[CMLHope] Re: Jeanie
Thanks for sharing your trip Jeanie. It shows that you are loving every minute of it. I loved my visits there. Richrd H. On Friday, June 8, 2018 at 5:30:11 AM UTC-5, Jeanie wrote: > > > > > > My Motto: > Faith and Pills > With Love > Jeanie > 18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/ 2015 > New Doctor--Dr Martine Extermann > Moffitt Cancer center > > 0 CBL. ABL > -- -- [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
[CMLHope] Re: Jeanie/CML
In a message dated 3/28/2009 11:24:54 P.M. Eastern Daylight Time, rszim0...@aol.com writes: Hi and yes, nilotinib is Tasigna. Jeanie3 Hi Jeanie, I do go see Dr. Pinilla and hope there will be no problem in getting back in to him. He's been ordering my blood tests ever since going off meds. I bet you were upset over what happened in going to see him. I really like him. Since I was unique in what happened, he wants to see me. He highly recommended sprycel but after trying one dose of nilotinib, (is that tasigna now?) and having an eye bleed, I was afraid to go on sprycel. So now if my counts are up again I will do what he suggests. The sign of the brain bleed was numbness in one arm and side of my face. No pain, just that. I am so thankful I had no serious effects from it. After reading again all the side effects which i experienced with gleevec, I am so thankful for every day with no meds at all. I am on a new natural thing from Premier Research Labs that is supposed to help all cancer but of course can make no claims. I will let you know how it goes, just started. **A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1220439616x1201372437/aol?redir=http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26hmpgID %3D62%26bcd%3DfebemailfooterNO62) --~--~-~--~~~---~--~~ [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Jeanie/CML
Hi there, I'm glad you are happy with Dr Pinila. I decided to keep my onc; he has been with me since the beginning and he knows me really well and I know he will be there for me when I need him. What natural substance are you taking? I believe in good nutrition to keep our bodies running the best they can. I pray you get better soon. Jeanie3 In a message dated 3/28/2009 11:24:54 P.M. Eastern Daylight Time, rszim0...@aol.com writes: Hi Jeanie, I do go see Dr. Pinilla and hope there will be no problem in getting back in to him. He's been ordering my blood tests ever since going off meds. I bet you were upset over what happened in going to see him. I really like him. Since I was unique in what happened, he wants to see me. He highly recommended sprycel but after trying one dose of nilotinib, (is that tasigna now?) and having an eye bleed, I was afraid to go on sprycel. So now if my counts are up again I will do what he suggests. The sign of the brain bleed was numbness in one arm and side of my face. No pain, just that. I am so thankful I had no serious effects from it. After reading again all the side effects which i experienced with gleevec, I am so thankful for every day with no meds at all. I am on a new natural thing from Premier Research Labs that is supposed to help all cancer but of course can make no claims. I will let you know how it goes, just started. **A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1220439616x1201372437/aol?redir=http:%2F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26hmpgID %3D62%26bcd%3DfebemailfooterNO62) --~--~-~--~~~---~--~~ [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 cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Jeanie/transfusion
Hi Nancy, I'm Millie from Pennsylvania and have been on Tasigna for about 3 months now. They've played with dosage some and I have had some side effects, but am now back on 800 mg. and seem to be doing okay on that amount. Jeanie and I have been comparing notes for a while, and it sure does help knowing you're not alone in your fight. I've been fighting this for about 10 years now and am not in remission, but hoping that Tasigna will do it for me. Just wanted to touch base as there aren't to many of us on this new drug, and it's interesting to know how it's affecting us. Best wishes with your fight and, hopefully, this Tasigna will be the answer for all of us. Millie in PA. --~--~-~--~~~---~--~~ [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: Jeanie/transfusion
Hi Nancy, Good to meet you. Yes, we're related; CML TWINS HEHE. How did the Gleevec quit working for you and how are you doing on Tasigna? My platelets started going up and then my potassium went up, so I was having a time. I then got blast in my blood and went into aml. I hope I am on the right track now. Blessings, Jeanie3 In a message dated 10/3/2008 5:56:48 A.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie, I'm glad to hear you got through the transfusion ok. I'm sure you will feel better because of it. Good luck with all your other tests including the ct scan. I read an earlier post of yours and realized that we were diagnosed at the same time, January 2004. I was on Gleevec from that time until last June 2008. Now, we're both on Tasigna! It's almost like we're related! lol! Best wishes, Nancy in NY **New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News more. Try it out! (http://local.mapquest.com/?ncid=emlcntnew0001) --~--~-~--~~~---~--~~ [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 Jeanie and Barium
Hi Jeanie - just remember to drink lots of water after your test to get rid of the barium. Unless they have added something to it to make it soft when you expel it, which is highly unlikely, it hardens rather quickly and it's hard to get rid of (physically). If you are susceptible to constipation you've really got to drink lots of water to get the stuff moving out of your system. Hope all goes well - I'm praying for you. Hugs, Judy P. in Calgary __ Yahoo! Canada Toolbar: Search from anywhere on the web, and bookmark your favourite sites. Download it now at http://ca.toolbar.yahoo.com. --~--~-~--~~~---~--~~ [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: Jeanie
My thoughts and prayers are with you Jeanie, as you embark on the tour of another drug. Thank goodness for all the advances in medications for CML - this gives us all hope when things go awry with the present drugs we are on. May Tasigna make you feel so good that you'll feel like a new you. Hugs, Judy P. in Calgary __ Looking for the perfect gift? Give the gift of Flickr! http://www.flickr.com/gift/ --~--~-~--~~~---~--~~ [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: Jeanie
Thanks so much Judy, My prayers are with you also and to all on this list. Keep fighting Warriors. Jeanie3 In a message dated 9/25/2008 7:13:48 A.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: My thoughts and prayers are with you Jeanie, as you embark on the tour of another drug. Thank goodness for all the advances in medications for CML - this gives us all hope when things go awry with the present drugs we are on. May Tasigna make you feel so good that you'll feel like a new you. Hugs, Judy P. in Calgary **Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpop.com/?NCID=emlcntuswall0001) --~--~-~--~~~---~--~~ [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: Jeanie
In a message dated 9/17/2008 8:45:58 A.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: Jeanie: I am sorry to hear about the move into accelerated phase. Please know that I am thinking of you and praying that your doctor will put you on something else that works for you. So good luck to you--I'm sure there is just the treatment out there that will work for you. Margot Thanks so much Margot, I am looking forward to the new treatment. I know it's going to be a challenge but everyday with CML is a challange. Let's all keep on praying. Blessings, Jeanie3 **Pt...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty000514) --~--~-~--~~~---~--~~ [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: Jeanie
Jerome is doing great. PCRU is only attained by fewer than 10% of CMLers. A 3 log reduction is used as the CML therapy goal, which is more realistic. And studies show nearly 100% survival rate if 3 log reduction is achieved. So Jerome has exceeded the goal. His anemia is something that many of us live with. Anisocytosis means the red blood cells have greater variation in size than normal. This is also shown by the CBC RDW count going higher. Poikilocytosis (oddly shaped red blood cells - RBCs) and occasional elliptocytes (oval shaped RBCs) and rare odd shaped poikilocytes are also seen in CML. Rouleaux formation is when RBCs clump together. These RBC issues are a matter of the quality of the RBCs, and go along with CML anemia. This is why just taking more iron or folic acid does not eliminate the anemia. These inefficient types of RBCs do not function as well, hence the anemia. Some data indicates these RBC quality issues tend to get better over time for many people. Hypocellular marrow (low number of cells in the marrow) goes with the anemia. If he is taking iron supplements, the increase in iron storage might show he is taking too much iron -- ask the doc about that. CML anemia does not automatically mean we need more iron. Too much iron can be counterproductive. The body stores the excess iron, which is not necessarily a good thing. Fibrosis (scarring) of the marrow is NOT Myelofibrosis (also called Idiopathic Myelofibrosis). No wonder it scared you. Mild fibrosis of the marrow can sometimes occur in CML, and is often reversible. Myelofibrosis is a different disease caused by a separate DNA mutation. --~--~-~--~~~---~--~~ 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?hl=en -~--~~~~--~~--~--~---
