CancerCompass message board discussion started by Debrose on 9/17/2005 http://www.cancercompass.com/message-board/message/all,2980,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I'm 50 and was diagnosed with LGL Leukemia 2 years ago. During that time we've just been monitoring my white and red cell counts. The end of July I started on a research trial because the trend over time was that my red and white cells continued to decrease. I am 2 months into treatment with methotrexate and prednisone (just coming off the prednisone now). My white cells look good but I have very bad anemia requiring transfusions every few weeks. Has anyone else been on this trial (I think ECOG or Mayo is the sponsoring agency)or taken methotrexate with a succesful outcome? Deb Debrose Sat, 17 Sep 2005 00:00:00 GMT I was diagnoised with LGL 2 years ago after 2 years of searching for a DX and 3 years before that with a hemotoligist searching for a cause of low blood counts. Have been to the National Cancer Institute and then to Hershey PN to the Doctor who is said to have found the type cancer. Currently in a study with him. My cancer cells don't match any other with my pathology sent to labs all over the US and a few other countries none would write this up as any known cancer. My DX came primarily from symptoms altho with an additional 5 atypical symtons and or conditions. I wonderif my DX is correct. After unsucessful attempts with Clclosporin and then Methotrexate without prednisone in 2004. Neither of these treatments went the duration as my counts and symptoms worsened and other complications. I have been put on hold for treatment hoping for a new development. Two other options are said to be available, yet considered less sucessiful than mexotreate and much more difficult. Don't know what they are. January 2005 my spleen was removed weighing a massive 5.4 lbs. and my counts have improved greatly, however, my symptons and discomfort have not. My liver is inlarged and increasing in size with each checkup, but no cancern is being shown. I am 41 years old. Have you had any simularities or other treatment attempts. Have you been given a prognosis? Amos Moses 1 Tue, 14 Mar 2006 00:00:00 GMT I was diagnoised with LGL 2 years ago after 2 years of searching for a DX and 3 years before that with a hemotoligist searching for a cause of low blood counts. Have been to the National Cancer Institute and then to Hershey PN to the Doctor who is said to have found the type cancer. Currently in a study with him. My cancer cells don't match any other with my pathology sent to labs all over the US and a few other countries none would write this up as any known cancer. My DX came primarily from symptoms altho with an additional 5 atypical symtons and or conditions. I wonderif my DX is correct. After unsucessful attempts with Clclosporin and then Methotrexate without prednisone in 2004. Neither of these treatments went the duration as my counts and symptoms worsened and other complications. I have been put on hold for treatment hoping for a new development. Two other options are said to be available, yet considered less sucessiful than mexotreate and much more difficult. Don't know what they are. January 2005 my spleen was removed weighing a massive 5.4 lbs. and my counts have improved greatly, however, my symptons and discomfort have not. My liver is inlarged and increasing in size with each checkup, but no cancern is being shown. I am 41 years old. Have you had any simularities or other treatment attempts. Have you been given a prognosis? Amos Moses 1 Tue, 14 Mar 2006 00:00:00 GMT I'm afraid my symptoms are not yet similar to yours (ie. my spleen and liver seem to be holding OK for now). I've now been on methotrexate for 8 months. I had 3 months of normal feeling--which was fabulous, but I feel like I am having a relapse now. I have yawning (shortness of breath), fatigue, and bruising again--the first symptoms that I had prior to diagnosis. Also my ANC (absolute neutrophil count) dropped from 1,000 to 400 last week. No one has given me a prognosis, but we were hoping for 10 years...of course with the hope that some new drug or treatment would come along by then. I'm sorry that you've been feeling so crummy. I know all of us with LGL appreciate any good days that come along. Best Regards, Deb Debrose Sun, 19 Mar 2006 00:00:00 GMT Thank you for your response. I am happy for you that your symptons are not like mine yet and pray that they never are. I often wi\onder if the methoterxate would have done me any good had i been able to stay on it. Both cyclospoir and methotrex each treatments were discontinued after 6 wks. My counts droped early. I began hemhoraging (sp?) From the nose requireing a four day hospital stay and several pints of whol blood. Then all trtmnt stopped. They never said that they were re;ated but my numbers dropped and my general health so it was discontinued. I then was sent to dr. Loughren in penn. Joined his study but have had no treatment except the removal of spleen one year ago. My white counts and hemo. Rose to nearly normal within hours of the surgery, but my energy never has and i have been sicker these past 2 months that ever before. My counts are still pretty good but gradually dropping. Will see the oncologist this wed. And hope to get some hope. Has anyone out there had any treatment other than methotrexate, methotrex with prednazone, or cyclosporin?? If so please tell me what, about it and how you responded, or what to expect. Also are there alot of problems with rematiod arthritis? This message board has done more for me than anything....just knowing that others are out there and understanding the frustration and fears. God bless you all. Amos Moses 1 Sun, 19 Mar 2006 00:00:00 GMT Hello, I am a 74 year old white male who was recently diagnosed with T-cell Large Granular Lymphocyte disorder. About 10 years ago in a routine blood workup, the doctor told me I had abnormal red blood cells and to keep watch over them. Doctors have mentioned these abnormal shaped cells for years and no one has put a name to them. This past year I have been fatigued and have a just run down feeling that I attributed to old age, even tho I am active, not overweight, and walk each day. In a routine blood test a month ago, my HGB was 8 where last year same time it was 12.8. A bone marrow biopsy confirmed T-cell LGL. Weekly blood tests confirm that HGB is rapidly decreasing, down to 7 currently. My ANC is just over 1000. Dr. Loughran has a study using Zarnestra, an experimental drug. Has anyone heard of this drug? Anyone using it? Currently I am in week two of Methotrexate with no side effects so far. If blood levels fall lower, hematologist strongly recommends blood transfusions. Is there anyone out there who can advise me about the treatments they are currently using? Thank you for any information you can give me. Edward Ogeezer Thu, 13 Jul 2006 00:00:00 GMT hi i had lgl 10 years ago, at that time they just said that i had a very low white blood count. after about 6 bone morrow biopsys they said it was lgl. at that time none of the cancer research could give me much info. on this type of leukemia. i went to the hup in pa. and the doctor (david porter) took the time to really to to me about lgl. i had cemo. on and off for about 6 months.i had no white cells. i was getting blood everyday.high fevers (108) the treament was very hard but today i am doing great no meds. just check-up twice a year. all the meds. that you are taking i did them too. i developed allergies to a lot of meds.(all cillins like penicillin ofloxacillin, erythomycin and so on) when i went home i had to do home infusions for about 6 months.the meds. my liver and spleen and kidneys are all fine. i pray that all of you recover from this and i thank god everyday that i am doing great. god bless you. Mommomdawn Thu, 16 Nov 2006 00:00:00 GMT I am so glad to hear of even one success story with LGL. I am at what the doctor says is the "point of no return for my liver failure". She tells me that liver involvement to this degree has not been seen before. Again very happy to hear from you....in 4 years I have found no one who has been successfully treated. I am currently on Cytoxan and showing no improvement, but was only given 20% hope for success. Have previously tried Cyclosporin and then Methotrexate which worsened my condition. Not eligible for trials due to liver. At this time I am seeking anyone who can tell me what to expect if liver continues to fail. Keeping in touch with you all has been a tremendous help for me. God Bless, Amos Moses Amos Moses 1 Thu, 16 Nov 2006 00:00:00 GMT I forgot to ask what chemo where you on?? I am up for another try at something else in three weeks if the cytoxan doesn't do something drastic by then. Again, would love to know what worked. Thanks, Amos Moses Amos Moses 1 Thu, 16 Nov 2006 00:00:00 GMT Someone asked about the effects of LGL.  This condition usually travels with 3 others - neutropenia, hemolytic anemia, reumatiod arthritis.  I know this because my daughter had the first three before the doc diagnosied LGL.  Her diagnosis was complicated by the fact that she was born with a primary immune deficiency and then had non-hodgkins lymphoma.  She was treated with cyclosporin but there was no response.  She had been on gamma globulien all her life because of the immune deficiency.  She had hit the life time limit on the other drugs commonly used to treat LGL when she went through 2 years of chemo for her NHL.  However, the good news is she had an allogenic (non related) stem cell transplant 5 months ago and is disease free!!!  Not sure that this should be the first line of treatment but for those of you that have tried everything else with no response it might be worth looking into. Maxie57 Wed, 27 Dec 2006 00:00:00 GMT Didn't know who to send it to but it might be of interest to you with your title of caregiver. I was diagnosed a little over 2 yrs ago, am 59yo male.  Was in a weapons reliability program with regular screenings.  Doctors somewhat blew it off. My RN wife had questioned CBC results for some time and pushed for a resolution.My blood levels have been stable to slightly improving, neutrophyl/lymphocyte levels far better than the concern level for oncologist. No symptoms other than aerobic performance declined about the time that they think I got it.  Living at 7150' exacerbates the aerobic issue.  Weight lifting is fine.  BizarreOncologist says to do nothing other than get adequate rest and avoid sick people.  Says methotrexate is the drug if things get worse.Interesting hearing of other's symptoms, particularly since this is a rare ailment.  Don   Donaldd Thu, 18 Jan 2007 00:00:00 GMT HiI was diagnosed with LGL leukaemia 3 years ago, though my Dr suspects I had it in a benign form for some time. I live in Nelson, New Zealand and have never met another person with this condition, nor have many of the doctors I've been treated by.  Last year I went onto the Penn register, headed by Dr Loughran and after failing methotrexate and cyclosporine (which at least gave me stunning eyebrows) he suggested I go onto Cytoxan.  I know nothing about this drug, hence my web search and discovery of this cancer site and message board. I'd value knowing more of your experience with Cytoxan and whether there are any side effects. This has been a lonely road for me. Initially I was fine, other than for minor infections, then my neutrophils dropped to .2 and the trouble started.  I've since developed severe asthma, following chest or sinus infections and acute head pain and ataxia, which has been put down to having an ESR reading of >140.  There is some confusion whether this inflammatory condition is or isn't related to my leukaemia.   The town I live in is too small for a haemotologist, so my supervising physician is an oncologist.  It is very hard for him too. Nevertheless I continue to write (I'm a free-lance fiction writer) when well and sometimes when not and as I'm unsure what the future holds, I treasure the moments.  I'll read any replies with great interest as they may lessen my isolation. It has adrienne Wed, 30 Jan 2008 00:00:00 GMT Is it not amazing how extensive yet how little is known about LGL? I have not found any good results yet. DX  Oct. 2007  My pain level has increased rapidly and is difficult to have all Drs. working together, when most are not familar to LGL. This site has been the most help so far. Lucky for you that you don't have to work in the public. I hope you are able to get some good care. Do a lot of research and be proactive with Doctors.With blessings  TJ tjteresa Mon, 04 Feb 2008 00:00:00 GMT