Amen! Specialist who deal with CML and know the ins and outs of the disease and how to treat it are the way to go! I traveled to Oregon to see Dr. Druker and it helps me immensely. I Have found it's not a lack of concern of general oncologist, but a lack of experience with CML or the new drugs, or how they might be administered..for each unique person and theri circumstances. Sounds good....get off the a---..and get cooking. Help is out there.....and we will cheer you on.....I too need a swift kick in the pants some times to inspire me to further action. It's not an easy road..and sometimes we can be weary travelers...so we set and rest for atime..and then do something to inspire to get up and do what we can..... we are here for you! Hang in there MIllie..I love that you are busy doing your crocheting....love ...Beth
-----Original Message----- From: Susan Zimmerman <rszim0...@aol.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Fri, Jul 19, 2013 9:52 am Subject: Re: [CMLHope] Re: Hi Thanks so much, Beth!!! I'm getting on the phone this afternoon come hell or high water! Somebody that holds great weight with me told me to get off my a__ and get moving toward a specialist, so I guess I'll do it! 18's Susan -----Original Message----- From: bkbarney <bkbar...@aol.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Fri, Jul 19, 2013 11:18 am Subject: Re: [CMLHope] Re: Hi Dear Susan, So sorry you are struggling. But I am so glad you are listening to the warning sides of your body and paying attention. So often people override their own knowing or their doctors won't listen...You stay strong and be a good advocate for yourself. I am on sprycel at a lower dose now....titrating down to whatever will hold my numbers, and give me the least complicatons..The good news about most of the newer drugs, like sprycel and ponatinib is they are so much more potent than gleevec and tasigna are, so less drug, can sometimes do the job well for some folks. I was on bosutinib, unfortunately it's the only drug that did nothing for me, I had bad side effects on it, and when I found out the cancer marched right through it for me, I stopped immediately and went back on sprycel, which at a low dose, works for me. A high dose is not an option for many. I have not tried ponatinib, but have heard good things from my oncologist that the people she is treating with it, on lowered doses, are in remission and are not suffering severe side effects. It does have the liver pancreas profile of possible side effects there, but like tasigna, it's just a personal thing how each drug affects us. I would encourage tou to work with your doc and come up with a plan to try one of the newer drugs and see how it goes. I have heard about DR PInella's idea about a vaccine. It is not yet an option, but you can read about the latest research at work for us on the LLS site, as well as Moffit's....as my friend is down there healing from a bone marrow transplant, she is in the clinic every day..I will ask her to look into Dr PInella's research and see where it stands currently. I will let you know what I find out! Take good care Susan, stay positive, this is another pot hole in the road, but you can and will figure out what the next best step is...it may take time to tweak your meds and get the numbers back in line, but it will happen...stay protective and proactive...thinking of you and all my fellow warriors...hope you all have a great weekend ahead~ Beth -----Original Message----- From: Susan Zimmerman <rszim0...@aol.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Fri, Jul 19, 2013 6:48 am Subject: Re: [CMLHope] Re: Hi Hello all, Thanks so much for the inspiration, Millie, Marty, Richard and Beth! You guys are fantastic and I am suddenly most aware of your help and encouragement. Marcie has also helped amazingly with that! During the six years while not on gleevec against my doc's orders, I skipped over most cml google group posts as I was not dwelling on the illness, and I usually get about 200 e-mails a day. So I am not up on the latest thing. Thanks Pat Elliott for helping with direction on docs in certain cities. You are always johnny-on-the-spot and fulfilling your role soooo very well! I wish you all the very best. Now my numbers from the bcr/abl test were 23.8.....horribly high, I know. However, after 15 days on lightest dose of tasigna, my right eye stopped moving with the left for a short time, giving me a warning signal about another stroke. Now I must find a specialist somewhere that will help me use some (maybe new?) medicine to bring those numbers down. Is anyone here on bosutinib or ponatinib??? Very interested to converse with you, if you are! Has anyone heard about the vaccination process that Moffitt in Tampa had told me years ago that was being worked on? They (Dr. Javier Pinilla) hoped six years ago that would lead to a cure. With all your encouragement and determination to enjoy every day, I am with ya! You all are absolutely fantastic as you each do your best to leave a positive word. I am hoping and praying I don't go into blast phase before something good happens. G_d is definitely in control, so no fear here! Praying for you all. 18's, Susan F. Zimmerman -----Original Message----- From: Marty Gartenberg <wa2...@gmail.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Fri, Jul 19, 2013 5:29 am Subject: Re: [CMLHope] Re: Hi Hi Millie, You want to know something? No matter what you are and have been going through your still here and kicking. You Millie are just like that pink ever-ready bunny. You just keep going and going. You ended your last statement with That's what we all do, so nothing new......!!!!! Well Millie, you your correct, that's what we all do, but there is something new. Another day! 18's Marty On Thu, Jul 18, 2013 at 11:11 PM, Richard H <richard1huff...@comcast.net> wrote: Sorry to hear about your new health challenge. I am adding you to my special list for prayers. I wll be praying for this to be a bump in the road and not a mountain to climb. Richard H. On Tuesday, July 16, 2013 9:59:14 AM UTC-5, millie wrote: Hello to everyone. I didn't get on here yesterday as I was sick to my stomach (from what I don't know), and still have it a little today, but not as bad. I did see my Oncologist and he was able to get the results of my biopsy. Well, it is cirrhosis of the liver and so we have to deal with it. Since I've been on Tasigna for 6 years he is confused as this would normally happen during the first year on the drug, so we have to find out how to deal with it. He's going to call the people that make the drug and see what they can find out. Meanwhile, I'm off of the Tasigna until further notice. He did blood work, so he'll call me with the results when he gets them. He is also going to put me on the list for a liver transplant. I didn't think they would consider that at my age, and with my other health issues, but he says that they will. He works for Geisinger Hospital, which is huge in this area and they do lots of advanced things, so we shall see. I went to their new cancer clinic in Pottsville, and it was nice and brand new, so it was a pleasant experience. Your prayers, etc. will be appreciated. I just have to deal with what is. That's what we all do, so nothing new......!!!!! Talk to you soon. Many hugs, Millie -- -- [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. 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