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scared crazy
New User
Joined: 21 Aug 2006
Posts: 4
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 Posted: Mon Aug 21, 2006 7:03 pm Post subject: angioimmunoblastic t cell lymphoma |
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Hi there. I am new here and not sure how to go about this. My husband has been diagnosed with angioimmunoblastic t cell lymphoma which we understand is a rare type of non hodgkins. At first the tests and all were slow moving now they are doing chemo every 2 weeks and looking to do a bone marrow transplant. This is the scariest part. Does anyone know anything about this or where one can find info, it is scary as they are moving real fast with this. It seems to be moving fast and they have said it is stage IV.  My heart goes out to everyone that is dealing with this stuff. |
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SHANELLE85
Regular
Joined: 06 Jun 2006
Posts: 31
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| Posted: Mon Aug 21, 2006 11:25 pm Post subject: Re: angioimmunoblastic t cell lymphoma |
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hi, very sorry 2 hear about ur husband.. its never an easy thing 2 come 2 terms with, whether its u or somebody close 2 u that has been diagnosed.
Ur life just gets turned upside down in an instant, and ur right everything gets moving at such a fast and frantic pace u just feel so lost and confused.
i got diagnosed with hodgkins lymphoma last year just a month after my 20th birthday and i know how ur husband must feel.. even though our diagnoses were very different u still have the same fears.
wen i got diagnosed i wanted 2 find out as much as i could about my disease and there is alot of info on the internet of couse, usually i just used a search engine like GOOGLE and i found wot i was looking 4! but plz dont believe every single article u read.. and i would say that its probably not a good idea 4 ur husband 2 read these continuosly 4 the simple fact that the info does get stuck in ur brain and can get u down dramitically not 2 mention how much doubt it will bring in some things u read.. coz it happened 2 me and i was just believing everything i read and it made me psychologically unstable. so just b aware of that.
anyway i hope i have helped u in some way good luck in the near future and now 4 that matter.. keep strong.
--shanelle--  |
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scared crazy
New User
Joined: 21 Aug 2006
Posts: 4
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| Posted: Tue Aug 22, 2006 7:09 pm Post subject: Re: angioimmunoblastic t cell lymphoma |
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Thank you for the info. U are right the sites can get you down and I tend to think they are all right. I really want to think the best but it just sits there in your mind... I have looked for sites for someone to talk to but this is the only one I have received a reply. Thank you so much for that it helps to know someone is listening. I am really sorry to hear you are dealt such a tough struggle. My heart goes out to you and I hope things work well. It sounds as if lymphoma can be a struggle. Take care and thank you again!!  |
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Life_101
Regular
Joined: 22 Apr 2006
Posts: 20
Location: N.E. Ohio
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| Posted: Tue Aug 22, 2006 9:51 pm Post subject: Re: angioimmunoblastic t cell lymphoma |
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Hi, Sorry to hear about your problem. I know at times trying to
understand what's going on can be very difficult. I have Hodgkins so I
can't give you any advice but here is a link that has a lot of info on your
particular problem.
http://www.nhlcyberfamily.org/types/angio.htm
Hope it helps. Good luck. |
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RJS
New User
Joined: 25 Sep 2006
Posts: 3
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| Posted: Mon Sep 25, 2006 9:54 pm Post subject: AILT aka AITL, AILD et al, But not CTCL |
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| Hi, I sincerely hope this info reaches you ASAP and is helpful to you and your husband. I had been extremely healthy for 59 years until I received an insect bite on the back of my scalp in June 2004. Soon I had extensive itching on arms & legs, enlarged lymph nodes in neck, etc... Repeated tests showed nothing. For 15 months I went everywhere and got nowhere. Spent a forthue, too. Then, in Aug'05 I was diagnosed with AILT (via biopsy with flow cytometry) and went thru 6 chemo treatments. I was told I was clean in Jan'06 (felt great, again) only to be told in Apr'06 that it had returned. Check if EBV and/or CMV levels are high. With AILT you can do 4 to 5 chemos, then stem-cell and radiation over 3 to 5 years and the result will almost certainly be the same...not good. You absolutely need a specialist in AILT because there is very little info avail & little research $$ investment. Check-out Mayo Clinic (Rochester, MN), MD Anderson (Orlando, FL), Stanford Univ (CA), Memorial Sloane Kettering Hospital (NYC) for concentrations of AILT experience and treatment capabilities. Also, very important: look into recent immunotherapy treatments of AILT at these sites using Thalidomide, Bevacizumab, Cyclosporine. Stanford Univ has sponsored a Cyclosporine Phase II Clinical Study (worth looking into). I will enter Cyclosporine treatment this week. Check-out this site : www.abstracts2view.com/hem/view/php?nu=HEM3L1_462 These authors are the who's who in USA AILT experience (others at Mayo Clinic and MD Anderson). Best of luck - hope this helps. Rob |
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