Next (Next) Steps

What’s Next

We’ve had a week of meetings and follow-up’s with all the experts and now have the next (next) steps in the treatment plan. The short version is we will proceed with radiation therapy to both eyes. This consists of between 10-15 cycles with each cycle being radiation to each eye. In total, around 3-5 weeks of treatment at most depending on how aggressively they schedule the cycles. Of course, the actual schedule and timeline to be determined, hopefully next week.

Details

Now, the more detailed information for those that enjoy that.

From our reading and the experts opinions, either the chemo injections or the radiation are advisable as a next treatment. The goal is obviously to kill the remaining cancer in the eyes – full stop. From all the testing, it does appear no cancer exists anywhere else in the system they would expect to see it. The thinking being if there was any originally, between chemo and stem cell, they got it all. We’re only dealing with just the eyes at this point. This is both great news and simplifies the approach somewhat. Remember, we’re dealing in probability and likelihoods – not a lot of raw data or prior art to go on – and this form of this disease is very rare (more on that in a bit). The reason radiation was chosen is threefold:

One – Patient health

The chemo approach is quite debilitating and painful as we’ve mentioned. Welders flash (sunburn of the eye) type pain during high dosage cycle, light sensitivity, general discomfort, long process (many months). It’s not that this is a final deciding factor, but rather one they (and we) are keen to avoid if possible. We still retain the ability to do chemo injections as an ace-up-the-sleeve if needed. We won’t need this – we’re confident.

Two – Resistive cancer

Lymphoma especially, can form resistance to the chemo drugs it sees. The consensus being, if it didn’t kill the cells the first time with the very high dosages of chemo, there is a chance the cancer is now partially resistant to the drugs and less likely to be effective. Not to say that it’s totally ineffective, but as we’re dealing in probabilities, radiation is something cancer has never seen before. Further, radiation is kind of a scorched earth approach – making the switch from guns to bombs now – so we’re going to go hard. Dr Hooper in fact said “let them get the cancer, I’ll worry about the eyes” which is an amazing cross-discipline collaborative statement.

Three – Financial costs

While we enjoy “free healthcare” in Canada it’s not unlimited healthcare. And money doesn’t grow on trees (or hospital beds) despite the thoughts some have. These treatments must be funded from somewhere and the cost of the chemo drugs is very high. Complicating this, is the fact that we only need a very small amount of the drug per-cycle – the rest is literally thrown out. For this reason alone, it was not a hard decision to leave this as a next (next next) step if required. The probability of success is around the same for either approach, so being prudent with spending is acceptable to us.

Process

UPDATE – the choice has been made to use a different approach in an attempt to protect the cornea/lens. Please see this post for details.

Radiation will be done with what is called a Cyberknife (brand name). The more general term is a “gamma knife“. This device delivers hyper-accurate gamma radiation via a fully robotic arm. Think of it as a 4-axis CNC machine they might use in manufacturing, or a 3D printer with a laser. Juravinski has one of only 3 of these devices in Canada – lucky for us. You can read a bit more on the device itself and its introduction at Juravinski. This is great news for us, as protecting the optic nerve is imperative in this process and this is the device to do that. It has literally pinpoint accuracy and 3D mapping of each eye to ensure only what they want radiated gets radiation. For the geeks among us, this is like a super toy for saving lives, just check the picture to the right!

PVRL – Say what?

Along the way, there has been a lot of reading and sifting through medical papers. One thing that has become clear is that Cindy’s cancer is likely more rare than we thought. Originally it was diagnosed as Primary Central Nervous System Lymphoma (PCNSL) with Ocular Involvement. The central nervous system (CNS) involvement was never really validated through MRI’s or spinal taps. However, a newer paper out actually identifies Primary VitreoRetinal Lymphoma (PVRL) as more likely diagnosis. PVRL is a subset of PCNSL, where the lymphocytic neoplastic cells primarily affect the retina with or without involving the vitreous or the optic nerve and may not have brain or cerebrospinal fluid (CSF) involvement at presentation. It’s a bit of hairsplitting to understand the acute differences, but suffice to say they are categorizing this differently and that’s important for both future diagnosis and treatment.

The most important takeaway from the various studies continue to be that these are highly lethal and aggressive cancers. Left unchecked they result in a very poor prognosis and early detection is critical to positive long term outcomes. We feel extremely happy to have had the entire team supporting us as they nailed this thing early. Dr Hooper played against the averages in his biopsy and pathology process – there is a massive 70% false-negative outcome in this process and he nailed it the first time. He also had the expertise and experience to identify this very rare cancer which we’re also thankful for.

Thanks

That’s the update for now. More process and more work to be done. We have direction and confidence and the right tools at our disposal. Time to load up again, kick some cancer ass, and get the hell finished with this shitty disease. Thanks for following along and thank you as always for your ongoing support.