Friday, October 19, 2012

Blog gadget update

I just added a new gadget to my blog called FOLLOWERS. I would love for my subscribers to use that gadget by clicking on the "Join this site" button, so that I can see who is following my blog. I have had over 1,000 people viewing my blog, but I don't know who you are unless you have posted a comment, emailed me personally, or if I have seen you in person. Thank you in advance.
-- LV
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8 comments:

  1. Stetson'sMomOctober 19, 2012 at 4:02 PM

    So glad I found your post. I also have been diagnosed with CLL/SLL (Nov 11), after a brief diagnosis of mono. I do have the 17p deletion as well. I have completed 6 rounds of FCR, and have been referred (fast track) to a transplant center. The transplanters recommended that since quality of life is good and I am in partial remission, that I wait for mini-allo until tests indicate that cancer is returning. There is a lot of information out there, but so hard to apply to my own situation.

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  2. AnonymousOctober 24, 2012 at 7:16 PM

    Thank you for blogging your experiences La Verne. My husband is also 17p deleted and currently receiving chemo FCR and has only received 2 cycles in 5 months due to low WBC. I would be interested to know when the review of clinical trial you are on re-opens and accepts new patients. Very good luck to you!
    Diane

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    1. Dr. La VerneOctober 24, 2012 at 9:11 PM

      Dear Diane:

      The first thing I would like to know is if your husband is under the care of a CLL/SLL expert or only a local hematologist/oncologist. I was curious why he is getting FCR when it has a low response in 17p deleted patients. I am also concerned about the low WBC count. Has he had a bone marrow biopsy to see what is going on? A CLL/SLL expert is imperative.

      You can virtually connect with Chris Dwyer at http://cllcanada.ca/2010/index.htm, as well as his facebook group called "Bad to the Bone." Chris has a list of CLL experts you can contact around the world.

      As for clinical trials: Please go to clinicaltrials.gov to find information about new clinical trials and what qualifies a person to participate. You can also contact Dr. Mohammed Farooqui directly at 301-402-1806 or email him at farooquimz@nhlbi.nih.gov, if you want to know about NIH. Dr. Farooqui is an amazingly responsive physician.

      I hope this helps. Please let me know if there is more information you need.

      -- LV

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  3. AnonymousOctober 25, 2012 at 6:33 PM

    Thanks for your response...I feel like a rookie at this...the whole CLL thing is very confusing especially the more you research it. We do have a CLL expert that is on Chris's list (we are members of the Bad to the Bone group - love the name :-) and as much as we like our Doc - I am not sure that FCR is the way to go bearing in mind how it's affecting him and resulting in NO treatment. We will contact Dr Mohammed Farooqui, the worst he can say is no - right?

    In your bio at the side of your blog, you mention you researched and networked with leukemia experts - can you share with us what you did?

    Thanks again!
    Diane

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  4. Dr. La VerneOctober 26, 2012 at 12:42 PM

    Dear Diane:
    I actually left my wonderful job at Purdue University and searched for experts in the United States. I then read some of their published academic research papers to see who was on the cutting edge. I contacted several of them by email and phone (NOTE: Contacting by phone was almost an impossibility). I visited some of them.

    Since little research was done on leukemia patients who have initially been diagnosed with 17p deletion in 2009, I read every article I could get my hands on. I knew that it would not be wise for me to read articles that were more than five years old, because I knew I would be horrified at the findings.

    Since then there seems to be a focus on 17p deleted patients and I couldn't be happier. Go to the published abstracts and posted articles from the ASH (American Society of Hematology) conference (usually in December of the year), and ASCO (American Society of Clinical Oncology) conference. Also go to http://clltopics.org/index.php for information, and Andrew Schorr's Patient Power website (http://www.patientpower.info/).

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    1. AnonymousOctober 31, 2012 at 6:02 PM

      Thanks LV :-) I'm on the right track then, just a little slower. We head back to the clinic tomorrow for the bone marrow results and go from there. Sending lots of positive thoughts your way to enable you to get your meds.

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  5. joycefparry@gmail.comApril 22, 2013 at 11:07 AM

    Hi - my husband and I have loved your blog and it has helped us greatly. My husband just started the NIH clinical trial and took his first pill last Thursday. He is trying to keep working and is interested in using his vacation days as efficiently as possible. We're interested in your experience with a one day trip back to the NIH? We live in Salt Lake City. Is there an email address where we could correspond? Thanks so much for sharing your experiences!!

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