Dr. La Verne's Awesome Adventure: CLL/SLL Resources

Thursday, October 29, 2015

CLL/SLL Resources

Here are some resources for patients and caregivers:

http://www.cllsociety.org

CLL Society

Dr. Brian Koffman

Note: Dr. Brian has CLL del 17p and has been on ibrutinib (IMBRUVICA) a few months longer than me. He is a patient of Dr. Byrd at The Ohio State University. Dr. Brian was a family doctor in southern California.

http://www.patientpower.info/

Patient Power

Andrew Schorr

Note: Andrew was one of the first to participate in Dr. Michael Keating’s FCR trial. He has successfully been in remission for a couple decades. His background was in medical writing.

Here is my page: http://www.patientpower.info/video/dr-la-verne-abe-harris-i-live-in-the-here-and-now

My blog:

http://drlaverne.blogspot.com/

La Verne Abe Harris, Ph.D.

Note: My journey with CLL

Fiscal help to access IMBRUVICA:

YOU&i™ Support Program

http://www.imbruvica.com/youandi

To learn more about patient enrollment and eligibility, visit youandisupport.com.

You can also call 1-877-877-3536, Monday through Friday, 8 am - 8 pm ET

Note: It ended up being $10 a month for one of the patients I helped get access. She had commercial insurance as the primary prescription insurance. I called and found out that a patient who is under Medicare may also qualify for the YOU&I Support Program, as long as they have a commercial insurance as the primary prescription insurance. Great news!

Chronic Lymphocytic Leukemia ACOR ListServe:

http://www.acor.org/listservs/join/39

4 comments:

Bryan SentesOctober 29, 2015 at 12:38 PM
Another solid source is surely Dr. Sharman's CLL & Lymphoma Blog http://www.cll-nhl.com/ & given your belief in complementary therapies, I'm surprised you don't include any links to sources of information for integrative oncology, such as Keith Block's Life Over Cancer http://www.blockmd.com/blog or Brian Lawenda's Integrative Oncology Essentials http://www.integrativeoncology-essentials.com/
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UnknownMarch 10, 2016 at 11:06 AM
Dr. La Verne, I've been following your blog for a while now and am SO glad to see you back; but am happy that you are living life. My husband was diagnosed with CLL p 17 deletion in May 2014. Dr. Jan Burger at MD Anderson immediately put him in a clinical trial for ibrutinib. So far it's working, thank God. It's wonderful to see him living his life, as he did before his diagnosis. We go back to MDA in May for all of his testing. If it all comes back good, instead of every 3-month visit, it will be every 6 months. Thank you so much for your informative blog. It's been a comfort to me since the beginning of this journey.
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About me

Hi! My name is La Verne Abe Harris.

I was a creative director and art director for many years until I switched careers and became a university professor at Arizona State University and Purdue University. I had a research and development lab “The IDEA Laboratory,” which focused on creative thinking, interactive media, and animation.

I used to be referred to as “the EverReady Bunny” – highly energetic and productive. One day I went to my internal medicine physician complaining of fatigue. I thought I either had mononucleosis, was working too many hours, or was feeling the onset of aging. He did a blood test and found my white blood cell count to be elevated. He ordered a cytometry test and thought my diagnosis of CLL/SLL was a mistake, because I wasn’t a white 75 year old male. I was a Eurasian (Half Japanese and half German) 57-year-old female. He had a physician friend review it again under the microscope to confirm the diagnosis.

Dr. Chadha said that we are all dealt a different hand of cards from the moment we are born. It is not what we are dealt that is important, but how we play it. Wise words…

I was told that some people with CLL/SLL live 20 years plus and die with leukemia, not from it. All would be well, as long as I was not diagnosed initially with 17p deletion. According to one expert, an initial diagnosis of 17p deletion would mean I would be hospitalized within six months of diagnosis and would not live more than two to three years. I wanted to be one of the “lucky” ones. I found out a month later from a FISH test that I was not. I was diagnosed with 17p deleted, chemo-resistant leukemia. In 2009 there were no options for me. I was given a poor prognosis.

I persistently researched and networked with leukemia experts around the country. I not only got a second opinion, but also a third and a fourth. Dr. Michael Keating (the father of FCR) at M.D. Anderson in Houston took me on as a patient and has kept me informed on the research that is being done on 17p deleted patients. Dr. Keating told my husband Carl and I about Ibrutinib (PCI-32765) when it was first being tested.

Along my journey I have also run into a few Dr. Buzzkills. That is the term of endearment Carl and I have given to physicians who have poor bedside manners, who have coldly reminded me of my impending death, or who have been ticked off because I have ruined their research by being an outlier on the statistical charts. People, it is YOUR life! Do not sit idly by. Be actively involved in your health decisions.

God only knows why I have been so resilient, but I am here today. I am a person of faith, who also loves science. I believe in the synergy between body, mind, and spirit; therefore, I believe in modern medicine and complementary treatments, such as Reiki, reflexology, meditation, prayer, and herbal supplements. I also know that the only thing I really have control of is my attitude.

I feel blessed to be B22 in the Ibrutinib (PCI-32765) clinical study in Bethesda, Maryland. This blog is a testimonial of my journey with the BTK inhibitor at the National Institutes of Health (NIH). And now my journey is continuing with venetoclax and obinutuzumab.

Dr. La Verne's Awesome Adventure

Thursday, October 29, 2015

CLL/SLL Resources

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