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Planned Outage on 10/9
There will be a planned CSN outage on 10/9/15 from 5am-8am EST while the site undergoes some maintenance. We apologize for the inconvenience. Rowan CSN Support Team
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Acute Promyelocytic Leukemia
Newly diagnosed. Looking for others to share there experiences.
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LGL
Hello I am a 44 yr old women recently diagnosed with LGL my blood work has been getting worse everytime I have it done. Now i am Crit level is low and my white blood cells 19.9. I am always tired and sore body hot flashes that I thought we menopause but now know it comes from LGL. I am at a loss I don't know if there is…
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Treatment options/side effects for CLL leukemia
have had Cll leukemia x 5 years. Just had bone marrow biopsy and treatment to begin in couple weeks. My White blood cells are in the 20's lymph nodes count has doubled, spleen is much larger. Could someone pls enlighten me on the types of treatment my oncologist will recommend and the expected side effects? Would greatly…
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High possibility of a recurrence
I am a teen caregiver for my best friend who has just finished being treated for Leukemia. it's been an ongoing fight but he finally made it into remission but he has a high possibilty of having a recurrence. Since the beginning, he has refused to tell me what type of leukemia he has, I guess to spare my feelings. Can…
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shortness of breath in cmml
Hello, my 93 year old previously very healthy father is diagnosed with cmml. He is doing fairly well except for really bad shortness of breath. He doesn't want to get up to walk at all because he runs out of breath. Is this just how it is with this disease? His oxygen level is good when measured. Any words are appreciated.
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Those with idelalisib (Zydelig) experience can help their Canadian brothers and sisters
Currently, Health Canada does not cover Idelalisib for treatment of CLL. An organization known as Lymphoma Canada is lobbying Parliament/Health Canada to cover this new treatment. They are looking for feedback from any CLL patients who have been treated with Idelalisib (Zydelig), as they will use the information in their…
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My 6 old cousin was diagnosed with leukemia, but hes in Syria..
First and foremost, i'd like to thank you all for taking the time to read this. To those who are diagnosed or know of anyone diagnosed, my prayers are for you, don't give up and stay strong. I would like you all to meet Kirles (pronounced Carlos): http://i.imgur.com/TmINHiV.jpg?1 Carlos was diagnosed with leukemia a few…
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Deletion 11 CLL
My husband was diagnosed with Stage 3 Deletion 11q CLL four years ago. He was treated with chemo for 11 months and acheived remission, however, within 6 months the cancer had returned. He was put on study medication with no benefit and then on Ibrutinib with severe complications so it had to be stopped. Now he is…
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Can it be leukemia? please need help..
A friend of mine told me was diagnosed with acute leukemia around Easter. It's been 5 months now and from time to time I keep questioning if it's true. The facts that I know is that he has acute leukemia.He started treatment 3 days later (not chemo but other treatment because he has a problem with his enzyme and chemo was…
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Private Message Spam
Hello everyone, Thank you to those who've alerted us to the spamming from earlier today, and we sincerely apologize for the inconvenience. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this. If you received a message, please do not respond or…
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Sore neck/lower back muscles/joints with AML ?
Hello, My wife was diagnosed with AML for 2nd time and is being treated with a drug called Viadazza until a bone marrow donor is found. She has been experiencing really bad sore muscles in the neck and lower back. Has anyone who had AML ever experienced this? I don't know if it's because the drug Viadazza, Nuepogen that…
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i just lost my wife
i lost my wife two weeks ago.she was only 30 years old and was fighting all leukemia for almost six years.she has two bone marrow transplant and lost her battle to infections and pneumonia.i was with my wife for almost 14 years and i dont know what im gona do with out her.
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Diagnosed with APL
Hey all, So my name is Nick and I am 28 years old. On June 11 I was diagnosed with APL leukemia. This was a shock to me and my family as this was something that was not even on our radar. I spent 4 1/2 weeks in induction chemotherapy, then was released last week, only to have a seizure from the Keflex and go back into the…
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AML--M3 or APL
My 16 year old daughter has APL (diagnosed 2/02) and is taking ATRA. I want to know from others how they are tolerating ATRA. She has terrible headaches and irritability. Have people found any ways to make the ATRA have less side effect?
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Discussion Board and Chat Spam
Hello everyone, Thank you to those who've alerted us to the spamming from earlier today and we sincerely apologize for the inconvenience. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this kind of discussion board and chat spamming. If you…
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AML (acute myelogenous leukemia) ~ Help!
A very dear friend was diagnosed with AML. He is 39. He came in to the hospital very very sick and was not given much chance. He has been here for about a month now and went through his first round of chemo. He made a miraculous recovery! (Praise GOD!!) So far, he is showing remission, but has to have another bone marrow…
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Green tea extract EGCG for CLL?
I'm having trouble finding it, but someone posted on Sat (11/15/14) that he's been taking green tea extract EGCG for 17 years, and that's helped to keep his CLL at bay. I was diagnosed in April 2013, and am still on watch and wait, but have seen my WBC creeping up. Nothing alarming to my oncologist (30,000), and my energy…
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Being sent to oncology, advice ???
After seeing several drs and being hospitalized last month, I'm being sent to the oncologist/hemotologist. Any advice? My mri shows suspicious fluid in five sites between L1-L5 and the morrow is showing red cell conversion. I've been mute sick than ever for a full month now and I'm not sure what symptoms to point out at…
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AML/ALL and Fibromyalgia
I was diagnosed with ALL/AML in 1995 when I was 19 years old. I received chemo, full body radiation, multiple lumbar punctures infusing chemo and bonemarrow biopsies I also received a bonemarrow transplant from a unrelated doner and I have been in remission for 20 years. Thru out my life I have been also diagnosed with…
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LGLL T-cell
My Daughter has just been diagnosed with LGL T-cell Leukemia, she is 40 years old she was first diagnosed with " Hepatosplenic Gamma Delta T-cell Lymphoma " which we were told is very rare and very aggressive, but as her symptoms did not at all fit that profile, except for the enlarged spleen, more tests were done and…
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CLL
Hi..I'm new on this site and I'm searching for other people that have CLL. I was diagnosed 18 months ago and am stage 0, no treatments to date and am clinically stable. My life is not changes except I have too many days where I'm down and the "what ifs and the will I be here in 5, 10 years etc." My husband and I have not…
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LGL leukemia
hi my name is kieran and im from england . im 19 and was diagnosed with lgl leukemia just after my 18th birthday. i had horrendose headaches and i was brought into hospital and they found i was severly anemic so much so if hadnt come into hospital i would have died . at first the doctors thought it was mylodisplasia but…
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Private Message Spam
Hello everyone, Thank you to those who've alerted us to the PM spamming from earlier today. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this kind of private message spamming. If you received a message from rita44556 prompting you for money,…
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Inversion 16 (M4)
New to site and looking for fellow members that have the same type as me. I'm 23 year old male going on my fourth month in remission. I was diagnosed February 2014.
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CLL: Sensitive to warm weather?
I was diagnosed with CLL a couple of years ago, and have been having my blood checked every 6 months. I've noticed a pattern: when I get it checked in late August my WBC count has risen, but when it is checked in February it stays the same or drops a tiny bit. Coincidentally, I've noticed that I have been feeling tired…
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CLL
CLL diagnosis in Canada takes a while - GP referral to Oncologist --- June 30 to Aug. 27. Can anyone comment on my blood count WBC - 59,000 Platelets 99 RBC - 3.7 Lymphocytes 48,400 Cheers Dano *** Looking at Chemo once a month for 6 months starting in 3 weeks?
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Vidaza/ Azacitidine for AML? What are your stories and successes. My Dad is going through this now.
Hi. My Dad is being treated wth Vidaza in the hope of getting into remission so he can then go to London to have a vaccine trial for early relapse of BMT with AML. Our struggle right now is finding him hope in people who have succeeded with treatment post early BMT. His prognosis back in June was he has weeks/months to…
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Early relapse of Bone Marrow Transplant - Hoping to hear from survivors out there?x
Hi everyone. This is my first post on the discussion boards and I'm new here. My Dad is not very internet savvy and has asked for my help in finding him information on here. Dad was diagnosed with AML October 13 and had a Bone Marrow Transplant in Feb 14. He relapsed in June 14. He is desperate to find people who have…
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Thrombocytopenia
Hello, I was recently diagnosed with thrombocytopenia (platelets were at 50K). They did a bone marrow biopsy and aspiration yesterday to look for other problems. My Red and White blood cell counts were just a tad low (about one point). The docs have advised me this could be leukemia, MDS, nothing, or a few other…