Would like CLL Specialist in BC - Private pay for IGHV?

Hi diagnosed Jan 2015 on w and w, numbers moving up but didn't double in the year I'm wondering if anyone knows a CLL Specialist in British Columbia Canada as I can't find one in dr. Registry. And I have read the CLL patients should have CLL Specialist Also I would like to have the IGHV test done, my heamatologist won't do it, I'm prepared to pay privately but don't know where to start. If anyone know where to go in Vancouver, B.C. area

Thanks for any ideas - Thanks everyone I find this group fantastic, supportive, knowledgeable and give me a feeling I'm not alone 👍😍

22 Replies

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  • We are also from Canada and had it done with Cancer Genetics Inc from New Jersey. The IGVH mutational status test cost $ 600.00 US.

  • Hi

    Thanks for the info - will try Washington state for genetic company.

  • Get a referal the BCCA in Vancouver, Dr. Laurie Sehn and Dr. Cindy Toze among others on their teams are both CLL specialists... Dr. Wendy Lam and Dr. Simon Yu know CLL well, they are in Burnaby Hospital.

    IGHV direct mutation test are not funded in BC or anywhere in Canada outside a clinical trial, but I have heard patients go to Fred Hutch and have it run... you pay out of pocket.

    Clinically in Canada mutation surrogates CD38 and sometimes Zap70 are used... direct testing is being discussed, but no decisions have been made yet in this area.

    ~chris

  • Thank you for the detailed info. I will keep this info as I was referred to a hematologist and not BCCA, but will request a second consult as time goes on. I will look up Fred Hutch as I have never heard of them. I am quite happy to pay just need to know as much as I can.

    Thanks again

  • Fred Hutchinson CC Seattle... world leader in CLL transplants and CAR T clinical trials

    fredhutch.org/en/diseases/l...

  • Hi. Thanks Will contact them Found their number etc on net. Thanks again

  • Hi: Dr. Toze is a transplant specialist and not a CLL specialist. I would recommend a referral to Dr. A. Gerry within the BCCA for a second opinion. She is one of the the brightest stars there and administers the trials. I have heard Dr. Sehn is good but do not have any experience with her. I have seen both Toze and Gerry.

  • Yes.. primarily transplants ...but she knows CLL...

    hematology.med.ubc.ca/facul...

  • She may "know" CLL but it's not her specialty. Her specialty is treating lymphoid cancers including CLL with transplants. leukemiabmtprogram.org/gene...

  • Hi. Thank you for your recommendations. I really appreciate everyone's input and so fast. Great to know you have seen these drs yourself.

    Have you had any treatment yet?

    If so what and why if you don't mind sharing?

    Thank you again

    Barb

  • Hi:

    I was diagnosed in 2008 and have not been treated yet. However it is imminent as my numbers are doubling in less than 6 mos and have large nodes. My specialist is Dr. A. Yee in Victoria who is very good. I saw both Dr. Toze and Dr. Gerry. I would recommend getting to see Dr. Gerry. Dr. Toze's main interest is in transplants and based on how things are developing I would rule out a transplant unless all else fails. My doc is recommending FR because he says Ibrutinib is not yet funded at all in BC for first treatment unless you are 17P deletion. He also feels there have not been enough trials yet on long term benefits and that the trials done were too small a subset. Also FR is the most likely course to obtain a complete and long lasting remission. However I believe that BCCA tows the line in that they are bound by provincial funding. So if Ibrutinib was funded I expect they might be singing a different tune. You need to get a few opinions and educate yourself on the pros and cons of treatment. I hope that helps.

  • I had FR in 2011, because BC was the only province using it... frankly I'm surprised they still are... I had a 3 week remission, was fludarabine refractory and had a Richter's transformation. 😜

    FCR is available in BC, but they low dose the rituxan as I recall, perhaps that's changed...

    Imbruvica (ibrutinib) firstline is currently in money talks with the provinces, probably be the fall before there are funding approvals, Quebec just announced they won't fund it first line... not sure what that means for others, since they aren't part of the pCODR process...

    Venetoclax was not recommended for funding... we will have to see how that pans out... it is available on private insurance as are all HC approved treatmenrs. I heard the have reopened SAP for 17p- second line which Abbvie closed last fall.

    Hopefully we can get better access to FISH testing in the provinces.. it is still very spotty...

    ~chris

  • I believe FR is still the universal front line treatment throughout Canada (with FCR as an option). My specialist explained that although the addition of the "C" sometimes gives a fuller remission the risk of bad side affects can be much greater than FR. As far as I know no province currently funds Ibrutinib for front line. The costs are too high and drug still new. It is funded for refractory CLL in most provinces. Am I missing something?

    Thanks

  • FCR is first line for younger fit patients in most other provinces, but FR is certainly an option, and in Ontario Gazyva and chlorambucil is available for patients not suitable for fludarabine. BC will fund it under some circumstances... under CAP

    cadth.ca/sites/default/file...

    For 13q mutated FCR can give a 10+ remission that MDA considers a cure...

    You can follow Imbruvica (ibrutinib) approvals first line at this link...

    cadth.ca/sites/default/file...

  • Actually that's not accurate for BC. I saw Dr. A. Gerry in Vancouver from BCCA and she is responsible for administering the clinical trials. Gazyva is not available for front line unless it's on a clinical trial for which I did not meet the criteria (over 65 and with preexisting medial issues not related to CLL). It might be available for refractory CLL but then Ibrutinib is funded for that. And since Ibrutinib is not available for front line .....in BC it's FR.

  • I am going to check with the BCCA again about availability of Gazyva and F as a front line option when I see my specialist next. It's possible they have changed their policy but when I last saw him in Janaury he said based on current funding only FR was available.

  • Its Gazyva and chlorambucil, perhaps your doctor feels fludarabine is a suitable treatment for you, in which case GC wouldn't be available.

    There are grey areas in these funding regulations, and I don't want other patients only getting part of the story.

    Keep your options open...

  • Thanks very much for that information. The best a patient can do is be informed.

  • Hi.

    I thank you for sharing your situation and appreciate all the info from you and everyone.

    I'm realizing how important second opinions really are.

    I wish you the very best results possible on your journey through the treatment.😍

    I'm not familiar with the abbreviations, what is the difference between FRC and FR

    B

  • Hi,

    I also have found this site encouraging and invaluable. Best advice I have received on this site is to see a CLL specialist. No complaints about my GP or hematologist in Duncan but they do not have the experience of a specialist. I asked for a consult with Dr Joseph Conners in Vancouver and am so glad I did. I hope you can get in to see him or someone on his team or another specialist. Knowledge is power.

    Heather

  • Dr. Connors has semi-retired, I was told, he is not taking new patients...

  • Hi Heather

    Thank you for your support and dr. Conners name. My GP doesn't think I need second opinion. But I will get one now that I have some names especially before I get to treatment. As we're are learning through all theses sites how important it is to have an individualized approach rather than blanket treatment fights all. Thanks again.

    Barb

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