Nivolumab and music to my ears

Well, it’s finally coursing through my veins. Welcome Nivolumab. I’m not sure what to expect but we are hoping for the best. I’m supposed to receive a treatment every 2 weeks for the foreseeable future with the hopes that these tumours will start reversing their course of action. Lets all hope that happens sooner than later.

I have to admit, I’ve been feeling pretty decent the last couple of weeks. Since Radiation therapy. Apparently I’m a “responder” and radiation seems to work for me – albeit temporarily. So far, I can walk a little better and am getting some better sleeps thanks to some holistic medication.

I would just like to be in good enough shape to enjoy the holidays with my family. That’s my goal.

Otherwise, there isn’t much to report really. I would love to say a lot more but I’m kind of in a good place where I have some balanced sleeps, pain relief and feeling OK overall.

Since my hearing loss suffered as a result of the Cisplatin, I’ve been on the search for a good portable music player. For everyone who said “iPhone!” shame on you. They sound horrible. To be honest, they are good for most applications but for music, not so much. I’ll listen to Audiobooks and Podcasts on my iPhone but not so much music unless I’m streaming it in the truck.

I ended up buying a dedicated music player with a built-in headphone amp, DAC (Digital to Analog Converter), and 10 Band EQ. It uses micro SD cards for storage which cuts down on the cost. You would think that these are expensive but they are about ½ the price of an iPod and can be loaded with unlimited music. It decodes all recorded music formats including all lossless formats. All you need is a decent set of headphones and you are off to the races. So I sold a few guitar pedals, went to my favourite boutique music store (The Headphone Bar) and bought a FiiO X3 music player and a pair of Sennheiser Momentum II headphones. Not cheap overall but what a great sounding little system. With the 10 Band EQ I can adjust the player to cover off the frequencies I now have difficulty hearing. So far so good. Now it’s just a matter of loading a bunch of Micro SD cards with my favourite tunes.

Wendy had had me working the last few days. I think she mentioned it in her post. We’ve had to re-arrange the office to accommodate a hospital bed – just in case. I may try it out tonight. I’ve been sleeping in Rob’s chair in the family room for the past week or so. It’s so comfortable and I’m getting some great sleeps. I’m hoping I can transfer that to the hospital bed because the last thing I want to do is wear out my father-in-law’s chair. He was nice enough to lend it to me, I don’t want to wreck it.

Well I think it’s time for me to kick back and have another nap. That or make dinner. I can’t decide now. Lol.

Volleyball and Nivolumab

I have been lax in keeping everyone informed with what is going on.  Hopefully everyone understands that our every moment is consumed with finding a cure for Ben and trying to keep some semblance of a normal life for our kids.  I feel I am miserably failing at that second one.

Ben was able to complete the radiation for pain in the area where the cancer moved into the muscle. Once the first five sessions were done the pain (in that area) settled down and it has been better since then.

Ben was released from hospital on Tuesday and we were particularly excited because he was almost pain free.  Everywhere. Seriously.  It was a truly glorious moment and we were literally able to almost forget that this disease has invaded our lives. Almost.

By the time we got home, the pain was starting to creep it’s way back into our lives.  Right down Bens leg and back into his foot.  The only upside is that it skips the area that was radiated, but the damn pain is still there.  And it’s bad.  So much so that Ben was not able to make it to Rae’s volleyball game that evening.  The first in a series of games in the Fraser Valleys which lead to the Provincials.

If he had been able to come, he would have been greeted by this:

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                                                                             Jr girls volleyball

See how they have headbands on?  Well, if you look a little closer you see this:

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                                                                                    Win For Ben

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                                                                                 Strength – Hope

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                                                                           Fight for Ben

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And on, and on.  Rae’s said “Pray For Ben.”  It was one of the most moving things I have seen.  I was so touched.  Raegan was so touched.  And Ben, well I’m pretty sure that this simple act by a bunch of teenaged girls made his whole week.  Seeing the support that Raegan is receiving brings so much relief to us.  It was a really nice moment.

Oh – and they won!

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On Thursday we met with Dr K.  I wasn’t much in the mood for pictures that day.  Barb met us there and we discussed Nivolumab again, as the coverage still had not come through at that time.  In fact, right before we went into that appointment, the RCMP physician sent Dr K another email to ask him if he had applied for coverage through the Compassionate Program of the BCCA, and if not, why not.

Dr K maintained his sense of humour, even at that early hour, and replied, “because it will be turned down which is as certain as an “Amen” in the church.”  Haha. The RCMP Doctor replied that she would pass that on to NHQ. 😄

In any case, we were no further ahead by the time we met with Dr K, so I told him we wanted to pay cash for the drug so that Ben could get started, and could he hurry that along for us?  Turns out that Dr K knew who to go to in order to find the drug, but he is not allowed to administer an off label drug at the BCCA.  Politics.  So Ben has to move on to a different oncologist who works outside of the cancer agency.  I’m a bit disappointed, but so be it.  Whatever it takes to get the drug. We left the appt with Dr K advising he would see if a Burnaby oncologist would take Ben on and give him the drug.

Later in the afternoon while I was running my groceries through the till at Save On, my phone rang and I was greeted by the RCMP Doctor.  She was phoning me to tell me that coverage for the drug had been approved for four months!

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I went home to tell Ben in person.  We had a moment, let me tell you. There is nothing like finding out you get another chance at life that brings out the feelies. 

So the referral has been made and our fingers are crossed that Ben will get a call to start it this week.  The Burnaby oncologist has agreed to take him as a patient – we just need to know when he can start.  The drug will be administered like chemo. I pray this is the answer.

In addition to this good news, my ever persistent sister found some really good info about another possible option involving gut health that could be helpful for Ben.  She emailed a doctor in the States, and lo and behold she received an answer today with some great information.  I can’t imagine how we would possibly walk this path without Barb.  So grateful.  You are the best, Barb.

That evening Ben was able to make it to Rae’s next two volleyball games, and guess what?  The girls all wore their inspiring gear for Ben again!  Another sweet moment.  So glad he got to see it.

Also, Ben and Zak made it to another concert on Friday night, and I’m told they had a great time (even though Ben has been paying for it in pain ever since!). Friday was a very rough night for Ben, and it hasn’t gotten a whole lot better since.

Lisa came over again this weekend, thank Heavens.  She talked me off my roof top more then once.  Thank God for her.  Also, we were able to do this:

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                                                                             Connie, Kirby, Ben

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                                                                                  Ben and Lisa

We do love our Thai food!

When we got home that night, I was greeted by the best Facebook post ever.  The lovely Christine and Cherri recently trotted off to Maui for some sun and a 10k race.  Check this out:

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 The front of their shirts says “Saint-Onge Strong”.  The back says “Will run for Nivolumab”. Check out these pics:

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Note the heart with our initials, the guitar, the stetson, the kids initials and the word “Titan” on the wrist above.

After I saw these, I felt like this:

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 Way to go, Christine and Cherri!  And thank you!  You said you would run for Nivolumab, and we got it!

To everyone who, over the last eight months has spent time praying for the answer to cure Ben’s illness, or sending positive vibes, or looking up info in the news or on the science websites …. We thank you.  We owe a big debt of gratitude that we could never repay.  

Kirby – for all you tried to do for us this week also, I hope you know how much that means to us.  It was our lucky day when we moved to 63B.

In a week that has been filled with the horror of terrorism all over the world, I continue to be moved by how good most people are.

Thank you.

Hug your families

Wendy xo

What to write?

What to write???

I have to try to catch up with my prolific wife. She seems to have a lot to say and the time to write it down. That’s not a fair statement, I have a lot to say and more time than her to write it down, I just forget to do it or see something shiny and get distracted. Duh.

A lot has happened over the last little while. So much so that I could not possibly put it in chronological order for a nice read. So I will point out some highlights!

Well, I underwent another bout of radiation treatment to help with the pain in my leg. Thankfully it did in fact address that particular pain but now there seems to be more pain in different locations. All the same leg, just top and bottom now. I shouldn’t say “more pain” because I don’t think there is more. It’s just the link between the two pains has been severed and now instead of my whole leg being sore with an emphasis on one spot, the middle is taken care of thanks to the radiation but the top and bottom still hurt. It’s hard to describe. I won’t lie though, I’ve been having difficulties dealing with the remaining pain. It hurts. Quite a bit. It keeps me up at night and consequently keeps my lovely spouse up as well as I lament and ask for her help in wrapping myself up in heating blankets or take a bath or search for breakthrough meds. I don’t know what I would do without her.

How about a happy highlight! One of the recent highlights for me is that I finally got to see Matthew Good in concert. He’s been an elusive artist and I thought he had hung up his touring gloves but in the end, he still performs live. I ended up going to the show with Zach. Wendy was my official date but she just wasn’t up to it for her own reasons. She has been working really hard on my behalf while I sit on the sidelines just taking my meds as expected and watching the show of life go on without me. So it’s totally understandable.

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Matthew Good was great. He played many of my favourite oldies from his time with the Matthew Good Band as well as some of his newer stuff in support of his most recent solo release “Chaotic Neutral”. I had a really good time. Zach didn’t recognize any of the music – it was before his time – but like his dad, seems to enjoy live performances no matter who is playing. Plus it was nice to spend some time with him.

Chaotic Neutral

Back to some sad stuff. The event did manage to solidify something that I had been struggling with over the past few weeks. Every year, my RCMP Troop has a get-together around the holidays. Just an informal get-together where drinks and laughs can be had. Over the years, I had passed on the opportunities for a number of reasons, mostly money since the reunions normally happen in Quebec or Ontario. I almost went the last two or three years but again passed, thinking “I’ll do it next year for sure”. Well next year is here and now it’s not about money, it’s my body that says NO! There is no way I could make it unassisted through an airport, trying to get to a connecting flight or reach a taxi stand for that matter. I just couldn’t do it. The pain is just too much. I was going to go to the reunion in Montreal and then visit my good friend Chris in Ottawa who finds himself in the same predicament I am in. He was recently diagnosed with cancer and is currently undergoing treatment. I don’t have the words to describe how heartbroken I am over my inability to go and support Chris. I so wanted to have dinner with my Troop mates and then visit Chris in person. But, I’ve realized that it can’t happen. My body just won’t make it. And that’s saying a lot because I’m pretty stubborn. If there was anyway for me to tough it out, I would. But there isn’t. My body failing me just makes me want to cry. Now, I hope there is a “next year” to do it in. I hope so.

Let that be a lesson to everyone, don’t put off what you can do right now because you never know… You may not be able to do it later.

POG Results and Friends

Once again, there is always some good with the not-so-good.  Radiation has been tough on Ben but it seems like he may have made it over the hump where the pain may just be starting to ease off and the radiation having some positive effect.  He continues to be treated right through this week and into next week.  Ten treatments in total.  On a few of the days, our dear friend Whitney was working in Radiation so she administered Ben’s pain medication and helped him through.  Thank you, Whitney.

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On another positive note, this guy came to town to spend a few days with Ben:

 

That is Jeff.  (Yes, he is hidden behind the emoticons so that his face isn’t out there for all to see.  I chose the most suitable emoticons.  lol)  All the way down from the Great White North.  I was feeling generous and gave him some leftover juice.  He was super excited. Hahaha

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Although I know he loved the juice (haha), I think he was a bit happier that we were able to hit up the Noodle Box while he was here.  He says that was the real reason he came to town, but I don’t believe him….

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Yesterday we met with Dr K.  As usual we brought along an entourage …

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Without beating around the bush,  the bottom line is that the POG trial unfortunately did not yield any useful results for Ben. That is obviously extremely disappointing and we had a good cry over that, but it is important not to lose hope and it is time to re focus.  We are now in the process of trying to get Ben into a trial in Toronto or get him access to a drug here called Nivolumab.   Nivolumab is a newish drug and it is a PD-1 inhibitor.  A recent study showed that 100% of collecting duct tumours express PD-1 and according to the oncologist, the drug is associated with an excellent chance of response.

The issue with Nivolumab is that it is currently only covered for malignant melanoma, and it is not yet covered for Collecting Duct Carcinoma. Apparently it costs somewhere in the area of $200K / year.  US Dollars.  Ouch.  Having said that, the first step will be to just get ahold of it and try it for a couple of months to see if it does anything, and then worry about the rest later. The emails have been flying this morning and many attempts are being made to get this drug covered for Ben.

The upside of being enrolled in the Toronto trial as opposed to taking the Nivolumab would be that the drugs in that trial would be covered, although we would have incur the costs of flights / accommodation etc.  I don’t know what that will look like yet so I won’t speculate.

We will take whichever option comes first.  I don’t have enough information about the drugs being used in the Toronto trial, so I can’t really speak to why they would be good.  (I was told, but I can’t remember).  I do know that it was clear that we need to just take whatever comes first.

And so we wait….

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Hug your families.  xo

HER2 and Radiation

Ben started his radiation treatment yesterday which will hopefully (eventually) reduce some pain.  In the beginning I believe it can annoy the tumour a bit which causes it to hurt more, but then hopefully it will settle down.  The radiation also adds to Ben’s exhaustion and so, if possible, he is even more tired now then before.  And so our routine of sleep, radiation, sleep etc etc begins and will continue for another 8 sessions excluding weekends.

Yesterday I spoke with Dr K and received the unfortunate news that Ben does not express HER2.  That was very disheartening to hear. I was really hopeful that we would hear something positive.  Dr. K will be reviewing some of the clinical trials that Barb has found and emailed to him, and he will let us know by next week if there is anything that Ben can participate in.  Fingers crossed.  That will mean all sorts of challenges depending on location of the trial, with regards to the kids etc.  I have no idea at this point if it means flying elsewhere and staying for several weeks or longer, or if it means flying back and forth – I’m not even going to speculate right now.  There is no point in guessing until we even know if any of them are suitable for Ben.

That is all I have.  The bottom line is that Ben is receiving treatment just for pain at this point.  So all prayers are welcome.

xo

PET Scans, Oncos and Canceros Rancheros

So Tuesday was my PET Scan and Wednesday was my appointment with the oncologist. The PET Scan went relatively well, the oncologists appointment did not. I shouldn’t say it didn’t go well, Dr K is a very pleasant doctor but the news he delivered wasn’t great. It turns out that the cancer (aka: Canceros Rancheros if it was a Mexican dish) has spread a wee bit more towards the nerves that affect the front of my leg. Which means that all of the pain I’ve been suffering from recently was not in fact muscular pain it was nerve pain related to my Mexican dish.

So, where do we go from here? Well Dr K will consult with Dr P and look into some further radiation treatment. Hopefully they can treat that particular area and relieve some of the pain.

The next plan of attack was to take another chemo drug that sounds like Sinutab but is not Sinutab. Wouldn’t that be cool? Sinutab for cancer. They’d make billions. Anyways, I turned down that great opportunity in favor of waiting for the POG results. I am hoping, fingers crossed, that the genetic sequencing done by the POG Trial comes up with some form of treatment. Because to be quite honest, it looks like we’re coming to the end of potential treatments.

My wonderful wife has been juicing the shit out of our local organic vegetables and making me drink her concoctions on a daily basis. I have to admit that while her first juices tasted like science experiments gone bad, her most recent recipes are quite tasty. Keep it up Wendy. At the very least it’s giving me a lot more energy!

Well that’s my update du jour. I wish I could write more but my leg is bothering me and well, to be quite honest, I’m feeling a little down right now.

Until next time.

The plan, it is a hatching…

I am writing this at just about midnight, having just returned home.  Ben was admitted to Surrey Memorial Hospital today due to an obvious deterioration in his condition.  He is finding it difficult to walk (as he mentioned in his previous post) and tends to look like he’s just polished off a 40 of rum when he’s walking.  (Haha.  He’s going to love it when he reads this one!).  So we made it into one of the rooms in Emerg, and Ben just crashed from the pain and the exhaustion:

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But then lovely Nurse Tracy arrived, and she told us all about how she could take the pain away.  Dear, dear Nurse Tracy.  Getting prepped for those pain meds made Ben pretty happy:

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Well, NOW he’s feeling pretty good, so why not get up and make a pit stop so that the whole of Emerg gets a vision of this little number in a short dress….

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There’s my man!  Amazing what some good drugs and cute nurse do for getting a man smiling again.  lol.

So once he got settled in, various people came to check him out.  Three different doctors and a few nurses, and one person who took a lot of blood.  One of the doctors decided to get to know Ben rather intimately and cracked jokes the entire time while doing so.  If I hadn’t been laughing so hard I would have taken a super cute blackmail photo for the blog.

In any case, when all was said and done, we now seem to have a tentative plan.  I believe (but don’t hold me to it) that an attempt will be made tomorrow to get a CT guided biopsy of the metastasized  site.  That will be followed by radiation to zap that bastard tumour out of Ben’s butt.  (haha…he’s also going to love to read that.  He says that other people get ‘cool’ cancers and he gets stuck with ‘ass cancer’).

Dr M (spinal surgeon who is not able to operate) spoke with Dr F in Vancouver (who is the one guy that may be able to operate, if that turns out to be the best option.  I doubt if surgery at that site is the best option, but we’ll see).  In any case, Dr F thinks that the tumour may require a ‘special’ radiation treatment that can only be done in Vancouver.  How fitting that my Unique Ben needs a Unique radiation treatment that requires ongoing commuting to Vancouver.  He just can’t do anything the simple way, my guy.  No normal radiation for him.

Dr F is trying to expedite the biopsy which may be done at the BC Cancer Agency in Vancouver.  We will find out tomorrow.  It is possible that they will radiate the crap out of that tumour, and then leave it to see what happens (and remove the kidney, of course).  I believe that chemo is a requirement after the kidney has been removed, due to the expectation that some rogue cells may escape during the surgery.  That kind of sucks, but so be it.

So that is pretty much the plan in a nutshell, which I realize is vague at best but a plan nonetheless.  So then we focussed on a little fun like this:

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Yes, that is Beth who flew in from Alberta today to spread the love.  (Look at Ben just revelling in that hug!)

And then there was this:

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As you can see, Ben has perked up a bit after the hug from Beth so he was warmed up for his picture with Zach.  The only one I missed was a picture of Ben and Ryan, who is also over for work and managed to stop in to say hello to Ben.  I was kicking myself afterwards for not getting a picture.  Ryan…if you’re reading this, head back to the hospital so I can get one!

Anyway, thats all we have for now.  He may be moved into Vancouver tomorrow.  We aren’t sure at this point but will let everyone know as soon as we know.

The plan, it is a hatching