Hi Jeanie, Living here in Florida where the beach is only 13 miles from here I still can't go there because if I get a lot of sun then my GVHD starts acting up and I have had about a dozen skin cancers over the years after my bone marrow transplant. but nothing terribly dangerous.
Since I had total body radiation I must be very careful of the sun, so I just try to avoid it as much as I can. I just wanted to stop by and say hello to you. 18's, Marty On Thu, Aug 14, 2014 at 5:40 PM, ICANDOALLTTC via CMLHope <cmlhope@googlegroups.com> wrote: > Hi Marty and yes I'm sure you are right. I try to take each day as it > comes; just wake up and praise God that he is giving me one more day. > How are you? > I am good; the high platelets aren't bothering me, and they have probably > already gone back to normal; hopefully. > I read a lot; went to get a lot of books today; I get them second hand and > at a thrift store close to me. > I also buy those old vhf movies; hope my player doesn't give out on me. I > like the old movies. > I used to love the beach but the I can't take the sun like I used did. I > still love going and seeing the waves. > Our favorite place to visit was St.Augustine. > More later; we are fixing to have a thunder storm. > We have those a lot in the evening. > Blessings, > Jeanie<3 > > In a message dated 8/13/2014 8:40:06 P.M. Eastern Daylight Time, > wa2...@gmail.com writes: > > Hi Jeanie, > > In a way it is better to have higher then lower platelets, but > sometimes it is just some medicine that may be causing it. Even a > virus or a host of other things. Just be patient and I'm sure that it > will all work out. > > Yes, I also miss Mommy Lottie as I used to call her, but I have > learned not to dell on the past because it really doesn't help anyone > and I'm sure that she wouldn't want us to be sad. > > Jeanie, better things are coming for you and me. > > 18's, > > Marty > > On Wed, Aug 13, 2014 at 10:06 AM, ICANDOALLTTC via CMLHope > <cmlhope@googlegroups.com> wrote: >> Hi Marty and thanks, it's funny that I do worry about those platelets >> because they have gone out of whack 3 times now resulting in hospital >> stays >> and blood cleanses but you are right, could be some infection going on or >> etc--thanks I needed that. >> They were perfect about 2 weeks ago when my PCD took them. >> Yes, I know about the low hemg; I had to have transfusions when I was on >> Tasigna. >> My onc then transfused you if they went under 8. >> You actually get really tired when your platelets go up at least I do. >> Hang in there; we will keep on fighting. >> Still missing Millie; know she's not suffering anymore. It was just such >> a >> shock. She had just wished me a happy trip when I left on my vacation. >> Blessings, >> Jeanie<3 >> >> In a message dated 8/12/2014 7:55:46 A.M. Eastern Daylight Time, >> wa2...@gmail.com writes: >> >> Hi Jeanie, >> >> Having a count of 457,000 for your platelets is really nothing to >> worry about. Just wait for another few blood tests. It could be from >> several other things, probably the TKI or any other medication your >> on. So, just sit back and wait but don't stress yourself out. >> >> I wish that my Hemoglobin would be above 10 so be thankful that yours >> is over 13. Hemoblobin is what brings oxygen to all of the body and >> when it is low like mine is you jusy don't have any energy. >> >> Al and all things considered I think that your doing fine. >> >> 18's, >> >> Marty >> >> On Tue, Aug 12, 2014 at 7:44 AM, ICANDOALLTTC via CMLHope >> <cmlhope@googlegroups.com> wrote: >>> Hi Marty and all, >>> Yes that is so right; I have had to fight for just survival in and out of >>> the hospital. >>> My PCD doesn't care what he prescribes in reference with Sprycel; if I >>> tell >>> him I can't take it, he just says it won't hurt. >>> I had some bad news on platelets; the have risen to 457,000 but the onc >>> says >>> not enough to worry about, however, I have had my platelets jump into the >>> millions is just a short time. He is giving me 6 weeks to see what is >>> going >>> to happen. >>> Pray for the best. >>> My WBC was 7.87 >>> Only thing out of wack was >>> MCHC 31.7 low range 32-36.8 >>> RDW 54.3 high range 36.8-46.1 >>> Hemoglobine 13.7 range 11.4-15 >>> Mean Cell Volume 96 high range 80-94 >>> Potassium 4.8 high range 3.4-4.5 >>> Glucose 106 >>> Creatinine 1.1 high range 0.5-1.0 >>> Everything else in normal range >>> My Anc was 1.5 >>> Any comments? >>> My daughter took me and we were joined in lunch by my granddaughter and >>> great granddaughter and great grandsons. >>> Had a great time. >>> I hope everyone is good this morning. >>> Blessings >>> Jeanie<3 >>> >>> >>> >>> >>> >>> In a message dated 8/10/2014 9:19:28 P.M. Eastern Daylight Time, >>> wa2...@gmail.com writes: >>> >>> Jeanie, I wish you the best. I know that everything will be in your >>> favor. Good luck with your blood test tomorrow. By the way the next >>> time that the lab technician makes a mistake not only for not taking >>> those two tubes, you be sure to make a formal complaing against the >>> one that did it. Because of it you had to get stuck again. How would >>> they like it if it were them? >>> >>> You are your own best advocate. Remember that the squeeky hingde gets >>> the oil. Don't ever be afraid to open up your mouth no matter what. >>> This once happened to me but it was during my bone marrow transplant >>> and I almost died. I did make several complaints to find out the lab >>> tech also did it to several other patients. I spoke with the lab >>> manager and this tech was finally fired. >>> >>> When anything effects your health then you have the right to have >>> things go smoothly, and if that means complaining then that is what >>> you do. Man does this make me mad. >>> >>> GOD bless you Jeanie. >>> >>> 18's, >>> >>> Marty >>> >>> On Sun, Aug 10, 2014 at 6:13 PM, ICANDOALLTTC via CMLHope >>> <cmlhope@googlegroups.com> wrote: >>>> Hi Susan and all my CML warriors, >>>> I am excited about going to get my blood test tomorrow! >>>> I haven't been for 6 months and that is the longest I have ever been >>>> going >>>> to see my onc. My PCD did do a blood test and all was good so hoping >>>> all >>>> is >>>> good tomorrow. >>>> I also get a PCR done when I go; so looking forward to seeing those >>>> results, >>>> however they won't be in for a few weeks after the blood has been drawn. >>>> Did I tell you the story about going to my onc and having the blood >>>> drawn?it >>>> goes like this. >>>> I always go to the blood draw center and get my blood work done before >>>> seeing my onc. I was called in and the nurse started drawing my blood. >>>> Well, she only took 1 vial of blood and I was wondering as they always >>>> take >>>> two. >>>> So I saw my onc about 1 hour later; he was upset and come to find out, >>>> they >>>> hadn't done the blood for the PCR. I had to go back to the blood draw >>>> and >>>> have another vial taken. >>>> Now I have to make sure they are taking 2 vials when I go. I pray that >>>> I >>>> am >>>> still in remission. >>>> I hope everyone is good tonight. >>>> I am good and am going to try to get a good night's sleep for my >>>> adventure >>>> tomorrow. >>>> Blessing >>>> Jeanie<3 >>>> >>>> >>>> In a message dated 8/7/2014 11:51:13 A.M. Eastern Daylight Time, >>>> cmlhope@googlegroups.com writes: >>>> >>>> Jeanie, >>>> >>>> It is so good to know you also got fast results!!! We have so much to >>>> be >>>> thankful for. Have a great day! >>>> >>>> Susan F. Zimmerman >>>> >>>> >>>> -----Original Message----- >>>> From: ICANDOALLTTC via CMLHope <cmlhope@googlegroups.com> >>>> To: cmlhope <cmlhope@googlegroups.com> >>>> Sent: Thu, Aug 7, 2014 11:40 am >>>> Subject: Re: [CMLHope] Here's some posts! >>>> >>>> Hi Susan and so glad you are doing so well on the new med. I got my >>>> remission after only a few months on Sprycel. I am so happy that these >>>> new >>>> meds were developed as they have saved my life three time as of this >>>> date. >>>> Good luck, >>>> Jeanie<3 >>>> >>>> In a message dated 8/7/2014 10:01:30 A.M. Eastern Daylight Time, >>>> cmlhope@googlegroups.com writes: >>>> >>>> Hello Marty, Marcie and Skip, along with all the rest, >>>> >>>> So sorry to hear about your car acccident, Marcie! You truly did have >>>> your >>>> angel watching over you. >>>> >>>> Marty, still praying for your kidney to be donated....there's one out >>>> there >>>> for you, I just know it! >>>> >>>> Skip, good advice to those who might need the infusions about do they >>>> know >>>> how to treat shock....guess you can be thankful you are not in the >>>> hospital >>>> as it stands! >>>> >>>> Good news on my front - in three months on bosutinib (bosulif) at 100 >>>> mg, >>>> I >>>> have gone from 9.0 IS for the bcr/abl testing down to 1.70!!! >>>> I truly know this is unheard of in the treatment. I am one blessed >>>> person! >>>> I still deal with lack of energy and slight nausea once in a while, so >>>> got >>>> some medication for the nausea. My blood pressure was affected so now >>>> am >>>> on >>>> med for that....trying hard to get a handle on the diabetes numbers to >>>> get >>>> and stay as normal as possible. (What is normal for any of us???) >>>> >>>> May you all have a wonderful week as you concentrate on the positive >>>> instead >>>> of the negative. Hooray! I am also excited to meet David and Grace >>>> Greenburg, (greenie) coming up this month! >>>> >>>> Here's a thought: "If the people around you were dependent on your >>>> WORDS >>>> for nourishment, would they be dying of malnutrition?" >>>> >>>> 18's, >>>> Susan F. Zimmerman >>>> >>>> >>>> >>>> -----Original Message----- >>>> From: margood18 via CMLHope <cmlhope@googlegroups.com> >>>> To: cmlhope <cmlhope@googlegroups.com> >>>> Sent: Thu, Aug 7, 2014 9:46 am >>>> Subject: Re: [CMLHope] I haven't seen any poste lately >>>> >>>> Skip, so glad you are starting to feel better. You give me hope that I >>>> can >>>> keep going a long time with this disease. Are you all settled in your >>>> new >>>> apartment? Stay well. >>>> >>>> >>>> Marcie >>>> >>>> >>>> -----Original Message----- >>>> From: 'Skip Duffie' via CMLHope <cmlhope@googlegroups.com> >>>> To: cmlhope <cmlhope@googlegroups.com> >>>> Sent: Thu, Aug 7, 2014 8:47 am >>>> Subject: Re: [CMLHope] I haven't seen any poste lately >>>> >>>> Hello Marty, >>>> I am sorry for not posting much, I am just now starting to recover, I >>>> had >>>> that stint in the Hospital and when I got out , I went for my >>>> regular infusions. The red cells went great but then I had a very bad >>>> reaction to the platelets. They had to stop the infusion have an >>>> investigation, before I could receive any more platelets, I ended up >>>> with >>>> just 1 platelet yes 1. One platelet is the same as having 10. The >>>> machine cannot tell the difference from 0 or 10. I did not think I was >>>> getting out of this one, but here I am feeling not to darned bad. >>>> My advice to anyone getting regular infusions (platelets, red cells) >>>> check >>>> to see if they are prepared for shock. >>>> Marty I know your having a hard time as well, my prayers are for all us >>>> who >>>> face this dragon every day. >>>> SkipD (longest survivor in the world as far as we can tell) diag 1977 >>>> They are sure I had it longer but not just diag. >>>> >>>> >>>> On Thursday, August 7, 2014 1:15:18 AM, Marty Gartenberg >>>> <wa2...@gmail.com> >>>> wrote: >>>> >>>> >>>> Is everyone alright? I haven't seen anything poster for nearly two >>>> weeks??? >>>> >>>> 18's, >>>> >>>> Marty >>>> >>>> -- >>>> -- >>>> [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] >>>> A support group of http://cmlhope.com >>>> 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