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Re: Melanoma out of control

Forums General Melanoma Community Melanoma out of control Re: Melanoma out of control

    Charlie S

      Hi there Retired, most of the side effects related to ipilimumab are auto-immune type disorders, Deep Vein Thrombosis, in your case would seem to be of a higher concern.

        Here is a link to an on-line patient community that is devoted excluisively to ipi side effects that includes a bulletin board which you find helpful.

      Also, this BB recently changed format and many people are adjusting to how to use it, so I would kindly suggest for more responses that you post anew and put the subject as "IPI Side Effect Experience/Results".

      It isn’t clear to me about your disease progression………are the three or four spots you mentioned new on this scan or is it just the armpit (axilla) node that grew?  Were you on the 28 day regimen of Temador?  How long since your last scan and what was the difference?

      I am no doctor, but I have had melanoma for now 23 years, 14 of which have been Stage IV and still have active disease, so the thoughts/suggestions below are based on that.

      IPI:  …… an anti-CTLA Blocker, is not a silver bullet and does take some time to work……..if it does; and in a subset of patients,it will, but melanoma is a transient disease and repeatable responses amongst all melanoma patients is still elusive.  This is not to say it is not an advancement, but it is not the be all to end all and it is a crock of shit for a doctor to think and therefore suggest it is and just say "oh, we’ll wait on that to be approved".  As Tim mentioned, IPI (though still limited) IS available for compassionate use immediately, so it would seem a proactive doctor would explore that RIGHT NOW.  This approach will take time.  Probably 6 to 8 weeks at a minimum.  I have been offered enrollment in IP trials but decilined because the science did not make sense in my individual case, mainly because time was of the essence.

      Inhibitors: Such as BRAF, MEK, PTEN, cKit, and NRAS are options to explore via clinical trials.  These targeted mutations offer options as well.  If they work, they usually work with great speed, but durable response is problematic.  You would be wise to be tested for these five mutations.  This can be done with existing tissue from your pathologist or new tissue could be obtained from any one of your lesions.  This approach will also take time and also will probably take 6 to 8 weeks minimum.  Since I do not have any of the beforementioned mutations, I have not and will not be eligble to recive them.

      Since IPI or any one of the Inhibitors takes time to get, receive and administer,  below are some other thoughts to keep after melanoma in the meanwhile.

      Temador (temozolomide) which you have been taking, is thought to disrupt the cellular activity of cancer, though it is not completely understood how. It is sometimes combined with Thalidomide(thalomid) which is thought to restrict  tumor feeding blood flow for synergy.  Lomustine, another cellular disruptor has also been added to the mix as an approach..  This three drug combination can be prescribed and adminstered immediately by your oncologist.  Beyond the side effects you have all ready experienced with Temador, there would be few more………other than having to sign on to using appropriate birth control measures .  I have used these three drugs.

      Low Dose IL2:  There is much discussion about HI-Dose Interleukin 2, but not so much about lo-dose administration.  Lo-dose can be a series of self injected interleukin 2 so as to have a combined immune response over time rather than an escalated dose to discover immune response in a short period of time.  The advantage of lo-dose is the absence of the sometimes life threatening side effects generally associated with hi-dose.  Lo dose is appropriate for those with heart disease or breathing issues.  I have done hi-dose as well as lo dose IL2.

      Intra-Lesional Direct Injection:  This is shooting drugs right into the lesion in question.  Interferon alpha 2-b, interferon alpha and 1-A as well as Interleukin 2, 7, 11 and 21 have been used.  I have done this with all the drugs mentioned. Other than some minor skin irritation and being generally irritated by having to shoot up, side effects are minimal.

      Doctors: I have had the pleasure of firing more doctors than most people have ever had in their entire life.  You might consider indulging yourself in that euphoric experience if you are not satisfied with what your doctor is telling you or doing to you.  This is not to say that I think all doctors are assholes, because they are not, but if they cannot get or are unwilling or unable to answer your questions when you ask or recognize that they work for you and are getting paid handsomely to do so, then fire them.   At the very least get another opinion. 

      You are driving the bus here, it is your choices because it is your chances.

      I know this is long and probably more than you wanted to know and if you don’t like my thoughts; well, that’s okay too, because all I would like you to do is create YOUR thoughts and not be constrained by just what your doctors say.

      You may well live longer than all of us or you may not, but it is up to you to pave the path.

      Hope this helps.

      Charlie S






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