March 1, 2017 - Chemo is done!

Brian has had quite a struggle with severe side effects from chemo since my last posting. I had spoken about the referrals we had to see a pain specialist and an orthopedic surgeon for Brian's back issues.  The pain specialist was quite helpful in explaining to us the problem with Brian's back and how important it was to manage the pain, although he said he would not be able to do any epidural injections as Brian's vertebra had no space in order to do so. He was in agreement with the pain medication that Dr. McCarron had put him on, but said that Brian needed to be taking it on a more regular schedule in that even though he was on long-acting hydromorph contin (which is suppose to last 12 hours), he needed to be taking a pill every 8 hours to keep the pain under control.  Brian was taking the long-acting every 12 hours and then taking a short-acting Dilaudid for break-through pain. So after Dr. Cramb explained how he should be taking the medication, that has made quite a difference in that Brian's back is definitely better, it is just more of an ache right now.  The other pressing problem is that Brian has now developed numbness, tingling and weakness in his legs which we thought was part of the pain in the back, possibly the sciatic nerve.  The weird thing about that was that it was both legs, which is unusual for sciatic nerve issues.  The following week, we saw the orthopedic surgeon and he was very thorough, he even brought up Brian's CT scan on the monitor to show us Brian's degenerative disc disease.  He also pointed out that as far as he could see, the openings where the nerves go through didn't really portray to him that there was a sciatic nerve problem.  He felt that Brian's numbness, tingling in the legs was peripheral neuropathy, which is a side effect of the Velcade chemotherapy.   He also felt that Brian's back pain was more chemo-related than anything else.  He wanted Brian to have an MRI and EMG studies of his legs to check his nerves and then make further assessments.  He didn't feel that he could do anything for Brian surgically as he felt all of this was related to the chemo.    

Then on August 14 (Valentine's Day), Brian had another round of chemo although only the Velcade and dexamethasone, Dr. McCarron had already stopped the cyclophosphamide. Brian was okay until the Friday of that week.  He was fine Friday morning, in fact, had taken me to the train station to take the train to London to visit with my friends, Barb and Kim, and then I returned that same night.  When I text him to say I was on my way home, he said that Breanne was going to pick me up at the train station as he was not feeling well.  After that, he went right down hill, he was not only nauseated, but was having episodes of heaving and vomiting, he was not eating or drinking.  By Saturday, I was sufficiently worried that I took him to emergency which ended up being a total waste of time as they didn't feel he was dehydrated and sent us home.  But the whole weekend, he was very ill, right through until Monday.  Of course Monday was Family Day so a statutory holiday for the doctor's office, so I couldn't call them to tell them what Brian was going through.  On Tuesday though Brian started to feel a little better but it was chemo day again.  So off we go to the hospital for chemo.  After his blood work, his white count showed his white cells were too low for chemo and his sodium was low, so they cancelled chemo and gave him a litre of IV fluid and sent us home.  Brian though was finally feeling well again so we had a really good week last week.  It was my dad's 95th birthday and he wanted to treat us all to lunch at the Mandarin, and Brian was well enough to go.  It was so nice to get Brian out and enjoy visiting with the family and being able to enjoy some good food for a change! 

So, today, February 28, we prepare to go for Brian's normal chemo day, dreading it completely.  Breanne and I had been trying to encourage Brian to just say he wanted to stop chemo, but he wanted to give it one more try and if he ended up sick again this week, he would tell Dr. McCarron that enough is enough; he can't take the side effects anymore.  So we go for blood work and I am secretly hoping that the counts would be low, but no all his counts were good this week and the chemo nurse said chemo was a go.  Brian got the chemo and then we come home.  Around 4:30, Dr. McCarron calls to say that she had just received the report from the orthopedic surgeon and was very concerned that Brian had peripheral neuropathy as this was fairly new (which it was) and that chemo had to stop immediately.  I thought to myself, why couldn't she have got that report yesterday, so that Brian didn't end up getting the chemo today!! It is so frustrating especially if he ends up having a bad week again.  

The best news ever though is that chemo is now stopping without us having to say we wanted it stopped.  It is so much easier when the doctor recommends it!  So she now wants Brian's body to recover from the chemo, wants to get the MRI and EMG studies done and then she will book another bone marrow to see where his disease is at and hopefully it is still in remission.   That is as far as we know for now, we have to wait for all these tests to be done and then we also see her and find out what happens next.  I assume at some point in the future, Brian will start with Revlimid which is pill-form and is considered a maintenance drug for multiple myeloma.  

I can't tell you how excited all of us are for chemo to finally stop. It was really starting to get all of us down and the accumulative effect of the chemo over the last 8 months has definitely played a toll on Brian.  The peripheral neuropathy is really affecting his legs and it has completely slowed him down when walking.  He has to be very careful when he walks as he is somewhat unsteady and we obviously do not want him to have a fall.   Hopefully, now that chemo will be stopped, all these symptoms will slowly get better.  I also feel that his back pain will get better too, and hopefully over time he can wean himself off the pain meds as well.  I think Brian is a bit afraid of going off the pain medications though as they have definitely helped him with the pain and helped him sleep at night, but he certainly doesn't want to have to be on narcotics for a long period of time, so hopefully over the next few months they can be weaned off completely.  

So, I will give another update once all these tests are done and that Brian has had time to recover.  In the meantime, as each day passes, Brian should start to feel good without those toxic drugs.    Maybe, just maybe, we might be able to take a week's holiday somewhere really nice and relaxing in a couple of months once Brian is back feeling well again. Keeping our fingers and toes crossed!!