Thank you Richard for your reply, I know one thing I stopped using salt and my wife never cooks with it but when you go out for dinned I have to tell them no salt. greenie In a message dated 5/6/2016 12:01:34 A.M. Eastern Daylight Time, [email protected] writes:
Hi Greenie. I am lucky to only have a small amount of leg swelling. Between my heart and Gleevec it stays at level one. now. I did loss 30 lbs of water weight (without pills) when I took my long break from Gleevec. Heart and ONC recommended that I KEEP the FEET UP to help pump blood through your feet and legs. The higher the better. I use a recliner chair and attempt to nap with my feet above my head a couple of times a day. That does help reduce the swelling. My wife has had to use compression stockings because of her new heart problems, but she gets dizzy when she gets her feet even or above her head, and that does force the water to flow through the system. She also has to take the water pills because hers is also collecting around the heart. Just suggestions from a couple of Dr.s. that might help the problem so you could use less water pills. The great news is you do have everything under control.. I'll be looking for your report next month. 18's Richard H. On Thursday, May 5, 2016 at 8:47:36 AM UTC-5, greenie wrote: Hi Group, my Creatinine levels have always been on the high side going back to 1997 before I found out that I have CML. They were 1.2 then and over the years now 2 months ago they are at a high of 1.67. but it goes up and down. Sometimes 1.4 or 1.5. In December of 1998 is when I found that I had CML 2 weeks before Xmas. But I started Gleevec the first week in Jan. of 2000. The last year I have been retaining water on my lower legs and feet and some days their is not a problem. Take a water pill and helps, but here in Florida that could be some of it weather wise don't know. Will see my Cancer Doctor at Northwestern in Chicago the 1st of June and will talk to here. Take care everyone, Greenie In a message dated 5/5/2016 8:37:03 A.M. Eastern Daylight Time, [email protected]_ (javascript:) writes: Beth, Jennie and all of you that are "residing" in this CMl web site are just EXCELLENT PEOPLE, it's just you don't realize it... Yet. 18's, Marty On Wed, May 4, 2016 at 10:43 AM, 'Icandoallttc' via CMLHope <[email protected]_ (javascript:) > wrote: Hi Beth and thanks. My Creatine level was 0.9. The normal is 0.5-1.0. My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On May 3, 2016, at 2:44 PM, bkbarney via CMLHope <[email protected]_ (javascript:) > wrote: CPK doubled in the last two months to 700. Monoclonal protein they had been tracking for the last two years is up...BCR abl will hopefully be a good result... Then we plan from there... Marty, I just went to the national Bone Marrow Transplant Survivors conference this weekend...I went as the caregiver and helper to my best friend who is now 2.5 years out and struggling with graft vs host. I went to 9 seminars and met lots of people ..wow...so humbling, inspiring, overwhelming...and I thought of you.all those years ago....before all these advances have been made.....hope you are feeling better...I know you will stay positive, and strong..I am thinking of you.. and Jeanie, the session I went to on faith, spirituality and illness ....was right up your alley...you and many other's here.. also did a nice piece on yoga and meditation, complementary medicines, nutrition....pain management, sleep issues...etc..etc..really well done weekend. and the importance of not getting lost in our heads, in fear, and ruminating...but instead, staying anchored, and reaching out so we are not in isolation.... Thinking of all of you.. Love, Beth 18's.. -----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]_ (javascript:) > To: cmlhope <[email protected]_ (javascript:) > Sent: Tue, May 3, 2016 12:12 pm Subject: Re: [CMLHope] Prayers are offered. What are the changes in your blood work if u don't mind sharing Beth?I have several things out of range but just slightly. My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On May 2, 2016, at 6:14 PM, 'Marcie Goodman' via CMLHope <[email protected]_ (javascript:) > wrote: Beth, yes, a long time since you've posted. Please let us know your results. Sending prayers and hugs. Marcie Sent from my iPhone On May 2, 2016, at 2:05 PM, bkbarney via CMLHope <[email protected]_ (javascript:) > wrote: Thank you Richard for your kind words and prayers. They are always so appreciated. You are such a stable presence here. I so appreciate your thoughts and help. I hope everyone is navigating the best they can. Know that I think of all of you often...haven't written much because of my own journey...I am sorry if I missed out on communicating with those who are struggling recently. All of you are in my heart. I do BCR abl next week..so please keep your fingers crossed. I have more anxiety about this one for some reason... My basic blood work shows some changes that are in the wrong direction...hopefully things are stable in the CML realm. Will keep you posted.. Much love and 18's, Beth -----Original Message----- From: Richard H <[email protected]_ (javascript:) > To: CMLHope <[email protected]_ (javascript:) > Sent: Sun, May 1, 2016 11:11 pm Subject: Re: [CMLHope] Prayers are offered. Thank you. Richard On Saturday, April 30, 2016 at 11:29:32 AM UTC-5, wa2yyx wrote: Just one thing to say Richard H. Your like the rock of Gibraltar. 18's to you! Marty On Sat, Apr 30, 2016 at 12:07 AM, Richard H <[email protected]> wrote: I am sorry to hear about all the problems everyone is reporting. I am lifting prayers for healing to those with problems and for the caregivers prayers of understanding and strength to help them be the support they want and need to be. I am just coasting with all my problems and trying to deal with lower strength because of them. I have changed a couple of Doctors because they started practicing too far away. They have reviewed my records and have updated me on things that I don't remember being told about and clarified some things that were given as side inference. I am also adding a new heart med and will be monitored to see if I need to change others on my list. 18's 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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