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!