A little bit of disappointment - December 5, 2016

Well, after our good news last week, we were a little bit disappointed after seeing Dr. McCarron today.  Even though Brian is basically considered in remission right now, it doesn't mean that chemo is going to stop after his fourth round at the end of December.  I guess we either didn't understand the process well enough or became confused somewhere along the way.  I guess what threw us off was the stem cell process.  Apparently, if Brian had elected to go the stem cell route, then after 4 rounds of chemo (each round consisting of 4 weeks), they would then do the harvest of the stem cells and he would then go the route of the stem cell process.  But, if you elect not to go through stem cell or are not eligible for stem cell, then the CyBorD chemotherapy will go on for another 4-5 rounds (each round consisting of 4 weeks).   What we thought was going to happen was that if he didn't have stem cell, then it was a matter of finishing up the 4th round and then go on some sort of maintenance therapy.  So that was a little disappointing for both of us as now we still have to do weekly chemo which will now take us to April/May/June as long as we don't have to miss any.  The good news in that respect is that she is now going to drop the dosage of the chemo medications now that his cancer has drastically reduced, and that should mean that Brian will hopefully not have to go through those couple of days of nausea and feeling unwell every week.    

So, obviously now, our little getaway that we were hoping to plan is now going to have to be put off until the spring.   We now potentially have to be driving in bad weather to get to Kitchener, so I am going to pray that if we have bad weather it is not on a Tuesday!   

Of course, we are very disappointed, especially Brian, as he just wants this over with.  He is sick of taking pills and getting poked and prodded with needles.  He is getting long term bruising on his arms and his belly as they never get a break from the needles!  

So we cried the blues today, but we realize this is all for the best in the end.  We did ask what happens after the full rounds of CyBorD and for sure after that is done, it is just a matter of Brian being monitored and there will not be maintenance therapy after it is done and we hope remission lasts a long time.   

It is all good though, we will just soldier on week by week and get through it.  Then, when the spring sunshine comes back, we will be through and can enjoy a nice summer and maybe, just maybe, a little vacation for us both!  

I'm not sure if I will be blogging before Christmas, so I would like to take this moment to wish everyone a very Merry Christmas and a very happy and healthy 2107!!  

BEST NEWS EVER - November 24, 2016

Since my last post, Brian had to have a bone marrow aspiration and biopsy on November 8, as our oncologist wanted to see how the cancer was responding to the chemo.  Well, yesterday, we got a personal phone call from Dr. McCarron to say that she was absolutely thrilled to tell us that Brian's tumor burden which was at 40% on his bone marrow biopsy in August, had come down to 1% which basically means the cancer is now in remission!!!  She actually seemed quite surprised it had come down that low, and as is usual with Brian, that is quite "unusual and rare", BUT we will take that side of unusual and rare!  

I have no doubt that all the prayers and positive thoughts from all our family and friends and Brian's heavenly angels have played a big role in his recover from this!  We are so very very grateful for this outcome.  We still have to finish up the chemo which will be a total of 5 weeks from now as long as none are missed in the meantime.  That will take us to December 28th as his last one.  Dr. McCarron said she was going to be sending these results off to the stem cell doctors, but after Brian and I discussed it yesterday, Brian has definitely decided against stem cell.  We are just going to continue with the chemo route for the future.  Stem cell is very risky and Brian was just not feeling comfortable about it, not that I blame him. We will support whatever Brian feels is best for him.  

We have a followup appointment with Dr. McCarron on December 5, 2016, and we will see what her plans are for the future, which I assume with be some form of maintenance therapy and close followup; and we now hope that Brian will have a long remission.  

So our short term plans will be to book a last minute vacation sometime in January just to get away for a week somewhere that has a warm climate (Brian's wish!) and just enjoy some much deserved down-time and relaxation.  

We have had the best early Christmas present we could ask for!  

Feeling blessed right now.....

Friday, November 4, 2016

Well, after my last posting, I said that we were going on the Tuesday to get Brian's last chemo that would be the last for Round #2; that unfortunately did not happen.  Even though I had given Brian two neupogen injections the week before, his neutrophils on the Tuesday (day of chemo) came back at 0 again.  We were shocked; obviously Brian's body is having a hard time recovering his good white cells after a chemo session, even with two neupogen injections.  So we were instructed to go home and once again I would administer two injections of neupogen, one on Thursday and one on Sunday, and then we were to see Dr. McCarron on Monday, Oct 31 to followup.  On Monday (Oct 31), we went for blood work and then saw Dr. McCarron.  Now his neutrophils (white count) was at 43!!!  So way high!  She is concerned that Brian's blood counts are all over the place as this is "unusual" with this chemo regimen.  She has decided that she will need to do a bone marrow aspirate to see where his cancer is at and whether it is responding to chemo.   So this procedure is booked for Tuesday Nov 8.  She told us to go ahead with the chemo scheduled for the next day (Nov 1) and she would see us again next Monday before the bone marrow.  So Brian had chemo on Tuesday and so far this week, he has remained feeling well.  That chemo then marks the end of Round #2.  Round #3 will possibly start next Tuesday right after the bone marrow aspiration.  

In the meantime, we had a followup appointment with the stem cell doctor in Hamilton on Thursday.  We were feeling a little hesitant on what she would say about what has been happening with Brian.  I counted how many chemo sessions he had missed because of his abnormal blood work, and he had missed 6 sessions.  Dr. Marcellus sat down with us and said that perhaps stem cell was not going to be a go for Brian.  She wanted to reassure us that stem cell is not the "be all and end all for all cancer patients" and that it was just another way to treat cancer, but not necessarily is it the plan for everyone.  She said that other chemo regimens have really improved over the last 10 years and that another chemo regimen may be what would work best in Brian's case.  She still hasn't completely ruled out stem therapy, but she reiterated that having the bone marrow aspirate was the right step to take to find out how his disease has responded to the chemotherapy so far.  Once the results of that aspiration are available, then further decisions can then be made.  She explained that because Brian is already needing neupogen to bring his white count back, that will not bode well for stem cells and this means they will not be able to get enough stem cells to rescue, and that even if they got enough stem cells, he may not be able to tolerate the Melphalan that is required to be given after stem cells are removed.  She said that what is happening with Brian's goods cells is that his bone marrow is having a difficult time reproducing all the good cells quickly after chemo and; hence, why we are basically having to miss chemo every other week - just so it gives his body a chance to bring his counts back up again.   This could also be related to his having chemotherapy five years ago and why his bone marrow is reacting this way.  

Anyway, I can't say that Brian was disappointed, in fact, I think he was feeling a bit relieved. He has been quite worried about what it may be like to have stem cell therapy as he knows it is a hard procedure to go through.  So, we will await the results of the bone marrow aspirate, see where his disease is at and then follow whatever recommendations Dr. McCarron has now that we know that stem cell may not be what Brian can have now.  She may stay with the same chemo if it is working or change to another regimen that may not be so hard on all those good white cells.   If she stays with the same therapy and it does work in eliminating the cancer, there is the slightest chance that they could try stem cell therapy to see if they could get enough cells for transplant.  But if she finds the cancer is not regressing with the current therapy, then she will have to change the chemo regimen and, in that case, stem cell will be completely out of the picture.  The possibility is that he will then go on revlimid which is the newest drug in myeloma treatment that has come out of clinical trials with a good outcome.  

It certainly is a roller-coaster ride that is for sure.  Thankfully though, Brian is feeling well, has not developed any infection or viral illnesses without his immune system intact, and so life basically goes on as normal with these slight interruptions of doctor/clinic appointments! Brian has also gotten back to doing some exercising which always makes him feel good. One good thing is that Brian's weight has come completely back to normal, in fact, he weighs more right now that he has in years - so he really does look quite well.  No one would actually know there was anything wrong with him!  We are so fortunate in that sense and we feel we will beat this thing into remission even if it takes a little extra time.  Our short-term goal is get in remission and then Brian and I are going to book a lovely vacation on a beautiful resort somewhere to celebrate in the new year!  

Sunday, October 23, 2016

Just a quick update today.  Brian has been doing okay, we went for chemo last Tuesday and although his neutrophils were still low at 1.1 (they prefer at least 1.5 or higher), they still gave him his chemo and I was to give him two injections of the Neupogen, one on Thursday and one Sunday (I"m getting pretty good at giving needles now!!)   Brian had no ill effects until Thursday night when he started to feel nauseated but I made him take an anti-nauseant right away which he did.  Still on Friday, he was not feeling the best, very lethargic, nauseated and "off" as he likes to put it.  Anyway, by Saturday he was feeling good again, so we are good to go until Tuesday when we get the last chemo for  Round #2. We see Dr. McCarron on Oct 31 for a followup and then Chemo round #3 will start November 1st.  I suspect that she may recommend that Brian continues to get the neupogen injection.  I think she wants to keep the white count (neutrophils) up so that he doesn't have to keep missing chemo every other week.  

In other news, we moved my dad to a smaller room at Arbor Trails.  We were finding that having the one bedroom was starting to get too expensive and with downsizing he would save quite a bit of money, so he decided it was worth it.  So, between Bob, Roy, Brian, James and Breanne, me and Roy's friend, John, we got dad moved in good order and everything set up the way he likes.  Since this room is at the farthest end of the building from the dining area and other social areas of the building, we convinced dad to buy himself an electric chair for him to maneuver around the building without causing too much pain and effort on his bad leg.  At first he resisted, but soon we convinced him that with the savings he was getting by moving to a smaller room, it would pay for itself in a couple of months, so he finally agreed and I think he is quite happy that he did now as he realizes it is a long walk for him if he didn't have it.  

Dad so kindly took all of us out for lunch at the Mandarin on Wednesday as a thanks for helping him move and we had a great time!  Dad wants to go back to the Mandarin more often, he was quite impressed.  For those of you reading this who don't know what the Mandarin is - it is a high end Chinese buffet with very good food!  Thanks Dad!! 

Dad's new chair.  

We have beautiful colour to our trees this year.  This picture doesn't do it justice but this is the front of our house.  Very beautiful colours! 

Happy Thanksgiving - October 10, 2016

As I left off in the last blog, Brian had to have some IV fluid administered on the weekend and then he was to start chemo again on the Tuesday.  So last Tuesday, we went for blood work, then chemo was administered as all seemed to be a go from their point of view.  Brian was actually feeling pretty good.  Chemo went as per usual and we headed home hoping the week would go well.  Brian had decided that he was going to stay very low key, stay around the house and not overdo things.  On Wednesday, Brian, Breanne and Jenn had booked in for a "paint night" at Fiona McCool's - called cocktails and painting.  Brian had booked this particular paint night quite a while ago and now was regretting it as he was afraid to go out in public but as he felt good on Wednesday, I encouraged him to go and enjoy a night out with his two "daughters".  They were going to make sure they sat as far away as they could from other people and Jenn and Breanne would sit on either side of him and they were actually able to do that and all three of them had a great night. I was really glad that Brian could do something that he would enjoy.  He needs to feel that life is as normal as it can be, so it was good for him.  Here is the result of their paint night! 

We have proudly displayed Brian's picture on the wall in the dining room! 

Then came Thursday and Brian started to feel "off", felt very nauseated and tired, and lost his appetite.  I encouraged him to take an anti-nausea pill that the doctor had prescribed for times he felt nauseated.  At first he declined, hoping the feeling would go away and then I insisted telling him he doesn't need to suffer with side effects and they give us these medications for a reason.  So he took it, slept another hour or two and then he started to feel a little better.  He got up and had some toast and apple sauce.  On Friday morning, he was feeling better again but then we got a call from Dr. McCarron saying that she felt his neutrophils were getting too low and would like him to have a neupogen injection that day.  CCAC was called and the nurse came Friday night to administer the neupogen and show me how to do it.  She said if and when he needed it again, then they would come to watch me administer it the next time.   But I was hoping that one shot would do the trick and bring up his neutrophils.  

We had a great family weekend!  On Friday night we celebrated Annika's 8th birthday at Breanne/James place and enjoyed watching Annika enjoy her gifts.   Brian was actually feeling quite well, saying he felt 99% normal which was so encouraging.  Jenn's family had invited us over Thanksgiving dinner on Sunday and we were going to have our own Thanksgiving on the Monday.  We had a great time with Jenn's family, it was nice to have a good visit.  Then Sunday we had Thanksgiving at our place as I felt it would be best to be home so that if Brian felt tired, he at least could go and lay down.  We had a nice dinner for which Jenn and Breanne contributed to and helped prepare and clean-up and we had a very nice family weekend!  We are so thankful for our wonderful children and grandchildren.  We truly are blessed.    Here are some pictures we took Monday of the family:  

First of course is Timmie with his head twisted on his back - chilling out by the window; next is the whole family and lastly are the three cooks for the day! 

So off to Kitchener we go today fully expecting to get the next dose of chemo.  After blood work was taken, they found that Brian had absolutely 0 neutrophils again.  It seems that the neupogen didn't do much to help bring them up and they had dropped.  Chemo, of course, was cancelled and Dr. McCarron has now ordered two injections of neupogen for Wednesday, then again on Friday.  We have to do more blood work on Thursday as well to see what his counts are after the first injection.  Then, hopefully his counts will be good enough for chemo to resume next Tuesday.  So here we go again, chemo now delayed once again.  This seems to be par for the course right now.  Dr. McCarron called us tonight to say that she wants to get round 2 finished (which will now be at least 2 weeks - only if all goes well) and then when she starts round 3 - she is also going to book in a bone marrow aspirate.  Since Brian has nonsecretory MM, it means she cannot see how well the chemo is actually working and whether it is the disease, the chemo or a combination of both of why Brian is constantly losing his neutrophils.  Again, she said this is unusual, but she also said that his bone marrow could be immunosuppressed related to the chemo he had for his non-Hodgkins and it takes his bone marrow longer to reproduce the good cells after the chemo kills not only the bad cells but the good ones as well.  

So thankfully Brian has not caught any viruses or infections with not having any neutrophils, so we definitely have to keep him away from any sources of infection, so another week of staying low key.  Hopefully the neupogen will help and it looks like Brian may need to have neupogen now on a regular basis until chemo is finished. Only time will tell I guess.  

September 24, 2016 - A not so good week

On Monday, September 19, we had our follow-up visit with Dr. McCarron as we had finally completed Chemo round #1.  She was pleased to hear that Brian had felt pretty well after the last three weeks and his blood work he had that day was also in the ranges that she was happy with.   So Tuesday, Round #2 would start with an increased dosing in his CyBorD chemotherapy and he also was due for his next monthly pamidronate injection which is the bone strengthening drug. So back to Grand River on Tuesday for the start of the second round.  He got the bortezomib injection in the belly and this time his cyclophosphamide was 16 tablets and the Dexamethasone was 5 tablets.  The pamidronate was an IV in the arm and they sent us home with what looked like a baby-bottle attached to his IV which I was to remove once the medication had administered over a two hour period.  All was going well, I was able to take out the IV from his arm without too much trouble - they will make a nurse out of me yet!  Otherwise, Brian was feeling not too bad.  He had trouble sleeping that night but the next day he didn't feel too bad and was able to spend his day normally.  

Then on Wednesday night he started to feel unwell, started to get severe diarrhea through the night and was feeling quite nauseated.  As the morning progressed, I became quite concerned, so phoned the doctor's office and they were concerned that Brian might have picked up yet another infection - this time C. difficile.  This is a bacteria that lives in our gut and in immunocompromised patients it is hard for the body to fight.    She wanted me to bring Brian in to Kitchener as they felt he needed hydration and wanted to do some stool samples to check for C. difficile.   So off we go to Kitchener and they had set up a bed with IV right in the cancer clinic examination room for Brian which magically had a "flushing" toilet that pulls out from underneath the sink in a cupboard.  Who knew what they hide in their cupboards!  They had me bring Brian directly into the clinic and he was not to sit down or be anywhere near other patients (just in case he had C-diff).  So four hours of IV was given in the clinic and they were able to get a stool sample and send it to the lab.  Brian started to feel a bit better with the IV hydration and Dr. McCarron decided that he could go home for the night but we had to come back the next day for more hydration. It took us a good hour to get home that night due to traffic at rush hour in Kitchener.  Brian in the meantime was starting to feel quite nauseated in the car and thank goodness I had the foresight before we left the house that morning to put some bags in the car in case he was sick as we definitely needed them!  

So back to the clinic the next day for more hydration and the preliminary report on the stool culture did show one part positive and one part negative so Brian was isolated again from other patients and given his hydration, so another full day spent at the hospital by the time they did more blood tests and the waiting around for results.  Dr. MCarron finally came to see us mid afternoon to say that she was happy that his blood work, moreso his biochemistry was back up in the normal range.  Apparently the day before the blood work was showing high potassium and something to do with his GFR which can be indicators of kidney failure.  So with the IV hydration, his blood work had all come back into the normal range.  She was still waiting on the final report on the stool culture and decided that Brian would be ok to go home without admission to hospital but she set up Home Care to come in and give him IV hydration both Saturday and Sunday. Chemo scheduled for this coming Tuesday was now cancelled but we have to do blood work on Tuesday and as long as that is coming back okay, then chemo would resume the following Tuesday (Oct 4).  In the meantime on Friday night, Dr. McCarron called and said that Brian actually DID NOT have C-difficile on the final pathology.  That was good to know but now we are wondering what did cause him to become ill. Was it just side effects from the chemo and his weakened immune system?  It just seems that they really don't seem to know what causes things to happen and I guess there is really nothing that Brian did wrong, it just makes us so much more aware of how our immune system works and how much it does protect us and when someones immune system is compromised, you are so susceptible to all kinds of viruses and bacteria that are everywhere in our environment.  It is almost making me become a germaphobe!  

So the week certainly didn't go as we had hoped but we are just taking each day as it comes and deal with whatever comes up!  So I will end this post with some pictures as promised - one of Timmie taking care of Brian while he is getting his hydration at home today and some of the drawings I was telling you about in my last post.  Brian has not felt well enough to work on anymore drawings this week but maybe he can get back to that next week.  

Timmie taking care of his dad! 



The pictures below are some of Brian's drawing.  My favourite two are the first two. I think he has quite a talent! 

September 10 - Great Week!

Well, things are definitely looking better for Brian.  I think his body may now have "adjusted" to the chemo and seems to be happy enough to get rid of those cancer cells - or at least we hope so.  Brian had blood work on Tuesday morning and all counts were coming back normal or close to normal and chemo #3 was a go.  We went to the chemo suite, Brian had his chemo and within 20 minutes we were out of there.  The doctor advised us to go to our local lab (Life Labs) on Thursday to get the blood work done there so we didn't have to travel all the way to Kitchener and she would phone on Friday if anything was amiss.  I was quite happy to go to LifeLabs as they allow the patient to go on line and get their own results.  I think it is great that the Labs are doing this now as I think a patient should be able to see their own results.  Brian had no side effects after Tuesday's chemo, about the only thing that we noticed is that he does have trouble sleeping some nights but that is probably due to the dexamethasone part of the chemo.  We went for the blood work on Thursday and I was checking the results by Thursday night and I was quite pleased to see that now Brian's white count and neutrophils are actually on the "high" side.  They are now "slightly above normal range".  Brian's sodium was just one point below the "low normal" range so that has improved too.  

Brian has felt good all week, in fact he was starting to get quite bored with not much to do since I wouldn't let him go to any public places.  So I suggested that maybe he should look into doing some drawings or paintings as Brian is actually quite talented that way and maybe he could learn more about it and practice.  So we went to Michael's and we bought a couple of "how to draw" books and a book to actually do the drawings in for practice and some pencils.  He came home and got started on it and is now "hooked" and quite enjoying it.  I will have to take some pictures of his drawings.  I am absolutely amazed at his drawing ability and he said the "how to" books are really quite helpful and he is actually enjoying it. I really am blown away by his drawings and he has only just started! 

On Thursday and Friday, Brian was feeling so good that he decided to get back to doing some light exercise and he also went out for a bike ride around our neighbourhood and Brian has felt well enough to go out for our daily walks with Timmie.  Brian is much happier when he can get his exercise in and of course that has to bode well for his fight with this cancer.   We rounded out Friday with a visit to my dad's and went out for supper with Roy and Pat.  It made us feel almost normal again and it was great for our morale.  

We plan to spend a quiet weekend and then Tuesday will be chemo #4 (which will end Round #1).  Two more rounds or a total of 8 more weeks to go with CyBorD and then the big reveal will be another bone marrow biopsy to see if he shows a reduction in cancer and/or indicates a remission.  If all goes well to that end, then stem cell will be next.  

We are getting there...slowly but surely! 

Friday, Sept 2, 2016

Good news!! We got through a whole week without any real major issues!  Here is how the week went since my last posting:  

All last weekend, even though we were hoping for a nice drug-free weekend and Brian feeling well; it didn't turn out that way.  He was not feeling well at all and we were both starting to worry that things were not going as we had hoped.  We went on Monday to the chemo clinic for Chemo day #2 but when we told them he had not been well over the weekend, they did not want to give the chemo.  They also noticed that his sodium level was dangerously low and they immediately hooked him up to IV Saline for the whole day on Monday.  Chemo was cancelled but we were there until well after 5 o'clock and the doctor (filling in for our doctor who was on vacation), said we would have to return tomorrow and have the sodium checked again and decide whether chemo was a go.  We returned Tuesday and it had come up a bit but not enough; so IV Saline again, this time only for 2 hours and then they gave the okay for chemo.  Brian was starting to feel a bit better though so that was a good thing.  We then had to return again on Wednesday for blood work.  Yet, again, the sodium was not high enough and the doctor wanted another 4 hour IV saline done, so for us another full day at the hospital!  They went over with Brian that he needed to continue to take in a fair amount of fluid but not necessarily just water, he needed some Gatorade which has sodium in it  (but not too much as his potassium was high), eat "potato chips" or anything with high salt - first time ever a doctor has recommended eating "junk food" and generally take in other fluids along with the usual amount of water you should take in a day.  So we had a break on Thursday with no appointments and Brian did what he was told - took in a lot of fluid - he counted it this time and it was approximately 125 ounces of fluid he took in on Thursday alone!  Needless to say he was running to the bathroom a lot!  He was really starting to feel good though, he was getting back to his normal self again. 

He had absolutely no side effects (yet) from the chemo!  So we had one last blood work appointment for this week which was today.  This blood work was to check his sodium level and also to see how much his neutrophils (white count) may have dropped due to the chemo.  As you all may remember, in the first chemo round, four days later Brian had lost all his neutrophils and ended up in hospital.  So after the blood work, we waited for the results and all his counts came back normal!  We were ecstatic to say the least!  His sodium had risen quite nicely from a low of 126 to now 135; his neutrophil count was 9 which apparently is a little above normal so he was good to go for the weekend AND he did not need to have the neupogen injection which was the plan for today if his neutrophils were dangerously low. 

So all in all that was a great week for us, other than the time spent at K-W, we can handle that - better than being admitted to hospital.  They certainly did keep an eye on things this time.  Brian is feeling good and we decided that we would go to the Keg tonight for dinner in celebration.  Now we have a whole three days of Brian feeling well and no doctor/Cancer Clinic appointments until Tuesday.  Tuesday will be chemo day #3 and we will see what the next week holds for us and I pray that we get through it just as easily as we did this past week and maybe even a better week if his sodium count stays where it should be. Obviously it was the low sodium that had made Brian feel so rotten last weekend.  

So all is good for the moment and we are happy that things now seem on the up and up and Brian is hopefully tolerating chemo well.  14 more weeks and then chemo is done and then maybe stem cell if all goes well!   

Hope you all have a lovely Labor Day Weekend and I know that my grandkids are so looking forward to going back to school on Monday (NOT!). Breanne is happy though....

Friday, August 26, 2016

I must say that Brian and I are so happy to finally see Friday arrive.  It has been a whole week of running to medical appointments and we are both feeling pretty exhausted by it all, both mentally and physically.  We need the weekend to just give us some time to breathe and relax and just stay put for two days.  

As I said in my last post, we were awaiting for a CT scan and on Tuesday morning we had a call from K-W to report that afternoon for a CT scan and to wait while it is read and then see Dr. McCarron.  My niece, Cathy and Christine, were here for a visit from States and they had just come over for a visit and we had to cut it short as we were heading off to Kitchener. The CT scan was done and it came back normal.  What a relief that was as Brian and I were both feeling a little nervous about what the results may show.  Then back to see our ophthalmologist, Dr. Johnson, on Wednesday who feels that Brian just has an episcleritis or uveitis of the eye of unknown origin and he put him on some Tobradex eyedrops every two hours for a couple of days.  In the meantime, Dr. McCarron was not feeling comfortable herself that the eye was infected and we had finished the antibiotics from the hospital stay, so she decided to give him another 7 days of a different antibiotic.  Anyway, his eye does seem to be getting better now but still not 100% yet.  

Then off to see Dr. Marcellus (hematologist/oncologist) for our stem cell consultation in Hamilton on Thursday.  Breanne came with us and thank goodness she did as we would have struggled trying to find Juravinski Cancer Centre on top of the mountain.  Of course, Breanne knows that area well since she went to Mohawk College but once again we were having to figure out a way to get around yet more road construction.  It seems that every city is tearing up main artery roads and when you don't know the city, it makes it a real challenge finding your way around but Breanne managed to figure it all out and we arrived on time.  

Our consultation was long and once again we were given so much information, it was quite daunting as stem cell is not going to be an easy thing to go through.  They emphasized that stem cell transplant is not a "cure" but it can give the longest remission times and helps to keep the disease "controlled".  It is up to Brian if he wants to go this route and if he decides yes it is what he wants to do, then all other conditions have to be met first.  He has to have the 16 weeks of CyBorD chemo first and be able to tolerate it, then because his myeloma is the "nonsecretory type", he will have to have another bone marrow biopsy at the end of it to make sure that the chemo was successful.  As I had indicated in earlier posts, Brian's type of myeloma does not show up in the blood or urine and it can only be detected through tissue diagnoses.  So if he passes through tolerating the CyBorD for 16 weeks and the bone marrow shows it works, then he goes for stem cell retrieval.  This also has some limitations as they have to get at least 2 million stem cells but prefer to get 5 million.  They will do the retrieval over a two day period and as long as they get the minimum of 2 million cells, it is frozen, then Brian will be admitted to hospital for two weeks while they administer Melphalan - very potent chemotherapy drug to rid his body of any cancer cells (but this also rids the good cells).  Once the Melphalan has done its job, then re-infuse Brian's stem cells back and it takes anywhere from 3 - 6 months for these stem cells to do their job in bringing back all his white cells again, sometimes this can take up to a year but as each day passes, the patient does start to feel better.  The risk is that myeloma can return at any time, sometimes only three months later, sometimes up to two to 10 years later.   They certainly don't beat around the bush with all that they tell you and during this time the patient does not feel very well and the risk of infection is high which can complicate things.  

So we left the appointment with a booklet in hand going over all that they told us and Brian was feeling a bit overwhelmed by it all.  By the time he got home, he had a very bad headache and had to lie down.  

Having said all the above though, Brian wants the stem cell and is ready to go through all the steps needed to get there.  So we are back to chemo with CyBorD on Monday (Aug 29) and we hope he now goes through the next few weeks without any major problems.  The doctor is holding off on the Neupogen if she can; so after chemo on Monday, Brian has to get more blood work to see if he still has enough neutrophils and if all is going okay, he won't need the Neupogen but if they have fallen too low, then Neupogen will be given on Thursday by CCAC.  

I know that I will feel better about this whole thing if Brian does well next week and continues the subsequent 16 weeks without an issue.  Of course, they say that what happened to Brian was "highly unusual" for this type of chemo to completely deplete his neutrophils.  I think I am getting tired of the words "rare" and "highly unusual" as it seems that everything that happens is actually not suppose to happen!   

So that is it for now, I hope this is not too boring for people that want to keep up on the news.  I won't blog again until we get through another week unless we run into problems; so if you don't see anything written, that is a "good sign" that things are going well!  

Monday, August 22, 2016

Poor Brian has been suffering with his eye issue all weekend.  It was bothering him so much, he had to keep taking Tylenol, which he hated to do as he feels he is already taking way too many medications.  It was the only thing that gave him relief though as it was really getting him down and at times was making him feel nauseated.  So we saw the oncologist today and the good news is that his white count (neutrophils) are good.  They are at a level that they are happy with.  Dr. McCarron was concerned with the eye though and she was not sure if it was shingles or not as he really didn't have other symptoms of shingles like a rash/bumps or tenderness to touch.  I told her that I had already taken the step of phoning our ophthalmologist that morning and they had arranged an appointment at 5 after he had finished his day.  Dr. McCarron said that she did not want to start chemo again until we made sure there was not an infection going on in the eye and she asked us to have Dr. Johnson page her once he had seen us.  Her thoughts were that if we could get this cleared up by the end of the week, she would then like to restart chemo as of Monday.  She also explained that Brian's white cells were more than likely going to deplete again after chemo, so she gave us a prescription for Neupogen and then casually asked if I was okay giving him the injection in the belly.  I said no way I was not comfortable doing that so she laughed and said she will arrange CCAC to do the injection and they could potentially show me how to do it.  We shall see, I will make that decision at a later date!   So the plan is that the day after chemo, he will get the Neupogen injection and then again four days after that. Hopefully that will keep Brian in good stead with his neutrophils.  The neuopogen stimulates the bone marrow to produce the neutrophils.  In the meantime, Brian will not venture to any public places and we will just stay around the house to keep him as free of viruses as we can.  We went to the hospital pharmacy where we have to get all of Brian's drugs and got the 8 bottles of neupogen at the cost of $1500!!  Thankfully though our insurance covers the cost of that although funny enough since CCAC is doing the injection, the clerk said that CCAC covers that cost; so whatever, that is okay with us!  Thank goodness we live in Canada is all I can say and have such great medical coverage.  I can't even imagine what it would be like for people that live in the States or any other country for that matter who do not have medical insurance.  We are truly fortunate to live in this country of ours.  

So we visit the ophthalmologist and he said he could not see anything wrong with the eye per se, just a bit of inflammation at the top of the globe which may have been irritating his eye and hence the swelling and redness on the outside.  He said it could be shingles but he could not be 100% on that since, again, there were no other symptoms of shingles but his thought was that there may be something going on in the sinuses above the eyes and he suggested that a head CT scan would be in order just to make sure there was nothing brewing in this sinuses.   So he called our oncologist and she is going to arrange the head CT scan, and call us tomorrow with the time and date.  I think we have pretty well filled up our week with doctor appointments, back to see Dr. Johnson on Wednesday for a double check on the eye, go to see the doctor in Hamilton for stem cell on Thursday, back to see Dr. McCarron on Friday for further blood work and assessment and somewhere during this week, getting in a head CT scan.  Lots of driving back and forth for us this week!   

I will wait to do any updates until Friday and hopefully by then we will know where we stand with respect to chemo starting again and we will have more information on whether stem cell may be a go for the future.  In the meantime, I hope that Brian gets some relief from his eye so he can enjoy a few days of being chemo-free and having a few days of feeling well.  

August 20 - Brian is home from hospital!

Finally Brian's neutrophils are back!  He had to have two shots (in the belly) of Neupogen and that seemed to do the trick.  As of Friday, his white cells and neutrophils have slowly been rising and they said it was okay for him to recover at home on the oral antibiotics.  So yet, more medications to add to our list!  Thankfully though, we didn't have to do the chemo oral meds this past week as chemo is on hold until we see our oncologist on Monday. So at this point, Brian is on antivirals and antibiotics to keep infections and viruses at bay.  The doctor at the hospital told us that this may happen at every chemo round and they have to add Neupogen to his regimen a day or so after chemotherapy to help bring up his immune system back up again.  Our oncologist has asked us to check with our insurance company to see if they cover Neupogen as it is very very expensive.  I called on Friday and they do cover it - so that we a huge relief!  

We plan to just spend a quiet weekend at home watching the Olympics, sitting in the garden, and taking some short walks.  Brian feels like he is being put through the ringer, understandably so.  I actually think that Breanne has come up with the diagnosis he had - shingles!  When Brian started to go down hill on Monday, he was complaining of a pounding headache on the right side of his face towards his ear and I noticed (all week) that his eye was bloodshot and glassy-appearing.  Now that he is home, it is really quite noticeable and his eye is half closed as if it is swollen.  Of course, this happens on a weekend when it is harder to call a doctor about it!  So I was telling Breanne this morning and she said I bet he has shingles and when I googled shingles of the eye, that is exactly his symptoms.   They did warn us about shingles and that was one of the reasons he is on prophylactic acyclovir. I am going to call our ophthalmologist on Monday as I think Brian should have his eye looked at as he just had an operation on his eye a few months ago and maybe they should be checking his pressures.  I just wish we had noticed this while he was in hospital and they could have got him looked at there.  I am positive though that this was the cause of his problem on Monday and since he had no immune system to fight it, that is why he started to go downhill.  They couldn't come up with an infection anywhere, so that was probably it. Again, we have to be more diligent on letting doctors know even minor symptoms as they possibly would have picked up on this right away, just as "Dr. Breanne" did!  

We have an appointment on Monday to get more blood work and to see our oncologist.  We also got called from Hamilton on Friday and we have an appointment for a consultation with the stem cell doctor on Thursday.  I'm not sure if they will start chemo again this week but we shall see what Dr. McCarron has in store for us.  

I will update again on Monday when we know more.  Thank you so much to all that have visited Brian in hospital, sending e.mails and texts; we feel loved and know that people care and that really does go a long way.  I will try to respond as much as I can but some responses may be delayed depending on where we are with Brian's care.  We are feeling the love though!  

Quick Turn of Events - August 16, 2016

Well, Brian was doing well but within a matters of hours on Monday, he started to feel very unwell.  He was fine Monday morning, we were both feeling good that here we are 4 days after chemo and he is feeling not too bad at all.  Then early afternoon, Brian started to feel unwell, said he felt tired and achy, and we put it down to him trying to do too much - you just can't keep Brian down for long.  We had taken a nice 5K walk that morning and getting some groceries, so it made sense that he may feel a little tired.  So he went to bed for a while in the afternoon and I kept checking his temperature and all was normal.  He got up for supper but right after eating, he just completely went downhill fast.  He started to get chills and was shaking, almost like he was coming down with the flu, his eyes were all glassy and he felt hot but still his temperature was normal.  He decided to go to bed early and watch Olympics on TV but within the hour was up and saying when they ask how you feel on a scale of 1 to 10, I am feeling 11 right now, maybe I should take some Tylenol.  I said let's take your temperature first and I was shocked to see it had shot up from 36.6 earlier to 38.0.  Within five minutes, it was at 38.3 and 15 minutes later 38.6.  I said we are going to the hospital.  We were told any temperature of 38.3 lasting for more than an hour we had to head to the nearest emergency.  The Emergency Room was absolutely packed with people. Brian grabbed a mask to wear and I told the security guard he was a chemotherapy patient and had a high temperature.  He immediately notified the nurse and they triaged Brian immediately and put him in a bed - we were lucky to get one as the emergency inside and out was full of people.  I must admit that I am very very impressed that they work on patients that need help immediately although you do feel sorry for the people who have probably been waiting hours.  We all know what that is like.  They did tests immediately and found that his red cell count was 3.1 (normal over 6) and his neutrophil count was 0.  This means he had absolutely no immunity.  The neutrophils are what help the white cells fight infections.  The chemo had obviously completely eradicated his good cells (hopefully it was doing its job on the cancer cells too, but very scary when it takes out your immune system). They were not able to figure out where the infection was coming from either.  They told us that he would be admitted so they could start high dose antibiotics.  So I left the hospital around 2 o'clock knowing that Brian would be in good hands.  

I arrived back to the hospital this morning and his blood counts were still dropping.  His red blood cells were now 2.6 and he still had 0 neutrophils.  The hospitalist contacted our oncologist who instructed them to give Brian Nupogin which is a drug that builds neutrophils quickly.  Our oncologist's nurse phoned me to say that the scheduled chemo this Thursday was going to be postponed until Brian brings up all his blood counts again.  This means he will be in hospital for possibly 3 or 4 days, all depending on how long it takes so they he can receive high dose antibiotics plus this Nupogin.  Thankfully though, Brian's temperature had come back down to normal overnight with the help of Tylenol they gave him.  He was certainly feeling a lot better this morning, so I certainly felt relieved by that.  

This was certainly a real eye-opener for us though at how quickly things can change and I must admit that this makes us both nervous about the next round of chemo.  If it happened once, will it happen like this again?  I am sure our oncologist is going to explain all that to us and possibly they lessen the dose of chemo.  It certainly doesn't make us feel too good about it but we have full trust in our doctors and we were very very happy with the care that Guelph General gave Brian yesterday.  All the doctors and nurses were wonderful and they really do take care of you.  We are so grateful for that.  

I will continue to keep updates coming and hopefully Brian is home from the hospital by the weekend and we can have a bit of normalcy before the next round.  

First Chemo round - Day 1 - August 11, 2016

Brian was feeling a bit anxious Thursday morning as we got ready to head off to K-W Hospital for his first CyBorD chemo round.  We had a 30 minute appointment with the pharmacist first who explained what the medication will do and the side effects to watch out for.  It all seems very intimidating when they have to tell you all the worse case scenarios but in the next breath say - no worries those particular side effects are rare!   

So the breakdown of medication on chemo day (which will be every Thursday) is: 
Ondansetron: morning and evening on chemo day - this controls nausea and vomiting.
Acyclovir - twice a day every day for three months - this is an antiviral to help fight viruses as the chemo will deplete his white and red blood cells and he will not be able to fight viral infections. 
Sultratrim: Three times a week for three months to help fight bacterial infections - especially against pneumonia.  
Cyclophosphamide:  12 tablets!!  on chemo day. 
Bortezomib:  Injection in belly on chemo day. 
Dexamethasone:  5 tablets a day - pulse therapy - four days on, four days off.  
(the last three are what constitutes CyBorD - the actual chemotherapy)  
Pamidronate IV infusion - once a month to strengthen bones.  

After that consultation, off we go to the chemo suite and Brian selects the "chemo chair". The nurses, as always, are so so nice and reassuring.  They bring him a warm blanket to wrap around his arm for the IV and then get the IV set up with Saline.  We were thinking all the medications was going to go through the IV but then the nurse said this IV is for your pamidronate (bone strengthening drug) and the Velcade (bortezomib) will be a needle injection in your thigh or belly - then she walks away!  Brian and I look at each other and say 'in your belly?!?" - Brian says I think I will ask them to do it in my thigh.  I quickly text Breanne who proceeds to "google it" and says "get it in the belly" it is apparently tolerated better as the injection is subcutaneous (under the skin) and there is more fat to absorb it. So when the nurse came back with the needle, she agreed it was better in the belly area and so that is where it went.  Not bad, Brian said, just stung going in but injection was quick.  Then we sit for 2 hours while they inject the pamidronate.  I went to Tim Horton's and got us some coffee and Brian sat and listened to his music and as he had to drink a lot plus the Saline infusion, he was back and forth to the bathroom every 10 minutes!  That's good though, helps flush everything through him.  

So far so good, I was anticipating Brian not feeling the greatest after we got home, but as it Brian's normal - he felt fine.  He went to bed that night and woke up in the morning feeling normal.  Then said maybe I should go for a bike ride - and I said - are you kidding me, you are not going out on the your bike!  I had to go for a hair appointment and he promised me he would not go on his bike but he went for a 3 K walk instead - in the heat!  I am so thankful he tolerates things so well.  Brian is so good about following orders such as drink a lot (8 glasses a day) to help flush through the medication and keep his body well hydrated, eat healthy (that's my department), and exercise by walking daily (we both do that anyway).  
I certainly hope it continues this way for the next three months!   The most important thing is to keep him infection-free so we are staying away from any sick contacts and not going anywhere there are crowds of people and handwashing will be important for Brian.  So glad it is the summer-time so we can enjoy going for walks and getting outside (when it cools down a bit that is!).  So that is it for now, I will report again after the second round of chemo next Thursday.  Thanks to everyone for their prayers and positive thoughts - it all seems to be working! 

August 9, 2016 - Brain's update

Well, we got some good news today in that the Hamilton Stem Cell Program has agreed to have a consultation with Brian about the stem cell transplant.  There is still no guarantee he will get it but at least they are willing to see Brian and give their opinion.  In light of that, Brian will be starting the CyBorD chemotherapy (three rounds - each round consisting of four week intervals).  Round 1 starts this Thursday.  Today we were bombarded with more information on what medications he will be on and what side effects we are to look out for and they have given us more prescriptions to help with the side effects.  Antibiotics, antivirals, steroids, it just seems to go on and on and hard to keep straight in our head.  On Thursday we meet with the pharmacist before chemo starts so he can also go over it all again. Hopefully we can keep the oral medication straight in our head on when he has to take everything.  I have already started a "drug calendar" so hopefully that will keep us on top of things.  Once we get into the routine, we will be fine, it is just the thought of it all right now.  As the old saying goes, one step, one day at a time!  

In the meantime during this three month period of chemotherapy, we will get a call from Hamilton for an appointment regarding the stem cell transplant and find out what that entails.   

Last week, since we had no medical or doctor appointments, we took a little break from things since Brian is feeling well at the moment and took a last minute get-away to Niagara-on-the-Lake.  We stayed a nice little inn-type place called Riverbend Inn.  We had a beautiful room, took a bike tour (although it was a little too hot weather-wise - we ended up cutting it short), did some shopping and had some great meals.  It was nice just doing something normal and fun for a change.  Here are a couple of pics...

Beautiful staircase going up  to the rooms

It was like living in a different era for a couple of days!

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!