New Member: I have been on watch and... - CLL Support Assoc...

CLL Support Association
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I have been on watch and wait since 2012. CLL due to Agent Orange in Vietnam. Being seen by the VA every year, I keep telling my Oncologist that at times I feel really lightheaded and kind of uncomfortable, really hard to explain, some nighst cannot sleep and toss and turn for hours. He suggests seining my PCM, they are at loss too. Have had multiple;e MRI's , brain scan etc. No real pain. Exercise 3 times a week. Not sure if any one else has these type of symptoms.

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Is there any possibility these feelings could be stress related Desertrat? A feeling of preoccupation, light headedness and insomnia can be due to underlying anxiety. I certainly have nights like that.

Make sure you’re fully relaxed before bed with no screen work or stimulating tv or books. Exercise will help and perhaps a relaxing bath.

If you think there’s a physical causation, keep pushing for answers but be mindful of your emotional needs too because sometimes they can become intrusive even when we think they’re under control.

Best wishes and a very warm welcome to the site! 😊

Newdawn

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Thank you for the response, I think sometimes the same thing, I really stress out thinking about any little thing that goes on with my body. I still work and go to the gym 3 times a week, do feel better after a short workout and walk.

Thanks again

William

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Lightheadeness, along with headaches, dizziness, blurred vision and sleeplessness were symptoms I had at diagnosis and before treatment but it was attributed to swollen lymph nodes in my neck. I assume they've checked you for that? This was alleviated almost immediately after starting treatment with Gazyva and ibrutinib.

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Might consider a cardiologist ? I was amazed a number of years ago, how atrial fribulation, effected me... I had no idea it was an issue.

Can you get an opinion outside the VA system.. on your CLL?

~chris

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I think I will have to do that down the road. I'm in AZ and Banner University has a great cancer center in Tucson. Thank you for the reply and the advice.

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Best see a CLL specialist, not all cancer centers have them.. here is a listing of suggested CLL doctors,

cllsociety.org/toolbox/cll-...

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I am new to this site and decided to respond when I noticed your symptoms were the same as what I was experiencing and that you are a Vet exposed to Agent Orange. I have an uncle and a good friend both who are Vietnam Vets with CLL from Agent Orange like yourself. They have been my source of information and a shoulder to cry on as well as this forum.....I read the information I find here every day and find strength from all these wonderful people who are in the same situation. (Thank you very much for your service to our country and I am so sorry you are going through this)

I have been on watch and wait since 2016 (I am now 67 yrs old) and my oncologist decided that my dizziness/lightheaded feeling and sleepless nights were due to possible stress and anxiety (after ruling out everything else imaginable). I have tried yoga, walking 2 miles daily and biking with my husband several times a week and I continue to do this but to no avail. This CLL/SLL was/is on my mind every waking moment and finally decided to try something to calm my nerves and it has helped so much that I feel like a new person. I can laugh again and enjoy life with my family. I no longer have the dizziness and I can actually get 6-8 hrs of sleep a night...yes!! I see where Others have suggested possible anxiety and stress too...we ALL have it so you are not alone and never give up trying to find the cause of yours; this site is full of good information to help you out. My best to you.

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I suffered from "just not feeling right" during the night (and only during the night) for about two years before diagnosis. It was such a strange sensation and sometimes I felt like I needed to go to the ER (almost like I was facing death!) It felt like a low voltage of electricity was running through my body, especially my legs. As alarming as it was, it tapered off eventually. Looking back, I believe it was the CLL becoming active. So I can really empathize with how you are feeling right now-- generalized complaints or feelings are hard to treat, but they affect us significantly

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Hi Desertrat8, when I “by accident” found out I possibly had CLL I was driving 65 miles per hour racing to an appointment (as I frequently do) and started to feel dizzy, short of breath and filled with anxiety that I pulled off the freeway and called 911 emergency who then took me to the hospital. They could not find anything wrong with my heart but the Dr. with a blank look in his eyes, that I will never forget, said “there is nothing wrong with the reason you came in here, but your white blood count is high and you need to make an appointment to have more blood test done” which of course it was CLL.

I live in my car for work, and still have episodes when I drive but at least now I recognize that’s it’s anxiety which can be a symptom on CLL. I try to give myself plenty of time in between appointment and calmly try to drive.

I am on W&W seeing a CLL specialist every 6 month.

Some have said that CBD oil has helped with anxiety and better nights of sleep. I am considering trying.

I hope you find some serenity and can get passed this phase. :)

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Thanks for the response, I think stress may be one factor, since I'm seem to stress really easy. I have an appointment with my VA oncologist this Thursday, guess I will see what he says, most of the time he seems to think the way i feel isn't related. maybe I'll try to see somebody else.

Thanks again for the advice

William

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First, thank you for your service desertrat. I would ensure the onc you are seeing is a cll specialist.

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Don’t underestimate the worry part of WW. My anxiety from all this has seeped into my physical well-being where I just feel like crap sometimes. I am trying to let it go as much as possible and also see a therapist and it helps. Exercise and socialization has also helped. All the best. 🙏

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