Are there possibilities other than stem cell transplant in Canada for CLL with 11Q deletion?

My son lives in Canada. He has CLL stage 4 with 11Q deletion. He was taken off Ibrutinib because his Neutrophils were getting low. Then he had a cold and swollen lymph nodes on his neck, and an enlarged spleen.

He is now back on Ibrutinib on a reduced dosage of 2 pills/day.

His doctor says that according to the counts it looks like progressive CLL and hopes getting back to Ibrutinib will take care of the situation.

She also said that the lymphs bumped up to 7 which we don't know what it means.

He underwent chemo end of 2013, but was refractory to Fludarabine. He was in remission for about a year and a half. His doctor never mentioned the new drug ABT-199 Venetoclax. She went straight to the possibility of bone marrow transplant.

I find this a bit shocking as there are a few new drugs on the market that I think she should first look into.

Your input will be appreciated. 

Thanks. Karen

19 Replies

  • Hi Karen and welcome to the site. It seems that your post got stuck in the system.

    I am in the UK so am not sure what is available in Canada but we do have some very knowledgeable people who should be able to help you more thanI can. I wish your son and you all the best for the future and hope things can resolve for you both in terms of your son's treatment options. 

    My best wishes.


    Ps Do you have any blood test results you could post as this can help with any advice advised. Only of course if you feel happy doing so. Sue


  • This is what his doctor said:

    The neutrophil count is ok, but the Hb is 138, plts are 85 and the lymphs bumped up to 7. On the whole the counts look like progressive CLL. Hopefully with being back on the ibrutinib the counts will improve.

    Thanks Sue. 

  • Hi Karen

    RememberI'm no expert, but  HB just about looks OK, platelets are low and lymps are over. This could be down to infection but normally these readings are monitored over time and your consultant would have a better understanding of things. I recommend (if you do not already) keeping a record of all blood tests because over time it does shows trends and what is happening in terms of this disease. Hope this helps and that your son gets on well on the reduced dose ibrutinib.

    Take care


  • Thanks Sue. I read that the amount of Ibrutinib is relative to the patient's weight (2.5mg/kg) that is needed to achieve full occupancy or inhibition of BTK, the target of Ibrutinib.

    I hope they are right. 

  • We all hope they are right. Hang in there Karen, if nothing else it will give your son time, until other treatments  are approved. 

    Thinking of you both. Best wishes. Sue

    Remember post anything, anytime someone will always try to help.


    Ys Enjoy your weekend.

  • Hi Karen

    The  Ibrutinib drug label, does not indicate doseage by weight,  do you have a source for the 2.5mg/kg?

    For CLL the recommended dose is given as 3 capsules once a day 140 x 3 or 420mg...

    There are dose reductions for various reasons, but again a patient's weight is not a consideration...

    I'm trying to determine if this is new information ... perhaps a lower dose could be my option also...



  • Chris, I'd suggest this is where Karen saw the 2.5mg/kg reference:

    '12.2 Pharmacodynamics

    In patients with recurrent B-cell lymphoma > 90% occupancy of the BTK active site in peripheral blood mononuclear cells was observed up to 24 hours after ibrutinib doses of ≥2.5 mg/kg/day (≥ 175 mg/day for average weight of 70 kg). '

    I thought Jeff Sharman mentioned this in his blog on Ibrutinib dosing as I'm sure I've seen it referenced elsewhere, but I couldn't see mention of it there...


  • Thanks Neil... that explains it... it is not the oral dose given, but the way it functions... or the effect it has...

    Dr. Sharman discusses it here... relating patient dose to BTK occupancy...

  • Hi Chris,

    This is where I found it, actually in HealthUnlocked (2 years old posting):

    Take care

  • Thanks Karen... certainly worth trying a lower dose in your son's case, but patient dose and Pharmacokinetic dose are different but obviously related...

  • Hi Karen

    Venetoclax is not approved in Canada or the U.S. for second line CLL, only -17p deleted in the U.S.. His best bet would be a clinical trial...

    What province is he in?

    The CLLPAG of which I am a member, is starting the patient part of the input process for Ventoclax in Canada, but it takes time... It must first be approved by Health Canada, then it is reviewed by pCODR, and they recommend if the drug should be funded by the province.  Then each province starts negotiations with the drug company on price etc... very lengthy...

    If you wish to message me I can provide you with more information.

    Idelalisib, has been stuck in funding talks since last October and no provinces

    are funding it... yet. It would be a possibility... perhaps.

    His alternative might be to go the NIH in Bethesda, I know few Canadians

    who have been treated there in clinical trials.

    Hopefully the ibrutinib will work for him, it didn't for me, and I had to go off due to bleeding issues.


  • So Chris, what did you get to replace Ibrutinib? My son is in Ontario.

    I will definitely look up the trials in Bethesda. Thanks.

  • So far nothing... my counts are in the 60-70K range, and I have no side effects...

    Cupboard is looking pretty bare... I might try bendamustine/rituxan   ( only bendamustine is currently funded ) when the time comes, but I'm both fludarabine and rituxan refractory, plus I don't have the clinical trial option, due to Richter's and I'm too old for a HSCT...

    I was hoping for Idelalisib funding, but that is unlikely to happen now, in light of some recent problems with the drug.

    Your son should get a second opinion, from either Sunnybrook, PMH  in Toronto or Juravinski in Hamilton, they all have CLL experts and are running clinical trials... in Ottawa The General has two CLL specialists...


  • Idelalisib has had problems with this particular trial. Is it a valid reason to refuse it to patients who do need it, even in a lower dosage?  

  • Nobody is refusing anything...

    Idelalisib is in funding negotiations and has been for 6 months, it simply is not available to Canadians at the moment funded by the provinces, and from what I gather Gilead has no compassionate access plan. It may be available under private insurance and Quebec might be funding it, but Quebec is outside the pCODR system.

    Here are all the details on Idelalisib (Zydelig) funding, if you want to wade through it

  • Chris,

    Will ACP-196 be an option for you and for Karen-Mary's son?  I know it is still in clinical trials (exciting post from you earlier on this), but any guesses on how long before we see FDA approval and ultimately use in Canada?  I know I am asking you to predict the future, but it seems like this second generation drug may offer a lot of hope.

    Thanks and be well,


  • Short answer ...No Nan...  😜not unless there is a clinical trial...

     Drugs are first approved by either the FDA or the EMC in the EU, before they go through the approval and funding process in other countries.

    Historically in Canada this takes 18-24 months or more... it all boils down to cost and unmet need.

    My guess is acalabrutinib (ACP-196) will be FDA approved late this year... but it might be for 17p only , I haven't read the application...

    In Canada we will see Venclexta first, without a doubt, but when... who knows. 🔮

  • Thanks for your insights Chris.  Your depth of knowledge never ceases to amaze me.  


  • Thanks... been at this for a very long time.

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