Latest Leukemia discussions http://www.cancercompass.com/message-board/cancers/leukemia/1,0,119,7.htm Fri, 16 May 2008 00:00:00 GMT Fri, 16 May 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, I'm unfortunately no stranger to cancer (breast cancer) and when my friend Angela's husband was recently dx's w/ leukemia I urged her get involved on a message board where only those having experienced the illness could truly relate.  She posted on the ALL board where there isn't much activity and hasn't rec'd a response.  I don't want her to become disillusioned and give up on a message board that helped me immensely, so I'm reposting out here on the general leukemia board in the hopes that someone can give her some guidance.  Please see her post i've pasted below and if anyone can offer any sort of advice on how she can get thru this tough situation (and what her husband might need the most from her), we'd be grateful.  Thanks to everyone on the board and wishing you all the best!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,24048,0.htm FriendofAngela Thu, 15 May 2008 00:00:00 GMT a family friend got diagnosed with tpe 1 leukemia two weeks ago. she has no insurance. she's 20 yrs old. she went to a doctor who did tests and told her her leukemia was early. the doctor recommended chemo. she had her 1st treatment and it went ok, 2nd she started feeling sick and turns out the chemo has caused hemmorahging (misp sorry). doctor said she was allergic to chemo and had to stop. the doc said she either could stop the chemo or try a hollistic approach . her fam is not helping her. she feels overwhelmed. I'm helping her get a doctor who specializes in this. I just need help.. I can't just let her give up. where do I finf a specialsit that can test her or help with healthcare. I don't know where to start. I need to help her. I'm praying there is help out there. I have faith in that and in her. I appreciate all help. thank you. http://www.cancercompass.com/message-board/message/all,23995,0.htm vvero Tue, 13 May 2008 00:00:00 GMT To Godspeedtoall, I was just checking to see how your daughter was doing.  It has been along time since I have been online.  Please update me.  Take care, Terri http://www.cancercompass.com/message-board/message/all,23827,0.htm Terrilynn Wed, 07 May 2008 00:00:00 GMT Hi everyone, My mom was recently diagnosed with T cell Prolymphocytic leukemia, a very rare, more aggressive form of leukemia.  I have searched the internet and most of what I have found is 5-8 year old information.  Does anyone know of any more current info, either websites or other places....  She is currently taking Campath subcutaneously 3x/week...   thanks for any and all help and info....  http://www.cancercompass.com/message-board/message/all,23436,0.htm cycleski Fri, 25 Apr 2008 00:00:00 GMT Hello- In October 2007, I found out I was pregnant (yay!) and the OB sent me to get all my bloodwork.  Well my platelet count came back in the 800s so my OB sent me to hematologist ASAP.  My hemo. repeated the bloodwork and yep my platelets were elevated but they had dropped into the 700s.  I kept having bloodwork every month and finally he sent me for a Jak2 test.  The first one was inconclusive but the 2nd one came back positive.  He was very surprised because I am only 28 but he said that with advances in testing, more and younger people are being diagnosed. My platelet count for the last three months have been normal so I am very grateful that my hematologist was on the ball and kept sending me for tests.  When he told me I had ET, I went home and googled it and of course got freaked out.  I then talked to him some more and he put me in the low risk category and wont be doing anything until I have a BMB which will be after I deliver my twin girls in June : ) He also assured me that most ET patients go on to lead very normal lives with normal life expectancies but that I will need to be monitored.  Since I am super serious about anything health related, I cant imagine that I will slack off with the monthly monitoring he is suggesting. I also talked to several close friends in the medical field and they told me that the old mentality of a 10-15 life expectancy for ET was reserved for elderly patients and that this was thought to be a disease of the elderly. That really put things in perspective and made me feel better because I plan to lead a long and happy life with my husband, my twin girls, and anymore children we plan on having. After I freaked out, I did realize that it is a good thing they caught this now.  It will allow me and my doctors to be proactive, especially important for pregnant woman and post partum. I am also lucky that I live in an area with excellent hospitals and medical research (Pittsburgh, PA in America). Thats my story : ) http://www.cancercompass.com/message-board/message/all,23318,0.htm mrsarc1105 Tue, 22 Apr 2008 00:00:00 GMT Hello, I was diagnosed with vocal cord cancer on Feb. 18th of this year. I had no chemo, just radation ( 11 more days!), it was caught right quickly, Thank God! I would love to find a friend that can relate to this for emotional support. Charlene http://www.cancercompass.com/message-board/message/all,23088,0.htm jimsgirll Tue, 15 Apr 2008 00:00:00 GMT Hi there... My friend Beth is 35 and has been battling LGL Leukemia for several years.  It went away for abotu two years after a year of oral chemo, and then it came back about three months ago.  They put her back on the oral chemo but she can't keep her hemoglobin up.  A normal person is a 16... her oncologist tries to keep her around a 9 through weekly transfusions.  On Friday she had to get three bags b/c she was down to a 7.  Anyone else going through this?  Do you have any words of wisdom for us?  She is literally living from one blood transfusion to the next... she doesn't even need the weekly checks... she can tell her hemoglobin is really low when she can hear her heart beating in her ears.  It SUCKS!  http://www.cancercompass.com/message-board/message/all,22824,0.htm IOWAGIRL Tue, 08 Apr 2008 00:00:00 GMT Hello.Sick for a while.Low IgG 4 -- compromised humoral immunity.  Mild increase spleen and liver and on CBC mild lymphocytosis.  However, high T cell count (rising over the last year)  now I think it might be 5500 - 6000 (normal range is 800 - 3300).  My  first TCP PCR was done over 7 months ago and found "small T cell clones against polyclonal background"  The possible diagnosis was positive for Lymphoprolification disorder but such spikes may be seen in a reactionary.  Local Onc-Hemo wrote possible LGL...I went to specialist for difinative dx... She tested AGAIN all the tests... The same test was done again about 3 weeks ago.  The spike increased..and the report stated "T cell clones (the word small was not there this time) against a polyclonal background, Positive for T cell lymphoma but can be seem in reactionary conditions.  I have been tested for all autoimmune "reactionary conditions" for close to 4 years now. So, the specialist ordered a bone marrow biopsy...  Anyone out there, can you please tell me what to expect?  I have opted for "conscious sedation" so I think I will be out (but breathing on my own).  AND... does this above sound familiar to anyone out there with rare labs and/ or other kinds of T cell problems or kinds of leukemias? Thank-you!PeacefulI go tomorrow, so it you find this, and can write today, it would be great. http://www.cancercompass.com/message-board/message/all,22668,0.htm PeaceLearning Thu, 03 Apr 2008 00:00:00 GMT I was reading about a lady that huband have this I do not take med. I have had it for 14yrs. It was not on the list so I put Leukemia because it can turn into it. http://www.cancercompass.com/message-board/message/all,22545,0.htm veryblessed17 Mon, 31 Mar 2008 00:00:00 GMT In Feb. of 2007 my 12 yo son started complaining of stomach pain.  It took 2 months to find that he had an infection of the lymph nodes in his stomach cavity.  They treated him with antibiotics and steroids, but 3 months later the infection returned.  They have done a biopsy of the lymph nodes, but found nothing.  After the surgery, his health has continuely gone downhill.  We have seen dr. after dr. trying to pinpoint a diagnosis, and finally in Dec. of '07 found that he had a parasite in his bloodstream called Toxocara.  That was treated and we assumed he would start getting better, but things have stayed the same.  He is in continual pain and is constantly back and forth with his symptoms.  We saw an orthopaedic dr. yesterday for his spinal pain and he asked me twice if we had had him tested for leukemia, then a 3rd time acted like I was stupid for not pushing the hematologist to do a bone marrow test.  These are his symptoms: general ill feeling, loss of appetite, loss of weight, low grade fevers almost every night (never over 100), chills or night sweats, constant spine pain. His blood work has also been all over the board since Oct. '07.  Here are the latest results: WBC - 3.5 L (this has been down to 2.9)Hematocrit - 35.6 LMCH - 31.8 HMCHC - 36 HNeutrophils - 35.2 LLymphocytes - 52.5 HABS Neutrophil - 1.2 LI am so confused and frustrated with dr's in my area that I have started bringing him to dr's 3 or 4 hrs away trying to find out what is wrong!  Should I push to have the bone marrow test done with a different hematologist?  I don't want to put him through unneeded procedures but we are at a loss of what else to do since we don't seem to be getting any answers.  His primary pediatrician sent me a letter stating that since nothing had been found and he continued having problems, that he would no longer be treating him and to find another dr!!!  I just want my child to get better - is it too much to ask for a dr. that will help me do that?  Please let me know what you think - I've had 1 dr. tell me it may be leukemia, then the hematologist that did not want to follow up with anymore tests, now an orthopaedic saying that he thinks he should have already been tested. http://www.cancercompass.com/message-board/message/all,22365,0.htm momof6angels Wed, 26 Mar 2008 00:00:00 GMT Hello i'm new here. My spouse recieved results today of cat scans. Adenocarcinoma stage4-Leukemia cutis. Anyone heard of this? Dr recommends bone marrow biopsy soon. I live in NY and have contacted cancer treatment centers of america in PA for help. I'd appreciate any kind of feedback to me about any of this. Thank you so much!God Bless!! http://www.cancercompass.com/message-board/message/all,22305,0.htm clairsgirl Mon, 24 Mar 2008 00:00:00 GMT Hi, I'm 27 years old. I have been diagnosed wth ET in December 1994. M initial counts were above 1.5 million. My doctor initially put me on Aspirin & Hydroxyurea & keep on checking the counts. In 1998 I stated Anagrelide but develip Diaherra because of this. I have started Anagrelide with 0.5gm/day with a maximum dose of 3.0mg/day. Counts came down rapidly. I have been having fatiques alot with headaches some times. Gradually my HB & HCT keeps going up, around 16 HB & 47 HCT. I have been doing Phelebotmies since 2001 till 2007 (around 17 times) with an internal of 3-6 months. I have stopped taking Hydrea since 2001 till Decembere 2007 & counts were automatically below 1 million. During this phase I have been having fatiques & headaches & sometimes red spots on the body. I'm a working man & going to office daily & sometimes travelling too on international visits.In Feb 2008, my counts went up to 1.8 million & than I started Hydroxyurea with 4 gm/day. Side effects were huge, my nails turns a little black & skin near nials were also dark. Counts even touched to 2.6 million & than cam down to 571,000 but when Hydrea were stopped they jumped to  1.1 million. I have been taking Hydrea but counts are still in the range of 1 million - 1.4 million. Now my doctor has advised to start Anagrelide again. As this medicine is not available in Pakistan very easily so I have ordered from Austria which will reach in next 4-5 days. Since Feb 2008, I have been doing CBC almost every week. Since last 4-6 months, I have been having Transmic Ishemic Attacks where I found my self totally lost for 10-15 seconds. I don't have burning effects on my fingers. Major side effects are headaches, fatiques & having pain in legs.I guess I'm one of the most youngest in the world who have this disease. Please do share your side effects so that we all should know what is coming in the future.Best regards,Zeeshan J--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--   http://www.cancercompass.com/message-board/message/all,22269,0.htm Zeeshan Sun, 23 Mar 2008 00:00:00 GMT My brother was diagnosed with Hairy Cell Leukemia a month ago.  He is undergoing a 6 week treatment.  Once a week for two hours he gets a drip of cladribine.His spleen is very enlarged...protruding out now.  What can be done about the swelling?  Is there some vitamin, herb or types of nutrition he can take to help?  We are less than thrilled with the doctor and the cancer center that treats him.  He was supposed to have a 7 day pump for his treatment.  A tube was put into his arm, up and over to just above his heart.  The 7 day pump was put on after he waited 5 hours for the chemo to get to the treatment center.  After wearing the pump for a week...it was removed along with the tube to his heart.  That afternoon we get a call that something went wrong.  We went in the next day and were told that he had been given the wrong dosage.  The nurse had ordered a one day supply, instead of the needed 7 day supply, so, over that week, he only received 1/7th of the dose.  Now he is on the more tradition regimen.  Never were told why he couldn't do the pump again, and got no straight answer when we asked.   He was told that he could go to work (as a machinist working with heavy machinery), but his spleen just grew worse after a few days of work.  Does anyone know of a good oncologist and/or cancer treatment center in the Denver Colorado area?  A second opinion and less mistakes might be what we need. http://www.cancercompass.com/message-board/message/all,22197,0.htm gmalou Thu, 20 Mar 2008 00:00:00 GMT Hi  my name is Gail and I am trying to find other people with Tcell Lgl leuekemia, my son was just dx with it 3 weeks ago and we are pretty shocked and would love to hear from others who suffer from this and have any insight or suggestions on treatment, nutrition, and emotional support. http://www.cancercompass.com/message-board/message/all,21745,0.htm worriedsickmother Thu, 06 Mar 2008 00:00:00 GMT   My 24 year old daughter  who was dx'd in Nov of '05 with AML subtype m4) underwent a sct in April of '06. and it was sucessful. (matched unrelated donor). She was 19 months post transplant when she developed complications in the lungs, She was admitted to the hospital, for shortness of breath. they immediately put her on Iv meds, for anti-fungal infections. After a week, and no improvement, and a second ct scan. Her lungs, showed what they said looked like broken glass or opacity of the lungs. they did an open lung biopsy, which showed absolutely nothing. She died of a blood clot to the lungs.about three weeks after the beginning of her labored breathing.My question to anyone is this? Has anyone had a loved one , who had the same issues from a sct? the shortness of breath. and the cat scans that seemed to show , perhaps spots on their lungs? only to have the biospy come back and show nothing?  The lung dr.s to this day, have no idea why she had such labored breathing? Surely this happens more often , to those who undergo a sct? The complications from, a transplant are numerous, and from what I have read on the internet, the most often cause of death, is lung problems, due to the extensive amount of chemo they use, along with total body radiation..needed before the sct. Is there anything that could have been done to prevent this problem from taking her young life? I miss her so much, Its been onlly 4 months ago, she passed away. thank you for listening to my story. http://www.cancercompass.com/message-board/message/all,21477,0.htm Gracemary Thu, 28 Feb 2008 00:00:00 GMT I posted this on a couple other threads but realized I went about this the wrong way and needed to just start a new one so it would be seen right away! My mother has myelofibrosis. She has been having re-occouring nosebleeds from 2-8 hours sometimes. This week she will have her second bone marrow test because her platelets were too low even after a recent transfusion. So, if the disease is progressing, what are the treatment options?  She is not able to have a transplant either...if it ever came to that, so I was hopeful that someone here would have a little information to share. Also, has anyone heard of heavy nose bleeding for hours being a symptom? and how can we make it stop quickly? She has to hold her head up and pinch the bridge of her nose, but then the blood will drain and start to choke her. It's just an awful experience for her and there has got to be a better way!  Thank you for any help, I don't have siblings, just a couple of family members that can help out and talk to about this.  http://www.cancercompass.com/message-board/message/all,21121,0.htm JuJusdaughter Tue, 19 Feb 2008 00:00:00 GMT Back in august I went to the doctor because of terrible headaches backaches, dizziness, fatigue and numbness in my feet. The doctor ordered an MRI, that came back normal but my symptoms persisted. I was having to come home from school because of my headaches and my legs hurt very badly. My doctor reffered me to a neurologist, In November I went to see him. He diagnosed me with chronic daily headaches, and ordered a cbc.I had passed out 3 times by then.  My doctor told me that my CBC was normal, but I looked it over and found some worrying totals. Here they are: eosinophils absolute test is high its 499  immature Granulocytes absolute was 14WBC: 4.2RBC:3.8Platlets: 189 Hemoglobin: 12.4 (low but normal range for a teen)  If anyone has any Ideas as to what I should do that would be great, I still am abnormally tired and have had a hard time eating(things dont look apetizing) I still get dizzy  , and have headaches every day, I also get hurt allot (I may just be clumsy) and bruise slightly easily. Thank you,Clara  http://www.cancercompass.com/message-board/message/all,21015,0.htm Clara123 Sat, 16 Feb 2008 00:00:00 GMT My mom was diagnosed with aml about 2 weeks ago. She has been on chemo for 5 days now at the University of Chicago. The doctors don't say too much and I am afraid to ask, but are there any survivors around 60 years old?I had her ask about a multivitamin as we have been taking Shaklee vitamins and they said not now during treatment. Is that standard? Do they make you wait until chemo is over to take vitamins? Thanks, Christy http://www.cancercompass.com/message-board/message/all,20922,0.htm christyanne620 Wed, 13 Feb 2008 00:00:00 GMT Hello Everyone Out There~~~My 77 year old husband has this RARE leukemia~~~T-cell large granular lymphocytic leukemia. It was diagnosed two years ago, but probably had been "smoldering" undetected for awhile. In fact, after looking at a lab report from a hospital for something else 10 years ago, his lymphocytes were HIGH, and neutrophils LOW then, but not to the EXTREME  that they are now....Lymphocytes are 80 which is much higher than the normal 10-45 range; absolute neutrophils have been staying at .6, not the normal range of 1.6-9.3. We DEFINITELY CHOOSE THE ALTERNATIVE, NATURAL METHOD of fighting this condition! A naturopath recommended high doses of vit.C, plus D, E, calcium, tumeric, artiminisin, maitake mushroom,& MSM. He also inquired about the ORIGINAL  Essiac tea, and has been taking 4oz of that 3 times a day.  He has functioned well for 2 years, after having a severe bout of pneumonia, which prompted tests that then finally proved the RARE form of leukemia.In November, he was FINE...but came down with a bad cold after visiting some friends. That is gone, but he is very fatigued and lying down much of the time....TRYING to regain his energy.  Have seen a few ideas on this site and shall do some MORE RESEARCH.All we can say is: NO CHEMO!!! It will only KILL the good factors he has left. And we are going to KEEP TRYING! Shall watch for more info on this site....Thanks everyone...."The Old Fogey" and Newt http://www.cancercompass.com/message-board/message/all,20850,0.htm Witts Mon, 11 Feb 2008 00:00:00 GMT Hii my name is Peppe' I have Myelofibrosis. I was diagnosed Sept 2006. I'm doing fairly well as of now.My reason for writing is to see if there are others out there that would like to communicate. I'm not sure how I got this, and I'd just like to compaire notes with others.God bless you all http://www.cancercompass.com/message-board/message/all,20770,0.htm Peppe Fri, 08 Feb 2008 00:00:00 GMT Hi!  I had labs drawn today with the following abnormal results:MCH  -- 32.0 (H)Lymph %  -- 14.0 (L)Lymph #  -- 0.9 (L)EOS % -- 13.5 (H)EOS #  -- 0.9 (Normal)Could this be indicative of leukemia????  Thanks! http://www.cancercompass.com/message-board/message/all,20610,0.htm pinkpanther Sun, 03 Feb 2008 00:00:00 GMT i just found out that my friend, who is 56 years old... was admitted to the hospital with a wbc of 189,000. he has not said anything about leukemia--but i've been reading and i read that a count over 140,000 is like a diagnosis. he has lost alot of weight over the last couple of years-- gets infected easily-- now his stomach is extremely bloated and they told him he has an infection and internal bleeding. this sounds like leukemia to me. am i on the right track here? i don't know what type it would be. i was thinking CLL-- but he is not THAT old and i read it mainly affects older ppl. is the wbc a diagnosis for leukemia? or can it be something else? he's also diabetic-- but he said this has nothing to do with that...? http://www.cancercompass.com/message-board/message/all,19840,0.htm bamala Thu, 17 Jan 2008 00:00:00 GMT Hi, my 85 year old mother was admitted to the hospital for pneumonia-like symptoms on Thursday her white blood count was 23,000, on Friday it was 24,000 and by the following Wednesday it was up to 137,000. She told us that her GP said that while they're looking at leukemia, but you need to have a white blood count of 140,000 to be diagnosed with it, so doesn't have it yet. Does this sound at all accurate? If a normal white blood count is 4,000-11,000, isn't 137,000 dangerously high and the rate that it's climbing frighteningly fast? We're wondering if it's more serious than she's letting on and just trying to warm everyone up to the idea that she has leukemia. Any thoughts? She said she'll know more next month when she goes back to the GP (why a whole month and why the GP and not an oncologist?) Thanks in advance. Joe http://www.cancercompass.com/message-board/message/all,19815,0.htm Defjoeb Thu, 17 Jan 2008 00:00:00 GMT hi...symptomatic for over 3 years.  "Possible T cell LGL" says 3 docs including hemo/onc.  No bone marrow test yet as it has not been offered and I am not sure it would matter anyway?????polyclonal t cells keep rising.  (Over 5000 now for 6 months.) had another test done... "small t cell clones against a polyclonal background".  immune compromised.  no reaction to pneumovax... fatigue and low grade fever for over 3 years.  lost weight for a while now stable.NO autoimmune dx -- tests all negative.   Symptoms include: joint pain, muscle weakness, fatigue, soft tissue pain, foggy brain and memory problems. flushing and night sweats.  EEG shows "wicket spikes" heart murmur...  Immune complexes in blood, protein and blood in urine -- kidneys and bladder fine -- no tumors.  (blood is transient - trace to 2plus.)  For WAY too long (Over a year) I was told these "vague" symptoms were due to stress.  CFS and FMS was dx.  "Nothing we can do about it." Finally I saw a great immunologist.  did b and t cell enumeration study and found high T cells.  tracked for a year and continue to rise as IgM was low and IgG varied.  Subclasses decreased in the year as T cells increased.  Last count, NK in B line percentage had decreased. Hem/onc said it takes 3 years for T cells to clone and this is very, very rare.  I want, I need, I would LOVE anyone that might help with similar dx, or situaltion, or professionals that might know more about T cell LGL leukemia. Thanking you in advance for any thoughts, links, or professional information.EmPS On another subject... my best friend is dying of ovarian cancer.   She kept going as if she did not have cancer.  Chemo, TPN, stiff upper lip... " She did not want to talk about it with others and did not get support from others (like this). It was her way. She burned the candle at both ends -- bright-light for a shorter time, I think. She has had a real hard go of it for the last 2 1/2 years.    After 2 years of not-working-chemo, she stopped. And you know... this was her way.  She may have lived a year longer if she did it another way?  Maybe not...  But "The c-word" was not allowed into her LIFE.  It "just" took over her body.  I love her.  And I have learned a lot.    http://www.cancercompass.com/message-board/message/all,19272,0.htm PeaceLearning Tue, 01 Jan 2008 00:00:00 GMT Ok...... we finally recieved the test results, but still waiting to see the doctor.... in the mean time, can anyone help us out with the the following results:Bone Marrow Aspirate:1). Suboptimal Speciamen with Cellualr Bone Barrow2). Slighlty left shifted Granulpoiesis3). Absent Storage Iron with no Ringed sideroblasts4). Moderate Increase in Reticulin Fibers WBC  11.7Platelet Count:  263 Bone Marrow Differential Count:  Cells Counted 300: Myeloid Cells 76 %Erythroid Precursor Cells  3 %Lymphocytes  19%Monocytes Cells 1 %Blasts 1 %C-KIT (poly)  Stained rare scattered myeloid precursor CellsCD34 - Stained rare scattered precursor cells, within normal limit Thank you.... http://www.cancercompass.com/message-board/message/all,19178,0.htm Lisaj Fri, 28 Dec 2007 00:00:00 GMT