Firstly, I want to thank all of for sharing your experience and stories through this forum. I have been in the shadows reading and learning so much from all of you on and off for the past few months. I have felt a bit lost with some of the details regarding blood results and at times I feel a little confused. I need a specialist who can explain things in simple terms to me.
I was diagnosed with CLL in December 2014. I live in Perth Western Australia. Can anybody recommend a CLL specialist here in Perth. I have been seeing a haematologist on w + w and my 15 minute appointment is used up with him touching my neck for enlarged nodes and then he reads out my blood results. He is very reluctant to discuss or divulge information relating to this condition and his communication with me when I have asked questions about alternative or new therapy has been sarcastic and unprofessional. I often come away from my appointment feeling ignored and frustrated. I need to find a specialist on CLL someone who cares about the patient more than their pocket.
I hope someone is out there who is able to help me?
Written by
jewels777
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I'm in the U.S., so I don't think I can help directly.
I do have a specialist. My initial oncologist took a research job, and the new one is very terse when he doesn't feel like talking abut something. Yesterday I asked him about genetic markers, and he basically told me not to worry about genetics at this point.
Frustrating answer.
Find a CLL specialiast, but find one who is forthcoming.
I think some of these doctors are just very jaded.
From your earlier posts, you appear to be a USA resident, so perhaps you'll appreciate that for residents of Perth, Australia, it's about a 3,500 mile round trip by road, mostly across desert, to see a specialist in Adelaide. Think Hawaii or Alaska.
With respect to your physical examination by your specialist, bear in mind that pneumonia is a major cause of death if you have CLL, so checking your heart and lungs are fine makes perfect sense. My specialist also checks my weight is stable, does a physical examination of my nodes, spleen and liver for any change in size and asks how I have been going infection wise before looking at trends in my blood test results.
Not sure if you’ve found a new specialist but I am planning my return to Perth from UK and was previously under the care of Hollywood hospital. I have touched base with this specialist who specialises in CLL and is now based in Perth. Thought you might be interested.
Dr Cheah is a Haematologist and Clinical Researcher practising at Hollywood Private and Sir Charles Gairdner Hospitals. He graduated from the University of Western Australia and completed post-graduate training at Fremantle Hospital and Peter MacCallum Cancer Centre (Melbourne). He then completed fellowships in translational research at Peter MacCallum Cancer Centre and an Advanced Fellowship in Lymphoma at the world’s premier cancer institution, MD Anderson Cancer Center (Houston, Texas, USA).
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