Rescue Protocol + a Back Brace

Hi everyone,

Last you heard we found out the tumours had grown and we learned we are now in the next ‘phase’ or ‘category’ {my words} of treatment: regrowth.  Oncology presented us with three options to consider; the first was surgery, the second was our same chemo on a new schedule, and the last was a clinical trial with a different chemo.

We decided we wanted to see if surgery was a viable option so we consulted with a new neurosurgeon {our original surgeon, unfortunately, has left the Foothills} and while he told us surgery could be an option, he didn’t think it was the best option. Due to all the additional issues we have encountered {blood thinner meds due to the blood clot, the liver issues, the diabetes, etc.} surgery would be a higher risk.  And, while two of the tumours are close to the skull, the middle one is imbedded and would be inoperable anyway.  So,… next…

We returned to oncology to let them know surgery wasn’t the best option for us and we wanted to hear their recommendations but we also needed to let them know that Andy was experiencing excruciating pain in his lower back.  {Andy has had discomfort since last October but the pain increased significantly on January 7th.}  Oncology was concerned because we couldn’t receive any chemo or treatment with him in that kind of pain.  We were at a very serious impasse so, not knowing what else to do, we insisted on an x-ray before we left the clinic and went home to wait for the results.

We received a call late the next day and we were shocked to find out that Andy has two compression fractures in his spine {vertebra L1 + L2 for those interested}.  We spent the next week going to appointments to have that straightened out {no pun intended}.  We had to be casted for a back brace, then back in for a fitting, we had to go to Andy’s GP for a pain management prescription, and we also had a consult with another neurosurgeon that specializes in the spine.  All this traipsing around with Andy in a serious amount of pain.  {Have I mentioned how a.m.a.z.i.n.g Andy is?  He bears it all through gritted teeth and no complaints.  My husband is my hero.}

Now that we had Andy’s back pain under control we returned to oncology to discuss our next step.  Due to some symptom flare-up {more difficulty speaking, etc.}, the advice of the surgeon, the time ‘wasted’ having Andy’s back fixed up, and most obviously, the fact that the tumours were growing we were determined to start treatment as soon as possible. That ruled out the clinical trial {for now} because we didn’t even know if we would qualify, so, that left us with door number 2 – a new chemo regiment.

It’s called the ‘Rescue Protocol’.  The chemo is the same, but we take a smaller dose every day.  The bad thing is that this is the same chemo that damaged Andy’s liver, but the good is that Andy has tolerated it well enough.  Due to all of the crap we’ve gone through so far Oncology will be keeping a close eye on us and we’ll be at the clinic weekly.

We started the chemo last Wednesday {January 19th} and Andy has handled that quite alright. He experienced some minor nausea and he’s been kinda sleepy but otherwise the chemo has been okay.  However, some of his symptoms have been decreasing steadily this last week, his speech and the ability to communicate {scary}, his mobility and dexterity on his right side is slipping.  This makes it difficult to hold utensils, use the remote {gasp!} and he’s developed a bit of a limp.  So… we called oncology and we have to increase his steroid again {we doubled it} because it is likely there is a lot of swelling going on due to continuous tumour growth {let’s hope not} or the chemo can cause inflammation as well.

That is about it for today {that is enough I think} and I have to head to the office this afternoon.

Love you all,

Lisa+Andy