Jeanie doing better now that you posted. greenie In a message dated 4/29/2015 4:52:26 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes:
So don't think I can take it. Is anyone dealing with high potassium? I have been dealing with it for about six years. Alk phosphatase was a little high 107. Hope everyone is good tonight. Prayers & Blessings Jeanie 🐟🐟18,s Dx 1/2004 Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 On Apr 29, 2015, at 4:47 PM, "'Icandoallttc' via CMLHope" <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Hi all. My visit to Moffitt was good today. Blood counts almost normal. WBC went to 11 but that's only one point over. Wish they had come down. Platelets in the middle at 235. My potassium went up to 5.6. My PCD gets upset when it goes that high but just need to watch foods and drink more water. My onc changed my blood pressure med to lozartan but that is potassium Prayers & Blessings Jeanie 🐟🐟18,s Dx 1/2004 Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 On Apr 28, 2015, at 10:03 PM, Myvety2k via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Jeanie, keep us all posted O. K. we are all thinking of you. greenie In a message dated 4/28/2015 6:18:24 P.M. Eastern Daylight Time, _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) writes: Thank you Beth. I've been with this group for years now. We love each other through thick or thin. We have lost some wonderful warriors and we love them still. Thanks for loving us and we return your love in full. Keep praying and fighting. How are you? Prayers & Blessings Jeanie 🐟🐟18,s Dx 1/2004 Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 On Apr 28, 2015, at 5:49 PM, bkbarney via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: You keep us posted Jeannie, and stay close...we love you, I love you..even though I have never met you...A colleague of mine was talking to me today, I I shared a tiny pin hole of what my life is really like with her....and she said ..she could not imagine going through all of this without the support of people who are living it as well.....thanks for being in my circle. Beth -----Original Message----- From: 'Icandoallttc' via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Tue, Apr 28, 2015 4:46 pm Subject: Re: [CMLHope] Jeanie's update Hi Beth and thanks. I have tried everything. This new chemo affects your whole body. Very dry skin thinning hair and etc. Reminds me of Gleevec. Going to Moffitt tomorrow. Let the group know how my blood is doing. 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 Apr 28, 2015, at 5:14 PM, bkbarney via CMLHope < _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Dear Jeannie, I am so sorry you continue to struggle so with such significant side effects. Wish I had an easy fix...but of course, I don't...since the meds are what pushes the blood pressure up, I don't know if anything natural would help at all, but there are some foods that are natural diuretics, which in turn lower blood pressure some.....deep breathing and meditation/visualization...visualizing your heart rate slowing, and your BP slowly coming down to a healthy normal..some mind body connecting...I dont' know if this can help at all..but thought I would mention it...You can look on google for foods - fruits and vegetables that are natural diuretics... I wish you peace... Love to all..and so nice to see Marty back here connecting... .Beth -----Original Message----- From: 'Icandoallttc' via CMLHope < _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > To: cmlhope < _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Sat, Apr 25, 2015 5:24 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 < _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > 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, _swanson.sherri460@gmail.com_ (mailto:swanson.sherri...@gmail.com) 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 <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > 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 < _rbhuffman1@gmail.com_ (mailto:rbhuffm...@gmail.com) > 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_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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