Sent from my iPhone Is anyone on ponatinib? Did your insurance pay for it? I have Humana part D Thanks Jeanie > On Jan 17, 2015, at 12:52 AM, bkbarney via CMLHope <[email protected]> > wrote: > > great news that the BMB went so easily.. I know at Moffit they put you out > for them..up here in Chicago..they just do locals!!! I am staying hopeful > for you Jeannie...sending good thoughts. B > > > -----Original Message----- > From: Marty Gartenberg <[email protected]> > To: cmlhope <[email protected]> > Sent: Fri, Jan 16, 2015 6:26 pm > Subject: Re: [CMLHope] Hi all finally going in for an endoscopy next week. > > Hi Jeanie, > > Wow, your "lucky" for a better word to use. I had 17 of them and was never > put out OUCH x 17<33A.gif> > > 18's, > > Marty > >> On Fri, Jan 16, 2015 at 10:54 AM, 'Icandoallttc' via CMLHope >> <[email protected]> wrote: >> Finished Bma --waiting on doctor-- great he had to attend computer seminar. >> >> Every thing went very well-- was asleep about 20 minutes. >> >> Went down and had breakfast--coffee finally!!!! >> Blessings >> Jeanie<emoji_u1f41d.png> >> >> Sent from my iPhone >> >> On Jan 16, 2015, at 5:20 AM, "'Icandoallttc' via CMLHope" >> <[email protected]> wrote: >> >>> Hi Beth. >>> Thanks for the uplift. We took aspirin for years before they told us to eat >>> with them. My dad and brother has ulcers. >>> Hard to heal. >>> My brother ended up having one-half his tummy out. >>> I feel I might have them. >>> Blessings >>> Jeanie❤️ >>> >>> >>> Sent from my iPhone >>> >>> On Jan 15, 2015, at 5:29 PM, bkbarney via CMLHope >>> <[email protected]> wrote: >>> >>>> >>>> good luck on your BMB tomorrow Jeannie. I will be thinking of you. AS for >>>> results of endoscopies, I had a small stomach ulcer..the result of taking >>>> NSAIDS on an empty stomach... to battle a broken hand. it was years ago >>>> but Iearned my lesson. >>>> I never take any pain med without food. >>>> >>>> thinking of you. big hug,. Beth >>>> -----Original Message----- >>>> From: 'Icandoallttc' via CMLHope <[email protected]> >>>> To: cmlhope <[email protected]> >>>> Sent: Thu, Jan 15, 2015 12:34 pm >>>> Subject: Re: [CMLHope] Hi all finally going in for an endoscopy next week. >>>> >>>> Hi all and thanks so much for the updates in endoscopy. >>>> Did anyone have anything discovered during the procedure? >>>> I have had an ongoing pain in my right side. I am hoping they can solve >>>> the mystery. >>>> Getting the Bma early in the morning. No food or drink after midnight. >>>> Sure will miss my morning cup if coffee. >>>> They also want to do a ct scan but put that off for a couple of weeks. >>>> I had one done last year. >>>> Blessings >>>> Jeanie >>>> >>>> >>>> Sent from my iPhone >>>> >>>> On Jan 15, 2015, at 12:43 AM, Richard H <[email protected]> wrote: >>>> >>>>> You are correct about both. One time, I had both back to back. The Dr. >>>>> didn't care for my remark about using clean equipment so now they >>>>> schedule them at different times. >>>>> >>>>>> On Wednesday, January 14, 2015 at 5:19:39 PM UTC-6, Beth wrote: >>>>>> Yes Jeannie, I have had an endoscopy....NO problem...at least for me. >>>>>> Twilight meds, remember nothing....not even a sore throat >>>>>> afterwards....I've had two of them. several years apart. Hope yours goes >>>>>> as well as mine. Easier on the body than a colonoscopy. Good luck with >>>>>> the bone marrow biopsy Friday. glad they will take a good look at what >>>>>> is going on and can reset from there...So sorry you are so >>>>>> nauseated.....Take good care...and jeannie, if you feel at all like >>>>>> talking, happy to listen. Feel free to email me at personal email and I >>>>>> can give you phone number. >>>>>> >>>>>> Beth >>>>>> >>>>>> >>>>>> -----Original Message----- >>>>>> From: 'Icandoallttc' via CMLHope <[email protected]> >>>>>> To: cmlhope <[email protected]> >>>>>> Sent: Wed, Jan 14, 2015 4:23 pm >>>>>> Subject: Re: [CMLHope] Hi all finally going in for an endoscopy next >>>>>> week. >>>>>> >>>>>> Anyone have an endoscopy ? Jeanie >>>>>> >>>>>> Sent from my iPhone >>>>>> >>>>>> On Jan 14, 2015, at 2:14 PM, "'Icandoallttc' via CMLHope" >>>>>> <[email protected]> wrote: >>>>>> >>>>>> Maybe they can find out why my side is hurting. >>>>>> Blessing everyone >>>>>> Jeanie >>>>>> >>>>>> Sent from my iPhone >>>>>> >>>>>> On Jan 14, 2015, at 10:57 AM, "'Icandoallttc' via CMLHope" >>>>>> <[email protected]> wrote: >>>>>> >>>>>> They put you to sleep for Bma. >>>>>> >>>>>> Sent from my iPhone >>>>>> >>>>>> On Jan 14, 2015, at 10:56 AM, "'Icandoallttc' via CMLHope" >>>>>> <[email protected]> wrote: >>>>>> >>>>>> Hi it's not me who lost their dad-- I lost mine many years ago. >>>>>> I am still so nauseas. >>>>>> Hanging in there. >>>>>> Doing Bma fri. >>>>>> Blessings >>>>>> Jeanie >>>>>> >>>>>> >>>>>> Sent from my iPhone >>>>>> >>>>>> On Jan 13, 2015, at 4:06 AM, sherri swanson <[email protected]> >>>>>> wrote: >>>>>> >>>>>> Jeanie, >>>>>> >>>>>> I'm so sorry for your loss. You will always have them in your heart. >>>>>> I lost my parent a long time ago but I miss them as if it were >>>>>> yesterday. When I read your message, I looked at their photo and asked >>>>>> them to take good care of your dad. >>>>>> >>>>>> L'chaim, >>>>>> >>>>>> Sherri >>>>>> >>>>>> >>>>>> On Mon, Jan 12, 2015 at 1:14 PM, 'Icandoallttc' via CMLHope >>>>>> <[email protected]> wrote: >>>>>> Thank you Greenie >>>>>> I need that. >>>>>> Blessings >>>>>> Jeanie >>>>>> >>>>>> Sent from my iPhone >>>>>> >>>>>> On Jan 12, 2015, at 1:30 PM, Myvety2k via CMLHope >>>>>> <[email protected]> wrote: >>>>>> >>>>>> Hi Jeanie, hang in their, I'm thinking good thoughts and passing them >>>>>> on to you. >>>>>> >>>>>> greenie >>>>>> >>>>>> In a message dated 1/12/2015 1:08:27 P.M. Eastern Standard Time, >>>>>> [email protected] writes: >>>>>> Thanks Susan. >>>>>> I'm hanging in there!!! >>>>>> Blessings. >>>>>> Jeanie<emoji_u1f41f.png><emoji_u1f41f.png><emoji_u1f41f.png> >>>>>> >>>>>> Sent from my iPhone >>>>>> >>>>>> On Jan 11, 2015, at 11:17 PM, "'Susan Zimmerman' via CMLHope" >>>>>> <[email protected]> wrote: >>>>>> >>>>>> Awwwww Marcie! >>>>>> >>>>>> I am so sorry for your loss, dear one. I know you've been being a good >>>>>> caregiver for several years to your dad. You will be rewarded some day >>>>>> for that. My heart hurts for you, so will surely be lifting you in >>>>>> prayer. No matter what the age, the loss is huge when we are the ones >>>>>> left behind. It was so kind of your rabbi to mention your CML battle. >>>>>> I pray you stop having those horrible cramps, too. Traveling mercies for >>>>>> you all. >>>>>> >>>>>> And Jeanie, also know what it's like to have a bad day from hydrea. >>>>>> Many (including me) felt like they have the flu with the nausea, and I >>>>>> pray this will not last long at all. A new day is coming, and I sure do >>>>>> hope your doc puts you on something that works! (maybe bosulif?) Here's >>>>>> wishing you the best, dear one. >>>>>> >>>>>> Love and 18's, >>>>>> >>>>>> Susan >>>>>> >>>>>> -----Original Message----- >>>>>> From: 'Marcie Goodman' via CMLHope <[email protected]> >>>>>> To: cmlhope <[email protected]> >>>>>> Sent: Sun, Jan 11, 2015 10:59 pm >>>>>> Subject: Re: [CMLHope] Jeanie's relapse >>>>>> >>>>>> Hi Jeanie, >>>>>> >>>>>> So sorry you are having a tough time. I'm praying for you to have good >>>>>> test results and a much better week. >>>>>> >>>>>> My 94 year old father passed away on Friday, funeral was today. During >>>>>> evening prayers our rabbi asked that everyone pray for not only my >>>>>> father and our family but for our group struggling with the impact of >>>>>> CML. My dad hated the fact that I had this illness and knew that I had >>>>>> such a wonderful online support family. >>>>>> >>>>>> So lots of prayers for you and all of us headed out from Baltimore all >>>>>> week! >>>>>> >>>>>> Much love, >>>>>> >>>>>> Marcie >>>>>> >>>>>> Sent from my iPhone >>>>>> >>>>>> On Jan 11, 2015, at 9:33 AM, 'Icandoallttc' via CMLHope >>>>>> <[email protected]> wrote: >>>>>> >>>>>> Hi Marty. >>>>>> I feel so bad today!!! >>>>>> Thinks it's from the hydrea. >>>>>> I will print that out and keep it close. >>>>>> I love psalms also. >>>>>> Keep praying. >>>>>> Jeanie 18's >>>>>> >>>>>> Sent from my iPhone >>>>>> >>>>>> On Jan 11, 2015, at 8:05 AM, Marty Gartenberg <[email protected]> wrote: >>>>>> >>>>>> Jeanie, I know that your feeling low right now but things will >>>>>> work out for you. You must have this in your heart and I know that you >>>>>> do. FOCUS. >>>>>> >>>>>> This was something that was given to me by one of my close friends when >>>>>> I had to live in that plastic bubble for all of those many months. I >>>>>> would read it all the time and I am now passing it on to you, and it is >>>>>> being sent to you from my heart because I remember my doubts but then >>>>>> again I also remember my strengths. >>>>>> >>>>>> EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF >>>>>> CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE >>>>>> IN YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL >>>>>> GET (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL >>>>>> GET. >>>>>> WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES >>>>>> OF MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING >>>>>> EVERYTHING INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN >>>>>> WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF >>>>>> POSSIBILITY. >>>>>> EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE >>>>>> BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE >>>>>> SUCCESSFUL OUTCOME... >>>>>> FOCUS... >>>>>> >>>>>> Yes Jeanie you just keep on focusing because you are much more powerful >>>>>> then you think. >>>>>> >>>>>> Now you know why I keep on sending 18's. >>>>>> >>>>>> 18's, >>>>>> >>>>>> Marty >>>>>> >>>>>> On Sat, Jan 10, 2015 at 10:38 AM, 'Icandoallttc' via CMLHope >>>>>> <[email protected]> wrote: >>>>>> Hi Marty >>>>>> Thanks for you uplifting message. >>>>>> I am back to square one with my counts-- >>>>>> 700 thousand platelets >>>>>> 163.28 WBC >>>>>> ANC high >>>>>> Creatine high >>>>>> Potassium high >>>>>> Took me off sprycel. >>>>>> Allipurinoll 2 pills >>>>>> Hydrea 3 twice a day >>>>>> Yes I will fight!!! >>>>>> Just so tired. >>>>>> I think dr will put me on new drug mon. >>>>>> Got to see if there is a mutant. >>>>>> Prays and love to all. >>>>>> 18's. <emoji_u1f41f.png> >>>>>> Jeanie >>>>>> >>>>>> >>>>>> Sent from my iPhone >>>>>> >>>>>> On Jan 10, 2015, at 4:31 AM, sherri swanson <[email protected]> >>>>>> wrote: >>>>>> >>>>>> Hi Richard, >>>>>> >>>>>> If it's one thing I got, It's Attitude! At least that's what my mom >>>>>> would tell me when I was a teenager. LOL >>>>>> >>>>>> Sorry to hear about the car. This cold weather can be brutal on a car's >>>>>> battery. Glad you were able to get a new and now you’re good to go. >>>>>> >>>>>> Uor wind chills have been bad too. And we have some open fields so there >>>>>> is nothing to block that wind. The other morning it was so cold that >>>>>> the water froze in our community and none of had any water for awhile. >>>>>> It's a good thing I'm an early raiser and I took my shower while we had >>>>>> water. >>>>>> >>>>>> Currently, it is -7 with a wind chill of -25 where I live and it isn't >>>>>> going to be above zero until 9 am. That's cold. >>>>>> >>>>>> Stay warm Richard and think spring! >>>>>> >>>>>> L'chaim, >>>>>> >>>>>> Sherri >>>>>> >>>>>> On Fri, Jan 9, 2015 at 11:29 PM, Marty Gartenberg <[email protected]> >>>>>> wrote: >>>>>> Hi Jeanie, >>>>>> >>>>>> So many things effect your kidneys. The simple ageing factor is just one >>>>>> of them. Some medicines will also contribute to kidney function probably >>>>>> some of these TKI's. Mine finally gave out from all of >>>>>> the chemotherapy and radiation I had more then 25 years >>>>>> ago. >>>>>> >>>>>> I can make a suggestion: If you are not diabetic try drinking cranberry >>>>>> juice. Not the ones that are mixed up with juices like grape juice. >>>>>> Ocean Spray has pure cranberry juice so you might want to try it. Even >>>>>> if you are diabetic they also make a light cranberry juice. >>>>>> >>>>>> You know what? You have been through so much that this is only a bump in >>>>>> the road for you, and so it is for me. >>>>>> >>>>>> We have two choices. One, continue to fight and the other is not an >>>>>> option for me or you. >>>>>> That is why I always end any of my posts with 18's. You just hang in >>>>>> there sweetie. >>>>>> >>>>>> Marty >>>>>> >>>>>> On Fri, Jan 9, 2015 at 7:55 AM, ICANDOALLTTC via CMLHope >>>>>> <[email protected]> wrote: >>>>>> Hi Sherri, >>>>>> I think the tki's contribute to kidney disease. I think that I am in >>>>>> the beginning of the disease and I have been on tki's for 11 years now. >>>>>> Hang in in there; blessings >>>>>> Jeanie<3 >>>>>> >>>>>> In a message dated 1/9/2015 3:21:09 A.M. Eastern Standard Time, >>>>>> [email protected] writes: >>>>>> Hi Marty, >>>>>> >>>>>> Thanks for the prayers and right back at ya. >>>>>> >>>>>> I've been struggling with my kidney disease for many years and didn't >>>>>> know it, and then one day voilà the doctors found >>>>>> that there was a problem and that I'd been fighting it for years hence >>>>>> the diagnoses of Chronic Kidney Disease. And the funny thing is, I'm the >>>>>> only one in my entire family that has any of these diseases. My family >>>>>> had its share of health issues from heart disease to diabetes. But never >>>>>> anything like what I have. All my doctors just shake their heads. I tell >>>>>> them that I like to keep things interesting. And what they like is that >>>>>> I have a sense of humor. And at this point, it is much better to joke >>>>>> and laugh than to worry and cry. While I still take what I have >>>>>> seriously, I'm just happy to be here. >>>>>> >>>>>> I would be a lot happier if the weather here would warm up. For crying >>>>>> out loud it was -5 here yesterday and I was out in it. Now that is one >>>>>> hearty person or a very foolish one. The jury is still out on >>>>>> that one. Today it is going to be a balmy 8. Woohoo! A heat >>>>>> wave. And, again I'll be out in it as I have to go and get a Rx that I >>>>>> need. >>>>>> >>>>>> L'chaim, >>>>>> >>>>>> Sherri >>>>>> >>>>>> On Thu, Jan 8, 2015 at 10:40 PM, Marty Gartenberg <[email protected]> >>>>>> wrote: >>>>>> Dear Sherri, >>>>>> >>>>>> Yes, you are a fighter and it takes one to know one. I pray that >>>>>> everything turns out well for you. >>>>>> >>>>>> And you are correct that all of the radiation and chemotherapy did >>>>>> destroy both of my kidneys. It has been over 25 years that I had my BMT. >>>>>> It took many years for my kidneys to fail and that is probably why most >>>>>> transplant centers will usually not use total body radiation any more >>>>>> unless it is really needed. >>>>>> >>>>>> 18's, >>>>>> >>>>>> Marty >>>>>> >>>>>> On Thu, Jan 8, 2015 at 1:31 PM, sherri swanson <[email protected]> >>>>>> wrote: >>>>>> Hi Marty, >>>>>> >>>>>> The doctors are trying to treat the different illnesses that are >>>>>> included in my condition. There are so many and they do so many >>>>>> different things, that I am happy just to to be here. I agree that as we >>>>>> get older there are some unusual things that that find us. But in the >>>>>> long run, we all got something. I'm a survivor. It's what I do. So when >>>>>> I found out on Monday that I have a large mass on my thyroid, I told my >>>>>> doctor I guess we're going to be busy this winter. At least I'm not an >>>>>> alarmist. <35C.png> >>>>>> >>>>>> I too have trouble with my kidneys. Not to the extend that you do, I'm >>>>>> working to keep myself at the current level of stage III Kidney Disease. >>>>>> Some days, I'm good others, not so much. Lately I've not been doing so >>>>>> good and I've had to go and buy new shoes as my feet have been so >>>>>> swollen that my current size no longer fit. I wear >>>>>> compression socks all the time as well. >>>>>> >>>>>> My Nephrologist ran some blood work and found that my sodium was very >>>>>> low and and so was a bunch of other levels. Now, he is an alarmist. If I >>>>>> even look like I'm getting a cold he freaks out. I love him dearly, and >>>>>> I do what he says, but I can't sneeze without him making me go see my GP >>>>>> or the Oncologist or whatever doctor he thinks I need to see. >>>>>> >>>>>> I've heard that when you have a BMT and have to have radiation and >>>>>> chemo, sometimes kidney failure is possible. How long have you been on >>>>>> the list for transplant? >>>>>> >>>>>> Well, I'm glad that you are here and that you are strong. You're an >>>>>> inspiration to all of us. Thanks for all you do Marty. >>>>>> >>>>>> L'chaim >>>>>> >>>>>> Sherri >>>>>> >>>>>> On Thu, Jan 8, 2015 at 10:0 >>>>>> ... >>>>> >>>>> -- >>>>> -- >>>>> [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 [email protected] >>>>> To unsubscribe from this group, send email to >>>>> [email protected] >>>>> 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 [email protected]. >>>>> For more options, visit https://groups.google.com/d/optout. >>>> >>>> -- >>>> -- >>>> [CMLHope] >>>> A support group of http://cmlhope.com >>>> 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