I am off to Australia tomorrow with our nonprofit CLL Society where I will be your unpaid in person reporter from the meeting.
I am also speaking at iwCLL 2015 on a panel with Dr. Michael Keating, Dr. Andrew Roberts, and others on the Funding Equation where we will discuss ways to improve access to our meds despite their expense. I am talking about the Canadian and American patient experience.
And despite greatly discouraging logistical difficulties, we have also organized a patient Q+A session in conjunction with the wonderful team at Lymphoma Australia in Sydney for patients that are coming from as far away as New Zealand. We should have video from the doctors attending: Drs. Wierda, Wiestner, and Trotman.
It’s a very very long trip, and much work, but I am excited about this amazing opportunity to go and to share what I learn firsthand with the gang here.
Let me know if you have any burning questions for the gathered experts.
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Would doctors tell you if you have CL and it's not causing issues ... What's issues with mis DX especially when other conditions can mask issues with blood cells platelets
There definitely are some doctors that do not tell their patients that they have a blood abnormality which they either know or presume is CLL - as some of our members can personally testify. The doctors may be under the perhaps mistaken belief that withholding that information from their patient is in their patient's best interest, and that quietly monitoring the patient's blood results is preferable to the very real distress the patient may experience being told that they have a cancer - particularly when there's a very good chance the patient may never need treatment. (This topic is actually worth a separate post.)
D3NIS, I appreciate that you feel that your doctors are holding back information about your health. You should have the right to have copies of all your medical test results and you can then use those results to independently investigate your health. There are definitive tests for many health conditions and you should be able to find a doctor where you can discuss whether particular tests are worth conducting for you and if deemed appropriate have specific tests, then discuss the result with your doctor or specialist.
As has been mentioned before, the definitive test for CLL and many other leukaemias/lymphomas is the Flow Cytometry Test.
Hi Aussieneil Cheers I defo think that to about doc's Gps . Am seeing my doc on 29 of this month re issues so will be sure to ask about that flow test given my abnormal blood cells.
Looking under microscope at my blood cells platelets is hard one to call some days the mega small and always loads of platelets and or fragmented ... In keeping with a deficiency.
Am undergoing a contrast ct scan of thorax abdomen pelvis for issues related to abdomen pain trouble ... think what was deciding factor in doing scan was pain and low vit D & that low Igm antibody stuff
Thanks Brian! Australia is a great place. I saw Michael Keating from a distance yesterday and met with Philip Thompson. Probably starting a Jakafi trial for fatigue. Looking forward to your reporting from down under. Would love to support your foundation again.
I am always excited, invigorated, and a bit nervous on these trips. If you can, please do support our nonprofit foundation, either with your energy or resources. At cllsociety.org there is a donate button in the top right corner. We need as much help as possible.
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