January 27, 2017

This has certainly become a journey of ups and down and the new year hasn't started off as we had hoped.  Brian went for chemo on Tuesday, only for it to be cancelled for a second week in a row.  His white count ANC (neutrophils) were only at 0.4, way too low to administer the chemo.   His back pain has been unrelenting and he has been trying to take his morphine on a more regular basis to try to keep it to a minimum.  Of course, the nights are worse, he just cannot get a good night's sleep, waking from sleep every 2-3 hours, only to need more pain medication.  The daytime pain is more tolerable, but Brian is sleeping a lot throughout the day as he feels so exhausted.   Friday was a big clinic day as Brian was scheduled for a CT in the morning, blood work after that and then we saw Dr. McCarron in the afternoon when all the "rushed" results would be back.  It was a long uncomfortable day for Brian having to be at the hospital for 5-6 hours, sitting is definitely not the best for his back.    So, the CT scan ended up showing severe degenerative disc disease in his lower back with compression of the lumbar vertebra 3 on the vertebra below.  There is some mild disc bulging and spurs, and narrowing of the spinal cord - spinal stenosis.  She says most of this is not cancer related, although the compression of L3 could be caused by the cancer, due to the weakening of the bones.  For the most part though, the degenerative disc disease is not caused by the cancer.  She recommended a referral to an orthopedic back surgeon who can assess him and may be able to operate where they put cement between the vertebra so they do not collapse on one another.  She said the name of this procedure, but I can't remember what it was now.  Once again, just too much information overload! She also gave Brian a more potent narcotic, Dilaudid (hydromorphine) to hopefully help a bit more with the pain, especially through the night.  He has taken it over the weekend and although Brian feels it does work better than the morphine, it still does not allow him to sleep through the night.   Dr. McCarron also recommended a referral to the pain clinic to help him manage the pain.  Breanne has some friends who recommended that we see a friend of theirs who is an anesthetist and specializes in pain and has a clinic in the Toronto area.  He told them that he would be willing to see Brian urgently, we just need to get our doctor to make the referral.  So we are going to pursue that option for sure.  

With respect to the blood work on Friday, his white count (ANC) was still very low and she said his marrow is having a hard time recovering from the chemotherapy; so she told me to give Brian an injection of Neupogen over the weekend, and on Tuesday we still go for chemo, but she is going to only give him the velcade and the dexamethasone, and eliminate the cyclophosophamide for the next two cycles.  She is going to see how that works with regard to his white count and then we are to see her again in two weeks for further decision-making before the next round starts.  These two weeks are to try to finish off the round we are on right now, but have had to miss two weeks due to his white count.  

We asked her about the reasoning for continuing chemotherapy and she said that the government sets out the guidelines for any particular chemo which is based on studies and what is best for the patient. She says the 8 to 9 rounds of CyBorD gives the longest remission after.  The longer it is given, the longer the remission rate is after it is finished. So if you stop mid-way, the remission is probably 4 months and if you go the full therapy, it gives you 6 months after stopping before recurrence.   Also, if you stop before the full course, it restricts the chemo that can be used for recurrence.  This is how we understood what she meant anyway. As I say, so much information, it does become overwhelming at times and we sometimes wonder if our interpretation of what we are told is correct! 

So that is where we stand for now.  Brian is not able to do much with this back pain, he can't even go for our daily walks with Timmie.  He is able to get about though and tries to be as active as he can without overdoing it, he does some light stretching to try to keep his muscles pliable.  In all, it is dragging him down, I can see it, although he does an amazing job of keeping positive and going one step at a time.  He ends up watching a lot of TV to try to pass the time and of course with all that is going on south of the border, that news is just depressing; we are just so tired of it all.  

We will forge ahead and hopefully soon we can get Brian's pain management under control! I think I heard the other day that it is only 7 Mondays until Spring!!