Putting faces to members I have known online for a long time
The organizers of this conference have been kind enough to invite me to speak. I was unable to accept their invitation last year. I did not want to drag my husband PC to conferences and I certainly did not want to spend a single day away from him. Sadly enough, I have no such constraints on my time now. I hope I get a chance to meet many of you.
Incidentally, my speaking slot is not as a dinner time speaker on Friday. I will be speaking instead on Saturday, April 25 during the Patient Session. I will try my best to make it an interesting speech, hopefully it will get some discussion going.
2nd TRENDS IN TREATING CLL Conference
April 24-26, 2009, Niagara Falls, Ontario
Sheraton Fallsview Hotel and Conference Center
Co-hosted by CLL Patient Advocacy Group, Juravinski Cancer Centre and The Leukemia & Lymphoma Society of Canada
This conference is the brainchild of the CLL Patient Advocacy Group and is intended for CLL Patients/Family and Friends, as well as Healthcare Professionals. This conference is a follow-up to the first conference held in 2007.
The explosion of new therapeutic drug research worldwide and sophisticated prognostic tools has significantly improved the treatment of CLL patients. Those who want to make a real difference in diagnosis and treatment to improve quality and possible extension of life have developed “Trends in Treating CLL” on behalf of all people living with CLL who cope with this incurable and devastating disease.
Our special thanks to Dr. Ronan Foley, MD, FRCPC, for chairing this conference. Dr. Foley is a clinical hematologist at the Jurvinski Cancer Centre, Director of the Stem Cell Laboratory and Chair of the Clinical Trials Network of the Canadian Bone Marrow Transplant Group (CBMTG), as well as an Associate Professor of Pathology and Molecular Medicine at McMaster University.
We are anticipating over 300 attendees! To register, please fill out the registration form below or call 1 (866) 585-2873.
SCIENTIFIC SESSION: Friday, April 24 10:00 am – 5:00 pm
For healthcare professionals and interested patients. This session eligible for CME accreditation.
Agenda (lunch provided)
1. Dr. David Spaner – Biology of CLL
2. Dr. Neil Kay – Prognostic Markers
3. Dr. Spencer Gibson – Canadian Biomarker and Tumour Bank Initiatives
4. Dr. Joseph Flynn – How to Best Use New Drugs in B-CLL
5. Dr. Bill Weirda – New Therapies
6. Dr. Brian Leber – Allogenic Transplants
7. Dr. Graham Fraser – Clinical Trials
8. Dr. Shelly Gunn – Genome Testing with HemeScan
9. Dr. Bill Evans – The Cancer Drug Approval Process in Ontario
10. Panel Discussion – Challenging Cases From Audience
Friday Evening Dinner: Speakers: Dr. Chaya Venkat and Dr. Brian Koffman
PATIENT SESSION: Saturday, April 25 9:00 am – 4:00 pm
For patients, family, friends and interested healthcare professionals.
Agenda (breakfast & lunch provided)
1. Dr. Neil Kay – Prognostic Markers for Patients
2. Dr. Ronan Foley – Current B-CLL Therapy in Ontario
3. Dr. Joseph Flynn – What About New Drugs?
4. Dr. Bill Weirda – What About New Drugs?
5. Dr. Spencer Gibson – Tumour Bank
6. Dr. Susan Leclair – Understanding Blood Work
7. Dave Thomas – My Journey, Patient Advocacy
8. Panel Discussion – Questions From Audience
Sunday Breakfast For Patients, Family & Friends: 8:30 am
This conference is provided free of charge to patients and caregivers. If you would like to make a donation to support our efforts, please click here. When entering your donation, please select ‘CLL Conference’ from the Fund/Designation drop-down menu.
21 comments on "It will be nice to meet some of you"
Looking forward to an update.
Penny
Chaya, I had planned to attend the conference, especially since Chris told me you were a presenter. But with chemo, my nephew’s wedding at Lake Tahoe, I had to rethink my plans and decided not to go.
I’m feeling quite well and tend to overdue things and the thought of taking another plane really scares me because I get so ill.
I’ll be thinking about you and also waiting for an update.
Take care
Rita
Hi Chaya,
I would love to hear you speak but, it is too far to go right now. I’m so glad that I was able to meet you at PC’s memorial luncheon. I pray that you are doing as well as can be expected. David told me you were still here in Sedona. I thought of you when I came through a few weeks ago with some out of town friends.
I have been really, really sick for like 4 weeks now. I had a chest x-ray and it was clear but all of my lymph nodes ache and are huge. I have so much chest congestion that I am amazed that the x-ray was clear. I am on my 3rd round of antibiotics. I see Dr. Kipps again on April 7th. My white count has doubled and my lymph nodes have grown a lot. We’ll see what he says. Do you know of an oncologist here in the Phoenix area that would be willing to work with Dr. Kipps? I just seem to “fall through the cracks” with stuff like infections. My family doctor doesn’t take my health serious enough. My only poor mark is that I am unmutated.
Thanks Chaya. I will be thinking of you at the conference. You’ll do a great job. You have SO much to offer. You are the smartest person I know. I really admire you. I wish I had thousands of dollars to send your way!
Fondly,
Lori Dobbins
Kelly and I are coming to the conference, driving all the way from Southwest Virginia! Life can be so grand sometimes. It will be so good meeting the good folks who attend. Now, I must go to MapQuest …
Looking forward to meeting you and listening to you speak. My wife and I have turned to CLL Topics over the past four years for much information. I just recently signed up here with “updates”. I am a First Connection trained volunteer with upstate NY / Vermont chapter of L and L, with specialty area concentration in complimentary / alternative. We are registered and have our hotel room so, once again, can’t wait to attend.
Jim and Gail LeSuer
Thank Chaya for keeping me informed on CLL topics and your speaking engagements. This event is too far for me to attend. Hope that sometime soon you will be in Seattle or Portland Or.
Frank & Estelle Mazukiewicz
Chaya,
I am glad I won’t be sharing the speaker’s podium with you on Friday night. You would be a tough act to follow.
You have my most profound respect for your intellectual and emotional vigor.
It will great to see you again
Brian and Patty Koffman
Aheeem…ahhh…Chaya…for those of us who can’t make it…would a transcript of your presentation be posted later?
William B.
I so wanted to go to this but I can’t this year. I see that the speakers for this conference are top shelf. I wish there was a way I could be there.
Tacking on to what WillB425 says, maybe the speakers at the conference will be video taped or recorded and DVDs or CDs available to purchase. If that is the case, I’m ordering. If someone from the Niagra Falls CLL chapter wanted to raise funds for their cause, this might be a possibility?
I wish everyone who does attend a very rich and rewarding experience.
Hope to meet you, Chaya, down the road. Maybe at Niagra Falls in 2010!
Judy
Thanks for the nice comments folks. I will post a copy of my presentation after I get back from Niagara Falls.
But perhaps I should talk down expectations a bit! There is this CLL patient I have known for more than 6 years. He told me recently that he imagined me as a slender silhouette standing on Sedona’s famous red rocks, silky long dark hair blowing gently in the breeze. (I think he misunderstood my ethnicity, I think he figured I was American Indian).
Then he saw the picture of me and PC attached to an article (“Coping with Grief”) on this website. Oh my! Talk about disillusionment! Reality could not be further from his imagination.
I hope my participation at the Niagara Falls conference does not cause similar disillusionment.
Chaya –
I’ll be at the conference and hope to meet you. I also thank you for the alert on the latest clinical trail. I am considering applying and if accepted may take you up on the offer to stay with your family contacts.
Thanks for you ~all~ you do!
Emily
Chaya,
I have signed up for the Niagara Conference and look forward to your talk and perhaps even meeting you, although I know you will be much in demand. I wrote to you recently and you very kindly replied with explanations of three of the important blood tests used to track CLL.
All the best,
“Marten”
Chaya,
I feel so blessed to have been introduced to your website and to you. Under your guidance it almost feels like I have acquired new caring family. I would love to meet you, but alas will be returning fromm an international trip a couple of days earlier. I too would love to know if there will be audio tapes of the conference.. With warmest wishes,
Elaine
Chaya,
I am a newly diagnosed CLL patient (6 weeks ago) and all I can say is “thank God for you.” I barely knew what leukemia was until I was blessed with it, and now I know a lot more than I ever wanted to – not because of my doctor, but because of finding your website. I had a routine CBC to refill a thyroid RX, and came out with CLL, so the shock was a little overwhelming at first. Now I am spending a lot of time educating myself about this monster, mostly on your website. Right after my doctor left a message with the “good news” that I had the best outcome for CLL with a 13q14 deletion, I had her nurse fax the lab report to me. When I read it, it said “both heterozygous and homozygous deletion of D13S319 are detected.” Then I saw your article “Double means Trouble.” Is that what homo and heter means – double deletion? I wish I could attend the conference and hear you speak, but I won’t be able to. Again, thank you for all the work you do for all of us in the CLL family. Even though my doctor seems to think I’m going to live a long and normal life, at least I’m now knowledgeable enough to know that that may not be the case. Best wishes at the conference and always, Nancy H
Nancy:
Thank you for the kind words. Glad to be of help.
Yes, you got it right, homozygous means both the 13q bits are broken off of the set of two chromosome #13, and heterozygous means one is broken and the other is still present. So, you have two subsets of CLL cells. First set has just one of the 13q snippets AWOL, the second subset has gone on to develop an additional abnormality, in this second set of CLL cells both of the 13q snippets have been broken off. Clonal evolution at work.
Have you had your IgVH gene mutation test done? There is some evidence that unmutated (bad) IgVH gene mutation status indicates a more unstable genome that is more likely to acquire additional defects over time.
But I must point out that not everyone agrees double 13q deletions mean worse prognosis. To my thinking it suggests clonal evolution is happening and that is not good news. But by itself double 13q deletion has yet to be proven conclusively to be of major significance.
Just 6 weeks? I am impressed! You have come up the learning curve very fast indeed! Now THAT is a prognostic indicator worth something!
Chaya,
I am feeling quite honored indeed to have received a personal note from you, and so quickly! To my knowledge, and by the size of my CLL medical file (already), I have had every test possible EXCEPT for IgVH gene mutation. This test seems to keep popping up in most of the literature I have read and I know it is an important one to have done. I am fortunate to have a pretty thorough doctor (although she does seem to act as if my CLL is a pretty tame animal – I’m not so sure…) so when I go for my first “every three months” CBC in May, I’ll ask about having that done. Thanks for the kudos on the learning curve. Sometimes I don’t know if it’s a good thing or bad to want to know every little detail, but it has always been my personality to find out the truth and then deal with it. I have read all of my lab tests, every word, and then looked every single item up to make sure I understood what they meant. My husband said if it was him he would have just listened to the doctor and moved on. Guess that’s just not my style! Again, thanks for everything. I hope I have the opportunity to meet you some day and wish I could have also known your husband. Sounds like he was a wonderful and courageous man. Nancy
BMW215
I made hotel reservations and signed in to register with the conference today!!!! When I received your E-mail update today I just have to be there….and it’s only a 200+ mile drive for me. I do hope I get to meet you and shake your hand, as you have been so much help to me.
John
That is our home territory — from nearby Buffalo, NY. We are getting to BUF on 4/30 so we will just miss being able to check out the conference. Hope there’s lots of good stuff to learn about and share, and THANKS for doing that!
Dear Chaya
Why is Canada so far away from Switzerland? :-) I would love to attend the conference and finally meet the person behind CLL Topics – a project of tremendous value, energy and hope. I’m looking forward to read the copy of your presentation. Although as a swiss it’s quite hard work to translate it properly. But I have been a CLL-Topics reader for about 4 years. And I’m getting better and better in understanding. And my doctor (professor of hematology and head of a swiss hospital) is alway highly impressed by my actual news about CLL :-))
Isabella,Switzerland
My husband’s CLL does not have CD5 positive (he is CD5 negative) which seems to have rendered the oncologist unable to tell us anything about the future of his CLL. Please could someone explain to me how important CD5 positive is in diagnosing this disease. All other markers were the bad ones ie. unmutated IVG, 17 deletion etc.
Could someone please help we feel very lost.
Mum50:
Roughly 7-20% of CLL patients present with a variant of CLL that is negative for CD5. Not much research has been done on this subject. But what little there is in literature suggests the CD5 negative variant behaves pretty much as CLL – in other words, the same prognostic significance of the indicators you mentioned in your comment.
In view of your husband’s atypical (CD5 negative) presentation and his aggressive prognostic markers, it may be a good idea to go to one of the CLL expert centers for a second opinion. Send me a personal email if you want help locating one close to you and would also like to get contact information etc.
Below is an abstract that you might find interesting. It is possible that CD5 negative CLL is a case of mis-diagnosis, some other blood cancer mimicking CLL. One more reason why it might be a good idea to visit an expert center so sort it all out.
Am J Clin Pathol. 1999 Jan;111(1):123-30.
CD5- small B-cell leukemias are rarely classifiable as chronic lymphocytic leukemia.
Huang JC, Finn WG, Goolsby CL, Variakojis D, Peterson LC.
Northwestern University Medical School, Chicago, Illinois, USA.
Expression of the CD5 antigen by neoplastic cells often is considered a diagnostic criterion for B-cell chronic lymphocytic leukemia (B-CLL). However, published series frequently include a number of CD5- cases. We studied the spectrum of CD5- B-cell lymphoproliferative disorders presenting with leukemia involvement and reassessed the prevalence of CD5- B-CLL. We immunophenotyped 192 cases of clonal, small lymphocytic, B-cell disorders involving peripheral blood or bone marrow. Of these, 41 CD5- cases were further analyzed, correlating the immunophenotypic findings with pathologic material and clinical data. Only 3 CD5- cases were classified as CD5- B-CLL. These 3 cases had features unusual for B-CLL, including bright surface immunoglobulin expression, bright CD20 expression, and absence of CD23 expression (2 cases) or Richter syndrome (1 case). The remainder of the CD5- cases consisted of hairy cell leukemia, hairy cell variant, prolymphocytic leukemia, follicular center cell lymphoma, lymphoplasmacytic lymphoma, splenic marginal zone lymphoma (SMZL), small lymphocytic lymphoma with marrow fibrosis, and lymphoma, not further classified. Eight cases remained unclassified, but some displayed features of SMZL. CD5- lymphoproliferative disorders of peripheral blood or bone marrow are unlikely to be CLL and often are classified more appropriately as non-Hodgkin lymphoma in the leukemia phase.
PMID: 989446
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