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Hepatosplenic T-Cell Lymphoma

23 Jul 2014 22:15

Hello,

My daughter ( 41years) has an enlarged spleen, last week she has been diagnosed with HSTCL ( hepatosplenic T-cell lymphona) is there anyone familiar with this disease? there is not much on the net and apprently it is a very rare type of cancer, would appreciate any help with information.

Thank you

Monda

Re: Hepatosplenic T-Cell Lymphoma

24 Jul 2014 08:30 in response to monda

Hi Monda,

Welcome to this friendly and supportive forum and thanks for sharing your cancer story with us. I am sorry I can not help with any information.

I know what a worrying time this must be for you both and wanted to let you know there are loads of wonderful people on here who will do all they can to help you through the ups and downs of the cancer journey.

Sending best wishes to you both, Brian.

Re: Hepatosplenic T-Cell Lymphoma

24 Jul 2014 13:06 in response to monda

Hello monda,

Welcome to Cancer Chat! I had a look in our Cancer Help site and we have a section on different types of non Hodgkin lymphomas and there is a little bit of information on hepatosplenic T-Cell Lymphoma here but it does mention it is a very rare type.

Our nurses may have more information for you about this rare cancer.  Feel free to pick up the phone and give them a call on 0808 800 40 40 (it's free!) Monday to Friday 9am to 5pm.

I hope someone else with experience of this type of cancer will see your post and share their story with you.

Best wishes,

Lucie, Cancer Chat Moderator

Re: Hepatosplenic T-Cell Lymphoma

25 Jul 2014 10:53 in response to monda

Hello Mona,

Thank you for posting a question. I am sorry to learn about your daughter¿s situation.

As you probably know, lymphoma is a type of cancer that develops when the lymphocytes (white blood cells that are part of the immune system) start growing abnormally. Lymphoma can start in the lymph glands (nodes), spleen, or any other organ where there is lymphatic tissue. Most lymphomas are B cell which means that they start in the B lymphocytes that produce antibodies to fight infection. But a small number of lymphomas start in the T lymphocytes and are called T cell lymphomas. There are different types of T cells that do different jobs, but mainly they are involved in destroying invaders into the body like bacteria and viruses.

Lymphoma is not one disease but a collection of different sub types that can behave differently. Hepatosplenic T cell lymphoma starts in the spleen and commonly also involves the liver. Most patients are diagnosed because they have symptoms of an enlarged spleen.  They may have other symptoms that are common with other types of lymphoma. Doctors do not know what causes this type of lymphoma, but it is most often seen in people who have had a transplant and are taking drugs to suppress the immune system. 

Until the 1990s hepatosplenic T cell lymphoma was not listed as a separate type of lymphoma. But since it was named as an individual type, in the first 10 years after classification only 44 cases were listed in the medical literature. When a condition is very rare, it is going to be hard to find a lot of information about it and it may not be available. This can leave many people feeling very isolated, frightened and alone. But please be assured that with very rare conditions doctors will search the international medical literature for stories (case histories) from individual patients who have been treated with the disease and learn from this. They may even contact other specialists who have experience of treating the disease.

If you do a very casual search of the internet I am afraid that the small amount of information that you will find about hepatosplenic T cell lymphoma may not be particularly encouraging. This mentions an aggressive type of lymphoma which does not have a good outlook. But you do need to bear in mind that this is only a very general overview and there are reports of people who respond well to treatment. One bit of encouragement that I can give you is that it seems that women tend to respond better to treatment than men.

There is not really standard way of treating  hepatosplenic T cell lymphoma. But the treatment is similar to that of other types of lymphoma and it is likely to involve chemotherapy.  If your daughter is in reasonable general health her medical team may want to give her quite intensive treatment.

You and your daughter may be interested in knowing about The Rarer Cancers Foundation.  They provide support for people with rare cancers and their family and friends. Where possible they will try to help people with information and they may also be able in link you to someone else who has the same rare cancer. There is also The Lymphoma Association which provides information and support for people affected by disease.

If you think that it might be useful you are welcome to call the nurse team here to talk things through. Our freephone number is 0808 8004040. We are here from Monday to Friday between the hours of 9am to 5pm.

Kind regards,

Jean

Re: Hepatosplenic T-Cell Lymphoma

25 Jul 2014 22:00 in response to woodworm

Hi Brian,

Thank you very much for your kind words and support.

Regards,

Monda

Re: Hepatosplenic T-Cell Lymphoma

25 Jul 2014 22:02 in response to Moderator Lucie

Hi Lucie,

Thank you for your help, I will try to call for more information.

Regards,

Monda

Re: Hepatosplenic T-Cell Lymphoma

25 Jul 2014 22:27 in response to CRUK Nurse Jean

Hi Jean,

Thank you so much for taking the time to write me all this information that is very kind of you. See my daughter has no other symptoms at all except fo rthe enlarged spleen, she has never had any kind of surgery, she did and still does suffer from migraines all her life so she has taken a ton of different kinds of medication for this. Her appetite is good ( though the amount she can eat now is limited due to the size of her spleen, but the appetite is there).

She has never had any transplants or medication to suppress immune system, she has been seen an oncologist and he had her do blood work, bone marrow test, and CT scan, that was on the 18 of june and told us it would take a month to get the results, which we now have, but then he told her that this is what she has, and that he is no expert in that area and he would refer her to someone else, we haev to wait to receive a call, its the waiting that is killing her.....and me for that matter.

I do have a copy of that report which I have been spending most of my time trying to decipher it to no avail Sad the lingo is so confusing and I try with the help of the internet but its impossible and pretty frustrating, I was wondering if it would be too much to ask your help in translating it ??

THnak you again for giving me all the below.

Regards,

Monda

Re: Hepatosplenic T-Cell Lymphoma

28 Jul 2014 11:13 in response to monda

Hello Monda,

I appreciate that the waiting must be very frustrating.  Probably the best thing to do would be to keep getting in touch with her current consultant to find out when she is due to see the other specialist.  It might help to be persistent and to keep letting them know how anxious you are about this.

Interpreting scan reports is a very specialist area and ideally should be explained to a patient by their own cancer specialist.  We may be able to help to a degree as we can explain some of the medical terminology.  But there may be parts of the report that we cannot explain.

If you are a UK resident, we would probably be of most help if you telephone us and we can talk it through with you.  Our freephone number is 0808 800 4040 and we are open from Monday to Friday, 9am to 5pm.

If you are not a UK resident, we have information about organisations from countries outside the UK (some of which have an email and telephone service) on our website here.

I hope this helps,

Take care,

Helen

Re: Hepatosplenic T-Cell Lymphoma

28 Jul 2014 22:56 in response to CRUK Nurse Helen

Hi Helene

Thank you for yoru below reply, in the meatime we did hear back (thank God) from the onlcologist and she did a spleen biopsy 2 days ago and has an appoinemtment with a specialist in this area on Friday this week, prayers would be very welcome.

Thank you again I will keep you posted with the results from the specialist.

I would appreciate any help, we live in Toronto Canada.

God Bless,

Monda

Re: Hepatosplenic T-Cell Lymphoma

18 Oct 2014 12:35 in response to monda

Hello Everyone,

It has been a couple of months since my last post, and I wanted needed to post an update to all the people that showed me kindness and support when needed.

This was the worst summer of our lives, the doctors were sure my daughter has HSTCL, and were ready to strat chemo, but somehow they were not 100% sure; as other than her enlarged spleen, and her low HMG she was in very good health and not HSTCL sympotomatic at all; after conferring with other doctors on the team, they now finally are 100% sure it was not HSTCL ( thank the Lord) it is LGL T-cell leukemia (large granular leukemia). This called for a celebration even the oncologist announced this as Very Good news to us, so now she is on MTX ( methetraxte) once a week 12,5mg, but the three days following the dose she is wipped, she has unbearable nausea, cannot eat, and sleeps all days and nights, but please understand that this is not a complaint at all we (including my daughter) are soooo very grateful and we will take this any time, I just wanted to know if anyone experiences these symptoms, the OC said the dose is so low she should not get any symptoms but she is.

Thank you so much in advance,

Monda