Hepatosplenic T Cell Lymphoma (HSTCL)

MChantal

girliefighter said:

Thinking of you both

Just finished my first round of chemo today and wanted you to know that I am thinking of you both and hoping for miracles to happen and blessings to arrive. I cannot imagine the pain that you are both in both emotionally and physically, bear in mind that the HUMAN SPIRIT can do miraculous things when it needs to.

You are where you need to be right now, getting the treatment that your husband needs<---- keep that in your mind, everything happens for a reason, there is a reason you were sent to one of the best hospitals in the United States.

Do yourself a favor and don't research online, most if it is old and they have had so many advancements in cancer research and treatments. My cancer is uncureable and I am a 36 year old single mother, looking stuff up destroyed my spirit for a little bit. Get your strength and hope from this group, they are the most supportive inspirational group of individuals I have ever met.

Prayers and Healing strength will be sent your way

Carie

 

You are an inspiration Carie.

You are an inspiration Carie. I appreciate the prayers you have offered and given. I can feel them working. I am hopeful and have faith.

You are as well, in my heart full of prayers.

MChantal

illead said:

Hang in there

I can't imagine your anxiety today.  Michelle you are a wonderful support for your fiance, you are doing all you possibly can and he knows it and that is all he needs from you.  You'll get through this but it will be rough.  I know, I'm a caregiver also.  Our prayers continue with you but know today is one of the days you may need a little extra.  Please let us know how the appt went.  Thoughts and Prayers,  Becky

Hello Becky

Hello Becky, I apologize for the late response.

The appt. gave a glimpse of hope as Dr. Nowakowski our Dr. here at the Mayo Clinic is absolutely wonderful.  They are doing more tests because they just cannot confirm that it is absolutely Hepatosplenic T Cell Lymphoma. Which is perfectly fine with me! My hopes are there with the grace of God's spirit. I have faith.

The prayers are working Becky, I can feel it.

Please keep them coming.  We have an MRI and another bone marrow biopsy tomorrow. Following, with a meeting with infectious disease and Dr. Nowakowski on Tuesday hopefully for an answer. The Dr. said what Kyle has looks like a form of Lymphoma or maybe a disease called HLH (not any better). In which, I am praying for some form of Lymphoma that is treatable.

 

MChantal

illead said:

Hang in there

I can't imagine your anxiety today.  Michelle you are a wonderful support for your fiance, you are doing all you possibly can and he knows it and that is all he needs from you.  You'll get through this but it will be rough.  I know, I'm a caregiver also.  Our prayers continue with you but know today is one of the days you may need a little extra.  Please let us know how the appt went.  Thoughts and Prayers,  Becky

Hello Becky

Hello Becky, I apologize for the late response.

The appt. gave a glimpse of hope as Dr. Nowakowski our Dr. here at the Mayo Clinic is absolutely wonderful.  They are doing more tests because they just cannot confirm that it is absolutely Hepatosplenic T Cell Lymphoma. Which is perfectly fine with me! My hopes are there with the grace of God's spirit. I have faith.

The prayers are working Becky, I can feel it.

Please keep them coming.  We have an MRI and another bone marrow biopsy tomorrow. Following, with a meeting with infectious disease and Dr. Nowakowski on Tuesday hopefully for an answer. The Dr. said what Kyle has looks like a form of Lymphoma or maybe a disease called HLH (not any better). In which, I am praying for some form of Lymphoma that is treatable.

 

DadysGirl

MChantal said:

Appointment

I apologize for the late response as it just seems to have been somewhat of a blurr. The appt. was on Thursday as we met with Dr. Nowakowski who is absolutely wonderful.  Here comes the confusing yet, extremely hopeful part. As Dr. Nowakowski was first reviewed over all of Kyle's records (blood work, PET scan, bone marrow biopsy and skin biopsy) and did a physical exam he was somewhat confused and stunned. He was stunned to find that the welts that were so severe within the first 3 weeks of kyle's outbreak (in February) had now disappeared without any treatment. While sitting with him the pathologist also called and they both conflicted over the fact that his symptoms did not correctly correlate with the hepatosplenic t cell lymphoma. Extremely hopeful! He has apparent symptoms however, its not exactly what they had suspected, I guess?

We are still here in Rochester, MN. We are scheduled for an MRI and another bone marrow biopsy tomorrow. Following by, a meeting with infectious disease and Dr. Nowakowski on Tuesday. Planning on leaving Wednesday, if we can potentially get an answer and jump on the road with his treatment plan.

I am still praying. And, I think the prayers that everyone is doing is helping! I can feel it.

They also mentioned it might be a blood disease, HLH. Which is not any better. I am hoping that is just some "type" of lymphoma that is treatable! Which he did mention was a possibility.

 

I'm glad the outbreak is

I'm glad the outbreak is getting better. I truly hope it will turn out to be something benign and it not I hope it will be something treatable and curable... Please let us know how things go and wishing you both comfort and ease with bone marrow biopsy tomorrow... Lots of luv...

illead

MChantal said:

You are an inspiration Carie.

You are an inspiration Carie. I appreciate the prayers you have offered and given. I can feel them working. I am hopeful and have faith.

You are as well, in my heart full of prayers.

Encouraging news

Hi Michelle,

     I was so encouraged to hear your news.  Let's hope that it is a different lymphoma.  Many lymphomas have the same symptoms that Kyle had.  With Bill's Mantle Cell, he had night sweats, high fevers and rigors (extreme chills) he also had hives.  A lot of docs discount hives as a symptom but he had never had allergies or hayfever etc before and we live in the Sacramento Valley (very agricultural).  About a year or so before his dx he would break out with bumps on his lips that made him look like Homer Simpson, then the hives.  They would get so bad he looked like an alligator, (he was quite a sight BTW).  He would take ceterizine and they would go away.  So I am just wondering if that is what Kyle had on his back.  At any rate, it is good they are doing another biopsy.  No matter what though, there is always something new on the horizon especially with lymphoma.  When we first checked the internet for Mantle Cell, it too was practically a death sentence and his oncologist told us today that it is not near as ominous as it once was and it is possible to keep it in remission.  So keep the positive thoughts in the forefront, we are.  We're all in the same fight!Please let us know when you find out, we all care. Becky

MChantal

illead said:

Encouraging news

Hi Michelle,

     I was so encouraged to hear your news.  Let's hope that it is a different lymphoma.  Many lymphomas have the same symptoms that Kyle had.  With Bill's Mantle Cell, he had night sweats, high fevers and rigors (extreme chills) he also had hives.  A lot of docs discount hives as a symptom but he had never had allergies or hayfever etc before and we live in the Sacramento Valley (very agricultural).  About a year or so before his dx he would break out with bumps on his lips that made him look like Homer Simpson, then the hives.  They would get so bad he looked like an alligator, (he was quite a sight BTW).  He would take ceterizine and they would go away.  So I am just wondering if that is what Kyle had on his back.  At any rate, it is good they are doing another biopsy.  No matter what though, there is always something new on the horizon especially with lymphoma.  When we first checked the internet for Mantle Cell, it too was practically a death sentence and his oncologist told us today that it is not near as ominous as it once was and it is possible to keep it in remission.  So keep the positive thoughts in the forefront, we are.  We're all in the same fight!Please let us know when you find out, we all care. Becky

UPDATE

Today was our second appt. with Dr. Nowakowski in which, he confirmed it is NOT Hepatosplenic gamma delta t cell lymphoma!  Thank you Lord!

However, now they investigating what his case actually is...? We have meet with infectious disease this morning as well and they have took blood for cultures to rule out any environmental factors.  I think I also failed to mention that Kyle is a Corrections Officer at the County Jail in Albuquerque, NM. Which is why, they are consulting with infectious disease as well.

They know for a fact, it is the bone marrow that is "infected" to say, by depicting "atypical, small, and unable to hold iron RBC's." 

So now we are back to the guessing game. I am grateful and blessed that it is NOT that horrendous lymphoma to say the least. However, Kyle has now become frustrated with not knowning. Which is understandable. I am merely thankful that these doctors are sincerely concerned for him.

Well continue to keep you all updated. Thank you all, from the bottom of my heart. Truly.

 

illead

MChantal said:

UPDATE

Today was our second appt. with Dr. Nowakowski in which, he confirmed it is NOT Hepatosplenic gamma delta t cell lymphoma!  Thank you Lord!

However, now they investigating what his case actually is...? We have meet with infectious disease this morning as well and they have took blood for cultures to rule out any environmental factors.  I think I also failed to mention that Kyle is a Corrections Officer at the County Jail in Albuquerque, NM. Which is why, they are consulting with infectious disease as well.

They know for a fact, it is the bone marrow that is "infected" to say, by depicting "atypical, small, and unable to hold iron RBC's." 

So now we are back to the guessing game. I am grateful and blessed that it is NOT that horrendous lymphoma to say the least. However, Kyle has now become frustrated with not knowning. Which is understandable. I am merely thankful that these doctors are sincerely concerned for him.

Well continue to keep you all updated. Thank you all, from the bottom of my heart. Truly.

 

I think we all agree that we

I think we all agree that we are so relieved it is not the big one.  Whatever happens now cannot be worse it doesn't seem.  Please tell Kyle to keep  positive thoughts going in his brain.  It sounds like you have very caring and knowledgeable doctors and we know they will get to the bottom of this.  Please know we are all thinking of you and hoping for the best.  Thank you for keeping us informed and we look forward to the latest news.  Thinking and praying for you both and for your families.  Bill & Becky

anliperez915

MChantal said:

UPDATE

Today was our second appt. with Dr. Nowakowski in which, he confirmed it is NOT Hepatosplenic gamma delta t cell lymphoma!  Thank you Lord!

However, now they investigating what his case actually is...? We have meet with infectious disease this morning as well and they have took blood for cultures to rule out any environmental factors.  I think I also failed to mention that Kyle is a Corrections Officer at the County Jail in Albuquerque, NM. Which is why, they are consulting with infectious disease as well.

They know for a fact, it is the bone marrow that is "infected" to say, by depicting "atypical, small, and unable to hold iron RBC's." 

So now we are back to the guessing game. I am grateful and blessed that it is NOT that horrendous lymphoma to say the least. However, Kyle has now become frustrated with not knowning. Which is understandable. I am merely thankful that these doctors are sincerely concerned for him.

Well continue to keep you all updated. Thank you all, from the bottom of my heart. Truly.

 

Hi Michelle

Hi Michelle,

I've been following your posts and I'm happy to hear it wasn't that horrible lymphoma. I will be praying that you find out what's wrong with Kyle soon! Stay strong

Sincerely,

Liz

jimwins

MChantal said:

UPDATE

Today was our second appt. with Dr. Nowakowski in which, he confirmed it is NOT Hepatosplenic gamma delta t cell lymphoma!  Thank you Lord!

However, now they investigating what his case actually is...? We have meet with infectious disease this morning as well and they have took blood for cultures to rule out any environmental factors.  I think I also failed to mention that Kyle is a Corrections Officer at the County Jail in Albuquerque, NM. Which is why, they are consulting with infectious disease as well.

They know for a fact, it is the bone marrow that is "infected" to say, by depicting "atypical, small, and unable to hold iron RBC's." 

So now we are back to the guessing game. I am grateful and blessed that it is NOT that horrendous lymphoma to say the least. However, Kyle has now become frustrated with not knowning. Which is understandable. I am merely thankful that these doctors are sincerely concerned for him.

Well continue to keep you all updated. Thank you all, from the bottom of my heart. Truly.

 

Great news

Hi Michelle.  Two really good pieces of news today - you and Manda!  I hope they find out soon what the issue is and it's very treatable/curable.  Hugs to you and Kyle!

Jim

allmost60

jimwins said:

Great news

Hi Michelle.  Two really good pieces of news today - you and Manda!  I hope they find out soon what the issue is and it's very treatable/curable.  Hugs to you and Kyle!

Jim

Good news indeed...

Hi Michelle,

  I'm so happy it's not T-cell! Sounds like you have some good doctors working with you and Kyle and hopefully soon they will figure out exactly whats going on. Keeping you in my prayers. Best wishes...Sue

(FNHL-2-3A-6/10-age 62) In Remission!

DadysGirl

MChantal said:

UPDATE

Today was our second appt. with Dr. Nowakowski in which, he confirmed it is NOT Hepatosplenic gamma delta t cell lymphoma!  Thank you Lord!

However, now they investigating what his case actually is...? We have meet with infectious disease this morning as well and they have took blood for cultures to rule out any environmental factors.  I think I also failed to mention that Kyle is a Corrections Officer at the County Jail in Albuquerque, NM. Which is why, they are consulting with infectious disease as well.

They know for a fact, it is the bone marrow that is "infected" to say, by depicting "atypical, small, and unable to hold iron RBC's." 

So now we are back to the guessing game. I am grateful and blessed that it is NOT that horrendous lymphoma to say the least. However, Kyle has now become frustrated with not knowning. Which is understandable. I am merely thankful that these doctors are sincerely concerned for him.

Well continue to keep you all updated. Thank you all, from the bottom of my heart. Truly.

 

That's wonderful sweetie...

That's wonderful sweetie... Wishing you keep returning with better news each time...You both must be so relieved.. 

po18guy

Has another pathologist looked at the slides?

I ask this because the first pathologist in my case failed to note the extensive malignancy in both my lymph node and bone marrow that was examined. Lymphoma can be difficult to diagnose (in another forum, we lost a member who was misdiagnosed and treated for B-Cell lymphoma when she actually had T-Cell Lymphoma. When corrected, it was too late for her). If I were you, I would request that an outside source, proferably a large research facility that is familiar with T-Cell Lymphomas have a look at the slides. There are about 20 subtypes of T-Cell Lymphoma, all of them rare, and this is one that you definitely want to rule out. I almost lost my life to the mis-diagnosis that I received. 

LaureenRitchSTL

Hepatosplenic T-cell Lymphoma SURVIVOR info...

Hello!  Michelle, I hope that all is progressing in a positive direction.   I just happened upon this post after doing a search om HSTCL. I am posting this information for anyone that may also come across it during there desperate search for information.  You see, my husband was diagnosed with it in April 2012.  It was a year from hell, but he is now cancer free! HSTCL is not necessarily a death sentance any longer.  My husband was treated in St. Louis, MO at Washington University School of Medicine/Siteman Cancer Center by Dr. Nancy Bartlett. A summer of extensive chemo (IVAC) followed by an Allogenic bone marrow transplant (brother donor) is what saved my husbands life.  He is not the first to receive this treatment & survive.   If anyone needs information you can contact me @:  redelstein@centurytel.net  Best wishes to all & BELIEVE!!! It is imperative to survival to be strong & BELIEVE!!  Laureen

illead

LaureenRitchSTL said:

Hepatosplenic T-cell Lymphoma SURVIVOR info...

Hello!  Michelle, I hope that all is progressing in a positive direction.   I just happened upon this post after doing a search om HSTCL. I am posting this information for anyone that may also come across it during there desperate search for information.  You see, my husband was diagnosed with it in April 2012.  It was a year from hell, but he is now cancer free! HSTCL is not necessarily a death sentance any longer.  My husband was treated in St. Louis, MO at Washington University School of Medicine/Siteman Cancer Center by Dr. Nancy Bartlett. A summer of extensive chemo (IVAC) followed by an Allogenic bone marrow transplant (brother donor) is what saved my husbands life.  He is not the first to receive this treatment & survive.   If anyone needs information you can contact me @:  redelstein@centurytel.net  Best wishes to all & BELIEVE!!! It is imperative to survival to be strong & BELIEVE!!  Laureen

Thank you Laureen

     That is good information and I know Michelle and Travis need all the encouraging news they can get.  I think I can speak for everyone here that we are all very concerned for this nice couple but also very optimistic and your post added to that.  Thanks again

Michelle and Travis,

     Hope all continues to go well and you are able to remain upbeat.  You know you are both in all our thoughts.  Bill & Becky

 

mark6016

t-cell lymphoma

Sorry i have not been on here but my wife who beat it twice started getting bad headaches two years after her stem-cell tranplant so we went to the hospital and her brain was swollen so she was put on large does of steroids to reduce her brain swelling they did two brain biopsys the second one found the t-cell lymphoma had com back.She was cancer free in the rest of her body from the transplant but we was told the brain was seperate from the body so pet scans would not show it came back.Gina got neumonia from her steroids and passed away 1-11-14 .If your told your cancer free and start getting bad head aches go to the hospital and get a ct scan to see if there is swelling.Gina beat t-cell lymphoma twice for eight years but it keeps coming back if anyone want information you cat e-mail me at mark6016@gmail.com

jimwins

mark6016 said:

t-cell lymphoma

Sorry i have not been on here but my wife who beat it twice started getting bad headaches two years after her stem-cell tranplant so we went to the hospital and her brain was swollen so she was put on large does of steroids to reduce her brain swelling they did two brain biopsys the second one found the t-cell lymphoma had com back.She was cancer free in the rest of her body from the transplant but we was told the brain was seperate from the body so pet scans would not show it came back.Gina got neumonia from her steroids and passed away 1-11-14 .If your told your cancer free and start getting bad head aches go to the hospital and get a ct scan to see if there is swelling.Gina beat t-cell lymphoma twice for eight years but it keeps coming back if anyone want information you cat e-mail me at mark6016@gmail.com

Hi Mark

Thank you so much for sharing that information.  I'm so sorry for you loss.  You hang in there and you know you are welcome here anytime, buddy.

Hugs - Jim