Life expectancy of Chronic Lymphocytic Leukemia

hollymay7 said:

scared
I am just wondering what everyone's wbc count was when they found out they had leukemia. My wbc a year ago was 12.3 and now its 14.4. Should I be worried? Also my differential was normal except my absolute grans were high, 9.0.

dcpchief said:

New CLL Diagnosis
I am a 64 yr old W/M and have just been diagnosed with CLL. I am just finding sites trying to learn more about what I may be facing. My white counts have been listed as high for several years but my new PA at the local VA decided it was time to look further. They had attributed the elevated leukocyte counts to chronic sinusitis and bronchial infections that have palgued me for years. I live in southwest Georgia which seems to be the allergy capitol of the world. I was sent to VA/MCG in Augusta for more specific testing and they had verified CLL. My leukocyte counts have crept up slightly over the last 4-5 years - 15.6, 18.8, 21.6, 23.4, 25.5, 23.8.

They have categorized me as Stage 0 and indicated "watch & wait" with tests scheduled every 3 months over the next couple of years. They have indicated this is something many die "with" and not "from".

What kind of lifestyle changes, if any, should I expect, and has anyone got any advice regarding physical activity and diet. Otherwise I am in pretty good shape.

Thanks,

Don

cllgal said:

Life expectancy of patients with cll
I was dx'd with cll in 2001 (age 54), told by my hemo/oncologist that based on previous blood work I had this for at least 5 possibly 10 years prior to dx.

So I've lived now 11 years since dx and most likely 21 years since it would have been first dx'd had the doctors not blamed the high white counts on infections (sinus, bladder, kidney, etc).

I went 6.5 years from dx to my first treatment in 2008. I had Rituxan maintenance treatment in 2009 & 2010. In late 2011 & early 2012 I had treatment again.

I am more SLL than CLL as I have enlarged lymph nodes all over my body, but those in my neck & jaw area in 2011 were causing me issues with swallowing. My counts, however, had been doubling then trippling to the point I would have needed tx for counts alone, but eh nodes were my reason to 'give up' & have treatment again.

My neighbor's dad & uncle both lived with cll for 25+ years and never needed treatment. I know of many on various boards who have lived 20+ years, again without treatment, and many 20+ years who've had multiple treatments.

I'm now 65 & planning to live with this for at least another 20 years if not longer (my family history is old age, with aunts & uncles living into their 90's and a great aunt until age 106--in good health & good mind as well).

I'm thus far the only one in my family with cll/sll, only 2 other cousins with any cancer at all & both of those were skin cancer as they were sun worshipers.

I have a slew of cousins (my dad was one of 11) & 2nd cousins. The oldest cousin is now 83. So it was not an inherited trait.

As to the person who asked about diet for cll---my only answer is eating good healthy foods, maintaining a good healthy weight, and exercising as much as our cll fatigue will allow is my 'doing something about this' plan. While on w&w for those 6.5 years I needed to DO something, so that was my salvation.

My fatigue level isn't what I'd like, I blame it on the cll not age (my brother is 73 and runs circles around me & I have many friends much older who are also high energy). I do still work full time, it keeps my mind active which is important.

I still do volunteer work, just not in large crowds anymore, I'm more the organizer, the behind the scenes person. Feeling I'm still able to make a difference in the lives of others in need is helpful emotion, and that is a good thing.

Stress plays a HUGE part in this cll, in my opinion. When I'm really stressed about a family matter, work issue, or get to 'fretting' about my lot in life my energy level seems to drop even more. Not totally mind over matter, but when I sort of force myself to think of the issues with others, (like the folks on the east coast after the recent hurricane) I realize how blessed I've been.

Sorry to be so long winded, but there were many questions here so I thought I'd try to cover them all.

Hope you find this helpful...I'm not one of the really fortunate ones with no treatment yet, but I'm fortunate that the treatment has been helpful in reducing the issues and has allowed me to keep on keeping on.

White count was 31k at diagnosis, so I probably had it for a few years prior. I had not been to a doctor or had a blood test since 1995, so by 2001, at age 51  they found it in a blood test.  By 2006, my white count was 65k so I started taking the oral chemo pill called chlorambucil which brought my white count down to about 30k.. Stayed up and down around 30 to 50k for 5 years till summer of 2011 when  I developed a tumor on my left leg fibular bone. Leg swelled, it broke my fibular   They told me to stop the pill and get the leg biopsy where they found leg tumor to be unrelated - they called it a hemangioma - they radiated the leg anyway and put me on blood thinners for a few months. Leg slowly got better but now benign tumor is a pain to live with.
I had not been on any chemo pill while dealing with the leg and by now my white count was 95k and lymph nodes were swollen all over.
So they did 4 treatments of FCR  chemo sept thru dec of 2011.  Leg healed somewhat but benign tumor is delicate to remove and they say live with the leg swelling causing whole left foot to swell if im not lying down or in a recliner. So I sometimes wear a compression sock which helps if I drive or walk -  Cant really exercise much - sometimes leg is very painful as the perio nerve runs thru it - and it grows and contracts.
The 4 months (3 days of chemo once per month), brought the blood counts all in line and for a year was fine - BUT!!  lymph nodes never went down, were especially large all over my neck so they did low dose radiation all over neck.  10 shots of radiation mon thru fri in july 2012 for 2 weeks got rid of the lymph nodes on neck but at a high (thankfully temporary) price. Killed my taste and my saliva which is just now coming back 8 months later. My other lymph nodes all over,  and my white count have steadily been climbing where by Jan 2013 my (1 year after chemo) white count is 82k (all other blood ok) but the lymph nodes are starting to be a problem especially in my groin area.
Onc wants to do chemo again (now 13 months since first FCR chemo rounds) - and try one different drug to hopefully also shrink the nodes.
I'm 62, feeling like crap, and I asked if I could wait a few months - he said yes but not too long.  Now the lymph nodes are so bad that I hear my pulse pounding in my head and can't sleep without sedatives.

SO.....  for the past 5 weeks   I have been chewing apricot seeds (about 50 per day)  grab a handful of 10 seeds about 5 times per day, all lymph nodes have come down dramatically, don't hear my pulse in my head anymore and my white count has dropped in half to 45k in just a month!!   I'm putting off the chemo as long as I can
and feel a whole lot better.  I will update after ny next blood work end of febuary.  For me these apricot seeds are working.
Tried the curcummin and green tea concentrated drops, but the curcummin gives me bad stomach aches - cant take it. Thank God for the apricot seeds.

I found out that I had CLL in Dec.2005 at the age of 42. We watched and waited until Feb 2009. I had 6 Rounds of Chemo 6 weeks apart and lost 18 inches of my colon from complications.I was good  for about a 18 months. I started feeling lumps again and went to see my Doctor.  I started rituxin for 4 weeks in a row on Fridays.Then it came back 3 months later had more teatment. Then 2 more times in six months.Then went in the hospital in July 2012 to have a stem cell transplant.This did not work very well and now I am getting lymphocyte cells to see if that will  get the ball rolling.I can start feeling lumps again and I get cells on Wednesday.If this does not work I need to have another stem cell transplant.It has been a rough road but it will work out.

NJA1963 said:

CLL

I found out that I had CLL in Dec.2005 at the age of 42. We watched and waited until Feb 2009. I had 6 Rounds of Chemo 6 weeks apart and lost 18 inches of my colon from complications.I was good  for about a 18 months. I started feeling lumps again and went to see my Doctor.  I started rituxin for 4 weeks in a row on Fridays.Then it came back 3 months later had more teatment. Then 2 more times in six months.Then went in the hospital in July 2012 to have a stem cell transplant.This did not work very well and now I am getting lymphocyte cells to see if that will  get the ball rolling.I can start feeling lumps again and I get cells on Wednesday.If this does not work I need to have another stem cell transplant.It has been a rough road but it will work out.

You seem pretty darn tuff.

I am almost 54 years old and have just been diagnosed with CLL.  I am concerned but have been keeping that to myself as my wife is so worried.  I don't know what stage I am at as I am to go for another test soon.  I thought I was too young to have this and thought I was alone in having it.  Apparently not, however.

I am grateful to have found this page as I now have some place I can get some background on it as well as talk frankly with others about it.

tscadron said:

To ChiefPayne

I also have a relatively new CLL diagnosis (May 2013), and know how unsettling that can be.  And I'm also on the younger side, just turned 50 in November.  It's important to ask every question you can think of, and talk things through with your doctor and people close to you.  But as you've probably already gleaned from this discussion board, you can live a long time with CLL, without it controlling your life.  After a rough and tumble month of worrying about the diagnosis, I'm feeling like myself again.  Just drinking more green tea, taking some vitamins (D3, fish oil, and vitamin C), and trying to maintain a super-healthy diet.  I don't know what the future will bring, but there are many treatment options out there, and many more on the horizon.  The hardest thing is waiting for test results so you know exactly what you're dealing with.  It will get better though!  Best,  Terri

My first post in this forum, which I found by chance, although I have been attempting to network, via various other internet forums, with other members of the club we'd rather not have joined!

Also trying to get my head around some of the medical verbiage and endless abbreviations, in the hope of being better-informed.

Looking back at my previous blood test results, I have probably been 'brewing' CLL for at least 4 years, but was only diagnosed about 18 months ago(Feb2012), by which time my leococyte count had crept up to 17.90 ('Normal' range is 4 to 11) and my general practioner noticed it and sent me to what has turned-out to be a lovely young hem/onc, trained in Barcelona by one of the World's most highly-regarded CLL experts.

I have had no significant symptoms ... put my occasional fatigue down to the weather, my age, and innate laziness!

Latest Leuc count, end-June 2013 was 18.44 (DOWN, slightly, from the previous 6-monthly level).

When I was diagnosed, it was no surprise, as I'd figured it out for myself as the most likely thing.

After some discussion, I said to Dr Gomez "So I'll probably die of something else before this kills me?" ... she, very wisely, I think, said"I cannot possibly say that ... this condition takes SO many different forms, and it could suddenly get worse. We just have to keep watching it".

I am very grateful that she did not give me any such possibly false hope. This discussion, and all the others I read make it clear that we currently do not know enough about CLL to be able to make such a bold, and IMO, rather irresponsible, statement. SOME people may prefer to have the re-assurance that it could give ... at my age (73) I prefer the truth, and to draw my own conclusions.

And the truth is that no-one knows the life expectancy of a Stage 0 CLL patient ... no two bodies are the same, and the range of difference is HUGE.

At diagnosis, my MEDIAN survival expectancy was about 12 years ... but such statistics mean virtually nothing to one individual (I recommend reading an article called "The Median is NOT The Message" ... Google it; it puts such stats into perspective ! ). I aim to be one of those who fall on the right-hand side of the curve!!

I am fortunate in having inherited some of my mother's pragmatism and positivity. I try to enjoy every day, to eat well, without being obsessive about it, and I take rather less exercise than I should. And I would discuss with Dr Gomez any 'cures' that I see recommended on the 'net and might consider worth trying. Beyond that "Que Sera, Sera!"

Developments in treatment by 'conventional medicine' are coming thick and fast these days, and I hope that, should the time arrive when I need treatment, some of them will have progressed past the trial stages where they are currently. 

Apologies for being rather long-winded ... I wish you all to be as well as you can be.

Roger

Hello everyone,

May the almighty bless us all with a healthy & life long remission.

Is there anyone willing to share his personal experience ? Actually we all are sitting on the same boat and are slowly travelling to the same destination with or without CLL.

Please accept my kind regards from Sweden.

hollymay7 said:

scared
I am just wondering what everyone's wbc count was when they found out they had leukemia. My wbc a year ago was 12.3 and now its 14.4. Should I be worried? Also my differential was normal except my absolute grans were high, 9.0.

Other concerns

My WBC was at 19 when First tested and in May 2013 confirmed the Cll Diagnosis. In June I had a CT scan to Stage the Cll. The scans were generally Good for the Lymph nodes, BUT there was a Brain lesion. It is in a location where Biopsy is virtually impossible due to it being intermingled with Brain Blood vessels so the risk is too great. That being said They are saying it is NOT related to the CLL so it is NOT metastatic. 3 MRI's later I am feeling more confident it is just another BUMP to monitor.

I understand where being SCARED comes into play, but after a few months of sweating it out, I basically said to Hell with it and am trying to move on. I have too much to do and can no longer afford the time to worry. There is a whole world to discover. I have 58 years behind me and in all that time have not seen enough of this big ball we live on so Onward. I only hope I can still get the travel insurance I may need. Time will take care of the rest.