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.
Hi! I am a friend of your cousin Keith, here in the "other" Vancouver. I have leukocytosis, with pending flow cytometry results, but suspected CLL, and likely to enter a watchful waiting period.
ReplyDeleteThere is a commentary on a May 2015 paper in Blood (The American Society of Hematology) entitled "Chronic Lymphocytic Leukemia and the Warburg Effect". Basically, the paper indicates that CLL also abides by the "Warburg effect", meaning that the malignant cells preferentially use glucose as their energetic substrate, and that future therapies might target the cellular mechanisms which enable this glycolytic pathway.
One statement from this commentary: "Furthermore, this inhibition (of glycolytic enzymes) conveyed a synergistic effect on fludarabine-induced cell death on CLL cells under stromal contact."
Since there are no approved drugs to do this, at this time, I have considered employing a zero-carb diet as a crude substitute, to deprive the cancerous cells, to some unknown degree, of glucose. This strategy might not be effective when the disease is in its early stages, because there might be plenty of serum glucose around for the few cancerous cells, but in later stages, with bulky disease, a zero carb diet could conceivably have some positive effect (of unknown magnitude).
Anyway, these are my thoughts. The commentary is by a Carol Moreno. You might look it up.
Best wishes in your travails!
Bill
Hi Bill: I read the article. It is an older study. There has been a lot of discussion on this topic over the years. It usually goes something like this "cancer cannot survive without sugar." While excess ingestion of sugar cannot be healthy there is no scientific evidence to date of any connection or proof of this theory. Here's an interesting article on this: https://www.oncologynutrition.org/erfc/healthy-nutrition-now/sugar-and-cancer/ There is more evidence that inflammation is not helpful. So excess carbs or even sugar can promote inflammation and this would be a good reason to change your diet. In any event I am sorry to welcome you to the CLL "club." The good news is that there is a wealth of information out there now and many more treatment options than 10 years ago. A good place to start would be here: http://cllsociety.org/ And here: http://bkoffman.blogspot.in/ Feel free to reach out to me any time by email, blog or phone if you require any further information or help. Best wishes.
DeleteAnother great source to find information and ask questions is https://healthunlocked.com/cllsupport
DeleteHi again,
DeleteThanks for the links. I have bookmarked those. I'm not as well-read as you regarding the glucose data, but the Warburg effect is certainly well-established, being the basis for PET scanning. Of course, there is no scientifically-proven evidence *whatsoever* in regards to dietary restriction of sugars and carbohydrates as having a direct effect on any malignancy, as far as I am aware, but the idea remains attractive as a behavior which, theoretically, might have an incremental effect. The body and metabolism is very complex, and only a randomized exam might be able to dissect out the truth. Designing such an exam would be difficult, however.
I suppose that you've already seen the encouraging results regarding a CAR-T phase 1/2 trial and CLL at Fred Hutchinson in Seattle: www.fredhutch.org/en/news/releases/2017/07/car-t-cell-therapy-for-leukemia-leads-to-remissions-in-clinical-trial.html ?
My wife is interested in the symptoms you experienced during the watchful waiting phase of your disease. I know that you alluded to fatigue. Was it progressive over the years? Did you have any strategy against it?
Thanks for all that you do!
Regards
Bill
Hi Bill:
DeleteI am aware of the CAR T therapy. It is clearly still experimental and does not have widespread success and has a fair degree of morbidity and toxicity. If you read the article carefully it is about a clinical trial for people with CLL who have failed all other standard treatments. Therefore it is not available for most people with CLL yet. For most of us it would be FR or FCR in the USA followed by Ibritinib ot Ibrutinib in the US (possibly) first.
As for what to expect: gradually increasing fatigue, fevers, chills, night sweats, enlarged and bulky lymph nodes and susceptibility to colds, flus and infections. I think I have documented this? Although a Canadian site this is excellent: http://cllcanada.ca/2010/index.htm
This is now dated but an excellent start, detailed and in plain language: http://updates.clltopics.org/
Unfortunately Dr. Hamblin died from his disease but his excellent blog is still maintained:
http://mutated-unmuated.blogspot.in/
Once you do some preliminary reading you will be in a position if diagnosed to ask all the right questions from your expert. Make sure your specialist is not simply an oncologist but either a hematologist familiar with CLL. It's highly complex and most oncologists deal with tumour based cancers. I hope you do well.
Bill:
DeleteI forgot to answer your question as to how to cope? I had about 9 years to deal with it. I changed my diet (as you are going to do), took lots of supplements, saw a naturopath, gradually reduced my work load and avoided high risk situations (exposure to babies who can be germ factories), wore gloves, washed frequently, carried hand sanitizers, kept vaccines up to date (pneumonia, flu, meningitis, and tetanus). I read a lot and knew as much as my specialist and more than my GP. These are just a few things. Once you join a support group in person, on line or subscribe to a list serve you won't feel alone or uninformed. Also feel thankful that a lot has changed in the last 10 years and a cure may soon come by the time you need treatment.