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CLL Support Association
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IGHV year in Canada

Just found out from my CLL specialist that the IGHV test is now being done in Vancouver - as of earlier this week. (Presumably at the Cancer Agency) I’ll be one of the first! Way to get onboard BC!

Heather 🇨🇦

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Great news! Thanks for posting this Heather!

Another BC'er,

Deb.

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Glad to hear! I'm in BC too and go to BC Cancer Agency in Vancouver.

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Went there for my PET but glad to have Victoria so close.

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Apparently Victoria now has PET scan! Was supposed to become operational this January. That would be great because BC's one and only PET scan machine in Vancouver is extremely overbooked and backlogged. Cancer patients are waiting for treatment because they can't get on PET scan. I was one such case a year ago.

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Victoria has had a PET scan for several years but no money to build a place to operate it. Sigh

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Well maybe that's what's new then - the space for it. When I was being treated last summer at BC Cancer Agency in Victoria (at Royal Jube) the construction for the PET scan was underway with a lot of signage saying it would be complete in January 2019.

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Wow. News to me. I’ll check it out.

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Yay BC! My doc here in Ontario did it without even having to ask for it, so I'm glad BC is getting on board.

🇨🇦

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Me too!

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I never got it done I am in Ontario. My doctor never brought it up.

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Really? Mine just did it automatically along with all the other bloodwork.

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Do you see a CLL specialist?

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Nope. Just a hem/onc.

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Ya that it was i have too. That is weird.

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Where do you go? I just transferred due to location, but the hem/onc that ordered it is at the Walker Family Cancer Center in St. Catherines.

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I am in Windsor,ON

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did he also do a FISH too?

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She did everything.

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are you mutated?

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13q mutated. 😊

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that's awesome, those are the best markers.

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are you in W&W??

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Yes. Docs say no need to treat yet. But I'm new to the whole game, so it's still nerve wracking.

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People with 13q deletion only and mutated live near normal life expectancies.

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How is your WBC DisneyMom?

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IGHV test will reveal if your CLL is mutated on unmutated. And that, in turn, is predictive of how well you will - or won't - respond to chemotherapy. So it could tip the balance in favor of giving you one of the new non-chemo drugs, if it shows you to be unmutated, which means you may not get a deep response on chemo. I never had this test done in BC when I stared treatment in 2017. But I guess that test was not then available in BC. And I ended up starting on ibrutinib anyway (after a single cycle of FR-lite). So if you end up with one of the new drugs (novel agents) being your first treatment, it may not be so important to know your mutational status beforehand. But always nice to know stuff about your condition! Here's an article on it: ncbi.nlm.nih.gov/pmc/articl...

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PlanetaryKim yes i know.

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Great. Other people on his forum of 12,000 may not. So I posted the info for general knowledge of all. People are at many different levels of info here.

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Very useful info. Thank you for sharing. My mother was just diagnosed and so we are trying to educate ourselves.

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The benefits of information sharing!

Good post Jemorgen.

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Good news! Thanks for letting us know!

marcyh

BC

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