Hepatosplenic T-cell Lymphoma

iml

Hessner said:

Crohn's disease and now HSTCL
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

Hepatosplenic T-Cell Lymphoma
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

iml said:

Hepatosplenic T-Cell Lymphoma
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.

Hepatosplenic T-cell Lymphoma
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

alcorn

erm said:

Dr Jaffe
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?)

Hi from Belgium, Europe
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....

Angelli

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.

Dear GodhealdedCTR, thank
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

Angelli said:

Dear GodhealdedCTR, thank
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!

Bone Marrow Involvement
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.

erm

alcorn said:

Hi from Belgium, Europe
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....

Hi from Belgium, Europe
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

erm said:

Hi from Belgium, Europe
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 from Belgium
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

Hessner said:

Crohn's disease and now HSTCL
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

Autologous Stem Cell Transplant Protocol
Hello Margie and Angelli

Please see my response below...

GodhealedCTR

Gretchen Harder said:

Bone Marrow Involvement
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.

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

ncampbell722

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

Dear Godhealed,
You are such
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

buddybear

erm said:

HSTCL treatment
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

HSTCL outcomes
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.

GodhealedCTR

ncampbell722 said:

Dear Godhealed,
You are such
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

Transplant Protocol
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

GodhealedCTR said:

Transplant Protocol
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

transplant protocol
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

alcorn said:

transplant protocol
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

transplant protocol
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

Gretchen Harder

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

Transplant Protocol
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

Gretchen Harder said:

Transplant Protocol
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

Transplant Protocol
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

Gretchen Harder said:

Transplant Protocol
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

Sorry I hit the Post Comment
Sorry I hit the Post Comment twice

alcorn

GodhealedCTR said:

transplant protocol
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

my email address
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

aboykins

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

Transplantation Protocol Needed
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

aboykins said:

Transplantation Protocol Needed
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

Another Man Down
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