In May 2017 my husband Jack Davis was diagnosed with terminal Metastatic colon cancer. We were told life expectancy would be 2 to 6 months to live. Palliative chemotherapy ( Folfox or Capeox) was offered to us as an option to keep cancer at bay so that my husband could live a little bit longer, probably by 6 -12 months, this was such a small percentage that this would work. Then we were told about a new drug Keytruda, Immunotherapy Pembrolizumab. A new drug that is still experimental. Which is not funded in New Zealand.
A new drug that has had good results on some terminal Cancer patients. A total of $78,211 was needed to pay for the drug before St Georges Hospital in Christchurch would put us onto the cost patient programme.
Then after paying for the drug we would still have to raise the money for Administration cost and GST cost of the drug for the next 2 years. You have to be on the drug for up to 2 years for it to work, so that the results will be NED ( No Evidence of disease) .
Prior to receiving this news my husband has been fighting cancer for the past 4 years. In December 2013 he was diagnosed with tongue and throat cancer and in March 2014 he had intense chemotherapy and radiation treatment. He battled this cancer and was all clear until 2015. November 2015 he was diagnosed with colon cancer. He had all of his large intestine removed and had a ileostomy for 9 months ( a bag) . November 2016 he had a successful Reversal loop Ileostomy.
The surgeon who preformed the operation told us that my husband was too young to have so many cancers in his bowel. Possibility that he may have Lynch Syndrome. Lynch syndrome is a rare inherited condition that increases your risk of bowel cancer and other cancers. Lynch syndrome has historically been known as Hereditary Non Polyposis Colorectal Cancer (HNPCC). A number of inherited syndromes can increase your risk of bowel cancer, but Lynch syndrome is the most common. Our eldest daughter has Lynch and our 3 other children have yet to be tested. My husbands mother in the UK has Lynch and recently under went a full hysterectomy as a prevention to getting cancer herself.
My husband was tested positive with Lynch syndrome PMS2+/- MLH1
May 2017 My husband had a routine PET / CT scan and the results showed multiple FDG avid mesenteric, periportal and peripancreatic Lympadenopathy, and serosal disease of the bowel and the right iliac fossa. In Non medical terms, sorry you have terminal cancer. This news was the worse day of our lives. We were told, "Sorry you have maybe 2 to 6 months to live." Our lives were shattered.
So we were told about this new drug, that's not funded in New Zealand where there is some evidence that it works on patients with colon cancer with deficient mismatch repair, Lynch syndrome ( which my husband has ) .
So far we have raised the $78,211 from generous donation and from us cashing in our pensions early and selling what ever we can to raise the cash. We have paid $88,489 so far to St Georges Hospital in Christchurch and finally we are on the cost patient programme.
However we still have to pay for Administration cost and GST for this year and next year. We just cant afford these huge payments anymore.
The cost of the admin and GST that we have to continue to pay every 3 weeks totals to $1302.25 , that's a total of $18229.12, we have to find to bring us to the end of the year.
For scans we have to pay $1030 every 12 weeks. ( 4 scans to go for this year ) $4120.
For the doctors fees, we have to pay $158.00 every 3 weeks. That's a total of $2212 to have to find to bring us to the end of the year.
Total for this years treatment fees comes to $24,561.12 that we have to find.
Prediction costs for next years ongoing treatment costs these are the figures.
For next years treatment as have to be on the drug for 2 years we have to find. an extra $22,569.38.
For next years doctors fees, we have to pay $2686, as have to stay private we have been told so many times.
4 times scans $4120.
Total for next years medical cost would be , $29,375.38.
Total cost for the 2 years treatment $53,936.50.
All we are hoping is for help for my husband to continue to receive this drug. St Georges Hospital did tell us, if we cant pay the Administration and GST charges that they will stop the drug. I think it is so cruel that a hospital can say that. Why cant the government fully fund it so that we can go back into the private sector, then we will not have all of these ongoing costs. Apparently PHARMAC has full control over this drug and the government cant do any thing. So Pharmac make the money and cancer patients die because they cant afford it, It is so wrong make me so angry.
Thank you if you can help in any way , all I want is my husband to live and to watch his children grow up. He has fought this battle so many years and this treatmnet is finally working . He deserves to have the opportunity to live. He is an amazing husband, Dad and Friends to many peolpe. Please help our campaign.