Find the support and resources you're looking for about at our online ALL/leukemia forum. Join CancerCompass.com to compare notes about treatment methods, cancer research and more. http://www.cancercompass.com/message-board/cancers/leukemia/leukemia-(all)/1,0,119,7,48.htm Tue, 24 Nov 2009 00:00:00 GMT Tue, 24 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi!!My name is Kenneth from Sweden!!Have you heard about Ceplene against AML??  If not, go to the webbsite and read about Ceplene and Named Patient Program:http://www.epicept.com/ Ceplene had previously been granted orphan drug status for the treatment of AML by the European Medicines Agency (EMEA) and the US Food and Drug Administration (FDA).Ceplene was approved by EMEA in october 2008Sincerly with respect Kenneth T. http://www.cancercompass.com/message-board/message/all,40195,0.htm Kenta96 Sun, 27 Sep 2009 00:00:00 GMT My mother 69 year old has been diagnosed as Acute Lymphoblastic Leukemia (  ALL - L3)  in April 09 on the basis of repeat bone marrow. Morphology of blasts is typical burkitts leukemia although flowcytometry for surface Ig was negative and conventioal cytogenetics was normal. CD 20 was negative. Chemotheropy with Huper -CVAD protocol was started and her bone marrow after induction therapy Course A is in complete remission.. Course B of  Hyper CVAD is also completed and so for 5 cycles of chemo is done.. Her present health condition is stable as per oncologist. She is not having any other complication like high blood pressure, sugar etc.After each chemo she feels sick but recovers after 4 to 5 days.During this period, blood  and platilets are induced to keep her blood counts normal. She has lost almost 10 kg since april'09.Is there any hope of complete cure of this diesese ??thanks http://www.cancercompass.com/message-board/message/all,39629,0.htm PRANESH Sun, 06 Sep 2009 00:00:00 GMT my freinds son has leukemia fortunately in remission!!! but is has a prt cathetor implant and they are always worried when he plays he is gonna damage it is there any type of protection for the device so the kid can be a kid? http://www.cancercompass.com/message-board/message/all,37998,0.htm GRATEFULL Sun, 12 Jul 2009 00:00:00 GMT HelloMy mom has luekemia and they are giving her Relimid since April 2009, the med. is working ok but when my mom takes it for more then 3 weeks she breaks out in a horrible rash and itching from head to toe and she has to stop take medication till it clears which can take another 3 weeks. Her doctor tells her to take Benadryl 4xs a day and he did prescribe an anti-itch cream but they really don't help.  Any suggestion would be appreciated.  Thank you concern daughter http://www.cancercompass.com/message-board/message/all,37721,0.htm gabriela34 Fri, 03 Jul 2009 00:00:00 GMT Years ago I had kidney cancer and lost my kidney, I am a survivor. Now for the past eighteen years I have had severe anemia, to the point that for nine months I have had procrit shots weekly and am now on IV therapy, I  have had six blood transfusions with iron and I am still considered a nemic. My last count was iron 27 white cell count is better at l2.5 it had been up to 35 a month ago. My hgb is now ll my hct is 34 my eos is 8.9  I am concerned that maybe I am headed towards a more serious blood disorder.  Has any one had this problem.  I should also add i also had my thryroid removed as it had three large tumors on it. This was done three months ago and the tumors were benign and lymph nodes favored for benign/ Any thoughts. Chuck 1 http://www.cancercompass.com/message-board/message/all,37066,0.htm chuck1 Thu, 11 Jun 2009 00:00:00 GMT A friend has Primary Schlerosing Cholangtis (PSG) and his white blood count is so low he can no longer take treatments.   What drugs/foods/vitamins can he take that will boost his white blood count? http://www.cancercompass.com/message-board/message/all,37004,0.htm bancroft Wed, 10 Jun 2009 00:00:00 GMT I was diagnosed in November of 2008. Since then I have been on three medications as well as being in and out of the hospital three times. I am 28 years old and engaged to be married in the fall. I am currently on Pegasys and doing very well. I get the injection once a week and continue to stay on a managed dose of Anagrelide. This from what I have been told is the 2013 Standard Care of Treatment, "Pegasys" though it does have significant side effects in its printed literature and studies, it does prove to be effective and the side effects are minimal. This medication is safe to have children on and does not have any long term side effects as Hydrea does. I hope this helps as everyone is trying to determine the best medication for them.  DM http://www.cancercompass.com/message-board/message/all,35712,0.htm Melissa14 Wed, 29 Apr 2009 00:00:00 GMT My daughter is in ALL maintenance and has stopped taking monthly vincristine due to vocal cord paralysis.We are concerned it will affect the effectiveness of her treatment ... have others successfully dropped vincristine for the duration of maintenance?Was vincristine substituted with another drug?Any responses/suggestions would be helpful. http://www.cancercompass.com/message-board/message/all,35470,0.htm MUSSAL Tue, 21 Apr 2009 00:00:00 GMT I read some of the messages from some of the people with the same type of Leukemia as my husband has.  He is 59 and has been ill since 2003,He was first diagnoised with rocky mountain spotted tick fever which triggered Rheumotoid artharitis It has been 5 yrs of fatigue, infections. low lymphocites and neutrifils fevers chills ect.  At first they treated him with methotrexate and then when his blood count dropped, neupergen shots were added. they worked well at first only requiring shots about every 3 or 4 months but as time went on we were down to shots every week or so. His condition was getting much worse.  Our Hemotolagist reccommended that we go to Mayo Clinic for further testing , he had a pretty good idea of what was going on.  but we were unable to get a correct diag. where we lived.  In Sept.2008 we traveled from arkansas to mennsota to Mayo Clinic.  It was the best decision we ever made.  It took 24 hours for them to confirm the diag. of T-Cell Large Granular Lymphocytic Leukemia (very rare)  even for a place like mayo.  It was suggested that it be treated with methotrexate and cyclosporine.  It has now been almost 6 months and our Doctor chose to treat him only with the cyclosporine.  After a month on the medicine his blood work was better than it had been for 5 yrs.  No infections,much more energy,  Our Blood work today 1-29-09 was all normal.  We know there is no cure, but god has blessed us with some breathing room.  We are looking forward to camping and fishing season.   Would like to hear from other simular cases.   God Bless !!                   w http://www.cancercompass.com/message-board/message/all,32673,0.htm bob2bill Thu, 29 Jan 2009 00:00:00 GMT I have a 25 year old daughter who has ALL leukemia that we just found out about on Dec. 30,2008. She is in North Florida Regional Hospital and the financial burden is very hard, but the thought of this cancer taking her body down like this is horrible. She has an almost 3 year old son that doesn't understand and it breaks my heart to see him look at his mom and wonder why she can't come home. We are doing every thing we can to support her but its hard especially when I had to take a leave of absence from work to care for her son and her father, who I am no longer with, doesn't seem to think he should care about her. Her sons father has never even come up to the hospital and he doesn't think he should take his son to help raise him. We do have all our faith in God that she will come home soon and healthy . We need all the prayers we can get from any one and everyone out there. Thank You and God Bless, Debbie http://www.cancercompass.com/message-board/message/all,32034,0.htm azebra Sun, 11 Jan 2009 00:00:00 GMT My 5 year old son has ALL and is on his second round of maintenance and decadron has had the most pronounced and worst side effects of any drug he has been given.  The worst of which are the psychological effects, he is on decadron 5 days per month.  He is edgy and moody while he's on it, but the worst is the withdrawal days 10-12 being the absolute worst, he seems to have a more sever reaction than do other children.  What he exeriences is considered decadron psychosis.  There have been times where if he were an adult I'd take him to the mental hospital for observation/evaluation.  He goes crazy, screaming bloody murder/crying uncontrollably (for no apparent reason), throwing, kicking and breaking things.  The days are predictable, but what or when during the day will unleash the decadron monster is totally unpredictable, nothing at all can set off an 'episode'.   He was given ativan, started with .25 mg as needed and went as high as .75 mg up to every six hours on the bad days.  This seems to do very little, it does not bring him out of an episode, it makes him a little glassy eyed and wierd.  I'm thinking he's feeling a little high as people have described feeling.  So then he's wierd on top of everything else.  So, this past month he was given potassium for 9 days beginning on day 1 of the decadron regimine.  This seemed to keep him calmer and his moods more even while he was taking the decadron, not 100% calm or even tempered, but improved.  Days 10-12 saw a slight improvement, but this is still not where he needs to be.  We really need to get him in school and not have to be in lock down in our house for half the month.  Has anyone had a similar experience and what if anything worked to help.  He sees a play therapist and she suggested some alternative therapies to help him calm himself, like Rieki (sp?) or yoga.  I am open to these things at the very least it could help him recover from the trauma of the episodes once they are over.   He has 27 more months remaining in maintence.  If I have to endure this 27 more times, I might go crazy, it is very stressful.   http://www.cancercompass.com/message-board/message/all,31778,0.htm GiovannisMommi Sat, 03 Jan 2009 00:00:00 GMT Hi,I just came upon this site while researching any updated information on ET.  I was diagnosed in 1989.  What a scary time because I had just remarried a year before.  I was originally put on hydrea.  I was on it for years and my platelet count fluctuated all the time.  The Dr either increased or decreased my meds everytime I went for a visit.  Then my husband and I decided to retire in TN in 2005 so of course I had to get a new Dr.  He was surprised I was still on Hydrea since agrylin  is specifically for this condition.  Since he put me on the agrylin my count has been between 300,000 and 350,000 consistently.  I feel great also.  I feel very lucky to have gone this long (almost 20 years) without any real problems.I'd like to hear from other long-time ET people http://www.cancercompass.com/message-board/message/all,30963,0.htm NadineR Sat, 06 Dec 2008 00:00:00 GMT These were the bloodwork results my father a 58 year-old Hispanic man. The were run a second time because the first time they found some levels elevated and these were the 2nd time results. His primary doctor says he wants to put him in another 4 week plan with eating lots of iron, injections weekly and some pils. HEMATOLOGY WBC  11.2 HRBC 4.29 LHGB 12.8 LHCT 37.7 LMCHC 34.1 HNEUT. ABS # 6.70 HLYMPHOCYTES 19.80 LEOSINOPHILS 10.2 LEOS. ABS # 1.2 H CHEMISTRY B/C RATIO 10.9 LPlease let me know. Thanks! http://www.cancercompass.com/message-board/message/all,30200,0.htm ivanglo Wed, 12 Nov 2008 00:00:00 GMT Hi, my name is nuvia and i was diagnost with (all) on march of 2006 and thank god after the first quimoterapy i was in a full remission. But i still recived 4 courses more of quimos. I finish  the treatment on july of 2006.but i am in gleveec since the first quimo and my doctor told me that is my best friend from now and on because i am (ph) possitive.that mean i have the philadelphia chromosome and i have to take gleveec for the rest of my live if i want to have a better chance to stay in remission.I take 600mlg a day and i rather take it at night time .because i notice. The fuller your stomach is the less side effecs you get.If some one out there is a all survivor please email me  i will like to know what are the chances to have a normal child if you become pregnant  http://www.cancercompass.com/message-board/message/all,29270,0.htm LUCKY_NUVIA Mon, 13 Oct 2008 00:00:00 GMT Hello from another childhood ALL survivor!  (right now my major role is as caregiver to my parents so I selected that avatar - Dad has cholangiocarcinoma and my Mom has bone cancer) but I am a survivor too!!!  I think that fact also encourages my parents!  I was diagnosed when I was 13 and went through about 3 years of chemo including 10 rounds of cranial radiation.  We were fortunate that the doctor that found my cancer was aware of St Jude.  I started there in April of 1985.  I am happy to say that I have been a survivor for 23 years!!My mom is actually a 25 year survivor - she was diagnosed with breast cancer in 1983 and had a radical masectomy.  Her bone cancer was found just over a year ago in January of 2007.  Dad's diagnosis happened in February of this year.  I'm on only child, so my immediate family is 3 for 3.  But we are all surviving!!I would be happy to share any of my experiences with anyone.  It seems like I've been around cancer now for most of my life... http://www.cancercompass.com/message-board/message/all,26226,0.htm DWsLittleGirl Fri, 18 Jul 2008 00:00:00 GMT Hello, We lost a love one to cancer in January of this year.  We purchased a wig for her and she only got to put it on for two hours before she got very sick and had to go to the hospital, where she died 10 days latter.  The wig is red hair, not real hair but very good quality and it was professionally styled.  We are sure that she would like to donate it to someone suffering from cancer like her.  Please contact us if you know of someone in need of a wig. Thank you http://www.cancercompass.com/message-board/message/all,26160,0.htm Alvs2u Thu, 17 Jul 2008 00:00:00 GMT Hi my mother was diagnosed cml leukemia the end of 2006 she received her chemo and remained very strong through out her treatment.  Then she was placed on gleevac for maintenance.  Well we mad it to the 1 yr. repot all was looking great and then 1 month later she became ill.  We though she had the flu and it turned out cancer returned although this time it is all with the phylidelphia chromosone.  untreated she had a few weeks to live and treated a few months.  She went and had visctistine which i was told is a form of chemo(not exactly sure).  While in the hospital she had a awful time with her bowls not functioning due to the meds.  She was in the hospital a couple of months and since she has be home they same her blood count is good, although every day she is sick, she cannot eat anything. Violently throughing up. She is unable to go out of the house walk or even get to her bed since it is upstairs.  She is in and out of hospitals weekly due to this problem they have tried several meds nothing is helping.  Iam so confused i don't know if it's the cancer or something else.  When i ask the nurses and doc they say they don't know.  Has anyone ever had or knew someone experiencing this? http://www.cancercompass.com/message-board/message/all,24728,0.htm tyneshalee Thu, 05 Jun 2008 00:00:00 GMT My husband was recently diagnosed with ALL at the age of 32.  He has been through his first round of chemo and is doing very well so far.  He is tough, they caught it extremely early and I truly believe that he is going to get through this.  In the meantime, I'm very worried about myself.  I'm an emotional mess and every attempt I've made to try to find professional help has turned into a debacle of epic proportions.  I'm tired and angry that my life has been completely put on hold.  I worry about him constantly and can't sleep.  Is there anyone else out there that is going through this that can relate?  My family and friends are very supportive (most of whom live far away), but if one more person tells me to be strong for him, I might have to strangle them.  I'm just looking for any advice to help me get through this so I can give him what he needs to fight this disease. Thanks http://www.cancercompass.com/message-board/message/all,23945,0.htm AngelaH Mon, 12 May 2008 00:00:00 GMT Is anyone here experiencing bruising, pallor, fatigue, potentially due to short or long term exposure to adhd drugs? Have you been diagnosed with itp, aplastic anemia, leukemia as a result? If so, I would love to speak with you, please email me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Blessings,anita http://www.cancercompass.com/message-board/message/all,22578,0.htm adhddrugatrocity Tue, 01 Apr 2008 00:00:00 GMT My sister (49) was diagnosed with ALL Aug. of 07. She is on her 7th round of chemo. She had severe reactions to Vincristine and L-aspariginase. The chemo effected all her internal organs. She has had a severe fungal infection in her lung for the last 7 months. She goes into the hospital every day for intervenous fungal medicines which have not helped. She had part of her lung removed to remove a big dead area that was destroyed by the fungus. When the surgeon opened her lung he found that the fungus was not just contained in the dead area as they thought, but had spread throughout her lung and in fact had blown 4 holes in her lung. They tried to patch her lung with her own flesh, but now that she had her next round of chemo, the patches blew off. Her doctor is planning a stem cell transplant in the very near future, however the medicine that she needs for the transplant is something that the fungus loves and thrives on. They told her that she is very high risk. She is very nervous. My question would be, has anyone successfully treated a fungal infection and if so, how. Thank you in advance for taking the time to read this and answer my question. Lynn http://www.cancercompass.com/message-board/message/all,22489,0.htm Lynnje Sat, 29 Mar 2008 00:00:00 GMT Hi everyone,My friend and I are putting together an event that will be taking place at the Children's Hospital Los Angeles on Saturday May 17th 9am-1pm in honor of her daughter (Hailey Kent) who was diagnosed with ALL at 3 months old and received her life saving transplant last May. The event is more like 3 events rolled into one - there will be a Blood Drive (blood will be going to children in need at the CHLA) and a Bone Marrow Registry Drive (with the National Marrow Donor Program) and a Celebrity Autograph Signing Session. If you live in the LA area or will be visiting the LA area please stop by and consider donating blood or registering to donate marrow.Because of the type of forum this is, most of you have probably been deeply affected by someone you love needing blood transfusions or a bone marrow transplant. This could be your chance to helps others in similar circumstanes!If you can't make it, you can still help and make a very positive difference ~ pass this around to all those you know and especially those in the LA area. The more people that come to the event the more lives that could be saved!For more info on the event or how to help, please visit our forum: http://s9.invisionfree.com/Hope_For_Hailey/ I'm sure you all already know the major needs and benefits there are to donating blood or marrow, but I will post this anyway.10 REASONS TO DONATE BLOOD OR REGISTER TO DONATE BONE MARROW*Donating Blood and Marrow may be two different things but they both have one goal: TO SAVE LIVES*1. Someone needs blood every two seconds2. Every year, thousands of adults and children need bone marrow transplants -- a procedure which may be their only chance for survival. Only 3 out of every 10 people that need bone marrow actually get a match. Those that do not get a match inevitably die3. More than 4.5 million patients need blood transfusions each year in the U.S. and Canada.4. Only 30% of patients find their bone marrow match through a sibling, while the other 70% have to look out side their family for a life saving match. 5. One pint of blood can save up to three lives.6. During a Bone Marrow Transplant donors feel no needle injections and no pain during marrow donation because general or regional anesthesia is always used for this procedure.7. Children being treated for cancer, premature infants and children having heart surgery need blood and platelets from donors of all types, especially type O.8. Many patients, especially those from minority groups, cannot find a compatible bone marrow donor among those on the registry. 9. A patient could be forced to pass up a lifesaving organ, if compatible blood is not available to support the transplant.10. YOU can save a life! http://www.cancercompass.com/message-board/message/all,22413,0.htm Cindy5678 Thu, 27 Mar 2008 00:00:00 GMT Recently diagnosed with CMML. I live in Australia, and have been told there is no treatment, and just to "watch and wait" Has anyone else been in this situation? I am also told it is aggressive, and terminal!... but that I may have 4-6 years symptom free... doesn't really sound agressive, does it? http://www.cancercompass.com/message-board/message/all,21658,0.htm wendyv Wed, 05 Mar 2008 00:00:00 GMT Searching for a living CMML patient.... would love to talk. I've been recently diagnosed, and told no treatment is available.I live in Australia http://www.cancercompass.com/message-board/message/all,21620,0.htm wendyv Tue, 04 Mar 2008 00:00:00 GMT I am posting this on behalf of my good friends, the Kents. Their infant daughter, Hailey, was diagnosed with Acute Lymphocytic Leukemia (to be exact and even rarer, MLL) when she was just 3 months old. Since then, she has had to endure many many months in the hospital, various procedures, countless blood transfusions, and a stem cell transplant. Right now, at about 21 months old, Hailey is fighting a potentially deadly case of Graft Versus Host Disease.Myself and some other friends of the Kents are trying to get Extreme Makeover:Home Edition to build the Kents a new home. Although, incredibly blessed to receive the transplant, it has left Hailey's immune system virtually non-existent. She now has no defense against germs, viruses, or bacteria... all of which live in everyone's home. One little cold could potentially kill her. The Kents currently rent their house, and besides the fact that they can not afford a HEPA filter to help filter out these potentially deadly things, they were recently told that they couldn't install one. Sunlight is also very bad for Hailey's GVH Disease, and with little room to move around in her house and sunlight streaming through its making her condition even worse (the windows are low to the ground and Hailey and her twin like to pull blinds and shades down). In November, their contract for the house will be up and they need to decide if they are going to stay (if they can even afford to still live there) or find a new house. They spent most of their life savings on trying to have children and were finally blessed with Hailey and her twin brother Ryan (although they suffered 9 miscarriages in the process). So between that and trying to pay off Hailey's astronomical medical bills they don't have any money left for a house. Through all of this Maria has remained steadfast that her daughter will get better and has made it her mission to help other patients and parents of children with cancer get the help they need. She is passionate about trying to convince the Leukemia and Lymphoma Society to do research on MLL (its apparently so rare that they haven't done much, if any, research on it). She's helped put together several Bone Marrow Registry Drives and Blood Drives and is working on a fundraising event and Blood & Bone Marrow Drive for the Children's Hospital Los Angeles and the National Marrow Donor Program. Her efforts have already and could potentially save so many lives! This is a true testiment to what an amazing family this is!So, I totally just rambled...but to make a long story short... I was wondering if you all could please help us spread the word about what a deserving family this is and how badly they need a new house. Please pass it on to everyone you know....friends, family, coworkers, acquaintances. Even email Newspapers or News stations. Post it on forums or messages boards. Just please help us get the word out there.We are not asking for money. We just want to help a deserving family get a home that is healthy and safe for their very sick little girl. And we're hoping to accomplish that with some word of mouth.Please check out this video in honor of Hailey:http://www.youtube.com/watch?v=b8uFL_sqD3Y Here is our website: http://hopeforhailey.tripod.com/ *There is also a petition for you all to sign on there as wellThanks for taking the time to read this :)Cindy http://www.cancercompass.com/message-board/message/all,21580,0.htm Cindy5678 Mon, 03 Mar 2008 00:00:00 GMT Ok.....This is my 1st post on this board.  It's nice to know that I have a place to come to ask questions.  I've always had questions about different things so now I can ask all of you.  This is one of them:) My husband and I have been trying to get pregnant for 4 years now.  No luck yet.  It's really made me think about my illness when I was younger.  If maybe that's the problem.  I had 3 1/2 years of Chemo.  Never had a problem since.  Thank goodness!  I'm just wondering if any of you have heard of there being problems with infertility later on in life after having cancer as a child. Thanks so much and I'm looking forward to getting to know all of you:) http://www.cancercompass.com/message-board/message/all,20062,0.htm HOLLAND Thu, 24 Jan 2008 00:00:00 GMT