First time posting (Question)

[Mojave]

First time with a question. If you have been told that your CLL is not famili... is there a way to determine where or how one has developed CLL?

I have been in “watch and wait” stage for 10 years, fortunate for me. For folks who have been diagnosed and feel frantic, I’ve been there, but realized that the more positive I stay, the calmer I feel with my situation, I actually realize that the I stay in watch and wait, more information is coming about the disease and better treatment may be in place when and if I require treatment. Keep your chin up, carry on with your life, get lots of sleep, and eat healthy.

Thank you all for your helpful comments and positive view on the what we are all facing together.

Lynne

[Sushibruno]

😊I hope to be on watch and wait that long but my specialist informed me last year treatment is approaching 😢 it makes me sad to write that but I have lots I'd hope. Thank you for the encouraging words.

[clifflee in reply to Sushibruno]

My haematologist told me 4 years ago that we would start treatment in June 2016, all the tests were done bone marrow, ct scan etc. A date was made for a final review of start of treatment and MDT meeting of my hospital Queens Burton together with the Royal Derby and QMC Nottingham the team decided to hold off treatment!

I felt quite unhappy about the DENIAL of treatment!

My numbers have gradually improved over time and he says we are away off treatment. Never worry about something till it happens.........

I always say when someone says we will be late for say a 10am appointment, you can’t be late till 10am so why start worrying at 9am😊

[seelel]

Hello Lynne,

The cause of CLL is unknown. I have kept one eye open for an explanation for the 14 years I've been in W&W, but the only 2 causes I have ever seen published are exposure to benzine or radiation. The majority of us have never been exposed to either of these, so there has to be other causes.

The 1st mutation may have happened in childhood, last year, or anywhere in between. It just manifests in older age; the median being 72.

My hunch is that there are many different ways in which the CLL can start. They are just very difficult to research.

[Mojave in reply to seelel]

Thanks for your response.

[clifflee in reply to seelel]

I had chemotherapy treatment in 2004 after big operation for bowel cancer, I have asked many times if this caused the CLL, my doctor says chemotherapy damages everything, I know this from my teeth, full set before chemotherapy about 10 less now, year before last had 20 dental appointments mostly emergency for things like abscess‘s and crumbling teeth.

[G1llHa1n in reply to seelel]

Several years back on this site there was quite a bit of discussion on whether continued severe stress was, at least, a contributory factor.

[AnneHill in reply to G1llHa1n]

I believe it is a major cause or at least a trigger. My father died of cll in 1968. I have had cll for 19 years. I have had chemo and now Ibrutinib.

Every time there is a change in my cll I can look back and realise its been at a significant time.

I keep telling myself to relax whilst the misery of Covid is here but I wake up feeling as if something awful has happened. I feel shocked and tearful but I am ok during the day.

My consultant will ring on Tuesday and I hope all is well.

We need to stop pushing ourselves and trying to fill every minute of our lives. One day they will find a cause but the treatments are amazing, Anne uk

[G1llHa1n in reply to AnneHill]

I do hope you get good word on Tuesday.

My own thought is that, while it would be interesting to know what started it all off, it's irrelevant now since it doesn't factor in to how we progress. What we can do to improve our prospects is so much more important.

[AnneHill in reply to G1llHa1n]

You are really strong and you will live your life. The Ibrutinib is working well. Its almost a year since I began taking it. My lymphacites are normal and my red cells are improving.

Good luck, Anneuk

[G1llHa1n in reply to AnneHill]

Thank you. Glad your treatment option is doing well for you.

[AnneHill in reply to G1llHa1n]

Thankyou xx

[NaturalWaze]

This is a great question and one I often ask, too! I wish there was a way to know exactly when the CLL and mutation happened. Oh well, you are not alone in wondering this...

[kablea]

Hi Lynne,

I have puzzled about this ever since I was diagnosed in 2018. I am also on watch and wait, have the usual basal cell skin problems but am otherwise fit and well. The problem for most of us in this situation, typically arising after 70, is that we have spent a lifetime exposed to various agents and environments. As a child I was not fed well and had to live with heavy smokers, in poverty. As a 15 year old horticultural trainee I spent too much time outdoors and nobody understood the need to use sunscreen. I always looked bronzed and fit. But I used various herbicides, and other chemicals to fumigate greenhouses. I had to spray Agent Orange onto acres of old meadow and these chemicals are now proven to cause blood cancer. Yet I also used shampoo, soaps, cleaning agents and handled fuel and oil as part of servicing vehicles. I now know that up to 80% of chemicals can be absorbed through the skin, something we all tend to ignore. As an athlete I also damaged my immune system by training too hard for perhaps 10 years. It is easy to see that in retrospect, but not at the time. I would train when I had a virus and be out running in extremely cold situations. Add in work stresses and it is easy to see why our body might be damaged in some way. I still think it remarkable that my body is still working well even though I have to carry this 'bloody' companion along with me to the end.

Keep well

[John_EDN]

Hi Lynne,

My mother had CLL in her 60s and succumbed to it about six years after diagnosis. This was in the 1980s - her father may also have had the disease in the 1950s but records aren't available. I was diagnosed at 57. To my knowledge no other family members have been diagnosed.

My haematologist regards this as a heightened risk factor, like exposure to ionising radiation - I had a job in my 20s which occasionally involved handling weak radioactive sources. But, as I understand it, we cannot define a causal link which blames either my genes or my job - they are just seen as having increased the statistical probability that I would contract the disease one day.

Congratulations on your 10 years of W&W. I've been W&W for four years now, possibility of treatment on the horizon. I like your philosophy - it's one I try to follow myself.

All the best,

John

[Big_Dee]

Hello Mojave

No one knows for sure why CLL is triggered, only that it involves DNA mutations. There is not even a direct link between CLL and agent orange. The only thing we know is agent orange can cause changes in DNA. I am in same boat, I was exposed to nuclear radiation during nuclear bomb testing in US and also had nuclear stress test 6 months before being diagnosed with CLL. We know nuclear radiation causes DNA damage. No one in my family except those exposed to nuclear testing have had any cancer. All that aside, you have the best outlook for dealing with CLL. Blessings.

[JustAGuy]

I understand that there are cases of familial CLL, I believe there are some on this forum with a sibling also with CLL. But most here I think know of no other family members with CLL. So it is not clear.

[Bondwmbond]

I was diagnosed in feb 2015 with CLL andmy older sister was diagnosed with AML in April 2014. She fought her battle for 9 months and sadly she died. We’re both patients at MDAnderson and the leukemia specialists continue to tell that our disease isn’t famial it’s environmental.

[Hilomom]

I was diagnosed with thyroid cancer in 2003. I was treated with I 131, the radiated iodine pill. Have had subsequent full body scans for a number of years, all clear for thyroid cancer. Now I wonder if that treatment has brought me to this CLL diagnosis.

[AnneHill]

You have an amazing attitude. My word of the moment is hindsight. We need to look back and not think that this diagnosis has stopped life from going on.

I am 62 and have had disabling back problems since I was 30. This has had more influence and stress than the cll.

We get 1 life and the cll can help us realise that we have to make the most of it. When this terrible virus goes ( we have to believe it will) we need to look back on our lives and have your attitude, Anne uk