The survey: Early results
Relax.
Trust me that I am not going to make a critical medical decision by a show of hands. Maybe what movie to see or book to buy I would leave to the collective mind, but nothing that involves flesh and blood.
I will have more to say about this later, but so far the early polling is favoring the slow and gentle approach by 2 to 1 margin.
Here's the link for those who had some trouble finding it in the last post: CLICK HERE FOR SURVEY
I am new to this surveymonkey stuff, but it seems pretty darn simple.
Labels: Gentle versus aggressive survey
posted by Brian Koffman at
1:28 PM
2 Comments:
Being considered here is not just to have a transplant or not. Right now you are asking this question and involving the best experts in the land for advice. This is a true service to yourself and the CLL community at large. I do believe you should keep this question foremost as the very process is keeping you and your team sharp and not complacent. So allow yourself a longer period to keep the question open. Keep your team fully mobilized to have a transplant if your circumstances should change.
Yes this is war - mobilize and be ready at a moments notice.
As to the person who claimed that Dr. Kipps is just a palliative doctor, interested only in easing the patient into a gentle death, let me relate what he has suggested might be my next treatment: Campath. It may be an option if my lymph nodes stay down (a BIG if).
Campath is not an easy drug, nor is it a palliative drug in my situation. It is an attempt to wipe out as many CLL cells as possible.
The HDMP+R treatment followed by Campath has resulted in long remissions with a normalized immune system in some of Dr. Kipps' patients.
The drug trial using ISF-35 plus FCR for 17p- patients has (in a study of two patients, a very small study indeed) resulted in the disappearance of their CLL for up to a year at this point, with further monitoring on-going.
That is not a palliative treatment, either.
Neither is not a palliative approach.
Some people hope that CLL could be managed for a long time without necessarily getting a cure.
And when you remember that the average age of onset of CLL is 65-70 years of age depending on who you believe, getting 10 years of increased survival might be tantamount to a cure, anyway.
A conservative approach is the best, in my opinion.
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