Latest Leukemia (ALL) discussions http://www.cancercompass.com/message-board/cancers/leukemia/leukemia-(all)/1,0,119,7,48.htm Sat, 05 Jul 2008 00:00:00 GMT Sat, 05 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 Hi,Need help in deciding what to do... I have finished 6 treatments and I am in remission, visually they see no cells, but flow cytometry they see 0.01.  So basically 99.99 cancer free.  The docs want me to go through another treatment..  I am nervous about another treatment..  Is there any other alternatives that any other ALL patients have had.  I am on the Hyper C-Vad.  I have not been able to be an outpatient because of the regimen, so long hospital stays.  Please help me if you have been on anything else??  Thank you  http://www.cancercompass.com/message-board/message/all,19733,0.htm JoanneJ Tue, 15 Jan 2008 00:00:00 GMT Any one with myelofibrosis http://www.cancercompass.com/message-board/message/all,18324,0.htm Ethan Sun, 25 Nov 2007 00:00:00 GMT HI thereI was diagnosed with ALL PH+ on Oct 16th 2003, Had a allogeneic stem cell transplant On march 23 2004.  I am still on some anti-rejection meds as well as a plethera of others, but the GVHD is under control, using photophoresis. So to be abit on the proactive side and after having 3 surgery's for SCC in the last year my derm decided to go the 5FU route.  I am now on day 22 and am really miserable, I started putting the efudex on 2 times daily on just the AK's and the surgery sites, but that has changed as the surrounding areas showed activity.  In that case the doc wanted me to put it there, and after a week well there was alot to cover day and night.  I am glad for the forum as I see that I am experiencing the norm.  The dryness and stinging I thought was just part of the process and my doc doesnt even want to see me till after the 6 wk process.  It is hard to believe that this is all good when it hurts so much.  He did not say to use any vaseline, aguaphor or eucerin cream, but I see from the posts that it is commonly used after a 2hr waiting period and then to clean the area prior to an additional treatment.  I also dont get much sleep since I get woken up when turning and rubbing my face (sides) or neck on the pillow.. any thoughts here?  I guess that is enough for now.. thanks http://www.cancercompass.com/message-board/message/all,16474,0.htm luvtogolf Tue, 25 Sep 2007 00:00:00 GMT today dante my husband,gets relased from hospital after 13 days.hes neumonia is better,he still has the prednisone problem,he is been put on cortef instead,the doc,says he's adrenal gland might start working again,after they finish chemo,but nothing it's for sure,lukemia acute it's aterrible illness.we can just trust god and put our hopes on his holy hands,amen http://www.cancercompass.com/message-board/message/all,14888,0.htm anamaria Tue, 31 Jul 2007 00:00:00 GMT my husband,was put on prednisone steroid,during chemo his adrenal gland stop producing,and he was totally out of energy prednisone acts as artificial adrenaline.but now from the medication he has alot of other coplications,like crazy sugar levels,anxiaty,kidney disfunction,all this started with lukemia acute,is any body familiar with this medication?and side efects. http://www.cancercompass.com/message-board/message/all,14869,0.htm anamaria Mon, 30 Jul 2007 00:00:00 GMT hello,my husband of 22 years has been diagnosed with all,on 4/07.eversince he's been on chemo,hes poor body can't take it any more.but his spirit is so strong and he doesn't give up hope to be ok.i pray so much for him,the doctors say his bone marrow biopsy showed to be free of lukimia cells,but his blood countis still droping to 0'and he keeps coming back to the hospital with all kinds of infections,now he has neumonia,he is getting blood transfused every 10 days,iwant  to know if there is sombody out there that can tell me how to survive this suffering for our family. http://www.cancercompass.com/message-board/message/all,14864,0.htm anamaria Mon, 30 Jul 2007 00:00:00 GMT Here are some sites to check out for ET informationwww.mayoclinic.org/thrombocythemiawww.rarediseases.org/search/rdbsearch.html   (type in ET)www.oncolink.upenn.edu/    (type in thrombocythemia)Hope this is of some help to you.Rebecca    http://www.cancercompass.com/message-board/message/all,13863,0.htm Godspeedtoall Thu, 28 Jun 2007 00:00:00 GMT Hello,My daughter is 14 and was diagnosed on 6-1-07 with ET.  A routine physical with blood work & her platelets were 1 million.  Up to this point she has never had any illnesses.  (wonder how long she has had this).  Her pediatrician sent her to a pediatric Hemotologist/Oncologist.  They did platelet count studies on her for 2 months and her levels stayed relatively the same never going less than 800,000.  They scheduled a bone marrow and marrow biopsy and said that she is positive for V617 mutation and negative for JAK 2 mutation.  Now that I know that this disorder is very rare for children and usually is only found in middle to elder age this is very bothersome to me.  I would like to know what are the ages of some other poeple in comparison th my daughter...if you don't mind sharing this info with me.  Her doctor has been wonderful so far giving us information.  (I will list all info in the end of this blog).  He is doing some more in-depth testing on her.  He has now ordered  platelet aggrigation studies & a PFA-100 to further investigate her ET.  So far his suggestions are that she is a "low-risk" patient because of her age...even with knowing this we are leary and cautious.  He does not want to put her on any medication at this time.  The med's that I have read about sound like they have adverse side effects and cause this to progress into other things.  I am looking into homeopathic remedies and hopefully will be able to find something out there that is specific for lowering counts and clot prevention.  There is only the Mayo Clinic so far that I have found that specializes in ET...We will be taking a trip there to just for educational purposes and I will post my info about my findings when we get back so that everyone will get more insight regarding this disorder.  I do understand that medically there is no cure for ET...BUT, however, I do believe that there is power in prayer.  I will be praying for everyone who is in this same situation that we are.  Good luck everyone.  Please write me back. Rebecca  http://www.cancercompass.com/message-board/message/all,13862,0.htm Godspeedtoall Thu, 28 Jun 2007 00:00:00 GMT  I was diagnosed with T-cell ALL in February 06 & am 5 months into maintenance treatment.My Doctor has stopped my monthly dose of 1mg vincristine because of the damage it has done to the nerve endings in my feet. He said that I could end up in a wheel chair if I continue on with this drug! Has anyone else had a similar problem? Do the feelings return to the feet over time?Vestal http://www.cancercompass.com/message-board/message/all,12699,0.htm Vestal Fri, 01 Jun 2007 00:00:00 GMT I am almost half way through my maintenance chemo for ALL and am struggling with extreme tiredness. Can anyone who has been through this treatment tell me how long it took for their enegy levels to improve?ThanksVestal http://www.cancercompass.com/message-board/message/all,12697,0.htm Vestal Fri, 01 Jun 2007 00:00:00 GMT Hi There! Just got diagnosed for sure 3-29-07 after being chronic neutropenic since 6/03. Thank goodness for Neupogen (300 mg. once every 3 days) or my goose would surely been cooked. I'm 51 male and am gettting ready for Methodryxate and Prednisone treatment to start soon. Maybe they can ween me from the Neupogen if this brings my neutrophils up. I work in a chemical plant and wonder if 26 yrs. of this nasty work has brought this on. Have somewhat enlarged spleen but not in any discomfort to speak of. I'm glad to hear your takes on this situation and relieved that I'm not alone. With the neutropenia, all of my first three doc's ( averaging  26 yrs. apiece) told me I was their first one of these! Not a real comforting thought... Just wanted to say "Hi".                 KennyBoy http://www.cancercompass.com/message-board/message/all,10975,0.htm Kennyboy Tue, 03 Apr 2007 00:00:00 GMT I was recently within days ago told that i have a.l.l. I went to my dr. with regular knee pain and had regular blood work done but within hours of the lab work im being told to go to the hospital asap. I was admitted and my 7 year old son freaked out bad, he had never seen his mom in a hospital nor ever need one.I have tried to explain to him about my A.l.l. as he is very smart, but everyday his school calls, he is falling behind in his work, he wont listen to the teacher anymore, and when he is around me all he wants to know is if and when i will die? is this normal for a 7 year old, and if so what do i do or say to him to help comfort him so he will get back to a some what normal routine with school etc. again.I have tried just about everything i can think of to say to him to make him feel better but it only seems to make it worse each day that he brings it up. Im lost without words. please help. and god bless. http://www.cancercompass.com/message-board/message/all,9433,0.htm Tedibear79 Wed, 07 Feb 2007 00:00:00 GMT Have been dealing recently with some of the symptoms of Leukemia.  These symptoms could also go along with some other diseases such as anemia or possibly diabetes.  Dont know why, but this in particular has been on my mind.  Anyone have a minute to help me out and maybe give me an idea of what some symptoms are that I should be looking for?Would appreciate it more than you know, blessings and love! http://www.cancercompass.com/message-board/message/all,9103,0.htm Steeliey Thu, 25 Jan 2007 00:00:00 GMT hi my son who just had his 20th birthday has already fought lymphoblastic lymphnoma exactly one year ago and now it has reaccured as acute lymphoblastic luekimia we are devasted he will be getting a full bone marrow transplant and both of his sisters matched one was 100%and one was 99.98% so this was good but we are having a hard time ..Standford hospital seems to be the best place to go but he doesn't want to go there my question if anyone has been to standford ca please let me know how you were treated ..he wants to stay in sacramento ca. thank you http://www.cancercompass.com/message-board/message/all,7978,0.htm Titan Sat, 25 Nov 2006 00:00:00 GMT Hey guys and gals with ET I have created a support group specifically for ET patients. I have had ET for at least 8 years and I am still kicking. I do NOT feel that ET is cancer so I think we should have our own group. (no cancer cells are found in ET). The website is at http://www.msnusers.com/cureessentialthrombocythemia.... Elvis http://www.cancercompass.com/message-board/message/all,7271,0.htm Elvis Sat, 14 Oct 2006 00:00:00 GMT My friend put on the web a leukemia survival story. It may be of interest. Its at www.hopeforleukemia.com http://www.cancercompass.com/message-board/message/all,7263,0.htm Paulpaul Sat, 14 Oct 2006 00:00:00 GMT