CancerCompass message board discussion started by Mom of Teen on 1/26/2006 http://www.cancercompass.com/message-board/message/all,4256,0.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/ My son was diagnosed with lgl leukemia when he was 14. Our lives have never been the same since. He is now 18. He had his spleen taken out several months ago. It was 16 times larger than it should have been. He is always tired. The worst thing is that he gets fever and infections so easily. His anc has been 0 many times. It is always super low. He tries to work but has to miss most of the time. He takes penicillen and gcsf shots. He was on methotrexate for 2 years. He has been hospitalized many times. It is very rare for a teen to have this. I've read how people die within 10 years of being diagnosed of this. It worries me. What should I expect? Is their any other treatment? Has anyone had any experience with this disease? It's like no one knows much about this. Thanks. Mom of Teen Thu, 26 Jan 2006 00:00:00 GMT Dear Mom of Teen: I can not offer you the magic bullet that you want. I can only offer my sympathy and understanding at this time. My daughter, now 50 years, was first diagnosed as having an unrecognized blood disorder that seemed something like leukemia when she was 5. Her health has been a roller coaster ever since with hospitalization for many different infections, a curse of the worst imaginable exzema, in agony due to ulcerations in mouth and other cavities and on and on. Last year, she was diagnosed with LGL Leukemia. For the last 3 months, she has received monthly intravenous doses of gamma globulin to help maintain her red blood count and they seem to work for the time being. Who knows what the future holds for her and for those who love her? But there is a bright side. She is married and enjoying her good spells though her desire to have been a mother can not be realized. She holds a full time job. Whenever she is well enough, she participates actively in our family life. My wife has been responsible for bringing her this far, bless her. She cared for her meticulously even to a limited degree after her marraige. So we thankfully have some good times to enjoy and remember. Hope is what you have. Defy the odds and believe that with care there will be many years of togetherness ahead. That is what has kept us going. It will work for you too. ALC Alcav Thu, 23 Feb 2006 00:00:00 GMT Thanks so much for your message. I am very sorry to hear about your daughter. I am sorry she has had so much trouble and pain. Jeffrey has mouth sores, also. So far, they have not been bad enough to be hospitalized for. He had to go to the hospital this weekend for fever, sore throat, etc. He is okay now. He is so weak and tired all the time. I know what you are going through as the caregiver and parent. It's so hard to not know whats in the future and your heart is constantly sad. I will pray for you and your daughter. Please pray for us also. Thank you. Betsy Mom of Teen Tue, 07 Mar 2006 00:00:00 GMT I am 41 and was dx 2 years ago. 2 yrs. prior searching, 5 bone marrow biops. and every other test 3X plus many not cancer related. Monitored by a hemotologist 3 yrs. prior to 2 w/ oncology My spleen was removed Jan.04 weighing 5.04 lb. blood counts increased, but w/o other improv. Constant sinus inf. and pneumonia last May. My liver is also enlarged and moreso each checkup. Cyclosporin and Methotrexate both tried and canceled after 3 mo. & 6 wks respectively, no improvmnt in bld counts and w/more negative effects. No treatment since 4-04. been to Ntl Cancer Inst. and Hershey PN where Dr.Laughren has 3 researches going, he discovered this 20 years ago. I like him alot,personnaly answers e-mails & all ??'s. He said life expect is up to 20 yrs now & more. I too an miserable ,sweats not so bad, a high fever every night and have 6+ nose bleeds daily. No energy and just feel lousey all the time. My wife keeps me encouraged with hope and a strong faith in God. Would love to keep contact and know that we will pray for you & son. Amos Moses Amos Moses 1 Tue, 14 Mar 2006 00:00:00 GMT Thanks for answering and your prayers. I will pray for you. I would love to keep in contact. Jeffrey had to go to the hospital twice this week with a fever and congestion. We were told that he could wait 2 months before coming back- which would be great for us. But, he goT sick after just one week. We have been to see Dr. Laugran too. His mouth has been bleeding. I worry that the Drs. are not telling us what they suspect. Betsy Mom of Teen Sat, 18 Mar 2006 00:00:00 GMT I don't think that the doctors know what to expect. EXAMPLE...I refused to have my spleen removed for two years...my thinking that if it is holding cancer cells, then where will they go after that? I was constantly told that it doesn't work this way and not to worry. At 5#'s my spleen had to be removed and guess what....the liver was the next victum. one year after slpeenectomy my liver in now failing. 3+ X's normal size, jaundice and the worst of it are the fevers. 101. every night for months and now up to 102.8 lastnight. 2 weeks ago I was scheduled to start CHOP kemo and told that the only side efects would be hair loss, that I would feel better while on this treatment than I do now. 1 dose every three weeks for 5 months. The doctor also mentioned that Dr. L has published a new report. before treatment began Dr. L sugested we try cytoxan (oral) before going to the CHOP. Well, I found his report and have been very discouraged. He states about CHOP that "the response rate is poor and most patients die within one year of the start of treatment" he also states that "spleenectomy is usually ineffective in correcting neutrophil counts and may increase circulating LGL cells" (my point exactly) I have looked up Cytoxan :may cause bladder damage, may develope a secondary cancer that may occur up t several years after the drug is given. Warnings: at increased risk for toxic side effects if you have: blood disorder (low white or platelet counts), bone marrow tumors, kidney disorder, liver disorder,(that's me), past anticancer therapy(what does that mean?) past x-ray therapy. I am at a loss as where to go from here. I guess this is the reason for reasearch and why it is necessary, Hope is what keeps us going but I don't think that I want false hope. I am pretty sure now that I don't want to be the guinnea pig either. I do know that each time I have been on treatnemt I felt worse than when not, that I don't see much point in trying a treatment where I an most likely to die within one year, nor one that is likely to cause toxic damage to the very organ that is the current problem. The long and short is, it is time for me to reflect on the great and positive parts of my life, to decide that it has been worth living, remember to put my hope in God who is the Master Physician, the creator and owner of every day that I live, and that if He chooses to allow me to live; in health or in pain, that it is His right to choose, not mine. He died for me, I live for Him. Although, I don't like the path He has given me I trust Him fully to lead, provide for , and protect me and mine both in my days alive and those after. God really is our only Hope no matter who we are, healthy of ill, rich or poor, loved or lonely, happy or sad. As the ill, where else can I turn. As the parent or spouse watching their loved one suffer where else can you turn? As the child wondering who will take care of me next? What is there really left for us but Hope in Him. I can be angry and reject Him, but what have I gained by that.....If I can't hope in what He has promised......then what? Where does that leave me or those that I love? This HOPE that I speak of gives me peace that no doctor has ever provided. I pray that each of you reading this can agree. May God bless. Amos Moses 1 Fri, 07 Apr 2006 00:00:00 GMT Amos, I am so sorry to hear about your liver and all the problems that go along with it. I know it can be so sad and so frustrating. We are also worried that will happen to Jeffrey. Like you, that was our concern about the splenectomy. His spleen grew so big that we did not have a choice-like you. Jeffrey has been in the hospital a couple of times since I talked to you for fever and low anc. We hope he will graduate high school some time this year. He has so many hopes and dreams. Dr. L wants us to try an experimental drug-FTI if it ever gets approved. We've been waiting for over a year. I don't know if we should do it or not. I keep praying that we won't be accepted for the research if it is not God's will. There is just so much unknown things in all of this. I will certainly keep praying for you. Let me know how you are doing. I hate for anyone to have to deal with this. I'm thankful I found someone who understands. God is the only way I get through all of this, too. I know he loves me and mine very much and that everything will be worth it all in eterity. Betsy Mom of Teen Thu, 27 Apr 2006 00:00:00 GMT thank you for your recent response. I am sorry to have been so discouraging in my last note. I have learned in the most recent report from Dr. L that LGL has been divided into several different types depending upon various blood factors. It seems that the NK-cell LGL is the most agressive with the least positive outcome. This is also one of the less common ones praise God. Perhaps not your son's type. We have a friend whose son was DX with a very serious malignant brain tumor just one week before he was to graduate Valdictorian from our local high school. He spent his graduation in surgery and was still able to go to college the fall. Full ride scolarships. He was unable to complete 2nd semester for his second surgery and rounds of kemo and radiation. A few years now and he has had three surgerys and is still going to school when he can. The outlook for him is grim, but his Hope keeps him going with the attitude that he will need and use his college education. In the least, he is an inspiration to all who know and know of him. I am reminded that if I hust look around, there are others out there with it much worse than I. If you would like, I will ask if he would be willing to communicate with your son. I expect that he would if he is well enough at this time. Keep the faith. AM Amos Moses 1 Thu, 27 Apr 2006 00:00:00 GMT I didn't realize you had replied. I didn't get an e-mail about it. Thanks. I would love for your friend to write Jeffrey. That would be great. Thanks for thinking about him. We recently received a call from Dr. L's office. The experimental drug has finally been approved. Now,we're waiting to see if Jeffreys blood work will be accepted. We're praying that whatever God wants will happen. I just created a web site for Jeffrey at caringbridge.org. You might want to create one for yourself. I would enjoy reading about how you are doing. If you would like to read about Jeffrey and see his picture- go to www.caringbridge.org/visit/jeffreynichols I hope and pray you are doing better. Betsy Mom of Teen Fri, 26 May 2006 00:00:00 GMT Dear Mom of Teen, I read your postings and wondered what treatment your son is pursuing through Dr. L? Is is Zarnestra? If so, how is he doing? 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 Sorry, I haven't been online in awhile. Jeffrey has been on the drug you mentioned for one week. He is very,very tired-just lays around all the time. He also feels full all of the time so he eats very little. It's too early to tell if it is helping him. He was on methotrexate for 2 years. It helped at first but then it stopped. His anc on Mon. was 100. I hope you will feel better. Betsy Mom of Teen Tue, 25 Jul 2006 00:00:00 GMT Thanks, Betsy! I wish him all the luck as well. If you're interested, I found another, more active message more for LGL. Many of the individuals in that group are also patients of Dr. L (at one time or another). Here's the link: http://health.groups.yahoo.com/group/Large_Granular_Lymphocyte_Leukemia/ Again - I hope this Zarnestra is the one that finally works for your son. Ogeezer Fri, 04 Aug 2006 00:00:00 GMT Hi,Um I m vary sorry for you guys.I share your pain .To your soon I understand what he is going threw. but in my case I have AML I was diagnosed on 9/25/06 .I am only 17 my birth day is in two months and only god knows if i will make 18.I need all the information you can give me on this leukemia that is killing me . Flick_liz06 Sat, 30 Sep 2006 00:00:00 GMT My son is in the 4th month of treatment with Zarnestra. It doesn't seem like it is working. Dr. Loughran will make the decision next month if there is any need to continue. St. Jude will probably want to do a bone marrow transplant if we have to stop the Zarnestra. We are hoping and praying that there will be some improvement this month in his blood work. Betsy Mom of Teen Sun, 22 Oct 2006 00:00:00 GMT I don't know much about aml. Have you thought about going to St. Jude? You must be under 18 to get in so you would need to hurry. I wish you the best and pray for a quick recovery for you. I pray for your family also. Betsy Mom of Teen Sun, 22 Oct 2006 00:00:00 GMT Hi, I seen your message and would like to tell everyone about me, I have had lgl for 16 years and suffered much early on. I found that some alternitive doctor believe that most leukemia starts from fungus in the body. over two years ago I asked my doctor if herbs would help and his response was no, you will have this the rest of your life. So that just fired me up to search the web. to make a long story short I started taking a wonderful herb called olive leaf extract, it takes out fungus and does much more. this is what I am taking every day. A good multi- vitamin, 3000 mg of C timed released, CoQ10 200 mg and olive leaf extract 1500 mg. I also eat lots of geen salads, vegetables, and fruit. stay away from sugar, MSG, and processed food. I feel 100% better today and when I had my last visit with my doctor he was lost for words, said I was the most benign lgl patient he ever seen. God bless, longbow     longbow Tue, 04 Dec 2007 00:00:00 GMT I feel your frustration. It does seem that there are no good options for therapy. I also believe as you, It is god's will and I will fight with hope and faith. I pray to be led in the right direction. I am hearing many new LGL diagnosis, maybe this will lead to some new discoveries.Hang in there, god bless,   TJ tjteresa Mon, 04 Feb 2008 00:00:00 GMT