Category: Patient Advocacy

Date Title & Description
10/06/2012 Au revoir, not good-bye.

There is a time for everything.  And now it is time for me take a sabbatical – which means there will be big changes in how we run CLL Topics and Updates.  This is just au revoir, I hope, not good-bye.  Please read below for what it all means to you and the services we offer.

09/19/2012 Compassionate use access programs

Compassion” has become an old-fashioned word.  It seems not too many pharmaceutical companies make any decisions based on it anymore.  Allow me to share with you my recent attempts at getting compassionate use program established at one of our largest pharmaceutical companies.

06/20/2012 End of Chemotherapy in Our Lifetime?

Last month I was invited to speak at the CLL-PAG conference in Canada.  One of the other speakers was Dr. Mike Keating.  He prophesied that in the next 2-3 years chemotherapy as we know it today will become obsolete and we will begin curing CLL patients without such barbaric & toxic stuff.  Here is the technology that he thinks will do it.

05/19/2012 Notes from a Richter’s Transformation Survivor

A certain percentage of patients undergo the dreaded “Richter’s transformation” into a far more aggressive lymphoma.   But it is not an automatic kiss-of-death.  Here is the real-life story of a patient whose experiences should give you reassurance.

03/12/2012 Skin Cancer and Vitamin A

That is not a typo, I do indeed mean Vitamin A and not the usual Vitamin D story that we have discussed umpteen times before.  It seems Vitamin A may help reduce risk of aggressive melanoma.  Who knew.  And have you heard of Merkl Cell Carcinoma, a skin cancer just as deadly as malignant melanoma?

02/20/2012 FC + Campath for Chemo-Naive Patients

Here is a perfect example of a drug therapy regimen that is more dangerous than the disease.  You are all familiar with FCR, the present day gold standard. This French clinical trial substituted Campath in place of of Rituxan.   Big mistake.  Don’t let anyone talk you into this combination – it might kill you sooner than the CLL.

01/19/2012 Controversies in Communication

You think it is hard to talk to teenagers?  Try to walk in the shoes of an oncologist trying to talk to a cancer patient with unrealistic expectations.  Conversely, imagine talking to a dismissively paternalistic physician who is tone deaf to the needs of his patients.  The article we review below does an excellent job of discussing these tough issues.

12/30/2011 PCI-32765 trial at the NIH – Update

This is an important trial – one that we really need to monitor going forward.

11/16/2011 “Incurable, Invisible and Inconclusive”

That is the title of a recent article in the European Journal of Cancer Care.  Sounds like something you may recognize?  Read on.  You are not going crazy, you are not  the only one feeling frustrated.

10/25/2011 (Almost) Everything You Need to Know About CLL

The CLL guidelines formulated by the International Expert Working Group are the state-of-the-art guidance on how to diagnose, evaluate and treat our patients. Physicians who are not familiar with these guidelines are not likely to be your best bet.  This is stuff you and your oncologist should know in your sleep!

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