Hepatosplenic T-cell Lymphoma

Gretchen Harder said:

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

Another Man Down
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

iml said:

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.

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

GodhealedCTR said:

Another Man Down
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

Praying for the best
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

Coriolis said:

Praying for the best
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

Keep in Touch
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

Gretchen Harder said:

Keep in Touch
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

Hi Gretchen
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

Coriolis said:

Praying for the best
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

Praying for the Best
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

GodhealedCTR said:

Another Man Down
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

Praying for you
Hi Teresa

You are definitely in my prayers. By the time I received your protocol, it was already too late. Ashley died March 19th. I visited the blog today because I was hoping to hear a success story. I am in soo much pain since the death of my baby. She was perfectly healthy. Most of the bloggers mention Remicade and certain immunosuppresant drugs, but Ashley was not on any of these drugs. Her only medical issue was that she was asthmatic. Her doctors said that she didn't have any underlying problems that would have caused this. They were baffled because she didn't even have evidence of swollen lymph nodes. It wasn't until they did the PET scan that they found the evidence of the cancer.

She graduated a year early in was in her first year of college when she became ill.
Her initial sypmtoms were fever,stomach ache,and nausea. This was around the same time that we had the outbreak of H1N1. When the nurse from her college called, she said that some of the kids were experiencing flu-like symptoms and that I could either come and get her, or they could isolate her in another dorm like thhe others that were having the same symptoms. I chose to go and get her. To make a long story short, After 4 emergency room visits in one week and being misdiagnosed with mononucleosis, Ashley was hospitalized. She underwent lots of testing and was diagnosed with HSTCL by Dr. Jaffe.

After the diagnosis (October 13,2009), she underwent her first round of chemo. She was already in stage 3. She was released from the hospital 2 weeks later. We traveled to Duke University to meet with the transplant doctor. None of our family members were a match, but the doctor had found a cord blood donor that he felt could work. We were told to come home, do one round of chemotherapy and return to Duke for transplant. We checked into the hospital on November 16, 2009 and never left. Ashley was on her 7th round of chemo when she died. She went into ICU on March 15th. She was supposed to be transported to MD. Anderson (Texas) by private medical aircraft on March 16th, but she died on March 19th.

I have dedicated my life to trying to do all that I can to find a cure to this UGLY, AGGRESSIVE MONSTER!

Teresa please update when you get a chance.

My prayers and condolences goes out to all of the members of this blog. May God Bless Us All!

Coriolis said:

Light The Night
Dear Hope712,

Please accept my deepest condolences to you & your family on the loss of your daughter. I checked this forum regularly to see if there's a glimmer of hope in relation to a better treatment for HSTCL, but more heartbreaks are what I found so far.

Like your daughter, my husband has always been a very fit and healthy 30 year old. The only indication of something wrong was ongoing fevers and elevated LFT results. I am still reeling from our massive loss and pain.

I am now taking part in an event called Light The Night, a fund-raising walk organised by The Leukaemia Foundation who provides support & services for blood cancer patients all over Australia. They have invested close to $16 millions in research for better treatments & cures for blood cancers. My walk is next Friday, 3 September 2010, in Parramatta Riverside, Sydney. I'll be lighting a gold balloon with a tiny light inside in memory of my beloved husband.

I would encourage anyone from Australia to support this very worthy cause. Please check their website at www.lightthenight.org.au and find out if there's a local event near you or to make an online donation.

We live in a world where individuals can change the course of history (think Thomas Edison, Martin Luther King, or Steve Jobs), so imagine what a group of determined, like-minded people can do. Together, we CAN make a difference.

Ann


P.S. Theresa: I've been praying for you & I'd love to hear how you are doing.

Hi Coriolis
I joined Light
Hi Coriolis

I joined Light The Night two days after I buried Ashley. My team is "Ashley's Angels". I have over 40 members and we will be walking on October 16, 2010. Our walk will start at Freedom Plaza in Washington, DC. I too, feel that this is a worthy cause and plan to continue to support it. Good luck and God Bless!

hope-712 said:

Hi Coriolis
I joined Light
Hi Coriolis

I joined Light The Night two days after I buried Ashley. My team is "Ashley's Angels". I have over 40 members and we will be walking on October 16, 2010. Our walk will start at Freedom Plaza in Washington, DC. I too, feel that this is a worthy cause and plan to continue to support it. Good luck and God Bless!

Coriolis & Hope-712
Hi,

Just wanted both of you to know that I check in regularly, too. It has been pretty quiet for the last couple of months. I was glad to hear more of hope-712's story. I had wanted to respond to you back in the spring, but was too wigged out about Rob's situation. We are all starting to hit those anniversary dates. Holding you all in my heart as we navigate through this rough road. Rob's doctor mentioned back in April that he is part of a consortium of t cell specialists that is putting together a web based data base of cases. If I learn more about it, I will pass on info here. Anything to increase awareness. Especially if it helps them see that there are more cases than they were aware of. Ann, if you haven't already, check out Margie Hess's blog: www.teamryanhess.blogspot.com. Ryan was 30 also, so maybe there is a connection for you.

hope-712 said:

Praying for you
Hi Teresa

You are definitely in my prayers. By the time I received your protocol, it was already too late. Ashley died March 19th. I visited the blog today because I was hoping to hear a success story. I am in soo much pain since the death of my baby. She was perfectly healthy. Most of the bloggers mention Remicade and certain immunosuppresant drugs, but Ashley was not on any of these drugs. Her only medical issue was that she was asthmatic. Her doctors said that she didn't have any underlying problems that would have caused this. They were baffled because she didn't even have evidence of swollen lymph nodes. It wasn't until they did the PET scan that they found the evidence of the cancer.

She graduated a year early in was in her first year of college when she became ill.
Her initial sypmtoms were fever,stomach ache,and nausea. This was around the same time that we had the outbreak of H1N1. When the nurse from her college called, she said that some of the kids were experiencing flu-like symptoms and that I could either come and get her, or they could isolate her in another dorm like thhe others that were having the same symptoms. I chose to go and get her. To make a long story short, After 4 emergency room visits in one week and being misdiagnosed with mononucleosis, Ashley was hospitalized. She underwent lots of testing and was diagnosed with HSTCL by Dr. Jaffe.

After the diagnosis (October 13,2009), she underwent her first round of chemo. She was already in stage 3. She was released from the hospital 2 weeks later. We traveled to Duke University to meet with the transplant doctor. None of our family members were a match, but the doctor had found a cord blood donor that he felt could work. We were told to come home, do one round of chemotherapy and return to Duke for transplant. We checked into the hospital on November 16, 2009 and never left. Ashley was on her 7th round of chemo when she died. She went into ICU on March 15th. She was supposed to be transported to MD. Anderson (Texas) by private medical aircraft on March 16th, but she died on March 19th.

I have dedicated my life to trying to do all that I can to find a cure to this UGLY, AGGRESSIVE MONSTER!

Teresa please update when you get a chance.

My prayers and condolences goes out to all of the members of this blog. May God Bless Us All!

My niece
My condolences go out to you and your family hope. My niece has taken a similar course as the one you described with your daughter. She is 21 years old and had to same symptoms as your daughter (fatigue, nausea and fever). The doctors felt she had nothign more than mono and ran numerous tests that yielded negative results. After 1.5 wks in the hospital in Georgetown, SC they transferred her to a cancer center in Charleston, SC, where she has been since Sunday (10/17/2010). They've had to give her a platele transfusion because her count was so low and they've given her steriods to help her become stronger for the chemo treatment she is going to undergo. It's really scary because I have not read many success stories posted on this thread and my niece appears to be taking the same course your daughter took. It's so difficult seeing a young person that was so full of energy the last time you say them going through so a difficult time. My niece has a 2yr old daughter that makes this even mroe difficult to cope with. If you know of any information or advances made in treating this awful disease, I'd love to have that information before it is too late for my niece. The doctors are telling my family what is wrong, but I do not think they are being honest about the harsh reality and low survival rate that accompany this disease. :-(