The bad news like Konrad said is that 15% of the bone marrow is lymphoma (ALK+ large t-cell type). In all bad news there is good news and ours is that there is a promising new experimental drug that specifically targets this lymphoma -Crizotinib.
If fevers are not resolved by antiviral treatment I am now receiving for the other suspected condition CMV (could also cause decreased counts in the marrow), we will need to get our hands on that drug.
This is a call for anyone who knows of a supplier, someone doing clinical trials, to help us gain access to this ALK inhibitor, Crizotinib. A network of doctors here are trying to locate it. So far no luck in the area, they are searching further but I thought if we asked you, we may increase our chances, someone always knows someone :)
May each day bring us all renewed hope,
Paulina
All the links and informations please email to me at paulinaswaytohealth@gmail.com so I can act fast and share any info with my doctors. Or simply paste any links below in the Comments section.
Paula,
ReplyDeleteI've tried doing a bit of research on the internet...i know that Pfizer (www.pfizercancertrials.com) is the R&D company responsible for drug testing who has collaborated with National
Cancer Institute of Canada (NCIC) - Clinical Trial Group(Kingston, Ontario)to run some trials of this drug...but you probably already know that. i'm going to keep on reading.
Paula know that you're a constant in my thoughts! Maja and I love you xoxox Keep fighting!!!!
justyna xoxox
Paulina my older sister works for GSK (glaxo smith kline), she is a pharmacutical researcher, i called her in phoenix, she is there for the next 4 days on a conference, hopefully she will have some news if they have access to it of how to get it. You are amazing, luv you Marianna i will msg your inbox as soon as i here anything
ReplyDeletehunee, she messaged me very quickly is hoping to have more news tomorrow,but she said has your doctors gone on clinicaltrials.gov to find any local trials here??? thinking about you, stay strong and positive. Much luv Marianna
ReplyDeleteThere is this trial that Pfizer is doing:
ReplyDeletePharmacokinetic and Pharmacodynamic Study of PF-02341066 (Crizotinib) A CMET/HGFR Selective Tyrosine Administered Orally to Patients with Advanced Cancer
https://www.pfizer.com/research/research_clinical_trials/find_a_trial.jsp?n-state=http://www.emergingmed.com/pub_search_trial_detail.asp?i_trial_sys_id%3d22063%26i_site_sys_id%3d0~~~G!0067070D3F3D!xzM4OOTrn6M%3d~emed-trials~~~@http://syndicator.www.emergingmed.com/Pfizer-A/pfizer_com
Not sure if this is the same trial, but it's supposed to start in Jan 2011. Also not sure if it's multi-center and which centers are participating...
ReplyDeletehttp://clinicaltrials.gov/ct2/show/NCT01121588?term=crizotinib&rank=5
Sorry for the many posts... your doctors likely already know this, but under certain conditions the pharmaceutical companies themselves will release the drug to certain patients on compassionate grounds, based on the circumstance. It may be worth getting in contact with Pfizer directly. I really hope you guys are able to get your hands on it and that it is helpful. Hugs and kisses,
ReplyDeleteLakha, Michal, Ava and Atia
We contacted them directly but it takes time. Yes, it might be possible to get it and we already have forms etc. But who knows how long it will take. We are trying hard as you can imagine. it would be great if we could just buy it around the corner;)
ReplyDeleteKonrad
Egg Vibrator
ReplyDelete