune system is not recognizing the lymphoma as an invader. HSTCL hides out in the liver and spleen, and isn't so obvious in the bone marrow. When we were trying to find out what was wrong with our son, he had 2 bone marrow biopsies that were "unremarkable." They weren't seeing the lymphoma. It wasn't until Rob's spleen had been removed and biopsied, and a liver biopsy was done that clued the pathologist in to what to look for in the bone marrow biopsy. And it takes a special stain to detect this particular disease. Diagnosis is difficult, and the disease is very aggressive - hard to stop.

Rob is being treated in Seattle, Washington at the Seattle Cancer Care Alliance. His doctor is Dr. Andrei Shustov, who is a t cell expert. There are some other physicians mentioned in the above commentary.

GodhealedCTR
Posts: 12
Joined: Jan 2010

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

ncampbell722
Posts: 11
Joined: Sep 2009

Dear Godhealed,

You are such an inspriration to all of us who have a loved one who has gone through or going through this devastating disease. You give us hope and thank you for that. My mission now is to create awareness for others who are at risk of obtaining this disease by not be warned of the adverse side effects of the new immunosuppressants. My nephew passed away November 30, 2009 and it was a horrible experience for our entire family. You are an absolute miracle so God bless you.

I would love a copy of your BMT protocol in hopes of sharing with others to save a life.
My email is ncampbell722@att.net.

God bless,
Nancy

GodhealedCTR
Posts: 12
Joined: Jan 2010

Hello Nancy

I have emailed my Transplant Protocol to you. I went into a neurotoxic coma for about 10 days with the first protocol. Subsequently, my hematologist slowed down the second round and it (coma) didn't recur.

The US doctors may not be keen on the harsh toxic protocol I underwent but one has to fight fire with fire. In any case, in 1999, there were no known survivors of this disease and seeing that I was given no chance of survival, my feelings were that I have nothing to lose but everything to gain. The draconian treatment was definitely not a walk in the park and it was horrible for my loved ones to see me undergo all the awful side effects, pain and suffering from the chemo and transplantation.

The (global) prayers and overwhelming support from friends and family played a large part in my fight. It was important for me that during my darkest hours, my family had to have faith that God will heal me. In the worse case scenario that I did not survive, it was critical that my family hang on to that faith as I would have gone to Heaven to be with God - so win/win situation. Death comes to all of us but it's always hardest on the survivors.

So please count your blessings and live your lives without regrets.

God bless, Theresa
Perth, Western Australia

alcorn
Posts: 8
Joined: Sep 2009

Dear Theresa

I am absolutely in awe of you - I watched my husband die from this lymphoma last September and the only way I feel I can make any sense of my life now is to try and prevent the same from happening to anyone else.

I live in Belgium (originally from Ireland) and am doing everything I can here to raise awareness in my corner of the globe of the dangers of immunosuppressant medication. You are very kind to offer to email your protocol - I would GLADLY receive a copy to forward to the oncologist who treated my husband. He had only seen one previous case of this lymphoma in his entire career (he is a university professor, working at the Catholic University of Leuven, Belgium) and his previous patient did not survive either (he was being treated with immuno suppressant drugs following a kidney transplant).

My very very best wishes to you - I am trying so hard to believe that this is God's will and that my husband is in a better place, but while I am open to all religions and philosophies I have yet to decide what I really believe........

Thank you for helping and, as I know you are a firm believer, God bless you.....

Rosemary Holmes

GodhealedCTR
Posts: 12
Joined: Jan 2010

Hello Rosemary

What is your email address for me to send you the protocol?

Having faith in God's will, especially with an undesirable outcome is tough for mere mortals. After the miraculous healing of my 1999 HSTCL, I was very happy and "in love" with the world. However, it is so easy to slip back into the day-to-day grind and in 2006, I was diagnosed with another unrelated cancer of the stomach. The 2nd time around I was very angry and believe me, my faith was sorely shaken. So lightning does strike twice in the same spot! After some depressive thoughts, crying buckets and wallowing, I had to focus on finding the best treatment for the Adenocarcinoma. They said that statistically 1 in 3 people will get cancer so I thought that if I had to cop one in place of my loved ones, then I'll gladly accept the 2nd cancer. Fortunately, this time it was in its early stages. My surgeon wanted to do a total gastractomy as that was the surest way to totally eradicate the cancer. For a foodie and a female, this is a real horrible disaster especially with the post-op effects.

As you all know, the doctors don't always have the answers so I sought a second opinion and the 2nd surgeon suggested that a partial gastractomy could be possible. Without going into a lot of details of my 2nd journey with the dreaded cancer, I finally had a partial gastractomy and refused adjunct chemotherapy. The chemo was only going to reduce the risk by 5 to 10% - a very narrow margin - too much pain for very little gain. The one week after the surgery, waiting for the test results was a real torture. Once again, prayers and support from loved ones and friends pulled me through and God in his mercy, decided to keep me on earth for a little while more.

It's never good to ask questions that have no answer to, like why me? Just focus on the positives and live one day at a time.

Theresa

alcorn
Posts: 8
Joined: Sep 2009

Dear Theresa

Just as well one of us is thinking straight! Of course you can have my email address - rositaie@yahoo.co.uk and I will send a copy of your protocol to the university hospital where my husband was treated (and where they could not consider a stem cell transplant before the cancer was in remission - no such luck for a man with HSTCL). From what I can see there are only female survivors, and it is a pleasure to be in contact with one such survivor who is so willing to help. I am now even more in awe of your energy and faith, having learned of your second close call......

I know, rationally, there is no point asking why bad things happen to good people, but I feel we are naturally programmed to expect things to make sense.....maybe one day it will all be explained....

With thanks again, and my best wishes to you.....

Rosemary

Alghazal
Posts: 4
Joined: Nov 2014

Dear Godhealed CTR 

Thank you for your inspiration can you please let me know how to reach to your medical center and consultant ASAP

e-mail elghazallogien@gmail.com 

Thank you

Gretchen Harder
Posts: 13
Joined: Dec 2009

Hi, C.Theresa,

I would also like a copy of your transplant protocol. My email address is gharder@charter.net. My son, Rob, was told Monday that there is nothing more that can be done for him. The clinic has tried everything they could think of, including some combinations that hadnt been tried before, but nothing has been able to stop the lymphoma. He was told he has 2-15 weeks. Yesterday he began taking low dose naltrexone along with twice weekly IV Alpha Lipoic Acid through a naturopathic oncologist we have been seeing. It has shown some results in pancreatic cancer and also follicular lymphoma. It is also being looked at to treat autoimmune disorders. It's worth a try - and won't make Rob sick! Your protocol is worth looking at too, and I thank you for sharing with all of us.

Gretchen
Seattle WA

GodhealedCTR
Posts: 12
Joined: Jan 2010

Hello Gretchen

I have email my transplant protocol to you. The protocol, back-to-back 7 weeks apart, made me extremely sick, killing almost all living cells on my body - nails, hair, eyelashes - all falling off. It also "burnt" my upper epidermis (skin) and black flacks of skin was falling off all over the hospital white sheets. It was truly a very aggressive protocol, not to be taken likely. As I said earlier, my blood counts were not looking good at all when I started both transplantation, especially after the first.

Hopefully that would help somebody's medical treatment.

All the best to all,
Theresa

GodhealedCTR
Posts: 12
Joined: Jan 2010

Sorry I hit the Post Comment twice

aboykins
Posts: 1
Joined: May 2010

Hello Godhealed,

I am very interested in receiving your Transplantation Protocol. My mother was diagnosed with Stage IV HSTCL a month ago. She is 67 years old and has Sickle Cell Disease. I am not certain if she will be able to survive such aggressive treatment but would love to have more information. My email address is Auta_boykins@hotmail.com.

Thanks for sharing,
Auta

Gretchen Harder
Posts: 13
Joined: Dec 2009

Dear all,

Just wanted to let you know that Rob died last week, age 24, 9 months after diagnosis. He died peacefully, with his family at his side. His white count had gone quite high in the last several weeks, and it was primarily blasts. Liver failure was the probable cause of death.

I've been meaning to post the various treatments he had since diagnosis. In chronological order: 2 rounds Hyper CVAD B, 2 rounds Hyper CVAD A; 15 doses of Campath and 5 doses of Pralotrexate (given at same time); 3 doses of Clatarbine; 3 rounds of Eshap - 3rd round was stacked (given early); 5 doses of Romidepsin and 3 doses of Velcade (given at same time). All had the effect of knocking the lymphoma down, but not out. The Romidepsin/Velcade combo really knocked him for a loop and when it was apparent they weren't working, he opted to stop treatment. Why feel so sick for no benefit. He did go to transplant service twice, and did have a donor match, but the lymphoma reared its ugly head before he could get to conditioning.

We are packing up to go back home, planning a memorial service for Rob. We want to stay connected with you all to help find answers to this disease. We will be in touch.

Gretchen

GodhealedCTR
Posts: 12
Joined: Jan 2010

Hello Gretchen

My deepest condolences to you and your family on the passing of Rob.

I've not been to this site for a while because about a month ago, I was told my stomach cancer is back. This week I had my PET Scan (for metastasis) and Endoscopic Ultra Sound (for Staging) and it seems that the Signet Ring Adenocarcino is possible Stage 2/3 penetrating the 2nd layer of the stomach and evident in the 4th. I'll be seeing my surgeon early next week to discuss the treatment plan but chemo and a radical total gastrectomy (removal of whole stomach) is unavoidable this second time round.

I'm in a better head space now but was pretty depressed and in a dark place for a couple of weeks. Whether the cancer has metastasized to other organs, lymph nodes or glands is still inconclusive. To top it off, there is bilateral blockage in my kidneys and urethra which they think could be due to the scarring from the chemo of first cancer in 1999. Now I need an oncologist, urologist and Upper GI surgeon.

To be honest, I am not afraid of dying because I will be painfree in Heaven with the Lord. It will, however, be extremely sorrowful for my surviving loved ones whom I leave behind. I am preparing for the worse and praying for the best outcome.

God bless all of you and give you comfort in your time of sorrow.

Theresa

Coriolis
Posts: 5
Joined: Jun 2010

Dear Theresa,

I've been following this forum and especially your story for the past 4 months. In March this year, my husband was diagnosed with Hepatosplenic T Cell Lymphoma AND Haemophagocytosis Syndrome. He passed away 3 weeks ago - just 9 weeks from the initial diagnosis. The cancer had spread to his brain in the last two/three weeks before he died. The ferocity and aggressiveness of this disease is truly shocking.

We are people of faith too; all our family and friends and not less than 5 different churches rallied and prayed together for God to intervene and bring him healing. But God has other plans obviously.

It's a very difficult time for all of us. Those that are left behind struggles with our pain, loss and sorrow. The "why?" never ends and often, we don't get the answers until we get to the other side.

I will keep you in my prayers. Just because some of us lost the battle to cancer, doesn't mean miracles don't happen. Always trust, always hope, always persevere. (I Cor 13:7)

Ann, Sydney NSW

GodhealedCTR
Posts: 12
Joined: Jan 2010

Hello Ann

Your response is most timely indeed as unlike in 1999 when I was very focused, positive and optimistic, this third experience I am lapsing into a negative space with some pessimism. Then in between I get a morale boost from family and friends.

I shall look up the bible verse you've written.

I'm truly sorry for your loss. My 9 weeks of chemo started today and all seem to have gone rather smoothly. One chemo (5FU) is being infused via battery operated pump 24/7 over the 9 week period.

Your prayers are greatly appreciated.

Theresa, Perth WA

Gretchen Harder
Posts: 13
Joined: Dec 2009

Dear Theresa,

Just want you to know that you are in my thoughts. You've got people around the world cheering you on!!

With love,
Gretchen

Coriolis
Posts: 5
Joined: Jun 2010

Hi Theresa,

Thank you for your heartfelt sympathy.

I'm so glad to hear from you. Many times I've been wanting to post a comment in this discussion board but I was in the hospital with my husband every single day for weeks. Those tests, scans, biopsies, line care, injections and chemo - they didn't leave much time for anything else.

My heart broke into pieces when you told us the stomach cancer is back. You have inspired so many people in this forum with your testimony. You have given us a ray of hope through your story. I will continue to bring you in my prayers.

Sincerely,
Ann

Gretchen Harder
Posts: 13
Joined: Dec 2009

Dear Ann,
I'm glad you have signed on to this discussion group and hope you will stay connected with us. My condolences on the loss of your husband. My son died 4 weeks ago of HSTCL. When Rob was diagnosed last July we were told that this disease is so rare, there are only 10 to 20 cases in the world per year. There has been so much activity on this discussion group in the last 6 months, and I am counting 6 or 7 deaths in that time just among those of us that found this group, which makes me believe that HSTCL is not as rare as we were told. It may be too soon for either of us to do anything, but I hope you will stay in touch. There are family members here who understand what you have gone through, have been supportive, and want to add to the body of knowledge about this disease. Feel free to email me: gharder@charter.net. Or use the mail function on this site.

My best wishes to you,

Gretchen

Coriolis
Posts: 5
Joined: Jun 2010

Hi Gretchen,

Thank you for your heartfelt sympathy too. My deepest condolences to you & your family on the loss of your son. I will definitely stay in touch. This forum is a great place to share our experience and to give support to each other.

An article in Oxford Journals - Annals of Oncology says about HSTCL: "A better understanding of the pathophysiology of HSTCL and new therapeutic strategies are needed."

Can't argue with that.

Ann

worriedandangry
Posts: 1
Joined: Jul 2011

I'm sorry to hear about your son, Rob. So sorry to Ann for the loss of her husband. HSTCL sounds horrible and I can't possibly imagine what you have all had to go through. I agree that it sounds like HSTCL isn't as rare as we think. Thankfully, my daughter does not have this horrible disease. She is 10, she was diagnosed with Crohn's when she was 7. We have been through many painful treatments and as of now, we are at the last combination that is available to children and not in trials. She takes Humira and 6mp, along with the rest of the list of daily meds.

Is this a deadly combination for someone her age? I feel guilty and horrible every time I inject her and put 6mp in her mouth. Her Ped GI tells me that she is in remission (for Crohn's) and I should be happy and continue the treatment, but I can't help read the warnings, articles and all of these terrible stories that are posted on this site. I'm conflicted and her doctor is CONVINCED this treatment is the best. I am in a constant state of unrest and I would have her blood tested daily if they would let me. Granted I am happy that she is syptom free, but I still worry. I know that she is not in the HIGHEST risk group b/c she is female, but jeez, she is only 10. How would I live with myself if I KNEW of the risk and followed the doctor's instructions to continue? We have an appt coming up and I am going to attempt this conversation AGAIN. Does anyone have any insight? How much do I really know about the risks? How pushy is too pushy with the doctor?

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Hi,

When you are talking about a member of your family and health care; you have a free pass to be as pushy as you think you need to be. After all she's your baby! You are obligated to make the best possible decisions for her, based on all the information that you have. Keep on researching and keep on asking the doctors what ever it is that you need answered. You may need to make an appointment to speak with the doctor without your daughter being there. An appointment for an office discussion should offer you the opportunity to speak openly with this doctor. Share information with the doctor, she won't know how you feel or what your concerns are unless you tell her. You can also ask for a second opinion or even find a doctor that you'll have a better rapport with.

Good luck with this situation. I pray it gets easier for you and your daughter.

Kellie

myonlychild
Posts: 2
Joined: Sep 2011

a

catscanmom
Posts: 5
Joined: Nov 2011

I FEEL THE SAME WAY YOU DO.MY DAUGHTER IS CURRENTLY ON TPN BY PIC-LINE AND WE ARE CHOOSING NOT TO USE THE 6MP OR REMICADE THAT HAS BEEN RECOMENDED.SCARED ABOUT THE CANCER RISKS.
WE ARE SET TO GET A SECOND OPINION SOON AND FIND OUT WHAT OUR OPTIONS ARE.SHE IS CURRNTLY ON PREDNISONE AND ONLY LIQUIDS WHICH ARE LIMITED BECAUSE SHE STARTED HAVING PAIN AGAIN AFTER THE STEROIDS WERE REDUCED.SEEKING OUT HOMEOPATHIC WAYS AS WELL.
I AM BEING VERY PUSHY RIGHT NOW WITH OUR DR AND INSISTING THAT HE TRY TO GIVE HER BOWEL REST A LITTLE LONGER TILL THE 2ND OPINION IS DONE,.THE DR FEELS WE ARE WASTING TOO MUCH TIME TO START TREATMENT,BUT I CANT BRING OURSELVES TO PUTTING HER ON THESE STRONG DRUGS.

I FEEL THAT THERE ARE MORE COMPLICATIONS AND DEATHS FROM THE T-CELLLYMPHOMA THAN THE FDA KNOWS ABOUT.AFTERALL,THE 6MP IS NOT EVEN FDA APPROVED FOR USAGE FOR CHROHN,S.ONLY TO TREAT LEUKEMIA.THATS SCARY JUST IN ITSELF
GOODLUCK WITH YOUR DAUGHTER

Nickymom
Posts: 1
Joined: Dec 2011

Hello. My son Nick was diagnosed when he was 18 with ulcerative colitis. After much research and first following doctors orders and taking 6MP - we researched other options. He had an allergic reaction to the drug and was only on it for a few weeks. Seeing Ed Morawetz's brave posts and the horrid loss of his son, Christopher - we really appreciated his research and insight. Our doctor pushed us towards Remicade and others. We went for a second opinion to Mt. Sinai in NYC and Dr. James George.

We pushed and he agreed to think out of the box - we were so afraid to have our son use the strong drugs cited here and his chance to develop T-cell Lymphoma. He was about to turn 19 which it also appeared based upon the posts on this site - was an optimum age that when exposed to these drugs - his incidence would be much higher to develop Lymphoma. Nick was placed on Sulfasalazine - an old fashion drug that is not normally used - very little side effects - Nicky was placed on 1/4 dose for a week and slowly built up a tolerance due to his allergic reaction to 6MP and he has been in remission for almost 1 year with his colitis. He is thriving in college up in Boston and pray and thank God every day that this drug is working and we do not have to make difficult decisions. I pray for all of you whom have posted here - you have saved lives and I wish you some type of peace if you have lost a beloved. My best - Nicky's Mom

erm
Posts: 16
Joined: Dec 2009

Dear Ann,

Please accept my deepest sympathies on your husband's passing. My heart breaks for anyone who has had to watch a loved one's life taken away by the horrifying and rapid effects of HSTCL.

Like you, I am a person of faith, and I know that God's ways are not our ways; I also believe deeply that we who survive are called to take up the battle against HSTCL. As Gretchen commented, the number of deaths reported here in recent months suggests that HSTCL is not nearly as rare as the medical community believes. And, as you commented, more research about the causes, and much more research on effective treatment, is clearly needed. My hope is that the people from this group, who have seen first-hand the effects of this disease, can take the lead in advocating for more research about HSTCL.

May God bless you and keep you in this time of grief and sorrow.

Ed Morawetz (father of Chris--d. 5/2/08, age 20, of HSTCL caused by immunesuppressant treatment for Crohn's Disease)

ed.morawetz@verizon.net

erm
Posts: 16
Joined: Dec 2009

Dear Theresa,

Although I haven't been on this site for the past month, I wanted you to know that I have been thinking about you, and praying for your recovery from this latest round of cancer. You have obviously received splendid care from your doctors over the past 11 years, and I'm confident that your strength and their skill will pull you through again.

I remember, after my son Chris died of HSTCL, how I kept asking "why". It's difficult not to ask the same question about having a serious cancer for the third time in 11 years. But, as other posts have said, we can't possibly answer that question with our limited, earthly perspective. We can only fall more deeply into the arms of the One who always cares for us and loves us, through all of our joys and sorrows.

Thinking of you, and hoping for the best. God bless,

Ed

erm
Posts: 16
Joined: Dec 2009

It has been awhile since I posted, but I wanted to share with everyone who comes to this site the latest FDA data on HSTCL and its relationship to immune-suppressive treatment of Crohn's Disease (CD) or Ulcerative Colitis (UC). I have been contacted by several families who viewed this site when it was first suggested that their children/spouses take immune suppressants such as Remicade, Humira, Imuran, 6-MP, or various combinations of these drugs, to treat CD/UC. I especially hope to reach those people with this message.

According to the latest FDA report, dated 8/26/10, there are now 41 known cases of HSTCL among those receiving immune-suppression to treat CD/UC, up from only 8 cases in 2007. This coincides with the increase in use of/duration of immune-suppression to treat CD/UC. Of the 38 cases in which the patient's gender was known, 34 occurred in men, mostly between the ages of 15 and 35. PLEASE: IF YOU HAVE CD/UC, AND IT HAS BEEN RECOMMENDED THAT YOU BEGIN TREATMENT WITH AN IMMUNE-SUPPRESSIVE DRUG, ASK YOUR DOCTOR IF HE/SHE IS AWARE OF THE MANY DEATHS RESULTING FROM THIS TREATMENT, AND WHETHER, IN THEIR OPINION, SURGICAL OR OTHER TREATMENTS MIGHT BE SAFER.

My best to all of you--including family members--who suffer from CD, UC, or HSTCL.

erm
Ed Morawetz (Father of Chris, died of HSTCL on May 2, 2008, at the age of 20)
ed.morawetz@verizon.net

PS to those on this site with family members who have been diagnosed with HSTCL: Please know that I and other members of this group are exploring every possible means of increasing public awareness of HSTCL resulting from immune-suppressant treatment of CD/UC. I am also "badgering" FDA to publicly release the above numbers, which at present can only be obtained through the Freedom of Information Act or a member of Congress.

catscanmom
Posts: 5
Joined: Nov 2011

OH MY GOD! THANKYOU FOR THAT INFORMATION,.WE ARE STILL THINKING ABOUT WHETHER TO PUT OUR DAUGHTER ON THESE MEDS LIKE 6PM ,BUT THIS HAS REALLY BEEN AN EYE OPENER

catscanmom
Posts: 5
Joined: Nov 2011

DEAR ED,
I just recently became a member of this website on behave of my daughter.The dr.s are
peressuring us to put our daughter on 6mp or remicade.I have done exstensive research and were holding off till second opinion next week.
How did you get those numbers about the t-cell lymphma?Your courage to help others to honor your son is remarkable.Please continue to get the FDA to be accountable and help.

regards,
kathy

erm
Posts: 16
Joined: Dec 2009

Dear Kathy,

I'm so sorry to be so late getting back to you. Until today, I haven't been on the CSN site for over 6 months, and haven't yet figured out how to get notified via email when there's a new post.

The short answer to your question is that the numbers I've posted on this site have been compiled by the Food and Drug Administration (FDA), which is the Federal agency responsible for approving all prescription drugs, and for monitoring the safety of drugs after their approval. Since my death from HSTCL in May of 2008, I have been badgering FDA to develop a better way of capturing information about HSTCL and its link to immune-suppressive treatment of Crohn's and Colitis. This April, for the first time, FDA made these numbers available to the public on the internet at FDA.gov/Drugs (I had previously received the data via congressional staff). You can get the latest figures (through 12/31/10) by going to that website and typing in the search term "hstcl".

Please contact me directly by email (ed.morawetz@verizon.net) or phone (703-346-7183, or 703-354-6471), and I can give you more information. In the meantime, I'll keep you, your daughter, and your family in my prayers.

Regards, Ed

catscanmom
Posts: 5
Joined: Nov 2011

DEAR ED,
I just recently became a member of this website on behave of my daughter.The dr.s are
peressuring us to put our daughter on 6mp or remicade.I have done exstensive research and were holding off till second opinion next week.
How did you get those numbers about the t-cell lymphma?Your courage to help others to honor your son is remarkable.Please continue to get the FDA to be accountable and help.

regards,
kathy

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