Life expectancy of Chronic Lymphocytic Leukemia

iamnotivan said:

20 years since diagnosis

I was in my early -50s when CLL was discovered.  It did not become critcial for more than 18 years.  At that point, I entered a drug trial programme which was a kind of chemo in a pill which lasted 18 months.  It is meant to be a genteler treatment method with a hoped-for longer remission period.  I am now 70, very healthy and the remission has been about 13 months so far.   My blood counts are not pleasant to read, but I am healthy.  I suspect that the trial drug was effective, but not as much as they hoped.  But, the trials are the first and it will take years to adjust and analyze.

I would like to mention that I live I Toronto and despite all the horrible and false U.S. propaganda about hour healthcare system, my care has been with the finest physicians and professionals one could hope for in the most modern, complete and comfortable facilities.  In fact, the hospital I am treated at, is one of the top five cancer research facilities in the world.  In 18 months of appointments, I was overwhelmed with attention to every detail, had constant access to specialists if needed, and the only thing I ever paid for was $6.00 for periodic purchases of needles.  My original M.D. also said I would die of something else.  But now although  I doubt that, I don't really care what I die of.

Thanks for posting, iamnotivan.  It's heartening to hear that you went 18 years before you needed treatment.  I was diagnosed this year with CLL, at age 50, and am hoping to stay in remission for at least that long.  I know there are no guarantees, but if there's anything particular you've done to stay healthy, please do share with the rest of us.  My own plan, currently, is lots of exercise and a healthy diet (fruits, veggies, fish).  Basically, try to take care of myself. so I'm strong enough to withstand chemo, if and when I need it.  And by the way, I'm very impressed with the Canadian health care system.  My sister was a resident of Toronto for several years and underwent radiation for hard tumors there.  First rate.  We have lots of room for improvement in the United States.   

At the end of this month I will have been diagnosed with CLL 15 years, as a result of an unrelated pre-op exam.  I was 44 yo with a wbc of 12.9  Raising my 2 teenage boys on my own, I thought my world was falling apart and I was scared to death.  I got online (bad mistake) and read that the median life expectancy was ll-12 years.  I had a need to talk to someone who had a few years into this disease.  I was finally put in touch with a 70 yo. man who was a good source of information, though I asked to speak to someone more my age.  There didn't seem to be anyone for me at that time.  As I settled into my new reality, it became easier to cope with.  I made the decision to get the checkups and blood tests but otherwise live my life as if everything was normal, and to this day, that's what I do.  I have destressed my life as much as possible and I do think that helps tremendously.  Last month I had my yearly physical and my wbc was in the low 40's.  It's been what I feel is a very slow incline and I consider myself lucky to be in that mode.  I know there are many others that were much quicker to require treatment.  I wish I knew why.  All I can say is that I'm living with CLL on my terms.  I don't have any sort of special diet or take additional supplements of any sort.  The only problem I have that I do attribute to CLL is fatigue, but I have other issues that could contribute to that too.  My best advice is to destress your life ASAP and enjoy each day as it comes.

Note - I would be happy to chat with anyone with questions, concerns or just to talk things over.

Ragsgolf said:

Encouraging news.
When reading the posts, it seems that there are a great many paths our disease might take. It would be great to see a study done on the relationship of stress in one's life, or eating habits, or positive attitude prior to diagnosis or once diagnosis is made. Common sense would probably say that less stress, good nutrtion, and positive attitude would mean more years and less symptoms.

Lately my symptoms have decreased and counts are fairly steady without big increases. What is the difference? Perhaps the fact that I haven't been dwelling on the disease. Probably because I have been more concerned about my husband's cognitive decline and possibility of early onset Alzheimer's than about my CLL.

I still am as careful as I can be with diet, eating as much organic as possible and avoiding sugar and high fructose intake. I had been doing Budwig shakes, but with what I decided was way too much fruit and thus high fructose I have gone back to morning oatmeal. I do use coconut milk, cook with coconut oil, and use stevia. I also do not microwave any food. Don't own a microwave, in fact. Used to, though.

I should exercise, but since I teach full time, find I am too tired with energy only for fixing dinner, and barely that. After 47 years I should be retiring, but haven't been able to make that decision as yet. Teaching is much more stressful than it used to be. Obviously I haven't eliminated stress, have I?

I do so enjoy working with my students. And the prospects of less income is daunting. Given my CLL many think I am crazy. And maybe I am.

I see my onc this month for my 6 month checkup. Hopefully good news, but will see.

In the meantime, staying busy, trying not be preoccupied with negativity and making sure I get at least 7 hours of sleep. Humm, may not happen tonight if I don't sign off now! Goodnight!

Hello

I m 58 years old french man.

I have CLL too, discovered july 2012 (no symptomes no treatment).

Today my Lymphocyts are 53000/mm3 

I eat a budwig diet / paleo with no sugar and no carbohydrate.

It seems similar like your diet.

Could you tell me how are you today with this diet.

It will be very usefull and very jkind of you.

Thanks in advance.

Philippe ( from France) 

kat2e said:

Leukemia Label - Scary for Employers

I was diagnosed with CLL when I was 39 years old.  Most of the literature I have researched suggests that I was in the less than 1% that get it that young in life.  Perhaps it was due to the stress of watching my husband's health deteriorate over many years, his ultimate death, the fact that I was finishing a University degree and taking care of three small children.  Whatever the reason, I got it young.  However, I was also told that I would probably die of old age.  That was 11 years ago.  My white cell count did go up to 4x that of a "normal" count, but in recent years has started to go down.

I have been working for the past 10 years without anyone at work knowing that I had it, as I only saw my oncologist yearly to monitor the bloodwork.  I have never needed treatment thus far and have excellent health aside from an abnormal white cell count.

Here's my problem....due to lay offs, I lost my job recently and applied internationally, as I have international experience.  I was offered a great job overseas, but when I disclosed my CLL (I had to do routine medical tests, including bloodwork), they dropped me.  Even the doctor's letter stating that I was stable and did not require treatment, unaffected their decision.

I am only 50 years old and need to keep working.  Unfortunately, if I cannot secure a position soon, I will be forced to burn through my savings and potentially lose my home.  I wish there was another label for this type of leukemia that would not scare away potential employers.

Has anyone else encountered this kind of phobia from the general public?

 

I was diagnosed Dec. 7, 2010. I was 30 years young and my wife just gave birth to our 4th. I was a power lifter and heavily involved in sports. Over the past 2 years before I was diagnosed I was losing energy, which I thought to the stresses for work life, kids and play. I had become ill with food posing and went to an Urgent care(I had no regular doctor at the time) and found out my body was fighting something. 4 weeks later FCR for 6 rounds. The treatment wasn’t so bad but my blood counts took their sweet time coming back. This February is the first time I have been in normal range. I am now working full time again and enjoy all my time here with family and friends. My wife as asked my doctors how long should I be in the clear and how long of a life expectancy and they really don’t know because of my age. Cancer isn’t going to win, something else will but not cancer.

I was diagnosed at age 38 and was ironically told by the first oncologist I saw that I had 3-5 years.  I then made appointments with 5 others who all had different treatment options and prognosis.  I finally found Michael Keating at MD Anderson and made sure my local oncologist would work closely with him.  I fly to Houston twice a year for check ups and clinical trial discussions.

I'm not sure if its the 15 years that's taken its toll, my parents health decline, my husband's emotional issues, or the cancer, but I'm beginning to feel fatigued this year for the first time.  I see other 53 year olds look and feel a lot younger than me, but I also think the stress in my life has contributed to my fatigue. I'm ZAP-70 negative so the cancer is growing slowly.  But its starting to show its toll on my kidneys, liver and gut.  My issue has been with infections.  I have trouble fighting them as my immunoglobins are in the tank.  I get IVIG once or twice a year at $6K a pop and then rituxan and some other agent (leukine, salumendrol) every three years.  I haven't missed a day of work and I work 60 hours a week (my husband hasn't been able to find a job for 14, so this also contributes to the stress financially).  My husband and I have changed to a vegetarian lifestyle and we eat a lot of broccoli, kale, spinach, and watercress per my doctor's recommendation.  Soups, salads, and mixed into quinuoa or beans and rice.  We also exercise daily and that has helped too.  We like Dr. Andrew Weill's anti-inflamatory lifestyle and we also enjoyed Joe Cross' juicing video on netflix, but we couldn't make it past a week on the juicing.  Luckily, my huband used all the left over bulk to make yummy soups.  So while I'm not at 20 yet, I know I'll make it.

bbe said:

15 years

At the end of this month I will have been diagnosed with CLL 15 years, as a result of an unrelated pre-op exam.  I was 44 yo with a wbc of 12.9  Raising my 2 teenage boys on my own, I thought my world was falling apart and I was scared to death.  I got online (bad mistake) and read that the median life expectancy was ll-12 years.  I had a need to talk to someone who had a few years into this disease.  I was finally put in touch with a 70 yo. man who was a good source of information, though I asked to speak to someone more my age.  There didn't seem to be anyone for me at that time.  As I settled into my new reality, it became easier to cope with.  I made the decision to get the checkups and blood tests but otherwise live my life as if everything was normal, and to this day, that's what I do.  I have destressed my life as much as possible and I do think that helps tremendously.  Last month I had my yearly physical and my wbc was in the low 40's.  It's been what I feel is a very slow incline and I consider myself lucky to be in that mode.  I know there are many others that were much quicker to require treatment.  I wish I knew why.  All I can say is that I'm living with CLL on my terms.  I don't have any sort of special diet or take additional supplements of any sort.  The only problem I have that I do attribute to CLL is fatigue, but I have other issues that could contribute to that too.  My best advice is to destress your life ASAP and enjoy each day as it comes.

Note - I would be happy to chat with anyone with questions, concerns or just to talk things over.

 I was told 3 days ago that I have CLL and I've gone through the whole range of Kubler-Ross stages back and forth the whole time.   I'm 67 and hoped to be a very elderly lady who died a natural death (hopefully in my sleep---lol)    I'm scared what might happen in the future even though I do have a strong faith, and always said I'm not scared to die.   I would like to be around for grandchildren  to grow up and after reading your post I feel more at peace.  

 I'm very overweight so this sure is a wake up call to start eating sensibly.   I have a few other issues that hinder me doing exercise, howeveer a friend has suggested I  joini her senior's water fit class.

I hope you're still doing well.   

Joe Nash said:

Life with CLL

CLL is one of those cancers that's hard to put "how long might I have" to it. Most of us with cll, not all, find out they have cll later in life. I was 41 and stage 4 when it was found. I was in remission intil last month. For almost 5 years. To many variables to put how long might I have to it. Prayer and a close walk with Christ are the things I've found to make it day to day. I wish you the best. Prayers my friend. 

Always interesting to hear from other cll patients.  I was diagnosed at 66 this year, after retirement.  My heart goes out to you and others who struggle with this cancer so young.  It has slowed me down.  I, too, am in stage 4, possibly near chemo.  This strange disease is so different for many of us in its sequence.  But I think the symptoms are fairly consistent with most of us, fatigue and feeling bad a lot for me.  Its good to write to someone who is sharing this scary walk.  Best wishes for your next treatment.

bobnkay said:

living with CLL
Hi: I am 80 years old and have been living with CLL for 12 years. It is a wait and see kind of cancer and my feeling was that I was not going to worry about something I couldn't do anything about. So I enjoyed these years and have been doing pretty good so far. I had a treatment of ritaxin/bendamustin in 2008 and showed good blood tests for 18 months. I repeated the treatment for 4 sessions in 2010 and again showed good blood tests and CAT scans. However, now I have a lumph node in the chest that developed into a Large B Cell lymphoma and am receiving R Epoch treatment. I am told this is a very curable cancer. My advise to you - enjoy your life,live it to the fullest, and if the CLL needs treatment, by all means get it. Until then, good luck and God Bless you.

I am 68, still practicing law and enjoy it, ran the NY Marathon 5 years ago, love to fish and have a great family.  Just diagnosed with CLL because I mentioned that I have a "bump" in my neck during an annual physical.  I was diagnosed with low grade CLL and "wait and see" treatment.  Just had my CT on Friday and will see the doctor tomorrow.  I am afraid and I am still in shock.  I an so uninformed about the details and I am looking for a life raft and a source of encouragement.  You are that for me today.  Please let me know how you are doing now.  God Bless you, I really hope you respond with some good news about you.  

Monkeyfish said:

Thank you.

I am 68, still practicing law and enjoy it, ran the NY Marathon 5 years ago, love to fish and have a great family.  Just diagnosed with CLL because I mentioned that I have a "bump" in my neck during an annual physical.  I was diagnosed with low grade CLL and "wait and see" treatment.  Just had my CT on Friday and will see the doctor tomorrow.  I am afraid and I am still in shock.  I an so uninformed about the details and I am looking for a life raft and a source of encouragement.  You are that for me today.  Please let me know how you are doing now.  God Bless you, I really hope you respond with some good news about you.  

 

 

how are you doing now? I have myelofibrosis.

ThatGirl1961 said:

I'm on 15 and expect to make it past 20

I was diagnosed at age 38 and was ironically told by the first oncologist I saw that I had 3-5 years.  I then made appointments with 5 others who all had different treatment options and prognosis.  I finally found Michael Keating at MD Anderson and made sure my local oncologist would work closely with him.  I fly to Houston twice a year for check ups and clinical trial discussions.

I'm not sure if its the 15 years that's taken its toll, my parents health decline, my husband's emotional issues, or the cancer, but I'm beginning to feel fatigued this year for the first time.  I see other 53 year olds look and feel a lot younger than me, but I also think the stress in my life has contributed to my fatigue. I'm ZAP-70 negative so the cancer is growing slowly.  But its starting to show its toll on my kidneys, liver and gut.  My issue has been with infections.  I have trouble fighting them as my immunoglobins are in the tank.  I get IVIG once or twice a year at $6K a pop and then rituxan and some other agent (leukine, salumendrol) every three years.  I haven't missed a day of work and I work 60 hours a week (my husband hasn't been able to find a job for 14, so this also contributes to the stress financially).  My husband and I have changed to a vegetarian lifestyle and we eat a lot of broccoli, kale, spinach, and watercress per my doctor's recommendation.  Soups, salads, and mixed into quinuoa or beans and rice.  We also exercise daily and that has helped too.  We like Dr. Andrew Weill's anti-inflamatory lifestyle and we also enjoyed Joe Cross' juicing video on netflix, but we couldn't make it past a week on the juicing.  Luckily, my huband used all the left over bulk to make yummy soups.  So while I'm not at 20 yet, I know I'll make it.

best of luck to you and having done 15 years is amzing --i hope i can do as well -i have also gone alkaline dite and feel it has helped

ill look out for you and say a wee prayer for you all