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Hepatosplenic T Cell Lymphoma (HSTCL)

MChantal's picture
MChantal
Posts: 92
Joined: Apr 2013

Hello everyone,

My fiance and I just found out the news yesterday that he has this very rare disease Hepatosplenic T cell lymphoma. We are from Albuquerque, NM and are being sent immediately today to the MayoClinic in Rochester, MN.

I told myself, not to read the internet about this type of cancer. However, I could not help it. I am in so much pain and hurting. Is this reality?

It started back at the end of January, after my fiance got a root canal.  He went to work and came home with  flu-like symptoms (fever, aching body, slight cough, etc) in which, we went to an urgent care.  This doctor did nothing yet, grab some blood work that did depict low WBC's count. However, she stated, "it must be something viral" and should diminish over a couple weeks. I was not satisfied at all. We scheduled an appt. with his PCP.  His PCP misdiagnosed him for the flu as he failed to get his flu shot Fall 2012. He recieved Tamiflu, a "Tussin" cough supressant, and Amoxcillin. However, after 2-3 his symptoms did not subside and he ended up breaking out in a welt formation of bumps along his chest area and back.  We went back to his PCP. His PCP said he must have an had allergic reaction to something the dentist may have given him.  He was than sent for blood work as well.  Again, we recieved another antibiotic, antihistamine and a steriod shot.  Well, the blood again came back with a low WBC count, high AST/ALT liver enzymes, high MVC, and high LD.  His PCP said it's probably Hepatitis A. (As terrible as that sounded at the time, I would kill for that to be his diagnoses now). The welts on his back were still somewhat persistent and at this point he had lost 23 lbs and had the extreme night sweats.  We scheduled to meet with his dermatologist.  The dermatologist is the individual who got everything on the road and she found the links of the biopsy from his skin to be a link with some type of lymphoma.  Landing us to the beginning of March where we had to wait 3 weeks to see the oncologist/hematologist. However, once we did eventually see him. Everything was extremely fast. We scares me so much.

It is present day, April 17, 2013 we are headed to Rochester, MN today at 2:50 because this cancer is so rare and aggressive. Kyle just turned 23 years old on April 9th. This is not suppose to be happening to us, yet it is.

I need help. I need advice. I need to hear from those suriviors or anyone that knows a surivior.

Those that do have this type of horrendous cancer, please contact me. On this website or through my email Mchantal@salud.unm.edu

Please. Thank you.

Michelle

DadysGirl
Posts: 305
Joined: Aug 2011

Pls check mark6016 I just saw some info as I searched looks like someone's wife had it for five yrs then cam back and had more cant think of name more treatments and now cancer free. I looked it upfast quacidly as need to leave the house... Pls check it out ..pls let me know if you can't find it and I will copy paste for you that's a positive one I ran into as did quick search for you... Take care hon

DadysGirl
Posts: 305
Joined: Aug 2011

Check this pls mark is also there more positive stuff saw there too 

 

http://csn.cancer.org/node/136135

MChantal's picture
MChantal
Posts: 92
Joined: Apr 2013

Thank you so much. I truly appreciate it. Thank you!

girliefighter's picture
girliefighter
Posts: 194
Joined: Mar 2013

Sending you prayers

carie

MChantal's picture
MChantal
Posts: 92
Joined: Apr 2013

Thank you very much.

illead's picture
illead
Posts: 475
Joined: Aug 2012

Please know that we are thinking of you both.  We are all here to comfort and support you.  You will find some very caring people here.  We know this is a terrible blow for you both but from some of the entries about your fiance's lymphona there is some hope.  If you can't find those posts just click on lymphoma at the top of this page and type in the name under "title" and it will give you the places to click on.  There is some not so good info but also some very hopeful info.  Some of those posts were a few years ago and know that there is so much research going on that there is always something new being developed. Our prayers are wiith you both. Bill & Becky

MChantal's picture
MChantal
Posts: 92
Joined: Apr 2013

Thank you Bill and Becky. You are right. There has to be hope otherwise, what else is there. I believe and have faith that my fiance will fight through this.

po18guy
Posts: 237
Joined: Nov 2011

I am being treated for lymphoma that appeared to be AngioImmunoblastic T-Cell Lymphoma (a cousin of HSTCL), but wasn't. It is an unknown sub-type at this point. You can click on my username to get a bit of my history. I have beat all odds and am at the 5 year mark. I began with with a mis-diagnosis or non-diagnosis, actually, and had widespread disease ("innumerable tunors") and bone marrow involvement. As to your current plan, the Mayo clinic is probably a good choice. With the rarity and agressiveness of most T-Cell Lymphomas, I strongly suggest a second opinion at an academic research facility that specializes in T-Cell Lymphomas. Sometihng like MD Anderson, Dana-Farber, Memorial Sloan-Kettering, Fred Hutchinson or the like. Very few general oncologists will have ever seen a case. A lot more is known about defeating these than was known when I began this journey in 2008. I am receiving a non-chemo HDAC-Inhibitor drug (Istodax, or Romidepsin) that has kept me in remission for four years now. There is a lot of hope. It just takes some searching to find.  

MChantal's picture
MChantal
Posts: 92
Joined: Apr 2013

Thank you po18guy. I apperciate this information and you give me hope for my fiance. I tell myself, he will overcome this and beats the odds just like yourself.  We wanted to go to MD Anderson however, our oncologist at home recommended a Dr. here at the MayoClinic because he specializes in nothing but lymphoma. I will though strongly enforce a second opinion from the MD Anderson center. My fiance is such a strong, caring and young man. I don't see why such good people go through things like these. It does not make sense.

po18guy
Posts: 237
Joined: Nov 2011

Even though a doctor may be at the Mayo Clinic, and well experienced in lymphoma, that does not guarantee any experience at all with T-Cell Lymphomas. These are different animals, and are diagnosed, treated, and provide outcomes that are quite different from B-Celll Lymphomas. T-Cell outcomes generally range from poor to very poor. It is critical to locate someone who has dealt successfully with this extremely rare and aggressive sub-type. The primary treatment option might be a clinical trial, as there is no standard treatment for this sub-type. The old standby of using CHOP against it may only end up helping the lymphoma against the patient. Do not be afraid to travel cross-country, as it can make all the difference in the world. 

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Michelle, Try not to worry that things are moving extremely fast--you want and need that. You would not want to continue on with the food dragging and mis-diagnosing. As bad as it is, at least you know what you are dealing with. So many medical advances have been made and are being made daily with cancer treatment. There is hope.

Your fiance needs you to be brave and strong. Come here to show your fears and weaknesses with us. We understand.

I'm praying for you both.

Rocquie

 

MChantal's picture
MChantal
Posts: 92
Joined: Apr 2013

I want him to know I am here regardless, of what we hear today. I am trying so hard to be strong for him. Yet, it doesn't feel like it is enough. If I could, I wish I could just take some of it away from him. I wish today when we walk into the appt. that we hear, this can be cured. You will be okay.

I pray to God, that he is hearing all of the prayers that everyone is doing for him. It is so chaotic, surreal, and crazy to know that in such a horrid time can be such a blessing.  Not for the disease itself however, the amount of people family and friends we are blessed with in our life.

Like yourself and everyone else on this site, you all are right. Within the medical field there is constantly new advances and miracles everyday.

I believe. I have faith. Everything happens for a reason.

Thank you Rocquie.

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Hi Michelle and welcome to the group.  Please let your fiance know he is welcome to come here also. There are lots of wonderful folks on this site.  Hard as it is to have cancer, I sometimes think it's even tougher for caregivers and loved ones - they often feel so powerless.  All I can recommend is maintain good communication with your fiance.  I'm sure he knows you are there for him, Michelle.  Be careful not to forget about yourself - you have to maintain your health (mental, emotional and physical) as well and you can't do everything though you may want to.  I can say (as well as others here), cancer changes your life forever but many positives do come from this experience.  It's a hard journey but not imposssible and both of you have friends here - always remember that.

I wish you guys the best and please stay i touch :).

Hugs - Jim

MChantal's picture
MChantal
Posts: 92
Joined: Apr 2013

I can't help but feel so powerless. This is a whole other level of growing up and responsbility at the age of 23, for Kyle and I. It's like I am trying so hard to be here as a "safe place" for Kyle when inside I am screaming, "I just want my mom!" I definitely know this is going to change everything especially, my perspective on life itself.

Yet, I feel so blessed even with this website, to know that people feel exactly like I do right now. I fear that as scared as I am, Kyle must feel ten times worst and I can't take that away from him.

I feel the prayers though, for strength, hope and faith.

Thank you Jim!

DadysGirl
Posts: 305
Joined: Aug 2011

Michelle, how did the appointment go? Thinking of you both... 

MChantal's picture
MChantal
Posts: 92
Joined: Apr 2013

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.

 

DadysGirl
Posts: 305
Joined: Aug 2011

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's picture
illead
Posts: 475
Joined: Aug 2012

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

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Michelle and Becky, I could not have asked for a better caregiver than my beloved husband has been. I have often wondered which would be more difficult--being the patient or the caregiver?

Rocquie

 

illead's picture
illead
Posts: 475
Joined: Aug 2012

I don't want to be the survivor, but then I don't know the other side.  There may be some unwarrented guilt, not to mention the worry for the caregiver.   It's just one of the heinous sufferings of this old system.  Thank you so much for caring Rocquie, I know we all wish we could do more for each other.  Thank goodness for your dear husband.  BTW, you pushed my cry button today but I'm fine, sometimes we need that.  Thinking of you, Becky

MChantal's picture
MChantal
Posts: 92
Joined: Apr 2013

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's picture
MChantal
Posts: 92
Joined: Apr 2013

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.

 

girliefighter's picture
girliefighter
Posts: 194
Joined: Mar 2013

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

 

MChantal's picture
MChantal
Posts: 92
Joined: Apr 2013

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.

illead's picture
illead
Posts: 475
Joined: Aug 2012

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's picture
MChantal
Posts: 92
Joined: Apr 2013

Today was our second appt. with Dr. Nowakowski in which, he confirmed it is NOT Hepatosplenic gamma delta t cell lymphoma! Laughing 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's picture
illead
Posts: 475
Joined: Aug 2012

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's picture
anliperez915
Posts: 739
Joined: Sep 2011

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's picture
jimwins
Posts: 1971
Joined: Aug 2011

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's picture
allmost60
Posts: 3149
Joined: Jul 2010

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
Posts: 305
Joined: Aug 2011

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

po18guy
Posts: 237
Joined: Nov 2011

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
Posts: 11
Joined: Apr 2012

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's picture
illead
Posts: 475
Joined: Aug 2012

     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
Posts: 4
Joined: Jan 2012

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's picture
jimwins
Posts: 1971
Joined: Aug 2011

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

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