Latest Leukemia (AML) discussions http://www.cancercompass.com/message-board/cancers/leukemia/leukemia-(aml)/1,0,119,7,49.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/ Is there anyone out here that has had mucor with their treatment for AML that has had a BMT?My husband was diagnosed with AML Sept 06 and had a near death experience with the induction. He was in CCU for 21 days after the 7th day and was put on dialysis and b-pap with complications of high fever from the fungus Mucor. He relapsed in March after only having the induction and no consolidation treatments. He went thru induction again and 4 consolidations treatments with no complications and to be in remission  for 8 months and relapsed this April 08. We are waiting to here from our doctor at Vanderbilt concerning the transplant from his brother who is a perfect match. Any info of help not horrow stories please.LC http://www.cancercompass.com/message-board/message/all,24452,0.htm kcmc9702 Wed, 28 May 2008 00:00:00 GMT Hi,My husband was diagnosed w/ aml in August of 2007.  He went thru induction chemo and 4 rounds of consolidation chemo.  He finished his last round in February 2008.  My concern is that he is relapsing.  He had a blood test at the end of April and everything was fine. About a week later, he started having aching joints and it hasn't gone away.  We are going to Disney next week and I want to hopefully set his mind at ease.  We're all worried.  If anyone out there knows the symptoms of relapse, I need to know.  Thanks in advance. and by the way, this disease sucks!!! http://www.cancercompass.com/message-board/message/all,24133,0.htm tinkertogo Sat, 17 May 2008 00:00:00 GMT My daughter was diagnosed of AML last year (2007) and she was only 1 year old at that time. Now, she is already 2 years old and 4 months. We have finished all the program needed for her to be cured (6 months of chemotheraphy) last Sept'07. Last month, March 2008, according to the doctor and based on her laboratory test, there was a sign of relapsed and by June2008 she was advised to undergo Bone Marrow Transplant. Honestly, I am scared and I really don't know what to do. First, I don't know the chance of her survival and lastly the cost of BMT. I am just an ordinary employee and I don't have enough money for the BMT. I really want to push through with the said procedure that's why I am surfing / searching which hospital can give a free service or can give a lowest cost. I will do anything for my daughter and I love her so much. So please, help me to support and give details of the things I want to know.Thank you and God Bless! Very  truly yours,Michelle  http://www.cancercompass.com/message-board/message/all,22797,0.htm jamiemilano Tue, 08 Apr 2008 00:00:00 GMT To anyone who can answer,       My mom was recently diagnosed with aml, unfortunatly she did not make it out of the hospital. My mom got a bruise on her chest on march 18, 2008(not sure if this was an early sign). She had started feeling weak on Easter. By tuesday she had another bruise but this time on her leg. She got a headache also on tuesday and it was so bad that she want to chop her head off. The headache was continuing so she had gone to her doctor which told her to she had a sinus infection and to give the bruise on her chest a couple of days. They were really worried about the bruise on her leg so they sent her to the hospital to get a ultrasound for a blood clot. The ultrasound came back normal. Now here is were I dont understand. My mom never woke up the next mourning, she was breathing and barely made it to the hopital. 3 hours later we were told she had aml. Also she had internal bleeding along with brain swelling with a bleed, 21 hours later she past. I am on this board to find out if any one can explain this to me? I just dont understand how this could be missed.  http://www.cancercompass.com/message-board/message/all,22791,0.htm Cbordo Mon, 07 Apr 2008 00:00:00 GMT My brother (33) was diagnosed with AML over xmas. He finished round 1 of chemo and is now in remission. There is disagreement between his doctor and another doctor at UCSF over how he should continue with his treatment. His doctor wants to do the normal 4-round consolidation therapy. Another doctor at UCSF suggests getting an Autologous Stem Cell Transplant. Is anyone familiar with this, personally? Any information is helpful. Thank you! http://www.cancercompass.com/message-board/message/all,21334,0.htm TouchedbyaTurtle Tue, 26 Feb 2008 00:00:00 GMT I dunno. I just don't understand doctors and their bedside manner - sometimes. I can't sleep well. I don't eat right. I'm depressed... AND I'm not even the one with cancer.My Grandmother has AML and was given a month or so to live today (well yesterday now... It's about 2:00 AM eastern time. She has been given the option to do more chemotherapy though.The doctor gave her until Thursday to decide. / My Grandmother is a retired nurse. She's helped sooo many people throughout the years and this is what she gets. I don't get it. I'd like to know more about AML and if anyone has experience with it. I don't know that much yet, but am learning. I just starting blogging about it. It seems to go well with my not sleeping well and not eating right... :-(Last year during her second dose of chemotherapy, she got an infection in her port... her arm became swollen and black & blue  ... from the i.v.s they were giving her, she became swollen with about 40 pounds of extra fluid... and they even let her head drop (forward) and she got a NASTY bruise on her forehead... had congestive heart failure and to top it off, lost her memory for a while AND had no clue where she was.Any similar experiences? How have you handled it? Any suggestions? Does anyone blog about their experiences with Leukemia? http://www.cancercompass.com/message-board/message/all,21129,0.htm grandson Wed, 20 Feb 2008 00:00:00 GMT My dad was diagnosed with AML on Nov. 30. We have since found out that he has MDS making it very challenging to overcome leukemia. Despite all of this, we entered him into Induction Chemotherapy treatment at Stanford Medical Center for 6 weeks. After being discharged on Jan. 4, he started suffering from leg pain after one week. We have since discovered that a chloroma, or mass of leukemia cells, has formed at the base of his spinal cord. This mass is pinching nerves and he has loss the use of both legs. He is undergoing immediate focused radiation on this location to hopefully reduce or kill off the chloroma completely. The doctors fear he cannot undergo a second round of induction chemotherapy, but if we don't we aren't sure what the prognosis will be. Does anyone have any feedback or tips on this leukemia? Our mom is 58 and fighting Stage IV Leukemia. I'm 30, my sisters are 25, 19 and my brother is 23. We want to help our parents. Thank you in advance! http://www.cancercompass.com/message-board/message/all,20443,0.htm SLOFamily Tue, 29 Jan 2008 00:00:00 GMT had my Bone marrow transplant June 11 2005 still on predisone but very low doses life is managable the predisone took a toll on my personal relatesonship for which i cared deeply about predisone is not good i had to fight back from the effects of it i had to become stronger than it but had to do this on my own to survive otherwise it would have taken its toll on me. but if you fight hard you will survive,  Tony http://www.cancercompass.com/message-board/message/all,18260,0.htm Ath4059 Fri, 23 Nov 2007 00:00:00 GMT Hi my 50 y/o sister underwent allogenic transplant in May. I was the donor and we were an incredible match. Unfortunately 78 days later her leukemia is back. Last lab work indicated her blasts were 67%!!!! and platelets down. Are we out of options? Can anyone tell us what to expect? Will she continue to receive transfusions, as necessary. At what point will all medical interventions stop? How much time does she realistically have left? Thank you.  http://www.cancercompass.com/message-board/message/all,14777,0.htm whirligig Fri, 27 Jul 2007 00:00:00 GMT Hi, my name is Carol-- my mother-in-law was diagnosed with AML July 06--we did an experimental treatment here in Missouri at Barnes Jewish Hospital--called Decitabine.  She responded for a short time, but now we are in hospice.  I am asking for information on the end stage symptoms of AML-- she is 74yrs old.  The blasts were 87% 2weeks ago in the hospital.  She is at home and we(family) are taking care of her.  She is progressively getting weaker.  Now she is starting to vomit.  She has a horrible canker sore inside her mouth(cheek)--we have been giving her oxycontin--for pain control.  Just want to know how we will know when she is close the end of her days--its so hard to watch her get weaker and weaker.  I do however know that someday she will be free of this horrible disease and be rejoicing in heavenGod Bless,Carol http://www.cancercompass.com/message-board/message/all,13898,0.htm Carol65 Fri, 29 Jun 2007 00:00:00 GMT I have an 8 yr old sister with aml.she just relapsed a week ago after a yr in remission. her last round of chemo made her so sick to almost dying and she became paralysed in nov 2006 due to the treatments.its been almost 7 months since we left the hospital .she has really improved and most of her bodyparts are now working perfectly.unfortunately the doctor said that he could not give her her only treatment option which is bonemarrow transplant.reaons being he is afraid that her heart might fail due to the strong chemo that is given before transplant. this has left us with no other choice.please advice us on what we can do and any options that could be available.sue http://www.cancercompass.com/message-board/message/all,13819,0.htm Tashamaria Wed, 27 Jun 2007 00:00:00 GMT I have an 8 yr old sister with aml.she just relapsed a week ago after a yr in remission. her last round of chemo made her so sick to almost dying and she became paralysed in nov 2006 due to the treatments.its been almost 7 months since we left the hospital .she has really improved and most of her bodyparts are now working perfectly.unfortunately the doctor said that he could not give her her only treatment option which is bonemarrow transplant.reaons being he is afraid that her heart might fail due to the strong chemo that is given before transplant. this has left us with no other choice.please advice us on what we can do and any options that could be available.sue http://www.cancercompass.com/message-board/message/all,13820,0.htm Tashamaria Wed, 27 Jun 2007 00:00:00 GMT So i have a friend who is about to turn 18. She just went to the hospitol to get testing to Leukemia. She has been sick for awhile, and it all started with a knee opporation. The doctors thought she had Lupus, and then Juvinile on set arumithide arthitis (sorry spelling) and now her blood work shows a good chance of Leukemia. She is 77 lbs and about 5'2, her hands and feet and jaws are swelling and both knees are about three times the size they should be. Anyways, my point of posting this was just to get some thoughts on this and suggestions of support for her, and some more information about all of this. Anything would be help full thanks. http://www.cancercompass.com/message-board/message/all,13631,0.htm Luvnyou4eva Wed, 20 Jun 2007 00:00:00 GMT I had a BMT in Oct 2006.  Im home now and doing well.  Counts are great.  Energy and appetite are picking up.  I was just wondering if anyone had any idea why my hands/arms and feet/legs are swelling all the time.  Its pitting edema...lots of fluid retention I guess.  I was on diuretics but they did not help.  I am  now on a blood pressure med.  Docs have run all kinds of tests.  They are leaning towards graft vs host as a cause.  It seems the days I am on my feet more it is worse.  If I do alot of cooking or typing or walking my hands swell more. http://www.cancercompass.com/message-board/message/all,12151,0.htm Maryelizabeth68 Thu, 17 May 2007 00:00:00 GMT Hello, My brother has just been diagnosed with AML and has just started chemo, he is 25 and was previously healthy, i need help on what supplements to reccomend to him during chemo and in 3 months when its over to avoid relapse. I have read most of whats available on net regarding this and have come up with amino acid from tea L-theanine, zeolite, oxy- E anyone know of these ? I also have been advised to look into Cesium ph therapy which i have, but i have yet to hear a good testimonial of someone who has been cured by it.any info would be helpful http://www.cancercompass.com/message-board/message/all,11672,0.htm Anxious1 Sun, 29 Apr 2007 00:00:00 GMT Good day to everyone. My name is Julian Martinez. I would first like to say may God Bless all of you that are dealing with cancer or those who have survived. You are very strong willed and are the reason others keep hope. My supervisor/mentor has a niece that has just been recently diagnosed with AML. I feel really horrible for her. Her niece is only 14. I've been doing my research and see that children younger than her have survived and are still living as we speek. I've been doing research on this type of cancer, but the real research I believe comes from survivors and people that might be going through this. The reason I decided to write this message was for messages of hope and faith from survivors or those who know someone that has survived. My mentor's niece is scared and believes that she is going to die. I was hoping that if you have a survival story if you wouldn't mind sharing it with me to pass on to her. Once again thank you for all the support you can give. I will continue to keep all you in my prayers. http://www.cancercompass.com/message-board/message/all,11566,0.htm Julian Wed, 25 Apr 2007 00:00:00 GMT Hi,My 41 year old husband was diagnosed with AML last Thursday and he is just about to finish his first round of chemo.  I have been strong for him all week but feel so down today and worry that he won't be able to beat it.I would appreciate any personal stories of success. Kind regards, Sam http://www.cancercompass.com/message-board/message/all,11455,0.htm Sam.mac Fri, 20 Apr 2007 00:00:00 GMT My mom is being treated for AML  with Vidaza injections.  Has anyone any experience with this drug?  She is 89 and has been getting a transfusion about every 2-3 weeks since Jan.  She is to receive eight daily injections. She has had three and is doing fine as far as any reactions.   I was wondering if anyone knew of specific diet recomendations for AML.  Sure would appreciate any insight. http://www.cancercompass.com/message-board/message/all,10918,0.htm Emeraldglass Mon, 02 Apr 2007 00:00:00 GMT I was treated as a patient who had thrombcythemia 30 years ago after a bone marrow biopsy.Never took any kind of medicine and truly forgot about my disease...until now. I am 50 years old now and after feeling weak and getting dizzy, I went to a hematologist who asked for a bone marrow biopsy and all sorts of blood tests. After meeting with him, he told me that I still have Essential Thrombocythemia but it is overlapping with Myleofibrosis now. He gave me some steroids for a week and some folic acid pills, and wants to test my blood every other week. Anyone else experienced that?Louna  http://www.cancercompass.com/message-board/message/all,10553,0.htm Louna Tue, 20 Mar 2007 00:00:00 GMT i have a 5 year old son who was diagnosed in july of 04 with apml a form of leukemia. he relapsed in dec of 05 only a month after finishing his treatment in his central nervous system. he went through countless interthecal chemo treatments, he is not chemo sensitive. he also underwent full brain radiation and full body radiation prior to a bone marrow transplant. good news is he is now doing great physicaly. my problem now lies with short term memory loss. he is struggling so hard in kindergarten. one minute he knows how to spell cat the next 5 minutes he looks at it like chinese. i am lost as a mother trying so desperatley to help my son learn . he trys so hard and just cant seem to remember. i am looking for anybody who can give me any advice or support if they have experienced anything remotley similir . thanks Amy and Casey   http://www.cancercompass.com/message-board/message/all,10122,0.htm Amyandcasey Tue, 06 Mar 2007 00:00:00 GMT I am making a documentary film about MDS (Myelodysplastic Syndromes) for newly diagnosed patients. I would like to hear from MDS patients and caregivers who have been living with the disease.  What do you think the newly diagnosed patient needs to know?  What information is important to know?  How did you cope?  What advice would you give to a newly diagnosed MDS patient? http://www.cancercompass.com/message-board/message/all,9604,0.htm Bruce p. Wed, 14 Feb 2007 00:00:00 GMT my name is kaye and my husband of 26 yrs has leukemia. has had it  for 1 yr-march3,2006. we are no longer getting treatments. they are not working. we are doing Odyssey. home healthcare now. they say it is just a matter of time. its been 3mnths now and he is so skinny and weak. he can still walk but eats very little. i need to know what are the signs of death and what to look for. i am at witts ends. need some one to talk too. he is only 46 yrs old http://www.cancercompass.com/message-board/message/all,8865,0.htm Peifferbackkaye Tue, 16 Jan 2007 00:00:00 GMT Surviving and Living with Leukemia: Hello, I was diagnosed with leukemia on December 3, 2003, (AML M4eos), at the age of 24. I went into remission after my first round of chemo and had to continue with four more intensive rounds of chemotherapy until May 2004. September 2005, I was getting my monthly blood work check up and my White blood cells had dropped drastically to 1.4. I had to have an emergency bone marrow biopsy. First I was told I was clear, but then after the molecular test, FISH, came back, it showed there were 5% leukemic cells. My only option at that point was a bone marrow transplant. April 5, 2006 marked my new day 0. I now have male blood in me. The labs call to ask if I am a male. I am on month 7 post transplant. For years, I have been trying to graduate. And leukemia keeps putting it off, but I keep fighting it back. For my final project at my school, Eugene Lang College in New York city part of the New School. http://www.lang.edu, I am compiling information from people with leukemia who are surviving. You can be in the middle of treatment, post treatment or even pre-treatment. I would like to first put this on message boards and see the response I get. I have read a few books over the past few months on leukemia-patients, young patients, people who have watched their loved ones die from this disease, the 60 minutes News reporter who passed away recently, Ed Bradley. There is also Mary, from Peter, Paul and Mary who had a bone marrow transplant over a year ago. I have realized how little information is really out there for the patient and even for the world. I watched the 60 Minutes episode on Ed Bradley after he passed away and I was angry of the reporting. This is a journalistic video of someone's life and there was not even five minutes to teach what leukemia was or how it affects someone. It usually is just said in passing, "an infection, the person could not fight." But there is so much more than that. Some of my friends didn't even know what a bone marrow was, didn't even know they had this thing in their body called a bone marrow. It is important to teach and learn about leukemia but it is also really important to have more people's voices heard who have had this disease. These personal stories are reassuring for the next person who is diagnosed in helping him or her get over their own fears or learn to control them. I see the research of finding cures for cancer important so people do not have to go through the things we've been through. But more than that, there are people going through this. We need to look inside ourselves to deal with the subjective feelings this disease gives and gave to us. That is exactly my focus. In ending, I want to use one of my favorite quotes from Carl Jung, "Who looks outside, dreams-Who looks inside, awakens" If you have the time, I would really appreciate these questions answered. You can answer on the message board or you can send them directly to me at: jfalkenstern@mac.com Also, if you are interested, I have a website: http://www.jfmedicalfund.org I thank you in advance. Questions: 1. When hearing your diagnosis, what was one of your biggest fears? 2. What did you do to deal with this fear? At this point, where is that fear in your life now? http://www.cancercompass.com/message-board/message/all,8196,0.htm Sayonarabeat Sat, 09 Dec 2006 00:00:00 GMT Dear All: When we found out our mother had Leukemia in November 05 our family was devastated because not only was we faced with losing our sole financial provider we were also losing the only parent we've ever had. God made a way for us to pay the bills and keep the household going and he blessed us with her going into remission; and also a possible blood donor. Our hopes were shattered when complications from other problems such as fibroids and a weak heart caused her to relapse. Yet God gave us more faith when more chemotherapy caused her to go into remission again. Still our dreams were shattered once again when we had to fight with the insurance company over paying for her much needed transplant. During our battles with the insurance company my mother's health has deteriorated and her doctors now says her health is now very critical. We fought and fought with the insurance Co. and approximately 2 weeks ago God answered our prayers once again when the insurance company approved her transplant. On October 14, 2006 my mother asked all of her children to come visit her and the hospital to tell us she has 4-6 months to live if that. My siblings and I were totally devastated! How could this be? I thought we were on the road to recovery! Her doctors say that her conditions is too critical that a transplant will not save her because the cancer has spread to 95% of her body. They also say that Chemo will not work for her any more because her body has become immune to the treatments. I'm the oldest of my mother's children and I now have to support my younger siblings, financially and emotionally. I don't want to discuss these things with my mother because I feel like discussing them is losing hope for her. I don't want to see my mother suffer but I don't want to see her go either. Everything feels so surreal; I feel as if I'm in a fairytale land.reality has not sent in yet. I'm so scared! Does anyone have advice for me? http://www.cancercompass.com/message-board/message/all,7306,0.htm Mona26 Tue, 17 Oct 2006 00:00:00 GMT Dear All, A success story. A patient who had accelerated Phase CML, now still alive 19 years she wrote a book...human interest type stuff...but may be inspirational and it gives hope www.hopeforleukemia.com http://www.cancercompass.com/message-board/message/all,7265,0.htm Paulpaul Sat, 14 Oct 2006 00:00:00 GMT