Its been ages, or so it seems, since the last tests were done. These tests came back great. Some counts are low and will have to be picked up, but Stevens white blood count has come all the way down to normal! This is wonderful and the next step will be to stabilize the other readings.
It seems that it is kinda normal for the bloods to be all over the place for a while before settling down - we hope this does not take too long as he is feeling tired and worn out, which must get very frustrating, especially when it goes on for a long time.
Ok, here they are for any of you that are trying to figure this thing out and want the numbers:
WBC - 8.7 - normal! yehhhhhhhhhhhhaaaaaaaaaaaaaaaaaaaaa!
RBC - 3.37 - low
HGB - 9.9 - low (hemaglobin)
HCT - 30.3 - low (hematocrit)
RDW - high (this means his red blood cells are larger than normal - not a problem)
If any of you figure this all out - PULEEEZE call me, email me or write to me and let me know too! It seems like the more I read, the more I have to learn. Its definately a steep learning curve, but with the help of some truely amazing people on boards that are in the same situation as Steven, and me too, have helped tremendously by sifting through so much of the scary stuff, facts and meanings. Family and friends have been amazing too. Somehow this has changed me in a very deep way - and someday I will no doubt find a comfortable place again.
It is wonderful to go with Steven to his blood test - I love spending the time with him - he has a wicked sense of humor that comes with a really cute little smile! and a really positive way of looking at all this. He has once again got color in his face and looks better, but I am expecting him to get more tired again as the bloods wobble a bit before settling down. Laura is wonderful for him - they really look good and happy and Steven is obviously eating well - I eyed a very yummy looking plate of food the other night...........
As much as this cancer is controllable, treatable and hopefully cureable, it must be a drain on both of them in many ways. I would find the constant tiredness very difficult to deal with even though I would understand - but it is not normal for a young adult to be this tired, and it must be very trying for Laura too. Please keep sending your positive vibes, prayers and thoughts her way too.
Unfortunately Lisa was not a perfect match for Steven for the bone marrow. Fortunately this is not an urgent problem and hopefully not something we will ever have to worry about. She was tremendously dissappointed, but at the same time she is not totally ruled out as a possible donor. She is a 56% match, and if we ever have to do a transplant, we would hope for a better match than that, but she is 'on hold' just in case. She has been to the doctors to make sure that she stays healthy. This is great, firstly for herself and then for the obvious reasons. Major kudos to her for quitting smoking the minute she heard about Steven, and she is still smoke free! Well done, my girl!
Joleen has Steven on prayer lists, talks to people about him, widening the list of caring folks, she is wonderfully supportive and we will probably have her type tested in the next few weeks. It is amazing to see the upbeat-ness of this young lady - it wears me out just watching her! I drove with her for the first time yesterday - I think she was more nervous that I was......... well, I did threaten her with getting out on the highway if I was uncomfortable, but it turns out that she is a pretty darn good driver! And yes, I would drive with her again - no problem. :-)
So. The news seems all good at this stage. We will keep thinking positive. Steven has another appointment at Vanderbilt University Hospital in Nashville in a few months and then we will know where this disease is going. The test that shows what percentage of his cells were leukemic came back 100% ! 100% of the cells had the deviant chromosome in them. The test in Nashville will tell us how Gleevec has brought this count down. We need to have this number at zero. So now you know what to think as regards to his Ph+ count - zip/zero/zilch.
We are hoping to go to Alaska again this year, but that will totally depend on the results of those tests - so we are going full steam ahead with the trip plans, absolutely believing that the results will be great.......... There is no other way to do it
Thanks for all the support, from everyone. The emails, phone calls, messages and thoughts are all help tremendously.
Till next time......
{*.*} This is a positive thought and a hug for a new friend of mine, Debbie and her daughter, Laura who also has CML at 19 years old)
Friday, March 31, 2006
Tuesday, March 21, 2006
Humbled........
This is a normal peripheral blood smear. The red blood cells are normocytic with good hemoglobin content. A normal, segmented neutrophil is in the center of the picture. A normal platelet is to the immediate left of the neutrophil. Other normal platelets are scattered throughout the field.
When you think of Steven - visualize this to be coursing through his veins!
So today I go and read yet another updated CML board, find a link to a page that grabs my attention for the next few hours. This was a site about people that have advanced CML and cancer - all SO much worse off than Steven is. I read these stories that are mostly written by mothers of these children and young adults.
I am humbled by the strength shown in these women and families dealing with such difficult situations. I am encouraged by so many of their stories, strengthened by their hopes and oh so glad that my personal black cloud of yesterday has passed by once again.
Thanks for your positive comments - they all help tons.............
XXxx
Monday, March 20, 2006
My Angry Stage
I don't want Steven to have this, dammit! Idont want Steven to have this.
Dammit.
You think that someday my thoughts will calm down? You think? It's the first thing I think of in the morning, the last thing at night and probably waaaaay to much during the day. If I dont take those happy little white sleeping pills at night I simply dont sleep - I hold the most complicated and convoluted conversations in my head at night. And then I struggle to wake up in the mornings. And then it hits me all over again. I am SO flippin mad that Steven has this. So flippin mad! I see him and he looks all fine apart from being pale and tired and I want to scream. I want to make it right, to fix it and make at least his young years free of this sh*t. I am SO MAD!
I know that all the statistics, research and new medications and everything shows that this is a cancer that is treatable, even curable. I know that we are fortunate in so many ways. I know that we are all going to get through this and he will be ok even though its going to be a long road. I know this. Absolutely.
I know this - but thats not the point. The point is how do I tell the difference between the angry and terrified in me? How do I cope with the change between the absolute confidence of knowing that he will be ok - to the frustration and worry and absolute anger that a simple common cold will never again be just a simply common sniffle again? How can I stop those incredible peaks of confidence and knowledge and then the fall to the common 'mother concern' times? The point is - he has this thing, and at times it makes me scared, worried, sleepless and oh-so-flippin mad - and I am not the one living with this disease! Is it easier on me or on him? Who could ever tell......... I so badly hope that its harder on me. I can hope.
I am mostly able to be strong around him. Mostly able to hold myself together now for days at a time - and then 'all fall down' happens. I still know the facts, but my heart and eyes won't listen - my sensibilities fly out of the window, and Frank has to hold me till I find me again. I don't know if it is healthy to 'hide' this side of me from Steven or to just be. I absolutely will not have him comforting or protecting me from any worry - that would make everything even worse and make me worry even more - God help us all! How does one find the Normal Button in a situation like this?
It is awful to feel so totally, absolutely and completely helpless.
Ok, now that I have vented, I do feel better again - the downs are always followed by positive thoughts and a definate up - I simply dont allow it any other way! I think it's this that is most tiring - the constant ups and downs - like a permanent roller coaster ride.
As I said at the beginning of this blog, this is going to be a journey along the way in dealing and beating this disease and the reason for the blog is to share that journey. This is just a part of it. Hopefully as time goes by, I will learn to deal with all this much better, and there will be more and more hours and days that are normal. We will all simply have to get used to the new normal.
Thanks for the comments on the blog and the emails - they really help tremendously - spelling mistakes and all! :-)
Steven, you are my "MAP" - Most Admired Person! Not only for how you are dealing with this, but simply because you ARE dealing with it. You show strength in so many ways that inspire me. Writing this makes me think of the words at the Niagara Falls, written by Lau Tzu: "Water is fluid, soft and yielding. But water will wear away rock, which is rigid and cannot yield. As a rule, whatever is fluid, soft and yielding will overcome whatever is rigid and hard. This is another paradox: what is soft is strong."
Be soft, be strong and I know you will wear away this rock. Love you, my boy. And you too, Ms Laura - my hat is permanently tipped to you and your strengths as well. Mazeltov!
Dammit.
You think that someday my thoughts will calm down? You think? It's the first thing I think of in the morning, the last thing at night and probably waaaaay to much during the day. If I dont take those happy little white sleeping pills at night I simply dont sleep - I hold the most complicated and convoluted conversations in my head at night. And then I struggle to wake up in the mornings. And then it hits me all over again. I am SO flippin mad that Steven has this. So flippin mad! I see him and he looks all fine apart from being pale and tired and I want to scream. I want to make it right, to fix it and make at least his young years free of this sh*t. I am SO MAD!
I know that all the statistics, research and new medications and everything shows that this is a cancer that is treatable, even curable. I know that we are fortunate in so many ways. I know that we are all going to get through this and he will be ok even though its going to be a long road. I know this. Absolutely.
I know this - but thats not the point. The point is how do I tell the difference between the angry and terrified in me? How do I cope with the change between the absolute confidence of knowing that he will be ok - to the frustration and worry and absolute anger that a simple common cold will never again be just a simply common sniffle again? How can I stop those incredible peaks of confidence and knowledge and then the fall to the common 'mother concern' times? The point is - he has this thing, and at times it makes me scared, worried, sleepless and oh-so-flippin mad - and I am not the one living with this disease! Is it easier on me or on him? Who could ever tell......... I so badly hope that its harder on me. I can hope.
I am mostly able to be strong around him. Mostly able to hold myself together now for days at a time - and then 'all fall down' happens. I still know the facts, but my heart and eyes won't listen - my sensibilities fly out of the window, and Frank has to hold me till I find me again. I don't know if it is healthy to 'hide' this side of me from Steven or to just be. I absolutely will not have him comforting or protecting me from any worry - that would make everything even worse and make me worry even more - God help us all! How does one find the Normal Button in a situation like this?
It is awful to feel so totally, absolutely and completely helpless.
Ok, now that I have vented, I do feel better again - the downs are always followed by positive thoughts and a definate up - I simply dont allow it any other way! I think it's this that is most tiring - the constant ups and downs - like a permanent roller coaster ride.
As I said at the beginning of this blog, this is going to be a journey along the way in dealing and beating this disease and the reason for the blog is to share that journey. This is just a part of it. Hopefully as time goes by, I will learn to deal with all this much better, and there will be more and more hours and days that are normal. We will all simply have to get used to the new normal.
Thanks for the comments on the blog and the emails - they really help tremendously - spelling mistakes and all! :-)
Steven, you are my "MAP" - Most Admired Person! Not only for how you are dealing with this, but simply because you ARE dealing with it. You show strength in so many ways that inspire me. Writing this makes me think of the words at the Niagara Falls, written by Lau Tzu: "Water is fluid, soft and yielding. But water will wear away rock, which is rigid and cannot yield. As a rule, whatever is fluid, soft and yielding will overcome whatever is rigid and hard. This is another paradox: what is soft is strong."
Be soft, be strong and I know you will wear away this rock. Love you, my boy. And you too, Ms Laura - my hat is permanently tipped to you and your strengths as well. Mazeltov!
Saturday, March 18, 2006
Happy Apples.......
(click on the pic to make it bigger)Today, at the 'insistance' of a really good friend, Bea, I once again went to painting class. I do this occasionally and really love the group and the outing and the teach, of course! but realise that I should not quit my day job for a painting profession!
Today we painted a rusty bucket with apples. My painting drew many laughs when I changed the focus of the painting, let loose the idea of trying for perfection and had a blast. There is some 'grafitti' on the bucket: The date that Steven was diagnosed with CML; a sun for the sunny thoughts, positive vibes and determination we all have to beat this thing; those round red thingys under the sun are all the healthy blood cells he will have in the very near future - and keep; Steven's initials just because I think he is amazing and fantastic; the tear drops are for the tears we have shed and the tears of happiness we are going to shed when this is all better; the eye for eyes wide open and learning and awareness; the peace sign for everyone that is holding Steven, and all of us, in their hearts and prayers; and the mouth is for a million smiles and much happiness.............
And all the smiley apples? Well, I cannot paint apples and smiley faces make more smiley faces, besides I had told Wendy that I would do something to make her laugh too!
This painting is going to get framed, and I will keep it and will one day pass it on to Steven - so that his grandchildren can see what a nut his mother was!
Love you, my boy.
Friday, March 17, 2006
The first Gleevec blood test
And here I sit, waiting for the test results.............. I was going to go with Steven this morning for this blood test, but he seemed quite able and capable and willing to go on his own. As much as I want to 'control' this situation, I have to let him do this on his own when he wants to or can, trusting with all my heart that he wont hesitate to let me know if and when he wants me to go along with him - I will meet him or go with him anywhere, anytime without any hesitation at all.
He has promised to call me immediately with his results. I have promised myself that I will stop trying to be "mother hen" - its SO difficult! Maybe I should have gone along today seeing as it was the first blood test after starting Gleevec, and maybe not. Its too late now - he is there and I am here. And we wait.
And here they are: Last week his wbc was 176 000 - this week they are down to 119 000! Still a way to go to get to 'normal', but he is getting there.........They are coming down nicely and doc only wants to see Steven in two weeks time again. He, Steven, still has no side effects worth mentioning at all - so all is looking good.
And then there was a glitch with the insurance company - they did not receive his payment this month and were literally on the verge of cancelling his insurance! I know he wrote that check out! I quickly phoned their offices and made a telephone payment and Steven says that from now on he will stay at least a month ahead on payments to them! That was really scary and could have "spelled" some really dark clouds for us all.......
So all is looking a lot brighter this week. I will be able to see the official test results tonight and compare the other readings.
Thanks for all your support and care and phone calls - the really really do help make this easier.
He has promised to call me immediately with his results. I have promised myself that I will stop trying to be "mother hen" - its SO difficult! Maybe I should have gone along today seeing as it was the first blood test after starting Gleevec, and maybe not. Its too late now - he is there and I am here. And we wait.
And here they are: Last week his wbc was 176 000 - this week they are down to 119 000! Still a way to go to get to 'normal', but he is getting there.........They are coming down nicely and doc only wants to see Steven in two weeks time again. He, Steven, still has no side effects worth mentioning at all - so all is looking good.
And then there was a glitch with the insurance company - they did not receive his payment this month and were literally on the verge of cancelling his insurance! I know he wrote that check out! I quickly phoned their offices and made a telephone payment and Steven says that from now on he will stay at least a month ahead on payments to them! That was really scary and could have "spelled" some really dark clouds for us all.......
So all is looking a lot brighter this week. I will be able to see the official test results tonight and compare the other readings.
Thanks for all your support and care and phone calls - the really really do help make this easier.
Wednesday, March 15, 2006
Here's Buzz!
This is the cutest doglet out! Owned and carefully guarded by Ms Laura and Steven. Even though he only weighs about a pound and a half, he keeps them both on their toes with his hyper activities, especially when they get home! This is a really sharp little animal with really sharp little teeth........... and a sharp mind too.
Tuesday, March 14, 2006
My Thoughts
I was terrified when I first read of all the possibilities that Stevens symptoms could mean. I could not eat or sleep and I worried myself into adding a good few thousand gray hairs. The Sunday before we got the official word that it is leukemia, I had to do something - thank goodness it was a beautiful day and Frank and I pulled out the tiller he tilled and I nearly killed the rose bush while it bit at my hands. Those few days passed in a haze. Then came the diagnosis and it felt as if something had sucked the life out of me - the only thing that worked were my tear ducts - and they worked well. And my mouth. What came out was probably not associated in any way with my mind, but I knew I talked a lot - especially while still at the hospital. A lot. And I laughed some too - I never knew I laughed like that when nervous/terrified/horrified etc.
Since I have been able to talk to people about this, and with the regular reading I am doing regarding this disease, and with the incredible support my family and friends are giving me, I am dealing with this better. Seeing Steven regularly helps too - he looks just the same. I so want things to turn back to "Before CML" and I swear to myself each time he comes in that I wont harp on this, rather treat things as 'normal'. But some or other flippin lecture always creeps in. Sometimes only in the form of quickly placed words "drink lots of water" or "avoid sick people" and sometimes more wordy stuff burbles out of my mouth.
I have to take my hat off to Steven, he takes this well without any 'oh mom's" - yet. Frank knows that most of my conversations revolve around Steven and the CML and the new medications and hopes and cures for this disease.
This is still scary for me. I refuse to hide from the words 'cancer' and 'leukemia', but I am learning to put them into the perspective of this form of it, believe what the research and doctors say and believe with all my heart that Steven will become an ornery old man of 89 one day!
When something like this disease attacks someone, an incredible number of people are affected, mostly positively. Some will make sure they have insurance coverage, others will go for blood tests and doctors visits sooner than planned and others simple let us all know what wonderful folks they are by showing us all possible support. If I was a vampire I could have the worlds greatest stock of blood from all the offers of testing for bone marrow compatibility! Its really been fantastic to see the positive reaction. And what has impressed me most is the way that Steven and Laura are handling this. They are not putting their plans on hold, they are not allowing this to get them down. Steven is still going to start college this year, he goes to work as normal as does Ms Laura and she already goes to college as well - they are honestly living thier life with both feet firmly planted on the ground and their whole heart - its wonderful to see.
I am a really fortunate mother. I have three amazing 'kids' all doing really great in their lives - they all have such positive outlooks in life, great attitudes and dreams.
Well, time to quit for now.
A really big thank you to everyone that has shown such amazing support, we really treasure it and, for me, makes this road a whole lot easier to walk.
Since I have been able to talk to people about this, and with the regular reading I am doing regarding this disease, and with the incredible support my family and friends are giving me, I am dealing with this better. Seeing Steven regularly helps too - he looks just the same. I so want things to turn back to "Before CML" and I swear to myself each time he comes in that I wont harp on this, rather treat things as 'normal'. But some or other flippin lecture always creeps in. Sometimes only in the form of quickly placed words "drink lots of water" or "avoid sick people" and sometimes more wordy stuff burbles out of my mouth.
I have to take my hat off to Steven, he takes this well without any 'oh mom's" - yet. Frank knows that most of my conversations revolve around Steven and the CML and the new medications and hopes and cures for this disease.
This is still scary for me. I refuse to hide from the words 'cancer' and 'leukemia', but I am learning to put them into the perspective of this form of it, believe what the research and doctors say and believe with all my heart that Steven will become an ornery old man of 89 one day!
When something like this disease attacks someone, an incredible number of people are affected, mostly positively. Some will make sure they have insurance coverage, others will go for blood tests and doctors visits sooner than planned and others simple let us all know what wonderful folks they are by showing us all possible support. If I was a vampire I could have the worlds greatest stock of blood from all the offers of testing for bone marrow compatibility! Its really been fantastic to see the positive reaction. And what has impressed me most is the way that Steven and Laura are handling this. They are not putting their plans on hold, they are not allowing this to get them down. Steven is still going to start college this year, he goes to work as normal as does Ms Laura and she already goes to college as well - they are honestly living thier life with both feet firmly planted on the ground and their whole heart - its wonderful to see.
I am a really fortunate mother. I have three amazing 'kids' all doing really great in their lives - they all have such positive outlooks in life, great attitudes and dreams.
Well, time to quit for now.
A really big thank you to everyone that has shown such amazing support, we really treasure it and, for me, makes this road a whole lot easier to walk.
Monday, March 13, 2006
March 13th '06
Hello there
Steven has been on Gleevec for a few days now. He says there are none of the side effects mentioned with the medication, but still gets tired easily.... hopefully he will be able to manage that really soon.
Friday we will go back to the doctor and will hopefully see an improvement in the white blood cell count.
Not much else to report for now, which is good news.
These past two weeks have been very strange and scary. Lisa had her cell phone stolen, Joleen joined the Marines, Frank has been called to jury duty and Steven and CML. How does one process all this? Positively! Lisa got a new phone today, Joleen is very excited about the Marines and we feel that this might just be the best thing for her, Frank will learn something and get to do something different for two weeks and Steven will just get better and better and react well to these meds. And I will keep posting updates on all of the above
:-)
Steven has been on Gleevec for a few days now. He says there are none of the side effects mentioned with the medication, but still gets tired easily.... hopefully he will be able to manage that really soon.
Friday we will go back to the doctor and will hopefully see an improvement in the white blood cell count.
Not much else to report for now, which is good news.
These past two weeks have been very strange and scary. Lisa had her cell phone stolen, Joleen joined the Marines, Frank has been called to jury duty and Steven and CML. How does one process all this? Positively! Lisa got a new phone today, Joleen is very excited about the Marines and we feel that this might just be the best thing for her, Frank will learn something and get to do something different for two weeks and Steven will just get better and better and react well to these meds. And I will keep posting updates on all of the above
:-)
Saturday, March 11, 2006
General info
I found this explanation on the web and thought it was very easy to understand and very informative - so you get it too:
According to updated study results presented at the 47th annual meeting of the American Society of Hematology (ASH), Gleevec® (imatinib mesylate) produces good long-term results when used for initial treatment of chronic-phase chronic myeloid leukemia (CML).
Chronic myeloid leukemia (CML), also called chronic granulocytic leukemia, is a cancer that originates in the immune cells. It affects approximately 4,600 people annually in the U.S.
In the case of CML, large numbers of young immune cells do not mature, resulting in an excess accumulation of these cells. These leukemia cells then crowd the bone marrow and blood, suppressing formation and function of other blood cells normally present in these areas. In addition, the leukemia cells cannot perform their function in the body properly, leaving patients susceptible to infection.
Chronic myeloid leukemia begins with a chronic phase, during which few clinical problems, if any, occur. However, when left untreated, the chronic phase progresses into acute phases; these phases are characterized by fast-growing and aggressive cancer and are called the accelerated and blastic phases. Patients reaching these acute phases have a poor prognosis for long-term survival.
Historically, the only curative option for patients with CML was an allogeneic stem cell transplant. However, treatment-related mortality, as well as side effects, can be substantial in patients undergoing an allogeneic stem cell transplant; researchers have thus focused efforts on curative treatment options that are more easily tolerated. Philadelphia chromosome-positive CML refers to the majority of cases of CML in which a genetic abnormality, referred to as the Philadelphia chromosome, results in constantly activated growth of cancer cells. Gleevec is a biological agent that binds to and slows or stops the uncontrolled growth of cancer cells with this genetic mutation. In addition, Gleevec has activity in several biological pathways implicated in the development and/or expression of cancer. An advantage of Gleevec over interferon alfa, another drug used to treat CML, is that Gleevec produces few side effects .
To compare Gleevec to interferon as the initial therapy for patients with newly diagnosed chronic-phase CML, an international group of researchers conducted a clinical trial in which 553 patients were assigned to receive Gleevec, and 553 were assigned to receive interferon. After 42 months of follow-up, 75% of the Gleevec patients remained on treatment, compared to only 4% of the interferon patients. The updated study results focus on the Gleevec patients.
Among patients treated with Gleevec, overall survival at 54 months was 90%. Survival varied by Sokal risk score (a tool to estimate CML prognosis); rates of survival ranged from 81% among patients with high-risk CML to 94% among patients with low-risk CML. Response to Gleevec played an important role in survival: Among patients with a complete cytogenetic response to Gleevec (complete disappearance of abnormal cells), survival was excellent among all Sokal risk groups. Among those with a complete cytogenetic response, survival ranged from 90% among those with high-risk CML to 97% among those with low-risk CML.
These updated results confirm that patients with chronic-phase CML who respond to Gleevec have good long-term outcomes. Other work by these researchers suggests that of the roughly 40% of patients who have a significant response to Gleevec after one year, many will continue to show a response after four years.
And this is another really good link.........
Vaccine Shows Promise Against Residual Chronic Myeloid Leukemia (12/27/05)
A normal white blood count is between 4000 and 10 000. Stevens wbc was 179 000 when he was diagnosed. Here are the other blood numbers:
WBC: 179000 Critically High
Red cell count 3.9 Low
Hemoglobin 12.0 Low
Hematocrit 35.1 Low
MCV 90.0
MCH 30.7
MCHC 34.2
Platelet Count 284
MPV 7.40
RDW 17.1 High
Neut% 93.4 High
Eosin % 1.0
Baso % 0.0
Lymph % 3.9 Low
mono % 1.7 Low
Lymph count 7.0 High
Mono Count 3.1 High
Neut Count 167.9 High
EO count (auto) 1.9
Baso count 0.0
Segs 24
Bands 15
Blasts 4
Please dont ask me to explain what these mean individually - I have reaserched and discovered that I am not much wiser, except in the big picture - obviously I still have a way to go to get to understand the exact meaning of what these counts and percentages mean in relation to the others. What I do know is that it is critical not to look at one reading and freak, or not freak. You have to look at them all, let the names and numbers soak into your brain, then give it up and listen to the doctor. And then, after numerous cups of coffee and a good few sleeping pills and long hours of rest, dig some more and sometime the light will begin to shine and a vague understanding creeps in.
More to come......................
According to updated study results presented at the 47th annual meeting of the American Society of Hematology (ASH), Gleevec® (imatinib mesylate) produces good long-term results when used for initial treatment of chronic-phase chronic myeloid leukemia (CML).
Chronic myeloid leukemia (CML), also called chronic granulocytic leukemia, is a cancer that originates in the immune cells. It affects approximately 4,600 people annually in the U.S.
In the case of CML, large numbers of young immune cells do not mature, resulting in an excess accumulation of these cells. These leukemia cells then crowd the bone marrow and blood, suppressing formation and function of other blood cells normally present in these areas. In addition, the leukemia cells cannot perform their function in the body properly, leaving patients susceptible to infection.
Chronic myeloid leukemia begins with a chronic phase, during which few clinical problems, if any, occur. However, when left untreated, the chronic phase progresses into acute phases; these phases are characterized by fast-growing and aggressive cancer and are called the accelerated and blastic phases. Patients reaching these acute phases have a poor prognosis for long-term survival.
Historically, the only curative option for patients with CML was an allogeneic stem cell transplant. However, treatment-related mortality, as well as side effects, can be substantial in patients undergoing an allogeneic stem cell transplant; researchers have thus focused efforts on curative treatment options that are more easily tolerated. Philadelphia chromosome-positive CML refers to the majority of cases of CML in which a genetic abnormality, referred to as the Philadelphia chromosome, results in constantly activated growth of cancer cells. Gleevec is a biological agent that binds to and slows or stops the uncontrolled growth of cancer cells with this genetic mutation. In addition, Gleevec has activity in several biological pathways implicated in the development and/or expression of cancer. An advantage of Gleevec over interferon alfa, another drug used to treat CML, is that Gleevec produces few side effects .
To compare Gleevec to interferon as the initial therapy for patients with newly diagnosed chronic-phase CML, an international group of researchers conducted a clinical trial in which 553 patients were assigned to receive Gleevec, and 553 were assigned to receive interferon. After 42 months of follow-up, 75% of the Gleevec patients remained on treatment, compared to only 4% of the interferon patients. The updated study results focus on the Gleevec patients.
Among patients treated with Gleevec, overall survival at 54 months was 90%. Survival varied by Sokal risk score (a tool to estimate CML prognosis); rates of survival ranged from 81% among patients with high-risk CML to 94% among patients with low-risk CML. Response to Gleevec played an important role in survival: Among patients with a complete cytogenetic response to Gleevec (complete disappearance of abnormal cells), survival was excellent among all Sokal risk groups. Among those with a complete cytogenetic response, survival ranged from 90% among those with high-risk CML to 97% among those with low-risk CML.
These updated results confirm that patients with chronic-phase CML who respond to Gleevec have good long-term outcomes. Other work by these researchers suggests that of the roughly 40% of patients who have a significant response to Gleevec after one year, many will continue to show a response after four years.
And this is another really good link.........
Vaccine Shows Promise Against Residual Chronic Myeloid Leukemia (12/27/05)
A normal white blood count is between 4000 and 10 000. Stevens wbc was 179 000 when he was diagnosed. Here are the other blood numbers:
WBC: 179000 Critically High
Red cell count 3.9 Low
Hemoglobin 12.0 Low
Hematocrit 35.1 Low
MCV 90.0
MCH 30.7
MCHC 34.2
Platelet Count 284
MPV 7.40
RDW 17.1 High
Neut% 93.4 High
Eosin % 1.0
Baso % 0.0
Lymph % 3.9 Low
mono % 1.7 Low
Lymph count 7.0 High
Mono Count 3.1 High
Neut Count 167.9 High
EO count (auto) 1.9
Baso count 0.0
Segs 24
Bands 15
Blasts 4
Please dont ask me to explain what these mean individually - I have reaserched and discovered that I am not much wiser, except in the big picture - obviously I still have a way to go to get to understand the exact meaning of what these counts and percentages mean in relation to the others. What I do know is that it is critical not to look at one reading and freak, or not freak. You have to look at them all, let the names and numbers soak into your brain, then give it up and listen to the doctor. And then, after numerous cups of coffee and a good few sleeping pills and long hours of rest, dig some more and sometime the light will begin to shine and a vague understanding creeps in.
More to come......................
Friday, March 10, 2006
The positives
This is a treatable disease and potentially cureable too.
Steven has medical insurance.
He does not live with us anymore - yet is really close by, which eliminates the total probability that I would smother him and be too much of a mother hen. Life must go on as normal as possible and I bet that it is easier for him this way. I know I would be a pain in the rear end.........to say the least.
We are really fortunate that, apart from the CML, Steven is physically healthy and strong. He has an incredible view to this disease and is emotionally strong too. He has not let this crush him - he goes to work, is out with his friends and by all accounts seems to be very positive about it all. Quite amazing for someone his age to be able to take this diagnosis and to keep going with such a wonderful outlook.
Ms Laura is a star! She is strong, wonderful, caring, loving, has a wonderful sense of humor and already threatening Steven with all sorts of potential horrors if he does not take his pills! He really is fortunate to have her. I am so proud of the way she is helping him with the CML, researching information on the internet and getting involved in an amazing way. She is his right hand through all this and I wish her all the strength she needs, and then an extra dose too. Please remember her in your prayers too - she is a Godsend. Her family is being fantastic as well, supporting, caring and loving, concerned and just plain great to Steven.
I am totally impressed with these two young people - totally impressed. My son is so much stronger than I could imagine - I am so very proud of him. I have been so totally blessed to have this child in my life. Blessed to have all three my children such wonderful people, such strong and determined young adults.
Frank is fantastic through all this. There are nights when I cannot sleep, when Nytol is the only way to get some rest. Frank holds me, lets me cry, croons and assures me that this is going to get better - much better. He is such an anchor, stable and reliable. He is comforting and sensible to the point where I want to bash him sometimes, but he is always there for me. He has tremendous respect and love for Steven and that night we heard that it was leukemia, he cried - saying that he would take it from Steven if he could. He somehow keeps things normal, refusing to let this take over my life and my mind, keeping me on an even keel. Quite a guy, he is. Quite a guy.
It has been amazing to see the web of people that have shown concern, caring and love in this situation. It is wonderful, strengthening and helps tremendously. I would like to ask you all to remember all those people out there struggling and living with cancer and other diseases that dont have the support we do - please remember them too.
So often no one knows how to react in a situation like this. This is also why I have made this site - you can leave comments and Steven and Laura and anyone else can get them at anytime. I will update this site with any important information as soon as it gets to us.
We are all looking for the 'normal' button - but it seems to have left us. Sometime it will come back, at least to some degree. But for now we try to deal a good dose of 'normal' in our daily lives as possible. Its difficult but worth a try, at the very least.
No doubt I will be sharing some more ramblings - I am finding that writing this does help me cope with this.....
For now - mbah.
:-)
Steven has medical insurance.
He does not live with us anymore - yet is really close by, which eliminates the total probability that I would smother him and be too much of a mother hen. Life must go on as normal as possible and I bet that it is easier for him this way. I know I would be a pain in the rear end.........to say the least.
We are really fortunate that, apart from the CML, Steven is physically healthy and strong. He has an incredible view to this disease and is emotionally strong too. He has not let this crush him - he goes to work, is out with his friends and by all accounts seems to be very positive about it all. Quite amazing for someone his age to be able to take this diagnosis and to keep going with such a wonderful outlook.
Ms Laura is a star! She is strong, wonderful, caring, loving, has a wonderful sense of humor and already threatening Steven with all sorts of potential horrors if he does not take his pills! He really is fortunate to have her. I am so proud of the way she is helping him with the CML, researching information on the internet and getting involved in an amazing way. She is his right hand through all this and I wish her all the strength she needs, and then an extra dose too. Please remember her in your prayers too - she is a Godsend. Her family is being fantastic as well, supporting, caring and loving, concerned and just plain great to Steven.
I am totally impressed with these two young people - totally impressed. My son is so much stronger than I could imagine - I am so very proud of him. I have been so totally blessed to have this child in my life. Blessed to have all three my children such wonderful people, such strong and determined young adults.
Frank is fantastic through all this. There are nights when I cannot sleep, when Nytol is the only way to get some rest. Frank holds me, lets me cry, croons and assures me that this is going to get better - much better. He is such an anchor, stable and reliable. He is comforting and sensible to the point where I want to bash him sometimes, but he is always there for me. He has tremendous respect and love for Steven and that night we heard that it was leukemia, he cried - saying that he would take it from Steven if he could. He somehow keeps things normal, refusing to let this take over my life and my mind, keeping me on an even keel. Quite a guy, he is. Quite a guy.
It has been amazing to see the web of people that have shown concern, caring and love in this situation. It is wonderful, strengthening and helps tremendously. I would like to ask you all to remember all those people out there struggling and living with cancer and other diseases that dont have the support we do - please remember them too.
So often no one knows how to react in a situation like this. This is also why I have made this site - you can leave comments and Steven and Laura and anyone else can get them at anytime. I will update this site with any important information as soon as it gets to us.
We are all looking for the 'normal' button - but it seems to have left us. Sometime it will come back, at least to some degree. But for now we try to deal a good dose of 'normal' in our daily lives as possible. Its difficult but worth a try, at the very least.
No doubt I will be sharing some more ramblings - I am finding that writing this does help me cope with this.....
For now - mbah.
:-)
Day one on Gleevec - 10th March '06
Last night we got Lisa up here to get her blood drawn at the local doctor to type test for a potential bone marrow match. If she is a perfect match, her bone marrow will be harvested and frozen in case Steven needs it down the road. This has put a great responsibility onto her and she has done fantastically by stopping smoking immediately! She will be going to the doctor to make sure that she is totally healthy and able to give up some of her marrow. It was not easy to get blood from her and we thought at one point that she was not human - she was pricked multiple times and would not bleed even one drop! So we took her to the hospital to get it done - they refused so we went to Physicians Care and the same doctor was there who treated Steven in the beginning of all this. What an amazing guy! He coaxed the much needed blood from Lisa, slowly but surely, while Frank held her hand - or rather she squeezed his, and I did paperwork and dared to look! This was the first time I actually looked at a needle going into someones arm without having to turn away.
Lisa was fantastic - I know she hates needles but she did this with a smile, hope and there were plenty of good vibes going into those tubes along with her blood.
Today the final blood tests on Steven came back positive for CML and not something worse or more difficult to treat, so he was able to go and get his pills. Gleevec costs $100 per pill and he has to take 1 pill a day = $3000.00 per month. His insurance is fantastic!
The bottles are small and unremarkable but so precious! He has been started on 400mg Gleevec and 300mg Allopurinol. Next week Friday is the next appointment and by then we should see the wbc normalising........
And so the treatment starts............... may it go smoothly and very very well.
Lisa was fantastic - I know she hates needles but she did this with a smile, hope and there were plenty of good vibes going into those tubes along with her blood.
Today the final blood tests on Steven came back positive for CML and not something worse or more difficult to treat, so he was able to go and get his pills. Gleevec costs $100 per pill and he has to take 1 pill a day = $3000.00 per month. His insurance is fantastic!
The bottles are small and unremarkable but so precious! He has been started on 400mg Gleevec and 300mg Allopurinol. Next week Friday is the next appointment and by then we should see the wbc normalising........
And so the treatment starts............... may it go smoothly and very very well.
VanDerBilt Hospital Nashville - 8th March
8th March we went to Nashville. Steven, Laura and I. Frank babysat their little puppy - simply the cutest doglet in the world, and kept the computer shop open.
We sat in the waiting room under the signs that read "Stem Cell Transplant Unit". It is unreal that we are involved in this stuff - its simply not right. Its simply not the way things should be. This is my child, dammit! He has stayed away from "the bad side" of all the temptations out there, he has lead an honest, clean life with work and personal ethics that are scarce in todays world - especially amongst this age group. He works for whatever he has and is just a really great person. It is not fair or right that this is happening to him! But we all know that life is not fair at all - it just is.
The specialist up at Vanderbilt Hospital was fantastic. He explained everything so clearly. Steven asked questions, I did and we got a clearer view of this monster. We can fight it! We will fight it. It is treatable and there is a really good shot at him even being cured if he goes for the bone marrow transplant, and maybe even through medications in the future. A transplant is not something we are looking at right now - the risks are fairly high and treatment with Gleevec will hopefully bring his blood count down and tame those crazy chromosomes.
I know that I felt better after talking to Doctor K - we understood more clearly that this was a 'good leukemia' to get, because it is treatable and with the new medications coming up, he has a really great chance of controlling this disease.
So now he starts taking Gleevec this week - 400mg dosage and we will all picture healthy chromosomes and healthy blood and great success in dealing with this disease.
We sat in the waiting room under the signs that read "Stem Cell Transplant Unit". It is unreal that we are involved in this stuff - its simply not right. Its simply not the way things should be. This is my child, dammit! He has stayed away from "the bad side" of all the temptations out there, he has lead an honest, clean life with work and personal ethics that are scarce in todays world - especially amongst this age group. He works for whatever he has and is just a really great person. It is not fair or right that this is happening to him! But we all know that life is not fair at all - it just is.
The specialist up at Vanderbilt Hospital was fantastic. He explained everything so clearly. Steven asked questions, I did and we got a clearer view of this monster. We can fight it! We will fight it. It is treatable and there is a really good shot at him even being cured if he goes for the bone marrow transplant, and maybe even through medications in the future. A transplant is not something we are looking at right now - the risks are fairly high and treatment with Gleevec will hopefully bring his blood count down and tame those crazy chromosomes.
I know that I felt better after talking to Doctor K - we understood more clearly that this was a 'good leukemia' to get, because it is treatable and with the new medications coming up, he has a really great chance of controlling this disease.
So now he starts taking Gleevec this week - 400mg dosage and we will all picture healthy chromosomes and healthy blood and great success in dealing with this disease.
The Diagnosis - 6th March '06
March 6th is a day that is as ingrained in my brain as are my childrens birthdays.
We went in to Dr C on Monday to get the results. His nurse stood next to Steven who was sitting on the table, and read these long, horrible words that I knew no one ever wants to hear. Stevens shoulders just sagged and he looked at the papers in his hands. I cannot imagine hearing those words at his age. I asked for it in plain english, understandable language, copeable language.
Steven interupted saying "so it is one of these leukemias." My heart broke. His world changed. My world changed. Everything changed. I cried, trying not to, knowing that I had to, but not too much. Just holding on. Steven sat reading the papers in his hand. Holding on in his way.
What happened to the days when a kiss and a band aid fixed things?
So we sat there, in shock, me quietly crying, Steven reading the papers he had in his hand, swallowing hard, not knowing how to go forward. The doctor came in and said that he was referring us to his own specialist up in Nashville, and that he had made the appointment for Wednesday 8th. Things were moving so fast.... too fast and yet too slowly. He sounded so casual, as if this was a normal day, that this diagnosis was not something to get all freaky about. This helped me tremendously, but also shook me up. How could something like this not be a weeping, wailing moment? No one there was fussing too much - all just telling us how to move forward - one step at a time. Specialist in Nashville and then the rest would happen. Take one step at a time. Breathe.
We had to go to the Pathology department deep in the heart of the hospital to get his bone marrow to take up to Nashville with us. We walked through that hospital saying things I don't remember. I had the distinct impression that I was being comforted by Steven more than I was able to comfort him. He held his head up, walked like a man, held onto me when I wobbled - now I know what a great, great, great grandma feels like! We picked up his marrow that was in a standard brown envelope on glass slides. We went home.
On the way we saw a man with a big white bushy beard, slightly flushed in his face, an enormous grin plastered all over his face, riding his bike down the busy highway....... we both laughed. It was a good tension breaker and nice to see that we had both held onto our sense of humor - even if it was, at least definately on my part, slightly hysterical. But that man made a wonderful moment in the car - it was great.
Steven dropped me off and we were supposed to carry on living life. By all accounts, he did superbly - he did not fall apart, he spoke to people on the phone, he played with the dog. Fantastic! He has an incredibly optimistic view of this whole thing, talks about it quite easily and is not letting it rule his life. His friends were told, the people at work know, everyone knows and he talks to everyone who calls. His ability to deal with this is way better than mine - at least the part he is showing. I am so proud of this son of mine - he is amazing, strong and positive - he is an inspiration to me.
And his bone marrow sat in the brown envelope on the chest of drawers next to the tv in our lounge. This should be illegal
We went in to Dr C on Monday to get the results. His nurse stood next to Steven who was sitting on the table, and read these long, horrible words that I knew no one ever wants to hear. Stevens shoulders just sagged and he looked at the papers in his hands. I cannot imagine hearing those words at his age. I asked for it in plain english, understandable language, copeable language.
Steven interupted saying "so it is one of these leukemias." My heart broke. His world changed. My world changed. Everything changed. I cried, trying not to, knowing that I had to, but not too much. Just holding on. Steven sat reading the papers in his hand. Holding on in his way.
What happened to the days when a kiss and a band aid fixed things?
So we sat there, in shock, me quietly crying, Steven reading the papers he had in his hand, swallowing hard, not knowing how to go forward. The doctor came in and said that he was referring us to his own specialist up in Nashville, and that he had made the appointment for Wednesday 8th. Things were moving so fast.... too fast and yet too slowly. He sounded so casual, as if this was a normal day, that this diagnosis was not something to get all freaky about. This helped me tremendously, but also shook me up. How could something like this not be a weeping, wailing moment? No one there was fussing too much - all just telling us how to move forward - one step at a time. Specialist in Nashville and then the rest would happen. Take one step at a time. Breathe.
We had to go to the Pathology department deep in the heart of the hospital to get his bone marrow to take up to Nashville with us. We walked through that hospital saying things I don't remember. I had the distinct impression that I was being comforted by Steven more than I was able to comfort him. He held his head up, walked like a man, held onto me when I wobbled - now I know what a great, great, great grandma feels like! We picked up his marrow that was in a standard brown envelope on glass slides. We went home.
On the way we saw a man with a big white bushy beard, slightly flushed in his face, an enormous grin plastered all over his face, riding his bike down the busy highway....... we both laughed. It was a good tension breaker and nice to see that we had both held onto our sense of humor - even if it was, at least definately on my part, slightly hysterical. But that man made a wonderful moment in the car - it was great.
Steven dropped me off and we were supposed to carry on living life. By all accounts, he did superbly - he did not fall apart, he spoke to people on the phone, he played with the dog. Fantastic! He has an incredibly optimistic view of this whole thing, talks about it quite easily and is not letting it rule his life. His friends were told, the people at work know, everyone knows and he talks to everyone who calls. His ability to deal with this is way better than mine - at least the part he is showing. I am so proud of this son of mine - he is amazing, strong and positive - he is an inspiration to me.
And his bone marrow sat in the brown envelope on the chest of drawers next to the tv in our lounge. This should be illegal
Pre Diagnosis
Steven did not even have a primary care doctor. He had the medical insurance because we made him get it when he got his bike. When he sold that, he wanted to drop the medical insurance, we did not let him. When he moved out of home at the beginning of February this year, he mentioned that he did not think he needed the insurance - but again he listened and kept it. Three weeks later he was diagnosed with Chronic Myelogenous Leukemia.
He started sounding 'snotty', sore throat and generally had symptoms of flu. Being Steven, he did not take medicine at first, waiting till it was firmly planted in his system and by then it just got out of hand. By the end of the week, he asked to go to the doctor. Laura hustled him off to Physicians Care where they jabbed him with antibiotics and did a blood test. He went back the next day for a follow up, got more blood taken by a doctor that recognised that something was not right. He sent the blood off for testing and Steven had to go back on the Monday when he was referred to the specialist. I will forever be grateful to the wonderful people at the Physician Care Walk In, for keeping their eyes open and following their gut feelings. It is because of this that this disease was caught so early. We are also very thankful that Steven got the flu badly enough to go and see a doctor.
So, on Monday, right after Frank and I reserved a camping spot right on the beach in Florida to test the new motorhome and to get some sunshine and beachwalking time, within an hour of paying for and confirming this reservation, Steven called saying that he had to go to the specialist as his white blood count was too high for the machines to register. Florida got cancelled.
I knew then that our road in life had just changed.
So on Thursday 2nd March, we met Dr C and Steven had his first bone marrow biopsy. We had to wait a long time for the pathologist to come and this built the tension quite badly. Steven got hungry and I got scared. Finally it was happening, I sat holding his hand while they dug into my eldest childs bones. Steven did great. It looked really uncomfortable and even sore, but he said that it was uncomfortable but not as bad as he had expected. He was smiling by the time they were finished and he turned over. I was green. The doctor and nurses were laughing at me, making sure I did not stand up and going to get something for us both to eat and drink. I felt really, really lousy. I could hear paper crinkle in my ears, and all other sounds dissappeared. An awful feeling. It was interesting that I only started feeling like this when they said they were finished and Steven said he was ok. Funny how the mind works......... A turkey sandwich and a soda later and we were both feeling much better. They took more blood and sent us on our way saying they would call us on Friday with some results. The pathologist was wonderful!
Friday came - they called, but for more blood and no results. That was awful. I knew that something was not right, I had researched on the internet and had a very strong feeling that this was/is leukemia, but all that information was just terrifying. I have no idea how Steven and Laura got through that weekend, I know that it was one of the longest, most awful weekends of my life. I had to do something and the rose bush outside looked like it needed attacking - it turned out that it attacked me before I got it trimmed. My hands look like a wild animal got hold of them. The 'pain' of the thorns ripping at my hands was comforting - it took my mind off the other pain in my soul. I am not going to guess at Stevens feelings, just going to tell it from my point of view. This is not a story about me, its just simply the story from my point of view.
I had told my family that Steven was having tests done for diabetes - no need to worry more people than necessary.
He started sounding 'snotty', sore throat and generally had symptoms of flu. Being Steven, he did not take medicine at first, waiting till it was firmly planted in his system and by then it just got out of hand. By the end of the week, he asked to go to the doctor. Laura hustled him off to Physicians Care where they jabbed him with antibiotics and did a blood test. He went back the next day for a follow up, got more blood taken by a doctor that recognised that something was not right. He sent the blood off for testing and Steven had to go back on the Monday when he was referred to the specialist. I will forever be grateful to the wonderful people at the Physician Care Walk In, for keeping their eyes open and following their gut feelings. It is because of this that this disease was caught so early. We are also very thankful that Steven got the flu badly enough to go and see a doctor.
So, on Monday, right after Frank and I reserved a camping spot right on the beach in Florida to test the new motorhome and to get some sunshine and beachwalking time, within an hour of paying for and confirming this reservation, Steven called saying that he had to go to the specialist as his white blood count was too high for the machines to register. Florida got cancelled.
I knew then that our road in life had just changed.
So on Thursday 2nd March, we met Dr C and Steven had his first bone marrow biopsy. We had to wait a long time for the pathologist to come and this built the tension quite badly. Steven got hungry and I got scared. Finally it was happening, I sat holding his hand while they dug into my eldest childs bones. Steven did great. It looked really uncomfortable and even sore, but he said that it was uncomfortable but not as bad as he had expected. He was smiling by the time they were finished and he turned over. I was green. The doctor and nurses were laughing at me, making sure I did not stand up and going to get something for us both to eat and drink. I felt really, really lousy. I could hear paper crinkle in my ears, and all other sounds dissappeared. An awful feeling. It was interesting that I only started feeling like this when they said they were finished and Steven said he was ok. Funny how the mind works......... A turkey sandwich and a soda later and we were both feeling much better. They took more blood and sent us on our way saying they would call us on Friday with some results. The pathologist was wonderful!
Friday came - they called, but for more blood and no results. That was awful. I knew that something was not right, I had researched on the internet and had a very strong feeling that this was/is leukemia, but all that information was just terrifying. I have no idea how Steven and Laura got through that weekend, I know that it was one of the longest, most awful weekends of my life. I had to do something and the rose bush outside looked like it needed attacking - it turned out that it attacked me before I got it trimmed. My hands look like a wild animal got hold of them. The 'pain' of the thorns ripping at my hands was comforting - it took my mind off the other pain in my soul. I am not going to guess at Stevens feelings, just going to tell it from my point of view. This is not a story about me, its just simply the story from my point of view.
I had told my family that Steven was having tests done for diabetes - no need to worry more people than necessary.
Why this blog?
I am going to try to share the story of the journey we have all started out on. We have quickly come to realize that CML affects everyone around the person that has this disease. I am going to try to share this road with everyone. It will be from my perspective which will probably not fully reflect what others are thinking or feeling, but so be it - I will do my best to keep this site updated with information on how Steven is doing, his test results, his reactions and general health and how we are all living with Steven having CML.
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