“I was told
I had CLL in October 1992 when I was 51 years old. I was told the statistics of the condition and proceeded to get my affairs in order.
Yesterday was my annual review at the hematologist (same one all along) and my white count was about the same as 18 years ago with continuing small drifts from normal in my red count, hematocrit and hemoglobin.
I have posted my ‘progress’ here for several years, in part to brag but mainly to encourage newly diagnosed CLL’ers that the C can really mean chronic.”
“The little storm
cloud that follows us around may dampen us on occasion, but for the large majority of us, the sun can still shine through.
Actually at 10 years post-CLL diagnosis, I'm in far better health now than I was pre-diagnosis. Just drop all the bad habits and replace them with a good diet, exercise, stress reduction and laughter.”
“Welcome to this
very exclusive club that nobody wants to join. I have been very fortunate to have the indolent variety, but doctors did not know there was an indolent variety when I was diagnosed 19 years ago.
I haven't done anything special. I toyed with a macrobiotic diet but couldn't follow it, tried the Essiac tea (my WBC rose!), tried green tea (didn't see any difference).”
"I was diagnosed
with CLL at 61 with only a slightly above-normal lymphocyte count, but with bronchitis and a high CD38+ marker. My oncologist at that time hinted at early treatment. A FISH panel showed the dreaded 17p chromosome deletion and an inactive TP53 gene. That was almost six years ago.
My FISH results and my reading led me to believe I was destined for a poor response to treatment and short survival, but it hasn’t been true for me. My blood tests have remained stable and I have had no B symptoms. My hematologist told me recently I may never need treatment. He reminded me that these studies show group trends, not individuals, and that he has seen this happen before.
I feel very blessed to not only be among the fortunate ones, but to now live each day more simply – and with more meaning and purpose. I often find myself thankful for my diagnosis."
“I have been
offline for a couple of years while enjoying a nice little 6-year hiatus from all this CLL stuff, and I presently feel fine. Wow, I have made it 18 years since my 1992 diagnosis!!! Gotta love it.”
“I have had
CLL for 18 years. My white count has climbed slowly and is now about 102,000, and I have an enlarged spleen and lymph nodes. I have had no treatment for CLL, but I do take medication daily for the fatigue.”
“My advice to
the newly diagnosed, while still in watch and wait, would be to spend a few weeks finding out as much as possible about the disease, then find a doctor they trust and try to forget about CLL until they have to make a decision about treatment. Try to enjoy every minute, and not focus too much on CLL.
Diagnosed at 47 – now nearly 12 years later – three weddings, five grandchildren since then.”
"I was so excited
to read about all the people with CLL for 20, 25, 28 years. My diagnosis was in December 1988 (23 years ago) and I am still in watch and wait"
“Two days ago,
on my way to Dana Farber Cancer Institute in Boston, I stopped at a lovely pond and watched goslings following their parents around the shore and in the water. Without my CLL, I would not have been there to have that fun.
I'm sure there are good things that CLL brings many of us – the friends who call to see how we are, the time we have to watch the trees leafing. I wish other people with CLL would write to the list about the good experiences CLL has brought to them.”
“While I would
give almost anything to be free of CLL, it has made my life better in many ways. Since diagnosis, I appreciate every day as much as I can and kiss my kids to bed every night. I no longer live in a world where 'life drags on at its dreary pace' but rather one where every day is a gift. I no longer sweat the small stuff, and I no longer let mean people get under my skin.
One day I was helping my kids get dressed in the locker room for our pool. A father next to me was scolding his children because they had apparently misplaced his shampoo. One of my kids crawled into my arms for comfort. I felt so happy at that moment, yet I felt sad for the other father. In sickness, I have learned how much parenthood is a blessing. This father next to me had three healthy children and would probably live a long life without much effort. Because he had so much, he could see so little – he had learned to take so much in life for granted. So here's to unlearning!”
“As trite as
it may sound, I do enjoy every day, and am much more grounded in the present now.”
"I was diagnosed
in my late 40s, in 1995. And here I am, more than 15 years later, still enjoying life each day. Well, most days – some days I'm a real grump. But that's just me."
“I was diagnosed
in 1995 with a white count of 45. My counts climbed steadily for five years, and my doctor started to talk treatment. The count was 98 in April 1999. Then the count dropped steadily over the last 10 years to practically zero (actually my count is now 6.3). I have never had treatment and am enjoying very good health.”
“It seems that
the various staging levels are less relevant than the patient's own set of lab trends and size of nodes, especially spleen enlargement and other issues that limit types of treatment. I was diagnosed at age 59, now 14 years later am considering first specific treatment.”
“I was diagnosed
in 1996 at age 48 and had treatment in 2003. I am very happy to say that I am still in remission! Additionally, my health has continued to be good, and I don't even get colds. I’m now 64 and still running about 20 miles a week! I wish everyone could have the positive results I have experienced.”
"When I was
first diagnosed with CLL (as a result of a routine physical at age 61, without any symptoms) I started down the same path as every other newly diagnosed CLL patient. Fear, anger, the urge to do something, and great uncertainty about my future were the dominant themes.
I wrote a short “Dear Family” note telling them about my diagnosis and the early stage of the disease. The responses were positively overwhelming. The outpouring of love and the offers to help were unbelievable.
I am not in this alone. I have a truly renewed lease on life and a greater appreciation for every day that I spend surrounded and supported by wonderful family and friends. Love is the best medicine."
“When I was
diagnosed in 1993 at the age of 50, I think the average life expectancy at that time was 7 or 8 years. Here it is 17 1/2 years later, and I'm still here!
We never know how things are going to go, as hard as we might try to figure it out. During those years I've managed to reach the ripe old age of 68 (so far), I've been blessed with two more grandchildren (three total) and saw my oldest grandchild graduate from high school. I've lived long enough to see my daughter happily settled into a second marriage, and my husband and I are now enjoying his retirement.
They didn't have all the tests back then that they do now, but they did come up with better treatments. So, my advice to you is to live one day at a time and take things as they come – and life can be good even with CLL.”
“My experiences have
taken me down a path of understanding that for all the questions I ask, for the wondering why we all live a different reality within the framework of our shared diagnosis, there is so much we don't know, and in the acceptance of not knowing, find our way to a place less dense with fear, and lighter with gratitude for the moment.”
“I was diagnosed
in April 1983 – that was 28 years ago. I was able to have 15 years before I needed treatment.”
“The longest survivor
I have been able to discover lived for 52 years after diagnosis and never required any treatment.”
“I was diagnosed
in 1997 with white cells at about 22,000. However, I looked back at old blood tests, and determined that in 1992 they were at 12,000. So, if that was the beginning, then it has now been 19 years (14 since the actual diagnosis).
I have had no other symptoms directly related to the CLL, and seem to be in remarkably good health with one exception. I have had two bouts of skin cancer (basal cell) on my nose. While I recognize that CLL’ers are at a greater risk for skin cancer, I have led an outdoor lifestyle in the California sun, playing lots of tennis, golf and skiing. Who knew then what we know now?! So, my recommendation to all of you – stay covered up and use lots of sunscreen.”
“This is something
you can live with. It can even lead to a richer life because it can make you more aware of your vulnerabilities, appreciate what you do have, allow you to connect to the less fortunate, and deepen your faith.”
“I was diagnosed
17 years ago and was told I could expect to live for another 6 to 7 years. I still have no symptoms of CLL.
My WBC hovers around 40,000 and my platelet count never gets higher than 100,000. My hemoglobin has dropped slightly to 12.8. So far I have not needed treatment, and I hope that if I do need treatment there will be even better therapies than available now.
Were it not for the abnormalities in my blood counts, I would never suspect I have CLL. Live well and try not to obsess over the disease.”
“I have done
a lot of great living in the past five years and am still indolent with no symptoms.
My philosophy has been that if you are not living your ‘normal’ life, then you are letting it be taken from you, which is really a shame. Take a deep breath, figure out how you would be living if you did not have the CLL diagnosis, and follow that path.
Good luck to all.”
“Longevity for me
has become more of a measure of how often I realize that I am present in the moment. Sound corny? Maybe, but being overwhelmed by the good and great fortune to feel alive and a part of something eminently larger than I can even conceive of is ineffable.
I do not hesitate to say that I have leukemia, and acknowledge the opportunity that it has provided so that I now know life in a way unimagined before.”
“How true that
we almost dare not see the ‘good’ in this disease which comes to define part of our uniqueness, but I, too, am convinced that unless we do, we continue to live in some animated state of fear. Instead, if we ‘get it’ we finally arrive at a strength we never knew we had. We find a fullness in life, friends in unlikely places we'd not have known were there, and realizations of the richness of what we have.”
“So uplifting to
see how many folks have done so well for so long with their CLL. I decided I should add my history to the list.
Diagnosed in 1997 at age 59 with a white count of 19k (onset probably 1995 – 16 yrs ago). Had enlarged lymph nodes that have gradually decreased in size over time. Fatigue has been a consistent problem but not life altering (if you don't count occasional afternoon naps!). Now at 72 my WBC is in the 80's, platelets have gradually dropped to the low 100's and I have not had any treatment to date.
I am quite active (walking, biking, etc.) and I credit that at least in part with my continued good health. The continued active life seems to be a thread running through the lives of many long-term survivors and I heartily recommend it.”
“I was diagnosed
in February of 1985 so am now in my 27th year of living with CLL, still on watch and wait with no treatment. When diagnosed my WBC was 12,000 and steadily increased to a high of 113,000 in 2007 but has since been going lower and yesterday was 73,000. I have had no physical symptoms other than an enlarged spleen; my biggest concern is with low platelets, which are now at 83,000.”
“I was diagnosed
in 1992 at the age of 39. When I asked for my prognosis, my oncologist stated, ‘Hope for 10 years; be prepared for less.’ Next year will be 20 years.
I have never been in remission. I was refractory to single agent Fludarabine. Since then, I treated a high white count with leukapheresis (we now know a high WBC alone is not cause for intervention). I treated my anemia with red blood cell transfusions. I haven't needed a transfusion in three years, and my hemoglobin is normal. I feel perfectly healthy. Best of all, my daughter who was only 9 years old at diagnosis is now a young woman of 28.”
“I had an
early reduced intensity (FCR) allo-transplant but lost the graft. My CLL was back in six months and ITP was back in a year, currently controlled with my old friends R and IVIG and cyclosporin. The latter is hard on my blood pressure and kidneys, but it beats the alternatives. No infections, no anemia, no reactions, no other problems.
That's my story and I am sticking to it.
During all this, I have walked my daughter down the marriage aisle, and am now expecting our first grandchild. Last week I said a final goodbye to my father. (It was not clear when I was diagnosed who would pass first.) We have traveled to Australia, New Zealand, China, Japan, and all over Europe and North America in several trips. I have been forced to redefine my career from a practicing MD to a teaching MD, a gratifying change. I enjoy every minute of life and put little off to the future.
Life is sweet. As someone said, if it weren't for the downside, and the downside is enormous, everyone would want cancer.”
“So much of
what we crave on this list is hard science, and yet as humans, we also crave the conversations about how to nurture our spirits.
These are important words to share because of newly diagnosed people - last year it was me. We need to hear from one another that it's possible to live a very happy life even with our disease.
We have an innate resilience as humans. I've been delighted to realize that it comes as standard operating equipment if we let it rise to the surface. When we accept what life has handed us - and Buddha said every human life will include ten thousand joys and ten thousand sorrows - then we create the space where gratitude can grow and flourish alongside the acceptance.”