Doing Really Well

This is the time of year for friendship, family and just snuggling to keep warm. Henry and his old friend Pound (who has been visiting for over a month) are really into that spirit.

This is my update on how I am doing after over two months now on iBrutinib.  I am feeling really quite well. It's truly remarkable actually. My lymph nodes have shrunk to almost normal. I have rediscovered my neck! I have more energy and less fatigue or other symptoms associated with CLL.
There are side effects: headaches, dryness of mouth, nose, eyes and throat (alleviated by lots of fluids), some joint pain and bruising. None are debilitating and all are very tolerable, considering that the drug is a life saver. My blood work is gradually getting better. As I have posted earlier one of the "interesting" consequences of the drug's action is to cause the WBC  (white blood cells) and ALC (lymphocytes) to increase for the first few months. This is because as the malignant lymphocytes begin to die they are released from the nodes and gather until they are flushed out.

Recent research on this drug and other imunotherapy drugs (iBrutinib is not chemotherapy) are all changing the way specialists view treatment. In the USA where money is no object (unless like most people you have a mediocre or inferior insurance plan) specialists are of the view that traditional chemo (FCR or FR) should now only be used in less than 10% of the time.  These protocols have been used for over 20 years now. So why the change? Well FR and FCR (particularly the Fludarabine) can cause damage to the DNA making us more susceptible to secondary cancers or a more aggressive form of Leukemia. But it was the most effective (and only) form of treatment for many years.  Here's a discussion by a prominent American specialist on the future of treatment for CLL. 

In Canada FR is cost effective. iBrutinib is not generally available for front line (first) treatment unless there are special circumstances such as certain genetic mutations indicating a higher risk disease or where FLudarabine is considered inappropriate. In BC it is only funded for people (like me) whose disease is resistant to Fludarabine or for front line if there is a 17 p genetic mutation.  Here are the guidelines. So, lucky for me I failed treatment with FR after four cycles. It's not the first time in my life that a failure turned into a success but certainly the most significant.

That's my news for now. iBrutinib is doing great things and I feel like I am roaring around, making good lap times and not too worried about crashing. So until next time enjoy your holidays, Happy Hanukkah, Merry Christmas and may the light be with you.   Thanks for dropping by!

One month And Doing Well

I thought I would write an update on my experience with Ibrutinib so far.  Just to recap: after 4 cycles of Fludarabine and 3 of Rituximab it was determined that my disease was resistant to this standard form of chemo known as F.R.  I was placed on a new drug called Ibrutinib (trade name Imbruvica) which is a targeted type of therapy and not chemotherapy. It is a BTK inhibitor which "starves" the B cancer cells of the type of protein they need to survive and as a result they begin to die.

Here is a neat little video on how the drug works.

It is very expensive. A month's supply costs about $ 10,000.00! Fortunately in Canada, as a qualified candidate the cost is paid 100% by our medicare system. The criteria to qualify is being resistant to Fludarabine.

The $ 10,000 miracle bottle

On November 8th I met with one of my hematologists: Dr. Cam Griffiths. Upon an examination he determined that my lymph nodes had shrunk considerably, more than after the last treatment of FR. Furthermore my blood work was good. My platelets (the little guys that help with clotting) were almost normal again. My lymphocytes and white blood cell counts were elevated but this is to be expected during the first few months on Ibrutinib. There isn't really a definitive scientific explanation other than a guess that as the malignant lymphocytes start dying (the desired effect called apoptosis) they gather temporally before being flushed out of my body.  Over all I am feeling pretty good! The doctors have given me a green light to carry on with Ibrutinib and increased  dosage to 3 capsules a day, the standard protocol. I have some minor side effects mostly relating to dehydration. I have compensated by drinking a lot more! If I do not, I get headaches.  The most notable change is that I no longer look like I have the mumps. If you look at my first few pages in this blog you'll see what I am talking about.

Here I am today. A leaner and not so mean fighting machine.

On another note Monique and I are looking after some friends' lovely but very anxious, elderly whippet. Out whippet has been friends since they were puppies.  He has high anxiety so hopefully our Henry who is the master of relaxation can tune him in.

Here they are together chilling out. Henry is on the right.

So it looks like I now have a new and much faster "machine" to carry on with my race to conquer this disease. Fasten your seat belts and come along for the ride.  Until next time, thanks for stopping by!

Off to the races, again!

I thought I would post a brief update. I started on Ibrutinib today. So far no nasty side effects and all going well. I am on a slightly lower usage to start for about  a month and then if things continue going well it'll be increased.

I certainly have hope that this drug will be as amazing for me as almost everyone else who have taken it. So stay tuned as I give you my lap by lap report! Until then thanks for checking in.

A new Horizon

I spoke with one of my specialist on Tuesday. He ran my case by a team of four other hematologists at a lymphoma conference and with my regular treating hematologist Dr. Yee who is currently on sabbatical in Germany. Most of them were of the opinion to re-treat but with Ibrutinib.  One opted for a combination of Bendamustine and Rituximab  (BR).

BR would only be a six month course as opposed to an indefinite  daily dose of Ibrutinib. The risk of BR treatment is twofold. Bendamustine is an alkylating agent invented in East Germany as ancheap alternative to other chemo agents which were either too expensive or unavailable behind the Iron Curtain.   It can cause DNA damage, possibly resulting in secondary cancers. Secondly if it does not work it can cause the cancer to mutate into a more aggressive and treatment resistant form. In short, the risks outweigh the possible benefits.  Therefore, we decided that I would immediately start taking Ibrutinib.

There are many possible side effects and there are many things that interact with this drug.
Here is  a partial list:

Ibrutinib is a BTK inhibiter which basically starves the cancer cells from a protein they need to grow and therefore induces cell death (apoptosis).  It's considered a targeted therapy as opposed to chemotherapy. It has only been approved in Canada as of January 2017 and because it it is so expensive, only for people who have relapsed or are resistant to traditional chemo; people like me.  It has a track record or working 90% of the time. It's the latest greatest and I hope it works!

Beneath the surface of constantly studying  the biochemistry of the disease, and understanding the complexity of the drugs, lurks the ever present emotional stress of living with a life threatening and (as of yet) incurable  disease.  I am reminded of this reality every time I have blood work, discussions with doctors, explain to friends and family, and as I see the the signs of the disease progressing. To say that living with cancer is life changing is a great understatement.  Regret, sadness, anger and sometimes just resolve are emotions that come up frequently.  Overall I believe my lesson is to try and live life in the most meaningful way possible.  I am grateful for my partner, friends and family who have and continue to support me through this journey.  

Thanks for checking in and following along. Stay tuned as the "race" continues with me back in the saddle with even better and faster new "machinery."

Henry keeps me calm and reminds me to have a sunny outlook.

Bad news good news

Bad news good news

Sunset from Dallas Road.

You all have heard that old anecdote about what doctors may say: "I have bad news and good news."

Well on September 20th I met with a replacement haematologist who pretty much repeated that expression in content. 

My  latest blood work shows that my WBC (white blood cells) and ALC (lymphocytes) are now doubling again. Furthermore my platelets are also still below normal.  

The specialist started the conversation with "have you seen your CT scan results?"  Which of course I have not. Have you ever tried to get results sooner than or at the same time your dr. gets them? The hospitals generally treat you paternalistically (like an infant) and go out of their way to make it difficult and complicated to get them. But I digress. The dr. said "you have a mass of lymph nodes about 10 cm in diameter in your a abdomen!"

He went on to declare that the chemo, FR (see my previous posts for an explanation) has failed.  My disease is resistant to it. Some of you may recall I discussed that I had genetic testing (FISH) that based upon certain deletions of parts of the diseased cells  (11q) predicted that I would not respond well to traditional chemo. He based his opinion on the size of my lymph nodes and the blood work. Furthermore he determined that my marrow had been impacted by Fludarabine  (the F in FR) to the extend that I now had lower than normal platelets. This was either a reaction (side effect) or a new condition where the marrow is not able to produce enough. In any event he was of the view that it would be necessary to continue treatment but that it was "too dangerous to continue with FR."

I put those words in quotations because they are the magic words which trigger medicare's approval of a new really sexy and very expensive drug; Ibrutinib. The drug essentially starves the cancerous cells and they die. It has some serious but not common side effects and must be taken indefinitely. Yes forever or for as long as it works. There are other limited options. The most viable would be to try a few cycles of Bendamustine and Rituximab and see what happens. Bendamustine is another DNA disrupter invented in the 1960's in East Germany because it was very inexpensive.  Apart from the side effects (and there are many) there is a risk of "changing the biology" of the disease. In other words it can mutate to becoming resistant to any other forms of chemo. So I have a few weeks to think about it but I am pretty confident that I will go with Ibrutinb and hope that it works at least long enough until there is "something else."  Right now in Canada, that would only be a transplant. I have talked about how risky that is.  Here's some practical information about the day to day issues with Ibrutinib.

At least I would be "back in the race" and have a shiny new drug. I am seeing another specialist in October and then decisions will be made and treatment may continue.  I will update my blog at that point. So until then thanks for joining me!

Red Flagged Indefinitely

My platelets have dropped dangerously lower to between 75 and 80 and are not coming back for a while (the normal range is 150-400). Today the specialist called to inform me that he has decided to stop all chemo indefinitely.  He feels my white blood cells and lymphocytes have returned to normal but my red cells are not recovering.  The result is that in his opinion by body has "had enough" of this chemo regime and proceeding any further could cause damage.  It's the Fludarabine that is the culprit.


The specialist  requested a CT scan to get a snap shot of where my lymph nodes are at. You may recall I had significantly enlarged nodes prior to starting chemo. If they have shrunk sufficiently then chemo will remain halted and I will return to waiting and being watched or the dreaded "watchful waiting" as the doctors euphemistically call it. When the disease comes back (and we know it will on average between 2-5 years) I will get a newer drug whatever is in fashion. Today that would be Ibrutinib. If the lymphocytes are still too large, and "minimal residual disease" has not been achieved likely I would begin Ibrutinib shortly.  Imbrutinib as some of you may already know is a kinase inhibiter that in effect triggers apoptosis or cell death. The death of the leukemic cells. Here's some basic information.


So all in all I have had 4 out of 6 cycles of the the chemo regime of FR (Fludarabine and Retuximab). My white blood cell and lymphocyte counts  (which are the diseased cells) have shrunk. Is it a success? Not completely. Is the race over?  Not yet. But the disease has been dealt a significant blow and I can get on with my life for now.


I am sorry if some of you feel let down in that many of you (including me) were probably anticipating a dramatic win or chequered flag.  That has not happened. Not yet. But I had good lap times, and I was in a good position when the "race" was stopped. And remember any race especially where one's life is at stake is still thrilling!

I will update this blog with anything new and even when anything happens no matter how boring. I want to thank you all for riding along with me.

Until then hold your ears as I scream on by into the sunset!

Red Flagged

Heading back to the pits

My usual cycle for treatment has been every 28 days or so. The procedure is that I have a blood test done a day before the treatment.  The last two tests indicated that my platelets had dropped to around 85.  This is considered a low platelet count and it is a consequence of the chemotherapy: Rituximab in particular.  Platelets are those little guys or parts of the red blood cells that cause coagulation or clotting of blood. Because of a low platelet count I am at risk for excessive bleeding and bruising.  As a result I have been "red flagged":  my chemo has been stopped because it is too dangerous to continue until the platelet count returns to normal. The effects of the chemo are cumulative and this is to be expected. I am feeling quite a bit fatigued lately and I am sure it as a result of some of this.

On another note I am walking in this years "Light the Night" fundraiser for the Leukemia Lymphoma Society on September 15, 2017.

If you can help by making any donation please do so by going to this page.

As many of you may recall there was an eclipse last Monday. Here in Victoria it was 90% effective. So a bunch of us joined hundreds of others on top of Mount Tolmie to view it. Here are some pictures. Note the quality of the sunlight as it decreases from the beginning of the eclipse to the full 90% at 10AM. The last picture looks like dusk.

Here's a shot of leaf shadows on the ground at the 90% of the eclipse. Note the crescent effect of the sun in the shadows. 

Here's some interesting news. While eating frozen lemons will not cure cancer contrary to what you may have read on facebook, a new study indicates that mega doses of vitamin C may kill leukemic cells. I had not tried this although some people I know did with little effect on CLL.  Here's the link to the study.

So here I am still in the "pits" waiting for the green flag.  Stay tuned for more news and thanks for joining my race!

Round Four

Fighting cancer is a dirty business!

Power-washing our stairs (is also nasty)

I had my third round of Rituximab and started my fourth round of Fludaribine yesterday.
Just prior to the infusion I had a look at my latest blood work taken the day before.
It was amazing! My (WBC) white blood cell count and absolute lymphocyte count  (ABC) were almost within a percentage point of normal! I have not seen numbers like that in about 9 years.
Clearly my body is responding to the treatment by "cleaning up" those dirty or malignant cells.
There are some causalities though. My platelets, red blood cells and neutrophils are a little low.
That's to be expected and not dangerous. I have discussed this in last few posts.

I saw my specialist last week who conformed my progress and noticed that my spleen had returned to its normal size. A sober thought: CLL is incurable. I am expected to have a compete remission post FR which will last 2 - 5 years approximately. In other words the disease is expected to come back. When I was first diagnosed the only fall back position upon refractory (failed) chemo was a stem cell transplant: a highly risky procedure. Today Ibrutinib has been funded for secondary treatment of refractory CLL (I have discussed this drug in detail in previous posts.) Tomorrow who knows what other breakthrough treatments will be available. So don't be worried.  I'm not!

Yesterday I had a very weird but not uncommon reaction to the Rituximab. I got really chilled and weak. It was over 24 degrees outside yet I was freezing! There will be a new form of Rituximab available this fall in Canada which will be administered by a 7 minute injection instead of the two hour infusion. I wonder if there will be similar side effects. Here's an article about it.

We went down to the legislature yesterday to welcome in the new government. Some of the members of the cabinet are friends.   People were complaining how hot and stuffy it was. I had to leave as it was too crowned and I was too cold!  I did not get to see many I knew but saw the new Premier John Horgan greeting many folks on the front steps personally.  He has a very different style than the last Premier. It was a very exciting day though. By the evening my chills had diminished.  Here are some pics.

Here we are in the crowd

Here's the new premier meeting the public

So until my next blog entry thanks for joining my ride and hopefully I continue to have a safe and great journey! Be sure to fill in your email address below if you want to be notified of updates.

Sniffy The Rat

My Rat Connection.

Some of you might be saying "what's the deal with the rat connection?"  Well you may recall that part of my treatment is a monoclonal antibody called Rituximab which is derived from rat serum. After my last post I remembered that I do in fact have a connection to rats.

As a lawyer I once represented a famous one: Sniffy the Rat. I know what some of you may be thinking about lawyers representing rats. So stop it, right now!

Around 1990 an "artist" was planning to publicly execute a rat named Sniffy by dropping a large rock onto him whilst he was fixed to a canvas, thereby creating "art."

I was retained by an animal rights group to attempt to lay an anticipatory criminal charge against the artist to stop him from killing Sniffy.   For some reason I was met with a lot of resistance from the local Crown counsel in this process.

Here's some background:

I was not successful in convincing Crown counsel to lay a criminal charge as they did not take this situation seriously. However a great deal of publicity was generated. from this impending event.  So much so, that on the day of the proposed execution, a large crowded gathered chasing the artist , who was forced to take refuge in a hotel, thwarting the execution. Ultimately Sniffy was saved!

Here's a clip documenting the whole event.

So why am I telling you about this interesting piece of history? Well, could it be that I am not having any allergic or negative reaction to the Ritiximab (derived from rat serum) because that community remembers how I helped save one of their own?  Rats are clever, as we all know. Maybe it's just karma?  Either way I am very grateful to the rats for saving my life!

Round Three

Another few hours at the infusion room.

After 28 or so days of reprieve I was subjected to another double round of chemo on June 20th with my two friends: Flubaradine and Rituximab. It went well with the infusion of Rituximab and only took 2 hours this time but I find that the 100 mg of Benadryl along with the extra strength Tylenol are a bit much and leave me very groggy. Why all these extra drugs you might be wondering? Well the Rituximab  which is a monoclonal antibody  is made from a rat or mouse serum and many people have (understandably) an adverse allergic reaction to it. You see our bodies don't like serum from rodents entering them! Lucky for me,  to date it hasn't bothered me. I wonder why? Maybe because I have come in contact with so many rodents in all my years? Just kidding, of course.

On the same topic my pre-chemo blood work indicated that my WBC (white blood cell count) had fallen to an amazing 20.9 and my ALC ( absolute lymphocyte count)  to 17.91!  Those who know something about these markers might think: so what! The normal range for  WBC is 0-10 and ALC is 0-5.  However when I started treatment my ALC and WBC were just shy of 300 each!  So this is pretty incredible news.  As a refresher the disease exists in the B cells which are lymphocytes and generally in the white blood cells. The only negative is that my neutrophils and platelets are also falling. Neutrophils are responsible for defending against infections and platelets work to coagulate blood and prevent bruising. So if they drop much more I am to avoid babies, people with colds, routine dental cleaning and try not to injure myself. These are tall orders given how "normal people" live.

I have had a bit of fatigue and continued brain fog but otherwise I am doing OK. I'll try not to be paranoid about all those precautions and just keep on visualizing all those bad cells being popped off by the amazing drugs. So stop believing  all those posts on social media about how poisonous  chemo is and how it's all a conspiracy of big pharma. These drugs are ingenious and life savers!

So thanks for checking in again and I hope you keep following along the race of my life!

Taking a Break

Paddling off Yellow Point

Two weeks ago my lovely partner Monique and I went to our annual retreat at the magnificent Yellow Point lodge. It's beautiful, rustic and and very comfortable place. We have been going there twice a year for about 14 years now. So you get to see many of the same people and build close friendships with the regulars. At the same time we all get to witness each other aging and suffering through life's challenges: loss, death, sickness, children and retirement to name a few.

This was my first time at YPL in the middle of chemo treatment. At first I was a little apprehensive. "What will I say? Will people notice?" Everyone was very supportive and loving. In fact one of our regulars has MM (Multiple Myeloma) a more aggressive form of Leukemia and although he has been in remission for a year and a half now,  he will soon need treatment again. This put my little battle into perspective. MM is a very aggressive and nasty form of Lymphoid cancer.  Most treatments to date are not curative. Fortunately there are some amazing new treatments coming our way, even for MM.  One which is a cure, is called CAR T therapy.  It is the science of re-engineering our  killer T cells to do their job. That is the future of lymphoid cancer treatment and it was pioneered by amongst others Dr. Carl June.  

I spent most of my time at Yellow Point resting, sleeping, eating and enjoying great company and food. I am starting to really notice the effects of the chemo. My lymph nodes are shrinking dramatically. Previous to treatment my nodes were bulging under my chin, arm pits, neck etc. Now they are hardly noticeable. But I am feeling weaker and more easily fatigued. I am also suffering from a bit of "chemo brain" or brain fog.  What I have noticed is that there are days when things seem fuzzy and I difficulty thinking clearly. That's not good especially for someone like me who uses my brain a lot! I also wonder if the cumulative effects of the Flubaradine attacking my DNA or the Retuximab  triggering apoptosis (cell death) of my B cells are having all these symptoms and the positive results?  Probably both. It will be interesting to see what my next blood work will be like. Until then I have opted to stay off work indefinitely. Who needs the stress? I want to enjoy the Summer and spend time with family and friends.

Next week I will travel to Vancouver for the unveiling of my mother's memorial stone. She died at age 90 last July. The following week I am back on my next cycle of chemo. Stay tuned and in the meantime I am going to spread my wings!

Heron at Yellow Point

Pit Stop and refueling

It was time to  come into the BC Cancer agency for the next round of chemo. This time in addition to the Flubaradine I am getting infused  with a an additional fuel or agent  called Rituximab.  I have discussed this drug in  my previous blog entires. Because of possible allergic reactions it could be an 8 hour day or " slow drip " as they call it.

I had a check up and blood work done yesterday. My white blood count and lymphocytes have dropped by over 50%. Also my lymph nodes or tumours have shrunk considerably. So I am tolerating chemo and the results are promising.

Turned out that I tolerated the Retux without any incident or reaction so they sped up the drip and I was done in 6 hours.   Just feeling very groggy but zero side effects. 

Tomorrow my partner and I are off for a retreat to our favourite place Yellow Point Lodge.

Stay tuned for the next leg of the race as I will blogging as I go. 

First lap

So here I am several weeks after completing my first cycle or as I like to call it "lap" of treatment.
There weren't too many bumps, mishaps or crashes along the way. Fatigue is my biggest complaint.
I got used to CLL fatigue which is considered "normal" but I noticed a reoccurring deep kind which felt almost flu like. No fevers but night sweats, chills and a feeling like I wasn't capable of much. Now this wasn't constant just periodic after activities and compounded by any sleep loss. I have also lost almost 20 pounds over the last six months despite having a healthy appetite. Doctors aren't really interested in these "minor details."  They are mostly concerned with reactions like: high fevers, rashes, blisters and other unpleasant but drastic symptoms.

So I am needing more sleep, naps, and to pace myself in exercising and trying to eat more. (I can hear my grandmother's voice in me head "eat eat!") I also need to be careful not to expose myself to people with colds and viruses. You see the treatment reduces my white blood cell count over time which also weakens my defense mechanism to these culprits. It also reduces my platelets. These little guys help with blood clotting and reducing bruises. So I am supposed to avoid all "risky" or "dangerous" activities like: shaving with a razor blade and use of sharp knives. Since I shave my head and face and like to cook and ride bikes this will be a challenge.

I also work predominately as an arbitrator and a mediator these days. For those who who are unclear; an arbitrator decides disputes (much like a judge does) and a mediator works with the parties to help them communicate (negotiate) and ultimately resolve their disputes between themselves.  Sometimes the parties are in conflict over important issues like; will they be able to keep their home, kids or job. But often they are petty squabbles over small amounts of money or personality traits that irritate them.   I have to say at this juncture that there is nothing like fighting a life-threatening disease to put things into perspective.  I find that I am losing interest in listening to these stories. It's a little embarrassing because I have spend over 35 years helping people in crisis resolve their disputes or legal problems, first fighting for them as a trial lawyer and the last 10 years as an arbitrator or mediator, and I have always thought I was selfless in this endeavor.  Now I find that I need most of my energy to fight this disease and heal from the onslaught.

I wanted to address some comments that I hear from fellow CLL travelers and concerned well-meaning friends. Many say "why are you taking this treatment (FR)? It's old, stale, and well....just not sexy any more."  They are right. There are other treatments being used for front line (first treatment) in the US such as Ibrutinib a kinase inhibitor. Ibrutinib is a targeted therapy like Retuximab but its mechanism is very different in that it for all practical purposes starves the cancerous cells and then they die. Here's a helpful link. It's fairly new in that its track record is only about 5 years. It has issues. Firstly it must be taken daily forever as it is not a cure. Secondly its cost; over $ 100,000.00 per year. OK that should be enough of a problem right? In Canada we have a public medical system unlike the USA (don't get me started about that topic) and we all share the cost. So that's prohibitive alone. Thirdly there are many side affects that can be treated with other drugs but a small subset of  people are beginning to "fall off" that drug. I mean that it no longer works after a while for some people. The cost alone is a huge deterrent. Even in the USA where the private insurance companies control the system, many who are prescribed the drug can't afford it because they are only covered for a portion of the cost. My own specialist feels the big pharmaceutical companies are pushing the drug for obvious reasons.  Finally, and this is the big kicker, only FR or FCR in the USA has the possibility of a complete and full remission. Ibrutinib keeps the disease at bay. Stops it from growing, but so far there is no concrete and final evidence that this is an indefinite result. So far many of those on the drug have been cancer free for over 5 years! There is a lot of debate in the CLL community about the "best" and most tolerable treatment but so far no matter what treatment we get, there is still no cure for CLL no matter what treatment options are currently available. There is an excelent blog by Dr. Brian Koffman who is a CLL patient that all other treatments (FCR, transplants) failed who is doing really well on Ibrutinib. You can read more about his journey and follow him here.

Another detail which might be too much for some and not enough for fellow CLL'ers is genetic mutations. Prior to treatment a genetic test is given. It's called a FISH test. What the heck do fish have to do with your cancer you might ask? Well here's a very good explanation (be sure to scroll down the page). For those who like detail here it is.    My results indicated (I have had several) that because I have an 11q deletion which the literature indicates  is  a marker for a  likely "poor prognosis."  This means that the CLL is more aggressive and that standard chemotherapy (FR) is "likely" to be refractory. In plain language I am in a moderately high risk category and it is "expected" that a FR induced remission will not be long lasting. Now these are statistically produced prognosticators, meaning an educated guess. So no one really knows how long the remission will last. But as I stated in my first post there are great drugs (including Ibrutinib) which are currently approved in Canada for secondary treatment (if and when I fall out of remission). And newer drugs and treatments are in the lab, so to speak. So please don't worry! I'm not!

Right now the best thing I can do, is take it easy. So until next time I post, that's exactly what I plan on doing. Thanks for checking in and don't forget to fill in your email address in the form at the bottom of the page if you'd like to ride along!

The First Day

 It's the race of my life

In 2008 I was diagnosed with  CLL an incurable form of Leukemia (CLL defined) after a routine blood panel.

My first reaction was shock, disbelief and some self pity. Why me? What did I do wrong? I always ate properly, exercised and thought I did all the "right" things. For years I read everything I could get my hands on about the disease. I was told there was no cure, that I had maybe ten years but there were treatments.  Apparently there was one potential cure: a transplant. Wow!   I want that! So I was pre-screened and accepted into the Leukemia Bone Marrow Transplant Program at Vanvouver. First off I have to tell you it's a bit of a misnomer as they no longer do "bone marrow" transplants; but rather "stem cell" transplants. I could get very technical on you about this because believe me in a short while I had become very proficient in biochemistry. I am going to spare you from all that. Basically a stem cell transplant is where they give you someone's healthy killer T cells and they then act like magic cleaning mops and go around your body killing all the "bad cells."

I am going to digress here. Leukemia is a terrible but ingenious disease. It's terrible because it destroys your immune system sometimes rapidly (as in MLL, or ALL) but slowly in my case (CLL). The result is that the patient dies from opportunistic infections such as viruses, bacterial infections etc. much like AIDS or HIV. It's ingenious because there is a triple whammy: it's caused by a genetic mutation (deletions of parts of DNA).  The bad cells are immune to normal cell death (all our cells are all programed to die: called apoptosis). The bad cells reproduce like crazy and our normal defense mechanism: the killer T cells are retarded and don't know or recognize the "bad" cells to be killed.

OK I hope that's clear! Back to transplants. Someone's T cells are supposed to kill the bad cells. But here's the thing. There is a 40% chance that patients don't survive the procedure and a 60% chance of ending up with two new diseases: GHD or HGD. Graft host disease is where the new cells are so aggressive that they kill everything: cells, tissue, organs and eventually you. Host graft disease is where your own body rejects the new cells and creates a war where your immune system is severely compromised and, you guessed it, you will eventually lose. So a transplant was presented to me as my "best option" for a complete cure.  Not great right?

Fortunately I did not have to consider this for a long time. Meanwhile most of my friends and acquaintances were very helpful in suggesting a multitude of alternative therapies from frozen lemons, coffee enemas to THC. Most were ineffective although the THC helped with sleep, pain and nausea. I saw a great naturopath for years Walter Lemmo who helped me steer through the morass of alternate treatment options and integrate with regular treatments.  I am sure he helped me ward off treatment for all those years. In that delay newer and better drugs were developed but mostly for secondary treatment. You see, because of genetic testing, it is anticipated that treatment will not give me a permanent or long lasting remission. However the newer drugs are safer and better than transplants, although not a complete cure. Not yet.

After 8 or 9 years of what the medical world calls "watching and waiting,"  sadly my white blood cell and lymphocyte counts skyrocketed. My lymph nodes grew very large and I was getting sicker. So on April 20, 2017 my excellent specialist Dr. Adrian Yee of the BC Cancer Agency (BCCA) told me "it's time." I had been mentally preparing for this for years but the impact was still huge. Having chemo is an admission that a disease is so life-threatening that a drastic measure is needed to save your life. It's emotional and scary. Here's a link to a complete backgrounder to front line treatment in Canada.

The standard or "front-line" chemical treatment (chemotherapy) that's approved by medicare in Canada is known as FR. The F is for  Fludarabine a very powerful DNA disrupter that effectively induces widespread apoptosis (cell death). It is administered by pills for 5 days in a row 6 times with 28 day intervals. I started that. The R is Retuximab a monocolonal antibody which targets the diseased "B" cells by marking them for destruction by my own immune system and is administered intravenously once a month also for 6 cycles. More information can be found here: FR

So far I have tolerated the Fludarabine quite well except that I must drink 8 glasses of fluids a day or my kidneys are impacted. The first night I had a lot of kidney pain because I apparently had not consumed enough fluids. I hope not to make that mistake again!

So I am off on the adventure of my life and hope to include you in it as I progress.

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