UK CLL Forum, UKCLLFORUM

How to get Prognostic Tests done

Topic Made On: Jan 21, 2008 04:38pm
Gillian

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Hello all. My profile (shortly to be published!) says where I'm at with getting the tests done. Does anyone know if it possible to get the tests carried independantly and how much it would cost if you can't get your specialist to arrange it for you? I'm sure I read somewhere that you can send off blood samples to Dr Hamblin's lab. But now I wonder if I dreamt it. I get a bit lost with all the info on all the sites. Help!

I look forward to getting to know you all at the forum.

Gillian




Replied On: Jan 21, 2008 07:08pm
Robert Cork

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Gillian

No you didn't dream it, Professor Hamblin is the contact man for arranging the Prognostic Marker Tests to be performed at the Royal Bournemouth Hospital.

I did have the break down of the cost, but I am unable to find the detail at the moment. So for the IgVH genes (including ZAP 70)the full range of Fluorescence in-situ Hybridization (FISH) and I think a CD38 was about 300.

The process is fairly straight foward (i) obtain a blood sample (specific test tubes to be used)(ii) send to the Royal Bournemouth Hospital (iii) the results should be available in about 4 weeks.

Regards

Robert



Replied On: Jan 21, 2008 07:20pm
Robert Cork

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Ok I just found the details:

A ten cc blood sample must be collected in lithium heparin anticoagulant and sent by courier to Dr R Ibbotson, Department of Molecular Biology, Royal Bournemouth Hospital, Castle Lane East, Bournemouth, BH7 7DW, England. The sample should arrive within 48 hours of withdrawl. Care should be raken that it arrives during the working week ie Monday to Friday.

The prices are VH genes 156, CD38 42, FISH for del 17p and del11q 115. If you want a full karyotype as well as FISH it costs another 73.

Regards

Robert



Replied On: Jan 21, 2008 09:38pm
dorsetbabe

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Hi there- I am interested to read about these tests as I am just trying to decide whether to ask for them to be carried out or not.I don't know if they would be available to me on the NHS yet.I wondered what 'a full karotype'means? Also what you think are the advantages of having these prognostic tests done as opposed to'ignorance is bliss'!
I was diagnosed with early CLL in Sept and am still getting my head round this 'new normal' and I'm trying to find out as much as possible.
Thank you...Margaret.



Replied On: Jan 22, 2008 12:00pm
andysnat

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Gget that email off to Prof H asap. He is going off to the USA this week, for a few days.

He can probably access his email while away (I'm guessing) but bear this in mind.

Andy




Replied On: Jan 22, 2008 12:29pm
Robert Cork

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I think the knowledge of these Prognostic Test depend upon the type of individual that you are. Myself I want to know as must as possible, therefore I use this information to shape my treatment choices. I will probably embark on treatment again this year and will have a FISH, CD38 and DISC ASSY completed prior to me taking any drugs. Why these, (i) the FISH to make sure I do not have a 17p deletion, (ii) the CD38 just so that I know that I am still in the Good Treatment Bucket and the (iii)the Disc Assy so as I know what drugs I am going to be sensitive to.

BTW, I would not repeat the gene test IgVH as this does not change.

Regards

Robert



Replied On: Jan 22, 2008 12:48pm
Robert Cork

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In answer to Margaret

These tests are available on the NHS, but (i) you may need to go to a specialised treatment centre or (ii) have to really work on your Consultant to get them done. They are also available on a private basis.

Regards

Robert



Replied On: Jan 22, 2008 01:35pm
dorsetbabe

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Thanks for your swift reply Robert!Is a 'full karyotype'a more extensive FISH testing for chromosome deletions other than 17p and 11q, +Trisomy 12? Are the prognostic tests usually carried out before a patient embarks on treatment? My curiosity is simmering away wanting to know all I can-but still with trepidation incase my markers come back bad!I'm under Poole Hosp and the haematologists there can use the testing facilities at Royal Bournemouth,which is where Prof.Hamblin is based.
Thanks again...Margaret.



Replied On: Jan 22, 2008 02:16pm
Gillian

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Thanks for the detail Robert. Do I have to go through my local haem/onc at the hospital or can my GP arrange it? Will the hospital lab arrange the courier? I still don't know if Birmingham actually carried out the testing and I guess I need to contact them first (see my profile). I suppose I feel like I don't want to 'go behind my doctor's back' when it's them I have to see and who may end up treating me. I'm feeling a bit sensitive after yesterdays blood results.

Does the same system apply to the Disc Assay?

Margaret - I fully understand how you feel about this. That's why I never chased up the results from Birmingham before. One day I need to know and the next I really don't want to. I'm still up and down about it and thinking maybe I'll wait for my next results in a month. I want to be in a position to act if I need to get them done in Bournemouth.

I'm so glad we have this forum - kindest regards to you all. Gillian



Replied On: Jan 22, 2008 05:14pm
Robert Cork

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Margaret

In answer to your questions.

I have always been educated, by my last 2 Haematologists, to have my Prognostic Markers checked prior to undertaking treatment. An example is, you undertaken 6 months of treatment with say Fludarabine only to find that the treatment has not worked because you have a 17 p deletion. A waste of 6 months and unnecessary damage to your immune system.

I would imagine that in view of the close proximity of Bournemouth to Poole then you would be able to convince your Haematologist that this is a good idea. I also believe that there are some strong links between the Haematology departments of Poole and Bournemouth.

FISH is looking for deletions on certain chromosomes e.g 17p, 11q, 13q and Trisomy 12 are the normal ones looked for.

Karyotype or Immunophenotyping is checking that you are a bona fide CLL patient. Sometimes patients are misdiagnosed due to the close proximity of the CD markers (Mantle Cell Lymphoma (MCL) or Splenic Lymphoma or Follicular lymphoma). The definition for a CLL patient is: CD5+, CD19+, CD20 weak+, surface Ig weak +, CD22 neg, CD23+, CD79b neg or weak +, FMC7 neg. But there can be slight variants of this, I believe it varies on what the lab can test for.

Regards

Robert



Replied On: Jan 22, 2008 05:24pm
Robert Cork

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Gillian

I only know the process for the Bournemouth Hospital where the patient has to arrange postage. A normal Jiffy bag and a 24 hour postage service would normally be sufficient. The cost of this would be less that 2.00.

I think it would be appropriate to mention this to your doctor first and maybe he/she could approach your Haematologist. However, if you have a good relationship with the Haematologist then this might be the best route. There is no one rule for everyone's specific circumstances.

Are you a patient of the Birmingham Heartlands Hospital?

Regards

Robert



Replied On: Jan 22, 2008 08:28pm
ronnie

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I wonder if this is something private health care such as Bupa covers. I am guessing not as its tests and not treatment.
Would the correct process be
1 speak to your GP and ask if he can organise testing
2 - when he says no its not done on NHS or that you need to ask your consultant (who has already said no in the early days cos its not normally done on NHS) ask if it could be done privately

Exactly what tests do you need to ask to be done for cllear prognostic indicators?

I am 1 year diagnosed and not due back for consult till Sept this year.
I beleive i would benefit from knowing my prognosis.

Thanks

ps - this forum seems to much livlier than the previous one! Well done all for reserecting it
Ronnie



Replied On: Jan 23, 2008 08:34am
sonia

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Gillian, who do you see in B'ham? That's where I'm based.
Sonia



Replied On: Jan 23, 2008 09:24am
Robert Cork

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Ronnie

From personal experience I have found that both BUPA and PPP have covered ALL of my specialised tests, no problems at all.

Maybe the following table might help in putting ALL of these prognostic indicators into perspective.

I believe the main prognostic indicators we are talking about here are: IgVH, CD38 and FISH.



Regards

Robert



Replied On: Jan 23, 2008 09:33am
dorsetbabe

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Thanks for your help with this Robert. This table is most useful and I think I have moved closer towards making my decision whether to have these tests done or not!I'm finding the forum most informative-I'm glad that its been set up for us- well done!! Thank you...Margaret.



Replied On: Jan 23, 2008 03:32pm
Gillian

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Robert / Sonia, I am based in East Midlands and see a local haem/onc there. However, he does consult Birmingham Heartlands about me. I have only been there once, to see Dr Milligan who is a CLL Expert. Dr Milligan agreed to the prognostic tests on the NHS, took the samples and said the results would take 3 to 4 months as they run them in batches. That was last Februaury and I haven't heard from them since. My local haem/onc is very dismissive of prognostic testing and is rather good at dodging questions about them. That was why I insisted on seeing Dr Milligan in the first place. I am seriously thinking of transferring my routine care to another hospital but that should probably be a separate topic! Heartlands is quite a difficult journey for me but may be worth it in the long run. Sonia, are you a patient of Dr Milligan?

Thanks to everyone for joining in on this. Gillian




Replied On: Jan 23, 2008 06:16pm
triciagardom

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Prognostic Testing
My initial tests were done at a Birmingham hospital that does not do the test for IgVH gene mutation, only ZAP70. Following chemotherapy for another cancer I needed my prognostic tests re-done. I used the remote service at Bournemouth Hospital via Dr Hamblin and Rachel Ibbotson and paid for this because having decided that wanted as much information as possible on my condition I wanted it done quickly. The service was excellent and the results review with Dr Hamblin extremely helpful. My profile from Bournemouth is completely different to the earlier one from Birmingham - this could be a result of the chemotherapy, or different laboratory procedures, or simply disease progression. Either way I wanted to know so that I had a better handle on my options and would be better placed to discuss treatments when the time came. My GP was very cooperative with my approach and this has helped our relationship too.
Discovering that my prognostic markers were not good was not easy but personally I prefer to know and can direct my research into treatments more accurately. I hope that you find these comments helpful.



Replied On: Jan 23, 2008 06:33pm
adef

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A personal story:At diagnosis in April 2005 my prognostic markers were all suggestive of indolence. They were done by the Leicester Centre - which is one of the centres recommended by the forum - without me having to ask.However within a year I was treated with Fludarabine and Cyclo because of rapidly enlarging nodes in my neck.Following discussions with medical advisors and exploration of the CLLtopics website at http://www.clltopics.org/index.php I have learned this about indolent disease:

- indicators based on population studies may not accurately predict an individual disease history or progression
- a great many other factors many of which are unknown also contribute to disease progression and prognosis
- some of the indicators change with time and may change with treatment
- as we usually do not know how long the disease has been active at the time of describing the risk factors we can't estimate how likely it is that further significant changes have also already occurred

So I have come to understand that it is not an exact science and that careful observation of my personal disease process is as important - and may be more important - than reliance upon 'tests'.

In Leicester I was routinely sent a copy of the letter to my GP.I knew what my indicators were and how my counts were changing.At my current centre - also a centre of 'excellence'- this does not happen despite repeat requests.So I have also learned that my personal relationship with my physician is important and the ground rules need to be negotiated.I would hope that this is possible for everyone with 'Choose and Book'.Your GP should know.

Ade



Replied On: Jan 24, 2008 09:26am
sonia

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Hi Gillian,
No, I'm a patient of Prof. Moss at the Queen Elizabeth in Birmingham. I'm sorry you feel unsupported by your Dr. it's probably worth swapping docs if only for peace of mind. Prof has always been ready to discuss any research that I've been interested in and recently persuaded my PCT to pay for Rituximab for me, which is by no means standard treatment in the UK.

As far as prognostic tests go I think the FISH is imperative for treatment purposes, but as someone who's had every test going, IgVH, CD38 and Zap70, I think you have to be very sure about why you want the information and how you're going to feel if they're all bad.

In my case the results were contradictory, mutated IgVH and Zap70 +ve so I'm no clearer, but on bad days I imagine that Zap70 is the more accurate, on good days the IgVH. The experts still don't know which is the case!

All the best
Sonia



Replied On: Jan 24, 2008 02:00pm
Robert Cork

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Sonia

I suspect that many of us might be interested in how your PCT were persuaded to pay for Rituxan. Any thing you can let us know?

Robert



Replied On: Jan 24, 2008 02:02pm
Robert Cork

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Ade makes a number of interesting points which I would agree with.

Prognostic Markers are not an exact science and that the results are based on a population and therefore, not all of us will follow general trend. I have also a similar story to that of Ade, in that I have good markers (Mutated, CD38 neg and no deletions), but I have received treatment on 2 occasions in the last 7 years since diagnosis.

Has the results of my Prognostic tests affected the choice of treatments that I have undertaken? Yes they have. I have kept my chemo choices light, leaving the bigger guns for later in life. Has this prolonged my survival? I believe it has. I have certainly exceeded the original projection that was given to me when I was diagnosed.

The results of these Prognostic Tests are just a piece of the jigsaw puzzle, they are no substitute to how you feel or the results of routine blood tests or the experience of your Haematologist or what you want to do as a patient.

In summary, Prognostic Markers give you an overview of your current situation (rather like a finical review), from this you can make intuitive choices as to what you should do next.

Just to note, IgVH does not change throughout the course of your CLL, but CD38 and FISH do change as a result of treatment.

Regards

Robert



Replied On: Jan 24, 2008 02:45pm
sonia

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Hi Robert
I'm afraid I didn't see the submission, my haem hinted that it might have been due to the panel thinking that it was actually a lymphoma, (which is a much better candidate for PCT funding)I'm not sure whether the application was worded in such a way as to assist them in this misunderstanding!

I can't help but think that when the german cll study group report on cll8 later this year that FCR will become standard treatment, but maybe I'm an optimist!
Sonia



Replied On: Jan 24, 2008 09:34pm
dorsetbabe

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Thanks to everyone for the interesting posts,they've been most helpful.I must say that I didn't realise that some of the markers might change with time although I had grasped that every patient's CLL is very much individual.I was assuming that if you were lucky enough to have all good markers,then the disease would hopefully stay slow moving and if the markers came back poor,it would be a sound idea to book the long trip abroad sooner rather than later!
Margaret.



Replied On: Jan 28, 2008 01:05pm
dorsetbabe

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Just in case this might be of interest to others>> I have just had the bloodtest done for the prognostic markers. I was able to have it done on the NHS-my Onc Doc gave me the request form and they drew 4 vials of blood,I think it was 2 green heparin and 2 purple.They were sent from Poole hospital over to Royal Bournemouth for analysing and all I have to do is try and forget about it until those dreaded results are back!Thanks again to all who have posted their experiences,they were very helpful!
The Best of Health to you all....Margaret.



Replied On: Jan 30, 2008 03:22pm


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Some may be interested in this from Prof Dyer's recent article on the Lymphoma forum:

'The only prognostic marker that affects the choice of therapy is deletion of the TP53 gene on chromosome 17p13.'

The rest of the article makes clear reading too:

http://www.lymphomaforum.org.uk/forum/article.php?id=154

Ade






Replied On: Mar 07, 2008 01:50pm
Robert Cork

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It was some weeks ago that some members decided to get their Prognostic Markers checked. I was just wondering if anyone had followed this through and actually had the blood draw, sent it to Bournemouth and obtained their results.

Regards

Robert



Replied On: Mar 07, 2008 05:26pm
dorsetbabe

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I was able to have the prognostic tests done on the NHS at Royal Bournemouth Hospital-luckily I'm attending for check-ups at neighbouring Poole Hospital and they can use the testing facilities at RBH.The results took 4 weeks to come back and they were all good>> mutated,CD38- and no deletions.ZAP70 wasn't performed,apparantly it isn't reliable.
Good luck to others who are going to 'take the plunge'!
Margaret.



Replied On: Mar 08, 2008 12:57pm
Gillian

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Margaret, I'm so pleased to hear your good results. I haven't yet tried again for the tests as I'm waiting for an appointment with another CLL Expert who I'm hoping will do them for me locally. I never did get the results of the tests I had done over a year ago and have lost faith. Hence trying to change doctors and centres. If I get nowhere, I've still got the Bournemouth option. Gillian



Replied On: Mar 08, 2008 05:42pm
dorsetbabe

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Gillian- My Onc Doc was surprisingly scathing about the prog.tests- his opinion was that although I am lucky and my markers turned out to be great,it doesn't alter that CLL can be unpredictable and that its a 'risk' having them done incase they give poor results.I think that only the mutated status won't change.I felt that I couldn't rest,though,until I knew all there was to know!There's an excellent article on the Professors'Posts by Terry Hamblin.
http://cll.acor.org/pp%20-%20prognostic%20test.htm
I hope this link works for you! All the best...Margaret.



Replied On: Nov 12, 2008 05:37pm
ronnie

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I had the prognostic testing done on the NHS by Royal Marsden. I wish I hadnt because the results are not what I expected and it will affect how I feel about this mentally. So if you are looking to get them done, then you must also be aware you might not get the news you are looking for.
My results were as folows -(from a printout Dr Dearden gave me)
Lymphocyte count still staeady at 31 so thats ok;
Fish showed that 73-83% of the cells scored had a loss of 13q14 signal and an aTM (11q22)signal - indicator of a relatively poor prognosis;
IGVH is unmutated so again not good;
CD38 less than 20% and B2m below 2 which are more positive.

So all in all I am abit shellshocked by it especially when I read median survival times. However Dr Dearden did try to tell me that the IGVH was just a gene characterising my condition and that the other factors could go anywhere from good to bad as time progresses. Fortunately I feel well and have only very minimal lymph node enlargement in my neck and the ALC is steady.
But i do feel negative now and can only hope that I can buck the trend of the average.

All the best Ronnie



Replied On: Nov 13, 2008 09:03am
Robert Cork

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Ronnie

I am so sorry to hear that your prognostic indicators were not as you hoped. I believe you realise that these are just indicators and that not all patients follow the general trends. Myself for example, I have good indicators, but have received 3 different courses of treatment over the last 8 years, the latest being aggressive. We are all specific and unique individuals.

My best wishes to you.

Regards

Robert



Replied On: Nov 13, 2008 07:39pm
adef

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Dear Ronnie,

I have found that my reactions to unwanted news can be as disruptive to life as the implications of the news itself - you have probably found this out already. Knowing what to expect from myself as a response has helped me talk more openly with carers and friends.The Macmillan site has some information that I find helpful and I hope you do too if you havn't seen it already.

http://www.cancerbackup.org.uk/Resourcessupport/Relationshipscommunication/Emotionaleffects/Beingpositive

Best regards,

Adrian



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