Maddielolo wrote:Very interesting. and given toxicity, clinical response, and approved med, this may be better option than trials as first option following conventional chemo. Any duration reported study?
dudette wrote:WHOA! Thanks for highlighting this study.
I have an appointment lined up with NCT in Heidelberg the week after next. Initially it was only meant as a general discussion whether they will take me in as their patient (I really need an oncologist or even better an oncological team that has a treatment strategy that goes beyond my current chemotherapy) but it came about that I will also be screened for two trials.
I'll be on the phone tomorrow to ask about the Phase 2 trial and check when they start screening patients. I am so excited that you brought this up. Thanks
dudette wrote:Will keep nagging them. And if need the principal investigator will receive a surprise visit from me in his office next Tuesday
H is for Hawk wrote:I tried to get my integrative doctor to prescribe off-label Maraviroc to me, but he stongly advised against it. Normally he has been supportive for off-label use of other drugs, such as metformin. He said the FDA requires the manufacturer to label the boxes with the ominous black box warning, in this case it is:
"Black Box Warning:
HEPATOTOXICITY has been reported with Maraviroc use. Evidence of a systemic allergic reaction (e.g. skin rash or elevated IgE) may occur prior to the development of liver toxicity. Patients with signs of hepatitis or allergic reaction should be evaluated immediately."
One has to weigh the risk of liver damage with the possible benefit of tumor shrinkage. There is conflicting advice. The Maraviroc clinical trial in Heidelberg, Germany (NCT01736813) write-up on clinical trials.gov is more positive, where the site investigator states Maraviroc is "a drug has little side-effects and toxicities even on long term treatment".
DK37 wrote: - so they are really apples and oranges (in terms of both potential toxicity and potential efficacy) and should be treated as such...
"... in the context of an informed consent, doctor/patient relationship with an accredited Oncological professional, who KNOWS the relevant details of their own patient's exact situation, in the context of existing medico-legal efficacy and reality. "
CRguy wrote:DK37 wrote: - so they are really apples and oranges (in terms of both potential toxicity and potential efficacy) and should be treated as such...
AND, my addendum here, whose emphasis is underlined and hopefully UNDERLINES DK37's post"... in the context of an informed consent, doctor/patient relationship with an accredited Oncological professional, who KNOWS the relevant details of their own patient's exact situation, in the context of existing medico-legal efficacy and reality. "
AND not just .... well folks YOU figure out the rest
BUTT I am / have also been an "alt" / integrative practitioner and when I was Dx
I stuck with existing medical practices ..... WHY ?
do you feel me biting my tongue folks ?
DK37 .... Harmony bro'
ALWAYS on the Journey with you
YOU ROCK buddy
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