Life expectancy of Chronic Lymphocytic Leukemia
Comments
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CLL
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 THERE0 -
Hope this helps!
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!0 -
CLLkatemn said:Hope this helps!
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!
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.0 -
living with CLLrunabe said:CLL
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
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.0 -
was not so luckymsgenelle said:CLL
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.
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 2/10.0 -
lide expectancy
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.0 -
enjoy lifebobnkay 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 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!0 -
Life expectancyrunabe said:CLL
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
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.0 -
Diagnosed and need Chemo
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.0 -
aggressive versionCrinic_001 said:Diagnosed and need Chemo
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.
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!0 -
Life Expectancy of CLL
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.0 -
CLL life expectancy
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.0 -
life expectancy cllPartsman said:My mother has lived 26ears w/CLL
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!!!
Has your mom ever required treatment?0 -
Encouraging news.Partsman said:My mother has lived 26ears w/CLL
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!!!
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!0 -
scaredRagsgolf 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!
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, 9.0.0 -
White Blood Count and CLLhollymay7 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.
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.
Steve0 -
New CLL DiagnosisSteve1955 said:White Blood Count and CLL
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
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,
Don0 -
CLL diagnosis in 1995
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.0 -
I was 1st diagnosed with CLL, 09-1991
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, Glen0
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