We met with Kev’s Target Therapy Dr last Wed and it was fairly informative - most of which confirmed what we suspected, but had hoped against... She explained his situation is very complicated with competing problems. For example, he is taking high dosages of Dexamethasone to keep the brain swelling down and provide a general feeling a wellness, but it also represses the immune system and masks the symptoms of infections – hence the more recent problems; The Lovenox that was prescribed soon after he became paralyzed to prevents blood clots exacerbates the bleeding in the brain …plus a few others... Seems like all the decisions we make these days are based on “lesser of evils”.
She is pretty certain that all the problems with keeping the blood chemistry level is because the cancer has invaded his bone marrow and it can no longer produce blood effectively. This could be verified by taking a bone marrow sample, but we all decided against it. It didn’t make any sense to expose him to the risks involved when the results wouldn’t change anything - we’ll just keep up with the weekly blood checks and supplements.
We also discussed our current options. The ANG1005 study is reopened, but she was reluctant to include Kev. They have one patient, who will begin the protocol, but she’s not convinced the formulation problems are truly fixed and she didn’t want to restart Kev only to pull him off it again. So she proposed a different study – Revlimid with Valporic Acid. Revlimid is an approved target therapy drug for multiple myeloma patients and Valporic Acid (Depakote) is a standard anti-seizure drug, so the “experimental” part is combining the two. Most trials exclude patients with brain or CNS involvement, she explained, so this is the last trial available that we haven’t yet tried. She also brought up the option of Hospice, but that would require stopping treatments and Kev would like to continue with treatments as long as options exist. Even if it doesn't directly help him, what is learned from the trials may help someone else in the future. Research is the only way to stop this dreaded disease.
Next week we go in for a PET scan and if everything goes OK, he’ll start the treatment.
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4 comments:
Good luck with the new treatment. Can't wait to hear the good result.
Glad to hear there's a new treatment option. With your strength of spirit, my money is on you. Lots of love from all of us to all of you.
Kathy Miller-Pehr
Have they considered MDX-010. Look at this woman's case study:
http://www.medscape.com/viewarticle/579416_1
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I really enjoyed my visit last weekend. It was fun tracking Gustav. Although it would have been exciting to be a part of your evacuation plan, I am glad that the only local impacts of Gustav were your neighbor's and the Yacht Club's boarding of windows and the need to secure K&N's boats! AJ was disappointed that I did not try to reclaim the bike trail from the water mocassin--well, maybe next time I will be ready to take it on. Tell Kelden that I am still singing the Abba songs! It was great to see you all! love, Michelle
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