Our online cancer forum at CancerCompass.com is a valuable source of support for all. Join now to compare cancer treatment methods, notes about the latest leukemia research and more. http://www.cancercompass.com/message-board/cancers/leukemia/1,0,119,7.htm Mon, 23 Nov 2009 00:00:00 GMT Mon, 23 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My dad (72) was diagnosed approx. 9 years ago with Chronic Lymphocytic Leukemia and hasn't needed treatment until recently. He had a triple bypass done in March 2009 and since that time has had trouble with fluid build-up in the plural space around his lungs and has had to have this drained twice.  He started chemo two months ago in the hopes that this would help with the fluid.  Unfortunately it hasn't and he's currently in the hospital having his lungs drained again and being treated for possible pneumonia.  Dad sounded very depressed yesterday when I visited.  He's tired of not being able to breathe, tired of being cooped up in the hospital, and tired of being sick and tired.  He said if he was able to he would have up and left the hospital the other day.  He's due to have his left lung drained AGAIN tomorrow (they just drained it 4 days ago).  Mom doesn't drive anymore and she relies on my husband and I to get back and forth to the hospital. Dad's been talking about "getting things in order" when he gets out.  Mom doesn't like to hear this since she knows that eventually he's gonna die.  Can someone out there tell me what to expect when the end is near or just give me some advice?  I have two siblings who live out of state and another who lives a couple hours away so everything falls on me.  Any info would be greatly appreciated. http://www.cancercompass.com/message-board/message/all,41550,0.htm athleticboyz Mon, 16 Nov 2009 00:00:00 GMT I am a Team In Training participant and I will be traveling the country Dec 7th through January 13th. I will be creating a video blog/documentary and am currently in search of survivors doctors researchers and anyone else who would like to be on camera to share their stories and points of view on blood cancers and why it's important to support the battle to find a cure. If interested please email me at sean@trainingacrossamerica.com and we can see if we can work with the route and schedule already planned out. http://www.cancercompass.com/message-board/message/all,41529,0.htm SeanTAA Sat, 14 Nov 2009 00:00:00 GMT A colleague of mine has recently been diagnosed with Acute Erythrod Leukaemia and I am trying to learn as much about it as I can.  If anyone has information on the prognosis of this cancer, as well as any success stories regarding the treatment of it, I would be very glad to hear from you.  Thanks so much! http://www.cancercompass.com/message-board/message/all,41404,0.htm Midmogal Mon, 09 Nov 2009 00:00:00 GMT Hello to all - I am a 40 year old woman with stage 4 pancreatic cancer - mets to the liver ( over 14 lesions - non resectable) diagnosed in October of 2007. I was originally diagnosed with adenocarcinoma of unknown primary origin but after molecular profiling have been told that it is most likely pancreatic cancer with a slight chance of colon cancer. I have been on carboplatin, taxol, tarceva, and avastin - alimta and avastin - oxiliaplatin, xeloda, and avastin, and now CPT 11, 5FU, and avastin. I have been doing chemo every 3 weeks for 2 years with one break. During that break my liver lesions went crazy and grew much larger and new lesions were seen. I have had numerous trips to the ER, been hospitalized a few times, had 3 blood transfusions along with almost every side effect out there - not to mention I have been bald for 2 years now. SO... I am just wondering if anyone else out there has been doing chemo for a long period of time with no end in sight and what keeps you going? I am trying so hard to stay positive mentally but my body is not helping with this. I am so fatigued all the time, nauseated constantly, and have issues with severe pain - all of which I take medicines for yet still have issues. I feel as though I am in a dark tunnel with no light at the end. I have 2 kids and a husband that I am fighting this fight for but lately I feel as though I am not much use to them - having more bad days than good and no energy to do much of anything. Yet I have to walk around with a smile on my face saying "I'm fine" all the time because no one wants to hear anything else - or should I say no one can tolerate the thought of anything else. What I really want to do is cry. The only thing that keeps me going is that the thought of leaving my kids and husband alone is more than I can bear. But how do you keep on going through chemo after chemo after chemo knowing that chances are you will be doing it forever - however long that is? My scans are not good enough for my oncologist to consider letting me stop right now and I know if I do stop the cancer could take over and I may not be able to get it back under control. I think I am struggling with the quality of life vs. quantity of life idea right now. Oh well - sorry about the rant - I really do know that I am blessed to still even be here at all when my prognosis at the start said I would not be - I am just really tired of feeling so bad and feeling as though I am becoming a burden. Tomorrow is a new day and I will continue to put one foot in front of the other and be thankful for what I do have. I just think it would help to not feel so alone, to know that someone else might understand. Thanks for giving me a place to vent! Lori  http://www.cancercompass.com/message-board/message/all,41355,0.htm Lomo1 Sun, 08 Nov 2009 00:00:00 GMT My wife is to have her chemo start next Thursday the 12th and the Dr is going to use Rituxan. Has anyone been treated using this and if so what was the side effects? http://www.cancercompass.com/message-board/message/all,41317,0.htm Grog1 Fri, 06 Nov 2009 00:00:00 GMT Just diagnosed.  Looking for information or advise on nutrition and alternative treatments.  65 year old male pescatarian Manaus http://www.cancercompass.com/message-board/message/all,41296,0.htm Manaus Thu, 05 Nov 2009 00:00:00 GMT my grandma has cmml and its known to be the worst of the worst i need to know if its possible that family like my dad and i can donate our bone marrow to save her!!! PLEASE if you know absolutly anything i would appreciate it!! =(     http://www.cancercompass.com/message-board/message/all,41286,0.htm itstime91 Thu, 05 Nov 2009 00:00:00 GMT My dad was diagnosed Sept. 13th with AML and started treated that same week with amonifide. It has been 7 weeks now, and his white blood cell count remains around 0 and he has developed infections. He is very weak and has not left the hospital since he started this treatment back in September. I have heard that many patients beat the leukemia, but then die from the side effects. Has anyone else been this weak and sick from a treatment before and recovered? He has a bloated stomach due to an infection. He can barely talk (he whispers). How long can you live with no white blood cell count? Any hope will be appreciated! http://www.cancercompass.com/message-board/message/all,41256,0.htm kippers72 Wed, 04 Nov 2009 00:00:00 GMT I realise that shaving my head is only a tiny step towards understanding what it must be like to be fighting leukaemia or any cancer, however I am hoping that in doing this and blogging my emotions, encounters and experiences that I can share an understanding of this small part of many people's lives. I am prepared to shave my head bald and remain bald a day for every $100 that I am sponsored. I will acknowledge all sponsors on my BLOG site and advertise business sponsors on my head- I will provide photos on my BLOG and regular journal entries. So $10 000 worth of sponsorship not only helps the cause tremendously but keeps me bald and blogging for 100 days- so help me hit my first $100 and sponsor now! and refer my sites.   http://shannonsgreatestshave.wordpress.com/ http://my.imisfriendraising.com.aupersonalPage.aspx?registra http://www.cancercompass.com/message-board/message/all,40938,0.htm soontobeshaved Fri, 23 Oct 2009 00:00:00 GMT Some of us feel CMML doesn't just happen. Cancer or leukemia never has existed in my family history. I am looking for more people with CMML who have been exposed to radiation and contamination  over a long period of time preferably in the oil/gas exploration. We need more people to come forward so to link this to certain exposures to have a class action lawsuit. http://www.cancercompass.com/message-board/message/all,40918,0.htm Pepper27 Thu, 22 Oct 2009 00:00:00 GMT I was told that CMML is very rare. There aren't many studies out there for this. I am looking for other people or more information on this Leukemia. http://www.cancercompass.com/message-board/message/all,40778,0.htm Pepper27 Sat, 17 Oct 2009 00:00:00 GMT My wife was just diagnosed with CMML Monday. I have searched the web for info on this and find very little. Also when I come here to the Leukemia massage board and it isn't even listed. Our Dr. said it was Chronic Myelo Mono Cytic Leukemia. (Dr's spelling) or CMML.  http://www.cancercompass.com/message-board/message/all,40474,0.htm Grog1 Wed, 07 Oct 2009 00:00:00 GMT suffering from Polycythemia. no such treatment avlble in India. a very rare case of mine it is. after going through my case history, doctors can understand that how much it is rare. want few doctors name & mail ID of france/germany....any country....no problem. so I can discuss & proceed. I am detoriating day by day. need help. its urgent. IS THERE ANY ONE????SAIKAT CHATTERJEE    AGE : 35   SEX: MALEINDIA http://www.cancercompass.com/message-board/message/all,40169,0.htm saikat Sat, 26 Sep 2009 00:00:00 GMT Hi there, my best friend (27 years old) just found out she has leukemia (not even sure what kind, she's still in the hospital having tests done). I believe she started chemo last night, and will be in the hospital at least a week. Unfortunately I just moved 750 miles away from her, and have no idea how to help. I do have a way to get a care package to her in the new few days, while she's still in the hospital, but have no idea what to send- I feel so clueless about all this, I'm not even sure what she's allowed to have in the hospital. I guess I'm asking if anyone has any suggestions? If you, or your loved one, was in the hospital with cancer, what did you/they want with them? Books? Teddy bears? Any advice would be appreciated, I just wanna be able to help her in any way possible, and I'm not sure what to do. Thanks  http://www.cancercompass.com/message-board/message/all,39773,0.htm hello650 Fri, 11 Sep 2009 00:00:00 GMT My platelets are down to 12000 now, otherwise I feel fine.  Im 75.  What do I have to look forward to?   Will bendamustine work? and is it a chemo drug? http://www.cancercompass.com/message-board/message/all,38806,0.htm Helens_Exotics Fri, 07 Aug 2009 00:00:00 GMT my aunt who is 85, has had 2 years of high elevated white blood cells. without any no reason. you would think she is 65, she is outgoing, her mind is fully there and dresses to the T. anyway i decided to take this furhter cuz, of her counts, i finally ask the dr for a referal to a hemo/onc. so we went this past april and the dr didnt want to do a bone biospy yet w/ her age etc... but she did take blood and examed her and the only complaint my aunt has was the chills and weight loss. the dr said back in april we will send the blood work out to the lab and if there is any red flags she would call. so u know no news is good news. WELL wrong!!! i took my aunt this past monday 3 months later thinking all was ok, no leukemia etc.. we did have to see anthor dr in the office beacuse the other dr was on vac. so this dr. said to us did dr. **** call u w/ the results 3 months ago. i said NO, I am her health proxy as well. he said it came back leukemia probably a stage 0. slow growing... but i am so upset with this dr. that no phone was made 3 months ago. so my aunt was not notified about this or I. so i am taking this furhter as i wouldnt want this dr. doing this to anthor patient. so i wanted to know with stage 0 any info from someone would be great??? thanks soooooooooo much...a very concerned neice that loves her aunt http://www.cancercompass.com/message-board/message/all,38073,0.htm Cross_my_Heart Tue, 14 Jul 2009 00:00:00 GMT how do u protect an implanted port cathetor when a little boy wants to play sports and be a little boy? http://www.cancercompass.com/message-board/message/all,38001,0.htm GRATEFULL Sun, 12 Jul 2009 00:00:00 GMT I was just wondering if research has been done to see if Quinine can be used to help lower platelet count due to Essential Thrombocythemia?I was on anagrelide for awhile, but the side effects were too severe for me.  I have been on hydroxyurea for a couple of years, but in the last couple of months I have been experiencing some very unbearable side effects from it.  I would love to find a natural alternative or diet...who wouldn't. I do take prescribed 81 mg. aspirin daily.  Has anyone heard or read about medical research on quinine for ET? http://www.cancercompass.com/message-board/message/all,37489,0.htm MerryJoy Thu, 25 Jun 2009 00:00:00 GMT I have been going through blood tests and doctor visits, in an effort to find out why my WBC was elevated, then the last blood tests showed my WBC had dropped down to almost high normal, but my platelets were slighting elevated, and both WBC and platelets have been going up and down during the last 3 months. The hematologist tested my DNA for the leukemia markers, but it came out negative. So today she explained the Essential Thrombocytosis, along with some other disorders than can be related. More blood taken today so she can test for the JAK 2 mutation, and if that comes out negative she wants to do a bone marrow aspiration/biopsy. I went in today to go over my labs with the idea that everything would be normal and it was just a formality, and got presented with this new possibility. My understanding is that if I do have ET, it could end up developing into Chronic Myelogenous Leukemia down the road. All that being said, my main thoughts here are if the hematologist is putting me through all of this testing, she must strongly suspect that ET is what I have. I actually mentioned that to her, and she didn't exactly give me a straight answer but indicated that she needs to find out a definite diagnosis so she is doing the tests and possible bone marrow testing, which I really hope I don't have to go through. Either way, I lose...either the JAK 2 test is positive - or I end up having to have the bone marrow biopsy. I can't believe she would put me through all this if she wasn't pretty sure of finding it. Any idea on how long this JAK 2 testing will take before I get the results?I'm just kinda upset here...going from believing everything is just fine and being able to go on an Alaskan cruise next week, to finding out that, no...something still isn't right and now I will have this in the back of my mind while trying to celebrate my 10th anniversary and having some fun. Just wanted to vent...this is a scary proposition and I guess I need some people I can identify with.Thanks. http://www.cancercompass.com/message-board/message/all,37458,0.htm Lavendergrey Wed, 24 Jun 2009 00:00:00 GMT Hi everybody, I just thought I should share an article with you:" Stem cell transplants improve survival for some leukemia patients: studyStem cell transplants improve survival among people with a common form of leukemia, researchers said Tuesday.Acute myeloid leukemia (AML) is the most common form of acute leukemia.It is usually treated with chemotherapy to produce a first remission, which nearly 70 per cent of patients under the age of 60 achieve, researchers said.Not every cancer cell is eradicated, however, so relapses can occur, since the blood and bone marrow haven't been restored to normal, said study author John Koreth of the Dana Farber Cancer Institute in Boston. " You can read the rest of the article here: http://www.oncologyjournal.org/blogs/admin/526-stem-cell-tra  Hope you find this as informative as I did! http://www.cancercompass.com/message-board/message/all,37240,0.htm HowardG Wed, 17 Jun 2009 00:00:00 GMT Has anyone out there been in a trail fro ET or JAK2 postive?  I saw something out there for a drug called TG101348. Just wondering. Also has anyone been up to NYC for a patient symposium on this stuff. I went 2 years ago Nov 7th 2007 and they are having a nother one this Nov 4th in NYC. You can find the information on a web site called CRT.ORG. You should check it out.  Everyone hang in there and be strong. Terri http://www.cancercompass.com/message-board/message/all,37126,0.htm Terrilynn Sat, 13 Jun 2009 00:00:00 GMT I know someone who told me they were diagnosed with luekemia about 20 years yet never sought treatment and the doctor this person went to apparently dropped this person as a patient.  Can this be possible?  I am very curious and would like some answers.  Thanks. http://www.cancercompass.com/message-board/message/all,37019,0.htm curiousbynature Wed, 10 Jun 2009 00:00:00 GMT HelloI was hoping to make contact with someone who has been diagnosed with Tcell Prolymphocytic Leukemia for peer support.Looking forward to hearing from someone.Happy trailsBrandy in Ontario, Canada   http://www.cancercompass.com/message-board/message/all,36848,0.htm Brandy_in_Hamilton Fri, 05 Jun 2009 00:00:00 GMT I believe my mother in law has been lying about having leukemia. This happened a few years ago and some things just dont seem right. -The date of her diagnosis is always changing-Her treatment details just dont seem to fit-She reused to let anyone go with her to appointments-She refuses still to let any family other than her son and husband kno of her diagnosis.-She gained weight-She refused any medication to help with pain or nauseaI need to kno about chemotherapy. All i do kno is that it is done thru an iv and takes a long time and makes you really sick. i dont kno about frequency or how long it takes to becom ill from the treatment or when it fades. I have not said anything to anyone about this. I dont want to offend anyone. I am just trying to understand and i am hoping beyond all hope that i am horribly wrong. http://www.cancercompass.com/message-board/message/all,36728,0.htm fallenangel646260 Mon, 01 Jun 2009 00:00:00 GMT I was diagnosed with aggressive natural killer cell (LGL) leukemia 6 years ago.  My prognosis at that time was less than 2 months.  However, I was considered to have undergone a spontaneous (and extremely rare)remission weeks after the diagnosis and have been essentially asymptomatic since that time.  I am now considered to have a chronic form of NK cell leukemia.This is a rare leukemia, and I have found no one else with this illness and limited information. Within the past 3 months, my counts and markers have begun to change.Is there anyone else who has dealt with this leukemia and can provide guidance as I am now facing decisions regarding treatment, etc.  My current oncologist leaves much to be desired.  So I am also searching for a new doctor.   http://www.cancercompass.com/message-board/message/all,36498,0.htm Grammie27 Mon, 25 May 2009 00:00:00 GMT