Diagnosed with ALL, B Cell, Ph-ve

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So it's been a whirlwind 6 days since going to see my GP to find out why I have been losing fitness and feeling like rubbish, and then finding out that I have leukaemia and being rushed to hospital. I'm 40m and have always been pretty healthy so it really came as quite a shock, but acceptance has sunk in. The hardest thing atm is having my wife only being able to visit for 1 hour per day and 2 young kids at home who I can't see at all ( But yay for technology!). Both of our families live overseas but it looks like my parents will be here by the weekend, so hopefully that allays some of my worries about home life.
I've been recommended for the ALL-06 plan which looks similar to the 10403 regimen, of doing an initial 33 day Induction in hospital, then a 29 day consolidation phase as an outpatient. I'm currently at Day 5 which is an initial phase of prednisone and a small dose of methatrexate in the spine. I'm feeling OK, the proper chemotherapy starts Day 8.
I'm really trying to keep a positive mindset and reading through the posts on here has been a great help (Thanks everyone!). I like all of the advice like mouthwash, toilet paper, that sorta stuff. So any support, advice, terrible Dad Jokes or anything with good vibes is really kindly appreciated. If there is anything specific to Sydney that would be great as well, no idea if there are family support groups or anything like that.
Stay Awesome!

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The National Comprehensive Cancer Network (NCCN) produces Clinical Practice Guidelines in Oncology for most cancers, which many doctors follow. Their guidelines are among the most comprehensive and most frequently updated clinical practice guidelines available in any area of medicine. These guidelines will provide you with helpful information about your diagnosis to discuss with your doctor.

Your doctor will let you know how often you need physical exams and blood tests to check your blood cell counts. Your oncologist will screen you for cancer recurrence and the development of a secondary cancer. This may include bone marrow tests to detect cancerous cells. As time goes by, your doctor may suggest longer periods between visits.

Coordination between your oncologist and primary care physician is essential for you to get the best care possible. Some treatment centers feature survivorship or follow-up cancer care clinics (see below), which provide a comprehensive, multidisciplinary approach for monitoring and supporting cancer survivors.

For each follow-up visit:

Track each visit and write down what was discussed.
Ask your doctor if and why certain tests are being done and what to expect.
Discuss test results with your doctor.
Ask for and keep copies of lab reports in a file folder or binder.
Organize the reports in date order
Find out if and when follow-up tests are needed.
Mark upcoming appointments on your calendar
Your doctors will let you know how often you need to see them for physical exams and blood or bone marrow tests.

Medical follow-up care gives doctors the chance to:
Monitor your disease response to current or past treatments over a period of time
Identify any recurrence of the disease
Detect long-term or late effects

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Les intervenants du forum

Camille Flavigny
Chargée de mission Droits des personnes
Dr A.Marceau
Médecin, chargé des questions médicales
Conseiller technique Aidea
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