[CMLHope] Re: New Drug
Barb-Thanks for your reply.Joe goes to an MD tomorrow we will see what he has to say. His Onc. took him off sprycel for a week he is back on it now. Why did yoy switch??? Mary On Jul 17, 8:18 am, Barb in AZ [EMAIL PROTECTED] wrote: Mary I was put on tasigna Dec. of 2007. I started at 800 mg and my oncologist reduced it to 400 mg. I had no problems although they did monitor me closely for heart conditionns (I am really healthy, it was just tasigna protocol).The 800 produced pretty severe side effects with rash and joint pain. . The 400 has none. You can find the information on the drug on the Novartis site. Best thing I ever did was switch. Best of luck for your husband. Barb Stanley 57 DX 5-5-2002 age 51 Hydroxurea 5-5-02-6-3--02 Gleevec 400 mg 6-11-02 MMR 8-1-02 CCR 12-10-02 PCRU 3-17-03 Gleevec break: Feb. 15 - May 1, 2006 ( severe side effects) Gleevec 300 mg. May 1, 2006 - Dec. 15- 2007 800 mg tasigna Dec. 27 -Jan 12 ( stopped because of side effects) 400 mg tasigna Jan 20 - present (NO SIDE EFFECTS) Continuing strong PCRU #401 on Zavie's list --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: New Drug
Norm Thanks for your input.I can't belive I slept thru this drug. Joe is a ww2 vet. was doing well on gleevec he was doing so good he decided to go off. He was fine for 3 months.Then gleevec didn't work.So I was able to get him an appt. with Dr Talpaz in Texas.The long and short of is he on 5mg of Sprycel now with the heart problems don't really know what will happen. I'm so glad you are alive and doing ok with this drug. Thanks again God Bless Mary On Jul 17, 8:39 am, Norm [EMAIL PROTECTED] wrote: I am a phase 1 protocol participant for AMN107 or as it is now called Tasigna. I started the protocol in the fall of 2004 after developing Gleevec resistance. I am blast and I am alive. This fall will be 4 years on Tasigna. Once everything stabalized I have had very few side effects and all have been mild. The worst was the rash but it wasnt that bad. I was in really bad shape by the time I started the new drug and feel fortunate to still be alive. I cant say much about pain as I was in severe pain before taking the drug, spleen about the size of a football hurts, hell my whole body hurt. Anyway, the drug saved my life and is working wonderfully for me. I get an EKG once a month to monitor my heart and all have been good, no problems. I do know that a couple of people did pass from heart failure during the trial but believe that they were very high risk for heart problems but since they were phase 1 study it had to be noted. I am not 100% positive on that but think it is correct. Good luck and my prayers are with you. Norm On Jul 16, 3:33 pm, sassy [EMAIL PROTECTED] wrote: Hi All I haven't been paying attention to the list for a while. I guess when things are going ok you forget to take part. My husband Joe is the one with CML dx 1996 has gone from hydrea, gleevec to sprycel. Now he may have a problem. Oxygen level was 83 so he is now on oxygen 3.5 all day. I e-mail Dr Druker since we were in touch when Joe went off gleevec.Joe wasn't able to go back on Gleevec it didn't work any more, Dr Druker suggest a trial for Bristol Meyer Squid in Dallas Tx we were lucky they took Joe. But he wasn't able to take 140mg of Sprycel soo he had to leave the trial. Today he is on 5mg of Sprycel and has congestive heart failure. So Dr Druker suggested nilotinib ( Tasigna) any one on it?? Know anything about it I would like any info. Mary Joe 120 on Zavie's first list- Hide quoted text - - Show quoted text - --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: New Drug
Thank you I did a little looking about this drug. I must say I was surprised that DR. Druker suggested it. Sometimes we are better off not knowing all the side effects. Good luck God Bless Mary On Jul 16, 4:50 pm, C.M. Houtz [EMAIL PROTECTED] wrote: Hi Mary I was put on Tasigna about 1 month ago, and now my Oncologist has pulled me off for the next two weeks. I suffered from headaches and a little nausea at first, but that went away. I'm having problems with muscle pain now and it's bad, so this is why he pulled me off. He wants to see if it's the medication or something else. I have had congestive heart failure in the past and my Cardiologist is watching this medication two. I had 3 E.K.G.'s at first, but they came back okay. I think I'll probably have another when I go back on (if I do) I know that there aren't many people on it. Barb in Arizona has some information on it, but I find that I am better off not reading all of the side effects at first. I read everything that came with the drug, plus what the doctor gave me, so know I'm lucky to have had as few side effects as I've had. It scared me to start it, with my heart problems, but so far, I didn't have any problems in that area. I was put on 800 mg. a day to start. Have a feeling he'll lower the dosage when I see him in two weeks. I hope that I've helped you and hope all goes well for your husband. Keep in touch and let me know what you both decide. Millie - Original Message - From: sassy [EMAIL PROTECTED] To: CMLHope CMLHope@googlegroups.com Sent: Wednesday, July 16, 2008 4:33 PM Subject: [CMLHope] New Drug Hi All I haven't been paying attention to the list for a while. I guess when things are going ok you forget to take part. My husband Joe is the one with CML dx 1996 has gone from hydrea, gleevec to sprycel. Now he may have a problem. Oxygen level was 83 so he is now on oxygen 3.5 all day. I e-mail Dr Druker since we were in touch when Joe went off gleevec.Joe wasn't able to go back on Gleevec it didn't work any more, Dr Druker suggest a trial for Bristol Meyer Squid in Dallas Tx we were lucky they took Joe. But he wasn't able to take 140mg of Sprycel soo he had to leave the trial. Today he is on 5mg of Sprycel and has congestive heart failure. So Dr Druker suggested nilotinib ( Tasigna) any one on it?? Know anything about it I would like any info. Mary Joe 120 on Zavie's first list- Hide quoted text - - Show quoted text - --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] congested heart failure
Hi has anyone had heart failure with Sprycel??? Mary husband Joe with CML since 1996 now on Sprycel since Gleevec no longer worked. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Fish test NEG---white count??????
Hi Iam confused Joe's fish test neg 2 weeks ago. Yesterday his wbc was 10.7 which is in the normal range but I remember when at Houston Dr. Talzap wanted wbc in the 3's Has anyone had a wbc that high and still be in remission??? Mary Joe dx 1996 hydrea gleevec Sprycel 50mg once a day 120+ on Zavies list --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Anemia
My Thanks to all that contributed. Joe thank goodness doesn't have to pay for any of his meds.He a retired veteran of WW2 I was kind of checking on his Onc. Because his counts were lower the week before. I will just keep watching and asking Mary other 1/2 of Joe dx 1996 120 on Zavie's old lost list --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Anemia
Thanks Trey Joe's counts rbc 3.27 hct 32.3 hgb 10.9 I didn't think he needed it but he is getting anyway. Mary --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Anemia
Hi Need to know what your counts would be when put on Procrit??? Mary Joe's other 1/2 dx1996 hydrea until gleevec until restance Sprycel 50mg since Nov --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: My 1st post
Dave Don't do it--stay on your gleevec. My husband was in remission for 2 yrs and decided to go off Gleevec. He was off 3 months when his wbc started going up. was put back on Gleevec 400 a day nothing 800 nothing. Now he was resistaned to it. S.Looked for a trial and found BMS went to Houston Tx. to make a long story short it didn't work was put on Hydrea. Just be careful don;t try to fix it. Mary S. joe dx 1996 120 on Zavie's list --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Transfusion Sprycel
Anjana; Yes I know about warfin and sprycel. I said my piece to both Joe and his Onc. She talked with BMS and it was a go. So he is only taking 70mg a day. only been on it for 3 weeks. She also know about his trip to Houston and 140Mg a day 7 days a week. We see her tomorrow and see what is next. Thanks Mary --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Blood
Joe stared Sprycel 2 weeks ago and his hgb is at 10.1 his Onc. has put him on iron pills. Doesn't want toget below 8. then he will need transfusion.Anyone been there. dx 1996 hydrea gleevec hydrea sprycel 120 on Zave's list Mary other 1/2 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Yes Or No
Anjana; Joe was dx in 1996,He was on Hydrea until it didn't work any more, then Gleevec for three yrs.until it didn't work. The BMS drug we know worked but he couldn't take the dose they had him on 90mg twice a day and no days off. Since returning home and his hgb got back to normal and put on 3 hydrea he has been fine. He is 78 yrs old. How about quality of life? God is good Mary --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Yes Or No
Anjana; Thanks my pardon the expression (gut) told me so. He was in the trial for BMS and had to leave I think he needs to leave well enough alone. Takes 3 hydrea a day and his wbc is normal. This for someone that became resistane to Gleevec.--Mary --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Yes Or No
Hi Need to ask a ?? Joe (the one with CML) is on warfin for blood clot should he go on new drug from BMS. Mary Joe dx 1996 Hydrea until Gleevec resitance to Gleevec BMS trial unable to stay 120 on Zavies List --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: University of Michigan
Hi I have a question??? Did Mary Carroll go with Dr. Talpaz. She was the nurse in charge of BMS trial with Talpaz. Mary caregiver for Joe dx1996 Hydrea, gleevec until resistance to it. After being on the BMS trial for 2 weeks he is now on 3 hydrea and his white count is 4.5 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: deep vein thrombosis
Anjana; His plt are fine 169. He will be released tomorrow. Let's see what he does next. ( ha) Mary --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Information needed
Hi; Yes I know why he failed. He was on a double dose of the drug after two weeks he woke up and his neck was swollen up he has a carotid body tumor on the right side. so to the E.R. we went. To make a long story short he was sent to St. Lukes and was told he needed 2 units of blood before they could check out his heart before they could do surgery on the tumor. He had been given some pain meds and was rather out of it. He came too long enough to hear surgery, and said I'm going to Oklahoma and we did. When his blood Hmg got back to normal. He was put on 3 hydrea which is what he is on to this day. We were in Houston a year ago in March.It is a miracle there was something in the BMS drug that is still working. His Onc. is amazed. God is good. Thanks for your reply Mary --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Information needed
Hi; Joe has had CML since 1996, Been on hyrea,gleevec;failed BMS trial now is on 3 hydrea with a white count of 4.8 my question is this. His MCV is 107 and MCH is 36.1 What does that mean??? Please and thank you Mary Joe dx 1996 `120 on Zavie list --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Implants
Hi My husband has CML and had to have some dental work done. His dentist just put him on some anti botic before the work also if he has teeth cleaned he put him on antibotic She will be fine. God Bless Mary --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
