Have a wonderful trip and happy Thanksgiving to all. Going to Moffitt dec 3rd. Will let you know how every thing is then. Fight on dear Warriors. Live each day to the fullest. Eat drink and be merry. Lol 💗😇💋
My Motto: Faith and Pills Jeanie 🐟🐟18,s 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 Nov 21, 2015, at 4:10 PM, 'Susan Zimmerman' via CMLHope > <[email protected]> wrote: > > Hi Beth, > Thanks for asking about me. I have not set up an appt. yet for Chicago. > Went back to 100mg a day of bosulif because I am trying to get my body to > assimilate the vitamins and minerals and nutrients that will give me energy. > They think I'm on 200 mg at this point. I must call them next week in > Chicago and make an appt. I still feel very blessed compared to so many who > suffer regularly. So glad you are getting a reprieve from the medicine!! > Hoping you are feeding yourself a very good brand of vitamins and minerals > while you are off the meds. Liquid always assimilates faster and easier. > Our bodies need 60 minerals and 30 vitamins and nutrients regularly in > certain amounts to receive everything we need. There is no possible way for > us to receive it through our food. Wheat now stands 10 inches tall in the > fields, in opposition to 3 feet that it used to be. The Round-up et al that > is put on the fields goes into our bodies and destroys the crops first. For > those who have been told not to take supplements while on a chemo drug......I > think that is balogna with a capital B. We need them much MORE because the > chemo trips us of the good stuff, especially the probiotics needed to keep > our healthy flora going strong in our stomachs and upper and lower > intestines. > > I will write you privately about coming to Chicago. We often have to run in > and run out quickly because of my husband's work. Maybe we will be able to > see you! > > I will be out of town also from the 22nd thru Dec. 5th. Going to New Orleans > and Florida. Grandkids first for T-giving and then to see his boss in > Sanford, FL and have a little vacay. We will be near Disney staying. Hooray, > hope the weather holds! > > Beth, enjoy your week in Florida, too! > > Happy wonderful Thanksgiving to everyone!!!! > Blessings and 18's, > Susan Z > > > > -----Original Message----- > From: bkbarney via CMLHope <[email protected]> > To: cmlhope <[email protected]> > Sent: Thu, Nov 19, 2015 8:27 pm > Subject: Re: [CMLHope] Test Day > > Dear Susan, > > Concerned to hear your news...I know you wanted to hear better..It's so hard > when we hit an unexpected bump in the road....when are you coming back to see > your doc? I am in town except for Dec. 12-19th...would love to meet you this > time. And Greenie....will be in Fort Myers so hopefully can see you and your > sweetie..and my other cml buddies who live down south...chemo brain...forgive > me!. > Just > I have gone off everything...my BCR was good enough to take some time to > cleanse my body...was just too sick....will go back on in a few > weeks...enjoying GRAPEFRUIT!!! for a couple of weeks!. > > Love to all and a happy and healthy Thanksgiving to each and everyone of > you... > > 18's and love, Beth > > > -----Original Message----- > From: 'Susan Zimmerman' via CMLHope <[email protected]> > To: cmlhope <[email protected]> > Sent: Fri, Oct 30, 2015 8:26 am > Subject: Re: [CMLHope] Test Day > > Hi all, > > My bcr/abl results were not as great as I hoped. Last time I was > .012.....almost to zero. This time I expected to be zero, but alas I am up > to .348. So doc wants me to go to 300 mg bosulif, instead of 100 mg. I am > compromising and will go to 200 so I don't have to stay in the bathroom all > day. I was ready to get a local test next time and forego going to Chicago > every 3 months. Now she wants to see me in one month after I up the dose. > Ugh! So thankful I do have a wonderful doc even if I do decide myself on my > dosage. She does not put me down about it, and supports me in every way. > > Beth, keeping my fingers crossed for you and saying a prayer. Marty, you are > so loved and hope your kidney stuff is getting better. Your pics were > beautiful. > > 18's and blessings, > Susan Z > > > -----Original Message----- > From: Marty Gartenberg <[email protected]> > To: cmlhope <[email protected]> > Sent: Thu, Oct 29, 2015 10:11 pm > Subject: Re: [CMLHope] Test Day > > Yes since everything has been going on I had leave my home in PA empty for > nearly two years, but let me tell you something about that crisp clean air > and simply beautiful colors of all of the trees that you can see for miles. > An example is route 97 which separates upstate NY from PA with the Delaware > river in between them. Route 97 goes from Port Jervis all the way down to > past Hancock NY, and is considered the most scenic road it the United States. > Right near Port Jervis there is route 97 winding like a snake on the edge of > the road and is about 1,000 feet above the Delaware River. > > I have driven in that area and I wouldn't ever drive on it in the snow or at > night. If by chance your ever there and I am in PA it is only right across > the Robeling bridge which is actually a one lane wooden bridge only allowing > one way of traffic then once it stops then the other way. > > I am wishing you well with your results. > > Don't forget to let everyone know. > > 18's, > > Marty > > > >> On Thu, Oct 29, 2015 at 6:31 PM, bkbarney via CMLHope >> <[email protected]> wrote: >> Hi all, >> >> Just saying hi! Wanted you all to know that I am thinking of you and sending >> everyone a big hug and happy fall wishes... I know some of you southern >> folks..will enjoy your 90 degree Florida temperatures coming down...but us >> up north are enjoying the beauty of fall..it's cold today, but should be >> back up in the 60's by Sunday....Indian summer.....I just love it... >> >> did BCR on Monday..waiting for results..then will decide plan for next few >> months... >> >> love, hugs and 18's to all, >> >> >> Beth >> >> >> -----Original Message----- >> From: 'Icandoallttc' via CMLHope <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Sun, Oct 11, 2015 1:07 pm >> Subject: Re: [CMLHope] Test Day >> >> Hi Beth >> I can never go off the meds either. My counts will shoot up fast. >> Good luck >> ❤️ >> >> My Motto: Faith and Pills >> Jeanie 🐟🐟18,s >> 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 Oct 11, 2015, at 1:43 AM, bkbarney via CMLHope <[email protected]> >> wrote: >> >> Dear Jeannie, Richard, Susan, Marty, et al...thanks very much for responding >> to my question. I am scared, but want to try something to help myself. We >> will see what Dr.Druker has to say. In the mean time, what I do know, having >> been off of sprycel for months at a time to deal with major surgeries >> several times, is that I always come out of remission, and quickly. I don't >> hold without the sprycel. Usually the cells are showing at very low numbers, >> but it means that without the agent that keeps them in check, cancer grows. >> I wish this were not so. And I know it's not for some lucky folks. Maybe >> with time, this will change for me. For now I am developing a plan..will >> keep you all posted. >> >> love and 18's Beth >> >> >> -----Original Message----- >> From: Marty Gartenberg <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Thu, Oct 8, 2015 5:56 am >> Subject: Re: [CMLHope] Test Day >> >> Hi Jeannie, Beth, Richard as well as everyone on this site, >> >> I have a friend (not had a friend, and still have this friend) who had CML a >> little while after I had my transplant. At the time there were no TKI's but >> there were only two things available. One was a bone marrow transplant which >> was in it's infancy at the time and the other was Alpha interferon but on an >> early study basis which actually was a blind study. Depending on if those in >> this study would be receiving this Alpha Interferon or a placebo. >> >> Even before my friend I had to chose the Interferon or the placebo in this >> blind study. I spoke with a lot of oncologists about what to do. However >> there were no concise answers because on one hand there was something that >> was still in a blind study and who would know if that would even be given to >> this patient or would the BMT be the way to go? >> >> However, since there were no matching donors, but one, his brother who >> refused, and I could never understand that, but since there were no other >> choices he had no other choice but to try that blind study. Well he was >> lucky enough to be accepted. And I have to tell you that he really suffered >> some really bad side effects for years afterwards. >> >> Eventually they were unable to detect any more CML, but he still refused to >> go off of the Alpha Interferon and I suppose this was a crutch in his life >> so he still remained on it for many years. So I guess that he finally >> decided to go off of it. Once that happened his life took a dramatic turn. >> No more side effects and no more CML, and he is still alive and doing >> remarkably well today. >> >> As far as me, well my only choice was the BMT because of two reasons. Since >> my white blood counts were at the time over 486,000 and doubtful that I >> would survive, but basically the same thing with the BMT but at least I had >> my sister as a donor who just happened to be a perfect HLA match. So I tried >> the BMT, and it worked. >> >> But yet there is still more to this story and some of you might remember >> Zavie Miller and all three of us used to get together, and called ourselves >> The Three Musketeers. This was well after Zavie got to know Dr. Druker and >> he was started on STI-571 which when approved by the FDA turned into >> Gleevec. >> >> So after that we all turned into The Three Musketeers. All of this is >> ancient history but my point is that whether to go off or continue on the >> TKI's because you may be actually "cured" of CML but you may still hold the >> touch of the crutch. So you see that there are different strokes for >> different people. >> >> Fortunately I don't have to make the choice because I already did and >> believe me I really did suffer, but in the end it was worth it. >> >> Now knowing what I would do if my circumstances were different I think that >> I would be off these TKI's and live my life, and if something happens then >> you will have to deal with it, and you will. Remember a crutch is a terrible >> thing to have. >> >> I spend a lot of time trying to help, and your all very special people to me >> as I am to you. >> >> Those are my words of wisdom and please never forget what 18's stands for. >> It is life yours and mine! >> >> 18's >> >> Marty >> >> >> i >> >>> On Thu, Oct 8, 2015 at 12:24 AM, Richard H <[email protected]> wrote: >>> Just a quick glimpse about a med break. The end of March when I went to >>> the hospital with Vertigo, The short break I had on medicine did wonders >>> for me. Found some I shouldn't have been taking, stopped some all >>> together. I have felt so much better that I would do it again under total >>> control. Worried? Yes, but I realized afterwards it should have been done >>> earlier. >>> >>> Richard H. >>> >>>> On Wednesday, October 7, 2015 at 4:27:30 PM UTC-5, Beth wrote: >>>> >>>> HI Jeannie and all, ...I am due for BCR abl testing so should get it in >>>> the next two weeks, results two weeks later...so I will update when I know >>>> more...Had a consult today at the Block Center here in Illinois.People >>>> tend to love him or hate him... I really like him. He thinks all my issues >>>> are sprycel related. Thinks I should go off everything and have drug >>>> holiday to give my autoimmune system a rest....steroids briefly to try and >>>> lower cpk so I can move better without such a severe boomerang effect. >>>> Back issues are no worse. That's good news from my end....since there have >>>> been several of my fellow warriors here who have lost there remissions >>>> spontaneously after years of successful treatment with their TKI's. I am >>>> scared to go off, unless I have to ...ie. like I did for past >>>> surgeries....however, I am thinking about it...perhaps I am just too >>>> toxic, and time off would help me to rebuild and repair, and tolerate >>>> better the TKI"s when I re-uptake in the future......so I am sitting with >>>> this decision..Not sure what I am going to do...except pray, and listen to >>>> other's words of wisdom....I know if I ask Dr. Druker, he would be fine >>>> with my taking a drug holiday..but I emailed anyway......thoughts from my >>>> friends here???? >>>> >>>> >>>> Love and 18;s, Beth >>>> >>>> -----Original Message----- >>>> >>>> >>>> >>>> From: 'Icandoallttc' via CMLHope <[email protected]> >>>> To: cmlhope <[email protected]> >>>> Sent: Wed, Oct 7, 2015 12:59 pm >>>> Subject: Re: [CMLHope] Test Day >>>> >>>> Hi Beth and how are you?? >>>> Would love to have an update on all. Thanks!! ❤️❤️ >>>> >>>> My Motto: Faith and Pills >>>> Jeanie 🐟🐟18,s >>>> 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 Oct 7, 2015, at 11:35 AM, bkbarney via CMLHope >>>> <[email protected]> wrote: >>>> >>>> Dear Richard, >>>> Sounds like good news all the way around. Hope your counts continue to >>>> hold well and the November visit to the onc is a positive one! Your wife >>>> is healing well..slow and steady. Thanks for sharing the good >>>> news....Keeping you both in my thoughts and prayers. Beth >>>> >>>> >>>> >>>> -----Original Message----- >>>> From: 'Icandoallttc' via CMLHope <[email protected]> >>>> To: cmlhope <[email protected]> >>>> Sent: Wed, Oct 7, 2015 9:26 am >>>> Subject: Re: [CMLHope] Test Day >>>> >>>> Hi Richard and happy you are better. I hope your wife will be home soon. >>>> Prayers always. >>>> >>>> My Motto: Faith and Pills >>>> Jeanie 🐟🐟18,s >>>> 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 Oct 7, 2015, at 12:01 AM, Richard H <[email protected]> wrote: >>>> >>>> All is good at this house. Saw Kidney Dr. and my tests have improved the >>>> last 3 times. Took my CBC and I am keeping my Hem. is holding at 10. I >>>> hope it stays there until the end of Nov. when I visit my ONC. >>>> >>>> My wife is improving, and will see the Dr. Oct. 21st to see if she can >>>> start putting weight on the right side. Shoulder seems to be healing >>>> nicely. She has the healing knot on the shoulder and is feeding herself >>>> with her right hand and is raising the upper arm to almost shoulder height >>>> without pain. We are hoping she can come home in Nov. when she can get >>>> out of the wheel chair and up and down without help. Due to heart surgery >>>> and a pacemaker all I can due is call for help if she has a problem. >>>> >>>> 18's >>>> >>>> Richard H. >>>> -- >>>> -- >>>> [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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