Dear Dan
Dan,
Please email at bkoffmanmd@gmail.com and I will try to respond more personally.
Please remember when you comment on my blog, I have NO way to get back to you personally if you don't supply an email. That's why I include mine.
For those who have no idea what this is all about, please read Dan's comment after my prior post.
Dr. Rai's treatment is a mix of three string drugs, all known to have the potential to help both CLL and AHA, so it makes good sense in your case. When you say "salvage therapy" it suggests a need for some heavy lifting to clean out a big tumor burden.
Cyclosporin (CSP) has a very weak record in treating CLL (just some case reports and contradictory in vitro results), and sweet smelling rituximab (R) is the same sweet smelling rituximab in both protocols.
That said it, this much less potent combo of CSP and R than the Rai protocol worked like a champ for me in both controlling my CLL and ITP.
HDMP is a whole other treatment, pioneered by Dr. Kipps.
Dr Rai has a lot of wisdom and experience. I would be tempted to follow his lead.
Like I said, drop me an email and we can take this further.
Stay strong
Brian
Labels: Autoimmune disease, decisons
posted by Brian Koffman at
1:12 AM
1 Comments:
Certainly only Dan and his caregivers know for certain what dose of corticosteroids he was given along with R & C for his AIHA, but the so-called Rai protocol calls for use of 12 mg of dexamethasone for 7 days with each cycle.
While 12 mg of dexamethasone is a 'large' dose of a corticosteroid it is nowhere near the level that is given when HDMP (high dose methtly prednisolone) is employed as at UCSD. In those instances the dosage is 1,000 to 1,500 mg of methylprednisolone or more per day for one or more days.
I have noted this "misconception" about high dose steroids frequently when CLL patients and their caregivers post about their therapy. Patients often receive doses of 100mg or so of solumedrol (or equivalent) when they receive rituximab or ofatumumab. To be more correct, this should not be referred to as HDMP. This dose of steroid, especially when given as a single dose, is not that dramatically high and it's effects are relatively short lived.
I would be surprised if anyone outside of UCSD would give HDMP along with R and cyclophosphamide outside of any study protocol. The addition of cyclosporine to this would certainly add to the risks of opportunistic infections.
Incidentally, Dr. Rai et al eventually published data on more than 8 patients given the so called RCD protocol.
Most importantly... Good Luck Dan and remember to always 'look before you leap'
Brian's friend R
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