Hi Marty and all, Glad to hear from you. I am good today, enjoying the rain we have been having as of late. I have to go back to get my blood tested in about 5 weeks now, but I think the platelets have come back down. I wish there was someway we could test them daily like they do for diabetes. My hubby check his blood all the time, and gave himself the shots. I'm glad he could do it, because I don't think I could have, but then we do what we have to when it comes to our health, and the health of our loved ones. August is fast fleeing, and fall will soon be here. I really like the fall and am looking forward to it. I will be spending some time with my daughters soon, and that is always a treat. I liked your story on walking before you had your BMT, and I need to get back into my walking program. I love to walk, and it is one of the easiest exercises you can do. The story about the shoes the man gave you was precious! I reread your story recently, and I love it! Please share more if you write more, as you are such a good writer and I enjoy them. Blessings to all, Jeanie<3 In a message dated 8/14/2014 9:33:29 P.M. Eastern Daylight Time, [email protected] writes:
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 <[email protected]> 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, > [email protected] 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 > <[email protected]> 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, >> [email protected] 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 >> <[email protected]> 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, >>> [email protected] 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 >>> <[email protected]> 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, >>>> [email protected] 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 <[email protected]> >>>> To: cmlhope <[email protected]> >>>> 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, >>>> [email protected] 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 <[email protected]> >>>> To: cmlhope <[email protected]> >>>> 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 <[email protected]> >>>> To: cmlhope <[email protected]> >>>> 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 >>>> <[email protected]> >>>> 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 [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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