Question for MPN patients in Canada

[Planti]

I live in BC and have JAK 2 mutation positive ET. I have been told by my MPN specialist that there is no way to have JAK2 mutation allele burden or Non-driver mutation testing in Canada either publicly funded or paid for privately.

I wonder if anyone with ET in Canada has had these tests done. NGS is done only if there is a question of diagnosis, ET vs prefibrotic myelofibrosis.

Thank you all for being on this site, it is a world of knowledge and comfort.

[Thankfulone]

I live in BC, too. I have post ET mylofibrosis. Where did you find an MPN specialist? I was first diagnosed in 2008 and progressed to mf in 2016.

[Planti in reply to Thankfulone]

Hiya, I had given up on finding anyone. Sorry to hear that your ET progressed to MF, hope you are doing okay. I got the name of Dr. L Foltz at St. Paul's Hospital from the list posted here by Hunter of MPN specialists. I can't tell you if she has a lot of MPN patients as I did not ask her. I was pleased that she put me on Pegasys after my brief and unhappy trial of HU.

We have a telephone consult coming up. Where are you in BC? Are you happy with your current management? I am on Vancouver Island and had no trouble transferring my care from an Island haematologist. I was only diagnosed in 2020. My father had ET and his brother had PV so in my case there is a familial tendency.

Take care, Lauren

[Thankfulone in reply to Planti]

I live in the Okanagan and my local hematologist retired at the end of December. I have an online appointment early in March with a new one. But I know nothing about him and his name is not even listed at the clinic. I had one I really liked in Burnaby but we moved back to the Okanagan a year and a half ago. I have been happy with my care until now but am feeling uncertain now.Blessings, Paulina

[blue_reader]

Hi there....I live in Ontario and was diagnosed with PV (including elevated platelets) 2 years ago. The bone marrow biopsy that I had done at the time included a measurement of the variant allele frequency (VAF) which is another term for the variant allele burden. The bone marrow biopsy was done by my local hematologist. I then went to get a 2nd opinion at Princess Margaret Hospital in Toronto, where the diagnosis was confirmed. They ran a lot of bloodwork on me, including NGS. I did have to sign something indicating that they could run additional bloodwork on me for research, so I'm thinking the NGS may have been a part of this bloodwork for research. Hope that helps.

[Ayla13 in reply to blue_reader]

Hi , I too am from Ontario. If you don’t mind me asking , how did you go about getting a second opinion at Princess Margaret hospital?

[Planti in reply to Ayla13]

Hiya Blue_reader, that is interesting and I am guessing that the team at St. Margaret's is involved with research and that is why they can do those tests. My MPN specialist says that NGS would not add anything to my treatment and that may be so but I still think that having an idea about what factors contribute to progression is good to know. Do you know where the VAF was done? I mean the specific lab?

I will try to find out if they will take any samples for analysis for people who are not in their catchment. Often things are available in Canada but not to Canadians because of our rules about no one paying for medical treatment (a very sketchy concept as many people do pay for things or get them because they are in special groups like elite athletes, armed forces, police etc). Or they are not offered to people from other provinces.

Thanks again and I hope that you are feeling okay and happy with your treatment.

Lauren

[blue_reader in reply to Planti]

Hi, Lauren...Yes, there is a lot of cancer research done at the Princess Margaret Hospital. I agree that it would be good to be able to get the NGS done so that you can see if you have any other factors associated with your MPN. My NGS didn't show anything else beyond the JAK2 V617F mutation.

As far as the VAF, it was determined during the bone marrow biopsy analysis which was performed at my local hospital. Have you had a bone marrow biopsy done?

My treatment currently involves phlebotomies (~ every 4 months) plus an anti-coagulant. I'm on an anti-coagulant instead of aspirin due to another health condition. The phlebotomies are getting more and more difficult for me and do not help my platelet counts which continue to gradually rise. As such, I'll be discussing next steps with Dr. Gupta when I talk to him in February.

Hope all is well with you too!

[Planti in reply to blue_reader]

I did have a BMB though it was at my request with my first haematologist. If there had been any doubt that it was consistent with ET only, they would have done an NGS. I will ask again at my appointment next week as maybe things are changing with more new information. I would really like to know the allele burden.

Sorry to hear that the phlebotomies are difficult. I am very happy with Pegasys, minor side effects and it was fairly quick to lower my platelets. Have had slight elevations in liver enzymes that drop back to normal range and very slight decrease in HCT and neutrophils so might have a downward adjustment next week, I hope.

It is good you will 'see' your haematologist soon and I hope that you sail through any new treatments if that is what is decided. Take care, Lauren

[blue_reader in reply to Planti]

Hi, Lauren....One thing I've learned is to always get a copy of my bloodwork and test results. That is how I know about my VAF.....my local hematologist did not give me that detail when I met with him after the BMB. So if you don't already have a copy of the BMB results, I would suggest asking for one. It might be there?

Interesting to hear that you're on Pegasys and are happy with it. That is something I'm considering so I will be asking about it at my February appointment. Was it difficult to get? Did you have to try hydroxyurea first?

All the best with your appointment next week and hopefully your dosage gets adjusted if necessary.

Lisa

[Planti in reply to blue_reader]

Hi Lisa,

We have a system whereby our blood results are online for us to access at any time. Some are not reported until after the doc sees them and hits a button so that we can too, but some docs don't remember to do that. The haematologist with whom I have phone appointments told me that allele burden is not done in Canada so now that I have your information I can correct that and perhaps I can see if I can send blood to Ontario for analysis. She was not aware of any lab that did it even as she has never had a patient ask for it. I am a physician, well I am a retired physician that is.

I did have to try HU first. I only took it for about 2.5 months and stopped, I had a bunch of side effects that other people might have tolerated but as I had felt absolutely no effects of the ET, they were intolerable to me. When I had my first appointment with the MPN specialist (her name was on the list) she immediately put me on Pegasys to my utter relief. I have a few side effects from it but they are tolerable and it is worthwhile to know that interferon treatment may lead to sustained remission after some time, which is the best we can hope for currently.

I have already dropped from every week to every 10 days and that helped with the liver enzymes but now my white cells have dropped. The drug is so expensive that I also want to save them some money. When my dad had ET he had to pay for his medication because it was not considered a cancer back then, though I thought it fit the criteria.

So many thanks again for your information. It is good that you ask for all your blood results, I did that before there was the online system but with every two week blood tests I would have a very full filing cabinet.

Cheers, Lauren

[blue_reader in reply to Ayla13]

Hi Ayla13....I just asked my primary healthcare practitioner for a referral to Princess Margaret because I wanted a second opinion from an MPN specialist (as recommended by many on this forum). She agreed and made the necessary arrangements for me. I was able to get an appointment with Dr. Vikas Gupta in about 3 months time. I would think if you're not already seeing an MPN specialist, then your own practitioner should be able to do the same for you.

My first appointment with Dr. Gupta was in July 2020. He indicated that I could stay under the care of my local hematologist, but could see him on a yearly basis if I wanted. I went past the year mark, but have a phone appointment scheduled with him in mid-February.

There are also MPN specialists in some other larger cities in Ontario.

Here is a link you can check out: canadianmpnnetwork.ca/canad...

Hope that helps!

[Ayla13 in reply to blue_reader]

Thank you for the information. I have asked my family doctor for a referral about 2 months ago so this gives me encouragement that they have not forgotten about me . My oncologist/ hematologist follows all the typical guidelines for our blood cancer ie: 3 months visits , aspirin , and the use of HU as I’m 63 yrs old . I was diagnosed with CALR 1 exactly a year ago . I guess I just want to touch base with an MPN specialist in case of progression . Thanks again and good luck in our journeys !

[blue_reader in reply to Ayla13]

You're very welcome! And yes, hopefully you'll get a call some time soon. Do you mind me asking what part of Ontario you're in? I'm in Sudbury.

Lisa

[Ayla13 in reply to blue_reader]

I’m in Toronto .