Chasing The Cure.

Although my journey began back in 2006, I don't think it was till around 2008 that I began doing "more" research with regard to treatment options. Not that I had not already been scouring the Internet blindly looking at every possible thing out there with regard to stage four Non-Hodgkin Lymphoma.

I had been, but somewhat blindly and not knowing what exactly what it was I was looking for, or knowing how to "weed out" the good from the bad on the Internet. Let me tell you there is an answer to anything your looking for out there in cyber-land, and you'll find both pro's, con's and everything in between. Mind boggling actually.

But, back to 2008, this is when I was diagnosed for the third time, second with NHL, and now the possibility of a Stem Cell Transplant was being put in front of me. This is when a lot more questions were asked, and the desire for more information came about.

I was sometime around the end of September or beginning of October of that year that I was referred to Dr. Xenocostas at the Cancer Center of the London, Dr. Xenocostas is a Consultant of Hematology and was whom I was referred to. My initial consultation with him was very thorough  and I learned a lot. This was actually the first time I had an Oncologist put numbers and odds in front of me.

A whole new perspective had now come to light, these numbers and odds I think were my wake up call to start taking charge of becoming an informed patient. I don't know about others, but for me up until this point, I just went along with everything I was being told, and not knowing what was going on most of the time, took it as it came to me.

Now was the time for question, lots of questions. Also, I became part of several social media groups in order to sort out where to find the "good" information. I thought this would make my search for information easier. Well, let me tell you, there are also plenty of "good" sources of information out there. What I had to do was narrow it down to a select few that were trusted sites of those I spoke with on social media.

But back to Dr. Xenocostas and my pending Stem Cell Transplant and the "numbers" and "odds" associated with it. Dr. X. informed me that in my current state at the time I probably had about a 20-25 percent chance of achieving any type of long term remission. So, what would my odds be by proceeding with the Stem Cell Transplant? The answer came from him pretty quick, and that was, my odds with the Transplant at best would be a 50/50 chance at any type of long term remission, and that was the best he could give me.

After filling me in on the procedure and all the risks involved, I made the decision to proceed. There was very slim chance of a cure, however I was willing to do what it would take to get the longest remission period possible. The details of what happened next and the transplant itself are described in a previous post.

This is what I would probably call ground zero, or the beginning of my chase for a cure. I was not going to stop at just 50/50 odds, I wanted more, I want a cure! Since the transplant I've had two relapses, and not really sure I can call them relapses, as the Non Hodgkin's had transformed into a Hodgkin's! The first relapse was a stage one, confirmed by the surgical biopsy of a node on my neck. Turned out to be a stage one, Nodular Lymphocyte Predominate Hodgkin's. A year later relapsed again, however this time a stage three diagnosis. Nodular Lymphocyte Predominate Hodgkin's once again. A Surgical biopsy of the enlarged nodes in my chest, a bone marrow biopsy and as well a PET/CT to stage it were conducted.

During the initial conversation with my Oncologist she discussed with me a clinical trial I had previously asked about, and encouraged me to seek a second opinion in the U.S. where I could also try to get enrolled in that clinical trial. I did just that, I called the Karmanos Cancer Institute in Detroit Mi. where I set up an appointment for the second opinion, as well as for them to re examine my pathology samples.

A copy of my medical records were sent over to them, and as well I picked up my pathology slides to bring with me for them to look at. All of this was being paid for out of my own pocket, as OHIP does not cover for  out of country second opinions, and will not cover a clinical trial as it is deemed experimental. I had to pay for the consultation (second opinion and written report) and as well it was an additional fee to look at the pathology slides and written report.

Unfortunately I was not a candidate for the SGN-35 (Adcetris) trial due to already having CIPN, (chemo induced peripheral neuropathy) which can be a side effect of Adcetris.  I did learn a little more about my current diagnosis from this visit and the report, however the majority of what was in it, I already knew. That's all part of chasing the cure and looking for answers. I've had several Dr's look at my case and for the most part the answers are always the same.

Is there something more out there? Is there a cure to chase?

I, in my own opinion, I believe there is. What is it? and were is it? are the answers that need to be found. In the meantime I will continue my own research and also look at the recommendations of others.

Until then, it's Watch & Wait.

"and maybe a couple of gifts under the tree too"

All I want for Christmas is a cure for cancer. If only...., never mind Christmas, just a cure would be fine with me. This would also be #1 on my three wishes, wish list, should I ever get them. You can also count on this, when I check in at the gate with St. Peter, this will also be a wish I ask to be granted  as well.

Looking at cancer related stuff most every day, I see article after article that talks about how we have made great strides with this disease of cancer. How we have now improved treatment protocols to such, cancer patients are living longer, and longer. Great news! fantastic, I am all for that, however, having said that, I would also like to point out that we are not hearing anything positive as to the "cause" of cancers.

Unfortunately the incidents of someone getting cancer are on the rise, significantly! It is now the number one cause of death in every province in Canada, beating out heart disease. Therefore there is a dire need to get to the causes and stop it at the source.

Yes there has been proven research that definitely pinpoints the cause in some instances, but I guess what I am trying to get at is, we need more research dollars put towards finding the cause. We've gotten pretty good at finding drugs and research into having people living with cancer doing just that, living with cancer.

I think it was probably sometime around my second or third relapse that one of my doctors told me the following; "we can now treat lymphomas as a chronic condition, just like controlling diabetes, we can control the lymphoma". In most cases today, that is a fairly true statement. Eventually, just like in some severe cases of diabetes, you may run out of options unfortunately.

This is where I in my own opinion believe we need to divert some of the money and funding going into research for a cure, and refocus on finding the specific causes. After all, you can't cure something you don't know the cause of right? I know this will cause some debate, but if not the cancer getting you eventually, even after dozens of years of remission, then a side effect of treatments, such as cardiovascular issues, kidney and liver related issues may get you.

Again, just my own personal opinion related to articles and papers I've read on these things. My own personal worry is heart issues. There are some new studies out that have me even more concerned about that now. Seems for a stage one relapse, radiation was the front line treatment in a lot of cases, and mine, and was the norm. Well, new studies are indicating that chemotherapy might be the better route as radiation related cardiac issues are coming to light now.

You could also say that about chemotherapy too in some cases, let's face it R-CHOP and ABVD both contain "the red devil" Adriamycin, and they don't do a Muga Scan of the heart to measure the thickness of your left ventricle for nothing now do they.

So back to the point of this blog today, let's start throwing some funding back at finding the cause, then we don't even need to worry about any of the above.

So, What I want for Christmas is a Cure for Cancer, if only.... and maybe a couple of gifts under the tree too!

Me with my  cake courtesy of AutoMaxx

Moving on, this week I found myself celebrating the 3rd anniversary of my Bone Marrow/Stem Cell Transplant, and also my 53rd birthday. Brenda and I found ourselves at the WFCU Center in Windsor to see the Windsor Spitfires take on the Brampton Bulls in OHL action. You see, my son, Travis, won 14 tickets in a luxury suite to enjoy the game from, compliments of AutoMaxx Pre-Owned Super Center. Not only did we get to see the game but we enjoyed food and beverage and to our surprise a Birthday cake sent by AutoMaxx owners Chis and Doris Taylor, great people, so if your in the market for a Pre-Owned vehicle then you need to look no further than AutoMaxx Pre-Owned Super Center.

My brother Jamie,Me and Brenda
enjoying the game from the suite!

Our Grand Kids Andre, Emily
and their Aunt Erin.

It was indeed a good evening all around including a win by our beloved Spitfires they beat the Bulls 2-1 and celebrating with family as well! Our grandchildren, Emily and Andre also enjoyed their very first professional hockey game too! As well my brother was there to celebrate with us as well. Travis also got to treat some of his friends to a "suite" experience for a game.

Travis and his friends enjoying the view from the suite.

Pre game warm up

*1- All I Want for Christmas is a Cure for Cancer badge, courtesy of : http://www.gotcancer.org/

Stick it to Cancer!

I start this by saying that I feel like I'm going through withdrawals. I have not had any doctor or oncologist appointments in a while now, and I don't see either oncologist until the new year. This has probably been the longest period I will go without seeing one doctor or the other.

I still have my appointments with my social worker at the cancer center, and also appointments with my dietitian there as well, so I'm not totally without being at the center for one thing or another. I have to say that I've gotten attached to the place. A place you never really want to see or be in, however after spending so much time there you get attached to the people there. Such a fantastic group there, I don't know how they do it, always so bright, cheerful and always with a smile.

The Montreal Stars Vs. The Toronto Furies

Brenda working the T-shirt table This past 

Me manning the T-shirt table.

This past weekend Brenda and I had the opportunity to volunteer for The Breast Ride Ever Stick it to Cancer Canadian Women's Hockey League event benefiting the Cancer Center, and seen some of those smiling faces there. We  both enjoyed working that event and look forward to it again next year.

Dec 08/08

As I continue writing this today, December 1 2011, I am reflecting on where I was in my journey just three years ago today. Today back in 2008 it was day 0 of my stem cell / bone marrow transplant, a procedure which took all of forty five minutes to re-infuse me with my own cells/marrow and seemed such a simple process for all the hoopla about it. Oh how naive I was back then to think it was so simple. Within a couple days of the re-infusion, when my immune system was all but gone, the sore throat, mouth sores, severe diarrhea and just the over all pain, began taking over my body.

Not so simple at all I found out, and in very short order! As I reflect today, I went back in the history of my Facebook notes and re-read from that time period. There was a gap between December 5 and December 10th with no entries. No entries because it's a period in time that to this day is very foggy in my memory. The only real recollection other than being hooked up to a morphine pain pump and one of the days having several doctors in my room due to having an almost zero blood pressure I don't recall much else.

50th Ice Cream Cake!

Somewhere in there was my 50th birthday, for which I have photo's Brenda took, and I look back on to actually see how "out of it" I really was. I also recall the ice cream cake Brenda and her mom brought me, thinking as I did, that it would be soothing on the sore throat. Wrong! I had maybe one and a half pieces. The nurses on the floor got the majority of that cake!

Cranking up the Floyd on the Mp3!

The Mp3 player Brenda had gotten me was an added bonus to being "out of it" , she loaded it with nothing but Pink Floyd tunes. How perfect, being a huge Pink Floyd fan, and this is why I am even more a fan today, if that is possible. That music got me through some of the toughest days of my life.

The next few years have still been an up an down battle, being careful to keep away from sick people and not get sick myself. A new diagnosis of Nodular Lymphocyte Predominate Hodgkin's since then in January of 2010, then a relapse confirmed again in January 2011.

It will be a year on December 17th since my oncologist called with the news of the enlarged nodes in my mediastinal region and I've been on watch and wait since. My latest scans still showed very minimal growth, however, I'm far from being comfortable with that. After all, it's cancer and it's growing within me. How long is long enough to watch and wait? How far do you let it go? I've been told that as long as it's not interfering with anything internally and not causing any pain or problems then there is no need to worry.

Well, watch and "worry" is how I refer to it these days, because that is exactly what I do, worry.  I worry about, what happens if I wait to long to start treatment? What happens if I do treatment now, use up one of my last few options and I relapse again? Will I relapse again? Am I being paranoid by looking at other options?

There seems to be many "off label" options out there, that may, or may not, be right at taking out this beast, but then again are they right for me? They are, after all, outside of the box options that may work for some, but not others. My journey with this disease has been anything but "normal", and therefore makes me leery of everything. Like treatment now, treatment later, clinical trial...etc.

I recall thinking at 48 when I was diagnosed the very first time, as well as the next two diagnosis after that, that I just wanted to make it to 50! Having had three cancer diagnosis all within a year, odds did not seem that good I would. Goes to show you what numbers and odds mean in the bigger picture of things, NOTHING!

The holidays are fast approaching, the Bachmeier,(Brenda's mom's side of the family) Annual Christmas get together is this Sunday, my 53rd Birthday is in a week, which by the way I'll be spending in a Luxury suite at the WFCU Center for a Spitfires game, my son won a luxury suite for the game from Automaxx Pre-Owned Super Store, and then Christmas and New Years.  So,I'll put it all aside all the "watch & worry" for now, enjoy the get together this Sunday, my Birthday, Christmas, New Years and the time with family and friends the holidays bring, and pick up the watch & worry again some time in the new year. My next oncologist appointments are in January and February, so I'll discuss these issues with them then.

I'll post another update after my Birthday to keep you all abreast of all that's going on this coming week, until then.

Tim, xxx