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