Life expectancy of Chronic Lymphocytic Leukemia

katemn 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!

ive just been diagnosed and am 8 on the ceel count of lymphocites i guess type B because im told teh type t will still fight infection

the fact that you hubby was doag nosed 1996 and its now 2016 i see you were on in 2011 so 15 year was amzing and a great support to me thnak you and you rhubby --hope you got on ok

well spent first weekend alone since diagnosis and had a terrible night because i read a cll page where it sadi 2 -3 years

so reading all the mens "success" with many years and treatmnets has bouyed me up again so keep posting guys it really does help

i read about positive menatl attiide and after the first two week of down ive kind of got on with it --took a sore throat and have a sore stomach which by body has seemed to fight off so immune working maybe at least a wee bit . i feel i can run up and down stairs and otherwsie only get small night sweats now and on diet can urinate properly after 2 years of a porblem my lymph gland have gone down in my groinds so --diet and positive do seem to be helping . i just got a scare last night so rereading your stuff on here today is great for me today i needed some reassurances thnaks to everyone as i see more positives than negatives (apologies for the positive but you know what i mean better than id thought ). i see lots of stuff about immunology curative rather than palliative treatmnet but roche dont seem to be doing much with the breakthrough by Dr fegan or fergan cardiff and a dundee hospital also i think a dr kim or kym - i guess these firm have to get money back but th ereseach was odne cardiff all they need to do is make it -- and donate it --light od day has arrived so up and at it but i guess ill get times like last night --thnaks again for your stories (reassn for saying men as supposed to women  one is that it seem for some reason women do better than us mend not any other reason no wish to offend any ladies ! i miss my sweet puddings though as i have given u all sugar as ive been told thats acid and help cancer survive -- has anyone had a go at milk thistle as a help to prevent more growth of cells --congratulations to the one who married after diagnosis and the gusy whose snow boarding well done your amzing people and hope to emulate you long termers --its not a club i wanted to join but you do give me hope bless you all

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.

My PCP didn't tell me about my increasing WBC count until it was around 21,000! This was in 2013. I got my prior blood tests and my WBC count started increasing in 2010 (age 59), and over the normal high occurred in August. I went to a hematologist/oncologist and was diagnosed with atypical CLL. Atypical due to an abnormal chromosome 12. I was on the "watch and wait" period until December of 2015. My WBC count was 317,000 and I was hospitalized for infection. It was either have chemo or die. I finally gave in and had 3 chemo treatments the end of December (2015). My WBC count went down to 2000 and the chemo wiped out my immune system. I have been hospitalized 5 more times for sepsis/infections, pneumonia, and cellulitis this year (2016). My H/O told me that I was starting to produce normal (non-cancerous) WBCs! I wear masks when going out to public places. The leukemia cells have spread to my lungs, but when necessary, the same chemo treatments should kill the cancer cells. I see my H/O in December. My doctors told me that I would die from infection before the leukemia would kill me. I am 65 years old now and feel good. Most days, I don't even think about having cancer! A diagnosis of any cancer is scary. I went through denial, anger, anxiety, wondering what I should do, etc. Then I came to acceptance. None of us are guaranteed tomorrow. Something else could take me out sooner. Just live each day as though it was your last one! Good luck hollymay7/scared! I hope I have helped others also.

Not twenty years, but 17 years. 

sealbeach67 said:

Since January I've given up

Since January I've given up the every 3 month blood test. Last blood test was March. That one was with the oncologist. I'm not going back to see him until next March. If I go then. I will however have blood work done in September as I'm set up for a physical with my MD. My number are holding steady or atl least in a range so if the oncologist is happy I'm happy not to be pricked anymore often that I have to be.

If my blood work next March is holding steady I won't have to see the oncologist either. So life is good. Nice to let those three month blood tests go!

I hope you like the new oncologist and all checks out for you. Take care and keep in touch.

Janlee

This is the most difficult thing about cancer- wanting to live when it can be so easy to just give up.  I have LDL cancer.  I had it in the fall of 2000.  The doctor did not diagnosed  until 2004.  It was rather funny because I KNEW that something was very wrong with me.  The doctor told me that I was eating too much.  He wanted me to go on a diet.  I told him that I do not eat a lot.  Then he told me that it was menopause.  I told him that I had that years ago.  This kept going on and I was getting fatter and fatter.  Then one day he decided to take a blood test.  He was sad and said I hate to tell you, but you may have leukemia.  I was very happy.  I said to myself, good now we can start working on this.  Before I knew that I was ill but I had to wait until the doctor was aware of it.  I had the bone marrow and the chemo.  My friend told me to take D3 vitamins and B12 vitamins.  I gradually got better and I am normal now.  Many years of my life were taken away by this disease.  Now I still have this chronic LDL, yet I do things.  I say I do things and that is great, you see I am 71 years old. 

Our mother has CLL. She was doing well and had a treatment Rotuxin in 11:16. Her counts were 11.6 now in February they had dropped to 7.8 and she got a lot not of blood 1 month later back to the Dr and now it is even lower 6.8. He ordered 2 pints of blood. We go back nextvwee but at 95 what to do? He mentioned her red blood cells were fractured I need to find a good source to read about this so we can speak intelligently with her Dr this Frida. Help, Thanks, Ruth 

one_lonely_stick said:

16 years

I was diagnosed in Sept 2001 I collapsed and didnt know why..  I was so weak..  I ended up in the VA Hospital and the doctors ran some tests and then sent me home...  A few days later they told me it might be CLL and I would need a bone byopsy.  I was in stage 0 but was told not to work in the medical field / EMS any longer...  I was fine for a few yeas although had boughts of fatigue.  I had another episode and they wanted to give me a tranfusion..  I refused becaust they are dangerous and if you have a reaction to someone elses blood you can die..  I watch my self but do not baby myself..  I work hard, mostly physical stuff like construction...  About 6 years ago and I think it was brought on by stress and maybe dehydration I ended up in bed, housebound for 2 weeks...  My spleen and liver had also enlarged and I was told I was stage 1...  Since then I have had many more physicals and have been told I am back to stage 0 but occationally I have major episode of fatigue..  I have also had 2 types on skin cancer but not melinoma.  They removed numerous spot on my face and back and then later a large one about the side of a nickle on my left side around the rib area...  So now it has been 16 years and I hope I will have 16 more...  I have not told many people in my family because even though I am the one with all the medical degrees they normally think they know more than I do and most of what they know isnt much...  I would like to think that my attitude towards work and my determination is what has gotten me this far..  I sometimes worry because the fatigue..  

Hi..I'be just been diagnosed with Cll stage 0.. that was discovered during a set of routine tests for total knee replacement surgery.  My oncologist said it would be fine to go ahead with the surgery. I work full time in a factory.. and also run a farm ( complete with getting my **** bucked off by a fat Paint Horse!). So, it is possible to continue to work full time? And, can you carry on with your other normal activities? 

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.

Do you mind me asking where you were treated in Toronto?

If I listened to survival times, I would be dead. I was diagnosed with CLL in August 2009. I had Rituxan, then 8 IVIG treatments. In June 2015, my Leukemia transformed into Lymphoma. I had tumers the size of cantelopes in my stomach. I started Rituxan, Bendamustine, and Neulasta treatments in August 2015. I was not expected to survive. I had problems with Bendamustine that most people don't. I was hospitalized 7 times for I nfections. 20 Ococologist I was refered to said I was too sick for treatment, and would not survive. Dr. Jeffrey C. Ward of Swedish Cancer IUnstitute in Edmonds, Washington was not afraid of the long odds. I survived 6 months of chemo. I went into complete remission. I am still standing. Don't lose hope. The scientist are making breakthroughs every day. I, have options if I go out of remissions. There was a time I had no options.

I was treated for ALL at the age of 42. Went through the total body irradication with massive doses of radiation and chemo, followed by the bone marrow transplant a year and one half later. I am now 62 years old with little or no side effects (knock on wood). I had a great team of doctors  and nurses at the Childrens University Hospital in Madison Wisconsin. I owe my life to them and will always be grateful. My older brother was a marrow match and he will always be my hero as well.