Well Cathy, let me personally welcome you. I know that your fairly new to CML but don't let that stop you. As you will notice this is* not* "death sentence" anymore because of the many advances that have been made over the last ten years or even more.
Let me ask you what medicine are you taking (TKI's) and how are you tolerating them? I am sorry that your dealing with some back pain. What were those five surgeries that you had? And from what your telling me about it does sound like it may be coming from your kidneys but on the other hand your also keeping good blood counts including your Creatnine counts. Can you mention what their now? And your pain very well could be coming from your TKI's. Just so you know I had a bone marrow transplant almost 27 years ago and all of the radiation and chemotherapy killed my kidneys about 6 years ago and i was on dialysis for four years and finally was able to get another transplant, my kidney. But who is keeping score? I am... So i really know what i am talking about because i went through it. Now i am not a doctor but as i mentioned that i went through all of this. But you know what Cathy, i'm still alive and basically have a good quality of life, and by the way so do you. Please go see that Nephrologist I am sure that he or she will set you on the right track. A tip for you. If your not diabetic then start drinking Cranberry juice it washes out your kidneys. If I could be of any help to you just let me know. By the way there are a lot of knowledgeable people on here that can help Since you are a "newbee" here i want to mention two numbers that i always end any of my posts with. 18's, is the symbol for life. And so it goes... Marty On Wed, May 31, 2017 at 8:56 AM, kathy walls <cand...@originalsbykate.com> wrote: > I'm still fairly new, was diagnosed in Jan 15. I'm not technically in > remission, but we (dr and me) have reached a point where he is happy with > my numbers and I feel I have quality of life, except left side flank pain > that radiates around to my above my buttocks. Dr says it's my back since > I've had 5 surgeries, but back dr says everything looks good. Have had > ultrasounds etc. something I find interesting is that when the back gets > really bad, my urine will show trace amounts of blood and bacteria. My > kidney function is very good so they tell me. I'm scheduled to see a > nephrologist end of the month. Basically I feel like my onc dr says > leukemia doesn't have pain associated with it. Advice, comments???? > > Sent from my iPhone > > On May 31, 2017, at 6:49 AM, Marty Gartenberg <wa2...@gmail.com> wrote: > > Hi everyone, > > Susan, I would like to tell you and everyone else for that matter, I once > knew a woman and i can't remember just who it was but something brought me > back to one of the things she mentioned to me. I wish that i could remember > but perhaps it will come back to me? > > She was questioning me about that 18's i always write at the end of my > posts. She asked me what is the meaning of 18's? I told her that it means > CHI which means LIFE and there is actually a physical symbol usually warn > around the neck on a gold chain and it is also made of gold but it could be > made of anything. It can even be worn as a bracelet or an ankle chain. > She asked me if i could show her a picture of what it looks like. There > are many and they come in mainly gold, silver, and anything you can think > of. The last i heard was that she had a gold tattoo put on her ankle with > a chi or some call it chai. > > 18's, > > Marty > > <image.png><image.png> > > On Wed, May 31, 2017 at 12:07 AM, 'Susan Zimmerman' via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Hi Marty and Jean, >> >> I am glad your word is "blessed", Jean. Sorry I forgot to mention that in >> the last email. I often use that word, too! We really are all blessed >> every day. I belong to a couple of other groups that are not nearly so >> positive. I try to encourage! >> >> Marty, your word is "watch". With the description about reminding you of >> waking up every day, that is perfect!!! >> >> Richard, I wonder if one word could be a motivational word that has >> personal meaning for you throughout the remainder of the year. To think of >> it often and be encouraged by it! What is your word? >> >> I think we heard from Greenie, too. What's your word for the year? >> >> Mine was picked in January. It is "DELIGHTED", and I wear it imprinted on >> a bracelet around my wrist. It reminds me to be delighted with life, as >> there are so many good and great things along the journey. >> >> How bout all those others out there who haven't picked a word that will >> always get you closer to your purpose? >> >> Just watched The Fugitives as a comedy on netflix. Nick Nolte and Martin >> Short w James Earl Jones took my mind off my pain. I recommend it. >> >> Thanks for letting me share. Hope your holiday was great and the wind is >> always at your back! Also that your pain is minimal and energy is >> abounding! >> >> 18's, >> >> Susan Zimmerman >> Xoxoxo >> Praying for you. >> ------------------------------ >> On Monday, May 29, 2017 'Jeanie' via CMLHope <cmlhope@googlegroups.com> >> wrote: >> Hi Marty. >> Glad you are good. The watch sounds wonderful! >> Happy Memorial Day to all. >> Yes you are special and we are all a special >> Group of cml Warriors. >> I read this recently and it touched me. >> I don't even know if I will wake up tomorrow. >> I do know if my pain is managed I will sleep >> Well. >> I Need to keep myself in the here and now. >> So happiness to all and give us a line now and then. >> >> My Motto: >> Faith and Pills >> With Love >> 🐠18's >> Dx 1/2004 CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib 1/2015 >> Doctor Balducci Moffitt Cancer Center >> >> On Apr 21, 2017, at 11:15 AM, Marty Gartenberg <wa2...@gmail.com> wrote: >> >> Hi Susan, >> >> Very good on your necklace reminding you of your health and happiness of >> whatever you want it to remind you of. Yes, i think that would be a good >> idea and everyone could take part in. >> >> Now saying that, i would like you to hear what my choice is... I needed a >> new watch and when Shelly (my wife of 41 years) went on a cruise with me >> several weeks ago because it was right on our anniversary. >> >> We went to St Thomas and I bought her some very nice jewelry and she >> asked me what i also wanted. So not being a vain person i mentioned that it >> is okay i don't really need anything. >> >> But in my mind i did want a special watch that no one carried in St >> Thomas but i knew it was available in the U.S. It is a watch that looks >> like a bracelet with a black polished stainless band but you can't tell >> that it is a watch until you push a little button on it's side and then >> it's led's light up. Push once for the time, twice for date and month and >> three times for seconds. In fact i just purchased a second one in polished >> silver stainless. >> >> And do you know why i did it? Well they both remind my that time keeps >> going on and i am still alive every time that i push that little button on >> it's side. >> >> Now, am i unusual? Perhaps, but it is the thing that makes me really >> happy to know that is the reason that keeps me going... Unless of course >> the battery goes bad, and that is for what the second watch is for. 👋🖖 >> >> 18's, >> >> Marty >> >> On Fri, Apr 21, 2017 at 9:51 AM, 'Susan Zimmerman' via CMLHope < >> cmlhope@googlegroups.com> wrote: >> >>> I am still here, too. I'm on fb more than email. All is well, waiting >>> for my bcr/abl test results. >>> >>> Praying for all you wonderful people. Enjoy each day. I wear a bracelet >>> most days that has "Delighted" imprinted on it. That reminds me to be >>> delighted in God every day of my life. What is your chosen word for the >>> year that will remind you to be positive at all times? Would love to hear >>> the responses. >>> >>> Hang in there, >>> >>> Susan F. Zimmerman >>> ------------------------------ >>> On Friday, April 21, 2017 'LadyRx' via CMLHope <cmlhope@googlegroups.com> >>> wrote: >>> I'm still here, too! I was wondering where everyone went! Hopefully, >>> everyone is healthy and just taking a break! Greenie, in case you are >>> taking Ibuprofen (for arthritis and pain) you should let your doctor know. >>> He or she might want you to discontinue it. It drastically lowers kidney >>> function. >>> >>> Have a nice weekend, all! >>> >>> 18's >>> Lee >>> >>> On Apr 21, 2017, at 6:13 AM, cmlhope@googlegroups.com wrote: >>> >>> cmlhope@googlegroups.com >>> <https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/topics> >>> Google >>> Groups >>> <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> >>> <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> >>> Topic digest >>> View all topics >>> <https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/topics> >>> >>> - Fun thing to do >>> >>> <#m_-6343924699936982345_m_-7620013333424936935_m_7117329307231633877_group_thread_0> >>> - 8 Updates >>> >>> Fun thing to do >>> <http://groups.google.com/group/cmlhope/t/277496fc63bbdb52?utm_source=digest&utm_medium=email> >>> myvet...@aol.com: Apr 20 08:14AM -0400 >>> >>> Hi Group, is anyone home. Their seems to no posts anymore? I noticed >>> that >>> my name is off Zavie's list and he gave me number 48 and it's gone. Hope >>> all is well with everyone. >>> >>> greenie >>> >>> >>> In a message dated 2/7/2017 6:31:21 P.M. Eastern Standard Time, >>> pksch...@gmail.com writes: >>> >>> >>> For 32 years. I commuted two hours each day in the Toronto traffic >>> (exposure to benzine) and then sat in front of a computer terminal all >>> day long >>> (prolonged exposure to electromagnetic radiation). >>> Had I known then, what I know now, I would have chosen a healthier >>> occupation. >>> Also, in my younger years, I used leaded gasoline to wash the grease off >>> my hands after working on my beat up cars. >>> >>> >>> >>> >>> -- >>> -- >>> [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. >>> 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. >>> Marty Gartenberg <wa2...@gmail.com>: Apr 20 09:02AM -0400 >>> >>> Hi Greenie, >>> >>> I'm still here, in fact i am always here. I think that everyone is not >>> posting because of the holidays and are busy at this time of the year. >>> >>> So, how are you doing? I hope that you are doing well. Ever since my >>> accident i have been trying to recover but it is a very slow process. I >>> broke my neck in three places as well as my arm and shattered my elbow. >>> >>> I was in a coma for many weeks and when I finally got up to find i had >>> hole >>> in my neck connected to a respirator with my head in a sort of globe I >>> didn't know what happened to me. They told me that i had plates, screws, >>> nuts and bolts in both my neck and arm. Had to go to a nursing home and >>> had >>> months of therapy. >>> >>> But i am still still recovering. I gained a lot of being myself in these >>> past nine months. >>> >>> I'm walking I'm talking I'm eating again and I am off of Dialysis and >>> got a >>> kidney transplant and a prostate operation almost two and a half years >>> ago >>> and being able to pee is very good. And the best part is that I can still >>> drive my wife at night.😂 Even went on a cruise on March 26th, and our >>> 41st >>> anniversary was on March 28th while we were on the cruise. >>> >>> The way I look at things no matter what you go through, ain't life great! >>> You bet it is! Remember I'm still pushing those 18's. >>> >>> 18's, >>> >>> Marty >>> myvet...@aol.com: Apr 20 11:42AM -0400 >>> >>> Wow, I didn't know about the accident. Well, I'm glad things are going >>> better for you. I'm doing O. K. I'm at 41 on my GFR which is not great >>> but >>> the Doctor told me to keep drinking a lot of water and I've increased >>> that >>> also. I have blood work in Chicago on the first of June, see the Doctor, >>> etc. Check in with my late son's wife and kids and then catch the last >>> plane >>> out of Chicago to Fort Myers. It will be a long day but I'll be doing >>> just find. Creatinine is at 1.6 dropped from 2.02 so that's another >>> plus. >>> PLEASE be careful and take care of yourself. We all need you to solve >>> all of >>> our problems. >>> >>> Cheers, >>> >>> greenie >>> >>> >>> In a message dated 4/20/2017 9:02:51 A.M. Eastern Daylight Time, >>> wa2...@gmail.com writes: >>> >>> Hi Greenie, >>> >>> >>> I'm still here, in fact i am always here. I think that everyone is not >>> posting because of the holidays and are busy at this time of the year. >>> >>> >>> So, how are you doing? I hope that you are doing well. Ever since my >>> accident i have been trying to recover but it is a very slow process. I >>> broke my >>> neck in three places as well as my arm and shattered my elbow. >>> >>> >>> I was in a coma for many weeks and when I finally got up to find i had >>> hole in my neck connected to a respirator with my head in a sort of >>> globe I >>> didn't know what happened to me. They told me that i had plates, screws, >>> nuts >>> and bolts in both my neck and arm. Had to go to a nursing home and had >>> months of therapy. >>> >>> >>> But i am still still recovering. I gained a lot of being myself in these >>> past nine months. >>> >>> >>> I'm walking I'm talking I'm eating again and I am off of Dialysis and >>> got >>> a kidney transplant and a prostate operation almost two and a half years >>> ago >>> and being able to pee is very good. And the best part is that I can >>> still drive my wife at night.😂 Even went on a cruise on March 26th, and >>> our >>> 41st anniversary was on March 28th while we were on the cruise. >>> >>> >>> The way I look at things no matter what you go through, ain't life >>> great! >>> You bet it is! Remember I'm still pushing those 18's. >>> >>> >>> 18's, >>> >>> >>> Marty >>> >>> -- >>> -- >>> [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. >>> 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. >>> Marty Gartenberg <wa2...@gmail.com>: Apr 20 02:30PM -0400 >>> >>> Greenie, >>> >>> The one thing that you did mention was the fact that your kidney function >>> dropped. Hey I have a suggestion for you. If your not diabetic then start >>> drinking cranberry juice. It washes your kidneys out and it wouldn't >>> surprise me if your kidney function dropped even lower. But either way >>> you >>> should still drink more water which you already know about. >>> >>> 18's, >>> >>> Marty >>> >>> On Thu, Apr 20, 2017 at 11:42 AM, Myvety2k via CMLHope < >>> myvet...@aol.com: Apr 20 03:23PM -0400 >>> >>> Yes, Marty I am doing the cranberry juice. >>> >>> Thanks, >>> >>> greenie >>> >>> >>> In a message dated 4/20/2017 2:30:38 P.M. Eastern Daylight Time, >>> wa2...@gmail.com writes: >>> >>> >>> Greenie, >>> >>> >>> The one thing that you did mention was the fact that your kidney >>> function >>> dropped. Hey I have a suggestion for you. If your not diabetic then >>> start >>> drinking cranberry juice. It washes your kidneys out and it wouldn't >>> surprise >>> me if your kidney function dropped even lower. But either way you should >>> still drink more water which you already know about. >>> >>> >>> 18's, >>> >>> >>> Marty >>> >>> >>> On Thu, Apr 20, 2017 at 11:42 AM, Myvety2k via CMLHope >>> <cmlhope@googlegroups.com> wrote: >>> >>> >>> Wow, I didn't know about the accident. Well, I'm glad things are going >>> better for you. I'm doing O. K. I'm at 41 on my GFR which is not great >>> but >>> the Doctor told me to keep drinking a lot of water and I've increased >>> that >>> also. I have blood work in Chicago on the first of June, see the Doctor, >>> etc. Check in with my late son's wife and kids and then catch the last >>> plane >>> out of Chicago to Fort Myers. It will be a long day but I'll be doing >>> just find. Creatinine is at 1.6 dropped from 2.02 so that's another >>> plus. >>> PLEASE be careful and take care of yourself. We all need you to solve >>> all of >>> our problems. >>> >>> Cheers, >>> >>> greenie >>> >>> >>> >>> >>> In a message dated 4/20/2017 9:02:51 A.M. Eastern Daylight Time, >>> wa2...@gmail.com writes: >>> >>> >>> >>> >>> >>> Hi Greenie, >>> >>> >>> I'm still here, in fact i am always here. I think that everyone is not >>> posting because of the holidays and are busy at this time of the year. >>> >>> >>> So, how are you doing? I hope that you are doing well. Ever since my >>> accident i have been trying to recover but it is a very slow process. I >>> broke my >>> neck in three places as well as my arm and shattered my elbow. >>> >>> >>> I was in a coma for many weeks and when I finally got up to find i had >>> hole in my neck connected to a respirator with my head in a sort of >>> globe I >>> didn't know what happened to me. They told me that i had plates, screws, >>> nuts >>> and bolts in both my neck and arm. Had to go to a nursing home and had >>> months of therapy. >>> >>> >>> But i am still still recovering. I gained a lot of being myself in these >>> past nine months. >>> >>> >>> I'm walking I'm talking I'm eating again and I am off of Dialysis and >>> got >>> a kidney transplant and a prostate operation almost two and a half years >>> ago and being able to pee is very good. And the best part is that I can >>> still drive my wife at night.😂 Even went on a cruise on March 26th, and >>> our >>> 41st anniversary was on March 28th while we were on the cruise. >>> >>> >>> The way I look at things no matter what you go through, ain't life >>> great! >>> You bet it is! Remember I'm still pushing those 18's. >>> >>> >>> 18's, >>> >>> >>> Marty >>> >>> >>> >>> -- >>> >>> -- >>> [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. >>> To post to this group, send email to CMLHope@googlegroups.com >>> To unsubscribe from this group, send email to >>> CMLHope-unsubscribe@CMLHope-unsubscr >>> For more options, visit this group at >>> _http://groups.google.com/http://groups_ (http://groups.google.com/grou >>> p/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+unsubscribe@cmlhope+unsubscr. >>> For more options, visit _https://groups.google.com/d/https:_ >>> (https://groups.google.com/d/optout) . >>> >>> >>> >>> >>> >>> >>> >>> -- >>> -- >>> [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. >>> To post to this group, send email to CMLHope@googlegroups.com >>> To unsubscribe from this group, send email to >>> CMLHope-unsubscribe@CMLHope-unsubscr >>> For more options, visit this group at >>> _http://groups.google.com/http://groups_ (http://groups.google.com/grou >>> p/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+unsubscribe@cmlhope+unsubscr. >>> For more options, visit _https://groups.google.com/d/https:_ >>> (https://groups.google.com/d/optout) . >>> >>> >>> >>> >>> >>> >>> -- >>> -- >>> [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. >>> 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. >>> Marty Gartenberg <wa2...@gmail.com>: Apr 20 03:38PM -0400 >>> >>> GREAT! >>> >>> Marty >>> >>> 18's, >>> >>> On Thu, Apr 20, 2017 at 3:23 PM, Myvety2k via CMLHope < >>> Joyce Mesnarich <joy...@htc.net>: Apr 20 07:00PM -0500 >>> >>> I have been missing hearing from members of the group also. Marty, I am >>> so happy to hear that you and your sweetie were able to take a cruise and >>> celebrate your anniversary. Greenie, who knows what happened to your name >>> on Zavie’s list. Strange things happen in cyberspace. Hope all is well with >>> your daughter-in-law and grandchildren. My husband (the CML patient) and I >>> are ok. We are both feeling the progression of age hitting us. But we do >>> what we can. We have welcomed two great-grandchildren to the family in the >>> last year. Another one was born 2 weeks ago and we are expecting yet >>> another next month. We are so fortunate that our grandchildren keep us in >>> tough with these new family members by phone, texts and pictures and >>> Facebook. I has been such fun to see the older 2 boys in their first year >>> of life, even though we are miles apart. Social media does have some use >>> even in senior citizens life. Hope everyone is doing well. Bobby, how are >>> you? Jeannie, thinking of you, too. >>> Joyce in IL >>> >>> >>> Marty Gartenberg <wa2...@gmail.com>: Apr 20 10:04PM -0400 >>> >>> Hi Joyce, >>> >>> Glad to hear from you again. Glad to hear about your family. I guess that >>> is the string that holds all of you together. >>> >>> You spoke of getting older and I hear you BUT as we get older we get >>> wiser. >>> Anyway that's the way i look at it. >>> >>> Here is a picture I just found of myself about thirteen years ago, and I >>> guess those were the good old days. >>> >>> 18's >>> >>> Marty >>> >>> >>> >>> Back to top >>> <#m_-6343924699936982345_m_-7620013333424936935_m_7117329307231633877_digest_top> >>> You received this digest because you're subscribed to updates for this >>> group. You can change your settings on the group membership page >>> <https://groups.google.com/forum/?utm_source=digest&utm_medium=email#!forum/cmlhope/join> >>> . >>> To unsubscribe from this group and stop receiving emails from it send an >>> email to cmlhope+unsubscr...@googlegroups.com. >>> >>> -- >>> -- >>> [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. >>> 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