Completed 12 months on w&w

[vinnet]

Dear fellow CLLers

I am 66 M,CLL stage0 ,completed 12months of wnw.I asked onco if he can guess if I can remain on wnw indefinitely. He said it depends upon my luck!!!!

My hemoglobin has declined to 13.1 from 13.8 and platelette from 292 to 211 in one year. WBC remain 19.9 with lymph 71% and neutro 23%. I also feel very low body energy, experience high stress in teeth( feel like grinding them), want to lie down and early symptom of depression( feeling of helplessness, wanting to cry.). VitB12 and D are in normal range.No B symptoms.

With wealth of wisdom available on this site, can I get any advise on how to improve my hemoglobin, RBC , platelletes and most importantly get back to state of my health at time of dx one year ago.

I am sure I had CLL for at least 3 years before dx, and I was quite fit. I have been Yoga for past 10yrs.Even in May this year, i travelled to Australia for two week vacation!! Onco says my problem is psychological, but i cannot understand why this happened in last two months.

I await to hear...

regards

vinnet

[UK-Sparky]

Welcome Vincent, I too am on W and w. I have been toldfolic acid can help low platelets, next check is in Nov so will let you know if count has gone up from 119 6 months ago

Milton Keynes Marc

[vinnet in reply to UK-Sparky]

Thanks Marc.

[Tommays56]

Hi Vinnet

I am a 61 year old male with a 2017 diagnoses and similar time frame for my CLL and can share a bit of how it affected me

I have been successfully treated for PTSD for 25 years and during that time there were two VERY difficult periods that were completely physically debilitating with no illness

I never though i would say this but if i had never had PTSD i do not think i would be doing near as well as i will most likely see someone ever 45 days the rest of my life and i have leaned so many coping skills from it , if i am having and issue help is a phone call away as this can be a very lonely illness and i would certainly find someone to talk to

On to the physical part my CLL started in 2014 without a diagnoses and devolved very slowly and it had no effect on me until the spring of 2016 when i started to have various physical issues but the only deal breaker was my right planter fascia in December 2016

I "was" and ultra trail walker/runner until April 2017 when i finished my last 44 mile event and figured i would just take a time out for a few months and let my body recover BUT it did not and when i had my Physical the blood levels had risen to the point i had to see by and oncologist in May

During this time the CLL became very active and my WBC and ALC went from 10 and 8 to 21 and 16 in about 7 weeks and it was very stressful as it was not clear how aggressive it would continue to be

For what ever reason it settled down in late July at 17 and 14 and has stayed stable and this has allowed me to adjust but its pretty unlikely i will be able to resume my life before CLL and we have just changed how we go about things

The right foot continues to be and issue and after not healing despite therapy and everything that could be tried i am seeing a specialist in NYC and had and MRI on Friday and the Doctor will talk to me next week about the treatment possibility's

[vinnet in reply to Tommays56]

Thanks Tommays56!

Cant believe that at 61 you can be doing 44mile event. Unthinkable that CLL can happen to such physically strong person.

Can u elaborate on why u think your life has changed and what adjustements u did post CLL dx and why? Why do u think that u may not b able to resume pre CLL dx life? I am struggling with low body energy and mild depression, which i dont know if it is due to CLL or my mind ?( maybe my retirement from work 18months ago is a factor too. CLL must have been there for past 3 years but I was fit and fine .No issue of low body energy.)

[Tommays56 in reply to vinnet]

Well

I have spent my entire adult life very involved in a wide variety of sports on and individual and team basis and there have been a number of really serious setbacks that resulted in injuries that I always recovered from and came back for more

One of the bigger issues was about 10 years ago when I had Fluoroquinolone Toxicity after what was supposed to be a routine antibiotic treatment for a chest infection and it took a while to recover and is why i walk a lot more than I run

2015 was my last trouble free year and I took my dream trip to France and hiked the UTMB race course which is 105 miles with 40,000 feet of accent and 40,000 feet decent over a 7 day period and came home in fabulous shape and then finished my first 50 mile nonstop race and life was great

Then in the spring of 2016 as the CLL was progressively getting worse in the background and the sinus/ teeth /soft tissue problems started and I was not able to finish my April event and struggled through my 50 mile event in the fall until the foot forced me to train indoors in December 2016 until the last event in April 2017 which actually went really well

But right after that the CLL went through that really rapid stage and despite spending the bare minimum amount of time on my feet the foot continues to be and issue and hopefully the MRI that was done on Friday will provide a course of action that will allow me to walk without pain but I still have to walk about 5 miles a day for work so I am not sedentary but that’s about my limit for now

I also have a lot of Bicycles and a Concept 2 rowing machine I have done some riding and while mentally it feels good physically 45 minutes on the bicycle at a modest effort tends to require a 2 hour nap so it’s not really helping

My number one priority is getting through the work week and my job is aware of my health status and very supportive as for better or worse I have to keep going 3 more years until 65 as health insurance costs are insane here

I still have a home to take care of and a grandchild to play with so I have to break house chores into small blocks of time and try not to over do it as the grandchild has endless energy and I have to save up to be able to enjoy that time

If the foot can become pain free it will definitely allow a more active life as the daily pain really wears me down

But unless the CLL progress to a point we’re it requires treatment and I get a good remission the old life is not coming back and I think my current CLL stage 0 status is much better than all the risks involved in any of the treatments and I am slowly finding new ways to have a good life

[vinnet in reply to Tommays56]

I am amazed ! 5 miles walk to office.And working in office/playing with grandchild.

So, do I conclude that my low energy is mostly making of my mind ?

I am fully of the same view to get indefinite wnw with reasonable energy to enjoy remaining life. No study , however, tells me what i can do to ensure infinite wnw?

regards

vinnet

[Txkate]

Congrats on getting through the first 12! I found the first year was a real roller coaster emotionally with scans every 3 mo, pre scan blues, post scan news, only to finally get back some sense of normal while creating the new mental normal of living with cancer. I am now 7 years into W&W and forever changed, mainly in a good way. About the 2nd year in I got pissed off and as many will agree, we go through all the stages of mourning, and as we also know, people in mourning go at their own rate. So pissed off me decided to make a real effort at taking back my mental space. No more node checking except right before scan dates, get out and walk as my weight was increasing from emotional eating, and use humor more, to enjoy life. Once outside I begin to see things in new perspectives, and I began to write poetry again, or just thoughts. Then I began to take photos with my phone on my walks which inspired me even more. During the past few years my photos, art and writing took on a new depth, and though I still have fear right before scan dates, once a year to year and half now, I have evolved emotionally to some degree. If I get sick for a few weeks my mind does begin to panic a little, but over this long course I have a motto-‘when in doubt-check it out’

I usually go by what my body is telling me, and go in if it seems like I am not feeling better. I went off of HRT after 25 years and my arthritis went haywire, was checked for RA-was negative. Just had two knuckles replaced last week on right hand. So re-habing that. Case in point, life goes on, and the CLL goes with you. You will get to the point that, yes you know that shoe may drop someday, you refuse to give up your mind space to it until then. Be pro active with your health, know that each year they are creating better treatments should you need it. CLL is a marathon type cancer, not a sprint. Yes we can live with the little bastards riding along, but we control them, or at least we must convince ourselves of that to move ahead. God Bless you on your continued journey!

[vinnet]

Dear Txkate

Very very reassuring for me!!!

In india, there is hardly any CLL specialist , and I do want to live with CLL like many people in india live with diabetes.

What is your age? You seem to have good physical energy levels, which is my biggest issue affecting my qol. Did you do anything specific to enjoy this long W&W other than training your mind and becoming more busy? Like any foods/supplements or exercise or counselling to address fear/stress?

I really loved your suggestion of not allowing my mind to dwell into shoe dropping eventuality. I will start talking to myself starting immediately to create this new habit.

Being Indian, spirituality comes to us easily and so I am getting deeper into it, depending upon my energy. This, I hope shud do what u achieved thru your photo, art and writing.

Thanks a ton again for encouragement and good wishes. Keep in touch..

vinnet

[MsLockYourPosts Passed Volunteer]

Vincent - Talk to your dentist about getting a 'mouth guard' to wear at night, which controls the teeth grinding. Repeated grinding of the teeth can cause problems for them and for the tempromandibular joint, which can, in turn, set off terrible nerve and muscle spasms. Sometimes adjusting what are seemingly little things, helps us cope better with the bigger things.

[vinnet in reply to MsLockYourPosts]

Thanks pkenn. I will see my dentist...