Wife just diagnosed with CLL too!

[Walt424]

I was diagnosed in 2006 and have been in clinical trial since 2016. My wife was just diagnosed. All sorts of questions: could it be an environmental exposure we shared at some point (married over 49 years)? Some sort of virus that predisposed us? Coincidence? Should our grown children worry? Other questions we should be thinking about?

[Hevs333]

Wow... don't know what to say it does make you question things, I had always been under the impression it was not environmental thing. Such sad news for you both sending hugs. The only thing that can be said is you will have the understanding and knowledge to fight it together. Good luck for the future for you both. Keep us all posted as to what you may discover

[june65]

Hi. If you look at my previous posts you will see that my husband and I both have CLL. He was diagnosed about 14years ago and I was diagnosed about 6 years ago. When I was diagnosed our haematologist said it wasn’t rare ( CLL specialist thought it was ). We worked together for a while restoring and selling antique furniture, I thought it might have something to do with chemicals, polishes etc, but no one really took notice of this. I am on the Ibrutinib arm of the Flair trial and doing really well, been on it for just over 12 months. My husband on the other hand has not been so lucky, he is on Ibrutinib at the moment already having had FCR. Idelalasib. Venetoclax. So you are not alone and with both having it you are able to support one another.

June

[DriedSeaweed]

Yeah what are the chances? Maybe get the water tested? I keep meaning to get mine checked. I live near an airport so I wonder if jet fuel or other chimicals could be seeping into ground. Two people up the street from me died of brain cancer. I should start canvassing the neighborhood...

[PlanetaryKim]

Monsanto's weed-killer/herbicide Roundup (specifically the ingredient Glyphosate) has been linked to CLL and other non-Hodgkins Lymphomas for a while now. People thought to be most at risk are those working on a farm or living near commercial farms where large quantities of glyphosate are used. roundupcancerlawsuit.com/ro...

The VA recognizes a connection between Agent Orange exposure (herbicide used in Vietnam War) and CLL. publichealth.va.gov/exposur...

I would expect other environmental contaminants to also be possible contributors to CLL.

Wishing luck to both you and your wife.

kim

[Trish67]

Hi Walt,

I have CLL, diagnosed three years ago and currently on the Flair trial - Ibrutinib / Venetoclax arm. My husband was diagnosed with CML in 1997 and is still receiving treatment. The questions you are asking about causes and risks to children were questions which we asked various consultants. Each one said that it was pure coincidence that we both got a form of leukaemia and that there was no known extra risk for our offspring. We certainly hope that is the case.

All the best, Trish

[Walt424 in reply to Trish67]

Thank you Trish. It is helpful to know others have traveled this weird path too. I think you're right that it's a coincidence, although I keep reading mystery novels in which the hero insists there's no such thing!

[scfmg]

My father was diagnosed with CLL in 1985. We lived within 20 miles of Three Mile Island in Lancaster, and were home when the nuclear reactor meltdown occurred in March 1979. I remember my dads oncologist at University of Pennsylvania telling him that within a 25 mile radius of TMI, there was an extraordinary amount of people coming down with Leukemia within 10-15 years after the meltdown. I was diagnosed in 2015..much later. Coincidence? Or could the extreme amount of radiation triggered a gene in both of us? As a side note, I am a dental hygienist and have taken dental xrays for 35 years. Hmmm...