CLL Specialist in Ontario + other questions

[AM0000]

Hi everyone. Apologies if there is already a thread on this topic. I did a search and didn't come across one. My mom was dx 12 years ago with her WBC slowly creeping up until last Dec 2019 where is was 58 and now, in Feb 2021 it's 124. Her Hem/Onc has now recommended treatment. She feels fine and no other "common" CLL side-effects. He is suggesting Ibrutinib - as a first line if her private insurance covers it. Technically she is still under a group plan and will be covered but given it's a ongoing treatment, we are nervous about what will happen when she no longer has group benefits. He also suggested chemo (no combo). Not sure which route to take. What I do know, is that I would like my mom to see a specialist for a second opinion. Can anyone recommend anyone? Dr. Spaner at Sunnybrook comes up as an option but his own admin doesn't refer to him as a "specialist". Any guidance would be appreciated. I feel so overwhelmed...Thanks in advance!

[cajunjeff]

I think getting a second opinion before treating is almost always a good idea. Treatment recommendations can vary based on the genetic type of Cll we have, so it’s hard to comment on her treatment options without knowing that info.

That said, ibrutinib as a frontline therapy for anyone with most any type of Cll is a reasonable choice. Most chemo treatment options for Cll like FCR and BR are combination therapies, so I am not sure what chemo he is suggesting as a stand alone therapy, maybe chlorambucil?

It wouldn’t make any difference to me personally what chemo options might be offered because I would choose ibrutinib over all chemo options. There are a lot of good Cll doctors still prescribing chemo for Cll patients, so it’s a legitimate option for those who do not have 17p Cll. Doctors in the US increasingly choose ibrutinib over chemo for all people with unmutated Cll.

[AM0000 in reply to cajunjeff]

Thank you so much cajunjeff. Really helpful! In Ontario, Ibrutinib is only covered fully as second line treatment, so I'm scared that f she loses her work benefits, she may not be covered. Although we can cross that bridge when we get there. I just want the best for her, whatever that is.

[Wheatkings]

Hi there - Jeffrey Lipton or Anca Prica at Princess Margaret in Toronto would both be excellent options.....best of luck moving forward...,

[AM0000 in reply to Wheatkings]

Thank you so so much!

[Keepkicking]

I chatted with a lovely lady in Alberta whose doctor placed her on a short term of fludarabine to get get around the second-line requirement for Ibrutrinib. I thought it was quite an ingenious way to go about it.

[AM0000 in reply to Keepkicking]

Thank you!! That might be a good option for us too!

[AussieNeil Administrator]

From what you have shared, you are right about seeking a second opinion, so I'm glad you now have a few suggestions. This post covers the reasons to start treatment: healthunlocked.com/cllsuppo...

Your Mom's lymphocyte count (a more accurate measure than the WBC) has approximately doubled in just over 12 months. The least compelling reason to start treatment is when the lymphocyte count doubling time is under 6 months and when that is observed CLL specialists tend to look for other indications that the patient is in need of treatment, per the adage of "Treat the patient, not the numbers". Sometimes the lymphocyte count can stabilise after a fast climb. We have members with counts several times that of your Mom's who are still in watch and wait.

Neil

[AM0000 in reply to AussieNeil]

Thank you so much Neil!! Firstly, that post is really helpful and it's reassuring to know that we are taking the appropriate next steps. I'm not realizing that a general Hem/onc as brilliant as they may be, might be providing "textbook" care when it comes to CLL. In fact my mom's doc said that his own colleagues don't recommend treatment until their patients counts are much higher especially if all else seems good.

[CLLAdvocate]

Hi AM0000. The CLL Society has a list of CLL Specialists in Ontario you can refer to cllsociety.org/toolbox/cll-.... As others have mentioned, it is very important to have a CLL specialist on board because the treatment options are continually evolving.

[ivy39]

Hello Amoooo. As far as I know there are no CLL specialists in Canada. But don't despair. We do have many physicians who have the expertise, but given the size of the country and the relative dearth of CLL patients, they tend to also care for other cancer patients with other hematological issues. These 'non-CLL specialists" tend to be hematologists/oncologists who have the expertise to care for CLL patients as well as so-called "CLL specialists we hear and read about who practice in e.g. the United States.

I have been a patient of Dr. Spaner at the Sunnybrook Hospital in Toronto for over 15 years and can vouch for his excellent care. He would, in my opinion, be someone I would seek out for a second opinion.

[AM0000 in reply to ivy39]

Thank you so much! Trying to get an appointment with him with just a referral with my PCP and not have to go through my moms current Hematologist. So awkward.

[Golf4life]

Dr. Spaner has been my CLL specialist for the last 2 years. He is the one to get a second opinion on. There are special programs about drugs that your specialist can apply and advise you on.Good luck and best wishes.

[hazelton]

Dr Christine Chen is at PMH and excellent

[AM0000]

Thank you everyone for taking the time to respond!!

[Curling123]

I see Dr. Spaner. He was recommended to me through this site. I am not sure what entails being a CLL Specialist really, Dr. Spaner is a senior scientist, haematologist, oncologist, has written papers on CLL and does medical trials and is familiar with the latest medications for CLL. Hope this helps to make a decision.