Guest guest Posted February 16, 2009 Report Share Posted February 16, 2009 Hi This is again- I had radiofrequency done about 4 weeks ago to my right SI joint and it has helped with the SI joint pain. The Doc radioed L5 through S3 on the right. However I am still having sciatica and toe fasiculations of my 2,3rd toes on the right side. The Orthopedic specialist whom I sought out in Baltimore for a second opinion seems to think that part of my problem in my Lumbar is that my Pedicules are very small. She thinks that the break done in the lumbar discs and bone spurring that has formed in the Right SI joint is from instability in the Lumbar. I can tell that any type of extension really sets of the sciatica-radiculopathy down the right leg- whether its in the Dentist chair them having you put down low and back, or being in the pool trying to swim- causing numbness in both feet, or too much laundry and house work. Since this has been going on for a good 5 or more years (and not had surgery) Im wondering if fusion would give me the stability to stop those leg and foot symptoms and allow me to do things like swim again. My lumbar MRI's dont look bad- small central herniation at L5, small annular tear at L4, dehydration noted at L3 and small central herniation at T12. The Orthopedist thinks that if I could have an MRI sitting down it might show more. I will say that Radiofrequency has helped the level of pain in the SI joint, but not the leg symptoms. What are your thoughts about instability in Lumbar and does Fusion help with that? I am 44 now, soon to be 45- and thinking about the next step since this has been going on quite awhile now. Have a Discogram scheduled for March 9th. in DC. thanks! (unknown) spinedisorderssuppo rtgroup@gro ups.com Date: Monday, February 16, 2009, 11:49 AM I have had a tens unit for a year. It helps somewhat but it also causes my skin to rash. I have used ice, heat, tens, and prayer but nothing takes away the pain. Life is what happens to you while you're busy making other plans. ( Lennon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2009 Report Share Posted February 16, 2009 it gives an electronic pulsing that causes your pain center to be blocked in order to help you not hurt so much (unknown) spinal problems Date: Monday, February 16, 2009, 11:49 AM I have had a tens unit for a year. It helps somewhat but it also causes my skin to rash. I have used ice, heat, tens, and prayer but nothing takes away the pain. Life is what happens to you while you're busy making other plans. ( Lennon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2009 Report Share Posted February 16, 2009 So, I have a crazy story. I had a doctors appointment today. I got there, and the first thing the doctor pulled out was a tens machine. I thought that it was so strange that I asked about it today, and then the doctor gave me one today! This thing is driving me crazy. I am finding it to be more annoying than the pain, but he is insisting that I wear it nonstop until Wednesday morning! Anyway, Have a great night everyone! Hugs, April (unknown) spinal problems Date: Monday, February 16, 2009, 11:49 AM I have had a tens unit for a year. It helps somewhat but it also causes my skin to rash. I have used ice, heat, tens, and prayer but nothing takes away the pain. Life is what happens to you while you're busy making other plans. ( Lennon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2009 Report Share Posted February 16, 2009 That is kinda weird huh Sent from my Verizon Wireless BlackBerry Re: (unknown) So, I have a crazy story. I had a doctors appointment today. I got there, and the first thing the doctor pulled out was a tens machine. I thought that it was so strange that I asked about it today, and then the doctor gave me one today! This thing is driving me crazy. I am finding it to be more annoying than the pain, but he is insisting that I wear it nonstop until Wednesday morning! Anyway, Have a great night everyone! Hugs, April (unknown) spinal problems Date: Monday, February 16, 2009, 11:49 AM I have had a tens unit for a year. It helps somewhat but it also causes my skin to rash. I have used ice, heat, tens, and prayer but nothing takes away the pain. Life is what happens to you while you're busy making other plans. ( Lennon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2009 Report Share Posted February 16, 2009 Hi April, I used a tens unit in Physical therapy and then bought my own, it helps sometimes to take your mind off the other pain, but I have found (as I told my Doc ) who tells me to wear it everyday``all day``that you get used to it and it realy doesn't help much. Sometimes during very bad pain it helps alittle. But as you say it can be problem, especially since I need someone to help me apply the patches because my range of motion is limited and I can't reach behind me to apply it. But they like you to at least try it out! Good luck with it!~~Donna In a message dated 2/17/09 12:42:00 AM Eastern Standard Time, nanny04@... writes: > So, I have a crazy story. I had a doctors appointment today. I got there, > and the first thing the doctor pulled out was a tens machine. I thought > that it was so strange that I asked about it today, and then the doctor > gave me one today! This thing is driving me crazy. I am finding it to be > more annoying than the pain, but he is insisting that I wear it nonstop > until Wednesday morning! Anyway, Have a great night everyone! Hugs, April > > > > > > ************** A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1218822736x1201267884/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=fe bemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 Dear Donna, Thanks for your response on the tens machine. My doctor told me to use it 24 hours a day until Wednesday. I woke up in the middle of the night,and my heart was racing and I couldnt breathe. Have you experienced this before? My doctor did not give me much information about this machine. I was just told to use it. Do you have any background info on it that I should know about? Thanks for your time! April ----- ,nal Message ----- From: MysticMaidenxx@... spinal problems Subject: Re: (unknown) Date: Tue, 17 Feb 2009 06:08:07 EST Hi April, I used a tens unit in Physical therapy and then bought my own, it helps sometimes to take your mind off the other pain, but I have found (as I told my Doc ) who tells me to wear it everyday``all day``that you get used to it and it realy doesn't help much. Sometimes during very bad pain it helps alittle. But as you say it can be problem, especially since I need someone to help me apply the patches because my range of motion is limited and I can't reach behind me to apply it. But they like you to at least try it out! Good luck with it!~~Donna In a message dated 2/17/09 12:42:00 AM Eastern Standard Time, nanny04@... writes: > So, I have a crazy story. I had a doctors appointment today. I got there, > and the first thing the doctor pulled out was a tens machine. I thought > that it was so strange that I asked about it today, and then the doctor > gave me one today! This thing is driving me crazy. I am finding it to be > more annoying than the pain, but he is insisting that I wear it nonstop > until Wednesday morning! Anyway, Have a great night everyone! Hugs, April > > > > > > ************** A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1218822736x1201267884/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=fe bemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 Actually, I just saw one of those crazy commercials yesterday...very surprising! On Wed, Feb 18, 2009 at 10:56 AM, Michele <mb_rogue@...> wrote: > Except for aspergers autism paper and these groups ive heard nothing of > it. HOWEVER, i saw a can of chefboyrdee the other day that had high > fructose cory syrup highlighted like allergens, but that is the only > thing/product ive seen like that. and theyve pulled all of those ridiculous > commercials that were on tv in summer/fall about how HFCS is as safe as > sugar and totally natural. Would love to know more about that though and I > think we should ban that and dyes...etc etc > But anything that says made with caustic soda and adds mercury should by > the govts words be not permitted in food sources! > > Michele > http://www.myspace/com/mbrogue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 As far as devices are concerned, I would say the Russian Scenar is the best, if you can find someone who knows how to use one. Acupuncture and herbs (yan hu suo) are the best things that I have used for pain. (unknown) spinedisorderssuppo rtgroup@gro ups.com Date: Monday, February 16, 2009, 11:49 AM I have had a tens unit for a year. It helps somewhat but it also causes my skin to rash. I have used ice, heat, tens, and prayer but nothing takes away the pain. Life is what happens to you while you're busy making other plans. ( Lennon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Could be generating heat. Did you have unusually vivid dreams? There are herbs for that, as well as point prescriptions. You could try something cooling, like peppermint. Re: (unknown) > Date: Tue, 17 Feb 2009 06:08:07 EST > > Hi April, > I used a tens unit in Physical therapy and then bought my own, it > helps > sometimes to take your mind off the other pain, but I have found (as > I told > my Doc ) who > tells me to wear it everyday``all day``that you get used to it and it > realy > doesn't help > much. Sometimes during very bad pain it helps alittle. But as you say > it can > be problem, > especially since I need someone to help me apply the patches because > my > range of motion is limited and I can't reach behind me to apply it. > But they like > you to at least try it out! Good luck with it!~~Donna > > In a message dated 2/17/09 12:42:00 AM Eastern Standard Time, > nanny04@... writes: > > > So, I have a crazy story. I had a doctors appointment today. I got > there, > > and the first thing the doctor pulled out was a tens machine. I > thought > > that it was so strange that I asked about it today, and then the > doctor > > gave me one today! This thing is driving me crazy. I am finding it > to be > > more annoying than the pain, but he is insisting that I wear it > nonstop > > until Wednesday morning! Anyway, Have a great night everyone! Hugs, > April > > > > > > > > > > > > > > ************** > A Good Credit Score is 700 or Above. See yours in just 2 easy > steps! > > (http://pr.atwola.com/promoclk/100126575x1218822736x1201267884/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=fe > bemailfooterNO62) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Bobby, To to photos and go to add photos, then go to add new. If your cant get it send them to me and I will post them for you. Aloha Sharon _____ From: [mailto: ] On Behalf Of ROBERTA DOYLE Sent: Thursday, February 19, 2009 5:00 PM Subject: [ ] (unknown) Hi, if someone will tell me how, I would like to post a picture. Bobby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 what works thte best is making crystal essence and using aormatherpay combined...its very awesome (unknown) spinedisorderssuppo rtgroup@gro ups.com Date: Monday, February 16, 2009, 11:49 AM I have had a tens unit for a year. It helps somewhat but it also causes my skin to rash. I have used ice, heat, tens, and prayer but nothing takes away the pain. Life is what happens to you while you're busy making other plans. ( Lennon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Crystal Essense? (unknown) spinedisorderssuppo rtgroup@gro ups.com Date: Monday, February 16, 2009, 11:49 AM I have had a tens unit for a year. It helps somewhat but it also causes my skin to rash. I have used ice, heat, tens, and prayer but nothing takes away the pain. Life is what happens to you while you're busy making other plans. ( Lennon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 yes it is an elixir made from crystals, to make liquid crystals. (unknown) spinedisorderssuppo rtgroup@gro ups.com Date: Monday, February 16, 2009, 11:49 AM I have had a tens unit for a year. It helps somewhat but it also causes my skin to rash. I have used ice, heat, tens, and prayer but nothing takes away the pain. Life is what happens to you while you're busy making other plans. ( Lennon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 What does this do for it? (unknown) spinedisorderssuppo rtgroup@gro ups.com Date: Monday, February 16, 2009, 11:49 AM I have had a tens unit for a year. It helps somewhat but it also causes my skin to rash. I have used ice, heat, tens, and prayer but nothing takes away the pain. Life is what happens to you while you're busy making other plans. ( Lennon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 it gives the crystal healing to the potion you are making. the power of the crystal blends with the aromatherapy (unknown) spinedisorderssuppo rtgroup@gro ups.com Date: Monday, February 16, 2009, 11:49 AM I have had a tens unit for a year. It helps somewhat but it also causes my skin to rash. I have used ice, heat, tens, and prayer but nothing takes away the pain. Life is what happens to you while you're busy making other plans. ( Lennon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Sharon, thanks for the instructions, but where do I find " add photos " ? I would like to try myself first,, if I can't I'll send them to you, but I need a little more help. Thanks, Bobby a (Bobby) Doyle From: Sharon & Denny <onthewtr@...> Subject: RE: [ ] (unknown) Date: Friday, February 20, 2009, 2:03 AM Bobby, To to photos and go to add photos, then go to add new. If your cant get it send them to me and I will post them for you. Aloha Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of ROBERTA DOYLE Sent: Thursday, February 19, 2009 5:00 PM Subject: [ ] (unknown) Hi, if someone will tell me how, I would like to post a picture. Bobby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Ok Bobby, Go to " Photo " from this page (on the right) Then on the left go to " Home " Then go to " Photo " again Then over on the right you will see " add Photo " Let me know if u get that far. Sharon _____ From: [mailto: ] On Behalf Of ROBERTA DOYLE Sent: Friday, February 20, 2009 6:10 AM Subject: RE: [ ] (unknown) Sharon, thanks for the instructions, but where do I find " add photos " ? I would like to try myself first,, if I can't I'll send them to you, but I need a little more help. Thanks, Bobby a (Bobby) Doyle From: Sharon & Denny <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net> Subject: RE: [ ] (unknown) groups (DOT) <mailto:%40> com Date: Friday, February 20, 2009, 2:03 AM Bobby, To to photos and go to add photos, then go to add new. If your cant get it send them to me and I will post them for you. Aloha Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of ROBERTA DOYLE Sent: Thursday, February 19, 2009 5:00 PM Subject: [ ] (unknown) Hi, if someone will tell me how, I would like to post a picture. Bobby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 / 273. I go every three months for routine blood work and PCR My platelet count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450 x10 9/L what ever that means??? Thanks Eva From: Tracey Sent: Friday, February 20, 2009 11:56 AM Subject: [ ] (unknown) Hi Eva, Have you not had any blood tests at all between November and February? That's a long time to go between blood tests for someone who is fairly newly diagnosed. I had CBC's done with LTF (liver function test) every 4-6 weeks for the first couple of years. Do you have the reference range for your LD? I've seen some reference ranges with the upper limit being 200 and other reference ranges being 600. Either way, your LD is a bit high. Did you have your ALP done? If your ALP is also really high it might mean that your liver is being strained with the Gleevec. The LD alone, doesn't specifically indicate that the liver is the culprit though because it could be high for a number of reasons. If it does turn out to be your liver, don't panic, there are options for you out there. Also, do you have your platelet count? I'm curious why your MPV went up so much since the last test. There are so many options out there for you if you have a problem tolerating Gleevec so try not to worry. Tracey > > Had a doc appt. yesterday and I am a little scared . My onc has stopped my 400mg Gleevec for the time being and I go back on March 9. > Nov 08 Feb 09 > LKCS4.4 LKCS 2.8 > Neutro 1.7 Neutro 1.0 > MPV 6.6 MPV 69 > AST 29 AST 273 > LD 712 LD 922 > > She felt my abdomen and told me not to freak out but that my # " s were all over the place.. > > Eva > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 First of all I will say Eva you need to have blood work done once a month and PCR done every three months. Talk to your doctor about that!!!! Aloha Sharon _____ From: [mailto: ] On Behalf Of Eva Sent: Friday, February 20, 2009 10:36 AM Subject: Re: [ ] (unknown) Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 / 273. I go every three months for routine blood work and PCR My platelet count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450 x10 9/L what ever that means??? Thanks Eva From: Tracey Sent: Friday, February 20, 2009 11:56 AM groups (DOT) <mailto:%40> com Subject: [ ] (unknown) Hi Eva, Have you not had any blood tests at all between November and February? That's a long time to go between blood tests for someone who is fairly newly diagnosed. I had CBC's done with LTF (liver function test) every 4-6 weeks for the first couple of years. Do you have the reference range for your LD? I've seen some reference ranges with the upper limit being 200 and other reference ranges being 600. Either way, your LD is a bit high. Did you have your ALP done? If your ALP is also really high it might mean that your liver is being strained with the Gleevec. The LD alone, doesn't specifically indicate that the liver is the culprit though because it could be high for a number of reasons. If it does turn out to be your liver, don't panic, there are options for you out there. Also, do you have your platelet count? I'm curious why your MPV went up so much since the last test. There are so many options out there for you if you have a problem tolerating Gleevec so try not to worry. Tracey > > Had a doc appt. yesterday and I am a little scared . My onc has stopped my 400mg Gleevec for the time being and I go back on March 9. > Nov 08 Feb 09 > LKCS4.4 LKCS 2.8 > Neutro 1.7 Neutro 1.0 > MPV 6.6 MPV 69 > AST 29 AST 273 > LD 712 LD 922 > > She felt my abdomen and told me not to freak out but that my # " s were all over the place.. > > Eva > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Sharon, My onc says that once I was stable then every 3 months is all that is needed . Yesterday when she got these new results she said for me to come back on March 16 and to take no medications until then , I had to insist on seeing her soon because of my results so she said she would see me to repeat my blood work on March 9th. She said that she thought my results were out of whack because maybe I had picked up some kind of bug but she nor her nurse even took my temp.My PCR have been done every 3 months and they were showing good results. I have got myself all wound up I could not even face going to work today. I am a little excitable I think. All of this stuff still scares me so much. Thanks Eva From: Sharon & Denny Sent: Friday, February 20, 2009 1:50 PM Subject: RE: [ ] (unknown) First of all I will say Eva you need to have blood work done once a month and PCR done every three months. Talk to your doctor about that!!!! Aloha Sharon _____ From: [mailto: ] On Behalf Of Eva Sent: Friday, February 20, 2009 10:36 AM Subject: Re: [ ] (unknown) Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 / 273. I go every three months for routine blood work and PCR My platelet count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450 x10 9/L what ever that means??? Thanks Eva From: Tracey Sent: Friday, February 20, 2009 11:56 AM groups (DOT) <mailto:%40> com Subject: [ ] (unknown) Hi Eva, Have you not had any blood tests at all between November and February? That's a long time to go between blood tests for someone who is fairly newly diagnosed. I had CBC's done with LTF (liver function test) every 4-6 weeks for the first couple of years. Do you have the reference range for your LD? I've seen some reference ranges with the upper limit being 200 and other reference ranges being 600. Either way, your LD is a bit high. Did you have your ALP done? If your ALP is also really high it might mean that your liver is being strained with the Gleevec. The LD alone, doesn't specifically indicate that the liver is the culprit though because it could be high for a number of reasons. If it does turn out to be your liver, don't panic, there are options for you out there. Also, do you have your platelet count? I'm curious why your MPV went up so much since the last test. There are so many options out there for you if you have a problem tolerating Gleevec so try not to worry. Tracey > > Had a doc appt. yesterday and I am a little scared . My onc has stopped my 400mg Gleevec for the time being and I go back on March 9. > Nov 08 Feb 09 > LKCS4.4 LKCS 2.8 > Neutro 1.7 Neutro 1.0 > MPV 6.6 MPV 69 > AST 29 AST 273 > LD 712 LD 922 > > She felt my abdomen and told me not to freak out but that my # " s were all over the place.. > > Eva > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 We all know how you feel Eva. I myself have been t here. My LDH was so high once I convinced myself I was going to die. But I didn't. And it was because the medication was giving a false reading . that is why they would have me go back in two weeks at that time. Then my PTH was just high about two months ago and I was convinced I had cancer in my thyroid or my throat or somewhere else. But then they put me on Vit D (50,000 iu's once a week) and now I am normal and just taking 2000iu once a day. I tell you CML is very disturbing but I really think your Doctor needs to watch you closer. You are going to be off Gleevec for a Month? I guess they want to see if this is causing it all. I do not have an answer for you but someone else in this group may. But don't worry. If I were you I would ask to have my blood done again in two weeks. Your platets are very low. Were they concerned about that? When I was on Gleevec my platlets got very low also. Geevec gave me a lot of trouble. Rash all over my body was the worst and it lasted the whole time I was on it. (6 months) so they took me off it and waited 2 weeks and started me on Sprycel. The rash went away. So you see everyone reacts differently to each medication. I know exactly how you feel. When I get bad results I hibernate and just sleep and read and do not want to even talk to anyone, But life is good with CML. We are alive and just a few years ago you would die from it. If this does not work for you then there are many many options out there. I am sure it is the gleevec causing all of this sturmoil with y our blood tests. Take care and ask us anything y ou want. Aloha Sharon _____ From: [mailto: ] On Behalf Of Eva Sent: Friday, February 20, 2009 11:22 AM Subject: Re: [ ] (unknown) Hi Sharon, My onc says that once I was stable then every 3 months is all that is needed . Yesterday when she got these new results she said for me to come back on March 16 and to take no medications until then , I had to insist on seeing her soon because of my results so she said she would see me to repeat my blood work on March 9th. She said that she thought my results were out of whack because maybe I had picked up some kind of bug but she nor her nurse even took my temp.My PCR have been done every 3 months and they were showing good results. I have got myself all wound up I could not even face going to work today. I am a little excitable I think. All of this stuff still scares me so much. Thanks Eva From: Sharon & Denny Sent: Friday, February 20, 2009 1:50 PM groups (DOT) <mailto:%40> com Subject: RE: [ ] (unknown) First of all I will say Eva you need to have blood work done once a month and PCR done every three months. Talk to your doctor about that!!!! Aloha Sharon _____ From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Eva Sent: Friday, February 20, 2009 10:36 AM groups (DOT) <mailto:%40> com Subject: Re: [ ] (unknown) Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 / 273. I go every three months for routine blood work and PCR My platelet count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450 x10 9/L what ever that means??? Thanks Eva From: Tracey Sent: Friday, February 20, 2009 11:56 AM groups (DOT) <mailto:%40> com Subject: [ ] (unknown) Hi Eva, Have you not had any blood tests at all between November and February? That's a long time to go between blood tests for someone who is fairly newly diagnosed. I had CBC's done with LTF (liver function test) every 4-6 weeks for the first couple of years. Do you have the reference range for your LD? I've seen some reference ranges with the upper limit being 200 and other reference ranges being 600. Either way, your LD is a bit high. Did you have your ALP done? If your ALP is also really high it might mean that your liver is being strained with the Gleevec. The LD alone, doesn't specifically indicate that the liver is the culprit though because it could be high for a number of reasons. If it does turn out to be your liver, don't panic, there are options for you out there. Also, do you have your platelet count? I'm curious why your MPV went up so much since the last test. There are so many options out there for you if you have a problem tolerating Gleevec so try not to worry. Tracey > > Had a doc appt. yesterday and I am a little scared . My onc has stopped my 400mg Gleevec for the time being and I go back on March 9. > Nov 08 Feb 09 > LKCS4.4 LKCS 2.8 > Neutro 1.7 Neutro 1.0 > MPV 6.6 MPV 69 > AST 29 AST 273 > LD 712 LD 922 > > She felt my abdomen and told me not to freak out but that my # " s were all over the place.. > > Eva > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 gotcha! I posted one of Moxi playing in the snow with her donut toy and one of my family at xmas, minus me, the photographer. Thanks, Bobby From: Sharon & Denny <onthewtr@...> Subject: RE: [ ] (unknown) Date: Friday, February 20, 2009, 2:03 AM Bobby, To to photos and go to add photos, then go to add new. If your cant get it send them to me and I will post them for you. Aloha Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of ROBERTA DOYLE Sent: Thursday, February 19, 2009 5:00 PM Subject: [ ] (unknown) Hi, if someone will tell me how, I would like to post a picture. Bobby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Thank you so much Sharon. The only think different I have been doing is I started taking 1000 mg of vitamin D last November. I am feeling a little better .. You guys always calm me down. God Bless; Eva From: Sharon & Denny Sent: Friday, February 20, 2009 2:35 PM Subject: RE: [ ] (unknown) We all know how you feel Eva. I myself have been t here. My LDH was so high once I convinced myself I was going to die. But I didn't. And it was because the medication was giving a false reading . that is why they would have me go back in two weeks at that time. Then my PTH was just high about two months ago and I was convinced I had cancer in my thyroid or my throat or somewhere else. But then they put me on Vit D (50,000 iu's once a week) and now I am normal and just taking 2000iu once a day. I tell you CML is very disturbing but I really think your Doctor needs to watch you closer. You are going to be off Gleevec for a Month? I guess they want to see if this is causing it all. I do not have an answer for you but someone else in this group may. But don't worry. If I were you I would ask to have my blood done again in two weeks. Your platets are very low. Were they concerned about that? When I was on Gleevec my platlets got very low also. Geevec gave me a lot of trouble. Rash all over my body was the worst and it lasted the whole time I was on it. (6 months) so they took me off it and waited 2 weeks and started me on Sprycel. The rash went away. So you see everyone reacts differently to each medication. I know exactly how you feel. When I get bad results I hibernate and just sleep and read and do not want to even talk to anyone, But life is good with CML. We are alive and just a few years ago you would die from it. If this does not work for you then there are many many options out there. I am sure it is the gleevec causing all of this sturmoil with y our blood tests. Take care and ask us anything y ou want. Aloha Sharon _____ From: [mailto: ] On Behalf Of Eva Sent: Friday, February 20, 2009 11:22 AM Subject: Re: [ ] (unknown) Hi Sharon, My onc says that once I was stable then every 3 months is all that is needed . Yesterday when she got these new results she said for me to come back on March 16 and to take no medications until then , I had to insist on seeing her soon because of my results so she said she would see me to repeat my blood work on March 9th. She said that she thought my results were out of whack because maybe I had picked up some kind of bug but she nor her nurse even took my temp.My PCR have been done every 3 months and they were showing good results. I have got myself all wound up I could not even face going to work today. I am a little excitable I think. All of this stuff still scares me so much. Thanks Eva From: Sharon & Denny Sent: Friday, February 20, 2009 1:50 PM groups (DOT) <mailto:%40> com Subject: RE: [ ] (unknown) First of all I will say Eva you need to have blood work done once a month and PCR done every three months. Talk to your doctor about that!!!! Aloha Sharon _____ From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Eva Sent: Friday, February 20, 2009 10:36 AM groups (DOT) <mailto:%40> com Subject: Re: [ ] (unknown) Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 / 273. I go every three months for routine blood work and PCR My platelet count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450 x10 9/L what ever that means??? Thanks Eva From: Tracey Sent: Friday, February 20, 2009 11:56 AM groups (DOT) <mailto:%40> com Subject: [ ] (unknown) Hi Eva, Have you not had any blood tests at all between November and February? That's a long time to go between blood tests for someone who is fairly newly diagnosed. I had CBC's done with LTF (liver function test) every 4-6 weeks for the first couple of years. Do you have the reference range for your LD? I've seen some reference ranges with the upper limit being 200 and other reference ranges being 600. Either way, your LD is a bit high. Did you have your ALP done? If your ALP is also really high it might mean that your liver is being strained with the Gleevec. The LD alone, doesn't specifically indicate that the liver is the culprit though because it could be high for a number of reasons. If it does turn out to be your liver, don't panic, there are options for you out there. Also, do you have your platelet count? I'm curious why your MPV went up so much since the last test. There are so many options out there for you if you have a problem tolerating Gleevec so try not to worry. Tracey > > Had a doc appt. yesterday and I am a little scared . My onc has stopped my 400mg Gleevec for the time being and I go back on March 9. > Nov 08 Feb 09 > LKCS4.4 LKCS 2.8 > Neutro 1.7 Neutro 1.0 > MPV 6.6 MPV 69 > AST 29 AST 273 > LD 712 LD 922 > > She felt my abdomen and told me not to freak out but that my # " s were all over the place.. > > Eva > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Eva, While I don't think there's any reason to panic, I do think that your experience shows why people shouldn't go so long between blood tests in the first year or two of treatment. When I was diagnosed (and when many of us were diagnosed), we had blood tests every single week. Once we got stabilized, then we moved to every 4-6 weeks (I'm talking about CBC's not PCR's). I kept this routine going for several years. I think it was only in my fourth or fifth year that I started to stretch my CBC's every 3 months. Most of the problems that people can experience on treatment will occur in the first two years which is why you want to have fairly close monitoring during that period. This is certainly a point I would raise with your doctor. Your platelet count is quite low and I would think that they would want to monitor that every week at this point, not wait for almost a month before checking again. It's true that the AST reflects liver function but the ALP is also a good indicator of how the liver is functioning. It's when you take all the tests together that you get a better idea of what's going on and where the problem is. Tracey > > > > Had a doc appt. yesterday and I am a little scared . My onc has > stopped my 400mg Gleevec for the time being and I go back on March 9. > > Nov > 08 > Feb 09 > > > LKCS4.4 > LKCS 2.8 > > Neutro > 1.7 > Neutro 1.0 > > MPV > 6.6 > MPV 69 > > AST > 29 > AST 273 > > LD > 712 > LD 922 > > > > She felt my abdomen and told me not to freak out but that my # " s > were all over the place.. > > > > Eva > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I agree... I have had CML for 4 years, but I have my CBC done every month and PCR once in 3 months. Livia From: Sharon & Denny <onthewtr@...> Subject: RE: [ ] (unknown) Date: Friday, February 20, 2009, 1:50 PM First of all I will say Eva you need to have blood work done once a month and PCR done every three months. Talk to your doctor about that!!!! Aloha Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Eva Sent: Friday, February 20, 2009 10:36 AM groups (DOT) com Subject: Re: [ ] (unknown) Hi Tracey , I am one yr diagnosed. She said my AST is my liver function. My sheet says the normal range is 5-45 U/L mine is Nov. 08 / 32 and Feb. 09 / 273. I go every three months for routine blood work and PCR My platelet count was Nov 08 - 217 Feb 09 - 69. It says the normal range is 150 - 450 x10 9/L what ever that means??? Thanks Eva From: Tracey Sent: Friday, February 20, 2009 11:56 AM groups (DOT) <mailto:% 40groups. com> com Subject: [ ] (unknown) Hi Eva, Have you not had any blood tests at all between November and February? That's a long time to go between blood tests for someone who is fairly newly diagnosed. I had CBC's done with LTF (liver function test) every 4-6 weeks for the first couple of years. Do you have the reference range for your LD? I've seen some reference ranges with the upper limit being 200 and other reference ranges being 600. Either way, your LD is a bit high. Did you have your ALP done? If your ALP is also really high it might mean that your liver is being strained with the Gleevec. The LD alone, doesn't specifically indicate that the liver is the culprit though because it could be high for a number of reasons. If it does turn out to be your liver, don't panic, there are options for you out there. Also, do you have your platelet count? I'm curious why your MPV went up so much since the last test. There are so many options out there for you if you have a problem tolerating Gleevec so try not to worry. Tracey > > Had a doc appt. yesterday and I am a little scared . My onc has stopped my 400mg Gleevec for the time being and I go back on March 9. > Nov 08 Feb 09 > LKCS4.4 LKCS 2.8 > Neutro 1.7 Neutro 1.0 > MPV 6.6 MPV 69 > AST 29 AST 273 > LD 712 LD 922 > > She felt my abdomen and told me not to freak out but that my # " s were all over the place.. > > Eva > > Quote Link to comment Share on other sites More sharing options...
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