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!