Stress and CLL

[aremmick]

Disgoned with CLL in Jan 2016, every 6 months doc said normal progression counts up about 5,000 each visit. Had visit in Feb counts at 22 . Then in May came home from vacation to a flooded house, supply line under kitchen sink broke (house 5 years old) had to live in a hotel till last month. Now renting a home till repairs are completed. Had doc visit in Tuesday counts up to 51. Other counts within range, asked if stress could be a factor doc said no. Schedule to retake the fish test again (which was normal previously). I'm thinking it was the stress. Will the numbers ever go back down after my life settles? Got approved for medical cannabis to help with the stress and anxiety.

[Kwenda]

I would agree that stress is a factor.. Stress can cause some inflammation of body tissues.

To reduce stress..

Regular exercise, and the exercise MUST increase the heart rate a little to be effective.

De-stress in ‘The Green’, as in walks, runs, cycling in open air, forests, heathland or parks.

This has been proven to be more effective than exercise in any gym, which often is contaminated by germs and viruses from sweaty bodies..

Dick

[Hidden]

I think stress contributes to CLL progression. You have been through a lot. Best to avoid stress as much as possible before the next bloods and then you'll see if fact or fiction. Try not to worry CLL is not just a lympocycte numbers game there are many other factors.

[Newdawn Administrator]

Hi aremmick,

Stress and external pressures put massive pressure on coping abilities that are already undermined by CLL anxiety. You’ve been to ‘hell and back in a handcart’ with your dreadful flooding experience which took you out of your comfort zone of home and it must have been an acutely stressful and distressing experience. Would or could this increase your ALC (not sure if you’re referring to your ALC or WBC incidentally)? Truth is I’m not sure if a direct causative link could be established but I’d be amazed if it hasn’t taken its toll. When I’m stressed, my b/p increases, my heart rate elevates and my blood glucose levels hike. The body reacts to stress in so many ways and as Dick has said, inflammatory processes come into play and errant cytokine activity is probably activated. My blood glucose is higher if my joints are inflamed so why couldn’t lymphocytic activity be increased by intense psychological stress?

Even if there isn’t a proven physiological reaction, stress is psychologically corrosive and our ability to cope generally is undermined.

In truth I’ve found that my ALC doesn’t necessarily follow predictable trends. It’s risen when I thought I felt good and dropped when I haven’t. My WBC does however seem to be much more sensitive to inflammatory stimuli.

You need some time of calm and less aggravation in your life now. I hope you can find it and then assess whether the upward trend in your levels is affected by external stress or simply the fairly predictable upward trajectory we have in CLL.

This isn’t directly linked to your question but it’s very interesting nonetheless. It certainly demonstrates that ‘Chronic lymphocytic leukemia is phenomenologically distinct from most cancers, yet understudied. This study is the first to examine illness perceptions as predictors of stress, depression, or fatigue in an adult blood cancer.’

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

Best wishes,

Newdawn

[holly2]

Although the medics seem to always disagree, I agree with the replies above that stress does take a toll on the body and probably exacerbates CLL.

In December 2015 I had an unwelcome visitor in the roof void above my kitchen. It sounded more than just mice and I have never had mice there before. So reluctantly (because I do not like killing anything) I called in pest control who put poison up there. It worked and after a few days there was the awful smell of something dead (not nice in a kitchen). It is not possible to remove anything up there because there is only a very small hatch you can stick your head through but not more than that.

So a few days after that the flies started. Over the next 10 days on the run up to Christmas my house was filled with hundreds of bluebottle flies. It was an utter nightmare.

I then caught a cold. Probably caught by visiting busy shops trying to find things to kill flies with. That led to an upper respiratory infection and put me in hospital for 7 days over Christmas!

8 months after that I learnt I had reached the point where I needed treatment for my CLL after 10 years on W&W.

I am convinced all that stress, the infection and loads of antibiotics in hospital led to worsening of my CLL.

So I have been doing online Mindfulness courses through Futurelearn.org. In fact another of these brilliant courses is starting this coming Monday and I wholeheartedly recommend them to all CLL sufferers whatever stage you are at.

All the best,

Holly

[Newdawn Administrator]

This is very interesting article relating to the subject;

"When under stress, cells of the immune system are unable to respond to hormonal control, and consequently, produce levels of inflammation that promote disease.“

sciencedaily.com/releases/2...

Newdawn

[Ned1]

At diagnosis, I asked the hematologist if stress was a factor in the development of the disease. He dismissed the possibility outright. He said all of us have stress. I would argue, however, that not all of us react to stress in the same way. My family doctor believes stress is the culprit in the formation of a lot of conditions.

In my case, the lymphocyte count (which I know is only one factor in CLL, among many) only began to be out of the normal range during an extraordinary period of stress involving the diagnosis of terminal disease and death of both parents and two close friends within the span of 18 months. This was happening at the same time I was leading a large-scale organizational reingineering project at work.

Perhaps this was all coincidental but it does make me wonder.

I do strongly believe in the value of exercise as a stress releaser. This was the case pre diagnosis and more so now dealing with the uncertainty of W & W.

Good luck.

[aremmick]

Thanks for the info, I know stress has been a big factor in my CLL. Just got my medical cannabis approval hoping to help with the stress, anxiety and depression. Good luck to all of u out there!!!

[CLLCalifornia-USA in reply to aremmick]

You might want to look into yoga. Not only does it calm the mind, it stretches and tones the body. There are classes on tv to get you started. Kind regards, Sally (USA)

[eperl]

Ever since I got a hot tub my numbers have been in the normal range. My lymph nodes haven't changed so it's a SLL presentation. My last check up my lymphocytes were flagged because they were low lol!

Can't prove anything but I think there is a correlation. I love my daily soak!

[Raglan]

I'm always amazed how educated doctors can outright say that stress is not a factor. While having stress is a normal part of life the stress that you've been going through is not part of our regular daily stresses. I had a dr tell me the same after I told her within the 14 months my husband of 46yrs died ( I was the primary care giver for 6 years), my 10 yr old grandson had major seizure 10 miles out in wilderness, 1 sister had to have leg amputated due to botched surgeries, I was in an automobile accident that almost killed me (recovering ) and I had customer not paid a huge sum of money. I could go on ... but really stress is not a factor!!! Now at hearing any little thing I can feel my body stressing which affects my chest and head.and probably my CLL. As other posts suggested I'm trying to exercise more, taking walks, long baths with essential oils, doing breathing exercises, having steam baths, not watching anything on tv that makes me anxious, trying to cut down on being around negative people (drs included) being very conscious about what I'm eating and drinking. I'm also going for acupuncture , osteopath and chiropractor treatments. Gotta throw everything we can at it to find out what works for each of of individually, TC

[Spacee]

Doctors and stress. Hubby is the one with CLL. I have CFS (chronic fatigue syndrome) for 30 years. I have been studied at the NIH. And they said it was stress. Why? Because back in the 80s (when I became ill), rats who were but under stress had their temperatures rise. Well, mine was not up, it was low. Which means viral. Anyway. Now, the NIH has just funded research. The doctor who was asked by China to study SARS is the one who is interested in CFS. For all the sick, hope he finds the cause. If you read this far, thanks for listening!

Spacee (Linda)

[Farrpottery in reply to Spacee]

CFS, low body temperatures, auto immune disorders go hand in hand with hypothyroidism and chronic inflammation. I'm just saying...

God Bless

Farrpottery

[Spacee in reply to Farrpottery]

Also goes hand and hand with activated Epstein Barr virus. Always test 8 weeks past an acute infection ;(

God Bless you too

Linda

[Farrpottery in reply to Spacee]

Epstein Barr is one of 4 main causes of Hashimoto's Thyroiditis. So sorry you're struggling with these issues .

I've been there for 50 years.

Farrpottery

[Farrpottery in reply to Spacee]

Linda,

How is your husband doing? Mine was diagnosed in 2013. Has had PCR in 2013,

FCR this year for 3 months...then stopped,

Now he's on IB

This roller coaster ride of good news bad news is really stressful.

We feel blessed to still be here though. We are grateful he wasn't diagnosed earlier and Ibrutinib wouldn't have been available for us.

His sister was diagnosed in 2005 with ALL and passed in 2007.

Does your husband have any family with Leukemia?

Sincerely, Pamela

Farrpottery

[Spacee in reply to Farrpottery]

Hey Pamela, Wow you and your husband have been through a whole lot!! I guess your husband does not have mutations? Mine has the p53 (or it might be t53, just found that out Thursday. And the dreaded 17p-. Any one of these means he will not respond to chemo. But he seems to have the gentle kind, not the agressive. Very blessed there. Reading about the p53 mutation. I think it started with his mother. She died of colorectal cancer at age 78. His sister was diagnosed with stage 4 cancer of the lung inoperable which the article is linked to the p53 mutation too.

Her cancer has mutations and they finally went to MDA and they said "you will be chasing tumor mutations the rest of your life". That's really sad.

So, I imagine that our 3 sons and their kids will need to keep annual doc appts with complete blood work.

My brother died a few weeks ago of liver cancer. I think it is the same as my grandmother had. Cancer really stinks!

Bless you,

Linda

[Farrpottery in reply to Spacee]

Good news for you. My husband also has p53/17 deletions.

The PCR in 2013 put him in remission for 3 and a half years.

The FCR caused terrible upper respiratory infections for April May and June. His platelets crashed too.

So far this IBRUTINIB is especially for the p53/17 deletions. So hang in there and keep praying that it works.

I think we must be cousins or something to have all this mess going on at the same time.

I think all these cancers and auto immune disorders are caused from toxins in the environment we've unknowingly been exposed to over our lives.

I'm 64, hubby is 66.

Farrpottery

[Spacee in reply to Farrpottery]

That was my next question, your ages. I'm 68 and hubby will be 70 on Oct 6. I agree with the toxins, so many cancers in friends or their families too.

Linda

[Spacee in reply to Farrpottery]

I am following your posts since our hubbies are so much alike in their deletions. Haven't noticed anyone else who has both.

I am praying that it works!!!

Linda

[Farrpottery in reply to Spacee]

Hello Linda,

I was wondering how your husband and you are doing?

My husband still doing well with some minor side effects. My hubby is on a reduced dose of 2 tablets Ibrutinib a day due to a secondary diagnosis of Histoplasmosis.

2 tablets appear to be working very well this far. Have a blessed holiday.

Farrpottery

[Spacee in reply to Farrpottery]

Thank you Pamela for your update. Wow Histoplasmosis! I am so glad to hear the 2 tablets are working well.

Hubby had his routine with the pcp doc who did blood and everything was stable. He is still working full time until June 1.

We are all blessed for sure. You have a wonderful holiday!

Linda

[AussieNeil Partner Administrator]

I've pinned another post on stress which resulted in considerable discussion and referenced this post in it here: healthunlocked.com/cllsuppo...

[roszika]

Once again a doctor who says no it's not stress. How irresponsible. of course stress plays a factor in all sorts of illnesses so why would it not in CLL. As I have said before. We have good doctors, mediocre doctors and bad doctors who couldn't care less so intead of researching to find that stress could be a cause of many sorts of cancers instead take the easy way out and just say no.

[Cindy1462]

Doctors don’t know that stress is not a factor in our disease. They like to think they know all the answers and they don’t. We would think more of them if they just said they don’t know.

[Hoffy]

I heard from a friend that someone she knew said his nodes grew after a fight with his wife...

[Peggy4]

My daughter came with me for my first haematology consult. I have for 20 years (through matters beyond my control) led a very stressful life. She asked the consultant if stress had caused my cancer, the answer 'definitely not caused it BUT allowed it to the forefront'

[Cmac70]

Hi everyone,

I truly believe that stress was a big player in my Cll diagnosis in early 2016. I was 45 and had been under alot of stress both at work, financially and my wife had left a year before. Leading up to this time i was finding myself always drained from stress i thought, and it was likely a huge factor. I tried getting my life back together and started exercising i lost some weight but was finnally promted to visit my doctor due to fatigue. Thats when they found out i had CLL stage 1. Winter of 2017 i had a TIA because my left caradic artery collapsed and was not repairable. There was no apparent reason for this all my cardiac test came back very good. I put alot of stress on myself still and over the years and i am sure it may not be the cause but is certainly a contributer to where i am now. My recent ALC went up 10 and feel like my spleen has gotten a bit larger.. i am back at the doctors this week to go over my latest test. I find getting out fishing helps me relax more.

Chris

[Farrpottery in reply to Cmac70]

Dear Chris,

Keep fishing. Or dream about it from the couch if you are too fatigued. That what my husband has done for the last 4 years since diagnosis

Now that he's on Ibrutinib, he's actually strong enough to take his boat out for a day trip on the river.

That's an absolute miracle. 90 days ago he was sleeping 15 hrs a day unable to walk half a mile.

We are so grateful for the research and opportunities these new medicines have brought to the table.

Blessings to you,

Farrpottery