Dr Sharman's thoughts on the race for FDA Appr... - CLL Support

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Dr Sharman's thoughts on the race for FDA Approval for Obinituzumab, Ibrutinib and Idelalisib

AussieNeil profile image
AussieNeilAdministrator
7 Replies

Following Gilead's announcement regarding Idelalisib: healthunlocked.com/cllsuppo...

Dr Sharman summarises where things stand with Obinituzumab, Ibrutinib and Idelalisib and has written at length about the likely approval process

cll-nhl.com/2013/10/the-rac...

Dr Sharman is far from alone as he concludes "Can't wait to see how this all plays out"...

Neil

PS. Rainbow lorikeets love our figs, but as it will be a further 6 months before they ripen, today I caught this one snacking on a eucalypt tree

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Damms profile image
Damms

Oh Neil, I gotta comment on your lovely picture.

Here in DK fall is come and apples are plenty but parakit are only birds held in captivity and very exotic animals as well as figs (which almost always die during winter due to the snow and frost)

AussieNeil profile image
AussieNeilAdministrator in reply to Damms

Glad you liked the photo.

We are really blessed in Australia with our colourful and often intelligent birds (i.e. the parrot family). When I visited a zoo while overseas, I was wondering why the big crowd around a particular bird cage. On investigating, I found a very poor specimen of a galah. en.wikipedia.org/wiki/Galah You see them feeding on the roadsides here. They also love eating almonds; they carefully nibble off an end and extract the kernel. You might think you have a good almond crop, but the galahs have often eaten them just leaving the shells!

Did you get anywhere with your second opinion or getting access to your medical records?

Neil

Damms profile image
Damms

You certaintly have a wonderfull wild life :-)

I got access to my medical records (test results) but there where missing a lot of info. Info which I know excist.

I am waiting for reply from another doc, I hope he will see me but some how I doubt (they tend to be afraid of having another opinion then another doc).

If he will not see me I will contact a doctor in the UK (I have contact info on a doc which another "young" CLL patient have recomended).

Thanks for asking.

-Trine

AussieNeil profile image
AussieNeilAdministrator in reply to Damms

Sorry to hear that a closed medical society is preventing you from getting appropriate medical care. Unfortunately it doesn't just happen in Denmark.

I've also learnt the hard way that it is much easier to get a copy of test results at the time they are done than to try and get a copy some time later. I always ask for a copy for my records now.

I hope your plans work out OK and that you are able to get a second opinion from a trustworthy source. With a relatively rare disease like SLL/CLL that is so variable in how it progresses, it is definitely worth seeing someone that has experience with it.

Neil

PS Glad you liked the photo; it makes all the time I spent trying to get a good shot worthwhile.

Jomary8505 profile image
Jomary8505

Trine, I am so sorry to hear about your difficulty with getting info from your medical records. Hear in the US, we can request it but it's not really that easy sometimes. I also had difficulty getting information on my test results, so I realize how frustrating it can be. I'm not sure how medical care works in the UK but I hope this other doctor will see you. Please let us know how you make out.

Good Luck,

JoMary

PS: I agree with you on Australia . Seems like a beautiful place to live.

Kwenda profile image
Kwenda

Just for the record I copy the law for the UK.

' Under the Data Protection Act 1998, you have a legal right to apply for access to health information held about you. This includes your NHS or private health records held by a GP, optician or dentist, or by a hospital.

A health record contains information about your mental and physical health recorded by a healthcare professional as part of your care.

If you want to see your health records, you don't have to give a reason.'

see:- nhs.uk/chq/pages/1309.aspx?...

In practice I have a blood draw at the hospital and about a week later I go to my GP local doctors office and ask for a copy of these blood tests. I have never been charged and all the receptionist has to do is press print on her computer screen.

With my results in hand I can study them BEFORE I go to the oncologist / heamatologist appointment and thus be able to ask suitable questions.

If you get the results AT the appointment you are too busy absorbing these results to be able to ask the most intelligent questions.

Dick

AussieNeil profile image
AussieNeilAdministrator in reply to Kwenda

Good reminder about our rights Dick; it is similar (or should be) elsewhere.

I follow the same process as you in getting my results and for the same reason. No charge for a copy and the only inconvenience is the time taken to get the results and having to enter the surgery waiting room and the attendant risk of infection. The only hiccup in the process is that my doctor has to check and approve the results before I see them. If there's a wait, I go for a walk rather than risk exposure. I've had the occasional anxiety when ringing to confirm that the results are available (not a given), only to be told that the doctor has noted that my results are out of the ordinary for me, then having to wait before I can determine what has significantly changed. I generally know enough now to know if this needs discussing with my haematologist and if not, I can do some research before hand so I can better understand the answer at my appointment.

I find getting results AT the appointment results in my concentration being split in trying to both take in the results and what my specialist is saying about them. (Some special tests don't necessarily make it to my GP, so this has happened). Having reviewed them before hand means I'm on the same page as my specialist and we can save some time to get to what needs to be done if anything. I've also been given the privilege of being able to email my specialist before an appointment so I can raise any concerns. I include a plot showing the trend - that helps put any change into an overall perspective.

Neil

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