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Life expectancy of Chronic Lymphocytic Leukemia

Richsterr
Posts: 36
Joined: Aug 2010

Does anyone know of anyone who lived for more than 20 years with chronic lymphocytic leukemia? I am interested to know

Thanks Richsterr

runabe
Posts: 53
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

bobnkay
Posts: 21
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.

stopthemadness
Posts: 2
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!

Jesus saves
Posts: 1
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. 

jlbean59
Posts: 5
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.

katemn
Posts: 1
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!

msgenelle
Posts: 3
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.

lucy07
Posts: 48
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.

stopthemadness
Posts: 2
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.

Crinic_001
Posts: 2
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.

familyfarm
Posts: 1
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!

Ruthmarie
Posts: 1
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.

Ragsgolf
Posts: 6
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.

Partsman
Posts: 1
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!!!

MCR1967
Posts: 6
Joined: Jan 2012

Has your mom ever required treatment?

Ragsgolf
Posts: 6
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!

hollymay7
Posts: 1
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.

Steve1955
Posts: 1
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

dcpchief's picture
dcpchief
Posts: 2
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

Canada10
Posts: 5
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.

srb1956
Posts: 7
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.

srb1956
Posts: 7
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.

Mistysbud
Posts: 1
Joined: Nov 2013

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.

 

 

phiphiminux
Posts: 1
Joined: Jan 2014

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) 

 

give_thanks
Posts: 1
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.

Fretnot
Posts: 1
Joined: Sep 2012

Dear give-thanks,
Please tell me the diet a newly-diagnosed CLL patient should follow.
Thanks so much.
Fretnot

Highlander56
Posts: 3
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

cllgal
Posts: 1
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.

Canada10
Posts: 5
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.

sneekers44
Posts: 1
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. 

nharmon
Posts: 2
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.

Mistowski
Posts: 1
Joined: Nov 2013

My spouse has cll since 2010. Currently undergoing 2nd round of chemo. First was in 2010 and now the 2nd round. He is feeling horrible and it has been 3 weeks since his first infusion of rituxin. Sorry if I spelled it incorrectly.

 

question is where are you getting apricot seeds. 

NJA1963's picture
NJA1963
Posts: 2
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.

jpfreed
Posts: 2
Joined: Jun 2013

You seem pretty darn tuff.

daved
Posts: 1
Joined: Aug 2013

I am just getting to that stage. Had 4 chemo treatments and my blood work dropped way below levels. Now 7 weeks later my glands are starting to gain size rapidly.  We're just getting everything ready for bone marrow transplant to hopefully start mid Oct. I was diagnosed July 2010 at 50, 32k wbc and last nov (2 and a half years after) i was 182k for wbc. Chemo hasn't worked for me as remission was weeks. I am in Toronto Canada, and luckily on clinical trials so my onc can mix up different options.  Its been a tough 2013, but am hoping it finishes well. Good luck to you.

 

jpfreed
Posts: 2
Joined: Jun 2013

My oncologist in Fl says I will die from something else not the cll. From what I have been reading, the doctor is wrong. treated 2 years ago with chemo and now it is back.

Your opinion??

Thanks.

JP Freed

Chiefpayne
Posts: 3
Joined: Aug 2013

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.

Chiefpayne
Posts: 3
Joined: Aug 2013

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
Posts: 9
Joined: Jun 2013

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

RogerB40uk
Posts: 5
Joined: Aug 2013

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

 

chandra51
Posts: 1
Joined: Aug 2013

 

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.

iamnotivan
Posts: 1
Joined: Nov 2013

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.

tscadron
Posts: 9
Joined: Jun 2013

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.   

kat2e
Posts: 1
Joined: Dec 2013

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?

 

JoshuaMurray1980
Posts: 1
Joined: Jul 2014

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.

 

ThatGirl1961
Posts: 3
Joined: Aug 2014

I was fired from a job when they found out I had leukemia.  I didn't tell them.  They found out from an employee from my old job when my boss violated my HIPPA rights and sent a message out to the entire organization.  Ironically, he was the VP of HR and should have known HIPPA.  I didn't want to be known as the woman with cancer, so I left on my own accord ( a big mistake).  I took the new position on the other side of the country and the day they found out, I was asked to pack up the office and go (9 mos into the job).  Since I live in a "right to work" state (aka righ to fire without cause state), they asked me to leave.  I spoke with an attorney who said that the only money I could get was a contract buy out (which they offered and I took so I could continue getting healthcare).  I now work on my own as a consultant making 1/3 of what I used to make.  My husband hasn't worked in 14 years, so financially we are incredibly stressed.  Our kids are teens.  I have no idea how we are going to pay for college.  We're barely making it work on the bare necessities (food, clothing and shelter...and of course internet, so I can work).  I've been doing my own thing for 6 years now.  Thank goodness for Obamacare because it really saved our life.  We may still have to declare bankruptcy.  I think this should be a legistlative agenda issue for ACS or LLS.  I'm happy to put it forward.  I used to be a board member on LLS, but I thought I was the only person in this boat.  Thanks for sharing kat.

bbe
Posts: 3
Joined: Jul 2011

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.

sealbeach67
Posts: 4
Joined: Nov 2013

This is to bbe

 I was diagnosed May, 2012, at the age of 63. At that time my count was 12.6. My count has continued to creep up and is now 18. I had seen an Oncologist at Johns Hopkin last year when my count was lower. However now my medical doctor has suggested I make an appointment with the oncologist for a follow up. I am curious, is there a number when the doctors go "oh" lets have a closer look. I don't have any thing else going on other than numbers. I have blood work every three months generally. Sometimes more often, depending on what the doctor wants. But no matter how often I have blood work it's always higher than the last time. So I'm thinking no more blood tests might be the answer. Ha ha.

Knowing you were diagnosed 15 years ago and no treatments and have a count of 40 is encouraging.

bbe
Posts: 3
Joined: Jul 2011

Hi sealbeach - I agree to both satements.  Encouraging, and less blood tests.  :)  Every 3 months would freak me out.  My veins aren't happy to give so less is better as far as I'm concerned.  Speaking for myself only . . . . I have 2 blood tests a year.  From what I was told, the counts can fluctuate.  Yes, my numbers have gradually increased, but there have been times it's gone down and then back up the next time.  That's fine with me.

My guess is that since your diagnosis is still fairly new, they want to track the numbers and get a sense of how fast or slow it progresses.  I'll be watching for updates from you too if you decide to share it here.  :)

Do you have an oncologist that you see on a regular basis, aside from your visits to your MD?  I was set up to see my oncologist twice a year at first, but as the years went by I made the decision to see him only once a year, with his permission.  It felt like a waste of our time.  Now it's been over a year since I've seen him and I'm actually seeing a new oncologist today.  (the previous doc is too far away)  I'm anxious to see him and see where I'm sitting at this point.  I have no clue what "stage" I'm in and am also curious to hear how things are going from the perspective of another doctor.  I'll share that news with you too when I get back.

sealbeach67
Posts: 4
Joined: Nov 2013

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

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