Experiences with

Leukaemia

Friends and CLL Society supporters: This isn't easy. After consulting with my wife, my family, my closest friends and key supporters of the CLL Society, I decided it was best to again share details of my personal battle with CLL in a very public way. After a wonderful run of 69 months on Ibrutinib,

Have been on 30grms of Ruxolitinib now for nearly 6mths and thankfully I have never felt so well. No itching which was severe and bloods are great. Brilliant consultant who has really looked after me and worked hard to get the drug for me. Diagnosed with Jax-2- positive MPN consistent with PV diagnosed

Hi, I am happy to have joined this group. I am also new to this site and would appreciate any guidance anyone may have. I am 44 and was diagnosed with CLL less than a month ago. I caught a virus in December and my whole neck down to my collar bone was in small painfil glands. WBC were at first 16 then

Patient advocate and GP training lead, Nick York, will be on Sky News from 9.15am today talking about why GPs are being urged to do more blood tests - find out more by tuning in. We hope to share his clip later today. At 2.30pm, the APPG on Blood Cancers will be holding a debate in Parliament on blood

I am CLL , Dx in 2013 and not yet started any treatment . My lymphocyte count has gone up to 1.50 lakhs, mild enlargement of spleen and a few lymph nodes in stomach and neck .No fever , No night sweat, No fatigue. CD 38 negative , Zap 70 negative. I am feeling very tense due to any possible damage

Just wondering if anyone is experiencing acute lymphoblastic leukemia as my mum was diagnosed last February and went out of remission 14 days after going in to remission what happens next as they have had to put her sct on hold in light of new results

There are at least 200 forms of cancer, and many more subtypes. Each of these is caused by errors in DNA that cause cells to grow uncontrolled. Identifying the changes in each cancer’s complete set of DNA – its genome – and understanding how such changes interact to drive the disease will lay the foundation

Click here http://www.leukaemiacare.org.uk/resources/filter-by-resource-type/information-booklets information booklets for each different blood cancer. Click here http://www.leukaemiacare.org.uk/resources and you'll find lots of downloadable resources to help you whether you're a patient, carer, fundraiser

I lived in southern Utah in 1953-1954 during nuclear bomb testing by US government north of Las Vegas NV. All my family who lived with me are now deceased from cancer. US government has assistance program for those who developed cancer, but for some unknown reason exclude CLL. Maybe because there are

Hi. My name is Dianne and have had CLL for about 5 years. Thanks God no treatment needed yet. Unfortunately I also hace CLL in my linguial tonsils and just went for a check up yesterday to see how they are doing. Well I will be going for a biopsy on Monday as my doctor wants to confirm it is just the

If you follow CLLSA on Facebook or Twitter or listen to BBC Radio 4 – you may already know that award-winning investigative journalist Simon Cox this week aired a report on his quest for a cure for CLL following his diagnosis at the age of 37. If you missed it, you can catch it on http://www.bbc.co.uk

There's been considerable interest in the potential for gene editing for curing diseases such as CLL, so this article by Merlin Crossley, Deputy Vice-Chancellor Academic and Professor of Molecular Biology, UNSW should be of interest: https://theconversation.com/what-is-crispr-gene-editing-and-how-does-it-work

Webinar: Update on Lymphoma from the 2017 American Society of Hematology (ASH) Annual Meeting, which took place on January 23. It is now available on telephone replay 24 hours a day, 7 days a week. Just call 1-800-625-5288 and give the code #1151498 or click here http://click.icptrack.com/icp/relay.php

Hello my mother diagnosed with cll stage 4 with 17p deletion in December 2017. She is taking chlorambucil. But in the blood test lymphocytes are increased. Physician said her survival is only 1 year. I'm much worried. She also recommended ibrutinib. But very expensive. Actually I cannot afford. Shall

I am being investigated for Polycycthemia. I'm currently awaiting a nuclear cell mass test but my blood request says ' monitoring on chemotherapy , why is this on the request ? It also says old myeloid ?

I am taking 20 Hyperbaric Treatments in an effort to increase my body's ability to make blood platelets. Hyperbaric increases the number of stem cells in a person's body by 800%. I hope the stem cells can fix my bone marrow so I make more platelets. If this approach to ITP is successful I will let everyone

The Leukemia & Lymphoma Society http://www.lls.org/ has published an excellent audio cast on fatigue, that has a different perspective than many of the Patient Power and ONCLive videos on CLL & Fatigue and many suggestions of what we can do to improve our fatigue without pharmaceuticals: (LLS is a USA

Hello everyone, I’m a newbie here and looking for any information on the above title. I’ve recently been diagnosed with fibrotic hypersensitivity pneumonitis and am so worried about my condition. Any info on the condition or anyone who also has the condition please feel free to communicate with me.

Hi guys, I've not been here too much, I have been over on the liver pages. But I thought I would give you an update. So I have been waiting for transplant for 14 with no signs of it happening soon. My spleen is now literally taking over my body! Last scan it was 28cm, I saw one of my Heams last Wednesday

I am a long term MPN patient, Myoproliferative Neoplasm Essential Thrombocytosis JAK 2 mutation positive. I have taken Hydrea and aspirin for 14 months and have gained about 20 kilos in that short time. Has anyone else experienced this? Is it a side effect of the Hydrea. I take 500mg each day and my