Living healthy still!

[GeriGi]

Hi all! I am new to this post! I've been on my CLL "journey" for 11 years. Still no treatment. Just wanted to say HI!

Geri

[Newdawn Administrator]

Hi back to you Geri and inspiring to hear you're still treatment free and healthy after 11 years. Nice one and a warm welcome with your story!

Newdawn

[Peggy4]

Hi GeriGi

Wow 11 years, great to hear this!

Peggy 😀

[TinyTattooedToes]

Hello & welcome 😃😃 I'm 10 years w&w this year, long may it continue for us all!! 😃

[NooNoo14]

Good to hear Geri. Long may it last!

Netty

[Kathp]

Hello there and great news regarding your "non-treatment"! Long may it continue for you! X

[DESSIE]

This is really good to hear and long may it continue Geri. I'm w&w for 6 years now at the age of 58 and just had my annual check-up on Friday. All pretty stable with Lymphs around 17 and no indications for treatment.

Maybe we could get more stories like this to balance the posts from our less fortunate fellow CLL sufferers?

I heard a comment from a medical professional that 70% of people diagnosed never need treatment. However, I don't know if this is true or how the statistic looks when based on age of first diagnosis.

Best Wishes

[Psmithuk in reply to DESSIE]

I was diagnosed in 2003, although it was picked up in 2001, no treatment so far.

I thought it was 30% of CLLers who needed no treatment ? Anyway, I hope I'm one of them!

I prefer your figures!

[DESSIE in reply to Psmithuk]

Great to hear that you are doing so well. Maybe 70% is incorrect but at least there is a % of people to give us all hope!

[5wolfies]

I wonder, for those of us who haven't needed treatment, do you have any symptoms, or feel like the symptoms have progressed over the years (I'm 8 and counting)? I definitely have felt more fatigue over the years, but not enough to outweigh the risks/side effects of treatment. I often feel that being tired is simply my new normal, but I am able to work, exercise and live a very full life still. Love to hear from others.

[nitram120]

Hi 5wolfies,

I just hit my 7th anniversary of w&w. I am in my early 50's and luckily feel great. My only symptom would be fatigue at the end of work some days. I go home and shut my eyes for 20-30 minutes to re-energize.

[GeriGi in reply to nitram120]

Me too! Can always be worse. I am also in my fifties. 54 to be exact.

[jettyguy]

GERi,thats wonderful! Hope you have at least another 100 years in healthy W&W! I can't resist asking you what do you do if anything to remain so vital? Exercise,mind management, diets,etc.? One thing that always enters the equation is what are your variants(markers) and when you were diagnosed were your blood counts just mildly out of whack or did you have the full monty? And I am curious if you found that your original markers changed since diagnosis. Thanks.

[GeriGi in reply to jettyguy]

Well, it's been one heck of a journey. My WBC was noticed at about 12,000. Currently 60,000. I have the "better" markers; zap 70 negative and IGVA MUTATED AND 1314q deletion. I've had a slightly progressive disease, but truly believe that my diet and supplements have aided in my long term survival and excellent health. I am mostly vegetarian. Take multiple supplements and exercise regularly. I also keep a positive attitude. I hope this helps! Wishing you also the very best!

[vinnet in reply to GeriGi]

Gerigi

I wish you many more years of wnw!!!

I am 66 and dx 9 months ago. Except fatigue, no other symptoms. WBC hovers around 20.Stage 0. WBC are elevated for past 4 years but only in last year's annual health chk CLL was dx. Doctors never chked it in earlier years.

Can u advise what suppleme ts u take and dosage? I wish to do whatever in my hands to have wnw of 11 years or more!!!

I am indian, living in delhi and vegetarian since birth. Also no smoking or alcohol.

vinnet

[pkpayne]

Thanks for giving us all some inspiration today! Long may it continue for you.

[GeriGi]

I agree let's post inspiring things to keep everyone strong! Our bodies listen to what our mind is telling it. So, make your thoughts align with what you want your body to do. Even if it is treatment you're going through. Keep it positive. Set yourself up for success not failure. We have nothing to lose!❤

[Jacksc06]

Hi Geri & welcome. 11 Years & no treatment ! long may it last.

[Andre1]

My mother who is 78 now was diagnosed in 1992 and is STILL on watch and wait.Her wcc did go up to 140-150 around 7 years ago but is now around 45.She started taking lots of supplements 7 years ago , is very fiesty and has lots of activities she is involved with.She has a strong Christian Faith also.

She is the most positive, dont take no s..t person I know..and is not afraid to give me a good telling off even at my age

[GeriGi in reply to Andre1]

This is so inspiring. Thank you! This disease can go up and down. It's sometimes hard to not panic! I pray to be like your mother. Thank you for sharing.

[Andre1 in reply to GeriGi]

My Pleasure ...keep yourself active, thinking positive , have lots of fun rewarding goals that keep you needed and looking forward all the time and enjoying life ...and, if you are of the mindset like my mother is, look at supplements and vitamins

[Loves2walk]

Thanks for all the positive posts!!

[Wordmonger]

To add to the string of positive news for those newly diagnosed, I'm 13 years on W&W, was diagnosed when I was 50. So far, so good, but managing the nagging psychological issues that creep is an ongoing work in progress🙂

As a result of recently finding this brilliant site with so much good information and so many knowledgeable people, I will be changing how I approach my annual visits to the haematologist, since he has never shared the FISH test results he did years ago and is generally fairly non-communicative. May be time for a change!

[GeriGi in reply to Wordmonger]

The more knowledgeable we become about our situation, the better choices we can make. Doctors are people too, not God. So, be sure to do your homework. Wishing you well!!

[vinnet in reply to Wordmonger]

Bleimsner

U go once a year . I am 66 dx 9 months ago. I am asked to review with onco every three months!! What decides monitoring frequency? Are there any standard norms?

best wishes

vinnet

[Wordmonger in reply to vinnet]

Hi Vinnet, I hope you're keeping well and send you good wishes in Delhi. With regard to your question about frequency of checkups, since my blood work results haven't changed drastically in the 13 years since diagnosis, I was relegated to the once-a-year clinic after about two years of more frequent checks.

I don't know what markers I have, except no CD38, as I've never had the specialized tests to determine those (unlike in the US, the tests aren't done unless treatment is indicated.). So my guess is that you are being checked more often until they can see how your counts are behaving and whether and how fast they're trending up. From what I've read on HU, fluctuations are normal and it's longer-term trends that are important.

I've learned a lot from this site, but will admit I have also been alarmed and even depressed reading about some people's more grave experiences, as it's hard not to think that this may be in store for me too (even though I may be lucky and not need treatment any time soon.) So I've had to remind myself to live one day at a time and not let my active imagination go to the darker places!

I hope this last bit is helpful, and wish you all the best!

[vinnet in reply to Wordmonger]

Bleimsner

Thanks for very comforting reply. I feel very comforted by reading posts from others in HU.

I was dx thru flow cytometry. CD38 is not there. But there are others like CD5+ etc.. ..,which I dont understand.

Although I fully understand that I am behaving as my own enemy by thinking about my CLL , I still seem to carry this CLL MONKEY on my back..I really want to know any method of getting this monkey off!!

I am sure that I had CLL even before dx, but then I did not experience any fatigue!! This tempts me to believe that 90% of CLL fatigue comes from thinking about it!!! If my onco puts me on annual chkup, I think my fatigue will go away. If there is any way to predict that i will be on wnw for 13years, I am almost sure that i wont have any fatigue...

Hope experts can do more research on CLL and manage it more scientifically and not in such a hapazard manner..

And thank you again

regards

vinnet

[Wordmonger in reply to vinnet]

Good morning! I'm optimistic that when and if the time for treatment comes, the new class of drugs will be very helpful; this is what keeps me going!

My CLL "monkey" is always present and sometimes misbehaves badly! I started to feel very fatigued (after reading about fatigue on HU), and was sure that my blood work in June would show I was heading for treatment, but no . . . it was the cloud of worry.

[vinnet in reply to Wordmonger]

Thanks...

I need to manage my mind to avoid fatigue

[GeriGi in reply to vinnet]

Remember adrenaline can cause fluctuations in your counts. So be calm and carry on my friend

[Wordmonger in reply to GeriGi]

Not meaning to imply at all that your fatigue isn't real, Vinnet.

[vinnet in reply to GeriGi]

thanks GeriGi

[YjbCLL]

We need more stories like this on HU. I swear to G-D, I read some stories from some of the people here and I feel like jumping off a bridge.

[GeriGi in reply to YjbCLL]

Yes we have to keep each other strong. It's nice to know that there are others that live with this thing too!

[ygtgo]

Hi GeriGi

Welcome to the site ...

Oh ... and I'm sitting in the same 11 year old 'bus' ... here's to a smooth road ahead.

ygtgo.

[GeriGi]

I'm hoping that if we keep ourselves healthy and can avoid chemo for as long as humanly possible there may be a less toxic treatment available. I've considered an allogeous vaccine if things ever get bad. May not CURE, but may keep things at bay for awhile longer. Just thinking. Keep positive, healthy and strong. Have faith!!

[Murzik in reply to GeriGi]

Just read your post,I m New to Sll/Cll d's, could u pls elaborate a little more about that vaccine: who is "eligible",how and when it is administered, etc. I am strong opponent to chemo. Million thanks

[GeriGi in reply to GeriGi]

It is offered through an alternative cancer treatment center named ISSELS. Look it up and tell me what you think. I'm not into witch doctors and have done years of research. I think the worst side effect of this vaccine is TLS (tumor lysis syndrome). Also, probably the price. Otherwise, with all of the advancements in chemo with our disease, that's probably the best choice. Unfortunately, but again, I am NOT an adversary for chemo! Our disease is different. It does usually respond and there are options if it returns. Our hope is for durable remissions. CLL is usually a treatable cancer.

[Benlewis in reply to GeriGi]

I’d recommend that anyone considering ISSELS treatment do some research first. Their claims are unproven and their treatments are considered ineffective by the American Cancer Society.

[alexmcg48]

Thanks it's good to hear that you can be on W&W for so many years. I'm only 3 years in, but thankfully my WBC is rising slowly & I've been told that if it continues to do so it's unlikely I'll need treatment anytime soon.

I'm doing everything I can to keep it that way by exercising regularly, trying to keep my weight down & doing nothing to excess, but we're the lucky ones when you read what others are going through & my thoughts are always with them as they battle to get to where we are currently.

Stay strong & positive.

[GeriGi in reply to alexmcg48]

I believe we cannot wish this away, but by being positive we direct our bodies in the right way. Make sense?

[Pattyannie]

Thanks for your uplifting post! It’s only been 6 mos since diagnosis for me. I’m so grateful to all on HU who comfort, educate, support and inspire. As you indicate a positive approach and making a healthier lifestyle a priority is a proactive management approach to CLL. After the initial shock that’s exactly what I did. The reward for me has been feeling and looking better! At my annual checkup & blood work appt. with my Internist his response was, “what you are doing is working!” Hoping to keep it that way and pray for wellness for all of us on this unique journey.

[EvergreenLady]

Hi GeriGi and all the other positive posters. Great to hear your positive thoughts. I was diagnosed Jan 2020 and though feeling positive to start with after two years of the pandemic now feeling my resilience is ebbing. From being very fit before my fitness levels are now in the lower ranges. Fatigue seems to hit so much more now even though my counts have stabilised in the last few check ups and my consultant dismissed my fatigue being due to CLL! So I wonder how to identify, or actually if I need to, is fatigue age related I'm 61, CLL or pandemic fatigue. Cases are still high here so I continue a restricted life until I feel it's safer to mix again. So it's been good to read all the positive posts and perhaps I need to sort out my positive attitude. Take good care everyone.

[GeriGi in reply to EvergreenLady]

Well after “living with” CLL for more than 16 years and now 59; I can tell you to try not to blame everything on CLL. The anxiety from this dis-ease crap is worse. Relax and follow your counts with a CLL specialist. Some people never need to be treated.

[SofiaDeo in reply to EvergreenLady]

I think many doctors are just beginning to realize how several years of pandemic stresses are affecting people mentally as well as physically. At least you have a doc who recognizes Cancer Related Fatigue, a number of people here have said their docs have dismissed their fatigue as being due to CLL. I am more in agreement with the specialists who are saying, years of Covid stressors are indeed affecting at least some people in a number of ways. Some have designated a specific Covid stress syndrome:

adaa.org/learn-from-us/from...

I do believe that long term stress, whether from CLL concerns or Covid ones, can contribute to exhaustion. Excessive glucocorticoid production (like cortisol) contributes to chronic fatigue syndrome.

apa.org/topics/stress/body

mayoclinic.org/healthy-life...

[GeriGi in reply to SofiaDeo]

Stay strong and listen to your “gut feelings”

[EvergreenLady in reply to SofiaDeo]

Thanks SofiaDeo those articles were very interesting to read. It does seem to confirm for me that the years of stress and anxiety have contributed to exhaustion. Onwards and upwards, today is a good day so it's make the most of it and learn to nurture my resilience ready for the time when joining in with life will not be so anxiety provoking.