Tanner explained to Mark about the progression of his symptoms - the added problem of the muscle spasms in his arms and legs in addition to the back pain - and then he also talked to him about the fact the he's started "jerking" more and more when he's sleeping (and sometimes when he's sitting at rest and doing things like playing video games). His body will just jerk... I noticed it myself when I was driving him back and forth to his appointment with the Orthopedic Surgeon over in Dallas last Friday.
Mark told him that he truly feels like the majority of all of these issues are being caused by the chemo medications - most especially the Velcade.
We discussed the fact that Dr. Berryman had said a few months ago that since Tanner is handling the maintenance chemo so "incredibly well", he saw no need to change his treatment at that time... but now that Tanner is having all these issues - back pain, leg and arm muscle spasms, increased stomach acid - he thinks it's time to consider possibly changing things up a little bit.
He asked Tanner on a scale from 1 - 10 (with ten being severe, almost intolerable pain, and one being minimal) how he would rate his "average" daily pain. Tanner told him around a 6-7. Mark told him that was a high enough pain threshold that he thought it was time to consider some other treatment alternatives.
He told him that "maintenance" treatment is usally a lower dose of velcade every two weeks - but instead Tanner has been taking a full dose every week for 2-1/2 years. He said that the doctors might consider lessening the dose, moving the appointment to every two weeks instead of every week, or that they could even consider stopping the velcade all together and just treating Tanner with the Revlimid (which he has been taking in addition to the chemo). He explained that there are no proven "protocols" verifying that the continued maintenance chemo results in a longer remission period than just the maintenance drugs by themselves but that they are treating many many people with the chemo - revlimid combination to see if it results in a longer cancer free period.
Tanner said something about being an "experiment" and Mark told him that, yes he was "to a degree" along with "many other Multiple Myeloma patients" around the world.
He went ahead and cancelled the chemo treatment that was scheduled for today and told Tanner to come back next Friday for his chemo appointment like usual - and we will also see Dr. Dean that day and discuss what has been happening. He told Tanner to pay special attention this next week to determine how he feels and see if he notices any difference in his pain level and discomfort after skipping this week's chemo treatment.
He has an appointment with Dr. Berryman, his main Oncologist, in Dallas next Wednesday, so we'll also discuss all of this to him at that time and get his input.
Tanner was quite relieved to have a break. He has chemo every Friday and then doesn't feel very well for a few day following the appointment. Then he starts feeling a little better, only to have the next week's treatment and the whole process starts over again. The idea of a two week break really appealed to him - though I could tell he was concerned when Mark mentioned the possibility of stopping chemo treatments all together. Tanner told him the idea of stopping chemo "wasn't completely insane" but that he wants to do what the doctors feel will be best.
He, Cearra, and Trevor all plan to go out to Hurricane Harbor this weekend and have a day playing on the water slides. Hopefully, after skipping this week's chemo, he will have a fun day soaking up some Vitamin D and just having fun!
Me, myself, I'm hanging in there... I worry about my boys all the time, but I've had my personal life under control for a while now and I'm truly living in the moment. How can you enjoy today if you're always worrying about tomorrow? That's saying a lot for me...
Keep love in your heart. A life without it is like a sunless garden where the flowers are dead. The consciousness of loving and being loved brings a warmth and richness to life that nothing else can bring... Oscar Wilde