Hi,
I'm new to the site - just diagnosed.
Was wondering if there is anyone here that's local to me - Toronto, Canada.
Anyone here in Toronto ?: Hi, I'm new to the... - CLL Support
Anyone here in Toronto ?
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Cave123
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lankisterguyVolunteer
Hi Cave123,
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Welcome to our group.
There is a feature that may answer your question:
healthunlocked.com/people-n...
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You can find it by clicking on "More" next to your Icon in the upper right corner of any screen in HU, see the image here.
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Then you can click on the member's name(s) and send a Private Message using their profile screen.
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Len
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Hi. I am in Toronto. Have a 4 year history of treatment. So far so good. I"d be happy to try to answer. Any questions you might have.
Hello onu1tadi2, Thanks for reaching out to me. Its good to hear that your treatments are working well for you. I'm actually just north of Toronto, in Richmond Hill. I'm interested in finding a Hematologist who can help me on my journey. Its my understanding that I should be getting additional tests;, FISH, IgVH and TP53, to know my genetic / prognostic markers. Do you know where I can get these tests ? Are these only through a hospital ? or private clinic ? Do I need to travel outside the province ? Have you done these test ? (are they blood tests or something else ?)
Thank you very much, enjoy the rest of your weekend !
Hi I am located just outside of Toronto and would be happy to help if possible.
I’m located in the Niagara area but get treated by a cll specialist in Toronto. On w & w for 7 years, started getting immunoglobulin 2 years ago through IVIG for a few months then SCIG. Still no symptoms but started treatment with Acalabrutinib about a year ago. Happy to respond to questions either publicly on this site or through private messaging.
Hell Vizilo, thanks for reaching out to me. Its encouraging to hear about your W & W, it sounds like things are going well. I'm actually just north of Toronto, in Richmond Hill. I'm interested in finding a Hematologist who can help me on my journey. Its my understanding that I should be getting additional tests;, FISH, IgVH and TP53, to know my genetic / prognostic markers. Do you know where I can get these tests ? Are these only through a hospital ? or private clinic ? Do I need to travel outside the province ? Have you done these test ? (are they blood tests or something else ?)
Thank you very much, enjoy the rest of your weekend !
Hi there, from my experience is that those test have to be ordered from your Hematologist. Your GP should be able to find you a Hematologist. Also Newmarket has a great cancer centre in their hospital.
Thanks for the quick response ! Yes I think I'd like to be associated with either Southlake (Newmarket) or Markham-Stouffville Hospital, both have a good reputation. Have you personally done any of these tests ?
The first order of business from my Hematologist was the Fish test, it's the basis from which any treatments are decided when that time arises. I also, can't remember but had other X-rays, ct scans etc to actually show what is happening inside with nodes etc to form a basis point.
As I understand it, the tests must be ordered by a physician in Ontario. Generally, there are only two ways to be seen by a hematologist - either through referral (which may be a long process) or by being assigned one, in case you end up in an emergency situation at a hospital (as a cll’er you could end up with a nasty bacterial or viral infection)
You mentioned you might be prepared to travel outside the province. I know some of the Canadian contributors here have sought second opinions south of the border. Just understand that this would generally not be covered by OHIP - so, either out-of-pocket or if you’re lucky enough to have very liberal private insurance….. As I understand it, the closest US medical centres with cll specialists would be in western NY, either at Roswell Park in Buffalo or at the University of Rochester.
Hi, Welcome to HU. Lots of support and knowledgeable people. CLL/SLL a club no one wants to be part of, but here we are. I’m about 90 minutes north of the city. One year in watch & wait with SLL. Happy to talk.
Hi PoisonDwarf, thanks for reaching out to me. True, this group was not on my list for clubs to join but glad to have the opportunity and be welcomed here by members such as yourself. Sincerely, thank you. I'm actually just north of Toronto, in Richmond Hill. I'm interested in finding a Hematologist who can help me on my journey. Its my understanding now that I should be getting additional tests;, FISH, IgVH and TP53, to know my genetic / prognostic markers. Do you know where I can get these tests ? Are these only through a hospital ? or private clinic ? Do I need to travel outside the province ? Have you done these test ? (are they blood tests or something else ?)
Thank you very much, enjoy the rest of your weekend !
Hi Cave123,Happy to help with the little I can!
How were you diagnosed? Was it through routine blood tests? If so, I'd start with your family doctor or whoever ordered the initial blood tests. Ask them to make a referral. I have SLL, which is the nodal version. CLL/SLL is so individual. My bloods are all still within normal ranges and initially the suggestion was that my own doctor would monitor my watch & wait. I would have been ok with that, as I have a good relationship with my Doctor. I suggest make a list of your questions and start there. As to genetic testing, OHIP will only pay for this once & it's usually reserved until treatment is indicated. I assume that you could pay for it. I am one that normally has a need to know, so I see all my blood results, have copies of CT reports etc., but decided that I didn't need to know the genetic markers at this point. I have no control over what they are. A new diagnosis of an immune system cancer, during a pandemic, was enough. It would likely take me into watch & worry territory, which wasn't helpful. You can live for a lot of years with this before needing treatment & the treatment options are advancing. Only you can decide for you, you can always ask for a referral and can discuss with your doctors.
Feel free to message me, if you want to chat more. Take care, stay safe.
Hi PD, Ya diagnosed through blood, shocker. So far asymptomatic (except for stress
🥴 ) I got a referral for a Hematologist at North York General, comes highly recommended, I will follow up this week to see how long of a wait it is before I can see him. My GP is good but this whole thing is outside her scope, she has little knowledge about next steps which I'm hoping to learn from the specialist. I think it would be good to have the FISH and IgVH prior to meeting the specialist, it would certainly make for a more meaning discussion, but not sure if this is possible, willing to explore privately but don't know where or if I need a specialist referral in order to get these test ? CT scans I take it are important with SLL, so far mine is in the blood, CLL, but I think a CT scan might not be a bad idea either ?! Yes it sounds like there are some promising existing and new treatments out there for us, but this still kinda sucks doesn't it ?! Thanks for reaching out...stay well - CAVE
Glad you got your referral, Cave. Hope you don’t have to wait long. Agree it’s a huge shock and so stressful. One of the biggest challenges I had was learning to live with the unknowns and what if’s. Never heard so many doctors say ‘we don’t know’, and they still can’t tell me ‘what does this mean for me?’ You do adjust, but it takes time. All I can add is be gentle with you & put in place the support you need right now. Hopefully it will be years before you need treatment!! 😊 Let us know how it goes. There is so much knowledge & support within this community.
Hi. I am about an 1.5 hr away, outside of KW. I am still in W&W(9 years). Sorry to hear you are joining this club.
I am following your post. I initially saw a hemotologist at GRH but get checked every 6 months by GP who then forwards my results to her now.
We have a local chapter of the CLL society at Toronto that meets about once a month on zoom presently, and at Sunnybrook pre-covid.You can email gregrspeirs@gmail.com to join the mailing list.
I am happy to answer any questions that you might have...
Hi we are from Toronto. My husband has CLL. He has been taking Acalabrutinib for over a year. So far good results. Healthunlocked has been invaluable in learning about CLL. You should also join CLL Society and read about Test before you Treat. In my opinion you should at some point sooner rather than later find the genetic markers of your disease through a fish test , mutational status of your IGVH and the status of your TP53.
If you have any questions don't hesitate to ask.
All the best
Ileana
Hello Ikahan, 1st off, thanks so much for reaching out. I really appreciate it. This of course is difficult for everyone here. I'm new to this. My recent flow cytometry has confirm CLL. My GP has confirmed that she has little knowledge or experience with this, she is unfamiliar with FISH or IgVH and does not know how to order these tests. From this point forward, I am basically on my own, with the support hopefully from this online group. There is apparently a 6 month wait to see a hematologist. Any suggestions that you may have as to where I can get the FISH and IgVH, or advice from a hematologist would be wonderful news. Take care
I am 2 1/2ish hours from Toronto, newly diagnosed in September. Sorry you had to join the club, but as many will point out it is a much better time to join the club than 10 years ago! I have found members on this forum are very knowledgeable and very supportive!
Hello BobbyFour, Sorry also to hear about you situation, having online forums like this I'm sure can be very helpful. I'm actually just north of Toronto, in Richmond Hill. I'm interested in finding a Hematologist who can help me on my journey. Its my understanding now that I should be getting additional tests;, FISH, IgVH and TP53, to know my genetic / prognostic markers. Do you know where I can get these tests ? Are these only through a hospital ? or private clinic ? Do I need to travel outside the province ? Have you done these test ? (are they blood tests or something else ?)
Thank you very much, enjoy the rest of your weekend !
I am pretty new to this, so perhaps the veterans can help. The CLL Society maintains a list of CLL specialists including a few in Canada: cllsociety.org/toolbox/cll-... is arguably the most important thing to do, as I discovered what many on this site know - local haematologists are undoubtedly incredibly good, but CLL is a rare disease that doesn’t follow the ‘normal’ treatment approaches, at least in some cases.
I am going for a biopsy tomorrow for my first cytogenetic tests (if I using that word correctly 😂), but I don’t know which tests are done in Ontario and what is typical timing.
Thanks BobbyFour, Yes, Cytogenetic tests is correct (I just Googled it !
😆) Thanks again for reaching out, you are just a bit a head of me here so I will need to follow your lead ! Best of luck with your biopsy . So do these test involving assessing your 13q 11q 12 trisomy and 17p ? I hear this is one of the first steps. Have you had a CT scan ? I was told I should do this.
I had a baseline CT scan in September, which was part of the discovery of CLL. I had a second CT scan two days ago to determine progression. I am not sure what the tests are, I think we are limited in Ontario to mutated/unmutated and tp53 or not - but I am not sure. I will let you know what I find out.
so your initial CT was because of something found in your bloodwork (i.e., elevated Lymphocytes ?) which led you to the CT scan (if I understand correctly), and you have already done IgVH (mutated/unmutated) and TP53. How are you feeling otherwise ? any physical symptoms ? (other than stress 😕 !) Are you happy with your Hematologist ?
My discovery was due to enlarged neck lymph nodes, I have SLL which is identical to CLL as far as the bad cells, but presents differently (I heard it recently described as the same cells with a different geography). My blood numbers are all completely normal. I felt great right before diagnosis, felt awful afterwards, felt better when I got some hope from this forum, haven’t felt great post Christmas - which means I think it is mostly a stress issue for me. I am having a node biopsy tomorrow to determine my cytogenetics, as I might have too little in my blood to test (SLL). Plus my neck nodes are very easy to get at, unfortunately. Regarding my haematologist situation, I am not sure yet - I am still working on that 😀
Sorry to hear about some of the details BobbyFour. Are the nodes painful ? From what I read they typically are not, so I hope yours are not painful. This is by far not the greatest suggestion that you will receive from this forum, but someone recently suggested that I drink hot water with lemon (instead of coffee) and I have found it to be very relaxing (so this may help with stress). Good luck tomorrow I'm sure it well go well keep me posted CAIO 👍
How did you tests go BobbyFour ? How long does it take to get your results ? Was it the FISH test ? 🐟 How are you feeling this evening ?😊👍
The tests were fine, since my neck nodes are very easy to get to - I have one juicy one in a spot with no arteries or anything. I don’t know how long it takes, but I have heard 2 weeks. I talk to my PMH specialist in n the 31st, so hopefully by then.
🤭 Gross ! Sounds like you're fine - that's good ! Which hospital are you with ? My GP just made a referral so I will follow up tomorrow to see how long it will be before I can see the Hematologist. Did you receive any general advice about taking care of yourself due to increased risks of infections or secondary cancers ? I'm reading a bit about this but don't know of anything "specific" that I should be doing, besides washing my produce thoroughly and not drinking a ton of beer.
I live near Owen Sound, so only one hospital here 😀. There is good advice in the pinned posts on managing and avoiding infections. One of the big things is to get all the shots, there is an immunocompromised vaccine list somewhere for Ontario doctors (my GP found it). I recall it is pneumonia, Shingrix, the flu shot, diphtheria booster for me and of course COVID shots including booster. Regarding secondary cancers, I believe there is a pinned post too, but in Ontario for a male it means an annual skin exam (this is the most common one for us as we have something like 10x the normal rate), colon screening and/or colonoscopies and prostate screening. Recognizing there will eventually be bumps on the road for us, all the general health stuff applies extra - eat well, exercise, sleep.
Thanks BF ! Great info, I have the Covid shots, had a tetanus shot recently, already had shingles so don't think I need the Shingrix, will look for this vax list though there is probably something on it I should get....I'm looking into Vitamins - I hear B12 is good....sleep has been a challenge lately, not unexpected.....
I forgot tetanus, I had that too. Your GP will know. I won’t lie, diagnosis is extremely stressful. I am still adjusting!! There are some really good pinned posts here that I have found helpful. Nothing in life is guaranteed, but I will leave you with a quote from a well known CLL specialist (it is an interview transcript): “I think these days patients coming to me for new patient appointments, I think one of the things I tell them is that, in many cases patients have looked at online and looking at outcomes and survival and life expectancy, and all those questions, I think in today's world of CLL therapies we have right now and the ones that are coming along, I really believe that for majority of the patients with CLL, hopefully all, I think with the therapies we have, they can live a normal life expectancy. Because we have really, really effective therapy and the things coming down the line, LOXO-305, some other drugs along are safe, effective. And I think hopefully we can find a nice combination of these drugs so that the patients can live on with their normal lives. And this disease will be there, but maybe not bother them for the rest of their life, normal life.”
Very positive - that helps, much appreciated. I'll reciprocate with one of my favorite quotes (not from a doctor, but from great Statesman, who once said), something to the effect of "some go through life as a Pessimist, focusing on everything that's bad, others go through life as an Optimist, and focus on what's good. I CHOOSE TO BE AN OPTIMIST. Eventually, we all end up in the same place, however, I think the Optimists would have lived a much better life, having been happier, and having enjoyed it. " CAVE
Hi, I'm also in Toronto, on Ibrutinib for 2 years. This is a wonderful site. I found it a year after my diagnosis and the people on here gave me so much support and advice.
Feel free to contact me if you have any questions.
Elle
Hi Elle_VThanks for the response I hope you are well this evening. I'm a novice here, I just found a Hematologist so my GP made the referral for me, not sure how long it will take to see him I will follow up this week to inquire. Can you tell me, is it only the Hematologist that can order the FISH and IgVH ? I asked my GP she had no knowledge about these test. I think it would be good to get these test in advance of meeting with the Hematologist so that we can have a more meaningful discussion ? Can you tell me about the process ? Thanks so much, have a good evening - Cave
Hi again, Was reading some of your previous posts. Did you end up with Dr. Spanner ? How are you doing ? For me, a specialist with knowledge of CLL is important of course, but not at the expense of poor bedside manner. The specialist for me needs to be smart but also conscientious, not someone that consults with one hand on the door knob. Have you found a specialist that you like ? Have you explored testing in the US ? with thanks CAVE
Hi Cave, I did end up with Dr. Spaner and am very happy with him. I have also heard very good things about Dr. Silverman at NYG. The specialist I had at Princess Margaret would not answer any of my questions and would say don't worry about it. I would come out of the appointments feeling completely lost and almost in tears. I started feeling much better when I found this website with everyone's kind and supportive advice. I eventually switched to Dr. Spaner. The only thing I would consider in the US is possibly a clinical trial. At this moment in time I am happy with the treatment I am receiving.
I'm guessing it is only the specialist that can order the FISH and IgVH but I could be wrong. FISH may change over time so that test is usually done closer to the treatment time. Let me know if you have any other questions.
Elle
I learned to day that I was accepted by Silverman HOWEVER its quite a long wait 😐 so I will need to keep calling and checking for cancellations I guess. Just curious, I assume, (correct me if I am mistaken) that you have already done FISH and IvGH, (since you are receiving treatment) are these additional test that can be determined from a blood sample (like the CBC or the flow cytometry). Thanks CAVE
Yes, I've had them both done, and yes just a blood draw to determine FISH and IgHV.
do you know where I can get these test done without a hematologist - I just got my referral to a hematologist but it will be quite sometime before I will be seen
I had them done with Dr. Spaner. I don't think you could get them done without a doctor's referral. I understand the feeling of not knowing your markers, you may have to go to the US if you are willing to do that.
Hi, these test will be done by Silverman, I see no need to go to the US and pay for them. I presume you are feeling OK and not in anything other than panic mode because of this being dropped on you. The chance that you will need treatment might not be for quite sometime and you will have a long time on what they call Watch and Wait but most here call it Watch and Worry. I suggest you use the great info from this sight and do your research and have questions for the doctor ready for your appointment. I was 3 1/2 years on W&W before needing any treatment. On a side note with Silverman he doesn't rush to treatment, with me he only began treatment when things warranted it. If this pandemic ever gets better I would have no problem meeting up for coffee, outside of course to discuss things.
Jack
Jack you're the best ! I'm in panic mode for sure - already on self-imposed watch and worry. I've been off work since my diagnose to figure things out and educate myself, this site has been great. There are moments when I feel like, OK, I got this, it's not as bad as I think, and I can certainly appreciate that so many others here have been impacted to a much greater extent than I have, but I do still worry, and I know that's normal. My interest in further testing is just "to know", thinking / hoping that it may make me feel better / more confident, but that might not necessarily be the case either. I'm glad to hear the Silverman does not rush to treatment. I have a lot of confidence in him. I'm sure that once I meet him I will be calmer knowing that I have someone I trust looking after me. Until then (I was given an appointment in September - which in a way can be viewed as good if he thinks I can wait until then ?!) I need to continue to research and stay positive. I plan to call work next week and start back on a part time basis. I appreciate your generosity and guidance Jack - I would of course look forward to an opportunity to meet up for coffee when things start getting back to normal (and they will soon I'm confident of that), I have travel plans that have been put off for too long now....take care, enjoy the rest of your weekend, Lee
I live in North York, have had CLL for 11 years now, had FCR after 2 1/2 years of W & W, I got about 3 years from that and am now 4 years this month on Ibrutinib and all bloodwork is good. This site is terrific and there's a great support group which used to meet monthly at Sunnybrook but now is being done virtually with zoom, lots of great info from people with similar CLL. Any questions feel free to message me. Jack
That is very encouraging to hear! I am 57 but expect a short W&W since I am an SLLer, and my nodes happen to be in a very visible area - my neck. I look pretty lumpy now 😀. If I can make it the amount of time you have, and reach the age of 70 with a reasonable quality of life - I will be very pleased!!!
Hi Jack, I just wanted to provide you an update, success (well kinda), I learned today that Doctor Silverman has accepted me, however, it's a really really long wait. Reagan put me in contact with Florence (who does the scheduling for new patience at NYG) who said that it was ok for me to follow up every once in a while to see if I can get in to see him sooner. I wanted to thank you once again for the recommendation, I am happy to have found him...now its just a matter of when I can actually seeing him....hopefully soon 😐 I hope all is well with you and wishing you continued good health with your treatments. Lee
That's good, I think that you will like Dr. Silverman, although he is not a CLL specialist he has numerous patients who have CLL and a couple who are in my group. I have checked with every treatment plan he has done for me with some of the top specialist at PMH and my treatment plan would've been exactly the same that they would've done for me, which made me feel a lot more confident. I usually go in to my meetings with him knowing the answers I should get before hand. I do my research. I also know that he would have no problem giving you a referral if you feel you need one. Also if you need an answer that he is not sure of he will find it for you fairly quickly. The Chemo Clinic at NYG has some of the best staff, very knowledgeable , cordial and very nice people, I can't say enough good about them.Good luck, stay healthy
Jack
thanks Jack, I hope to see him soon, as it turns out, I know of 2 people (close friends) that both took their father's to see Silverman. Both were elderly, in their 90's, and recently died with their cancers (not because of their cancers), and these were not CLL. My friends gave a very positive recommendation for Silverman. I'm looking for a knowledgeable expert who is thoughtful and conscientious (does not need to be a so-called CLL specialist specifically), so from what I gather this will be a great fit for me. If you happen to see him soon.....tell him I'm a coming.....haha 😜 Be well, all the best, Lee
Thank you Jack, I heard that North York General is also a good hospital. I'm just looking for someone to recommend a Hematologist that they like so I can get the process started. My GP just sent out a referral for me, no one that she knows she just pulled a name off of a list, and we are waiting to hear back so I do not know how long this will take. She said that she would write a referral for me to anyone that I can provide to her. I will ask her to send me for a CT scan. Unfortunately my GP has confirmed that she has little experience with CLL so I do not feel like she will be providing much guidance / suggestions for me going forward. This is a great online forum - thank you ! Lee
I have used North York General from day one and can't say enough about their cancer clinic. I have done my research and found that I would've received the exact same treatment as I got if I went downtown but it's only 10 minutes from home.. It's been 11 years now and I am doing great. My hematologist at North York is Jeffery Silverman, he was a little hard to talk to at the beginning but he's super now and he seems to be up to date and if he doesn't have an answer will get it for you fairly quickly.
Please ask for Dr. Spaner at Sunnybrook, or the CLL team at Princess Margaret Hospital.
The only other CLL specialist I will recommend around the GTA area is in Hamilton.
Parking at Sunnybrook is easier than around PMH, and Dr. Spaner might be the best CLL specialist in Canada, in my biased opinion.
The entire team at Sunnybrook has lots of experience and will make the transition to appropriate treatment (including figuring out the finances) nearly seamless.
Richmond Hill is not that far from Sunnybrook.
I was commuting from Mississauga, which in rush hour might be longer than from Richmond Hill.
Hi BoomrangSui, Thanks for the info, I've heard nothing but good things about Sunnybrooke. Are you at Sunnybrooke ? What type of finances are we talking about ? Can I assume that some treatments are not covered by OHIP. Do you know about FISH and IgVH ? I would like to get these test, even privately if I have to, just don't know where I can get them. Are they only administered through a Hematologist ? Hope you are doing ok - all the best, CAVE
I was at Sunnybrook for my initial treatment.Since then I have had a stem cell transplant, so presently I am not on any treatment.
Sunnybrook can do all the tests, but in my mind having a CLL specialist is more important than even any test, as you need that specialist's guidance about which test, why and what to do about it.
And Dr. Spaner - in my opinion - is one of the very best. Case in point, there was a rather complex decision during my treatment, and Dr. Spaner not only discussed it with me, he also reached out to his CLL specialist colleagues in US to get their insights.
Finances, depending on the treatment and your private insurance plan, can get a bit tricky. But the team at Sunnybrook took over all the paperwork for me and it became totally seamless and cost me maybe $2 for invoices that ran into tens of thousands.
I only have the best of things to say about the entire experience, thanks to Dr. Spaner and his team.
Thank you BoomrangSui, I have heard mixed things about Dr. Spanner, mostly great, but also a couple of people who were disappointed. Clearly he is brilliant, a leader in the field and very well known. I don't know how difficult or how easy it will be for me to see him and how long that may take, I will need to make a decision and ask my GP to make a referral I guess. I'm glad that Dr. Spanner was helpful for you. In your situation it sounds like he really went above and beyond to help you. Thank you for the information, stay well and enjoy your weekend, CAVE
Thank you Jack ! I am very appreciative. My brother, has multiple heath issues and is always at North York General and also speaks very highly of the hospital. My in-laws are in Willowdale and go to NYG. What was the "hard to talk to" concern (just curious even thou its been resolved), because that's something that I'm certainly looking for (a doctor that consults without having one hand on the door knob), that's my GP, sadly, not very reassuring so I am also in the market for a new GP, which is hard to find. With 11 years experience and positive results I will certainly take your advice and see if my doc can make a referral for Jeffery Silverman. For how long have you been seeing him ? Was he with you during W & W ?
Dr. Silverman has been with me for my whole 11 years, it wasn't so much as 'hard to talk to' as he was quiet but I was never ever in doubt about my care. I never feel that I am being rushed out the door. See my post on here about my journey thru the 11 years.
Hi Cave, I live in Toronto. Seen at Odette (Sunnybrook) with Dr. Spaner
Participated in a 15 month Ibrutinib/venetoclax fixed duration clinical trial from February 2018 - April 2019 in Rochester, New York
Best,
Fell
Hello Fell, Yes Dr. Spanner seems to be the man ! I've seen his YouTube videos. How are you doing these days ? My GP just made a referral for me at North York General, I received some favorable information about a Hematologist there so we'll see how that goes, if it will take too long to see him I will put a referral in for Sunnybrook as well, however I don't know how good my chances are of getting in there. Do you see Dr. Spanner directly for appointments or do you deal with other Hematologists there ? How do I get a FISH and IgVH test ? Is this only through the Hematologist ? Can I go someplace to do this privately ? Thanks Fell, stay well, CAVE
Hi Cave, I apologize for the late reply - I don’t get notifications.
I see Dr. Spaner directly every six months
I seem to recall that I had my FISH done at north York general (my first hematologist was there) and my ivgh test in Rochester. I’m not sure if you can get tests done privately, maybe somebody here might know?
I feel completely normal, knock on wood. I used to think about my CLL every day and I now sometimes forget that I have it
I wish I could be more helpful
Feel free to message me anytime.
Best,
Fell
I have a referral to North York General Hematologist (Dr. Silverman) comes highly recommended, the only problem is it's September. I feel quite anxious, I don't want to wait 8 days, let alone 8 months before I can see someone. Dr. Spanner of course come highly recommended. So your Hemotologist at NYG did your FISH and then sent you to Rochester for the IvGH ? I'm glad that you feel good, asymptomatic. I feel the same, except for stress of course. I'm learning a lot this is a great forum, I appreciate your insight everyone here awesome. CAVE.... Stay well As part of your regular monitoring, do you do blood test every 6 months ?, 3 months ? is there a standard - I guess everyone is different depending upon their situation.
To be honest I did not get a good feeling from the haematologist at North York General so I went to see Dr. Spaner and was lucky that he took me on as his patient.
I received the ivgh testing in Rochester as part of my clinical trial
I do get blood work done every six months
I feel pretty certain that people get blood work done whether they see their specialist three months, six months or once every year.
I know that it’s very easy for me to say because I also felt a great amount of stress the first year of my diagnosis, but try your best to do breathing exercises and keep in mind that the therapies offered at this time are excellent.
All the best,
Fell
I am new as well. Just found the site. I live in Toronto.Woman89
I am in Toronto
Hello 1Glorydays - Welcome, I'm also new here, diagnosed December, this is a very good online site. I have learned lots since joining. If I can help in any way let me know. CAVE
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