It's Spring!

Spring has come to the West coast and with it: new blossoms, plants and warmer weather.
It's been a tough winter for most people, although here on the island it was mostly mild and not very wet. It's always my favourite time of year as it is symbolic of the hope of renewal.

On Thursday March 27th  I saw my treating specialist Dr. Yee who had been away since July. Although I had been seeing other doctors regularly it is  Dr. Yee who has been seeing me for almost 8 years now, is most knowledgeable and whom I have total trust in.  On the positive side he said that I am doing really well. My response to iBrutinib is great. My lymphocytes and white blood cell counts are almost normal and my platelets are in triple digit territory which is great. One of the things I really respect about Dr. Yee is that he does not sugar coat anything.  So unfortunately, he confirmed  my suspicion:  iBrutinb will likely stop being effective at some point. This means that the disease will mutate to become resistant to the drug and continue to progress. The history of this drug is only about 10 years or less and there is a subsection of people who have "fallen off" it.  CLL is a very difficult disease to treat because it is relatively slow growing and has time to evolve and resist most known treatments. Just as a reminder here is a great definition of CLL.

It's important to put this into context. There was a recent study which concluded that there was  a tremendous response rate (89%) with patients on iBrutinib for over 5 years.  But, as I have learned, given my genetic testing (FISH) results which puts me into a higher risk subset, and that my CLL was resistant to traditional chemo (FR),  it's good to be prepared for the day when iBrutinib stops working.  So what's next?  Currently there is only one other drug option avaialble to me in BC.  It's called Venetoclax. Basically it inhibits the cancer cells from ingesting a protein and thereby inducing cell-death. Similar to iBrutinib but a different and more aggressive mechanism. Here's more information. It's only available in BC on "compassionate grounds." This means if all other treatments fail. It usually only works for about 2 years.

My ultimate options are not for the feint of heart. The first one is a stem cell transplant. I  was  accepted as a candidate for this years ago, but age is a factor. As I get older the procedure becomes too dangerous. There is really only a 4 - 5 year window. The risks are very great. A 30-40% chance of mortality just from the procedure. In other words a third to almost half die in the process. And if I survive there is about a 60% chance of HGD (host graft disease) or of GHD (graft host disease.)  In plain language either my body rejects the cells or the new cells kill me, one organ at a time. Here's a really simple explanation. I would be a candidate for an ALLO (another person's ) stem cells. It's a very tough choice because if I survive I might be worse off than before or if it's successful it could potentially be close to a cure.

The final and most experimental option could be CAR-T therapy. You may have read about this latest innovation in medicine. It's part science and part voodoo. The theory is that my killer T cells (which currently are not working properly) are removed from my body. Then they are exposed to a virus and trained to be more active. Once they learn they are multiplied in a lab and then reintroduced into my body to kill the cancerous cells. Here is a great comic book-like explanation of the process. There has not been great success for CLL and in fact quite a few have died from the treatment. Plus the cost is prohibitive: about $ 500,000.00 US. Currently it is only being done in the USA however the Vancouver Hospital Bone Marrow Transplant Unit will be starting a program very soon. Dr. Brian Koffman who started the CLL Society and who is also a patient, had FCR (chemo), a stem cell transplant, and iBrutinib for 6 years all of which failed, is now undergoing a pioneering trial of CAR-T in Seattle. He has been a long time support leader and blogger. Currently he is blogging about this treatment and you can follow his incredible journey here. Let's hope he does well. One day I may have to follow in his footsteps!

Hopefully iBrutinib will keep on working for me and I won't have to make any of these decisions for a while.

So there's a lot to think about and a lot to celebrate at the same time.  So it's important to remember that I am feeling really great!  My health has improved to a level I have not seen in many years. But, as usual it's a real mixed bag. Glad to be doing well. But at the same time fully aware that it's borrowed time. Over all, happy to be alive and feel the warmth of the Spring air.

Remember to stop and smell the blossoms!

It looks  like their might be more challenges ahead. I know it's been a bumpy ride hasn't it?    But it's sure not dull!   Until the next time, thanks for ridding along and for all your support. Don't forget to get updates by filling in your email address at the bottom of the page.

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!