Latest Leukemia (CLL) discussions http://www.cancercompass.com/message-board/cancers/leukemia/leukemia-(cll)/1,0,119,7,50.htm Wed, 23 Jul 2008 00:00:00 GMT Wed, 23 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, Beginning new treatment and would like to know if anyone has had treatment with any of the following chemos, could you please advise what the outcome, side effects, etc. you've had. Phase 2 and is called "A Randomized, Open-Label, Multicenter, Phase 2 study to evaluate the safety and efficacy of Lumiliximab in combination with Fludarabine, Cyclophosphamide and Rituximab versus Fludarabine, Cyclophosphamide and Rituximab alone in subjects with Relapsed Chronic Lymphocytic Leukemia.Currently on Leukeran (oral) and doesn't seem to keep counts down.Any info. you have would be greatly appreciated. Thanks http://www.cancercompass.com/message-board/message/all,25558,0.htm ckdaniel Mon, 30 Jun 2008 00:00:00 GMT My husband has had CLL for four and a half years and is about to start his first chemo treatement with Leukerfan tablets.  Have any of you used these tablets?  I would appreciate any info you might be able to give us at this stressful time..  This is my first messgage and would love to hear from anyone in similar circumstances.  As I am sure you all know, it is an unsettling, scary time and any correspondence would be much appreciated!!! http://www.cancercompass.com/message-board/message/all,24834,0.htm mazzie Mon, 09 Jun 2008 00:00:00 GMT my spouse is newly diagnosed with CLL. Devastating news as he has been healthy & active all his life. His white count has gone to 45000 from 35000 since diagnosis last November. Now I know this is not high in leukemia terms but answers from the doctor are not forthcoming. His comment is "you are fine see you in 4 months". Can anyone tell us at what level treatment is usually started or is there a set number. My spouse had a cold with sore throat when last blood work was done. would that have affected his count?Also wondering about Vitamin D & C heard they can be helpfulWe are new to this, worried & in need of lots of answers. any help is greatly appreciated. http://www.cancercompass.com/message-board/message/all,24785,0.htm GCMMDJ Sat, 07 Jun 2008 00:00:00 GMT HiMy mum has been diagnosed with CLL two days ago.The doctors says she is still in the early stages of it. Her red blood count is still high and but lymph node are swollen. She does not feel any pain just fatigue. He has decided that it is still to early to treat her and has sergested that she eat healthy to build her immune system and blood count up. I have got her vitamin C tablets and Aloevera tabs as well as Prozen wich is a natural tablet to assist with stress etc.I need to find out what diet do other CLL suferers follow. If any one can get back to on this I would really appreciate it. GOD Bless you all and nothing is impossible for God. http://www.cancercompass.com/message-board/message/all,24701,0.htm Cherdoo Thu, 05 Jun 2008 00:00:00 GMT HiMy mum has been diagnosed with CLL two days ago.The doctors says she is still in the early stages of it. Her red blood count is still high and but lymph node are swollen. She does not feel any pain just fatigue. He has decided that it is still to early to treat her and has sergested that she eat healthy to build her immune system and blood count up. I have got her vitamin C tablets and Aloevera tabs as well as Prozen wich is a natural tablet to assist with stress etc.I need to find out what diet do other CLL suferers follow. If any one can get back to on this I would really appreciate it. GOD Bless you all and nothing is impossible for God.  http://www.cancercompass.com/message-board/message/all,24700,0.htm Cherdoo Thu, 05 Jun 2008 00:00:00 GMT Hi there, my name is Gail, and my son who is 21 has just been diagnost with lgl leukemia, they (the doc's) say it is the better varaint of the type that he has. We just three weeks in the hospital, 2 to find out what was going on and one  to figure out what type and what treatment. So now he is home and on a once a week chemo pill and a steriod and pain meds.we have to get his blood drawin once a week, for 4 wks, then drive back to San Francisco to see his doc there. In the mean time i am told that he is very suseptible to getting sick because of the immune system being so week. I AM SCARED, and God only knows how he is feeling inside. This came out of nowhere. My son has already survived a gun shot wound to the chest when he was 13. now he is hit with this. I was hoping to get some insight on what to expect in the weeks to come and what his future holds for him with this disease. Any information you have to share is greatly appreciated as we are just starting learn and absorb this. Thank you all and God Bless each and all. http://www.cancercompass.com/message-board/message/all,21700,0.htm worriedsickmother Wed, 05 Mar 2008 00:00:00 GMT Hello.  My husband was diagnosed with CLL some time in March 07.  He also has type 2 diabetes (diagnosed about 5 years ago) and Hepatitis C.  Currently his is under no treatment for the CLL, but is taking meds to treat the Hep C and his diabetes.  He is having a tough time dealing, emotionally, spiritually and physically with all these health issues and their individual complications.  Recently, he has had to deal with intense itching all over his body (even his scalp) that the doctor diagnosed as hives but could not really say where they might be coming from.  Anyone here dealing with hives due to CLL?  If so, would love to know how you are dealing with it to help my husband cope.  Thanks in advance.    http://www.cancercompass.com/message-board/message/all,19410,0.htm Jonez Sat, 05 Jan 2008 00:00:00 GMT what was it about my previous message that cause people to ignore it? http://www.cancercompass.com/message-board/message/all,17235,0.htm megjobethamy Fri, 19 Oct 2007 00:00:00 GMT My brother has CLL.  His situation was monitored for approx. 4 years, but when his red blood cell count went down, while his white cell count was going sky-high, he began chemo.  He was told it would be 2-6 months of chemo and then they'd see what happens.  He responded well to chemo, having it 3 days/month for the last 4 months.  The only side effect has been a sensitivity to cold right after the treatment.Now his dr. is proposing a bone marrow treatment (no outside doner being used), but the possible effects sound frightening, compared to the virtually no effect he's had with the chemo.  It's being presented to him as elective, and that his PPO will cover it (we haven't heard from the insurance co. yet.).  Is there anyone out there that regrets doing the bone marrow transplant?  Are there people out there who feel it saved their lives?  If he says no to this treatment, can he just continue with the chemo and still get better?   Anything you can share in the way of "real life" situations will be very appreciated.  I really love my brother.  thanks http://www.cancercompass.com/message-board/message/all,16498,0.htm megjobethamy Tue, 25 Sep 2007 00:00:00 GMT My brother has CLL.  His situation was monitored for approx. 4 years, but when his red blood cell count went down, while his white cell count was going sky-high, he began chemo.  He was told it would be 2-6 months of chemo and then they'd see what happens.  He responded well to chemo, having it 3 days/month for the last 4 months.  The only side effect has been a sensitivity to cold right after the treatment.Now his dr. is proposing a bone marrow treatment (no outside doner being used), but the possible effects sound frightening, compared to the virtually no effect he's had with the chemo.  It's being presented to him as elective, and that his PPO will cover it (we haven't heard from the insurance co. yet.).  Is there anyone out there that regrets doing the bone marrow transplant?  Are there people out there who feel it saved their lives?  If he says no to this treatment, can he just continue with the chemo and still get better?   Anything you can share in the way of "real life" situations will be very appreciated.  I really love my brother.  thanks  http://www.cancercompass.com/message-board/message/all,16496,0.htm megjobethamy Tue, 25 Sep 2007 00:00:00 GMT Earlier this year (March) I was diagnosed with CLL the day before my 43rd birthday.  Happy Birthday to me!!  Needless to say I was devistated. I've always been in excellent heath, except for the past few years. I immediatley got online and starting reading everything I could on Luekemia.  WOW, a whole new world. The first thing I did was got a second opinion. (same outcome)  Then I had to make a choice on a doctor in my area.  I chose.."The James".  Ohio State University.  (The Arthur B. James Cancer Center)  So far I've been pleased. According to my team of doctors I''m in the early stage, aka "the watch & wait".  I dont know what to do... I'm still in shock.  I find myself looking in the mirror saying to myself outloud.... YOU'VE GOT CANCER!    Its like this is happening to someone else.. it cant be me.  Then I remember it is me!! The doctors tell me that I will have to have chemo at some point, they just dont know when.  Right now I got every 3 months for blood work.  In the meantime the watch & wait is killing me.  I have decided to get my body, mind, and spirit ready.  I need help.. I hear a lot about vitamins, diets  and building my immune system.. I would love to hear from others with this illness...any thoughts , ideas, or suggestions?? CeCe http://www.cancercompass.com/message-board/message/all,16271,0.htm ItsMyTime.... Tue, 18 Sep 2007 00:00:00 GMT Has anyone else read this on the net?  I was wondering if anyone is using hot pepper nasal spray as part of  their leukemia treatment.  Does it work?  http://www.cancercompass.com/message-board/message/all,16258,0.htm worriedforthem Tue, 18 Sep 2007 00:00:00 GMT I've just been advised to have my leukemia (CLL) treated using "Retuxin" once a week for four weeks.  My doctor says it is to reduce the anemia I have developed as a result of the high white blood cell count.  Has anyone been treated with this "Retuxin" and, if so, have there been any side effects I should consider? http://www.cancercompass.com/message-board/message/all,15520,0.htm Charlie P Wed, 22 Aug 2007 00:00:00 GMT Hi has anyone out there been treated with alternative therapys for cll.I live in Australia & was thinking of going to Mexico to the Hoxsey clinic as i have not sterted chemo yet & would like to try alternative first.Thanks Zamba http://www.cancercompass.com/message-board/message/all,14873,0.htm zamba Tue, 31 Jul 2007 00:00:00 GMT My dad is 79 and was just diagonized with CLL and I am sick to my stomach. I live in Florida and he lives in NYC and I wish as an only child I could drop everything and go be with him. My mom is elderly too and she is the only person with him. He is getting ready to do 4 CT Scans. He believes his lymph nodes are enlarged. Other than that he has no other symptoms that he can tell. He only found out something was wrong when he had a CBC and his white blood cells were higher than normal. http://www.cancercompass.com/message-board/message/all,12027,0.htm Dolores2318 Sun, 13 May 2007 00:00:00 GMT My husband is experiencing central vision blindness after receiving Fludara. This is his second time with chemo - first time in 2004 for lymphoma. No one can find out why he is losing vision. Didnt know if anyone out there has heard of a similar reaction. http://www.cancercompass.com/message-board/message/all,11882,0.htm Wyomingdale Sun, 06 May 2007 00:00:00 GMT I have had CLL for about 7 years, my white count is now up to 112,000, the Dr. wants to start treatment in 3 months when I go back in April. I am deciding whether or not to go to Dr. Loughren in State College, PA for a second opinion.  My family thinks that I should.  Anyone else have treatment before the count got that high, and what kind of treatment, the Dr. recommend chemo about once a month for 6 months. I am concerned about this treatment.  Any one else out there that could give me some direction as to when and how this affected them if they had any treatments???Bonnie3 http://www.cancercompass.com/message-board/message/all,9241,0.htm Bonnie3 Tue, 30 Jan 2007 00:00:00 GMT Prospective, randomized trial of the DiSC Assay (chemosensitivity testing) in chronic lymphocytic leukemia (CLL) on response rate and survival. The first prospective, randomized trial of the DiSC Assay (cell-death endpoint) is currently taking place in the United Kingdom (UK). It is part of a large trial in which 750 newly-diagnosed patients are being enrolled. The first goal of the study is simply a very traditional three-arm trial to compare three different forms of empiric chemotherapy in newly-diagnosed CLL. Patients are randomized to treatment with chlorambucil (Untreated Arm I), Fludarabine (Untreated Arm II), or Fludarabine + Cyclophosphamide (Untreated Arm III). Most CLL patients ultimately relapse (or have primary refractory disease) following first line therapy. Relapsing/refractory patients are then re-randomized to receive either DiSC Assay-directed chemotherapy (Refractory/Relapsed Arm I) or "standard," empiric therapy (Refractory/Relapsed Arm II). Study details are described on the following web site and are excerpted below: http://www.clinicaltrials.gov/ct/sho...004218?order=1 Official Title: Phase III Randomized Study of Chlorambucil Alone Versus Fludarabine With or Without Cyclophosphamide in Patients With Newly Diagnosed Chronic Lymphocytic Leukemia Study chair/Principal investigator Daniel Catovsky, MD, Study Chair, Royal Marsden NHS Trust Sponsored by Leukemia Research Fund Medical Research Council Further Study Details: OBJECTIVES: Compare the survival rate of patients with newly diagnosed chronic lymphocytic leukemia treated with chlorambucil alone vs fludarabine with or without cyclophosphamide. Compare the response rate and duration of remission in patients treated with these regimens. Compare the toxic effects of these regimens in these patients. Compare the quality of life of patients treated with these regimens. Determine the impact of the drug response information provided by the DiSC assay on response rate and survival in relapsed or nonresponding patients. Assess the prognostic value of five genetic markers: trisomy 12 and deletions at 11q23, 13q14, p53, and 6q21 in patients treated with these regimens. OUTLINE: This is a randomized study. Patients enter one of three treatment arms in the first randomization.Depending on response, some patients may also participate in a second randomization to one of two treatment arms. Untreated Arm I: Patients receive oral chlorambucil daily for 7 days. Treatment repeats every 4 weeks until maximum response or up to 1 year. Untreated Arm II: Patients receive fludarabine IV or orally daily for 5 days. Treatment repeats every 4 weeks for 3-8 courses. Untreated Arm III: Patients receive cyclophosphamide IV and fludarabine IV for 3 days or orally daily for 5 days. Treatment repeats every 4 weeks for 3-8 courses. Patients who relapse after being in remission for at least 1 year may repeat the initial therapy or may participate in a second randomization. Patients who experience progressive disease or relapse within 1 year after treatment proceed to a second randomization. Relapsed/Refractory Arm I: Treatment is guided by the results of the DiSC assay. Treatment may be one of the first-line treatments with fludarabine or standard CHOP chemotherapy repeated every 4 weeks (cyclophosphamide IV, doxorubicin IV, vincristine IV, and oral prednisolone on days 1-5) or any other therapy guided by the results of the DiSC assay. Relapsed/Refractory Arm II: Treatment is physician's choice, which may include any of the options in arm I. Quality of life is assessed prior to initial therapy; at 3, 6, and 12 months; and then annually thereafter. Patients are followed annually for survival. PROJECTED ACCRUAL: A total of 750 patients will be accrued for this study within 6-7 years. http://www.cancercompass.com/message-board/message/all,7546,0.htm Gdpawel Wed, 01 Nov 2006 00:00:00 GMT Hello,my name is terri. My dr. Just told me i have et on 08/17/2006. I am a little confused with the infomation. Does anyone out there know is this a form of cancer. The more i read the more confused i get.my numbers have been as low as 447 and as high as 971. I take a baby asprin a day for now. I have had one blood clot after an ablation on my heart and i was convinced it was from that. But i was told it was in my blood. My sister keeps asking me question on it and i do not know how to answer her. Also i was just told i was positive for the jak2 gene. Does it run it the family. Help me someone. I am very confused and frightened to say the least. I would appreciate any info, go figure i am in the medical field and heve been for 24 years and i do not get this one. Thanks again for the support. Terri http://www.cancercompass.com/message-board/message/all,6855,0.htm Terrilynn Tue, 12 Sep 2006 00:00:00 GMT Is anyone out there in the area of St. Augustine, Florida. If so e-mail me. --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Thanks http://www.cancercompass.com/message-board/message/all,4388,0.htm Subnut Sun, 05 Feb 2006 00:00:00 GMT I was shocked when recently diagnosed with CLL. I just turned 60, have grandkids close by and a fabulous husband. My life has been perfect. I zoned out when I received the diagnosis and have gone from depression to anger -- why me! Are these normal reactions? I think I am getting a grip, but still have my moments. Also, is there some diet plan and/or vitamin regime I should be following? I am in stage one with monthly blood testing and a watch only treatment at this time. Does this sound right to everyone? Any tips for beating fatigue? Also, how do I tell my family? Any advice will be greatly appreciated. http://www.cancercompass.com/message-board/message/all,3839,0.htm Johnalynn Tue, 27 Dec 2005 00:00:00 GMT My husband is 39 yrs. old and in Feb. of this year was newly diagnosed with CLL. We were floored. Like alot of you we have 3 children and when we found out I felt numb all over. He has never been sick and has only went to the Dr. 3 times in the past 11 yrs., usually for a cold. Thanks to God one night he had bad pains in his left side and we went to the ER. They drew blood and we found out. We are at the end of chemo now and his brother is a match. I thank God for people like you who share your lifes with us. We are praying for you and your families. I thank God for the pain in his side- the Dr. said if we had been a week later it would have been to late. I would love to hear from anyone- and any advice you might have would be greatly appreciated. God Bless you all, KIM http://www.cancercompass.com/message-board/message/all,2402,0.htm Jeffery Tue, 05 Jul 2005 00:00:00 GMT I was recently diagnosed with CLL and was told by my Dr. that I am ZAP-70 positive. My only understanding of ZAP-70 is that it may indicate aggression in the disease. I would be curious if anyone else has a greater understanding or has discussed this particular protein with their Dr. Any information will be greatly appreciated. Thanks and good health to all of you. http://www.cancercompass.com/message-board/message/all,2181,0.htm Illinois Papa Wed, 01 Jun 2005 00:00:00 GMT I am in stage 4 CLL and refused chemo as i am keeing my lymphocytes in the 30s with diet and herbs. My problem is my platelets keep getting lower. Does anyone have that problem? http://www.cancercompass.com/message-board/message/all,2144,0.htm Twosteprav Thu, 26 May 2005 00:00:00 GMT I have always had low platelets and the doctors never said a word until I was diagnosed with CLL then it has become an excuse to put me in stage 4 and try to give me Fludarbine. My red cells are perfect and my white cells have stayed the same for a year. I have no infections, bleeding, or fevers. With many other medical problems I have much more too loose than gain from Fludarbine. I don't trust doctors any more. Does anyone have any suggestions? http://www.cancercompass.com/message-board/message/all,1904,0.htm Twosteprav Sun, 17 Apr 2005 00:00:00 GMT