Thursday, June 1, 2017

June 1, 2017

I finally had some time tonight to update how Brian is doing.  I always know when I have been remiss in keeping up on my blog when I start hearing from people hoping that Brian is doing well.    So, believe it or not, that question is very hard to answer.  Yes, Brian is better now that chemo has stopped, and we are grateful for that, but he is still far from being his "usual normal" self.   The disease and the chemo has definitely taken a toll on his body, the chemo-related peripheral neuropathy in his legs is very troublesome.  We had hoped that by this time, he would have started to feel better, and that the peripheral neuropathy would be easing, but that is definitely not the case.  There are some days I think the neuropathy is worse.  We saw a pain specialist at the Cancer Clinic last week, who has now taken over the management of Brian's "pain" medications, as the gabapentin that was given for his neuropathy certainly doesn't seem to be doing anything.  The doctor told us that gabapentin is always started at a low dose as it does have significant side effects and you have to slowly introduce so that your body gets used to it.   She has given us a regimen on titrating it up to a higher dose, and then we revisit with her at the end of July to see if there has been a difference in his neuropathy.  Brian started the new dosing last week, and still we are not really seeing any difference, and one of the major side effects is drowsiness, and that certainly is the case now.  Brian fatigues very easily now, he finds that he has to rest a lot, and he has to keep his legs up in order to try to stop the aching.  There are nights he sleeps on the couch as he just can't get comfortable in bed, even despite medication.   He is trying to keep up some form of exercise with walking, and he has even tried to go out on his bike to ride around the neighbourhood, and even with doing that it seems to completely drain him.  He often will feel nauseated in the late afternoons, and he will still need to occasionally take his antinausea pills as well as his morphine pills, although I have to give him credit that he has really cut back on the morphine.  He basically only takes a short-acting one in the afternoon and one at night before bed, and he is thinking that he may try to eliminate that one now that the gabapentin has been increased since the higher dose of gabapentin seems to help him sleep.  

So, we are not sure what to think, will he get better with time, is this the new norm, no-one seems to be able to answer that question.  All patients react differently, so hard to tell.  So, we will just have to shoulder on, and hope that things will get better with time.  Of course, Brian is very frustrated as all he wants to do is go back to being able to do things again.  

We are taking a 3-day trip to Niagara on the Lake in a couple of weeks.  I felt that we both needed a change of scenery, and just enjoy some time away from home, and we will just do what Brian can manage.  I have booked a nice B&B, and we are going to take our bikes and do a bit of biking, as biking is easier on Brian's legs than walking.  We can go out for some nice dinners, and we are going to go a see Me and My Girl at the Shaw Theater.  

Then at the end of June, we leave for Florida for a couple of weeks.  We are driving down with the dogs, and hopefully the long drive in the car won't be too troublesome for Brian, but we will take his pain medication and take it if necessary!  The kids will all fly down for a week, and again we don't plan on being too active, just sitting around the pools, and enjoying some meals out.  Of course, the kids will probably go and do some things on their own, but Brian and I will just enjoy some relaxation and take care of the dogs on the days they do other things.   

We also had some very exciting news in that my cousin, Liz, and her partner, Chris, will be coming from Australia to see us for a couple of weeks at the end of September.  I am so excited for them to come as we haven't seen Liz in  28 years!  We are planning on taking them to a few places in Ontario, of course, Niagara area, St. Jacob's, maybe Toronto, and plan on taking a few days to visit Ottawa.  So we are both very excited for this visit, and to meet Chris as well.  

Anyway, that is about it for now; I probably won't blog again until after our return from Florida.  I certainly hope that soon we will get consistent warm weather!  

Monday, April 10, 2017

April 10, 2017 - Brian's update

Feeling a little apprehensive this morning we headed off to see our oncologist this morning and we got the best news ever - Brian is still cancer-free!  His MRI has shown no malignancies or bone lesions (although still shows degenerative disc disease in his spine) and his bone marrow was clear!!  What a relief for us both, I think we were bouncing when leaving the hospital and then decided to celebrate and went to Red Lobster for lunch!  

Having said that though, Brian is still far from feeling normal.  His peripheral neuropathy is really not any better than it was a month ago when chemo stopped, he still gets nausea for which he needs to take anti-nausea medications and his appetite and energy are certainly not what he wants it to be.  The chemo has done its job by ridding him of the cancer but has been very hard on his body as well.   Dr. McCarron has prescribed gabapentin which she hopes will help with the peripheral neuropathy, and otherwise we just need to have patience to get Brian back to a place where he feels "normal."  It may take a few months, maybe even up to a year, but he should hopefully start to feel better as time goes by.  She said our short-term goal is to try to get off the narcotics which I really want to happen as well.  I think the nausea he has is caused by the hydromorph Contin, but we also have to do that slowly, so she gave us a plan today which we will work towards.   I am hoping that once the gabapentin takes effect, that will then help Brian with his leg issues, and he may not need the narcotic medication anymore.  So patience is the key, but knowing that he is cancer-free, is a big plus as it definitely puts you in a better frame of mind!  

She is going to monitor Brian on a monthly basis for now to see how he manages with his peripheral neuropathy, and if he starts to do well, those visits to her will get further apart.  In the meantime, for the next two years, he will get his monthly injections of the pamidronate to keep his bones strong and he has to take acyclovir (antiviral) for a full two years as well, but that is okay, hopefully it keeps any pesky viruses at bay. 

So today was definitely a good day!  Now that the weather is better, and we can get outside more, I'm sure things will slowly improve for Brian.  I will continue to update how things go over the next little while!  Thanks to everyone for their thoughts and prayers....we are truly blessed!  

Monday, March 27, 2017

March 27, 2016 - update

Just a quick update as it has almost been a month since I last wrote.  Brian is definitely feeling better although the peripheral neuropathy in his legs is still an issue.  Our oncologist told us that we have to give it some time as it won't go away overnight.  It is frustrating for Brian though, as you know him, he wants things to get better immediately!  At least he is able to go for walks albeit "slow" walks, but I'm just grateful he can get out and actually go for walks now. They are just short walks but we plan to build on that as the warmer weather gets here and he has had more time to recover.   

Brian had his MRI over a week ago and last Tuesday he had his bone marrow biopsy and we go for all the results on April 10th.  Our oncologist told us, when we went for the bone biopsy, that she did have the preliminary report on the MRI and all was looking good, no lesions on his bones and no malignancies were seen, so that was very encouraging.  The big test will be the results of the bone marrow though, so we feel a little anxious about that but hopefully it is still showing a remission.  She told us that she wants to keep Brian off any chemo-type drugs for as long as she can so that his body has time to recover, but when it does relapse, then he will go on Revlimid which I understand to be a stabilizing drug which supposedly keeps his disease stabilized.  It will be an oral medication that he takes 3 weeks on, one week off.  

One exciting thing for all of us is that we now have something to look forward to, as we have planned a "family vacation" to Florida (Orlando area) in July.  We have booked a 5-bedroom house at a place called Windsor by Westside which is a new resort with a lazy river, a small water-park like area for the young children, plus a huge resort pool and the house we rented also has a small pool.  So the grandkids have lots to keep them busy and for us to enjoy being with the whole family.  Brian and I are going to drive down (with the dogs) and the rest of the family will be flying down.  We have always wanted to do a family vacation so we made it happen and not procrastinate about it.   Everything is booked now and we can now look forward to getting away.  

So that is my update for now, I will update again after our visit on April 10th.  

Tuesday, February 28, 2017

March 1, 2017 - Chemo is done!

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

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

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

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

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

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

Sunday, January 29, 2017

January 27, 2017

This has certainly become a journey of ups and down and the new year hasn't started off as we had hoped.  Brian went for chemo on Tuesday, only for it to be cancelled for a second week in a row.  His white count ANC (neutrophils) were only at 0.4, way too low to administer the chemo.   His back pain has been unrelenting and he has been trying to take his morphine on a more regular basis to try to keep it to a minimum.  Of course, the nights are worse, he just cannot get a good night's sleep, waking from sleep every 2-3 hours, only to need more pain medication.  The daytime pain is more tolerable, but Brian is sleeping a lot throughout the day as he feels so exhausted.   Friday was a big clinic day as Brian was scheduled for a CT in the morning, blood work after that and then we saw Dr. McCarron in the afternoon when all the "rushed" results would be back.  It was a long uncomfortable day for Brian having to be at the hospital for 5-6 hours, sitting is definitely not the best for his back.    So, the CT scan ended up showing severe degenerative disc disease in his lower back with compression of the lumbar vertebra 3 on the vertebra below.  There is some mild disc bulging and spurs, and narrowing of the spinal cord - spinal stenosis.  She says most of this is not cancer related, although the compression of L3 could be caused by the cancer, due to the weakening of the bones.  For the most part though, the degenerative disc disease is not caused by the cancer.  She recommended a referral to an orthopedic back surgeon who can assess him and may be able to operate where they put cement between the vertebra so they do not collapse on one another.  She said the name of this procedure, but I can't remember what it was now.  Once again, just too much information overload! She also gave Brian a more potent narcotic, Dilaudid (hydromorphine) to hopefully help a bit more with the pain, especially through the night.  He has taken it over the weekend and although Brian feels it does work better than the morphine, it still does not allow him to sleep through the night.   Dr. McCarron also recommended a referral to the pain clinic to help him manage the pain.  Breanne has some friends who recommended that we see a friend of theirs who is an anesthetist and specializes in pain and has a clinic in the Toronto area.  He told them that he would be willing to see Brian urgently, we just need to get our doctor to make the referral.  So we are going to pursue that option for sure.  

With respect to the blood work on Friday, his white count (ANC) was still very low and she said his marrow is having a hard time recovering from the chemotherapy; so she told me to give Brian an injection of Neupogen over the weekend, and on Tuesday we still go for chemo, but she is going to only give him the velcade and the dexamethasone, and eliminate the cyclophosophamide for the next two cycles.  She is going to see how that works with regard to his white count and then we are to see her again in two weeks for further decision-making before the next round starts.  These two weeks are to try to finish off the round we are on right now, but have had to miss two weeks due to his white count.  

We asked her about the reasoning for continuing chemotherapy and she said that the government sets out the guidelines for any particular chemo which is based on studies and what is best for the patient. She says the 8 to 9 rounds of CyBorD gives the longest remission after.  The longer it is given, the longer the remission rate is after it is finished. So if you stop mid-way, the remission is probably 4 months and if you go the full therapy, it gives you 6 months after stopping before recurrence.   Also, if you stop before the full course, it restricts the chemo that can be used for recurrence.  This is how we understood what she meant anyway. As I say, so much information, it does become overwhelming at times and we sometimes wonder if our interpretation of what we are told is correct! 

So that is where we stand for now.  Brian is not able to do much with this back pain, he can't even go for our daily walks with Timmie.  He is able to get about though and tries to be as active as he can without overdoing it, he does some light stretching to try to keep his muscles pliable.  In all, it is dragging him down, I can see it, although he does an amazing job of keeping positive and going one step at a time.  He ends up watching a lot of TV to try to pass the time and of course with all that is going on south of the border, that news is just depressing; we are just so tired of it all.  

We will forge ahead and hopefully soon we can get Brian's pain management under control! I think I heard the other day that it is only 7 Mondays until Spring!! 

Friday, January 20, 2017

Happy New Year - January 2017!

I have been a little remiss at keeping up my blog in the last few weeks.  It has been a busy time, and for the most part, I just haven't taken the time to sit down and write.  I hope all our blog followers had a wonderful Christmas with their families and friends and now look forward to a happy and healthy 2017.  We had a great Christmas with our family and enjoyed watching our grand-kids enjoy their presents!  We love the excitement of it all!
Here are a few pictures of our family together on Christmas.




Since the last time I wrote, chemo for Brian has gone pretty well for the most part.  We got through about 7 weeks of not missing any chemo and Brian's blood counts were all really good; his white count (ANC - neutrophils) was staying well within the normal range.  Brian was feeling relatively okay other than the usual side effects of nausea, tiredness, etc.  Then about a week before Christmas he started to develop lower back pain which seemed to wax and wane, but then right after New Year, the pain was becoming quite severe; so much so that he was having trouble sleeping or even being able to find a comfortable position to sit or lie down.  He could no longer go out for our daily walks with Timmie and was trying to rest it as we are hoping it was just muscular.  I ended up calling our oncologist about it and she brought Brian in for lumbar/sacrum x-rays and gave him some Tylenol No #3 to help with the pain.  Tylenol No 3 was of no help at all and the following week, she then prescribed Morphine which also didn't seem to touch the pain. Of course, the x-rays didn't show anything, but x-rays are not the best to show bone lesions and now Dr. McCarron has ordered a CT scan.   

We went for the usual Tuesday chemo this week (Jan 24), only to find that his neutrophils were really low again - enough so that they cancelled chemo for this week.  We were actually very happy to not have chemo, hoping it would give Brian a break and help him feel free of the nausea and maybe the back pain.  Dr. McCarron has scheduled a CT scan of his lumbar/sacrum area on Jan 27 (next Friday).   We have found this week that even without having chemo, Brian is suffering badly with the back pain, especially at night, can't find a comfortable position and keeps going out to lay on the couch which is about the only place where he can find some comfort at night.  The chemo nurse explained to us that he was not taking the Morphine correctly in that he needs to take the Morphine more regularly and not just wait until the pain is bad.  He has to nip it in the bud with the Morphine when the pain is 4-5/10 and not wait until it is 8-9/10.   So, Brian has been doing that this week, but still to no avail.  The pain is not too bad during the daytime, but night-time it is almost unbearable for him.  Anyway, not much we can do until we get further results of the CT scan (if that shows anything).  If it doesn't then I assume it is either nerve or muscle pain, but we have no idea what would have caused this.   We are a loss to explain it.  Breanne has been reading some multiple myeloma forums on the internet and other patients have said the same about bony pain in the back and it seemed that some patients said that once chemo was done, the bone pain abated as well.  So, we are also not sure if this pain is actually caused by the chemo. The chemo is attacking the bone marrow, so it does kind of make sense, but does this mean he will be suffering until May when chemo is scheduled to stop?  We just seem to have so many unanswered questions as no one seems to be able to give any explanations and testing for things takes time, meanwhile he suffers, as pain meds don't seem to be working!

Both Brian and I are feeling that Brian needs a break from chemo (he has been on chemo since August), but we will have to see what the doctor says as we are going to ask what ramifications there are if he elects to stop chemo now.   They have their regimens of what works best, so we have to make our decisions from that.  We would really like to end chemo and just start maintenance since Brian is supposedly already in remission, but we have to see if that is possible at this point. If this back pain is chemo-related, I just can't see Brian going through until May suffering like this.  Through this though, Brian has to be commended for still keeping such a positive attitude, he still has a smile on his face, and just keeps forging forward.  I'm not so sure I could be that way if our roles were reversed!  He always makes my care-giver role easy as he never complains.  I love him dearly for that! I just wish I could do more some days.  

I will update again once we have the results of the CT scan.  Meantime, we will carry on as normal and hopefully soon Brian can get over this back problem! 



Monday, December 5, 2016

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!!