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Some tips from CSN
Welcome to the CSN! Below are some tips to help you get started following and posting on the boards. You can follow your preferred discussion board to get notifications of new topics and comments. To follow a board, navigate to your preferred board and then select the bell at the top, followed by your notification…
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For those of you with Leukemia
I just wanted to survey and find out how old you all were at diagnosis and what were your labs like? WBC? neutrophils? anything else abnormal? I don't really have any symptoms but I am seeing a hematologist/oncologist at the moment and recently had some elveated labs which is unusual for me as I never get sick, not even a…
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You Are NOT Alone
https://youtu.be/If3NnwjQ7KQsi=84SoiKTRxo4YFRnK At 19, I was diagnosed with Leukemia, and now, 17 years later I want to share my story to let others know they’re not alone. My hope is that by opening up about my journey, I can bring comfort, strength, and connection to anyone facing a similar battle. In the link, check out…
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CML
anyone out there have CML chronic myelogenic leukemia
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resmed airsense 10 and cancer
A couple of my doctors were talking with me about my cml diagnosis, till this day I try to figure how I caught it. The doctor in your office before you was a sleep apnea doctor I can’t remember his name but he did my test there and at the time they prescribed a resumed air sense 10machine It was between September and…
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I have anl
i am new to this. I wanted to share my story.
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Choices with AML
I was diagnosed in 12/23 with AML I am 102 days out from my stem cell transplant at UVA. I am about to go on maintenance chemo for 1 to 2 years to help avoid a relapse. Wondering if there is anyone that has been down this road and would love to hear how they are doing with it. My schedule will be every 8 weeks 5 days of…
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Leukemia- Adult
Good morning, I was diagnosed with ALL- ph+-bcell in May. I spent a month in the hospital and I am now continuing treatment outpatient. I am struggling to find any active support groups , for adults, online. Can anyone steer me to an active group?
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acute lymphoblastic leukemia
Thank you all for sharing your life stories. As a mother whose 6-year-old son has been diagnosed with ALL, I understand the need to be strong for him. It's natural to question why this happened, especially when we've been so careful. When my son asked me in the middle of the night if he has cancer, I was at a loss for…
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Radiation as a Child for Enlarged Thymus
As an infant I was radiated in 1946 for an enlarged thymus gland in the mistaken belief that this would prevent SIDS. The amount of radiation I absorbed was equal to ten common CT studies today. This treatment was commonly used in major hospitals and even pediatricians’ offices across the country. Thousands of infants and…
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Scared & Emotional
After waiting 16 days, without my PCP giving me any info except a referral to a Hemotologist, I was told I have CLL. I now have to wait 7 more days to find out "specifics". The lack of communication with my health care providers is frustrating. I'm staying positive with my family & friends, but silently I'm freaking out.
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CLL Discussion Group
I just found this group, thank you. If you are looking for information on CLL and treatments, HealthUnlocked has an active, very informative group. Go to HealthUnlocked.com and select the CLL group. Also check out BloodCancerUncensored.com I am struggling through watch and wait, no treatment planned but lots of symptoms!
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Suspected CLL
Hello , I am looking to find out more information from people who has been diagnosed with Leukemia. My father had done some blood work and it showed abnormal WBC . 22.2 to be exact. Everything else is normal, as far as RBC. He was send to do ultrasound that showed all organs in great condition with no enlargements. He was…
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CLL & an Enlarged Spleen - Treatment and What to expect??
My husband has CLL and has been on "Watch and Wait" for about 10 years. His Lymph nodes go up and down in size but now he has an enlarged spleen and the doctor wants to start treatment. He is worried if that is a drastic step or necessary or what to expect? Does anyone have any advice or suggestions or what to expect? She…
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Apl
Hi I dont see anyone that have apl in 2023 I hope you are well I am from Albania and 3 months ago I was diagnosed with apl I stayed in the hospital for 2 months with chemotherapy and I use atra 7 grains a day I am very scared, but with faith in God here the hospitals don't have them and I have to buy them myself with the…
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CLL fatigue
Has anyone experienced fatigue without any other symptoms or with labs that do not support treatment. I am early stage CLL but there are days when I am quite fatigued and I'm not sure why.
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When your CLL is coming out of remission, can it affect....
....your mental state, without you even realizing that it's coming out of remission? For example, can the defective white blood cells take up space in your brain that normally your serotonin would occupy? Or could normal white blood cells be pushed in to your brain, taking up valuable area that normally your serotonin…
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LGL Leukemia
My husband was diagnosed with LGL Leukemia 14 months ago (Jan, 2012). We had just lost his Dad to Multiple Myeloma four months previous. It's all been overwhelming. I would like to reach out to any LGL patients, caregivers, spouses etc. It's been very difficult. We thought we were on the right track with Methotrexate and…
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T-Cell LGL treatment
In 2012 I was diagnosed with MDS, but later on they diagnosed T-Cell LGL. At one point, I needed a blood transfusion every three weeks. I was put on methotrexaat for 7 months without any effect. After a consult with Professor Schouten in Maastricht, the Netherlands, I was put on neoral ciclosporine and, to my surprise, it…
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Life after Cancer
How are some ways you guys have coped after Cancer? I don't really know how to live my life now. It's been really hard to get back into just living my life normally. I feel like I'm not the same person anymore:( I guess I never really processed any of it til now.
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survivor remorse
I'm not sure if anyone has this issue. I've looked for years for people treated in the 1970s. No luck so far. It gets difficult thinking I'm one of a very few number.
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ALL
My daughter is 42 and was just diagnosed with ALL she needs a BMT
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Disability?
After undergoing a bone marrow transplant for ALL,is that still qualify as having a disability?
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T Cell Acute Limblastic Lakemia treatments and things happened to me job wise so far
I Had chest Pain, really sharp left side on Sunday, and Noticed what I thought was a bug bite on my neck, I went to work Monday, and was having issues short ness or breath. That afternoon I went to the ER and they took X rays and did not see or catch anything, so I asked about the bug bite on my neck it had gotten bit…
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Worried about 17yr old son
Hello, for the past few months my son has been dealing with horrible night sweats. He said they happen about 3-4 times a week and are severe. He sleeps in his underwear but his sheets are completely drenched through. I don’t know if I’d say he has other symptoms that are new. He’s always tired but he’s a teen and has…
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Anyone with blood cancer has related to this
Yesterday I had pain in my ribs and back like I got kicked then it felt like I was on one of those rides that spins so fast you stick to it. After I slept for 14 hours. I've had bad days but nothing like this has anyone been through this?
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hydroxyurea
Is anyone on this medication and can you tell me your experience please?
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connecting with others
My name is Carson. I was diagnosed with AML in February of 2023, I am 21 years old. I would just love to connect with others who are experiencing the same battle as me. Please feel free to reach out!
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AML Survivor
Hello all, my name is Ryan. I was diagnosed with AML when I was almost 4 years old. I am now 23, and have some vivid memories of my experiences. Over the past year I have tried to collect as much information and pictures as possible to get a solid understanding of my battle. I am just now getting to the point where I feel…
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Planning return to work after BMT
I had ALL relapsed and received BMT 2022. Currently, I am under LTD benefit from my company. I have diabetes insipidus, which means I am going bathroom more frequent . Now I am planning to return to work, my position is a service agent, have to stay online all the time once the customer called in. what i am thinking about…
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Chemotherapy for Childhood Cancer
Hello everyone, so I am posting on here as a caregiver... The Past 17 months has been very Difficult especially for our sweet Boy Ash who is a fighter and still is fighting and would definitely win! I am posting to ask if anyone is got any experience with Childhood Cancer and what is there to expect? even though our sweet…