Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Dear Bob , My thoughts and prayers are with you at this difficult time. Eva Brown. From: Bob Sent: Saturday, February 20, 2010 11:56 AM -The New Group ; CML-Asian Support Subject: [ ] I've Come Full Circle Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. Sorry to whine--guess I've got to open the box. Bob , Granger, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Dear Bob, over the almost six years that I've had CML you've always been the first to make us all laugh. Things are hard for you now, please don't feel that you've got to keep up the cheerful attitude, making us all laugh. This is a support group & if you want to whine, complain or feel sorry for yourself, then you can do so - we're here to support you love from Barbara > > Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. > > The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. > > Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. > > I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. > > Sorry to whine--guess I've got to open the box. > > Bob , Granger, Indiana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Hi Bob, It's me again. I do have a question but if you don't feel like writing about it, I will certainly understand. You say you'll be taking the nasties 3 days a week (INF) and twice a week for the other. Now, does that mean that all of your days are likely to be physically lousy or will you get a break on days you don't take the drugs? I hope it's the latter. Virginia [ ] I've Come Full Circle Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. Sorry to whine--guess I've got to open the box. Bob , Granger, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Hi Bob, I have a question too. Is it the same dose of Interferon that you had before? or, hopefully, is it less? And don't open the box, let Pat do it!! I know how bad that crap is, and I can only hope and pray it is a lesser dose. I'd like to send you a joke or two to make you laugh, but your jokes always top mine, so I'll just say you are definitely in my thoughts and my prayers. Love, Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club From: seloew12 <seloew12@...> Subject: Re: [ ] I've Come Full Circle Date: Saturday, February 20, 2010, 2:33 PM  Hi Bob, It's me again. I do have a question but if you don't feel like writing about it, I will certainly understand. You say you'll be taking the nasties 3 days a week (INF) and twice a week for the other. Now, does that mean that all of your days are likely to be physically lousy or will you get a break on days you don't take the drugs? I hope it's the latter. Virginia [ ] I've Come Full Circle Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. Sorry to whine--guess I've got to open the box. Bob , Granger, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 > > Hi Bob, > > It's me again. I do have a question but if you don't feel like writing about it, I will certainly understand. > > You say you'll be taking the nasties 3 days a week (INF) and twice a week for the other. Now, does that mean that all of your days are likely to be physically lousy or will you get a break on days you don't take the drugs? > > I hope it's the latter. > > > Virginia > [ ] I've Come Full Circle > > > > Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. > > The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. > > Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. > > I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. > > Sorry to whine--guess I've got to open the box. > > Bob , Granger, Indiana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Dear Virginia, From what I've read about the combo regiment, I'll feel like crap most of the time. Almost anyone who has taken Interferon will tell you that the side effects seem to build up over time until you feel like a bumbling fool with the flu. I'm trying to figure out a way that I can get a couple of straight days off so I can catch a little break and at least get the bills paid, etc. Bob , Granger, Indiana > > Hi Bob, > > It's me again. I do have a question but if you don't feel like writing about it, I will certainly understand. > > You say you'll be taking the nasties 3 days a week (INF) and twice a week for the other. Now, does that mean that all of your days are likely to be physically lousy or will you get a break on days you don't take the drugs? > > I hope it's the latter. > > > Virginia > [ ] I've Come Full Circle > > > > Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. > > The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. > > Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. > > I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. > > Sorry to whine--guess I've got to open the box. > > Bob , Granger, Indiana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Hi Bob: My prayers go out to you in this new treatment. 4 years of Interferon WOW!! I know what it does to you. I was put on Interferon in 1998, and within 4 months it was destroying my liver. I also had to do the ARA-C every other week along with the Interferon. Maybe it was the combination of both, but it seems like you were able to tolerate it even with those horrible flu like symptoms. I can remember I could not even walk. Felt like I had weights in my shoes etc. etc. You are truly a pioneer to all this. I wish you the best as you proceed with this. God Bless You A. > > Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. > > The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. > > Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. > > I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. > > Sorry to whine--guess I've got to open the box. > > Bob , Granger, Indiana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Hi Bob, I've confused you with my signature. It's Loewenkamp iIN Virginia. I've heard those terrible accounts o about interferon. I hope you can get those couple of straight days off to catch a little break each week. Love, [ ] I've Come Full Circle > > > > Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. > > The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. > > Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. > > I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. > > Sorry to whine--guess I've got to open the box. > > Bob , Granger, Indiana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Good luck, Bob. Hopefully you'll only have to endure those side effect temporarily--either they'll subside or a more tolerable treatment will be found. And you can whine all you want. Or curse or scream or kick. Ted From: Bob <bob-stewart@...> Subject: [ ] I've Come Full Circle " -The New Group " < >, " CML-Asian Support " <AsianCMLSupportGroup > Date: Saturday, February 20, 2010, 10:56 AM  Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead.  The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again.  Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer.  I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life.  Sorry to whine--guess I've got to open the box.  Bob , Granger, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Bob, Sorry you are having to deal with kidney cancer as well..I hope you do better on these meds than you did last time..I will keep you in my thoughts and prayers.. SharonS > > Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. > > The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. > > Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. > > I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. > > Sorry to whine--guess I've got to open the box. > > Bob , Granger, Indiana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Bob, I'm really sorry to hear about your lastest challenge! I'm very sorry life had to come full circle. Courage takes many forms in life--and to open the cooler and use the drugs on yourself when you know how you will feel afterwards takes some of the strongest courage there is. Good luck to you and Be Strong. Beth [ ] I've Come Full Circle  Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead.  The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again.  Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer.  I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life.  Sorry to whine--guess I've got to open the box.  Bob , Granger, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Dear Virginia, When I took Inteferon before I felt lousy all of the time, slept a lot, had high temp's, etc. The worse part for me was the mental problems. I couldn't remember anything--and often forgot people I'd known for 50 years. I'd just walk by them in the mall without recognizing them. Of course, I'd forgot why I'd gone to the mall in the first place. My hope is that the total amount of Interferon I'm going to be taking per week is less than I took 10 years ago. However, each individual dose is almost twice as high now. I'll report in occasionally about my trip (and try to get each of you an autograph of Jerry --he was good at trippin'). Bob , Granger, Indiana > > Hi Bob, > > It's me again. I do have a question but if you don't feel like writing about it, I will certainly understand. > > You say you'll be taking the nasties 3 days a week (INF) and twice a week for the other. Now, does that mean that all of your days are likely to be physically lousy or will you get a break on days you don't take the drugs? > > I hope it's the latter. > > > Virginia > [ ] I've Come Full Circle > > > > Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. > > The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. > > Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. > > I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. > > Sorry to whine--guess I've got to open the box. > > Bob , Granger, Indiana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Dear Bobby, Ya know we've been thru a lot of crap together. I just wish they'd put some paper in the two holer. I finally opened the box last night. I have to mix the stuff myself--never had to do that before. Apparently the manufacturers had to recall a lot of Interferon last fall because of impurities. I think mixing your own evil drug is like pulling your own switch in the electric chair. Thanks for being my buddy! ------>Bob > > Hi Bob, I have a question too. Is it the same dose of Interferon that you had before? or, hopefully, is it less? And don't open the box, let Pat do it!! I know how bad that crap is, and I can only hope and pray it is a lesser dose. I'd like to send you a joke or two to make you laugh, but your jokes always top mine, so I'll just say you are definitely in my thoughts and my prayers. Love, Bobby > > a ( Bobby ) Doyle, dob 12/17/29 > Brecksville, Ohio, USA > DX 5/1995 > Interferon 9 weeks/Hydroxyurea 5 years > 02/2000 to 06/2002 Gleevec trial, OHSU > 06/2002 Gleevec/Trisenox Trial, OHSU > 06/2003 Gleevec/Zarnestra Trial, OHSU > 04/2004 Sprycel Trial, MDACC, CCR in 10 months > 04/2008 XL228 Trial, U of Mich. > 01/2009 PCR 5.69 > 04/2009 Ariad Trial AP24534 > 09/2009 PCR 0.017 > 11/2009 PCR 0.034 > #840 Zavie's Zero Club > Bob , Granger, Indiana > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2010 Report Share Posted February 22, 2010 Bob, Sorry to hear that you are on Interferon again. I'm wondering if there's any chance you can go on the Pegylated version. I was on Peg Interferon for a year and the side effects were less than I heard from others on the regular daily dose--only feeling really terrible for a day or two each week. Any chance you can minimize the side effects with Peg Interferon?? I took mine on Friday, lost Friday and Saturday to the drug haze but then could function somewhat the rest of the week. Just an idea... Fran from Alaska Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2010 Report Share Posted February 22, 2010 Hi Bob, I had to mix the HHT when I was on it too. The smell nauseated me. It got worse as time went on. When Dr Cortes said that I could get in the ariad trial, I was so relieved. I'll never forget the smell. Yuck. I'll be praying for you to muscle up the strength to " get 'er done " . You've offered words of kindness, laughs, and strength to so many in this group. Now it's our turn to give it back. Power forward. God's Blessings, Jackie S. ________________________________ From: bob1234stewart <bob-stewart@...> Sent: Sun, February 21, 2010 10:53:57 AM Subject: Re: [ ] I've Come Full Circle Dear Bobby, Ya know we've been thru a lot of crap together. I just wish they'd put some paper in the two holer. I finally opened the box last night. I have to mix the stuff myself--never had to do that before. Apparently the manufacturers had to recall a lot of Interferon last fall because of impurities. I think mixing your own evil drug is like pulling your own switch in the electric chair. Thanks for being my buddy! ------>Bob > > Hi Bob, I have a question too. Is it the same dose of Interferon that you had before? or, hopefully, is it less? And don't open the box, let Pat do it!! I know how bad that crap is, and I can only hope and pray it is a lesser dose. I'd like to send you a joke or two to make you laugh, but your jokes always top mine, so I'll just say you are definitely in my thoughts and my prayers. Love, Bobby > > a ( Bobby ) Doyle, dob 12/17/29 > Brecksville, Ohio, USA > DX 5/1995 > Interferon 9 weeks/Hydroxyurea 5 years > 02/2000 to 06/2002 Gleevec trial, OHSU > 06/2002 Gleevec/Trisenox Trial, OHSU > 06/2003 Gleevec/Zarnestra Trial, OHSU > 04/2004 Sprycel Trial, MDACC, CCR in 10 months > 04/2008 XL228 Trial, U of Mich. > 01/2009 PCR 5.69 > 04/2009 Ariad Trial AP24534 > 09/2009 PCR 0.017 > 11/2009 PCR 0.034 > #840 Zavie's Zero Club > Bob , Granger, Indiana > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2010 Report Share Posted February 22, 2010 Hi Bob, You're a better man than me. I only lasted 3 months on Interferon. I ended up with CHF (Conjestive Heart Failure). It's one of the rare but nasty side effects of Interferon. Don't wory about your Zero Club number. Your's is # 54 and it's a lifetime membership. Wishing you great success with the Interferon, Zavie 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 Tel in FL: 561-429-5507 _____ From: [mailto: ] On Behalf Of Bob Sent: February-20-10 11:56 AM -The New Group; CML-Asian Support Subject: [ ] I've Come Full Circle Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. Sorry to whine--guess I've got to open the box. Bob , Granger, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2010 Report Share Posted February 23, 2010 Dear Bob. My thoughts and prayers are with you along with tears. I was always under the impression that if one got cml other cancers would not occur. I am so sorry to hear about your kidney cancer. My uncle had kidney cancer, and a part was removed. He then received treatment and was fine. I'm sorry to hear that you have to suffer from the interferon again. Is there another treatment that would be effective? Have you researched other treatments? Sandi > > Dear Bob , My thoughts and prayers are with you at this difficult time. > Eva Brown. > > > From: Bob > Sent: Saturday, February 20, 2010 11:56 AM > -The New Group ; CML-Asian Support > Subject: [ ] I've Come Full Circle > > > > Thirteen years ago I was diagnosed with CML. Back then the primary treatment for CML was a daily dose of Interferon. To me Interferon was one of the nastiest drugs I've ever been on. I went 4 years with constant flu like symptoms, and I almost went brain dead. > > The Gleevec came along, Interferon was taken off the table, and I was able to enjoy life again. > > Now I'm back on Interferon, 9 million units, 3 times per week. This time the Interferon is being taken with biweekly doses of Avastin, another drug that causes some nasty side effects. This time I'm taking Interferon for Kidney Cancer. > > I've come full circle over this 13 year period. The Inteferon came this morning in a ice chest type container. I just can't open it. I know that the Avastin-Interferon is my best chance at survival, but right now I can only think of quality of life. > > Sorry to whine--guess I've got to open the box. > > Bob , Granger, Indiana > > 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.