Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Terri, you aren't boasting. That you are in remission is fantastic news! We want and need to hear positive stories like yours. Hope is so important here. Continued good luck to you! I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Remission > Hello Everyone, > > Just a quick note to let you know how I am doing. Saw the Rheumy on Friday the 13th and she asked me how I was doing. To bring you up to date when I saw her 3 months prior we decided together to try decreasing the Arava to every other day. I told her I felt I was in remission. She felt my hands, and feet. Listened to my heart and lungs. She asked me how long I am stiff in the morning. I told her I have no stiffness. She then said, " yes, I agree with you that you are in remission " . My blood work is excellent. We are now going to decrease the Arava to 2 times per week until I see her again in about 4 months. We do have a plan if I should slip. I feel wonderful and didn't post earlier because I feel for the people who are so painful and still struggle with this disease. I don't want to boast, but hang in there to all. > > Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Terri, What is Arava? Is it in the same family as enbrel? Thanks, ette > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Terri,...That is great news, and I'm so glad for you! It gives us all hope for brighter futures, so keep up the good work, Tawny --- In , " Jim/Terri Hauff " <JimH@t...> wrote: > Hello Everyone, > > Just a quick note to let you know how I am doing. Saw the Rheumy on Friday the 13th and she asked me how I was doing. To bring you up to date when I saw her 3 months prior we decided together to try decreasing the Arava to every other day. I told her I felt I was in remission. She felt my hands, and feet. Listened to my heart and lungs. She asked me how long I am stiff in the morning. I told her I have no stiffness. She then said, " yes, I agree with you that you are in remission " . My blood work is excellent. We are now going to decrease the Arava to 2 times per week until I see her again in about 4 months. We do have a plan if I should slip. I feel wonderful and didn't post earlier because I feel for the people who are so painful and still struggle with this disease. I don't want to boast, but hang in there to all. > > Terri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Great news, Terri. Hope it lasts a looooooonnnnnnnggg time. (like forever!) --- In , " Jim/Terri Hauff " <JimH@t...> wrote: > Hello Everyone, > > Just a quick note to let you know how I am doing. Saw the Rheumy on Friday the 13th and she asked me how I was doing. To bring you up to date when I saw her 3 months prior we decided together to try decreasing the Arava to every other day. I told her I felt I was in remission. She felt my hands, and feet. Listened to my heart and lungs. She asked me how long I am stiff in the morning. I told her I have no stiffness. She then said, " yes, I agree with you that you are in remission " . My blood work is excellent. We are now going to decrease the Arava to 2 times per week until I see her again in about 4 months. We do have a plan if I should slip. I feel wonderful and didn't post earlier because I feel for the people who are so painful and still struggle with this disease. I don't want to boast, but hang in there to all. > > Terri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 I feel wonderful and > didn't post earlier because I feel for the people who are so painful > and still struggle with this disease. I don't want to boast Are you kidding?! Your news brings hope! Glad to hear it. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Terry, This is awesome. I am so happy for you. Please don't feel that you have to leave us now that you are feeling so much better. It gives me hope that this may happen in my life. I pray every morning when I wake up and am stiff and in pain that a day will come that I will have no pain. I am again so happy for you. God bless, Althea --- In , " Jim/Terri Hauff " <JimH@t...> wrote: > Hello Everyone, > > Just a quick note to let you know how I am doing. Saw the Rheumy on Friday the 13th and she asked me how I was doing. To bring you up to date when I saw her 3 months prior we decided together to try decreasing the Arava to every other day. I told her I felt I was in remission. She felt my hands, and feet. Listened to my heart and lungs. She asked me how long I am stiff in the morning. I told her I have no stiffness. She then said, " yes, I agree with you that you are in remission " . My blood work is excellent. We are now going to decrease the Arava to 2 times per week until I see her again in about 4 months. We do have a plan if I should slip. I feel wonderful and didn't post earlier because I feel for the people who are so painful and still struggle with this disease. I don't want to boast, but hang in there to all. > > Terri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Terri, I'm so happy for you. Thank you for telling us. There have been others that have gone into remission but they just leave and don't tell the group. We need to hear about the good and the bad, and we could definitely use some more good like yours! I hope your remission is permanent and you can enjoy life to it's fullest. a > Hello Everyone, > > Just a quick note to let you know how I am doing. Saw the Rheumy on Friday > the 13th and she asked me how I was doing. To bring you up to date when I saw > her 3 months prior we decided together to try decreasing the Arava to every > other day. I told her I felt I was in remission. She felt my hands, and > feet. Listened to my heart and lungs. She asked me how long I am stiff in > the morning. I told her I have no stiffness. She then said, " yes, I agree > with you that you are in remission " . My blood work is excellent. We are now > going to decrease the Arava to 2 times per week until I see her again in about > 4 months. We do have a plan if I should slip. I feel wonderful and didn't > post earlier because I feel for the people who are so painful and still > struggle with this disease. I don't want to boast, but hang in there to all. > > Terri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 So happy for you Terri.We really need to keep in touch now to follow your progress. Your telling us this, is giving many hope. Hugs June ----- Terry, This is awesome. I am so happy for you. Please don't feel that you have to leave us now that you are feeling so much better. It gives me hope that this may happen in my life. I pray every morning when I wake up and am stiff and in pain that a day will come that I will have no pain. I am again so happy for you. God bless, Althea > Hello Everyone, > > Just a quick note to let you know how I am doing. Saw the Rheumy on Friday the 13th and she asked me how I was doing. To bring you up to date when I saw her 3 months prior we decided together to try decreasing the Arava to every other day. I told her I felt I was in remission. She felt my hands, and feet. Listened to my heart and lungs. She asked me how long I am stiff in the morning. I told her I have no stiffness. She then said, " yes, I agree with you that you are in remission " . My blood work is excellent. We are now going to decrease the Arava to 2 times per week until I see her again in about 4 months. We do have a plan if I should slip. I feel wonderful and didn't post earlier because I feel for the people who are so painful and still struggle with this disease. I don't want to boast, but hang in there to all. > > Terri > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Thanks very much for writing, Judy. I so enjoy reading good news like yours first thing in the morning. I hope Humira allows you to continue feeling like a " new woman " ! I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org Re: [ ] Remission Mornin' Folks, Terri, this is wonderful news, I'm very happy for you and glad you shared. As a said hope your remission is permanent. With that said Terri you have inspired me to mention my personal success of late. I've posted a time or two but mostly lurk and learn much, for this I thank each and everyone. Without going into a long story my first notable signs of RA was a year ago last June. The first visit with my Rheumatologist wasn't till December of the same year and by the first of this year was given the Diagnosis of RA. Below is a list of meds I'm on. You can see by the dates the doctor was trying his best to find some relief for me without putting me on " pain meds " , something he will not perscribe. I took my second dose Humira this passed Wednesday. I must say relief came within just a few days after the first injection on the 4th of this month. Don't know if a remission is what's happening here but I feel like a new woman, well " new " for a 48 year old woman with RA anyway. Vioxx - 25mg 1 tab daily. Rx first dose - 12/05/03 Hydroxychlor (Plaquenil) - 200mg 1 tab morning and evening. Rx first dose - 12/05/03 Methotrexate - 2.5mg 3 tabs once a week for two weeks then 6 tabs once a week there after. Rx first dose - 1/5/04 - Along with this I take Folic Acid 1000mcg daily. RX dose change - 3/1/04 - 8 tabs once a week, taken on Mondays. Humira (Adalimumab) 40mg/0.8 mL Syringe – 1 injection under the skin every 2 weeks. Every other Wednesday. RX first dose - 8/4/04 Ambien - 10mg 1 tab at bedtime for sleep. Rx first dose - 12/23/03 Perhaps there is real hope for all of us battling RA. Just thought I would share my little success thus far. May everyone find their own successes to stop the progression of this awful disease. Thanks again everyone, now back to my lurk mode. Judy from Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Judy, I hope you continue to do well on your regime of meds. Since it's early in your disease, maybe you'll be one of the lucky ones to go into permanent remission. a > Mornin' Folks, > > Terri, this is wonderful news, I'm very happy for you and glad you shared. > As a said hope your remission is permanent. > > With that said Terri you have inspired me to mention my personal success of > late. > I've posted a time or two but mostly lurk and learn much, for this I thank > each and everyone. > > Without going into a long story my first notable signs of RA was a year ago > last June. > The first visit with my Rheumatologist wasn't till December of the same year > and by the first of this year was given the Diagnosis of RA. Below is a list > of meds I'm on. You can see by the dates the doctor was trying his best to > find some relief for me without putting me on " pain meds " , something he will > not perscribe. I took my second dose Humira this passed Wednesday. I must say > relief came within just a few days after the first injection on the 4th of > this month. Don't know if a remission is what's happening here but I feel like > a new woman, well " new " for a 48 year old woman with RA anyway. > > > Vioxx - 25mg 1 tab daily. > > Rx first dose - 12/05/03 > > > > Hydroxychlor (Plaquenil) - 200mg 1 tab morning and evening. > > Rx first dose - 12/05/03 > > > > Methotrexate - 2.5mg 3 tabs once a week for two weeks then 6 tabs once a week > there after. > > Rx first dose - 1/5/04 - Along with this I take Folic Acid 1000mcg daily. > > RX dose change - 3/1/04 - 8 tabs once a week, taken on Mondays. > > > > Humira (Adalimumab) 40mg/0.8 mL Syringe – 1 injection under the skin every 2 > weeks. > > Every other Wednesday. > > RX first dose - 8/4/04 > > > > Ambien - 10mg 1 tab at bedtime for sleep. > > Rx first dose - 12/23/03 > > Perhaps there is real hope for all of us battling RA. Just thought I would > share my little success thus far. May everyone find their own successes to > stop the progression of this awful disease. Thanks again everyone, now back to > my lurk mode. > > Judy from Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 , I belive you are speaking of me. I have been in remission since May 2004. No meds at all. I came off all my meds in April 2004 as I was having some minor surgery in preparation for lapband weight loss surgery which occurred in May 2004. Before going off all meds I was on: Enbrel, MTX injection 15mg, folic acid 5mg daily, leukovorin, prozac, bextra 20mg, ultram, claritin, multi-vit, calcium, magnesium, zinc, B-150, evening primrose oil, vit-E, and Fish oil complex. I have been in in the past: Methotrexate pills, flexeril, sonota, Arava and prednisone. I was diagnosised in 2001-2002..not sure on those dates...but I started on Arava, pred and Bextra. After about 6-7 months the arava stopped working. So I got switched to Methotrexate pills..which made me deathly illl and I got drug induced pneumonitis. that was stopped and Enbrel added. then my doc added MTX injectable back in..which has always made me very sick...I finally stopped the MTX on my own...got tired of being sick. Since having weightloss surgery i have no need for meds. I feel good. little to no pain. I am on a high protein, low fat, low carb diet, lots of water, daily exercise. I have lost 50 lbs so far. I noticed within a few weeks after surgery that I had no pain at all. I also do not do sugar, sodas, junk food and eat very little bread. I also have left my high stress job...I am still out on long term disability. Good luck Toni In a message dated 3/29/2005 11:56:46 AM Central Standard Time, writes: Date: Tue, 29 Mar 2005 09:14:06 -0800 (PST) From: Matejcek <corgi1980@...> Subject: Remission Hi, Some one wrote recently about being in remission and free of medication since May of 2002. Sorry I cannot address this person personally, I thought I saved the email but seems I did not. Would whoever you are care to speak about this more? How long were you diagnosed with RA before remission? What drugs were you on before remission - if any? Do you do anything now proactively to stay in remission and avoid flares - diet, exercise, lifestyle changes? I'd like to learn more if you are willing to share. As for me, I am 52 and was diagnosed in January of this year with RA. Currently on 20mg MTX and 5 mg Pred and working my way down to zero Pred. Feeling very good and want it to last. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 I called my oncologist a couple days ago to check on my blood work I had done and I asked if I was in remission yet and she (PA) told me that there is no remission for CML per say! I think I remember reading that we can go into remission so please let me know what all has to be done to know if I am in remission or not. My wbc has been normal for a few months now. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2009 Report Share Posted December 20, 2009 Hi Well I consider myself I remission because my PCR test is negative. Have you had a PCR quantitative test? I guess we can not say remission because we have to continue taking our medication in order to stay in remission!!! But I consider myself in remission and I have been for years. Ask your Dr. if you can have a PCR Quantitative test. Let me know what they say. Sharon _____ From: [mailto: ] On Behalf Of wendyphillips54 Sent: Sunday, December 20, 2009 1:18 PM Subject: [ ] Remission I called my oncologist a couple days ago to check on my blood work I had done and I asked if I was in remission yet and she (PA) told me that there is no remission for CML per say! I think I remember reading that we can go into remission so please let me know what all has to be done to know if I am in remission or not. My wbc has been normal for a few months now. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 Hi , It depends how one defines remission with CML. One can define it as being free of CML and not taking any medication. Very few patients ever reach this level. Some will say that you are in remission if you achieve PCRU. But this means that you must continue taking medication for the CML. If you stop the medication then it becomes active again. Others will say that you are in remission as long as your CML is stable and it doesn't matter if you are still at 100% CML positive, or at CCR, MMR, or CMR. And as with PCRU you need to continue taking the drug. For myself I considered I was in remission when I reached CCR. Any deeper response is just a bonus. Try and get a copy of all your results. Once you have them you can see how well you are doing. Just look at my signature. My PCR result keeps getting better and better as long as I am taking Gleevec. Decide for yourself what remission means for you. I have seen doctors increase a patient's dose just to get them into PCRU. Personally I think that is wrong especially when the top CML specialists believe that as long as the patient is maintaining a consistent steady response over time. My definition of remission is achieving CCR and maintaining it for at least 2 years. I hope this helps. Zavie PS If you reach CCR you get a number in the Zero Club. Zavie (age 71) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of wendyphillips54 Sent: December 20, 2009 4:18 PM Subject: [ ] Remission I called my oncologist a couple days ago to check on my blood work I had done and I asked if I was in remission yet and she (PA) told me that there is no remission for CML per say! I think I remember reading that we can go into remission so please let me know what all has to be done to know if I am in remission or not. My wbc has been normal for a few months now. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 So glad to see your increased log reduction Zavie. I saw 's post, but I knew you would see it. You have a way of simply explaining things so everyone can understand the whole process. Hope you can give her some more advice after she gives you some numbers. > > Hi , > > It depends how one defines remission with CML. > > One can define it as being free of CML and not taking any medication. Very > few patients ever reach this level. > > Some will say that you are in remission if you achieve PCRU. But this means > that you must continue taking medication for the CML. If you stop the > medication then it becomes active again. > > Others will say that you are in remission as long as your CML is stable and > it doesn't matter if you are still at 100% CML positive, or at CCR, MMR, or > CMR. And as with PCRU you need to continue taking the drug. > > For myself I considered I was in remission when I reached CCR. Any deeper > response is just a bonus. > > Try and get a copy of all your results. Once you have them you can see how > well you are doing. > > Just look at my signature. My PCR result keeps getting better and better as > long as I am taking Gleevec. > > Decide for yourself what remission means for you. I have seen doctors > increase a patient's dose just to get them into PCRU. Personally I think > that is wrong especially when the top CML specialists believe that as long > as the patient is maintaining a consistent steady response over time. My > definition of remission is achieving CCR and maintaining it for at least 2 > years. > > I hope this helps. > > Zavie > > PS If you reach CCR you get a number in the Zero Club. > > > > > > Zavie (age 71) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > 2.9 log reduction Feb/07 > 3.6 log reduction Apr/08 > 3.6 log reduction Sep/08 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > 3.8 log reduction Aug/09 > 4.0 log reduction Dec/09 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > > _____ > > From: [mailto: ] On Behalf Of > wendyphillips54 > Sent: December 20, 2009 4:18 PM > > Subject: [ ] Remission > > > I called my oncologist a couple days ago to check on my blood work I had > done and I asked if I was in remission yet and she (PA) told me that there > is no remission for CML per say! I think I remember reading that we can go > into remission so please let me know what all has to be done to know if I am > in remission or not. My wbc has been normal for a few months now. > Thanks, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 Totally understand!!! People do not even know what CML is and do not even know that I have it. It does take a 5 minute lecture to educate them. Then when they hear that it is a cancer they DO ask are you on chemo, are you in remission???? Very Annoying. If you make a T Shirt----I want one. Sharon T _____ From: [mailto: ] On Behalf Of phil130566 Sent: Monday, December 21, 2009 6:27 AM Subject: [ ] Re: Remission One of the many annoyances of CML is not being able to give simple answers to the 2 most common questions you get asked: " Are you in remission " and " Are you taking chemotherapy " . Most people asking aren't really ready for the 5 minute lecture needed to answer those! Maybe I should get some leaflets printed? Or a T-Shirt? Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2009 Report Share Posted December 21, 2009 > > One of the many annoyances of CML is not being able to give simple answers to the 2 most common questions you get asked: " Are you in remission " and " Are you taking chemotherapy " . Most people asking aren't really ready for the 5 minute lecture needed to answer those! > Maybe I should get some leaflets printed? Or a T-Shirt? > Phil __________________________ Hi Phil, Here is a short, simple response that I think adequately answers both questions: I take a small dose of chemotherapy daily in pill form that keeps my cancer in check. C. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.