Re: UK CRITERIA FOR FISH TESTING

[Guest guest]

I am from the UK and also insured by BUPA.  I can

tell you that BUPA has paid for ALL of my prognostic tests (FISH and Mutation

status) on more than one occasion now.  There is one NHS lab in the UK that offers

its services to other consultants/patients and their prices are:

VH gene = £156

ZAP 70 = No charge when VH gene test

performed

CD38 = £42

Karyotype = £73

P53 & ATM Fish = £115

I also understand that you do require a

White cell count of greater than 5 for these tests to be performed.

I am also of the opinion that all patients

should have these test performed and most certainly before any treatment.

Regards

robert@...

www.charitydalek.co.uk

From: [mailto: ] On Behalf Of exrsoles

Sent: 08 February 2009 08:34

Subject: UK CRITERIA FOR

FISH TESTING

I should be grateful for advice on Fish prognostic

testing here in the UK.

My Haematologist tells me that it is not necessary until active

treatment is started. I find this very hard to understand having read

all about CLL for a year and a half.

He tells me that there has to be a minimum, but unstated, absolute

lymphocyte count for FISH to be carried out. The testing can be

carried out at low absolute lymphocyte counts, but that would be very

labour intensive and very expensive. Costs of about £260 for normal

FISH and £530 for FISH testing with a low absolute lymphocyte count

were quoted.

I was further told, by the Haematologist, that my insurers BUPA would

not pay for it.

I really do feel that every CLL patient should have all the prognostic

markers carried out if they wish to know that information, as I do.

I cannot find any criteria for FISH and other prognostic testing in

the literature. Any help on this issue would be most appreciated.

exrsoles

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[Guest guest]

On 2/8/09, exrsoles wrote:

" I cannot find any criteria for FISH and other prognostic testing in

the literature. Any help on this issue would be most appreciated. "

***

Hello exrsoles,

You may find this useful, from the ACOR CLL " Professors' Posts " :

http://cll.acor.org/Professors%27%20posts.htm

Also, the updated guidelines for CLL treatment, in a US journal, may be useful:

Hallek et al., " Guidelines for the Diagnosis and Treatment of Chronic

Lymphocytic Leukemia: A Report from the International Workshop on CLL Updating

the National Cancer Institute-Working Group 1996 Guidelines, " Blood, American

Society of Hematology, revised and corrected 12/08.

It includes criteria for various CLL tests.

If you would like a free copy of the article, please let me know and I can send

it to you as an e-mail attachment. I have permission from the publisher to

distribute to CLL patients.

Ron Goldsmith

Albuquerque, New Mexico USA

[Guest guest]

I am also from the UK and had all my prognostic markers done, FISH on the NHS, my GP spoke to the haematologist and he ordered it, that was some 6 years ago, all my other test later on were paid my insurers.

My understanding from what I have learn going to conferences is that test must always be done before treatment, but also if the patient ask for the test, they should be done.

Exrsoles, you said you are with BUPA, I am sure your insurers would cover the cost, but a haematologist or a GP has to ask for them for the insurer to pay for, I had lots of things done in my early days that the then heamatologist consultant did not agreed, so we bypassed him and my GP did all the referals for the insurers to cover the test.

I hope this helps, contact me in private if you need more info.

regards

Chonette (UK)www.cllsupport.org.uk

dx 10-02 (aged 57)unmutated, CD38 19%, ZAP70 9%,2004 Prednisolone 8 weeks 50 mg. a day,2005 Prednisolone 8 weeks 50 mg.a day, followed bylow doses chlorambucil (2 mg.),2006 Rituximab and low doses chlorambucil (6 mg. a day 14 days on 14 daysoff) 6 rounds,2007 Low doses Rituximab,2007 Fluradabine Lite, HDMP,. Rituximab 200 mg. monthly (5 rounds)Partial Remission, multiple pea size nodes on neck,Started 16 week Campath/HDMP Protocol in June 2008, to follow SCTCMV activation plus two other infections end week 8th of Campath.Hopitalised for 4 weeks. 2 months gap to allow body to recoverDec 2008 - HDMP to reduce nodes, bone marrow clean - no more Campath neededAdmited at the Royal Free on March 1st, SCT March 11, 2009

[Guest guest]

I am having problems with my outlook express and could not send this

post yesterday, and today I could not find edu group,

maybe my brain is not working however here is my two cents of info

rfelated to FISH testing.

regards

Chonette

I am also from the UK and had all my prognostic markers done, FISH on

the NHS, my GP spoke to the haematologist and he ordered it, that was

some 6 years ago, all my other test later on were paid my insurers.

My understanding from what I have learn going to conferences is that

test must always be done before treatment, but also if the patient

ask for the test, they should be done.

Exrsoles, you said you are with BUPA, I am sure your insurers would

cover the cost, but a haematologist or a GP has to ask for them for

the insurer to pay for, I had lots of things done in my early days

that the then heamatologist consultant did not agreed, so we bypassed

him and my GP did all the referals for the insurers to cover the test.

I hope this helps, contact me in private if you need more info.

regards

Chonette (UK)

www.cllsupport.org.uk

dx 10-02 (aged 57)

unmutated, CD38 19%, ZAP70 9%,

2004 Prednisolone 8 weeks 50 mg. a day,

2005 Prednisolone 8 weeks 50 mg.a day, followed by

low doses chlorambucil (2 mg.),

2006 Rituximab and low doses chlorambucil (6 mg. a day 14 days on 14

days

off) 6 rounds,

2007 Low doses Rituximab,

2007 Fluradabine Lite, HDMP,. Rituximab 200 mg. monthly (5 rounds)

Partial Remission, multiple pea size nodes on neck,

Started 16 week Campath/HDMP Protocol in June 2008, to follow SCT

CMV activation plus two other infections end week 8th of Campath.

Hopitalised for 4 weeks. 2 months gap to allow body to recover

Dec 2008 - HDMP to reduce nodes, bone marrow clean - no more Campath

needed

Admited at the Royal Free on March 1st, SCT March 11, 2009

[Guest guest]

Hi Chonette,

Thanks for your messages and the information.

I have now got BUPA to pay for the tests, by passing the Consultant. You really

do have to push for what you feel should be done!

Again my thanks.

Hugh

Chonette <chonette@...> wrote :

> I am having problems with my outlook express and could not send this

> post yesterday, and today I could not find edu group,

> maybe my brain is not working however here is my two cents of info

> rfelated to FISH testing.

> regards

> Chonette

>

> I am also from the UK and had all my prognostic markers done, FISH on

> the NHS, my GP spoke to the haematologist and he ordered it, that was

> some 6 years ago, all my other test later on were paid my insurers.

> My understanding from what I have learn going to conferences is that

> test must always be done before treatment, but also if the patient

> ask for the test, they should be done.

> Exrsoles, you said you are with BUPA, I am sure your insurers would

> cover the cost, but a haematologist or a GP has to ask for them for

> the insurer to pay for, I had lots of things done in my early days

> that the then heamatologist consultant did not agreed, so we bypassed

> him and my GP did all the referals for the insurers to cover the test.

> I hope this helps, contact me in private if you need more info.

> regards

> Chonette (UK)

> www.cllsupport.org.uk

>

>

> dx 10-02 (aged 57)

> unmutated, CD38 19%, ZAP70 9%,

> 2004 Prednisolone 8 weeks 50 mg. a day,

> 2005 Prednisolone 8 weeks 50 mg.a day, followed by

> low doses chlorambucil (2 mg.),

> 2006 Rituximab and low doses chlorambucil (6 mg. a day 14 days on 14

> days

> off) 6 rounds,

> 2007 Low doses Rituximab,

> 2007 Fluradabine Lite, HDMP,. Rituximab 200 mg. monthly (5 rounds)

> Partial Remission, multiple pea size nodes on neck,

> Started 16 week Campath/HDMP Protocol in June 2008, to follow SCT

> CMV activation plus two other infections end week 8th of Campath.

> Hopitalised for 4 weeks. 2 months gap to allow body to recover

> Dec 2008 - HDMP to reduce nodes, bone marrow clean - no more Campath

> needed

> Admited at the Royal Free on March 1st, SCT March 11, 2009

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Would you be able to send me as an E-mail attachment "Guidelines for Diagnosis and Treatment of CLL? Thank you very much.Connie Hoppe Re: UK CRITERIA FOR FISH TESTING > On 2/8/09, exrsoles wrote:> > "I cannot find any criteria for FISH and other prognostic > testing in> the literature. Any help on this issue would be most appreciated."> > ***> > Hello exrsoles,> > You may find this useful, from the ACOR CLL "Professors' Posts":> > http://cll.acor.org/Professors%27%20posts.htm> > Also, the updated guidelines for CLL treatment, in a US journal, > may be useful:> Hallek et al., "Guidelines for the Diagnosis and Treatment of > Chronic Lymphocytic Leukemia: A Report from the International > Workshop on CLL Updating the National Cancer Institute-Working > Group 1996 Guidelines," Blood, American Society of Hematology, > revised and corrected 12/08.> > It includes criteria for various CLL tests. > > If you would like a free copy of the article, please let me know > and I can send it to you as an e-mail attachment. I have > permission from the publisher to distribute to CLL patients.> > Ron Goldsmith> Albuquerque, New Mexico USA> > > > > > > > >

[Guest guest]

Connie

This might be what you are after.

www.ukcllforum.org.uk/ukcllguide.pdf

or

www.ukcllforum.org.uk/Hallek_et_al.pdf

Regards

From:

[mailto: ] On Behalf Of conknee51@...

Sent: 05 March 2009 14:31

Subject: Re: Re: UK CRITERIA FOR

FISH TESTING

Would you

be able to send me as an E-mail attachment " Guidelines for Diagnosis and

Treatment of CLL? Thank you very much.

Connie Hoppe

Re: UK

CRITERIA FOR FISH TESTING

> On 2/8/09, exrsoles wrote:

>

> " I cannot find any criteria for FISH and other prognostic

> testing in

> the literature. Any help on this issue would be most appreciated. "

>

> ***

>

> Hello exrsoles,

>

> You may find this useful, from the ACOR CLL " Professors' Posts " :

>

> http://cll.acor.org/Professors%27%20posts.htm

>

> Also, the updated guidelines for CLL treatment, in a US journal,

> may be useful:

> Hallek et al., " Guidelines for the Diagnosis and Treatment of

> Chronic Lymphocytic Leukemia: A Report from the International

> Workshop on CLL Updating the National Cancer Institute-Working

> Group 1996 Guidelines, " Blood, American Society of Hematology,

> revised and corrected 12/08.

>

> It includes criteria for various CLL tests.

>

> If you would like a free copy of the article, please let me know

> and I can send it to you as an e-mail attachment. I have

> permission from the publisher to distribute to CLL patients.

>

> Ron Goldsmith

> Albuquerque, New Mexico USA

>

>

>

>

>

>

>

>

>

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[Guest guest]

Sorry, subject line is misleading. The article I have permission to distribute

to CLL patients is from BLOOD Journal (US) and contains information on criteria

for various tests, including FISH. The corrected version is not yet available

online to my knowledge, but I can send it as an e-mail attachment:

> Hallek et al., " Guidelines for the Diagnosis and Treatment of

> Chronic Lymphocytic Leukemia: A Report from the International

> Workshop on CLL Updating the National Cancer Institute-Working

> Group 1996 Guidelines, " Blood, American Society of Hematology,

> revised and corrected 12/08.

If you would like a copy of this article, please let me know privately at:

rongoldsmith@...

It is not specific to UK but may be helpful.

The article that referred to is from British J of Haematology (2004) and

available on line at:

www.ukcllforum.org.uk/ukcllguide.pdf

It may be more relevant to CLL patients in UK. It would be interesting to

compare the two articles.

Ron Goldsmith

Albuquerque, New Mexico USA