I was diagnosed via node biopsy with SLL Aug 2018 and have been on W&W. My blood is all still in the normal range with too few points to show trends as yet. I have extensive lymph involvement (neck, supraclavicular, axial, mesentery, groin) with a 7x3 cm cluster of enlarged nodes in the mesentery. I have had flow cytometry but not FISH. Lately I've had considerable discomfort and pain in my gut. My energy is low but not debilitating. I have been able to avoid several nasty viruses that have claimed family, friends and coworkers. My GP has ordered another CT. I understand that treatment typically starts if a node or cluster exceeds 10 cm. My question is whether there are any differences in treatment decisions, parameters, processes etc in Canada (BC) vs other countries? Should I be requesting FISH? Will I have to get a bone marrow biopsy? What can I/should I expect over the coming months? thanks
SLL treatment in Canada: I was diagnosed via... - CLL Support
Yes... treatment is provincial, and it varies across Canada a bit, as does access to some treatments. We tend to lag the U.S. drug approvals by about 18 month historically, access is sometimes not as great, we lack clinical trials, and diagnostic test is different than the U.S. both in timing and availability.
That said, we are fairly similar to the U.K. and European countries...
With SLL, in Canada a node biopsy or BMB is used more frequently for FISH, and this is done closer to treatment since FISH can change...
I suggest getting to the BCCA, I was treated there, and they have a number of CLL/SLL specialist.
I second the suggestion to get yourself an appointment with a CLL/SLL specialist at BC Cancer Agency in Vancouver, where most (all?) of the province's CLL/SLL specialists are based. You would be in good hands there - the best you can get in BC. My CLL specialist is there, although I've been told he's not taking new patients. But I'm sure others are.
Dr. W. Lam and Dr. Yu ... I would consider CLL/SLL specialist at Burnaby hospital, they cured my RT...
She chairs the CCOLD conference annually.
Thanks for responding. I have been to BCCA in Victoria but my hem/onc in town works collaboratively with the guy I saw in Victoria so I feel pretty well covered. Sometimes I wonder about sticking with BCCA though. It's just not as convenient if I have to get regular treatments.
As you have SLL your blood counts are likely to stay in the normal range, the malignant B cells tend to stay in your nodes. This means that monitoring disease progression is difficult so CT scans and BMB are likely to be needed.
Thanks. I’m hoping for a Star Trek version of the BMB where they beam a sample of bone marrow out rather than the big needle lol
Hi. It was mentioned above that Canada is similar to the UK which is where I am. If it helps my haematologist said she was not in the habit of torturing patients and that a bone marrow test was not necessary for this cancer. Although it may sound strange, it is nice to see posts by those with SLL, simply because in my limited experience, it would seem that those with CLL have blood results that give all the answers, whereas with SLL only biopsies will show it's prescence, and CT scans where and what stage it is at. My father was diagnosed with CLL at 60 and remained on watch and wait with regular blood tests until as they commented twenty two years later, "it put it's head above the parapet" when he was 82. He was put on a gentle regime which he weathered very well and is still alive at 87.
I, on the other hand at 55, having spent eighteen months in and out to the GP truly very unwell and struggling with work and other committments, being consistently told that bloods were fine, finally demanded an ultrasound of my neck to check out the lumps. Following that, a visit with an E&T consultant who carried out a needle biopsy, confirmed non Hodgins lymphoma, then the removal of a node in my neck confirmed SLL at which point I was assured all would be fine being so young! A full body CT scan however, showed it was everywhere and Stage 3, so attitudes changed rapidly and the haematologist said stop work, urgent to start chemo which was a hideous regime designed for so called young, fit and healthy (!) patients. It worked extremely well destroying the B cells, but almost destroyed me in the process. Happily I am still here and now on watch and wait for relapse, yet although I try to tell them no-one but me felt the nodes and they had to be shown where the first time round, plus that my bloods were better then than now, they insist on palpating only, while assuring me my bloods are fine each appointment, which can be very frustrating. My fathers bloods were completely different to mine being poles apart, when we entered chemo and during treatment. They continue to be, albeit we are both gratefully very much alive and in remission.
May I wish you ease and good fortune going forward.
Hi Sheelin- thank you so much for taking the time to respond. Your comment about it being nice to read posts by others with SLL really resonates for me. I find so much of what I read is all about the blood and mine is perfectly normal - every little cell of it. My SLL is also stage 3 and I have enlarged lymph nodes throughout my body but I’m very lucky in that I feel relatively well. The hem/onc at the Cancer Agency in Victoria said I’d need to start treatment in 2-3 months but because I was relatively asymptomatic we have waited 6 months so far. Now I’m feeling more fatigue and, as I mentioned, I have increasing pain and discomfort in my gut.
My next CT scan should be done within the month. While I’d rather not start down the treatment road earlier than necessary, it’s rather enticing to think I may feel better. One foot in front of the other ...
I hope your journey becomes easier and your remission continues indefinitely.
Thank you Jem. I would in your shoes, ensure your deciding docs are familiar with SLL/CLL as there is often a lack of full understanding among consultant oncologists / haematologists. B cells are so important and while they have happily gone off on a malignant looney tunes party all through you, they wreak havoc for you!
I am told that Ibrutinib which recently has been made available for general use in first time treatments, rather than just for those who have relapsed, is as good or better, and far more gentle than the FCR chemo regime which is seen here as the most effective for those who are "young, fit and healthy".
My thoughts go with you.
Thanks for your thoughts Sheelin.