Radiation Doses- What to Worry about and What to Shrug Off when we have CLL (chronic lymphocytic leukemia)

No amount of radiation is good for us. Ionizing radiation damages DNA and increases cancer risk. No question about it. 

So avoid x-rays unless they are truly needed. Even more so for CT scans, that are rarely indicated for CLL under most normal circumstances. 

We have reviewed our increased cancer risk in prior posts when we have multiple CT scans. And Wayne Wells has written this extensive review for the CLL Society on our website. Here is a link to an article I wrote titled "The Risk Of Secondary Cancer Associated With > 8 CT Scans In Patients With NHL (Non Hodgkins Lymphoma)" Remember CLL is a type of NHL.

But what about the risk from a minor dental films or an x-ray of an extremity?  When should we worry?

My dentist has been bugging me for years to have some x-rays, and I finally said yes after he provided me with this sheet that compares a dental x-ray to a CT scan to Chernobyl. 

It gets complicated, but the bottom line is that what this chart is basically tells us is that if the x-ray machines are properly calibrated, and are used properly, and are functioning normally, we don't need to sweat the small stuff when it comes to getting imaging. Also with dental films, miscalibration, should it occur is less likely to be a big deal than it is with CT scans.

This chart is from my dentist. Click on it to expand it. Lots of good information so it is worth the squinting. Apologies for the small text.

One tiny blue box equal 0.5 μSV and that is roughly equivalent to the radiation exposure from eating 1/2 a banana. Pretty low risk. The sugar is probably more dangerous.

The unit SV or Sievert is a measure of the health effects of exposure to low dose radiation. The sievert represents the equivalent biological effect of the deposit of a joule of radiation energy or 1 gray or Gy in a kilogram of human tissue. μSV is 1 millionth (micro SV) of a Sievert. 

A chest x-ray is equal to 1 green box or 20 μSV. In the chart, there are 400 blue boxes in every green box. Next there are 500 blue boxes for each one orange box that is equivalent to 10 mSv or ten 1/thousandth of an SV or ten milli-SV. For reference 1 mSv is the average accumulated background radiation dose to an individual for 1 year, exclusive of radon, in the United States. 1 mSv is the dose produced by exposure to 1 milligray (mG) of radiation. 5000 - 8000 mG is exposure dose that kills about half of us, known as the LD50 though the damage is dependent on many factors including duration of exposure.

100 orange boxes equals one yellow box of 1 SV.  Remember that 5-8 SV  is a likely fatal dose. Ten minutes exposure next to the Chernobyl core after meltdown resulted in 50 SV, 6-10 times the usual killing dose.

Life is full of risks, but a dental x-ray is not one to worry about.

Questionable Online Advice from a Physician about CLL (chronic lymphocytic leukemia): Yet Another Reason Why We Need the Best Information

OK, class. What is wrong with the advice this syndicated doctor is giving to his inquiring patient? Here is the link to one paper's column so you can read the whole question and response.  CLL is disease of the bone marrow April 2, 2015

"DEAR DR. ROACH: I have been diagnosed with chronic lymphocytic leukemia at stage I, and I am experiencing swelling in my lymph nodes under my arms and in my neck..... — N.H. ANSWER: Chronic lymphocytic leukemia is a disease of the bone marrow, an indolent (slow-growing) type of cancer. It is called CLL when the cancer cells are mostly in the blood, and small lymphocytic lymphoma (SLL) when it is primarily in the lymph nodes. These are just different manifestations of the same disease. However, if the disease is mostly in the lymph nodes, then radiation treatment usually is used, even in asymptomatic early disease. In stage I CLL, the condition typically is watched for progression." Actually Dr. Roach is mostly correct in his definitions. CLL and SLL are the same disease with different presentations. The cancer cells are essentially identical phenotypically and immunologically. The WHO say the cancers are identical. It is a nuanced difference, but I would argue that while CLL is usually found mostly in the blood and marrow, occasionally in patients such as myself with 11q deletion, we may have near normal lymphocyte counts and little bone marrow involvement, but may present or develop massive lymph nodes, so our CLL may be "primarily in the lymph nodes".  For us, our cancer is a leukemia that behaves more like a lymphoma.  In contrast, SLL presents in the nodes and when it spoils over into the blood with excessive lymphocytes (greater than 5,000 that are monoclonal) or the blood counts drops or the marrow is heavily involved, then it is becomes CLL.  Take a look at this link for more on diagnosis. This is a subtle point and Dr. Roach is for the most part correct as are nearly all the similar online definitions by such reputable sources as LRF, so I have no fight to pick on this point. His admonition to watch (and wait) with Stage 1 disease is also sound counsel. And the rest of his discussion that I didn't excerpt on herbal therapy was thoughtful and well considered. My real concern is the statement about SLL that radiation therapy "usually is used even in asymptomatic early disease". This simply isn't the case and would come as a big surprise to many SLL patients who have happily dodged any therapy for years. There can be an argument made in the rare patient who present with a single cancerous node or cluster of nodes in the same tight anatomical location that removing it or sterilizing it with radiation is potentially curative, but this patient already has nodes in two anatomical locations, so a curative treatment is less likely. In fairness to Dr. Roach, there was one small (14 patients in stage 1 or 2) retrospective study from 1989 that showed an impressive 80% progression free survival at 10 years in stage 1 disease with the authors recommending early radiation therapy.  The results were less impressive with Stage 2 disease (two locations on the same side of the diaphragm) and not significant with more advanced disease. Radiation therapy in the absence of symptoms is certainly not routine "standard of care", especially with the demonstration of more than one site involved. If considered, it certainly needs to be carefully reviewed with a CLL/SLL expert. Moreover I suspect that the role of radiation in SLL will be decreasing rapidly with the options of new targeted therapies now available that are so darn quick and effective in shrinking our nodes. I present this case as a cautionary tale of the danger of not being abreast of the latest research and guidelines whether you are the patient or you are the doctor. Understanding the details and nuances of our disease is critical for our survival. CLL/SLL is a relatively uncommon, but complex disease that is different in each and every one of us. We all need to be treated as individuals. And the treatment options are changing very fast. Many well meaning general oncologists may be badly out of date and we need to be ready to ask for a second opinion from a CLL expert.  We all need to be our own best advocates.  We all need to be informed. That is why I and other CLL patients, caregivers, and experts have been working so hard and long to put together the only active patient driven, doctor reviewed, CLL educational and supportive website based in the USA. The nonprofit 501(c)3 CLL Society Inc. website has just been launched to meet the unmet needs of the CLL community. We aim to be the hub for all helpful reliable and valid CLL information on the web either on our website itself or through selected links to other reputable sources. Here is our Mission and Vision statement: Mission: The CLL Society Inc. is a patient-centric, physician-curated nonprofit focused on patient education and patient support. Dedicated to addressing the unmet needs of the CLL and related blood cancer communities, it explains the rapidly changing therapeutic landscape and the importance of clinical trials, supports and builds patient networks, and educates providers and patients alike. Vision:  We act to help shape a smarter, brighter future for those with CLL and related B cell blood cancers by encouraging and supporting smart patients, smart providers, smart clinical trials, smart healthcare delivery systems, and smart therapies. We are careful not to replicate the fine work of many other organizations and patient forums, but looked to fill the  gaps with searchable information, with supportive articles, with interviews with experts, with news and the latest research from all the major meetings and journals, with carefully vetted links to our reliable sites, with many useful tools such as glossaries and spreadsheets for labs and updates on clinical trials and so much more. And we are only just beginning. With the continued support of the CLL community of patients, caregivers, providers, and industry, we have big plans to fill in gaps in our information and grow in response to what the community wants.  It will be a vibrant growing site. New material will be added regularly. Please consider signing up for alerts and the newsletter.  Email us with feedback. Your support and comments will guide our future development.  Let us know if you want to write for us and we will help with editing and fact checking. After all we are all in this together. You know who I am so I think you what you will find at http://cllsociety.org robust gritty explanations of what we need to know to win in our struggles. Complex topics unpacked and explained in accessible but not simplistic terms. I will share all the news and research, good and bad. No sugar coating.  My blog will continue, but may gradually morph back to being more about my personal ongoing CLL journey. For the foreseeable future, there will be some overlap with my blog and http://cllsociety.org but eventually the website for the nonprofit 501(c)3 CLL Society will be the main source of all the new information and my blog will be where I tell my story and share my candid opinions. Stay strong. Stay in touch We are all in this together.

More Good News- Update on My Lab, CT Scans, and General CLL (chronic lymphocytic leukemia) Status

My blog has veered far away from the simple telling of my story to more telling of our stories with much B roll.

I am making plans to maybe bifurcate its content in the future, but for now it will continue its happy and diverse life as a personal health blog, a home for research news and video and audio interviews with leading researchers, and a whole bunch of personal analysis and advocacy on what it all means.

I am back from Ohio State where I am still seeing the research team every 3 months and getting CT scans every six months for my clinical trial on ibrutinib. I have riffed on this being too much radiation before in this prior post that includes links to some of the basic research of radiation exposure and its risks, but Dr. Byrd argues that the few relapses he sees on ibrutinib show up first in the nodes, so he wants to monitor me with the scans.

True enough. When I relapsed post failed hematopoeitic stem cell transplant in 2008, the nodes were my canary in the coal mine showing slight growth months before my lymphocyte counts started to move up and my platelets down.

So twice a year CTs are still the plot line for my clinical trial at OSU.

Since diagnosed in 2005, I have probably had about two dozen CT scans!

Add to that the equivalent of the 20 chest X-rays annually I get from flying over 100,000 miles a year, and my risk of secondary cancer is significant. This link with a NASA produced video tells the air travel part of the story.

If you really want to worry, take a look at this article from Medscape on CT scans in NHL.

But this post is not about the danger of CT scans, but about what my last one showed and happily that was stable disease.

I still have enlarged lymph nodes but they have changed little since October of 2012, or for the last 20 of my total of 25 plus months on ibrutinib. My largest sentinel gut node near my liver was about 10 cm at its peak, 7.3 x 3.3 cm just before starting ibrutinib, 4.4 x 0.7 cm in October, 2012 after about 6 months on the medication, then it shrunk to its shortest 3.9 x 0.7 three months later and when last measured on June 30, 2014 was 4.4 x 0.4 which actually represents its lowest volume. It has been fluctuating and when you account for the difficulty of measuring mobile objects in the mesentery and near the liver, is mostly stable since its dramatic shrinking in the first 6 months of therapy. Its a long hot dog shaped node instead of the more common bean shape. The same early dramatic shrinking in the first six months and slight ups and downs since has been the tale for my other smaller sentinel nodes on the scans.

So I have pretty stable disease.

What does this mean to still have enlarged nodes and a touch of CLL in my blood (see this prior post from last April on my flow cytometry report to understand more about my numbers and disease burden)?

The CLL does not proliferate in our blood, so the disease in our nodes and bone marrow are the source of all our problems and I will ignore the blood for now.

There is good reason to believe that these enlarged nodes are still full of CLL, but that it is not proliferating, thanks to the signal blocking from ibrutinib preventing it from getting the messages from its nurse like cells and others to be fruitful and multiply. So chock full of CLL, but it's dormant.

The other more positive interpretation is that these enlarged nodes are just the scarred down skeletons of the cancerous nodes they once were, and there is no residual disease to be found. Unfortunately, I am skeptical of this more PolyAnna hypothesis, and short of a biopsy which is not going to happen, there is not way to know for sure.

So what to do to avoid waking the Kraken?

Hope my genomic instability as evidenced by my 17p and 11q deletions and my complex karyotype will continue to behave with the ibrutinib aboard and not mutate so that my magical bullet no longer covalently binds BTK and blocks its activity?

Knock down the residual disease by adding a second or even a third agent?

Be reactive or proactive?

That is the question du jour faced by many of us now and more in the future whose CLL is controlled but it is not gone now with the new medications such as ibrutinib and idelalisib.

I have probed this recurring and unanswered question in more detail a prior post, and will soon be updating my thoughts on how to avoid being left stranded on third base and not getting home to a cure.

The rest of my news is also good.

My blood counts are boring and despite dropping my cyclosporin to a token dose of only 25 mgs once a day and stretching my 40 grams of IVIG infusions to every 7-8 weeks, my ITP also remains dormant. I think the possible immune stabilizing activity of ibrutinib and my low disease burden may be the factors  that have given me this long ride with high normal platelet counts. I have not been anemic for many months now and my neutrophils and the rest of the CBC are all copasetic. My blood chemistries are in the normal range and only my very low immunoglobulins, namely IGA, IGM, and IGG give proof to that fact that I still have a B cell leukemia, albeit a very sleepy and well behaved one.

More personal clinical and general CLL news soon, nearly all of it good.

I will be posting some of my interviews from ASCO 2014, plus sharing some exciting advocacy news. Busy times.

ASH 2013: Dr. John Pagel Discusses Radio-Immune Therapy (RIT) in Chronic Lymphocytic Leukemia (CLL)

The big buzz at the ASH annual meetings for the last few years has rightly been targeted oral therapies such as ibrutinib and idelasib and other, but one therapy that in my opinion that has received short shrift is radio-immunotherapy or RIT.

In fact, it is so rarely used that since this video was recorded in December, 2013, Bexxar (Tositumomab) was pulled from the market in February, 2014 as it was prescribed fewer than 75 times in 2012.

Zevalin (Ibritumomab Tiuxetan) is still available.

At ASH 2013, I interviewed Dr. John Pagel out of the Seattle Cancer Care Alliance (the union of the Fred Hutchinson Cancer Research Center (the Hutch), UW Medicine, and Seattle Children's) who has a very patient friendly way of explaining how these drugs work and what their role might be. Dr. Pagel is also a kind and wise transplanter and as such has extensive experience with conditioning therapies that often include different forms and dosing of radiation to prepare for the transplant and that is another reason why I wanted to hear about his updated research on this important and neglected corner of CLL research. To understand how much or little we have moved forward in the last year, please check out my interview with Dr. Pagel done a year earlier at ASH 2012. As you can read, we are still dealing with the  some of the same old issues that are slowing our progress.

RIT makes most sense to me as a mop up  or "consolidation" therapy and as I have posted before, we desperately need that. I believe RIT should be explored as a final knockout punch to our CLL when it has been decimated and only a few active cells are hiding out in our marrow and our nodes.

I suspect that this research idea won't get much traction.

Dr. Pagel is too kind when he describes why these antibodies with their toxic payload are underutilized.

True they are expensive and tricky to administer, but they are usually a one or two time treatment. 

Sounds good to me. 

The real reason they are not used as much as they could be is that oncologists can not prescribe them. You need to consult a radiation oncologist and even then, the radiation oncologist you see may not offer that option or have much experience with RIT. It requires specialized set up for its administration and management. 

So basically it is a turf issue. 

Here is a link to the abstract that Dr. Pagel presented at ASH 2013.

And here is the interview. As I said as we talked, I love his analogies.

ASH 2012: Dr. David P Steensma: Myelodysplastic Syndrome with a Focus on Secondary MDS in CLL

Dr. David Steensma is a world leader in not only basic laboratory and clinical research on MDS, but also in examining the impact that anemia has on the life of older patients.

MDS or myelodysplastic syndrome is bone marrow failure and in a minority cases, turns into an acute leukemia.

It is not an uncommon complication of CLL, both, as Dr. Steensma explains, secondary to the genetic and epigenetic changes inherent in the disease itself, and to the treatments, especially the alkylating agents that damage the DNA. In CLL, these included chlorambucil (Leukeran), cyclophosphamide (Cytoxan or the C in FCR), and bendamustine (Treanda).

This is a strong argument for younger patients to avoid those drugs known to damage the bone marrow, but Dr. Steensma offers some more subtle analysis and advice.

We also discuss the radiation risk of MDS from all those CT scans we get in clinical trials.

A good friend of mine is now more than two years out post transplant at MDACC for his CLL/MDS combo one-two knockout punch and he is doing great with no molecular evidence of either disease (MRD negative). And very little graft versus disease.  You can read his story at this link.

This is my last video interview from ASH 2012, but ASCO is just around the corner with more news and interviews.

Dr. Steensma clarifies and explains the risk of MDS in simple terms.

Einstein is quoted as saying: "Make things as simple as possible, but not simpler."

Dr. Steensma does exactly that.