Hi Jeanie,
I was wondering why they didn't try bosulif on you before the ponatinib? My doc told me last week she reserves ponatinib as the last resort and actually has no one on it now. She's a specialist at Northwestern if you remember. Hate hearing you are having such troubles, praying for all this to stop! Best wishes and 18's, Susan Z -----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Apr 25, 2015 6:24 pm Subject: [CMLHope] Jeanie's update Hi every one, I hope this Friday finds you guys all keeping the faith and doing well. I have been taking ponatinib now for 4 months. You are supposed to reach a good response in 6 months with a 12 month steady response. My blood is almost back to normal but I have had a lot of side effects. Rash Dry skin. Bad Rash High blood pressure Constipation Headaches There is a chance of blood clots and heart problems and more. The blood pressure meds don't work well with me and I have tried a lot. Any suggestions? Hang I'm there Marty. Maybe next year we will both feel like traveling the world. Prayers & Blessings Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s Dx 1/2004 Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 On Mar 10, 2015, at 6:31 AM, Myvety2k via CMLHope < [email protected]> wrote: Hi Group, As of last Tuesday I have lost 5 pounds and I don't know why. Been eating O. K. so I went to my Reg. Doctor yesterday and I'm going over to get some blood work at 7 a.m. Comprehensive metabolic panel, cbc (no diff), vitamin B12 level and TSH, Ultrasensitive. Also he want's me to have a colonoscopy to screen for colon cancer Friday. I really don't need 2 different kinds of cancer so I'm worried. Will let you all know what happens. greenie In a message dated 3/10/2015 4:00:08 A.M. Eastern Daylight Time, [email protected] writes: Richard, That is great news about the your haemoglobin. I also think it's great that your drs are talking to one another. That is so important. Last week, I had to get a transfusion as my counts were so low. I went to my onc and he did the usual blood draw and my WBC was 2.4. That was enough to send me over to the hospital for type and cross match and a transfusion. I too am eager to hear about Marty and pray for him everyday. Sherri On Mon, Mar 9, 2015 at 11:19 PM, 'Marcie Goodman' via CMLHope <[email protected]> wrote: Richard, excellent news and I'm happy to hear that your hemoglobin has stabilized. Glad that your doctors are in sync, too, because that will certainly make your life easier. Yay! Marcie Sent from my iPhone On Mar 10, 2015, at 12:15 AM, Richard H < [email protected]> wrote: I visited my VA ONC today and both ONCs are bck on the same page. The better news is it appears that my hemoglobin has stabilized at 10.5. we are going to move forward with the testing program until the end of May. Another piece of news that makes me very happy is that both ONC's works at Kansas University Cancer Center. The VA contracts it's Doctors and Fellows (Doctors in training). They can access all my records at both offices with the new Cerner Medical Systems that are being installed world wide. I am anxiously waiting for more news from Marty, and him keeping him my prayers. Richard H. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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