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

[Jiggs17]

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 👍😍

[ikahan]

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.

[Jiggs17 in reply to ikahan]

Hi

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

[Cllcanada Top Poster CURE Hero]

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

[Jiggs17 in reply to Cllcanada]

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

[Cllcanada Top Poster CURE Hero in reply to Jiggs17]

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

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

[Jiggs17 in reply to Cllcanada]

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

[naddude in reply to Cllcanada]

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.

[Cllcanada Top Poster CURE Hero in reply to naddude]

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

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

[naddude in reply to Cllcanada]

Yes. Her primary specialty is treating lymphoid cancers including CLL with transplants. leukemiabmtprogram.org/gene...

[Jiggs17 in reply to naddude]

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

[naddude in reply to Jiggs17]

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.

[Cllcanada Top Poster CURE Hero in reply to naddude]

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

[naddude in reply to Cllcanada]

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

[Cllcanada Top Poster CURE Hero in reply to naddude]

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...

[naddude in reply to Cllcanada]

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.

[Miller1960 in reply to naddude]

Interesting. I'm on Fludarabine and believe it's because I'm young 57 and in good health. I was confused as others were not on this drug for their first treatment. Guess it's a BC thing.So much to learn.

Chris

[naddude in reply to Miller1960]

You are on Fludarabine because that is what is funded in BC for front line unless you are 17P deleted or are otherwise resistant to FLudarabine.

[naddude in reply to Cllcanada]

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.

[Cllcanada Top Poster CURE Hero in reply to naddude]

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...

[naddude in reply to Cllcanada]

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

[Jiggs17 in reply to Cllcanada]

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

[Miller1960 in reply to naddude]

Hi

I also live on Vancouver Island and have just completed 5 months on low dose Fludarabine. I see Dr.Cuthburg I believe her to be a Cll specialists. Feeling like I'd like a second opinion and a Dr that communicats with me.Our appointments are 10 minutes. She seems very busy with all her patient's. I'm not sure of all that important markers people speak of. I feel like I need to do more.

Chris

[naddude in reply to Miller1960]

Try and get a referral to the agency and to Adrian Yee. He is awesome. .

[Miller1960 in reply to naddude]

Thanks I will.Have you heard of Dr Cuthburg. She was recommended by my gp when I was first diagnosed. I feel like she's taking care if me but have nothing to compare it to.I have no idea what's going on to be honest.

Chris

[naddude in reply to Miller1960]

I have not heard of her. But as a patient you have a right to a second opinion. Dr. Yee at the BCCA would be perfect for that. He's one of the best.

[Miller1960 in reply to naddude]

Hi

I know this post is from a year ago but just wanted to say that I'm under the care of Adrian Yee at the Royal jubalie hospital in Victoria. He is fantastic. I had also seen Dr Gerrie in Vancouver who was also fantastic.

Miller1960

[naddude in reply to Miller1960]

Excellent! Both are awesome. Hope they can help. They sure helped me.

[Jemorgen in reply to Miller1960]

And I see Dr Nichol MacPherson at BCCA in Victoria who is also an excellent CLL specialist.

[naddude in reply to Cllcanada]

Cindy Toze is not a CLL specialist but an epidemiologist with a specialty in transplants. So unless you are going that route she's not for you, yet (and hopefully never.) I would also highly recommend Dr Alina Gerrie in Vancouver, and Dr. Adrian Yee in Victoria. Booth are with the agency. Chris is right. Generally if you can get a referral to the Cancer Agency pretty much all of the Docs in the Lymphoid cancer section are great.

[Jemorgen in reply to Cllcanada]

In June I was told by my CLL specialist at BCCA in Victoria that BCCA in Vancouver is now doing the IGHV test.

[PlanetaryKim in reply to Jemorgen]

Interesting. Are you going to get it done?

[Jemorgen in reply to PlanetaryKim]

Not relevant at this point as it wouldn’t impact treatment. It’s more for interest sake now. It looks like if I ever need treatment in the future I’ll be getting newer agents that are not dependent on IGHV status

[PlanetaryKim in reply to Jemorgen]

Still, I wonder whether it isn't always relevant to know mutational status... It's MOST relevant for making the decision between chemo vs. novel agents. But I think it has other prognostic value as well. I suppose it's moot at the moment for each of us, since we are each currently on treatment.

[Jemorgen in reply to PlanetaryKim]

Since it would require a BMB for me (my blood is still all clear) I’m not in any hurry lol

[PlanetaryKim in reply to Jemorgen]

haha! I can understand that.

[wwheather]

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

[Cllcanada Top Poster CURE Hero in reply to wwheather]

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

[Jiggs17 in reply to wwheather]

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

[Miller1960 in reply to wwheather]

I'm in Cowichan Bay.Who is your specialist.My gp in Cobble Hill sent me to Victoria to see Dr Cuthburg. My family Dr will not discuss results.

Chris