http://www.youtube.com/watch?v=KG9erSOVfPo&feature=youtube_gdata
you might try copy/paste if the link doesn't show up as an autolink.
I really identify closest to the 26 year old guy in the way he talks about his pain, swelling and other symptoms. Obviously this disease can effect many different parts of the body but his story seems closest to mine. Perhaps it is cause of our similarities in age and gender.
In His Grace alone!!
Luke
Sunday, November 15, 2009
A Name and info...
I finally heard my dr use a name I could look up and identify. Here's some info about my disorder more specifically...
Hypereosinophilic Syndrome (HES) is a group of disorders where very high numbers of eosinophils are found in peripheral blood counts (blood test) and organ tissue damage occurs. Unlike eosinophilic gastrointestinal disorders (EGID), which only affects the digestive tract, HES may affect any organ in the body. To diagnose HES, more than 1500 eosinophils/microliters must be found in the blood for more than six months with injury (damage) to organs. Chronic eosinophilic leukemia (CEL) means the eosinophils are clonal (all from the same cell line, identical).
Treatment of Hypereosinophilic Syndromes
Treatment of hypereosinophilic syndromes (HES) and chronic eosinophilic leukemia (CEL).
In the hypereosinophilic syndromes, high numbers of eosinophils are found in the blood and affect multiple organs in the body. This may include the stomach and intestines, the heart, lungs, skin and others. The eosinophils cause inflammation and eventually damage to the involved organs.
Treatment will vary based on type of disease, organs involved and disease severity.
1. Glucocorticoids (“Steroids”) Higher dose systemic (oral) steroids are often needed to control HES with organ involvement. Steroids are medications that fight (suppress) many types of inflammation. They are not specific for suppressing eosinophils, although eosinophils are particularly sensitive to them. Steroids can be taken intravenously (IV), or ingested orally. Systemic steroids, those that are absorbed into the bloodstream (oral or IV), are very effective for treating a number of eosinophilic disorders. Unfortunately, the disease may return when the steroids are stopped. Steroids given in this manner may have many harmful side effects when used for long periods of time. Serious side effects can include osteoporosis (brittle bones from bone loss), infections, adrenal insufficiency (body becomes unable to properly respond to illness or stress), avascular necrosis (collapse of the bones in a joint, usually the hip), and stunted growth. Common side effects may include fluid retention (swelling), increased appetite, “moon-face”, and irritability.
2. GleevecTM (Imatinib Mesylate) was developed to treat certain types of leukemia. Imatinib may induce remission in select types of HES. Not all patients with HES will respond to Imatinib. Genetic testing (for FIP1L1-PDGFRα gene rearrangement) can help determine if Gleevec is likely to help.
3. Calcineurin Inhibitors The calcineurin inhibitors include cyclosporine (Neoral®, Sandimmune®, Gengraf®) and tacrolimus (Prograf®). These are very potent medications that suppress the immune system by interfering with the function of T cells. They are used primarily to prevent organ rejection in people who have had organ transplants. They may also be of benefit in some patients with the hypereosinophilic syndrome. Because calcineurin inhibitors have a number of potentially harmful side effects, they are reserved for more severe and refractory (treatment-resistant) cases. Side effects include kidney failure, nerve damage, headaches, hair loss or excess growth, elevated cholesterol, high blood pressure, diabetes and development of cancer. Blood levels of these medications must be carefully monitored. Many other medications, particularly antibiotics, can affect the blood levels.
4. Anti-Neoplastic Agents Agents used to treat cancers are not specific for eosinophilic disorders, but may be helpful in some types of HES. These are potent medications with potentially harmful side effects and are reserved for more severe disease. Careful monitoring while taking these medications is very important.
Chemotherapeutic agents and approaches that have been used in HES include:
Methotrexate
Hydroxyurea
Cyclophosphamide
etoposide
Vincristine
Bone marrow transplant
Details of these potent medications are beyond the scope of this review. Further information can be found at www.cancereducation.com.
Tests to diagnose HES include a complete blood count and examination of other organs based on symptoms or other abnormal test results. Additional tests usually include a complete blood count and eosinophil count, blood samples for liver and kidney function, a blood test for Vitamin B12, erythrocyte sedimentation rate (general sign of inflammation), and a blood test for tryptase. Depending on symptoms and test results, other studies may be performed. For instance, ultrasound (echocardiography) is used to look at the function of the heart. A chest x-ray may be done to examine the lungs. As always, your medical team can best guide the necessary diagnostic tests on an individual basis.
Idiopathic Hypereosinophilic Syndrome
Criteria for diagnosis include:
1. Peripheral blood eosinophilia (high numbers of eosinophils in the blood) more than 1500 eosinophils/, for at least six months’ duration.
2. End-organ (heart, lungs, GI tract, brain, skin, etc) involvement with eosinophil tissue infiltration (invasion) and injury.
3. No other known causes for the eosinophilia (e.g. parasitic infections).
What are the prospects for people with HES?
Prospects for people with HES vary from person to person. It depends on how severe the disease is, which bodily organs are affected, and the success of treatment. In some cases, HES may be fatal.
Can HES be eliminated from the body?
HES cannot be eliminated, but it can often be treated.
How is HES treated?
Treatment of HES depends on which bodily organs are involved and how severe the disease is. The most common treatment for HES consists of high doses of steroids (medications in the cortisone family). Other treatments include medications that suppress the immune system, and anticancer therapies.
Hypereosinophilic Syndrome (HES) is a group of disorders where very high numbers of eosinophils are found in peripheral blood counts (blood test) and organ tissue damage occurs. Unlike eosinophilic gastrointestinal disorders (EGID), which only affects the digestive tract, HES may affect any organ in the body. To diagnose HES, more than 1500 eosinophils/microliters must be found in the blood for more than six months with injury (damage) to organs. Chronic eosinophilic leukemia (CEL) means the eosinophils are clonal (all from the same cell line, identical).
Treatment of Hypereosinophilic Syndromes
Treatment of hypereosinophilic syndromes (HES) and chronic eosinophilic leukemia (CEL).
In the hypereosinophilic syndromes, high numbers of eosinophils are found in the blood and affect multiple organs in the body. This may include the stomach and intestines, the heart, lungs, skin and others. The eosinophils cause inflammation and eventually damage to the involved organs.
Treatment will vary based on type of disease, organs involved and disease severity.
1. Glucocorticoids (“Steroids”) Higher dose systemic (oral) steroids are often needed to control HES with organ involvement. Steroids are medications that fight (suppress) many types of inflammation. They are not specific for suppressing eosinophils, although eosinophils are particularly sensitive to them. Steroids can be taken intravenously (IV), or ingested orally. Systemic steroids, those that are absorbed into the bloodstream (oral or IV), are very effective for treating a number of eosinophilic disorders. Unfortunately, the disease may return when the steroids are stopped. Steroids given in this manner may have many harmful side effects when used for long periods of time. Serious side effects can include osteoporosis (brittle bones from bone loss), infections, adrenal insufficiency (body becomes unable to properly respond to illness or stress), avascular necrosis (collapse of the bones in a joint, usually the hip), and stunted growth. Common side effects may include fluid retention (swelling), increased appetite, “moon-face”, and irritability.
2. GleevecTM (Imatinib Mesylate) was developed to treat certain types of leukemia. Imatinib may induce remission in select types of HES. Not all patients with HES will respond to Imatinib. Genetic testing (for FIP1L1-PDGFRα gene rearrangement) can help determine if Gleevec is likely to help.
3. Calcineurin Inhibitors The calcineurin inhibitors include cyclosporine (Neoral®, Sandimmune®, Gengraf®) and tacrolimus (Prograf®). These are very potent medications that suppress the immune system by interfering with the function of T cells. They are used primarily to prevent organ rejection in people who have had organ transplants. They may also be of benefit in some patients with the hypereosinophilic syndrome. Because calcineurin inhibitors have a number of potentially harmful side effects, they are reserved for more severe and refractory (treatment-resistant) cases. Side effects include kidney failure, nerve damage, headaches, hair loss or excess growth, elevated cholesterol, high blood pressure, diabetes and development of cancer. Blood levels of these medications must be carefully monitored. Many other medications, particularly antibiotics, can affect the blood levels.
4. Anti-Neoplastic Agents Agents used to treat cancers are not specific for eosinophilic disorders, but may be helpful in some types of HES. These are potent medications with potentially harmful side effects and are reserved for more severe disease. Careful monitoring while taking these medications is very important.
Chemotherapeutic agents and approaches that have been used in HES include:
Methotrexate
Hydroxyurea
Cyclophosphamide
etoposide
Vincristine
Bone marrow transplant
Details of these potent medications are beyond the scope of this review. Further information can be found at www.cancereducation.com.
Tests to diagnose HES include a complete blood count and examination of other organs based on symptoms or other abnormal test results. Additional tests usually include a complete blood count and eosinophil count, blood samples for liver and kidney function, a blood test for Vitamin B12, erythrocyte sedimentation rate (general sign of inflammation), and a blood test for tryptase. Depending on symptoms and test results, other studies may be performed. For instance, ultrasound (echocardiography) is used to look at the function of the heart. A chest x-ray may be done to examine the lungs. As always, your medical team can best guide the necessary diagnostic tests on an individual basis.
Idiopathic Hypereosinophilic Syndrome
Criteria for diagnosis include:
1. Peripheral blood eosinophilia (high numbers of eosinophils in the blood) more than 1500 eosinophils/, for at least six months’ duration.
2. End-organ (heart, lungs, GI tract, brain, skin, etc) involvement with eosinophil tissue infiltration (invasion) and injury.
3. No other known causes for the eosinophilia (e.g. parasitic infections).
What are the prospects for people with HES?
Prospects for people with HES vary from person to person. It depends on how severe the disease is, which bodily organs are affected, and the success of treatment. In some cases, HES may be fatal.
Can HES be eliminated from the body?
HES cannot be eliminated, but it can often be treated.
How is HES treated?
Treatment of HES depends on which bodily organs are involved and how severe the disease is. The most common treatment for HES consists of high doses of steroids (medications in the cortisone family). Other treatments include medications that suppress the immune system, and anticancer therapies.
Friday, November 13, 2009
Pain is back, but wait, there's so much better news...
"As the deer pants for streams of water
so my soul pants for You oh God.
My soul thirsts for God, for the Living God.
When can I go and meet with God?
My tears have been my food
day and night
while men say to me all day long,
'Where is your God?'
These things I remember as I poor out my soul:
how I used to go with the multitude,
leading with the procession to the house of God,
with shouts of joy and thanksgiving
among the festive throng.
Why are you downcast O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise Him,
my Savior and my God.
My soul is downcast within me;
therefore I will remember you
from the land of the Jordan,
the heights of Hermon-from Mount Mizar.
Deep calls to deep
in the roar of your waterfalls;
all your waves and breakers
have swept over me.
By day the
Lord directs His love,
at night His song is with me-
a prayer to the God of my life.
I say to God my Rock,
'Why have you forgotten me?
Why must I go about mourning,
oppressed by the enemy?
My bones suffer mortal agony
as my foes taunt me
saying to me all day long,
'Where is your God?'
Why are you so downcast O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise Him,
my Savior and my God."
Psalm 42. A Psalm of David. May His Word penetrate our hearts and lead us to give Him all the praise, all the glory and all the honor.
Amen.
so my soul pants for You oh God.
My soul thirsts for God, for the Living God.
When can I go and meet with God?
My tears have been my food
day and night
while men say to me all day long,
'Where is your God?'
These things I remember as I poor out my soul:
how I used to go with the multitude,
leading with the procession to the house of God,
with shouts of joy and thanksgiving
among the festive throng.
Why are you downcast O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise Him,
my Savior and my God.
My soul is downcast within me;
therefore I will remember you
from the land of the Jordan,
the heights of Hermon-from Mount Mizar.
Deep calls to deep
in the roar of your waterfalls;
all your waves and breakers
have swept over me.
By day the
Lord directs His love,
at night His song is with me-
a prayer to the God of my life.
I say to God my Rock,
'Why have you forgotten me?
Why must I go about mourning,
oppressed by the enemy?
My bones suffer mortal agony
as my foes taunt me
saying to me all day long,
'Where is your God?'
Why are you so downcast O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise Him,
my Savior and my God."
Psalm 42. A Psalm of David. May His Word penetrate our hearts and lead us to give Him all the praise, all the glory and all the honor.
Amen.
Thursday, November 12, 2009
Feeling better...
So, whether it's the "tide-me over drug" called Hydrea, or the fact that my pain has just gone away, or perhaps it's all the awesome 'prayers of the Saints' out there (thank you!!!), my pain has diminished significantly!!! I haven't had to take any pain medication since yesterday morning, and even now, my pain level is about a 2 or 3, rather than 8 or 9. Such a blessing. I began taking the Hydrea med. 3 times a day yesterday, and I think by last night, it had kicked in. It is helping a lot, and its nice to be able to function without taking the drowsy pain medication.
Also, dealing with this new drug Sprycel hopefully will be a tad bit easier than getting the Gleevec medicine. I contacted Bristol-Myers who makes the Sprycel drug, and they actually don't have a "co-pay assistance program", but rather a patient assistance program. Which basically means that they don't help pay for any of it unless you 1. don't have health insurance or 2. your insurance denies you for that drug. Well, whether or not it's a "good thing", my insurance DID deny me. Ha-maybe the first time that I am actually glad that my insurance was being difficult! So, I have applied for assistance for Sprycel and hopefully will know in a few days if I receive help or not. Hopefully so, because just like Gleevec, Sprycel can be extremely expensive per month. Haha, I wish that I could trade the Gleevec pills I have left for cash! Perhaps sell them on the black market?! Hey, I'm a starving artist, don't judge me!! :)
Anyways, thank you all again for prayers, support and words of encouragement. Your words have really meant a lot to me, whether on text, facebook, comments on here, or to my parents. I pray God allows me to see all of you at some point in the near future and thank you in person. God is good, and has given me Joy in the midst of life's crazy circumstances. Thanks for reminding me of the many reasons I have to be JOYFUL!
In His Grace and Love,
Luke
Also, dealing with this new drug Sprycel hopefully will be a tad bit easier than getting the Gleevec medicine. I contacted Bristol-Myers who makes the Sprycel drug, and they actually don't have a "co-pay assistance program", but rather a patient assistance program. Which basically means that they don't help pay for any of it unless you 1. don't have health insurance or 2. your insurance denies you for that drug. Well, whether or not it's a "good thing", my insurance DID deny me. Ha-maybe the first time that I am actually glad that my insurance was being difficult! So, I have applied for assistance for Sprycel and hopefully will know in a few days if I receive help or not. Hopefully so, because just like Gleevec, Sprycel can be extremely expensive per month. Haha, I wish that I could trade the Gleevec pills I have left for cash! Perhaps sell them on the black market?! Hey, I'm a starving artist, don't judge me!! :)
Anyways, thank you all again for prayers, support and words of encouragement. Your words have really meant a lot to me, whether on text, facebook, comments on here, or to my parents. I pray God allows me to see all of you at some point in the near future and thank you in person. God is good, and has given me Joy in the midst of life's crazy circumstances. Thanks for reminding me of the many reasons I have to be JOYFUL!
In His Grace and Love,
Luke
Tuesday, November 10, 2009
Gleevec out, sprycel in...
Hey. So this is from my phone so won't be long, but needed to update now especially cause I'm feeling ok for the time being. This past weekend I had begun to feel bad again. Not horrible, but about a three on the pain scale. Then yesterday (Monday), it started getting really bad again. I called my dr and they said to come in and do bloodwork to see what my counts were. Then I went back this morning to talk to him about the results. My hurting always coincides with my white blood counts being elevated, so I wasn't surprised when it was 33,000. As well as my red blood cells being low and kidney function a bit elevated as well. I told dr I hadn't been feeling good and he said he didn't think the Gleevec was working and he was going to switch me to another similar medicene called Sprycel. We would see if that worked in the next weeks and if not, possibly push the transplant up sooner. I told him I am fine with pushing it up because I just want to start feeling better. Hopefully this new med will work. Anyways, so when I left his office today he told me he wanted me to get about a gallon of fluids before I left to hopefully make me feel better. So two hours later, I was on my way to teach class when all of a sudden my pain jumped to a 9. It was all I could do to drive home, take a hydrocodine and crawl into bed. I canceled the rest of my commitments for today and mom and dad decided they would come stay at least tonight to help out, and I didn't object. They're here now which is a huge blessing. Again, thanks for your prayers and hopefully this new medication will be the one. If not, looks like we might do transplant earlier, but we will see.
My pastors sermon Sunday was on having joy in all circumstances. Whew-God knew I needed to hear that!!
Love and Grace,
Luke
My pastors sermon Sunday was on having joy in all circumstances. Whew-God knew I needed to hear that!!
Love and Grace,
Luke
Saturday, October 24, 2009
Feelin' Good...
Went to see the dr. yesterday. Good news! My white blood count is down to 24,000. Previously before this at my last appt it had been 37,000, so this was great news. I have also been feeling really good lately which has been a huge blessing. So my dr. said that it is pretty clear that the Gleevec medicene is helping which is great. However, he did discuss with me the possibility of doing a transplant sometime next year, perhaps in the summer. We will keep watching my counts, and I will keep going back to him monthly right now to monitor everything and make sure it doesn't get worse. But he said that because I'm young/healthy, he thinks it's wise for me to get the transplant soon, because #1, it would cure me, and #2, if I didn't get it, and just took Gleevec or another med for the rest of my life, (which would be imperative), there is a risk that it could develop into Acute Leukimia or something more serious than right now. Obviously there are risk factors doing the transplant, but he thinks because of my age it's better to go ahead with it. So, nothing is really set in stone at this point, but it looks like I might be doing the transplant next summer. What would this entail? Well, I would have to carve out about 3 months of my schedule to do it. I'd have to get chemotherapy for 6-8 days, then be in the hospital for almost 3 weeks, receive the new bone marrow, and then for about 2 months come back and forth to the hospital for checkups and monitoring. The highest risk factor of the transplant if after they wipe out the white blood cells, because I wouldn't have anything to fight off any type of infection with.
Thank you all for your continued prayers and support. Your prayers are felt every day. I hope to see all of you at some point over the holiday season and thank you in person!
By His Grace Alone,
Luke
Thank you all for your continued prayers and support. Your prayers are felt every day. I hope to see all of you at some point over the holiday season and thank you in person!
By His Grace Alone,
Luke
Thursday, October 1, 2009
mmmmmmmmmmmkay...
Hey! It's been a while, but that usually is a good thing, b/c not much has happened. I wrote last time about some intermitent pain. The last couple of weeks, the pain levels have varied from 3-7 or so. I have taken the pain medication they gave me a couple of times, although I don't enjoy taking it because it knocks me out, but try to take just advil if I can stand it. My doctor had upped my dosage of Gleevec last dr visit to 400 mg a day, wanting to see what effect that had on me. Well, because I had been on 100 mg a day, I ran out of the pills in a few days, with no refills because I was still getting everything worked out with the Novardis company who is paying (thankfully!) for my Gleevec prescriptions for the next year. So there was a period of about 3 days I wasn't getting any medications. I saw the doctor yesterday after having some more intense bone pain, especially around my ribs, and my white blood count was up again to 37,000. Obviously, not going in the direction we would like because two weeks before it was at 21,000. Also, my red blood cells were really low. Doc said this would definitley cause me to feel bad as well as exhausted, both of which I have been. And although I was not glad about feeling that way, at least I had an explanation for the feelings. So, doc said it could have been those 3 days off the meds that were the result of the pain/higher counts. He is keeping me at 400 mg for now and seeing how that effects me.
Also, in good news, they found a donor for me!!! Sometimes this process can take months but praise the Lord they have found a perfect match for all my tissue HLA typings. That is good in case the Gleevec ends up not working or isn't doing the job as fast as doc would like.
Thank you for all your continued support. God bless all of you and please let me know how I can pray for you.
Luke
Also, in good news, they found a donor for me!!! Sometimes this process can take months but praise the Lord they have found a perfect match for all my tissue HLA typings. That is good in case the Gleevec ends up not working or isn't doing the job as fast as doc would like.
Thank you for all your continued support. God bless all of you and please let me know how I can pray for you.
Luke
Subscribe to:
Posts (Atom)