Does anyone with CLL or cancer, part of "Downw... - CLL Support

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Does anyone with CLL or cancer, part of "Downwinder" radiation exposure from 1950s.

Big_Dee profile image
11 Replies

I lived in southern Utah in 1953-1954 during nuclear bomb testing by US government north of Las Vegas NV. All my family who lived with me are now deceased from cancer. US government has assistance program for those who developed cancer, but for some unknown reason exclude CLL. Maybe because there are so many of us?

11 Replies
AussieNeil profile image
AussieNeilAdministrator

Until the relatively recent assessment of people exposed to high doses of radiation from the Chernobyl nuclear power generator accident, it was thought that exposure to radioactivity was not a causative factor for the development of CLL. So I don't think there were high numbers involved...

DanaNicholson profile image
DanaNicholson in reply to AussieNeil

Hi Aussie, I was sailing to Australia in 1981 ish, past Howe island where the French were testing nukes. Unfortunately I saw the top of a mushroom cloud and the light reflecting off the cirrus clouds above. It didn't occur to me to look at the chart to see how far off the island we were, because the guy I was sailing with who had been below sleeping said it couldn't be. But for years I kept the date and time memorized, meaning to find out from the French if there had been a test that night. Would I have been exposed to significant radiation at the distance of 100-200 miles? It would have been a one time exposure, not like Big Dee living near testing, and not like my friend who lived in the lee of the Chernobyl fall out.

Big Dee, I read that radiation IS the main source of CLL. Just read it on a website bout 3 days ago. Will try to find..

AussieNeil profile image
AussieNeilAdministrator in reply to DanaNicholson

There are two potential radiation sources from atomic bomb testing:

1) The gamma ray burst from the explosion. (Below the horizon at your distance and hence not relevant).

2) Fallout from the test. Exposure would depend on the prevailing wind direction and speed. Radioactive strontium and barium are chemically similar to calcium and can get incorporated into our bones, where long term radiation into our bone marrow from radioactive decay of these fallout elements could be a causative factor. As has been mentioned elsewhere, there were more cases of CLL seen from Chernobyl, indicating a possible link, but those people were exposed to much higher levels of radiation than the general population.

Could I ask you to please include references at the time you make assertions? Thanks!

Neil

Big_Dee profile image
Big_Dee in reply to AussieNeil

Hello Neil

I my case my family actually lived in Utah desert, northeast of St George, Utah. The USA bomb testing was actually done when the prevailing winds were northeast of Nevada bomb test site so not to contaminate the people who lived south of test site in Las Vegas. They kind of neglected to tell anyone for years. I never saw anyone in desert area and my family were probably only people who lived there within 100 mile radius. My mother, brother and stepfather all died of lung, hip and intestinal cancer. I am only one of family with CLL that I know of.

AussieNeil profile image
AussieNeilAdministrator in reply to Big_Dee

The UK performed atomic bomb testing in Australia and as a result of varying wind conditions, the only part of Australia not dusted with radioactive fallout was the southwest tip of Western Australia. All nuclear powers were conducting atmospheric atomic bomb testing mid last century; France was just slow getting the message.

We need to appreciate that radiation is NATURAL. Cosmic rays sleet through our bodies all the time. The sun is a giant nuclear fusion reactor, with radiation causing the Auroras. Naurally occurring elements are radioactive. Bananas contain radioactive potassium. Background radiation is thought to stimulate the immune system - a positive effect. But all things in moderation...

Neil

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Here is a good discussion on Chernobyl workers.. the links are also of value

ucsf.edu/news/2012/11/13087...

CLL is a very rare cancer in fact...

Another Study..

ncbi.nlm.nih.gov/pmc/articl...

~chris

I find the Chernobyl study fascinating as I was diagnosed with both thyroid cancer (papillary) and CLL on the same day. Thyroid cancer is caused by exposure to radiation. Both cancers could have been caused by the same event/source...

SeymourB profile image
SeymourB

BigDee -

The Veterans Administration continues to exclude ionizing radiation as a cause for CLL, but lists other cancers:

publichealth.va.gov/docs/ra...

I've gone through several studies referenced by Cllcanada here and elsewhere, done my own research on PubMed, and discussed it a lot with my brother in Japan who is working on radiation monitoring for Fukushima. The one thing I keep coming back to is how much all studies rely on cause of death statistics from Hiroshima and Nagasaki survivors:

ncbi.nlm.nih.gov/pmc/articl...

The above review noted:

"Particularly problematic are studies that rely on the use of cause of death information obtained from the death certificate as a proxy for information on CLL incidence. Cause of death information provides a relatively good measure of disease incidence if the disease progresses rapidly and has a high probability of leading to death. These are not the characteristics of CLL. Patients diagnosed with CLL often live many years without developing evidence of significant symptoms, and as a consequence of the typically old age at onset of CLL, many patients die with the disease, but from causes other than CLL."

...

"Secondary cancers frequently follow CLL incidence, and there is the possibility that the malignant clone of CLL can increase in malignancy due to additional chromosome breaks (dedifferentiation) and develop into a highly malignant B-cell NHL. Again, with high probability, the secondary cancer would be documented as the cause of death. This observation is supported by evidence from a recent study of patients with CLL in which Kyasa et al. (2004) found that the second malignancy was the primary cause of death recorded for 34% of CLL patient deaths."

It referenced:

ncbi.nlm.nih.gov/pubmed/151...

But the VA has not yet been moved by these arguments. In my opinion, large bureaucracies are often motivated by political, legal, and practical considerations unrelated to science.

Meanwhile, most of us have not been exposed to such radiation, and yet we still have CLL. We have no idea of the cause beyond the statistical random mutations that affect everyone in the world, plus some genetics perhaps. Based on my 23andMe V3 chip results, I've seen my CLL risk increase slightly as new studies investigating it are published. But so far, to my knowledge, only Job in the Bible successfully sued God, and won.

The frustration at a lack of cause left me resentful for quite awhile. I've tried to move on, but I do keep an eye on this from time to time, especially because I am a USCG veteran who worked a little with LORAN in training, and with cesium based time standards at the USCG electronics calibration lab. In both cases, there was ample shielding, which was occaisionally defeated. I have friends and acquaintances who were much more intimate with both, a few of whom are still pressing their claims with the VA. But VA standards are nearly whimsical in what they allow and deny.

Big_Dee profile image
Big_Dee

Thank you for the information. My family actually lived in the desert during nuclear testing. My whole family has died from cancers other than CLL. I am last one alive and have CLL of which my W&W will be months not years. There are no other members of either my maternal or paternal family that have ever had cancer.

Hoffy profile image
Hoffy

See:

curetoday.com/articles/cher...

Says they are starting to see CLL. I think CLL Society sent this out on a tweet.

I was in western Europe in the summer 1986 during the Chernobyl disaster.

I talked to Dr. Kipps about this subject. In Japan that did not see CLL after the atomic bombs but Dr. Kipps point our the CLL is very rare in Asia.

If you combine the right genetics like someone from Norway in the sun a lot and you can get skin cancer.

I am > 50% 17P deleted and trisomy on diagonsis. Maybe Chernobyl.

Be well,

Hoffy

in reply to Hoffy

I was living in Singapore in 1986. Chernobyl contaminated food products were being supposedly dumped in South East Asia. So the Singapore government had their customs agents turning back suspect imports.

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