bigugli Posted February 27, 2015 Report Posted February 27, 2015 I was wondering the same. Over the past week and a bit, Judy has received most her test results, all negative, over the phone. No extra trip to the cancer clinic. No lost day for us. No waste of booking space for a very busy cancer clinic.
irishfield Posted February 28, 2015 Author Report Posted February 28, 2015 2 sessions down and we've left Jen in the city by herself to hopefully enjoy her birthday bash tomorrow. Was hard to do so, but what she wanted. Gives her Sunday to rest and then one of her friends takes her to radiation on Monday am. Our younger daughter Kristal is taking Monday afternoon off work to go to Toronto and take Jen out to a concert at Massey Hall, then will drop her off at Sunnybrook on Tuesday morning for Radiation, before heading for Barrie to work. We're back on to pick Jen up at Sunnybrook Tuesday after Radiation and continue through the week, as she has 8 more days of radiation to go.
Rich Clemens Posted February 28, 2015 Report Posted February 28, 2015 Sounds like a good thing to do for the week-end Wayne. Let Jen un-wind a bit. All our best, as always, for your entire family. I am still beyond over-whelmed by the courage and strength this young lady has. (That you ALL HAVE).
irishfield Posted March 13, 2015 Author Report Posted March 13, 2015 Ten days of Radiation all done. Then dropped by to collect Jen's locker items from work at Maple Leaf Gardens (Ryerson University - Mattami Athletic centre now) on the way back and then headed to her apartment. She has declared that she's not up for the truck ride home and wants to stay in her apartment until at least Tuesday when she sees her Oncologist again at Mt Sinai
Toronto_Angler Posted March 13, 2015 Report Posted March 13, 2015 Thanks for the update irishfield. I know we've never met but I've been following this thread for the years that it's been up. I feel like I know you and Jen from it. I've cried, I've been happy and all points in between. Always pulling for good news and hoping for the best to you,Jen and the family
Pigeontroller Posted March 13, 2015 Report Posted March 13, 2015 I think that goes for all of us! Hang in there! If you need ANYTHING, we're ALL here.
irishfield Posted March 18, 2015 Author Report Posted March 18, 2015 Well folks, to continue from where we had updated you a few weeks ago... Jennifer has finished up her 10 days of full head / brain radiation, with Dr. Sahgal at Sunnybrook, as of Thursday (Mar 12th). Leah has spent the past 2 weeks in Toronto with Jen taking her back and forth to Sunnybrook and sleeping on her love seat couch. I stayed home to give them a bit of room in Jen's little apartment and to get a few things done around here with Spring around the corner and bills needing to be paid. Jen seems to be doing okay after the latest ordeal. The "bump" (that was a large skull tumour) seems to have disappeared for the most part .... but none of us are dumb enough to know this is the final hurdle for her. Even if she is fortunate enough that this full head radiation was the magic to stop these "floaters" from finding a new spot to grow in her brain, she still has two spots in her left lung to monitor and deal with as time progresses. She (we) saw her Oncologist, Dr Razak at Mt Sinai, yesterday afternoon and as discussed the last time she saw him there aren't any chemotherapy cocktails "left in the cupboard" for Jennifer. Dr. Blackstein had "stretched every string" he could in her battle to this point. Dr Razak had previously mentioned Experimental Immune Therapy, but Jen has to be stable for a good period of time before she can even be allowed to start one of those trials. What was decided yesterday is that she needs 3 weeks (from last Thursday) to let the radiation continue to do it's thing and importantly for her to recover from the effects. She is to be back to see him on March 31st for another full body CT and a head / brain CT. These will be used to set bench marks while he then tries a drug called Pazopanib, which is a potent and selective multi-targeted receptor tyrosine kinase inhibitor that blocks tumour growth and inhibits new blood vessels from growing. This will be used to see if it can keep her stable long enough (or maybe even knock the spots out of her lungs). It's at least hoped that it will stop any new head or body tumours from developing, so that she can start the immune therapy trials in a few months. He advised us that the "Pazopanib is about $5000 / month and I'll have you on it for two months to start". When Leah and I got home last night I looked it up and from what I can find the average is $8800 US dollars a month for 120 pills ($11,000 Cdn). We are still waiting to find out if her current drug plan will cover her for this medicine, as OHIP certainly does not, and I guess we'll learn the real cost on March 31st if she gets to fill a prescription. Jennifer wanted to be left on her own in the city for the two weeks until her next appointment, so I cooked her a good supply of beef stroganoff last night while Leah and Jen went grocery shopping. Leah headed for home about 10 pm and myself about 10:30, somehow we arrived about 2 minute apart! Jen seemed content and happy to have her place back to herself. I'm sure that there will be a few "eyes" checking in on Jen over the next 2 weeks and we'll pick her up on the 31st for her Doctor's appointment. There may be a need for a ride to Sinai for her CT's prior to that, if they happen not to be on the 31st. From there we see how the new drug works and keep pushing forward.
paul_614 Posted March 19, 2015 Report Posted March 19, 2015 Wayne, if her insurance won't cover it, ask the hospital if they will. I am on a new treatment and the hospital said they would cover it IF my insurance or the drug manufacture would not.
irishfield Posted March 19, 2015 Author Report Posted March 19, 2015 We should know today if Sun Life is going to cover her. There are a few paths to try and get some reimbursement, but the only one for sure so far is a 20% "compassion" on price reduction from the mfg! Just sell the things for 20% less and cut the crap...
lew Posted March 19, 2015 Report Posted March 19, 2015 (edited) As I mentioned in an earlier post Wayne, Diane recently needed a 10 day supply of medication and it was $2100 but because she's over 65 it's covered buy the government. I know that won't help you guys but I sure hope you can come up with something. There's some insane prices on getting healthy and I often wonder what folks do who can't afford some of these things. Edited March 19, 2015 by lew
ketchenany Posted March 20, 2015 Report Posted March 20, 2015 We should know today if Sun Life is going to cover her. There are a few paths to try and get some reimbursement, but the only one for sure so far is a 20% "compassion" on price reduction from the mfg! Just sell the things for 20% less and cut the crap... Pharma companies are the wealthiest industries on this planet. Can they show some 'compassion' and just give it away on a trial basis. Their exposure on the results will more than cover the cost to produce. They have BILLIONS at their disposal. Wayne, all of the best to you and the family.
bigbuck Posted March 20, 2015 Report Posted March 20, 2015 Speak to both your MPP as well as Jen's MPP and try to get them on board to help you battle the bureaucracy. Ask her Dr what can be done. 5k a month can wipe out any savings you have real quick, esp if she needs to be on it longer term. Hopefully Sunlife will cover it, I guess that is her Extended Health provider for her Group coverage through work. You are going to need to squawk loudly now. The squeaky wheel gets the grease. Good luck and keep us posted.
NANUK Posted March 20, 2015 Report Posted March 20, 2015 Keeping all fingers & toes crossed, wishing for the best.
irishfield Posted March 20, 2015 Author Report Posted March 20, 2015 Best words I've heard all week.. COVERED 100 % ! Damn good thing as there isn't even much left for the moths to feed on in my wallet.
Joey Posted March 20, 2015 Report Posted March 20, 2015 Best words I've heard all week.. COVERED 100 % !
Whopper Posted March 21, 2015 Report Posted March 21, 2015 About time Wayne's crew caught a break. Thanks for sharing this entire experience with us Wayne
ecmilley Posted March 22, 2015 Report Posted March 22, 2015 We have your back brother. Been a long fight and she's winning on the score cards Take the long way home one night sure theres a couple shoulders that can relieve that weight for a night or two.
Gnote Posted March 25, 2015 Report Posted March 25, 2015 Thats good to hear wayne, i hope the good news keeps coming.
motv8tr Posted March 25, 2015 Report Posted March 25, 2015 Excellent news, really glad to hear that.!!! Maureen
Ralph Field Posted March 25, 2015 Report Posted March 25, 2015 Glad to here you got the coverage she needs.
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