July 26, 2016 - Update on Brian

I thought I should give an update here so people are not wondering what is going on with Brian.  Our oncologist has been on vacation and has just returned this week, so we have been waiting to hear what next steps we take.  Brian did have an appointment to see a radiation oncologist last Friday and his recommendation was that Brian did not need radiation as he was not in any pain from the mass on his ribs.  He showed us a picture of where the mass was located by printing off a CT image for us and you can just see a slight bump that is arising from his ribs right where the rib joins the spine.  He said as long as that is not causing Brian any pain, there is no need to radiate and the bone strengthening drug, pamidronate, will take care of it along with the chemotherapy.  He did ask us though if we had heard from Hamilton about a stem cell transplant and we said we haven't heard anything yet, but that made us hope that maybe he has been accepted and we just have to wait for a call.  We will find out for sure though when we see our oncologist next.  

Yesterday, we received a call from the hospital with our next appointments and Brian sees our oncologist on August 9 and he starts chemo two days later (August 11).  He has two injections on that date - one for the pamidronate (bone strengthening drug) which is a two hour infusion and one for the bortezomib (Velcade) which takes about 20 minutes.  He will have this bortezomib injection every Thursday for the next four weeks.  The other two drugs of the chemo regimen (cyclophosphamide and dexamethasone) will be taken orally.  This drug regimen is called CyBorD.  This will be considered round one and I think he has at least three or four rounds but we will find out more when we see Dr. McCarron on the 9th.  

We will also find out whether he is accepted for stem cell transplant at that time as well (we hope!) From our understanding, he has to have three rounds of chemo before stem cell transplant can be done anyway.  So we are still keeping our fingers crossed that stem cell is in his future but if not, then we hope that he gets a good remission just from the chemotherapy alone.  

Right now, Brian is feeling extremely well which I think is due to the dexamethasone (steroid) and it kind of makes him a bit hyper where he just can't seem to sit still.  He has been out riding his bike almost every day and doing his regular exercises in the evening. He just wants to keep his body in as best shape it can be before the major chemo starts.  He is eating like a horse and has actually gained 5 pounds since starting the dexamethasone, so that makes him feel good as well.  To see him so well right now, it almost seems surreal that he actually has this cancer.  Life almost seems normal and you just wish it could continue on this way, so we will take that for now and just enjoy the calm for the next couple of weeks until chemo starts and then be ready for the fight! 

I will do a further update after we see our oncologist on August 9.  

Brian's journey with multiple myeloma

It has certainly been a long time since I have written in our blog.  I see that I last wrote of our visit to Hilton Head last fall.  Since then, we did return to Hilton Head for a month’s stay in February/March and really enjoyed it.  The weather was great, the beach was awesome being a dog-friendly beach and we walked miles every day with Timmie in tow (sometimes in his doggy-buggy when he did not like the heat and would just sit down refusing to move). 

In hindsight, it was like the calm before the storm so to speak.  Upon our return from Hilton Head Brian started to notice that he was slowly losing weight and not feeling “right” and experienced some tiredness and fatigue.  We thought he may be getting a recurrence of his lymphoma so we contacted our oncologist who proceeded to give Brian a battery of tests and investigations.  A CT scan showed a tumor on his 8th rib near his spine for which he then had a needle biopsy and a bone scan.  The result of the biopsy was a plasmacytoma; next step was a bone marrow biopsy which was done last week.  Yesterday we went for the results and it turns out that Brian now has multiple myeloma which is a different cancer than his non-Hodgkin’s lymphoma although is still a blood/bone marrow cancer.  It is a very unusual presentation as it does not show up in the blood work, the only reason they know it is myeloma is because of the tissue diagnosis.  This is called non-secretory multiple myeloma.  So the appointment went on for almost an hour as our oncologist explained what that entails and the treatment going forward.  Thank God Breanne was with us to keep all this information straight.  It was information overload for Brian and I, probably worse for Brian as I understood what she was saying where for Brian, it was flying right over his head! 

So treatment started yesterday preparing his body for the chemotherapy.  He was started on dexamethasone (steroid) high dose, four days on, four days off for the next three weeks along with an antibiotic he takes three times a week.  I don’t even know how he swallows the antibiotics – it looks like a horse pill to me!  The ultimate treatment after this would be a stem cell transplant but Brian is just one year over the cut-off age of when they offer this kind of therapy for fit individuals.  Our oncologist has written to the transplant coordinator in Hamilton to hopefully get an exception in his case as he is so fit and healthy otherwise.  He has no chronic illnesses that would interfere with treatment and as you all know, Brian is very fit – running and biking – in fact last week he was out a couple of times on his bike – he truly is amazing!  So we have to wait and see if they will accept him for a stem cell transplant but if he is rejected, he will then have CyBorD chemotherapy over the next three months. 

So that is it in a nutshell so to speak.  We are praying he is accepted into the stem cell transplant program.   Although the therapy will be hard and he will be in hospital for a few weeks with no immune system while they administer strong chemotherapy drugs, it does have the best outcome and at the end of it, he will have a brand new immune system.  We also are very grateful that we may have caught this early and he is in early stages of myeloma and will respond to whatever therapy he gets and we can get him back into remission for a while.  He did it once with lymphoma (still in remission), he can do it again.  Brian has a great positive attitude and he has one goal in mind – he will beat this for a long remission again.  I will blog about his journey for those of you interested to know how he is doing and Brian is okay with that.  It also helps us keep track of dates and therapies which we may have to refer to later. 


We appreciate all the prayers and positive thoughts we get from our army of family and friends! It goes a long way in the treatment process as well!