Re: [CMLHope] Re: posting my blood panel results today
Hi Susan, my daughter's name is Susan. I live in South Fort Myers, minutes from the Golf, it's a 55 and older community . I've been going to Northwestern University School of Medicine since 1999. It's just 2 blocks south of the John Hancock building. They call it the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. 675 North St. Clair Street Suite 21 which is the 21st floor. Chicago, IL. 60611. You can call 312-695-0990. They have a team of Doctors that you would work with. My Doctors name is Jessica K. Altman MD., theirs Olga Frankfurt, MD,MS. theirs Dr. Leon C. Platanias, MD, PhD, just to name a few. How you would get in their I don't know unless you just call, or have your Doctor refer you to Northwestern. I know one thing they are good and the area is very safe, easy parking right across the street. Parking garage 10 stories high. I think they charge $10.00 for 7 hours and you get your receipt stamped at the desk before you leave. Their pretty tight lipped and won't give out any information about other patients. Which is O. K. by me. And they have a great cafeteria to eat your lunch. It's a big place, takes up a couple city blocks. You should check it out and it's and easy drive. If you want you can email me and give me your phone number and I'll call you and we can talk. _myvety2k@aol.com_ (mailto:myvet...@aol.com) . Hope this helps, greenie In a message dated 5/18/2013 8:58:57 A.M. Eastern Daylight Time, rszim0...@aol.com writes: Hi Greenie, I am from Indiana also, and looking for a good doctor in the Chicago area that knows a lot about CML. Do you suggest someone at Northwestern or do you know anyone at University of Chicago? Dr. Druker's nurse told my friend of a name, Dr. Larsen who is at U. of Chicago if he has not retired or moved. My latest FISH test showed 17.74 number, which gives me some cause for alarm. Anyone have any opinion about that? I'm the one who hasn't had any medicine for six years and 2 months now. I live in the South Bend/Granger area, and do not have faith in any of these local doctors. Where do you live, Greenie? Thanks and 18's, Susan F. Zimmerman "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -Original Message- From: Myvety2k To: cmlhope Sent: Thu, May 16, 2013 6:32 am Subject: Re: [CMLHope] Re: posting my blood panel results today Hi Beth, when I first started STI571 at Northwestern back in Jan. of 2000 in a study sponsored by Novartis, Northwestern not Novartis told me that as long as I stay alive they would supply me with the drug. This new study is sponsored by Northwestern, I didn't mean to get Novartis involved with my email I think they wanted someone that was of my age, 73 that's been on Gleevec for over 13 years. I don't know anything about the 2 other people involved in this study. I asked one time about the 7 other people that were in the first study back in 2000 and they said they can't give out any information about them. Seven of them were from Chicago land and I was the only one from Indiana. I don't even know if any of them are still in any study or alive. greenie In a message dated 5/15/2013 8:03:53 P.M. Eastern Daylight Time, _bkbarney@aol.com_ (mailto:bkbar...@aol.com) writes: OK. I just got confused, You said you were in a new study with two others. Always looking at options! Thanks. Feel good!! Beth -Original Message- From: Myvety2k <_Myvety2k@aol.com_ (mailto:myvet...@aol.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Wed, May 15, 2013 6:33 pm Subject: Re: [CMLHope] Re: posting my blood panel results today Hi Beth, I'm not taking anything put I am going to check into it. greenie In a message dated 5/15/2013 6:11:22 P.M. Eastern Daylight Time, _bkbarney@aol.com_ (mailto:bkbar...@aol.com) writes: Greenie, are you on ponatinib? Let me know. Beth -Original Message- From: Myvety2k <_Myvety2k@aol.com_ (mailto:myvet...@aol.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Tue, May 14, 2013 6:36 pm Subject: Re: [CMLHope] Re: posting my blood panel results today Hi Beth, Northwestern University and it's supported by Novartis. Greenie In a message dated 5/14/2013 6:15:54 P.M. Eastern Daylight Time, _bkbarney@aol.com_ (mailto:bkbar...@aol.com) writes: GReenie, glad your cml is doing so well. What new study are you in? Beth -Original Message- From: Myvety2k <_Myvety2k@aol.com_ (mailto:myvet...@aol.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Tue, May 14, 2013 3:56 pm Subject: Re: [CMLHope] Re: posting my blood panel results today HI Suzieq, I went to Chicago on May 1st to see
RE: [CMLHope] Re: posting my blood panel results today
Hi Susan- My suggestion is to get in touch with one of the two Facilitators for the Chicago CML Connection group that's a service of the National CML Society. Either Lisa Lewandowski or Jen Schwarz, both CML patients, would be happy to help you, just as they help others. You can find more information, and their email addresses here. http://www.nationalcmlsociety.org/what-we-do/cml-connection/illinois-cml-res ources Here is Dr. Larsen's contact information: http://www.uchospitals.edu/physicians/richard-larson.html In Indianapolis, I consider Dr. Luke Akard: http://ibmtindy.com/wordpress/luke-akard/ Given your FISH results I would definitely see a true CML specialist as soon as possible. Wishing the best for you, Pat Elliott Phoenix, Arizona CML Patient and Advocate. From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Susan Zimmerman Sent: Saturday, May 18, 2013 5:59 AM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] Re: posting my blood panel results today Hi Greenie, I am from Indiana also, and looking for a good doctor in the Chicago area that knows a lot about CML. Do you suggest someone at Northwestern or do you know anyone at University of Chicago? Dr. Druker's nurse told my friend of a name, Dr. Larsen who is at U. of Chicago if he has not retired or moved. My latest FISH test showed 17.74 number, which gives me some cause for alarm. Anyone have any opinion about that? I'm the one who hasn't had any medicine for six years and 2 months now. I live in the South Bend/Granger area, and do not have faith in any of these local doctors. Where do you live, Greenie? Thanks and 18's, Susan F. Zimmerman "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -- -- [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/groups/opt_out.
Re: [CMLHope] posting my blood panel results today
I just read all the background on Greenie and apologize for asking...see he lives in Fort Myers. Still interested in doc's names in Chicago area and even Indianapolis if you know of anyone. Thanks, Susan F. Zimmerman "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -Original Message- From: Myvety2k To: cmlhope Sent: Wed, May 15, 2013 7:31 pm Subject: Re: [CMLHope] posting my blood panel results today Hi Jeanie, if you don't mine my asking where in Florida to you live? We just moved into a 55 and older community a few months ago and we just love here. 5 min. from the gulf, Grace looks for shells while I fish from shore or I take out my kayak. greenie In a message dated 5/15/2013 6:48:45 P.M. Eastern Daylight Time, icandoall...@aol.com writes: That is great Greenie. I am a Florida Cracker and am a 6th generation Floridian. I can't even take it when it gets cold here hehe. You are a lucky; I had to copay 2,500 for my gleevec for a while until I got some help with it. Way to much money, but it saved my life. Blessings, Jeanie<3 In a message dated 5/14/2013 7:48:40 P.M. Eastern Daylight Time, myvet...@aol.com writes: Hi Jeanie, I was born in Chicago Southshore Hosp. my family moved to Hobart, IN. 2 years later and I lived in the area most of my life except 4 years in Springfield, MO. Moved back to Porter, IN. two miles from Lake Michigan but the winter was hard on me so we moved again to South Fort Myers, FL. a little over 2 years ago. My much, much, older brother lives in Naples, FL. I miss my son and his family but I just can't take the cold weather. I was in a study at Northwestern back in 2000 with 200 people nation way before Gleevec was approved by the FDA. Their was 8 of us I was the only one from Indiana and the others were from the Chicago area. So I was a very lucky person to get picked back then. Gleevec was called STI571 back then, It saved my life. You take care of yourself, Greenie In a message dated 5/14/2013 6:37:06 P.M. Eastern Daylight Time, icandoall...@aol.com writes: Hi Greenie and thanks so much for sharing. I have had the counts go up and down just like yours. I like yogurt and honey; need to cut down on the honey hehe. I like the raw honey on toast and in yogurt. I don't buy the sweet kind of yogurt; just plain. I eat healthy and walk daily; just easy walking nothing hard. I love to go on cruises and go about 3 times a year thanks to my daughters. Blessings, Jeanie<3 In a message dated 5/14/2013 9:12:55 A.M. Eastern Daylight Time, myvet...@aol.com writes: Hi Jeanie, your test results have me beat by a mile and I started Gleevec on Jan. 9th 2000 at 300 mg. each day. Here are some of my results. WBC 5.9 RBC 3.71 L Hemoglobin 12.5 L Hematocrit 37.3 L MCV 33.7 MCHC 33.5 Platelets 176 RDW 13.5 Absolute Neutrophils 3.4 Absolute Lymphocytes 1.8 Glucose 95 Blood Urea Nitrogen 18 Calcium 8.7 Protein Total 6.9 Albumin 4.2 ALT 31 AST 39 H this the 3rd time that it's been this high in over 13 years. It was 51 a few months ago but the Doctor told me not to worry about it. Sodium 140 Chloride 105 Potassium 3.9 Creatinine 1.44 H it's been between 1.1 to 1.4 going back to 1997 before I found out I had CML. I found out that I had CML two weeks before Christmas 1998. I would like to get my RBC higher but my Doctor keeps telling me to just leave it be. Like they say if it's not broken don't try to fix it. They was a time that when I first started taking Gleevec my WBC dropped to 2.6 and told me not to worry. Dam it's hard not to worry when things like this happen. They see these results on other people but we don't so it's hard to compare what is good and what's back. Anyway your tests look good so keep what ever your doing and don't change anything. Take Care, Greenie In a message dated 5/14/2013 8:11:40 A.M. Eastern Daylight Time, icandoall...@aol.com writes: WBC 6.2 range 3.8-10.8 thousand/ul RBC 4.33 range 3.80-5.10 milliion/ul Hemoglobin 13.5 range 11.7-15.5 g/dl Hematocrit 41.4 range 35.0-45.0% MCV 95.5 range 80.0-100.0 fl MCH 31.2 range 27.0-33.0 pg MCHC 32.c range 32.0-36.0 g
Re: [CMLHope] Re: posting my blood panel results today
Hi Greenie, I am from Indiana also, and looking for a good doctor in the Chicago area that knows a lot about CML. Do you suggest someone at Northwestern or do you know anyone at University of Chicago? Dr. Druker's nurse told my friend of a name, Dr. Larsen who is at U. of Chicago if he has not retired or moved. My latest FISH test showed 17.74 number, which gives me some cause for alarm. Anyone have any opinion about that? I'm the one who hasn't had any medicine for six years and 2 months now. I live in the South Bend/Granger area, and do not have faith in any of these local doctors. Where do you live, Greenie? Thanks and 18's, Susan F. Zimmerman "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -Original Message- From: Myvety2k To: cmlhope Sent: Thu, May 16, 2013 6:32 am Subject: Re: [CMLHope] Re: posting my blood panel results today Hi Beth, when I first started STI571 at Northwestern back in Jan. of 2000 in a study sponsored by Novartis, Northwestern not Novartis told me that as long as I stay alive they would supply me with the drug. This new study is sponsored by Northwestern, I didn't mean to get Novartis involved with my email I think they wanted someone that was of my age, 73 that's been on Gleevec for over 13 years. I don't know anything about the 2 other people involved in this study. I asked one time about the 7 other people that were in the first study back in 2000 and they said they can't give out any information about them. Seven of them were from Chicago land and I was the only one from Indiana. I don't even know if any of them are still in any study or alive. greenie In a message dated 5/15/2013 8:03:53 P.M. Eastern Daylight Time, bkbar...@aol.com writes: OK. I just got confused, You said you were in a new study with two others. Always looking at options! Thanks. Feel good!! Beth -Original Message- From: Myvety2k To: cmlhope Sent: Wed, May 15, 2013 6:33 pm Subject: Re: [CMLHope] Re: posting my blood panel results today Hi Beth, I'm not taking anything put I am going to check into it. greenie In a message dated 5/15/2013 6:11:22 P.M. Eastern Daylight Time, bkbar...@aol.com writes: Greenie, are you on ponatinib? Let me know. Beth -Original Message- From: Myvety2k To: cmlhope Sent: Tue, May 14, 2013 6:36 pm Subject: Re: [CMLHope] Re: posting my blood panel results today Hi Beth, Northwestern University and it's supported by Novartis. Greenie In a message dated 5/14/2013 6:15:54 P.M. Eastern Daylight Time, bkbar...@aol.com writes: GReenie, glad your cml is doing so well. What new study are you in? Beth -Original Message- From: Myvety2k To: cmlhope Sent: Tue, May 14, 2013 3:56 pm Subject: Re: [CMLHope] Re: posting my blood panel results today HI Suzieq, I went to Chicago on May 1st to see my Doctor, get my blood work and pickup my med's. My son and is wife and my 7 month old grandson picked me up at Midway. Doctor told me that I need not come back for (1) year only to pickup same. She said if I want to I could see a cancer Doctor here in Fort Myers once a year that way I would be getting my month work every 6 months instead of every 3 months. It's up to me. So that's good news and they put me into another study with 2 other people plus some in other countries. Good to here your doing O. K. Greenie In a message dated 5/14/2013 4:43:53 P.M. Eastern Daylight Time, sheila.a.wat...@gmail.com writes: Jeanie: So glad to hear these test results. Just awesome. I remember your past struggles. I go tomorrow for my sixth month Doctor visit. Am curious to see if mine are still stable being on 200mgs instead of the 400. Will be hoping for these good blood counts as yours. :) God Bless, Suzieq -- -- [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,
Re: [CMLHope] Re: Arthritis ?
Hi Suzieq, I forgot to mention that anything that you eat or drink that contains purines can cause the gout. There are several that are very high content of purines. Sea food like crustaceans but usually not fish, Wine, and especially beer. Green leafy vegetables like spinich, then Mushrooms. Red meat, lunch meats. All of these can bring on a gout attack which will usually start while your sleeping. Then suddenly you awake about two or three in the morning with a terrible pain, usually in the lower extremities mainly at the side of your big toe but they could be anyware in any joint. At that point you will need to take a steroid like prednosone which is also bad for your kidneys, and I should know about that. You may want to go on line and find out which foods or drinks contain purines and avoid them. A good place to start is here: http://www.livestrong.com/article/328955-food-and-drink-high-in-purines/ Now mind you, just because the list of these foods and drinks may be over-whelming that doesn't mean that you must never eat them again. If you do have the gout then you will learn what and how much of that what you can or can not eat or drink. So, if it should end up as the gout there are treatments for it besides steroids, mainly Allopurinal once a day. It comes in either 300 mg tablets or 100 mg tablets. Your doctor will probably start you on 300 mg and see what if anything happens. If it does help (providing that you actually have the gout) he or she will probably reduce the dose to 100 mg and again see what happens. There is also another drug called Indocine that may help if you already experiencing a gout attack rather then the steroids. Just so you know if you take a steroid the pain will be relived within 20 minutes, but steroids sometimes can cause other problems. In a way, I do hope that it is the gout rather then any other type of arthritis because you will only have to be on Allopurinal rather then some other strong drugs, and you need to speak with your doctor/s about any other interactions with your TKI (Gleevec, or any other TKI) with any of these drugs I have already mentioned. By the way, I have never been on any TKI but rather had a bone marrow transplant more then 23 years ago, but I used to have the gout attacks very bad, and ever since I have been on Allopurinal (100 mg) have only had one or two very mild gout attacks. This information that I have written about is what happened to me. Since we are all different and use different medications what may be either good or bad for me may not be good or bad for you. You should always sit down with your doctor/s and have an informed discussion with them. 18,s Marty On Fri, May 17, 2013 at 6:28 PM, Suzieq wrote: > Marty: > I found a bottle of Cherry Concentrate Juice, only have to mix two > tablespoons with some water or whatever I want to drink. Course, it cost > right at $18 for about a quart bottle, but will last a good long while. > This grocery store is the only one I found that carries this juice. And, I > did read labels and saw where most juices are flavored Apple juice or grape > juice. You think when it says 100% Juice, that's what you are getting > until you read the label and find out just what sort of juices are mixed > together. LOL!!! Plus, bought some dried Cherries & eat some of those as > well as I bought a bottle of Cherry Wine. So, I think I did pretty good. > :) There aren't any nice fresh Cherries available here yet, I looked. > Normally, they cost as arm & leg when they do first show up in the > produce isle. :) I am going to discuss this matter of Gout with my > Hem./Onc. when I see her at the end of the month. > > Keep Looking Up, Suzieq > > >> -- > -- > [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/groups/opt_out. > > > -- -- [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 unsubscri
