Hepatosplenic T Cell Lymphoma (HSTCL)

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 [email protected]

Please. Thank you.

Michelle

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Comments

  • DadysGirl
    DadysGirl Member Posts: 346
    Pls check mark6016 I just saw

    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
    DadysGirl Member Posts: 346
    Check this pls mark is also

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

     

    http://csn.cancer.org/node/136135
  • MChantal
    MChantal Member Posts: 107
    DadysGirl said:

    Check this pls mark is also

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

     

    http://csn.cancer.org/node/136135
    Thank you so much. I truly

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

  • girliefighter
    girliefighter Member Posts: 232
    thinking of you both

    Sending you prayers

    carie

  • illead
    illead Member Posts: 880 Member
    Hi Michelle

    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

  • po18guy
    po18guy Member Posts: 1,298 Member
    Another T-Cell patient

    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.  

  • Rocquie
    Rocquie Member Posts: 859 Member
    Michelle, Try not to worry

    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
    MChantal Member Posts: 107

    thinking of you both

    Sending you prayers

    carie

    Thank you very much.

    Thank you very much.

  • MChantal
    MChantal Member Posts: 107
    illead said:

    Hi Michelle

    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

    Thank you Bill and Becky. You

    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.

  • MChantal
    MChantal Member Posts: 107
    po18guy said:

    Another T-Cell patient

    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.  

    Thank you po18guy. I

    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.

  • MChantal
    MChantal Member Posts: 107
    Rocquie said:

    Michelle, Try not to worry

    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

     

    I want him to know I am here

    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.

  • illead
    illead Member Posts: 880 Member
    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

  • Rocquie
    Rocquie Member Posts: 859 Member
    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

    Caregivers

    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
    illead Member Posts: 880 Member
    Rocquie said:

    Caregivers

    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

     

    It's tough

    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

  • girliefighter
    girliefighter Member Posts: 232
    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

     

  • jimwins
    jimwins Member Posts: 2,107
    MChantal said:

    I want him to know I am here

    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.

    Welcome

    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

  • DadysGirl
    DadysGirl Member Posts: 346
    MChantal said:

    I want him to know I am here

    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.

    Michelle, how did the

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

  • po18guy
    po18guy Member Posts: 1,298 Member
    MChantal said:

    Thank you po18guy. I

    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.

    A word of caution

    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. 

  • MChantal
    MChantal Member Posts: 107
    DadysGirl said:

    Michelle, how did the

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

    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.

     

  • MChantal
    MChantal Member Posts: 107
    jimwins said:

    Welcome

    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

    Thank you Jim

    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!