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Life expectancy of Chronic Lymphocytic Leukemia
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Nov 05, 2010 - 2:21 pm
Does anyone know of anyone who lived for more than 20 years with chronic lymphocytic leukemia? I am interested to know Thanks Richsterr |
Joined: Aug 2009
I am 64 and was diagnosed about a year ago I am stage 0 and was told if things go as they are I will die of old age before CLL bothers me I am being treated at Sloan-Kettering in Sleppy Hollow NY My wife life was saved at Sloan in NYC stage 3 Esophigal cancer GREAT PEOPLE THERE
Joined: Feb 2011
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.
Joined: Apr 2011
I agree with you! I will do all I can to live a long life but even if I don't get the long life that I hope for then I will enjoy all that I do have.
Good luck to you!
Joined: Feb 2013
my husband have cll he is currently in the hospital in trinidad he was dignose two year s ago he was using geliv tablet but i stop responding so now he had infection on hislung, high fever, weakness, shortness of breah. some tie i dooes be afraid bu is god faith and belive that is keeping me rght now.........i was him to live as long as possible .... and very good some people goes 12year and still going.... god is good.
Joined: Feb 2013
my husband have cll he is currently in the hospital in trinidad he was dignose two year s ago he was using geliv tablet but i stop responding so now he had infection on hislung, high fever, weakness, shortness of breah. some tie i dooes be afraid bu is god faith and belive that is keeping me rght now.........i was him to live as long as possible .... and very good he went 12year and still going.... god is good.
Joined: May 2011
My husband's dr told him the same thing - that the chances were very good that something else would kill him, not the CLL.
My husband was diagnosed about 4.5 years ago - we met two years ago and have been married for almost a year and a half. He will begin his first round of chemo in two weeks. We are both a little anxious about it, but he has a very positive attitude and has many positives in his corner: his age (51), his good health, his FISH results. He says he is ready to fight.
I found this site just today and am happy to have a place to come for support/research.
Joined: Jan 2011
My husband was diagnosed in 1996. Started intravenous antibodies 10/08 .. IV-IgG (intravenous immune globulin treatment). Now 01/11 he is not feeling that energetic so 02/11 is meeting with his Oncologist to see if chemo is needed. This is a huge step for us .. that is why I sought out this forum. Didn't know it existed. Hope to find help and perhaps solace here in the future.
I will tell you however .. that until 2 weeks ago .. most people would have told you he was the picture of health and vigor at age 69! Of course I watch him like a hawk .. AND the reason he had to go on the IV-IgG was the result of 7 infections in 11 months .. sinus infections or urinary infections. I do take really good care of him with LOTS of rest, vitamins and as little stress as possible .. with lots of fun and love!
Joined: Jul 2009
My husband is now 80 years old, he was diagnosed in 1991, at age 61 he is in remission and is healthy and happy at the present time.
Joined: Apr 2011
My husband was diagnosed with Skin Cancer in 9/07 and CLL in 2008. I was told that he will die of old age. No treatment needed, so I relaxed. In 3/2008 he was rushed to the hospital with very high fever his white blood cells were off the chart. He survived the crisis. Went through radiation and chemo. His radiation oncologist told me that the combination of skin cancer and CLL is very hard to treat.His cancer spread through out his body with the speed of light. Buddy died two years later in 2/10.
Joined: Apr 2011
I was diagnosed in 5/06 and have only just started chemo. My 1st treatment was in April and I expect to have 4 - 6 treatments. I am feeling great at this time and I plan to live a long life.
Joined: May 2011
Hi
I don't know what the life expentancy is for CLL. I was diagnosed about 2 years ago.
My white count was pretty consistant at 15k every 6 months and only 3 months ago was my platelet count dropping. My Oncologist recommended Chemo and I start it next week (14th of May).
I was told what most have heard that something else (like old age) would likely kill me before the CLL does but now I am pretty scared. I am not in the greatest health as it is and the regiment of meds is going to tear my body up.
Who knows what is going to happen. As the ad says on TV.... There is no toe-tag telling me when I am going to die. Not much of an answer to the question unfortunately- just needed to throw my worry and idea into the fray.
Joined: Jul 2011
My husband was diagnosed at age 50 with the aggressive version of CLL. He underwent RCF chemo right away. Blood work was a mess - white count over 56K, platelets dropping, lymph nodes swollen all over - that's how he found it... bone marrow messed up, too. He did 4 days of chemo every 4 weeks for 6 months and everything got smashed down and he enjoyed the past 4 years of quiet, although his platelets never came back over 120. This past week he was sick and wound up in the hospital over night. It's back... platelets were 89 when entered hospital and 77 the next day. blood count of 19k. Did a bone marrow and we'll find out next plans on the 12th of this month.
Strange thing is, his older sister also has CLL. Has been treating on and off for over 15 years. It's lousy but attitude is critical. Hang in there!
Joined: Jul 2011
My mother was diagnosed with CLL when she was 62 and survived for 17 years. Many years were good, many times they included fighting the cancer in and out of the hospital. She took her first trip to Europe at age 71, 9 years into her CLL. Be wary of any infections, always tell all your doctors that you have this, they won't just "know", you need to tell them, and avoid infections, i.e., don't put yourself at risk by being around people who have the flu or other contagious diseases. Get the best doctor you possibly can-it makes a difference. Best wishes to all.
Joined: Dec 2011
Wish you had gotten lots of positive feedback. I was diagnosed after a heart attack in 2005. My first onc said I would die from my heart first. Needless to say he is no longer my oncologist. I have a wonderful kind man now, but he does have me worried because he is worried about platelet counts starting to drop. Sigh. He wants to see me in ten weeks instead of the usual 3 months. Not much different really. What is two weeks anyway. Just a blink of time. But enough change to give me cause to stop and wonder.
I've been studying alternative treatments. Currently using turmeric and some of the Budwig protocol. Brought lymph nodes down. Doc didn't find any swollen ones yesterday. Now need to figure out what I can do to improve red blood cells and platelets.
Worry today has caused swollen nodes in my neck this evening. Coincidence? As they say attitude is everything.
Do hope your situation or that of your loved one is one of those that is a long, long time watch and wait.
Joined: Mar 2012
I'm replying to:Does anyone know of anyone who lived for more than 20 years with CLL? My mom was diagnosed W/CLL when she was 60 years of age... She is now 86... that's 26 years. And I hope she'll be with us for much longer!!!
Joined: Jan 2012
Has your mom ever required treatment?
Joined: Dec 2011
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!
Joined: May 2012
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.
Joined: May 2012
I was diagnosed 3 years ago with CLL after I found that the Red Cross would not accept a blood donation from me because I was "anemic" (I was 54 years old at the time). My WBC at diagnosis was about 10k. It has been creeping up ever since... doubled to 20k after the first year, about 32k the second year and now 41k at the end of the third year. I see the oncologist once every 6 months and have no overt symptoms I have noticed and am on no medication. From what I have read, you might have some cause for concern if your WBC doubled in 2 months but your increase seems to be even slower than mine.
Like many people, I was told I would probably die of natural causes before CLL-related issues would get bad enough to be a concern if I take care of myself (positive mental attitude, reduce stress, eat right, stay active). The results of my FISH test were the best that you can hope for as I had no sign of mutation/cloning of cells. In my case I guess the condition is about benign as it can be although I do show a steady but slow increase in my WBC.
Steve
Joined: May 2012
I was diagnosed 3 years ago with CLL after I found that the Red Cross would not accept a blood donation from me because I was "anemic" (I was 54 years old at the time). My WBC at diagnosis was about 10k. It has been creeping up ever since... doubled to 20k after the first year, about 32k the second year and now 41k at the end of the third year. I see the oncologist once every 6 months and have no overt symptoms I have noticed and am on no medication. From what I have read, you might have some cause for concern if your WBC doubled in 2 months but your increase seems to be even slower than mine.
Like many people, I was told I would probably die of natural causes before CLL-related issues would get bad enough to be a concern if I take care of myself (positive mental attitude, reduce stress, eat right, stay active). The results of my FISH test were the best that you can hope for as I had no sign of mutation/cloning of cells. In my case I guess the condition is about benign as it can be although I do show a steady but slow increase in my WBC.
Steve
Joined: Jun 2012
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
Joined: Nov 2012
I was diagnosed 5 years ago -stage 3. understand that Stage 0 can live for years and even die of something else. just watch for unexplained fatigue and weakness. Pneumonia can result from impacted immune system - watch for trouble breathing - not necessarily from result of a cold. I found that blood test results depressed me more than helped - I'd suggest blood tests at longer intervals than 3 months. Watch my diet, weight and exercise 45 minutes a day. If I find myself more tired than normal I know that my red blood count is decreasing. I take 10 mg of Prednisone daily to keep my energy level up.
Joined: Sep 2012
Mine was 12.5 when I was diagnosed. I was having some blood work for some minor surgery when I learned. During the surgury, a lymph node was removed and testing revealed that I was stage III. That was in 1999. No evidence of CLL today.
Joined: Sep 2012
Mine was 12.5 when I was diagnosed. I was having some blood work for some minor surgery when I learned. During the surgury, a lymph node was removed and testing revealed that I was stage III. That was in 1999. No evidence of CLL today.
Joined: Aug 2012
My brother has lived 17 years with CLL. First diagnosed in 1995 (stage 1), Stage II (2000), Stage III (around 2005), and Stage IV (2010). He was diagnosed when in his 40’s. As some have mentioned, shortly after his diagnosis, he changed his diet completely and still maintains a very strict regimen.
Joined: Sep 2012
Dear give-thanks,
Please tell me the diet a newly-diagnosed CLL patient should follow.
Thanks so much.
Fretnot
Joined: Aug 2012
Greetings Richsterr:
Just this evening I registered as a new nember, and saw your post.
I posted my story/bio. Perhaps you want to read it & then reply.
Regards, Glen
Joined: Nov 2012
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.
Joined: Nov 2012
About 6 months ago I started using Prednisone when feeling tired. at first it was from a prescription that I had from a previous course of treatments,then when I told my oncologist she agreed that I could easily take 10mg. a day if it made me feel better. Occasionally I increase that to 25mg if I start feeling really tired - it helps almost immediately. Look up the side effects of Prednisone on the Internet, then decide if it makes sense for you.
Joined: Feb 2013
Hi Richsterr,
My father was diagnosed with CLL seven years ago. He has a PHD in nutrition and decided to go alternative instead of the mainstream chemo treatments. He is 70 years old and has a normal blood cell count. He took a product called CELLECT and now has no traces of cancer.
Joined: Jun 2012
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.
Joined: Feb 2013
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.