Nipfisher Posted March 26, 2015 Report Posted March 26, 2015 Wayne, I just caught up on the last 4-6 pages and WOW!. I am so happy the new drug treatment will be covered. I hope Jen gets some well needed rest to recover.
irishfield Posted April 1, 2015 Author Report Posted April 1, 2015 Well, that was a LONG day after picking Jen up from her apartment just after noon today (we left home at 10:20). Oncology was a cluster.. today at Mt Sinai, with unscheduled patients and emergency consults bumping us by almost 5 hours. But hey, we've done the same to others and just have to take it in stride... unlike the impatient Doctor that couldn't comprehend having to wait "an hour" to see his Oncologist. I almost took him out... to save him the wait. Never seen someone make such a scene in the 5 years we've been going there. Jen had her head and full body CT's on Monday (30th)... saw the Doc today.. well yesterday by now. Lung spots have grown a millimeter or two in the past 6/7 weeks, but the radiation seems to have done it's job at this point for her skull / brain. Nothing new showing and what was being fully radiated seems to have subsided a bit, so it at least worked on what was there before the latest radiation. I know it's done something, as Jen is back to her bubbly self again. Very few headaches, although still easily tired which of course is a side effect of radiation. Got her script for the new Pazopanib, with just 2 minutes to spare before the pharmacy closed. Much to our surprise it was ONLY $4891.07 CDN for a months worth of pills. Cheapest I could find, as noted in the last update was over $8800 US$'s for the American folks here. So she came home with us, to see how she reacts to this drug. Just wasn't a good idea to leave her "home alone". She has an appointment again in 4 weeks to consult what her side effects have been and if a few key things do go to hell before that we screw up their scheduling like others did to us today. Just how it works, but hopefully she can stick to 4 weeks and this stuff keeps anything new at bay. The goal is to keep her stable for a time period so we can get her into an immune therapy trial.
Big Cliff Posted April 1, 2015 Report Posted April 1, 2015 Good on you for keeping your cool, you just have to shake your head sometimes at some of the antics that go on in these waiting rooms. Glad to hear there is some progress in Jen's condition and we'll continue with the good thoughts and prayers! Cliff & Sue
bigbuck Posted April 1, 2015 Report Posted April 1, 2015 The joys of hurrying up to wait. A Dr getting upset because he had to wait......what a morooon! I am quite sure he never ever made one of his patients ever have to wait. Thankfully the radiation has helped and hopefully the new meds will get things under wraps. Good luck Jen!!!!! There are A LOT of people who have never met you that are praying for you.
bpsbassman Posted April 22, 2015 Report Posted April 22, 2015 Just catching up with this thread Wayne. Been wondering how things were going. Sounds like pretty good news. Prayers continue.
irishfield Posted April 22, 2015 Author Report Posted April 22, 2015 Thanks Roger! Been a long three weeks.. her days consist of 14 hours in bed and 10 on the couch.. repeat. Even skipped going to card making at the cancer centre this afternoon, which really tells us things are the greatest as she's never missed a Wednesday afternoon of card making. MRI on her head / brain at Sunnybrook on Friday and sees her Oncologist next Tuesday to discuss the drug she's on. Then see's her radiation Oncologist (for her head) 2 weeks from today to go over the MRI and learn that hopefully everything is remaining stable up stairs.
irishfield Posted May 1, 2015 Author Report Posted May 1, 2015 Well Jennifer has been on this Pazopanib $$$$ pill for a month now. It started out okay, but after 2 weeks she began to have severe body pains just about everywhere. Constant pains that seem to move about her body and she's never far from the heating pad. Into week 3 her appetite disappeared, while still hungry she just doesn't have the energy to eat and things stick in her throat. When she does finally think that she can eat, she then feels nauseous and can’t. The routine has become 14 hours in bed and then 10 on the couch.. repeat with Leah waiting on her hand and foot trying anything and everything to get her to nibble and drink. Generally we all get to bed about 3am each night... so don't anyone call here before noon. Last Friday Jen and Leah headed for Sunnybrook for a scheduled head MRI. Afterwards, Jennifer just wasn't capable to make the drive back home so they stayed in Jen's apartment right through to Tuesday for her appointment with her Medical Oncologist at Mt. Sinai. Again a scheduled appointment to discuss the pill she is on and hopefully to get some answers as to how she is expected to function on it, as week 4 got even worse for pain, tiredness and almost no food intake / day. The hope was that maybe the dose would be reduced, due to her small size and the fact that everyone seems to get prescribed the same 4 pill dose / day from what we've read. Sunday morning rolls around and the Radiation Oncologist from Sunnybrook calls Jennifer on her cell phone. She is not scheduled to see him until May 6th so him calling (himself, not an assistant) on a Sunday morning right after Fridays MRI raises the red flag pretty quickly. He tells her he needs to see her CT disc from before Radiation, as he can't get it up on his computer, and that he might need to give her another "bump" (more radiation) and that he must see her on Tuesday before she goes to her Medical Oncologist. Of course this phone call brings nothing but shivers down our spines as to what the sudden urgency is. So Tuesday at Sunnybrook he just wanted to see the disc from before Radiation... and maybe should have said that instead of scaring the crap out of everyone by calling her on a Sunday morning and telling her to come see him Tuesday before going to Mt Sinai to see Dr. Razak. He is happy with what he sees after the full head radiation... although there is some residual tumour left behind. He hopes that the Pazopanib she's on will take care of it. Read, even though she probably needs it, he can’t give her a radiation “bump” without her coming off of the Pazopanib and that’s not an option! Just an hour and a half later she's sees Dr Razak at Mt Sinai. He is happy with her blood work, blood pressure, thyroid and kidney functions are still good (amazing enough) and he wants her to stay on the Pazopanib, at the current strength, and will see her in 4 to 6 weeks for new lung (still monitoring those two spots in her lung) and new head CTs. He apologises to her for what the drug is putting her though, but there is not much he can do and she needs to stay the course. Allowed Codeine for the pain as needed or her Hydromorphone. Neither are sufficient to take care of what Jen describes as someone trying to jam a broom stick through her, or a knife in her back. After her Tuesday afternoon visit with Dr Razak they headed back to her apartment to pack and come home. Jen immediately went to sleep instead. Around 9 she woke up, Leah and her packed and hit the road at about 10:30pm.. arriving home at 1am after a Tim Horton's stop for soup. It’s now 2 days later.. not much has changed, other than the pain is in a new spot today on her left hip. Hopefully this rotating pain runs out of places to appear and she gets back to some comfort in the days to come. It’s going to be a long 6 weeks before the next Dr. visit at this rate and hopefully her scans, when that day rolls around, will at least bring continuing good news and not more bad. Still not sure when and if she’ll transition from this Pazopanib to an experimental trial, but we’ll cross that bridge when it’s built. Wayne and Leah
Gnote Posted May 1, 2015 Report Posted May 1, 2015 My heart goes out to all of you, i hope she feels a little better soon.
Steve Posted May 1, 2015 Report Posted May 1, 2015 I'm so sorry Jen that you have to go through this pain. Wayne, Leah, you two have been through more than any parent should ever have to deal with. I don't pray, but Wayne, for you and your family, I will.
Old Ironmaker Posted May 1, 2015 Report Posted May 1, 2015 Back when I was younger we used to talk about this guy or that guy as being a tough guy because they could street fight. There are 2 types of real tough guys, the one that gets up at 04:30 and goes into a job they absolutely despises for 30 years but does it and doesn't complain because he or she has a family to support. The second kind of tough guy is your daughter Jen, bar none. Prayers sent via Godmail.
Big Cliff Posted May 1, 2015 Report Posted May 1, 2015 The say that god never gives us more to handle than what we can deal with but sometimes I wonder. Good thoughts and prayers for all of you!
bigbuck Posted May 1, 2015 Report Posted May 1, 2015 Wow. I hope she can grind through this Wayne. These bloody drugs wreak havoc. Hoping and praying for her recovery.
ketchenany Posted May 1, 2015 Report Posted May 1, 2015 Wayne, our thoughts are with you and your family.
okumasheffield Posted May 2, 2015 Report Posted May 2, 2015 I am sure Jen can tough it out as the good news keep coming!
irishfield Posted June 7, 2015 Author Report Posted June 7, 2015 A monumental day here, but you might have to be living it to fully understand the significance. Jennifer actually got off the couch and came to the dinner table for steak and potatoes tonight. A first in about 8 weeks! Didn't eat a lot, but a huge step from where she's been the past 2 months, with the first real meals in that entire time frame happening in the past week only. Prior she was probably consuming less than 100 calories a day on this nasty $$$$ drug. Has it in her mind she's doing the cancer walk in Toronto next weekend as well... or at least the victory lap.
Gnote Posted June 7, 2015 Report Posted June 7, 2015 Good to hear wayne! Hope she keeps gettin stronger!
bpsbassman Posted June 7, 2015 Report Posted June 7, 2015 Great news Wayne!! I needed to hear that. Give her a hug for me.
limeyangler Posted June 7, 2015 Report Posted June 7, 2015 (edited) YUM to steak and potatoes BUM to pain Good news wayne. Edited June 7, 2015 by limeyangler
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now