We live in Brampton, Ontario in Canada. My wife diagnosed with CLL in Dec 2020. We did not have the opportunity to talk to a hematologist in person and appointment only by phone and the Hematologist said it is CLL and nothing to be worried just the w & w situation. When I start questioning further tests and plan he cutoff the phone which is very strange to me? I am not sure I am wrong or he is wrong? I thought he did not want to discuss more.
So, I am wondering how to request these tests:
• chromosome 17p deletion; OR
• TP 53 mutation; OR
• unmutated immunoglobulin heavy chain variable region (IgHV)
I would be grateful if you plz answer this.
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Sagarcanada
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Because those tests (other than the IGHV mutation test) can change over time and are not medically needed until treatment time approaches, I expect you may find it difficult to have those tests done. That's commonly the case in countries with universal health care, even if knowing the results may help with our mental adjustment to living with CLL.
Hi, Smith, I am not a medical person and I do not have experience much of CLL so I wanted to know how the CLL is happening with her? either by deletion or by mutation etc ...? Before finding this site we were very much frustrated we saw dark every corner, however; now we are getting better and every day getting acquainted more.
I also live in Canada my Haematologist is in London Ont and I had all the testing while on WW
The only testing I had to fight for was the IGHV prior to starting treatment when my status changed and that was because nearly three years ago the testing for that was relatively new
You live in an area that is well positioned for many CLL specialists perhaps it has more to do with COVID limiting in hospital testing s
As Niel indicated, you likely will not be able to get those tests until you are much closer to treatment.
I am in Canada and was diagnosed with CLL in early 2016 and was on watch and wait until March 2020 when I started treatment on Ibruitinb.
My heamatologist would not order those tests until December 2019 and January 2020, just before it was time for treatment in order to determine the best treatment.
As Neil has stated, it may be Canada's health system limiting the tests you can have the tests.
I am sure you have read of many on this site that have gotten their entire profiles through testing when they were first seen.
While the U.S. seems to (or has in the past) done the full testing for patients--I did not see any such tests until I had been diagnosed for 15 years. I saw the tests then because my insurance,
U.S.medicare, sends me a notice of what has been paid to whom on a regular basis (quarterly).
When I read tests had been done, I asked my CLL provider at the time, why I was not told those were being ordered and told him I wanted a copy of all tests results. We have the right to see all test results. It is a good practice, by the way, to ask for the blood draw reports so you can keep your own records and hopefully have better communication with your wife's Dr.-- actually I do that with any Dr. I see and feel it is helpful to keep track of my health that way.
It's hard to get those tests in Canada. But I managed to get FISH analysis back in 2008, not long after diagnosis. The reason: my CD38 marker was high so I requested it. My onc at the time said he would try but didn't promise. It was done and the result was what I expected, -del17p with TP53 missing. ..a dismal result but I've been fine. So testing doesn't mean everything is set in stone. What is her CD38? You may not have any reason to test further. Do you have copies of all your labs and reports? It may help you understand why your doctor says what he does.
I am in Toronto and I got an ultrasound test as soon as my doctor and I noticed my nodes were swollen in my neck, then I got a FISH test with a CLL diagnosis. How did she find out she had CLL to begin with if not through a FISH test?
I was diagnosed in 2019 and I am on W&W. if her doc said nothing to worry about, I suspect your wife had blood work done to show her white blood count, platelets etc were good to be on W&W. Ask for a FISH test. I got one right away. It’s important to have and then have blood work every three to four months to see if any changes. Find another hemo if you don’t get anywhere.
Listen to AussieNeal. He makes sense. As I learned about those tests from this forum, I became anxious, too. It makes a whole lot of sense that while I’m in W&W, the doctor is also watching and waiting so I’m confident I’m still in a “good place”. Send an email or telephone message to your doctor explaining the anxiety being felt. Sandra😊
I live in Alberta Canada. I have had CLL for 11 years. Recently I had treatment for six months. Finishing in December. My haematology team was very clear that I would get no FISH analysis until it was medically necessary as I was approaching the time where I would need treatment. My FISH analysis was done right before treatment, Since mutations change over time.
They tested my IGHV a couple of years earlier. They have always been thorough and comprehensive and followed the rule book to a letter.. I have also never had to pay for any of it out of pocket, all of the testing and treatment was paid for by our government healthcare system.
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