Tuesday, May 30, 2006
Been Busy
I am spending most of my energy at www.cllforum.com please come and visit. A non judgemental Forum for CLL Dudes and Dudettes.
Tuesday, December 06, 2005
This disease is absurd. Totally absurd and ludicrous
To borrow the words of the late Joe Tullman “This disease is absurd”. I would like to rephrase that to state “these diseases are absurd”. I have come to the conclusion that Chronic Lymphocytic Leukaemia is not one disease but many and of course don’t forget to throw in Small Lymphocytic Lymphoma just to add to the mix.
Why do I say that CLL is many diseases? Well look at the heterogeneous (big word for varied) nature of the symptoms, prognosis, reaction to treatment etc. These factors are different for each and every one of us.
Professor Hamblin has suggested 3 different types of CLL; MCLL or mutated CLL, UCLL or unmutated CLL and MLUS or Monoclonal Lymphocytosis of Undetermined Significance. Others have coined the term “smoldering CLL”.
That is six different ways to classify the beast, but it gets more ludicrous. People in all six different categories can have a totally different progression. Admittedly statistics can show what is probable in a series of patients but in an individual case they are useless.
When we look at an individual why do some people have problems in one area and others do not? Some have white blood counts in the hundreds of thousands with high absolute lymphocyte counts and yet they feel fine. Others have WBC in the tens of thousands yet they develop AIHA or Neutropenia.
So we have to look at what is different in each person, I will start with Chromosome abnormalities; 13q deletion, trisomy 12, 11q deletion, 17p deletion, p53 gene mutations, p53 gene deletions. This is another six different variations of CLL but only 40-50% have these abnormalities, 50-60% have an undiscovered abnormality. Also clonal evolution occurs and some people have multiple anomalies.
So although statistically dodgy we now have 36 different “types of CLL”. When the “normal” karotype is eventually understood this number will be even higher.
We know that CLL cells can make weird antibodies that cause things like Autoimmune Hemolytic Anemia or Immune Thrombocytopenic Purpura but of course not everybody gets these problems. We also know that CLL cells can make unusual monoclonal immunoglobulin free-light chains (or Bence Jones Proteins) these are incomplete immunoglobulins and in large amounts can cause a variety of diseases and again not everyone with CLL produces them.
If CLL cells can produce these substances we know about what else do they produce that we don’t know about. I think, but once again cannot prove, they make lots of things we only have the vaguest idea about and some we have absolutely no idea about.
Why do I say that CLL is many diseases? Well look at the heterogeneous (big word for varied) nature of the symptoms, prognosis, reaction to treatment etc. These factors are different for each and every one of us.
Professor Hamblin has suggested 3 different types of CLL; MCLL or mutated CLL, UCLL or unmutated CLL and MLUS or Monoclonal Lymphocytosis of Undetermined Significance. Others have coined the term “smoldering CLL”.
That is six different ways to classify the beast, but it gets more ludicrous. People in all six different categories can have a totally different progression. Admittedly statistics can show what is probable in a series of patients but in an individual case they are useless.
When we look at an individual why do some people have problems in one area and others do not? Some have white blood counts in the hundreds of thousands with high absolute lymphocyte counts and yet they feel fine. Others have WBC in the tens of thousands yet they develop AIHA or Neutropenia.
So we have to look at what is different in each person, I will start with Chromosome abnormalities; 13q deletion, trisomy 12, 11q deletion, 17p deletion, p53 gene mutations, p53 gene deletions. This is another six different variations of CLL but only 40-50% have these abnormalities, 50-60% have an undiscovered abnormality. Also clonal evolution occurs and some people have multiple anomalies.
So although statistically dodgy we now have 36 different “types of CLL”. When the “normal” karotype is eventually understood this number will be even higher.
We know that CLL cells can make weird antibodies that cause things like Autoimmune Hemolytic Anemia or Immune Thrombocytopenic Purpura but of course not everybody gets these problems. We also know that CLL cells can make unusual monoclonal immunoglobulin free-light chains (or Bence Jones Proteins) these are incomplete immunoglobulins and in large amounts can cause a variety of diseases and again not everyone with CLL produces them.
If CLL cells can produce these substances we know about what else do they produce that we don’t know about. I think, but once again cannot prove, they make lots of things we only have the vaguest idea about and some we have absolutely no idea about.
Unfortunately the majority of research is going into finding the magic bullet to cure CLL. Gleevec in Chronic Myelogeous Leukaemia has proved very successful but the chromosomal change in CML (Philadelphia Chromosome) is well known. In CLL we do not even know what chromosomal damage has occurred in 50-60% of people in fact we call them “normal”.
Until we know more about the diseases called CLL this disease is “Totally absurd and ludicrous”
Monday, December 05, 2005
CLL and Fatigue
This comment from Susan O'Brien made me think, “If one eminent CLL specialist can accept that people with minimal disease can have extreme fatigue and that sometime they treat them to relieve the fatigue, why do so many Doctors say it doesn’t happen”
This is what she said in an Ask the Doctor segment:
“Fatigue is usually related to extent of disease. That is to say, patients with minimal disease usually don’t have a lot of fatigue, but there are exceptions to the rule. Obviously, one reason for fatigue can be anemia, which may be a component of CLL. Nevertheless, we do see patients who have minimal disease but extreme fatigue, and sometimes we treat those patients to alleviate their symptoms.”
Dr. O'Brien is a professor of medicine in the department of leukemia at the University of Texas M. D. Anderson Cancer Center in Houston, Texas. In addition, she serves as clinical consultant and special assistant to the physician-in-chief, vice chair for the M. D. Anderson
So this started my search for others who, like me, had extreme fatigue without anemia. Here are a collection of thoughts I have gathered:
A visiting Doctor from Turkey sat in on my appt. with Dr. Keating because he had a CLL patient back home with minimal CLL and severe fatigue also. I asked Dr. Keating why do some CLL patients get this fatigue and others do not. He didn't know.
Most recently, we have recognized that many new symptoms appear to be related to CLL. One of the more common complaints of CLL patients is the presence of fatigue; patients describe themselves as drained from energy. They require multiple rest periods during the day to perform their activities. This reduced energy does not appear to be necessarily related to the stage of the disease although it is commonly found in the early phase of CLL and appears to be more noticeable in women. As with fatigue, patients with CLL will often complain of difficulties in concentration and in performing complex tasks. The exact cause of these symptoms is unknown although we are actively studying the potential cause of the symptoms. The symptoms may result from an immune reaction by normal lymphocytes to the persistence of the CLL cells.
The ability of CLL to interfere with patient's performance, ability to work and daily responsibilities and activities is very important because patients with this disease can live for many years and need specific recognition and intervention programs to reduce the burden of leukemia on their quality of life.
Question: I was just diagnosed with CLL. I am at stage 0. I have been plagued with fatigue for more than a year. My hematologist does not think this is a result of the CLL, but my primary care physician can find no reason for the fatigue. Could it be caused by the CLL?
Neil E. Kay, M.D. While rare in CLL, symptoms of fatigue do sometimes occur. The cause is unclear since the leukemic burden (the number of malignant cells in the body) is small at stage 0, but it could be related to secreted products of the CLL clone, that is, hormone-like agents released from the CLL leukemia cells that can affect the patient with symptoms like fatigue or even fever. Perhaps you should ask your primary care doctor or your oncologist about this possibility.
In a recent survey 36% of people diagnosed with CLL stated that fatigue was a symptom at the time of diagnosis. So why do so many Heamotologists, Oncologists and Doctors say this is unrelated to CLL?
I have a few personal theories:
“It must be something else – I didn’t study Fatigue in Heamatology 101”
This is what she said in an Ask the Doctor segment:
“Fatigue is usually related to extent of disease. That is to say, patients with minimal disease usually don’t have a lot of fatigue, but there are exceptions to the rule. Obviously, one reason for fatigue can be anemia, which may be a component of CLL. Nevertheless, we do see patients who have minimal disease but extreme fatigue, and sometimes we treat those patients to alleviate their symptoms.”
Dr. O'Brien is a professor of medicine in the department of leukemia at the University of Texas M. D. Anderson Cancer Center in Houston, Texas. In addition, she serves as clinical consultant and special assistant to the physician-in-chief, vice chair for the M. D. Anderson
So this started my search for others who, like me, had extreme fatigue without anemia. Here are a collection of thoughts I have gathered:
A visiting Doctor from Turkey sat in on my appt. with Dr. Keating because he had a CLL patient back home with minimal CLL and severe fatigue also. I asked Dr. Keating why do some CLL patients get this fatigue and others do not. He didn't know.
Most recently, we have recognized that many new symptoms appear to be related to CLL. One of the more common complaints of CLL patients is the presence of fatigue; patients describe themselves as drained from energy. They require multiple rest periods during the day to perform their activities. This reduced energy does not appear to be necessarily related to the stage of the disease although it is commonly found in the early phase of CLL and appears to be more noticeable in women. As with fatigue, patients with CLL will often complain of difficulties in concentration and in performing complex tasks. The exact cause of these symptoms is unknown although we are actively studying the potential cause of the symptoms. The symptoms may result from an immune reaction by normal lymphocytes to the persistence of the CLL cells.
The ability of CLL to interfere with patient's performance, ability to work and daily responsibilities and activities is very important because patients with this disease can live for many years and need specific recognition and intervention programs to reduce the burden of leukemia on their quality of life.
Question: I was just diagnosed with CLL. I am at stage 0. I have been plagued with fatigue for more than a year. My hematologist does not think this is a result of the CLL, but my primary care physician can find no reason for the fatigue. Could it be caused by the CLL?
Neil E. Kay, M.D. While rare in CLL, symptoms of fatigue do sometimes occur. The cause is unclear since the leukemic burden (the number of malignant cells in the body) is small at stage 0, but it could be related to secreted products of the CLL clone, that is, hormone-like agents released from the CLL leukemia cells that can affect the patient with symptoms like fatigue or even fever. Perhaps you should ask your primary care doctor or your oncologist about this possibility.
In a recent survey 36% of people diagnosed with CLL stated that fatigue was a symptom at the time of diagnosis. So why do so many Heamotologists, Oncologists and Doctors say this is unrelated to CLL?
I have a few personal theories:
“It must be something else – I didn’t study Fatigue in Heamatology 101”
Most Doctors do not get to see many CLL cases, if only about one third of them have fatigue as a presenting feature then the number is reduced even more.
A percentage of these will be anemic and have an obvious reason for their fatigue. Then take the average age of diagnosis of about 70, many of the older group may see the fatigue as a sign of ageing or a result of other coexisting illness.
Fatigue is the most common cause of visits to see a Doctor and there is nothing they can do about it, they carry out tests and find nothing. It is only when they find a clinical cause for the fatigue e.g. under active Thyroid, Rheumatoid Arthritis that they believe it exists. Back in medical school they spent a small amount of time studying Heamatology and even less on CLL the text books say fatigue is related to anemia, thus no anemia – no fatigue caused by CLL.
“Its all in your head – Try this anti-depressant”
Fatigue is a symptom of depression; you have been diagnosed with a scary disease so you must be depressed. Up to one in four females and one in six males will experience depression in their lifetime. Given the conventional wisdom that CLL does not cause fatigue and that Doctors see depression every single day many people are given antidepressants to see if this will remove the fatigue. For some it works and they were depressed but for others it just reinforces a vicious cycle “what is wrong with me, I have CLL I feel like shit and nobody will do anything for me, now they think I’m mentally ill. They won’t even take me seriously.”
“There is nothing we can do anyway – Try to calm the patient”
There really is nothing that the medical profession can do about CLL related fatigue short of the possibly dangerous treatments for CLL and at an early stage I would rather live with fatigue that face chemotherapy. But this is a quality of life issue; others may disagree and would do anything to relieve debilitating fatigue. But to get any treatment for CLL your Hem/Onc must agree, if they do not accept that fatigue is caused by CLL they certainly are not going to treat you for it. If they accept that fatigue is caused by CLL they also have to live by the Hippocratic Oath and “Do no harm”. They may consider that early treatment may do harm. So it is far easier to deny the connection, this removes the dilemma of whether to treat or not. This is a simple way out because conventional wisdom supports their decision so no peer pressure could ever brought to bear.
I am certain that in some cases CLL can cause fatigue in early stage, non anemic people but I cannot prove it. Although researchers say that this subject needs more research the likelihood of that is slim. Research funding is results based. So sorry Dudes and Dudettes CLL fatigue is something we are just going to have to live with. But we need the medical profession to accept our very real symptoms and rewrite the text books.
I will end this section with a quote from a patient of Dr. Michael Keating:
“I just returned from Houston and my appt. with Dr. Keating. I thought you would like to know what he said, especially for those who also suffer from fatigue. CLL can cause severe fatigue. They made this discovery while treating very advanced forms of CLL with Rituxan. Even though there was little response to the leukemia, the patients said they felt better. Then they thought, perhaps the CLL is causing a production of chemicals in the body which has a negative effect on brain function (energy level and ability to concentrate, etc.) They decided to investigate more by taking CLL cells, normal T and B cells to determine which ones were making these chemicals. It turns out; it was the normal B cells reacting to the CLL.”
The only conclusion I can reach is that in early disease the normal B cells are mounting an immune response to CLL. This internal fight is causing the fatigue. The Fatigue is REAL
A percentage of these will be anemic and have an obvious reason for their fatigue. Then take the average age of diagnosis of about 70, many of the older group may see the fatigue as a sign of ageing or a result of other coexisting illness.
Fatigue is the most common cause of visits to see a Doctor and there is nothing they can do about it, they carry out tests and find nothing. It is only when they find a clinical cause for the fatigue e.g. under active Thyroid, Rheumatoid Arthritis that they believe it exists. Back in medical school they spent a small amount of time studying Heamatology and even less on CLL the text books say fatigue is related to anemia, thus no anemia – no fatigue caused by CLL.
“Its all in your head – Try this anti-depressant”
Fatigue is a symptom of depression; you have been diagnosed with a scary disease so you must be depressed. Up to one in four females and one in six males will experience depression in their lifetime. Given the conventional wisdom that CLL does not cause fatigue and that Doctors see depression every single day many people are given antidepressants to see if this will remove the fatigue. For some it works and they were depressed but for others it just reinforces a vicious cycle “what is wrong with me, I have CLL I feel like shit and nobody will do anything for me, now they think I’m mentally ill. They won’t even take me seriously.”
“There is nothing we can do anyway – Try to calm the patient”
There really is nothing that the medical profession can do about CLL related fatigue short of the possibly dangerous treatments for CLL and at an early stage I would rather live with fatigue that face chemotherapy. But this is a quality of life issue; others may disagree and would do anything to relieve debilitating fatigue. But to get any treatment for CLL your Hem/Onc must agree, if they do not accept that fatigue is caused by CLL they certainly are not going to treat you for it. If they accept that fatigue is caused by CLL they also have to live by the Hippocratic Oath and “Do no harm”. They may consider that early treatment may do harm. So it is far easier to deny the connection, this removes the dilemma of whether to treat or not. This is a simple way out because conventional wisdom supports their decision so no peer pressure could ever brought to bear.
I am certain that in some cases CLL can cause fatigue in early stage, non anemic people but I cannot prove it. Although researchers say that this subject needs more research the likelihood of that is slim. Research funding is results based. So sorry Dudes and Dudettes CLL fatigue is something we are just going to have to live with. But we need the medical profession to accept our very real symptoms and rewrite the text books.
I will end this section with a quote from a patient of Dr. Michael Keating:
“I just returned from Houston and my appt. with Dr. Keating. I thought you would like to know what he said, especially for those who also suffer from fatigue. CLL can cause severe fatigue. They made this discovery while treating very advanced forms of CLL with Rituxan. Even though there was little response to the leukemia, the patients said they felt better. Then they thought, perhaps the CLL is causing a production of chemicals in the body which has a negative effect on brain function (energy level and ability to concentrate, etc.) They decided to investigate more by taking CLL cells, normal T and B cells to determine which ones were making these chemicals. It turns out; it was the normal B cells reacting to the CLL.”
The only conclusion I can reach is that in early disease the normal B cells are mounting an immune response to CLL. This internal fight is causing the fatigue. The Fatigue is REAL
Saturday, December 03, 2005
The Aches and Pains Saga
Armed with my latest test results I returned to see Dr. Steve, I had more blood work done at the clinic and was surprised that the results were ready in about 30 mins. Since diagnosis my WBC and absolute lymphocytes have been slowly trending up and neutrophils and platelets slowly falling. But the neuts and plates are still in low normal range so nothing to worry about. With the blood tests, CAT and BMB results watch and wait was decided apon. Blood tests every three months and lets see what happens.
But what about the joint pain, muscle aches and fatigue? Were they being caused by CLL? Dr. Steve was not certain, he thought probably not, but he couldn't or wouldn't say for sure. He thought that I had polymyalgia rhumatica and said he had seen it in other people with CLL. He thought that because my bone marrow was not too bad that low dose steroids may help. He wanted me to discuss this with my GP.
Dr. John was a little concerned, he does not like to even prescribe ibuprofen and warned me of the possible side effects of prednisolone. He said he would write a letter to the Heamatologist and call the Rhuematologist to confirm that this was the right thing to do. I was to come back and see him in two days.
After consulting with the other Doctors they came up with a word for my aches and pains. "We may as well call it something they decided" So what they came up with was a diagnosis of polymyalgia rhumatica caused by a paraneoplastic syndrome. In other words they thought that the CLL was making something that was causing the symptoms but they did not know what that was. It may have been my insistance that I thought my symptoms were caused by CLL that made them come to this conclusion and they wanted to keep me happy.
I was prescribed prednisolone at 25 mg a day and the results were almost instant. Within two days I was feeling much better and my quality of life improved greatly. But the symptoms are creeping back I see the rhuematologist again in a couple of weeks and things will be reviewed yet again.
But what about the joint pain, muscle aches and fatigue? Were they being caused by CLL? Dr. Steve was not certain, he thought probably not, but he couldn't or wouldn't say for sure. He thought that I had polymyalgia rhumatica and said he had seen it in other people with CLL. He thought that because my bone marrow was not too bad that low dose steroids may help. He wanted me to discuss this with my GP.
Dr. John was a little concerned, he does not like to even prescribe ibuprofen and warned me of the possible side effects of prednisolone. He said he would write a letter to the Heamatologist and call the Rhuematologist to confirm that this was the right thing to do. I was to come back and see him in two days.
After consulting with the other Doctors they came up with a word for my aches and pains. "We may as well call it something they decided" So what they came up with was a diagnosis of polymyalgia rhumatica caused by a paraneoplastic syndrome. In other words they thought that the CLL was making something that was causing the symptoms but they did not know what that was. It may have been my insistance that I thought my symptoms were caused by CLL that made them come to this conclusion and they wanted to keep me happy.
I was prescribed prednisolone at 25 mg a day and the results were almost instant. Within two days I was feeling much better and my quality of life improved greatly. But the symptoms are creeping back I see the rhuematologist again in a couple of weeks and things will be reviewed yet again.
Friday, December 02, 2005
Well i thought I better show my ugly mug to you, Hair is thinning, going grey, but i still have my Trendy Kuta Lines Shirt. The picture was shot in Bali, Indonesia. If anyone ever gets the chance to visit Bali please go. The people of Bali are the most humble, friendly and loving race I have ever met. Don't worry about bombs they can happen anywhere. These gentle people need our help.
CAT Scans and BMBs
Well it was time to “bite the bullet” and find out what was really going on. I had never had a CAT scan before. I called to make an appointment and was told to come in the day before to get some Goo to drink. I was told it tasted awful but it wasn’t too bad, 3 sachets mixed with water and I was ready to go. I arrive at Queensland Diagnostic Imaging and yet more Goo to drink a little more unpleasant but not too bad. “That’s it” I think, enough contrast Goo to scan an elephant but little did I know.
The lovely Dr. doing the scan says “I will need to give you an injection of some contrast material” Oh well yet another prick in my arm I am used to those by now, then I saw the syringe it was HUGE, enough for a herd of elephants. The Doc explained about the little machine that would squeeze this stuff into me and the table slid into the hole in the scanner. I was then told by a little speaker that I should expect to feel warm and have a metallic taste in my mouth as the contrast seeped into my bloodstream.
The scanner started to whirr and a metallic voice from the machine said “Hold your breath”… “Breathe normally”. I saw the little Toshiba logo on the scanner and wondered why the scanner did not talk with a Japanese accent? Funny how the mind works when you are in odd positions.
So with neck, chest and abdomen scanned and two gigantic syringes of Goo later I drive home to eat and drink liters of water to flush out my Goo infested body. Next day I get the results “Mild Generalized lymphadenopathy” the nodes in my neck and armpits are a little too big, but not too big. And my spleen is OK.
I think OK I have some little CLL buggers in my lymph glands, not to bad I have read about people looking like chipmunks, I can always grow my beard longer if they start to show.
Two days later its BMB day. Dr. John had said to me “Do Not have a BMB without sedation” and fortunately this was how it was done. There is only one place where I live that does BMB and they use “Twilight Sedation”. I was all set for 11.00 AM the next morning until I get a call saying can you come in at 7.30 AM because we have a 95 year old woman who needs your 11.00 AM appointment of course I said yes, and if a 95 year old could have this done what was I worrying about.
I lay on the table and the anesthetist sneaks a syringe full of “stuff to relax me” into my arm and I’m off with the pixies. I do remember feeling pressure on my hip then thinking that’s hurting then I woke up. It was an hour later and after observation for another hour my parents drove me home and I slept for the rest of the day. I had a little bandage on my hip and when I removed it two days later I could hardly even see a mark. Looking back it was nowhere near as bad as I had imagined, if possible I would recommend sedation to anyone who has this done.
The tests showed I have clusters of lymphocytes hanging around together in their little foci. But mainly it showed that the marrow was making the right things even if the numbers were not quite right. The reason for the BMB was to get a baseline to compare in the future and I am glad I had one done.
The lovely Dr. doing the scan says “I will need to give you an injection of some contrast material” Oh well yet another prick in my arm I am used to those by now, then I saw the syringe it was HUGE, enough for a herd of elephants. The Doc explained about the little machine that would squeeze this stuff into me and the table slid into the hole in the scanner. I was then told by a little speaker that I should expect to feel warm and have a metallic taste in my mouth as the contrast seeped into my bloodstream.
The scanner started to whirr and a metallic voice from the machine said “Hold your breath”… “Breathe normally”. I saw the little Toshiba logo on the scanner and wondered why the scanner did not talk with a Japanese accent? Funny how the mind works when you are in odd positions.
So with neck, chest and abdomen scanned and two gigantic syringes of Goo later I drive home to eat and drink liters of water to flush out my Goo infested body. Next day I get the results “Mild Generalized lymphadenopathy” the nodes in my neck and armpits are a little too big, but not too big. And my spleen is OK.
I think OK I have some little CLL buggers in my lymph glands, not to bad I have read about people looking like chipmunks, I can always grow my beard longer if they start to show.
Two days later its BMB day. Dr. John had said to me “Do Not have a BMB without sedation” and fortunately this was how it was done. There is only one place where I live that does BMB and they use “Twilight Sedation”. I was all set for 11.00 AM the next morning until I get a call saying can you come in at 7.30 AM because we have a 95 year old woman who needs your 11.00 AM appointment of course I said yes, and if a 95 year old could have this done what was I worrying about.
I lay on the table and the anesthetist sneaks a syringe full of “stuff to relax me” into my arm and I’m off with the pixies. I do remember feeling pressure on my hip then thinking that’s hurting then I woke up. It was an hour later and after observation for another hour my parents drove me home and I slept for the rest of the day. I had a little bandage on my hip and when I removed it two days later I could hardly even see a mark. Looking back it was nowhere near as bad as I had imagined, if possible I would recommend sedation to anyone who has this done.
The tests showed I have clusters of lymphocytes hanging around together in their little foci. But mainly it showed that the marrow was making the right things even if the numbers were not quite right. The reason for the BMB was to get a baseline to compare in the future and I am glad I had one done.
At Last Someone Cares
I was anxious as I drove down the Bruce Highway to Brisbane (For all you Monty Python fans it really is called "The Bruce") would I get the same treatment from Dr. Steve? Was I worrying about nothing? No my aches and pains were getting worse I was beginning to be unable to function, walking was painful and I was sleeping all night and half the day.
Dr. Steve was running late, I later found out that he is always running late. The receptionist said there is a good coffee shop on the sixth floor, so at least my wait was comfortable. At last my name is called and a smiling face says "Hi Steve come in". I looked at his face and thought "I like you" I was right I had found someone who cared. We talked and talked, no good cancer crap, no sugar coating, just facts and straight forward caring. After a full physical exam and answering most of my questions an hour and a half had passed. Now I know why Dr. Steve is always running late, he does not wear a watch and spends the time he needs to with each person. I left with bits of paper for more blood tests, a CAT scan, and a Bone Marrow Trephine and Biopsy. But most of all I left with a sense of being cared for, at last someone cares. I had an appointment to see Dr. Steve in two weeks and I knew I had done the right thing in getting another opinion. But were my symptoms caused by CLL? "We Don't Know" was still the answer.
Dr. Steve was running late, I later found out that he is always running late. The receptionist said there is a good coffee shop on the sixth floor, so at least my wait was comfortable. At last my name is called and a smiling face says "Hi Steve come in". I looked at his face and thought "I like you" I was right I had found someone who cared. We talked and talked, no good cancer crap, no sugar coating, just facts and straight forward caring. After a full physical exam and answering most of my questions an hour and a half had passed. Now I know why Dr. Steve is always running late, he does not wear a watch and spends the time he needs to with each person. I left with bits of paper for more blood tests, a CAT scan, and a Bone Marrow Trephine and Biopsy. But most of all I left with a sense of being cared for, at last someone cares. I had an appointment to see Dr. Steve in two weeks and I knew I had done the right thing in getting another opinion. But were my symptoms caused by CLL? "We Don't Know" was still the answer.
Thursday, December 01, 2005
The Hunt for Knowledge
At last I knew what was wrong with me, or at least I thought I did. It seemed reasonable to me that the symptoms I have were related to CLL, my blood was wonky and making stuff that was causing the aches and pains. Reasonable but maybe not true!!
It seems that at every bend in the CLL journey there is a signpost saying "We Don't Know". I had the feelings that I think all "Leukaemia Dudes" (Thanks Dave) have, I was scared, I wanted to know what was going to happen. I thought when you get Cancer you hit it with a big stick and better sooner than later. I was wrong. This beast is different and I was just begining to realise why.
So being an internet junkie, ( I have been online since 1994) I looked up CLL in Google and found many sites with information, but this did not seem to apply to me. It was an "old man's disease" average age of diagnosis 70 and in fact it was rare in people under 50. I was only 50 and had planned to live another 50 years.
Then a word hit me like a Mack Truck, INCURABLE. "Oh dear" I thought if this this cannot be cured I had better find out how it can be managed and it was at this time I found the ACOR CLL List
It seems that at every bend in the CLL journey there is a signpost saying "We Don't Know". I had the feelings that I think all "Leukaemia Dudes" (Thanks Dave) have, I was scared, I wanted to know what was going to happen. I thought when you get Cancer you hit it with a big stick and better sooner than later. I was wrong. This beast is different and I was just begining to realise why.
So being an internet junkie, ( I have been online since 1994) I looked up CLL in Google and found many sites with information, but this did not seem to apply to me. It was an "old man's disease" average age of diagnosis 70 and in fact it was rare in people under 50. I was only 50 and had planned to live another 50 years.
Then a word hit me like a Mack Truck, INCURABLE. "Oh dear" I thought if this this cannot be cured I had better find out how it can be managed and it was at this time I found the ACOR CLL List
At last people like me, people with fears, people with ideas and people with solutions.
At first I tried to find out what "kind" of CLL I had, I looked at the prognostic indicators but had very little information. I was CD38+ which was bad but this was all I knew. My Beta 2 Microgobulin was 2.1 just a little bit high, and I had Bence Jones Proteins in my urine (unusual but not uncommon) by this time the 5 weeks were up and It was time to drive to Bribane to see Dr. Steve my new Heamatologist. I armed myself with questions and drove the 2 hours to Brisbane.
Wednesday, November 30, 2005
Why Am I So Tired - The Journey Begins
I felt so bad, tired, aching all over, and generally not well. So I went to see Dr. John. He is a very good GP and said you probably have a virus but we had better check. We will do some blood tests come back and see me in a few days. Mmmm white blood counts high, lymphocytes high better test for Ross River, Bahmah Forest and CMV. Nothing showed up.
I should have listened more carefully when Dr. John said "Leukaemia can do funny things to your blood" but he was sure it was something else.
So off to see Dr. David the Rhuematologist, more blood tests, Thyroid, Rhumatoid Factor. All normal. Dr. David said "Lets look at these lymphocytes" more blood tests. Next day a call from Dr. David saying "Sorry to tell you over the phone but you have leukaemia" come and see me tomorrow. Better bring someone with you". I got the standard CLL diagnosis blurb, Good Cancer, may not progress, this must be a standard line taught in Medical School. This was when I first heard of Chronic Lymphocytic Leukaemia it was not going to be the last!!
I should have listened more carefully when Dr. John said "Leukaemia can do funny things to your blood" but he was sure it was something else.
So off to see Dr. David the Rhuematologist, more blood tests, Thyroid, Rhumatoid Factor. All normal. Dr. David said "Lets look at these lymphocytes" more blood tests. Next day a call from Dr. David saying "Sorry to tell you over the phone but you have leukaemia" come and see me tomorrow. Better bring someone with you". I got the standard CLL diagnosis blurb, Good Cancer, may not progress, this must be a standard line taught in Medical School. This was when I first heard of Chronic Lymphocytic Leukaemia it was not going to be the last!!
An appointment was made to see a local Heamatologist, I'll call her Dr. Kay. I waited 5 weeks for an urgent appointment. I accepted this wait because she was the only local seeing new patients and was told she "new her stuff". I arrive 10 minutes early knowing there would be forms to fill out, and heard raucous laughter coming from the doctor's room, I thought "great a sense of humour" but it was not a patient it was a drug company rep. 20 minutes after my appointment time he leaves and now Dr. Kay is running late.
I sit at her desk while she reads the referring letter, she looks at my blood work, mutters something about CD19 and CD5 and then says you have CLL but don't worry 4% of people your age have it!! Come back and see me in six months. What about the lumps in my kneck I ask. We dont worry about them until they are huge was the reply. So no physical examination, no explaination of my symptoms, less that 10 minutes. $170 thanks (Thank goodness I am on a healthcare card).
I was shocked and immediatly went to see Dr. John, the receptionist could see I was upset and I got to see him within 15 minutes. He was as shocked as me and I was referred to The Mater Private Medical Centre in Brisbane. Another 5 week wait.
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