International second opinion

[NewCll]

Hi there

Based in Ireland and looking to see if people have gone (maybe virtually) to other countries for second opinions. Nothing really wrong with care but have recently lost a family member after substandard cancer care here so has shaken me.

Would people have suggestions in US or UK maybe? and costs?

Also wondering if anyone has a excel checklist or the likes of yearly checks and tests we should be doing with CLL for other cancers - we have done a lot in first two years but want to keep on it

thanks

[Alex830]

No advice on getting a second appointment outside of Ireland. I do know the CLL society has some CLL specialists on their list which are located in Europe. CLL patients are more susceptible to skin cancers, a yearly checkup with a dermatologist is advisable. Shingles and pneumonia vaccines are recommended also besides the yearly flu shots.

[Deilginis]

There are some leading experts in UK. Your doc in Ireland should be happy to share your medical records and you probably won’t even need to travel if you don’t want to. It’s possible another pair of eyes may come up with a different perspective.

[Nucleusman]

US would cost you 10 times UK. Factor in bone marrow and blood tests etc not much change for £1,000? Would recommend my guy at Hammersmith hospital can give you name if you want might charge £250 for initial consultation

[ncosto]

Have you consulted with either of the CLL Specialists listed for Ireland on the CLL Society website? cllsociety.org/newly-diagno...

[neurodervish]

There was a spreadsheet download available on HU (courtesy of the late, great Chaya Venkat), which I've been using for over a decade to track my blood labs. It's much more than a checklist, because with CLL, it's not how high our numbers get, but how fast they get there. So tracking our disease progression over time on a spreadsheet is extremely useful. If you're not seeing a CLL specialist, I'd say the spreadsheet is essential. I'm seeing one, but am also a data nerd, so... 🤓

Some of the best parts of it are the helpful red triangles that can be clicked on for quick explanations on how various blood labs relate to CLL.

Here's the HU Tracking your blood test results link, but tbh, I've clicked all the links on the pg and could only find the “lite version” from the CLL Society. Maybe my brain is just not seeing it? Hopefully someone here (like AussieNeil ) can point you to it. healthunlocked.com/cllsuppo...

I've added a partial screenshot of my old Venkat spreadsheet so you can see a sample of a popup explanation.

Hope this helps

Screenshot from Venkat blood lab tracking spreadsheet for CLL