I'd like to find other families who have lost loved ones to HSTCL. I'm uncertain how to do this, but it feels important. There are probably only about 40 people worldwide in the last 4 years who have lost their lives to this particular cancer and probably most, if not all, had been taking TNF blockers (Remicade, Humira, Imuran, 6 MP, etc.). There are so few of us and we have all fallen (or been kicked) into the cracks. At one time there was message thread on the Cancer Survivor Network which is how a few of us found each other over two years ago. Now, apparently the link is "broken." There should be a way that we can find each other. All of our lost loved ones deserve to have their stories told.
I am listing a few url's that are linked to Maxx's story.
The first is to a small private press that is publishing an anthology of motherhood and loss in October of this year which will include a piece I wrote in 2007, shortly after Maxx died. The link below will take readers to the Fat Daddy's Farm blog and directly to an author profile I was asked to submit about myself.
The second link below is to a another woman's blog, Loraine Ritchey, who lost her 29 year old son to Lymphoma two years ago and who was kind enough to post Maxx's story. This piece, describes in more detail what happened to Maxx, why and how.
Information on the possibility of incurring T-Cell Lymphoma as a result of the use of TNF blockers and immunosuppressive medications can be found on the FDA site below. THIS IS EXACTLY THE INFORMATION WE DID NOT HAVE when Maxx was first prescribed these drugs in 2004. It is likely that the makers of these drugs were aware of the potential for deadly side effects, though action was only taken to label these meds (and then only with incremental information not specifically mentioning HSCTL until 2008 and 2011) AFTER the families of victims and/or doctors themselves reported injury and/or death directly to the FDA as an "adverse" event.
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