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Chrisj CMA
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« Reply #40 on: February 24, 2018, 07:14:11 PM » |
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Holy Cow! Man, I'm sorry to hear about this. I'm sending prayers your way from SE Wisconsin.
Take care Jeff and listen to the doctors.
Loth
don't listen to the doctors too much. In 2010, the Office of Inspector General for Health and Human Services said that bad hospital care contributed to the deaths of 180,000 patients in Medicare alone in a given year. Now comes a study in the current issue of the Journal of Patient Safety that says the numbers may be much higher 2014 between 210,000 and 440,000 patients each year who go to the hospital for care suffer some type of preventable harm that contributes to their death, the study says. https://www.scientificamerican.com/article/how-many-die-from-medical-mistakes-in-us-hospitals/they wanted to do radiation, gamma knife for my tumor. I said no way. too many documented cases of the tumor growing larger or becoming malignant. I personally know someone who had a tumor like mine over 20 yrs ago. they did the gamma knife, the tumor started growing larger, so they had to operate to remove it. told him 50/50 chance becoming paralyzed. he's been in a wheel chair ever since. this guy was an olympic level shot putter, before this happened. where I get my intravenous therapy, there is a woman who had the same tumor. she did the gamma knife, which almost removed the tumor completely. well two yrs later she now has cancer in another part of her body from the radiation. read www.drday.com for more info if interested. Well, I have the physical symptoms that verify the criminal is the spleen and the problem is low platelets. I don't like the medicine I am on and neither does my doctor. But it appears to be working for now. I still think I will need a spleen removal operation. This isn't bad medical care. It's a bad spleen and we're trying to fix it with tried and proven methods. I do however share you scepticism of doctors in general. Thanks |
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rancher
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« Reply #41 on: February 25, 2018, 12:22:07 PM » |
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First off........my prayers are with you.
My story is much like yours.......For over three plus years I have watched my white blood count slowly rise. My RBC's and platelets have slowly been crowded out by my WBC's. I have been a patient at M D Anderson for over two years with an initial diagnosis of CLL....... My spleen was/is huge. I've been blood sampled over and over, PET / CT scanned numerous times, bone marrow pathology done numerous times, chromosome mapped several times, blood marker analysis several times, etc.......all while watching and waiting........finally early this year they zeroed in on not CLL but B cell lymphoma and more specific MZL...marginal zone lymphoma. I finally started treatment a couple of weeks ago. I am now in a three drug clinical research trial at MDA for the next year + three year follow-up.
I understand your situation.....I'm there too. If you wish to compare notes, details, or just talk things through just let me know. If not I understand as all this can be rather personal. Rancher
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Chrisj CMA
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« Reply #42 on: February 25, 2018, 01:14:40 PM » |
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First off........my prayers are with you.
My story is much like yours.......For over three plus years I have watched my white blood count slowly rise. My RBC's and platelets have slowly been crowded out by my WBC's. I have been a patient at M D Anderson for over two years with an initial diagnosis of CLL....... My spleen was/is huge. I've been blood sampled over and over, PET / CT scanned numerous times, bone marrow pathology done numerous times, chromosome mapped several times, blood marker analysis several times, etc.......all while watching and waiting........finally early this year they zeroed in on not CLL but B cell lymphoma and more specific MZL...marginal zone lymphoma. I finally started treatment a couple of weeks ago. I am now in a three drug clinical research trial at MDA for the next year + three year follow-up.
I understand your situation.....I'm there too. If you wish to compare notes, details, or just talk things through just let me know. If not I understand as all this can be rather personal. Rancher
Ya it's a wild ride for sure. I will ask about the B cell lymphoma. Last year I convinced my doctor to send me for surgery to remove a growing lymph node and have it examined. It was the largest and fastest growing of the enlarged nodes. Seemed to be purely cll which made me and my doctor happy. I have to tell you about the huge spleen. Last Thursday mine was reaching to near the naval. After 4 days of high dose Prednisone it's very noticably smaller and softer. Still if it needs long term steroid's to maintain long term contoll that thing is coming out. I pray your trial produces great results. This whole thing sucks doesn't it. Thanks for sharing your story. |
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« Last Edit: February 25, 2018, 01:16:23 PM by Chrisj CMA »
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98valk
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« Reply #43 on: February 25, 2018, 02:49:51 PM » |
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First off........my prayers are with you.
My story is much like yours.......For over three plus years I have watched my white blood count slowly rise. My RBC's and platelets have slowly been crowded out by my WBC's. I have been a patient at M D Anderson for over two years with an initial diagnosis of CLL....... My spleen was/is huge. I've been blood sampled over and over, PET / CT scanned numerous times, bone marrow pathology done numerous times, chromosome mapped several times, blood marker analysis several times, etc.......all while watching and waiting........finally early this year they zeroed in on not CLL but B cell lymphoma and more specific MZL...marginal zone lymphoma. I finally started treatment a couple of weeks ago. I am now in a three drug clinical research trial at MDA for the next year + three year follow-up.
I understand your situation.....I'm there too. If you wish to compare notes, details, or just talk things through just let me know. If not I understand as all this can be rather personal. Rancher
Ya it's a wild ride for sure. I will ask about the B cell lymphoma. Last year I convinced my doctor to send me for surgery to remove a growing lymph node and have it examined. It was the largest and fastest growing of the enlarged nodes. Seemed to be purely cll which made me and my doctor happy. I have to tell you about the huge spleen. Last Thursday mine was reaching to near the naval. After 4 days of high dose Prednisone it's very noticably smaller and softer. Still if it needs long term steroid's to maintain long term contoll that thing is coming out. I pray your trial produces great results. This whole thing sucks doesn't it. Thanks for sharing your story. ask the docs for Predilone. this is what the body uses and which the liver has to convert the prednisone to. just cost slightly more but less side effects esp water drinking due to the conversion process not needed now which cause the increased thirst. |
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1998 Std/Tourer, 2007 DR200SE, 1981 CB900C 10speed
1973 Duster 340 4-speed rare A/C, 2001 F250 4x4 7.3L, 6sp
"Our Constitution was made only for a Moral and Religious people. It is wholly inadequate to the goverment of any other."
John Adams 10/11/1798
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oldsmokey
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« Reply #44 on: February 25, 2018, 03:04:00 PM » |
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Prayers for the recovery and healing. Go easy. No more excitement needed.
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Robert
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« Reply #45 on: February 25, 2018, 05:01:13 PM » |
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Prayers from S Fla
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“Some people see things that are and ask, Why? Some people dream of things that never were and ask, Why not? Some people have to go to work and don’t have time for all that.”
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henry 008
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BRP
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« Reply #46 on: February 26, 2018, 06:58:22 AM » |
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sorry to hear about this! God bless you Jeff and your caregivers. prayers from NC Ohio for you and your family  |
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Chrisj CMA
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« Reply #47 on: February 26, 2018, 07:34:06 AM » |
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OK, back from the blood test. Platelets up a little and climbing so no transfusion today. I do another one on Thursday. Were hoping for a lasting solution without surgery but I still will want that spleen out if it wont decide to play nice. So were on a wait and see. Thank you all for the prayers and well wishes, keep it up, I guess this isn't going to be a quick fix.
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98valk
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« Reply #48 on: February 26, 2018, 09:59:13 AM » |
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get that tech manual out the Lord gave to us and turn to James 5:13 -15 13 Is anyone among you afflicted (ill-treated, suffering evil)? He should pray. Is anyone glad at heart? He should sing praise [to God]. 14 Is anyone among you sick? He should call in the church elders (the spiritual guides). And they should pray over him, anointing him with oil in the Lord’s name. 15 And the prayer [that is] of faith will save him who is sick, and the Lord will restore him; and if he has committed sins, he will be forgiven. https://www.biblegateway.com/passage/?search=James+5&version=AMPHe heals today as He always has. He doesn't change. I'm a witness to that for myself and others. |
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1998 Std/Tourer, 2007 DR200SE, 1981 CB900C 10speed
1973 Duster 340 4-speed rare A/C, 2001 F250 4x4 7.3L, 6sp
"Our Constitution was made only for a Moral and Religious people. It is wholly inadequate to the goverment of any other."
John Adams 10/11/1798
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« Reply #49 on: February 26, 2018, 02:29:20 PM » |
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Just want to remind you our Lord can heal, I'm living proof. It will soon be 8 months since I ask the forum for prayer and now I am minus all the cancer and 20% of my kidney. I have ridden the bike twice since the surgery and am continuing to get my strengh back.Thank you for all you have helped me with through the years and of course I will keep you in my prayers. Be strong in the Lord my brother.
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Chrisj CMA
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« Reply #50 on: February 26, 2018, 03:04:27 PM » |
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What a club. You don't get this kind of encouragement just anywhere. I feel healing I'm claiming healing and when it's all healed God will get all the glory.
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98valk
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« Reply #51 on: February 26, 2018, 03:14:24 PM » |
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Just want to remind you our Lord can heal, I'm living proof. It will soon be 8 moths since I ask the forum for prayer and now I am minus all the cancer and 20% of my kidney. I have ridden the bike twice since the surgery and am continuing to get my strengh back.Thank you for all you have helped me with through the years and of course I will keep you in my prayers. Be strong in the Lord my brother.
Praise the Lord!!! |
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1998 Std/Tourer, 2007 DR200SE, 1981 CB900C 10speed
1973 Duster 340 4-speed rare A/C, 2001 F250 4x4 7.3L, 6sp
"Our Constitution was made only for a Moral and Religious people. It is wholly inadequate to the goverment of any other."
John Adams 10/11/1798
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98valk
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« Reply #52 on: February 26, 2018, 03:15:03 PM » |
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What a club. You don't get this kind of encouragement just anywhere. I feel healing I'm claiming healing and when it's all healed God will get all the glory.
Amen to that!!! Praise the Lord!!! |
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1998 Std/Tourer, 2007 DR200SE, 1981 CB900C 10speed
1973 Duster 340 4-speed rare A/C, 2001 F250 4x4 7.3L, 6sp
"Our Constitution was made only for a Moral and Religious people. It is wholly inadequate to the goverment of any other."
John Adams 10/11/1798
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Avanti
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« Reply #53 on: February 26, 2018, 03:38:26 PM » |
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Jeff, I will be praying for you.
Put you on a prayer chain.
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gregk
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« Reply #54 on: February 26, 2018, 07:14:19 PM » |
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Jeff, take care an I hope the best for you.
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Flrider
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« Reply #55 on: February 26, 2018, 10:32:08 PM » |
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Jeff
I could not make the central Florida gathering at Jerry's during your last visit, I wish you a full and speedy recovery and hope to shake hands in the near future when you get back to riding.
Take care and keep us posted
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Flat6Valk
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« Reply #56 on: February 27, 2018, 12:56:20 AM » |
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Jeff,
You have many friends pulling for you. I am one. Good Luck. God Bless.
Greg
FlatValk6
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RIDE SAFE-RIDE OFTEN........GO BUCKEYES!!!
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RDAbull
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« Reply #57 on: February 27, 2018, 04:11:23 AM » |
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What a club. You don't get this kind of encouragement just anywhere. I feel healing I'm claiming healing and when it's all healed God will get all the glory.
I'm with you on this one Chris, but that will really honk the Drs off. Good. Prayers from SW Ohio for a speedy recovery. |
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2015 GoldWing Trike
1999 Valkyrie Interstate Trike, gone but not forgotten
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Tailgate Tommy
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2000 Interstate, 2001 Interstate and 2003 Standard
Fort Collins, Colorado
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« Reply #58 on: February 27, 2018, 06:24:44 AM » |
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Jeff, Thoughts and prayer for a speedy recovery.
Tom
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Savage
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« Reply #59 on: February 28, 2018, 06:20:51 PM » |
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Jeff, One warrior to another, you better not think for a moment that you're allowed to go out in a hospital bed!!  Don't make me come all the way out to Florida just to ensure that you go with your boots on. Neither of us got time for that, and you have riding left to do.  Gear up. |
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Chrisj CMA
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« Reply #60 on: March 01, 2018, 04:51:32 AM » |
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Jeff, One warrior to another, you better not think for a moment that you're allowed to go out in a hospital bed!! Don't make me come all the way out to Florida just to ensure that you go with your boots on. Neither of us got time for that, and you have riding left to do. Gear up. You're absolutely right. Don't tell my doctor but I rode to church last night and it was glorious even though it was a light rain. Ride safe |
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Savage
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« Reply #61 on: March 01, 2018, 08:48:19 AM » |
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Jeff, One warrior to another, you better not think for a moment that you're allowed to go out in a hospital bed!! Don't make me come all the way out to Florida just to ensure that you go with your boots on. Neither of us got time for that, and you have riding left to do. Gear up. You're absolutely right. Don't tell my doctor but I rode to church last night and it was glorious even though it was a light rain. Ride safe I remember one time when I came back to the US, first chance I got I climbed on the Valk (which immediately fired up like she had just been waiting for me 6 months, mind you!!!) and rode down the hill from my house to the highway. The moment I hit the entrance ramp, I rolled it on hard and went flying down that sunny California road. Felt so good it literally brought tears to my eyes. Do what feels good - especially now. Ain't no worryin' or pussy-footin' around that's gonna make you feel better about being alive. You and I have both had a lot of close calls. If they have anything to teach us, it's to LIVE while you've got the chance. Much love. |
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Chrisj CMA
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« Reply #62 on: March 01, 2018, 09:21:12 AM » |
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OK so, Just had another blood test. Progress albeit small...platelets up a couple points. Not all that impressive, so we will see what it does next week. May have to change things up if not better numbers on Wed. Until then I'm not stopping anything, living each day! Keep up the prayers that this will straighten out without the most drastic measures.............Thanks everyone.  |
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Hook#3287
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« Reply #63 on: March 01, 2018, 05:01:05 PM » |
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Good luck Jeff.
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Chrisj CMA
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« Reply #64 on: March 04, 2018, 12:23:46 PM » |
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Ok so in the morning the adventure starts. I take a six hour IV to put in a medicine that attacks the bad white cells. Also several blood tests to re evaluate what actual chemo will be started in a weeks time.
So tomorrow is the great start of this adventure. Thanks for the prayers and good thoughts, keep them up as I go. I have peace believing its in Gods hands and he can guide the doctors and help the medication work.
I want to be stronger very soon. Being a bleeding risk really is not all that fun.
Judy and I did have a very nice ride to Church today and with the carb sync done recently she sure is running smooth it was like a new bike.
Live each day. Might be my new motto!
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The emperor has no clothes
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« Reply #65 on: March 04, 2018, 12:33:57 PM » |
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Ok so in the morning the adventure starts. I take a six hour IV to put in a medicine that attacks the bad white cells. Also several blood tests to re evaluate what actual chemo will be started in a weeks time.
So tomorrow is the great start of this adventure. Thanks for the prayers and good thoughts, keep them up as I go. I have peace believing its in Gods hands and he can guide the doctors and help the medication work.
I want to be stronger very soon. Being a bleeding risk really is not all that fun.
Judy and I did have a very nice ride to Church today and with the carb sync done recently she sure is running smooth it was like a new bike.
Live each day. Might be my new motto!
Take care  Hopefully it will be over before you know it. |
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98valk
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« Reply #66 on: March 04, 2018, 02:27:27 PM » |
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Ok so in the morning the adventure starts. I take a six hour IV to put in a medicine that attacks the bad white cells. Also several blood tests to re evaluate what actual chemo will be started in a weeks time.
So tomorrow is the great start of this adventure. Thanks for the prayers and good thoughts, keep them up as I go. I have peace believing its in Gods hands and he can guide the doctors and help the medication work.
I want to be stronger very soon. Being a bleeding risk really is not all that fun.
Judy and I did have a very nice ride to Church today and with the carb sync done recently she sure is running smooth it was like a new bike.
Live each day. Might be my new motto!
chemo is the worst thing u can do. it kills everything even healthy cells. high % it will make u worst. don't listen the those doctors, u are nothing more than a money making guinea pig for them when they talk chemo. read www.drday.com she is a Christian. |
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1998 Std/Tourer, 2007 DR200SE, 1981 CB900C 10speed
1973 Duster 340 4-speed rare A/C, 2001 F250 4x4 7.3L, 6sp
"Our Constitution was made only for a Moral and Religious people. It is wholly inadequate to the goverment of any other."
John Adams 10/11/1798
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Chrisj CMA
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« Reply #67 on: March 04, 2018, 03:23:34 PM » |
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Ok so in the morning the adventure starts. I take a six hour IV to put in a medicine that attacks the bad white cells. Also several blood tests to re evaluate what actual chemo will be started in a weeks time.
So tomorrow is the great start of this adventure. Thanks for the prayers and good thoughts, keep them up as I go. I have peace believing its in Gods hands and he can guide the doctors and help the medication work.
I want to be stronger very soon. Being a bleeding risk really is not all that fun.
Judy and I did have a very nice ride to Church today and with the carb sync done recently she sure is running smooth it was like a new bike.
Live each day. Might be my new motto!
chemo is the worst thing u can do. it kills everything even healthy cells. high % it will make u worst. don't listen the those doctors, u are nothing more than a money making guinea pig for them when they talk chemo. read www.drday.com she is a Christian. I pretty much agree with you on this. However, all the alternative treatments I have researched say they slow the progression, Im all of a sudden progressed to the danger zone. I like my doctor and my brother is a doctor at a large Denver hospital. Many separate opinions agree. I'm going to trust them. Supposedly this treatment has a very good track record. So unless a miracle happens with the blood test (which I am praying for) a week from tomorrow will probably be chemo. But thank you so much I do appreciate your advice |
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Avanti
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« Reply #68 on: March 04, 2018, 05:53:56 PM » |
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Praying for your miracle! |
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Chrisj CMA
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« Reply #69 on: March 05, 2018, 12:15:47 PM » |
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Ok everyone. Had the first six hr IV. Not the real chemo yet. But, I told my dr she has till the middle of June to get my blood strong enough to ride to VA. Told Judy if the dr comes through I’m going to pop in at Inzane to see all youse in person that have blessed me so much with prayers and positive thoughts.
Thank you so much
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DDT (12)
Member
Posts: 4120
Sometimes ya just gotta go...
Winter Springs, FL - Occasionally...
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« Reply #70 on: March 05, 2018, 04:36:24 PM » |
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Jeff,
Proud of the way you're taking all of this in stride and facing such a terrifying prospect! My best to you and QD, and the prayers from my 'mobile' home will continue... Oh, and thanks for keeping us posted on all of this...
DDT
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Don't just dream it... LIVE IT!
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saddlesore
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« Reply #71 on: March 05, 2018, 08:59:46 PM » |
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I haven't been on the board much but when I check the board I sure don't like reading things like this.
Wishing you the best, stay strong.
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Chrisj CMA
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« Reply #72 on: March 16, 2018, 11:15:54 AM » |
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Time for an update. So blood test today had good and bad news. The out of control white cells are down by half. Red cells and hemoglobin holding steady. BUT the platelets were down to nine after a brief climb into the double digits. So they gave me another bag of platelets and this time I don't have to go back for 11 days. Longest they let me out of their sight yet lol. So overall I see it as a step forward... One step closer to being able to make Inzane!  |
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henry 008
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BRP
willard, oh
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« Reply #73 on: March 16, 2018, 11:46:59 AM » |
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keep that positive attitude Jeff keep the faith, God Bless |
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Safe Winds... Brother |
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Chrisj CMA
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« Reply #74 on: April 26, 2018, 04:38:13 PM » |
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First off........my prayers are with you.
My story is much like yours.......For over three plus years I have watched my white blood count slowly rise. My RBC's and platelets have slowly been crowded out by my WBC's. I have been a patient at M D Anderson for over two years with an initial diagnosis of CLL....... My spleen was/is huge. I've been blood sampled over and over, PET / CT scanned numerous times, bone marrow pathology done numerous times, chromosome mapped several times, blood marker analysis several times, etc.......all while watching and waiting........finally early this year they zeroed in on not CLL but B cell lymphoma and more specific MZL...marginal zone lymphoma. I finally started treatment a couple of weeks ago. I am now in a three drug clinical research trial at MDA for the next year + three year follow-up.
I understand your situation.....I'm there too. If you wish to compare notes, details, or just talk things through just let me know. If not I understand as all this can be rather personal. Rancher
Ya it's a wild ride for sure. I will ask about the B cell lymphoma. Last year I convinced my doctor to send me for surgery to remove a growing lymph node and have it examined. It was the largest and fastest growing of the enlarged nodes. Seemed to be purely cll which made me and my doctor happy. I have to tell you about the huge spleen. Last Thursday mine was reaching to near the naval. After 4 days of high dose Prednisone it's very noticably smaller and softer. Still if it needs long term steroid's to maintain long term contoll that thing is coming out. I pray your trial produces great results. This whole thing sucks doesn't it. Thanks for sharing your story. Ok, I had to search to find this to post an update. Finally got all the re-test test results in. So there is no B-cell (aggressive) strain CLL which is very good. Also the type of CLL I have (least dangerous) can mutate to a more dangerous one, but mine hasn't. Today's blood test is so normal you would have thought I paid for the results. Well, all except the platelets. They have doubled in the last 2 weeks but that's 6K to 12K and were looking for 180K. My Dr said its not unusual to start slow like this for the platelets and then rapidly increase progress. That's what were looking for right now. So a long way to go but making slow and steady progress. White cells went from 390K to 6K (6K is perfectly normal) Second round of chemo Monday and next blood test next Thursday. I think that will be my decision day for registering for INZANE if that's not too late..... |
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signart
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« Reply #75 on: April 26, 2018, 05:33:38 PM » |
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Good to read that things are going in the right direction Keeping you in our prayers. |
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flsix
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« Reply #76 on: April 26, 2018, 05:33:54 PM » |
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Jeff apparently I haven't been paying attention to the board enough because I just noticed this. Really sorry you are going through this. By today's post it sounds like things may be heading in the right direction though. Will be praying for a full and quick recovery.
Jeff
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2013 F6B
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rancher
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« Reply #77 on: April 26, 2018, 05:57:51 PM » |
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Great news. Glad to hear you had good results. Positive thoughts and prayers for you.
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