New Member
Posted 26 January 2010 - 07:22 PM
Hi Susan,
I had to let you know....
Today we found out that Cancer Center of America excepted Charlie's insurance and we are going to phili next Wed. for a 3 day evaluation!
I was so happy I was hugging everyone at work like I won the lottery..lolololol
Finally we are getting somewhere.....Charlie and I have walked around lost for almost 3 months now with Charlie so sick and no answers.
As Charlie would say " It was a good day today"
dawn
New Member
Posted 26 January 2010 - 07:23 PM
Hi Susan,
I had to let you know....
Today we found out that Cancer Center of America excepted Charlie's insurance and we are going to phili next Wed. for a 3 day evaluation!
I was so happy I was hugging everyone at work like I won the lottery..lolololol
Finally we are getting somewhere.....Charlie and I have walked around lost for almost 3 months now with Charlie so sick and no answers.
As Charlie would say " It was a good day today"
dawn
New Member
Posted 26 January 2010 - 07:40 PM
Dawn,
Thank you so much; that is a big help. sandi
Advanced Member
Posted 26 January 2010 - 07:44 PM
Hi Dawn: I am so glad you found someone for Charlie. I had mentioned Dr. Goldberg, and I have heard nothing but good about him. My thing was that he was rushing me into getting the BMT. In all fairness to him, the Gleevec trial was not available for me at that time. I just remembered a girl who went to see Dr. Goldberg after Gleevec was approved. He told her to start with Gleevec before thinking about a BMT.
To make you and Charlie feel more positive is the fact that a lot of us had no real choices when we were diagnosed. All these new treatments were not here. I was diagnosed in 1998, and it was all just starting. I hope this doctor that you see can just get Charlie situated with proper dosing on medication, and put BMT on hold for awhile.
I will be looking for your latest post after you and Charlie get back from Phila. The other thing is for you to travel to Philadelphia from Monmouth County is no big deal. I will keep Charlie in my prayers. I know exactly how he is feeling, and you as his wife and caregiver. My husband has been with me through it all, and sometimes I felt more sorry for him than myself.
Susan
Advanced Member
Posted 26 January 2010 - 07:44 PM
Hi Dawn: I am so glad you found someone for Charlie. I had mentioned Dr. Goldberg, and I have heard nothing but good about him. My thing was that he was rushing me into getting the BMT. In all fairness to him, the Gleevec trial was not available for me at that time. I just remembered a girl who went to see Dr. Goldberg after Gleevec was approved. He told her to start with Gleevec before thinking about a BMT.
To make you and Charlie feel more positive is the fact that a lot of us had no real choices when we were diagnosed. All these new treatments were not here. I was diagnosed in 1998, and it was all just starting. I hope this doctor that you see can just get Charlie situated with proper dosing on medication, and put BMT on hold for awhile.
I will be looking for your latest post after you and Charlie get back from Phila. The other thing is for you to travel to Philadelphia from Monmouth County is no big deal. I will keep Charlie in my prayers. I know exactly how he is feeling, and you as his wife and caregiver. My husband has been with me through it all, and sometimes I felt m
Susan
New Member
Posted 26 January 2010 - 07:47 PM
Dawn,
Susan is soooo right; Charlie needs to get the right treatment NOW. You are good to question. Good luck, sandi
New Member
Posted 26 January 2010 - 07:52 PM
RTC,
Some good info here; I currently go to Fox Chase--they have been okay. I considered going to penn but so many people are not impressed as you are with them--just a number and do not care--who wants that. You would think that living in a huge city area, we would get excellent care. So far Fox Chase has been okay--they are in contact with my local onc and they work together but still not sure they are on the right mark with me. I want to see a cml specialist because my pcr's tests have been coming back all over the place. thanks for the info, sandi
Advanced Member
Posted 27 January 2010 - 08:08 AM
Who is "Liz" and why did you edit my post?
Advanced Member
Posted 27 January 2010 - 08:38 AM
Sandi:
If there was a CML specialist in this area, and by that I mean from...say Wilmington up to just this side of NYC, out to Harrisburg I guess, we'd be there. Fact is, there isn't. If you find one, good luck with it and I hope you do and it works out. We have added a few days to a long ago planned croos country trek to get to Oregon to see Druker this May because there really just isn't anyone. CML is, for the most part, relegated to what the urban teaching centers call "the community". That is, the ordinary and sundry docs out there in the strip malls will take care of the CML'rs, we'll stick to the high profile transplant stuff, the stuff of teevee commercials.
It's pretty darn sad, but that is how it is. And this will probably be edited too, which is just as sad. You can only share experience with cancer, CANCER fergawdsakes, if it doesn't offend some corporate sponsor.
Truly I think of you all every day, and have to wish you all even more luck with this. It is my pre-editing opinion that not only are you NOT being done a service here, you are actually being done a dis-service. If I could spare one CML'r their time and very precious energy needed to go to yet one more frustrating place for "care" I think I have done something. The folks running this thing would not agree, and that's fine, it is their right. They just should change the name of this to make it clear that it is only certain experiences that can be shared, and when they edit something they should at least have the decency to tell the writer why.
rct
Advanced Member
Posted 27 January 2010 - 11:36 AM
RCT,
The L&LS folks obviously try to make sure this site works well and complies with their requirements, which are generally reasonable. Liz is someone who is helpful in this regard, and she has served us by eliminating spammers, advertisers, and such. My interfaces with the L&LS folks almost always result in an attempt to improve what I complain about, or at least an explanation. I recently complained about the search engine here, and it was fixed quickly. I am sure that you just inadvertantly tripped over some hot button issue, since your postings are always helpful. But your avatar is still creepy, with that floating blue head thing -- too bad Liz can't edit that. But if you have a specific input for them, or would like to review why an edit occurred, you can email them at Community@lls.org
Hey Liz -- thank you from all of us.
Advanced Member
Posted 27 January 2010 - 01:12 PM
Well Trey, their requirements are that nobody post anything slanderous. And they determine what is and isn't slanderous.
It's ok I guess, but it isn't fair at all to people struggling the way these folks are struggling. To me, it just isn't right.
But then, if nobody puts up for a forum, this wouldn't be here and we wouldn't even be having THIS discussion, so in the end I'm ok with it. I may very well have crossed a very hard to see line, and for that I am truly and sincerely apologetic. It's pretty hard to talk about CML without getting pretty worked up about it. Not just me, that is.
And thank you Liz whoever you are, you're work is not just editing posts, of this I am sure.
Nobody but nobody can edit my Zardoz avatar. Been using it for years, all kindsa forums. Buck up Chief, it won't bite you. It would probably help if you popped some corn, poured some coffee, and watched the movie. Really. If you think my avatar is creepy...
rct
New Member
Posted 27 January 2010 - 05:50 PM
RCT,
Well that is pretty sad; that I live in the 6th(I think) largest city in the U.S. and there are virtually NO cml experts within several hours drive of here--not on the east coast of the U.S. I am currently dealing with the local onc--in the suburbs with a second opinion at Fox Chase and I still feel like I am getting little answers. I don't know what to do. I guess, I need to do more research to find a cml specialist and make the long trip somewhere in this country for the help I need. I am tired..........and confused...............who has energy for a long trip.................not much else I can do if I want answers. Thank you for you info, sandi
New Member
Posted 27 January 2010 - 07:08 PM
Hi Susan
Well Charlie went to the doctors today, phili suggested we keep this appointment since we will not be there till next week. What a waste of money.
He kept Charlie off the gleevec for another week because he still seems to some problems. Less fatique since he has been off of it for a week already. His counts aren't to much different but still forgetful aches and pains etc.He can only work a 1/2 day before going home and going to bed. When i mentioned he is still having continual headaches, all of sudden he gets dizzy or has blurred vision out of nowhere so bad he has to sit down and then he gets better and this has been going on before the gleevec, he told me to take him to the eye doctor and get his eyes checked....ahhhhhh!!!
It is scarey that people trust these doctors for their lives.....it is not like they are going there to be treated for a common cold.
I am so glad we are going to phili next week...it can not come soon enough!
dawn
Advanced Member
Posted 27 January 2010 - 07:47 PM
As I've said "Zardoz" is one of my favorite cult flicks. I never pass up the opportunity to watch a very young Sean Connery! Perhaps if you used a photo of his character as your avatar....
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
New Member
Posted 27 January 2010 - 08:09 PM
Dawn,
Could you let me know how the visit goes? I am seeing a doctor in northern PA who completed a residency at Fox, however, we will be moving most likely to the Philadelphia area over the summer and I want to know where to go when that time comes. I was just diagnosed two weeks ago and started Gleevec today. Still in the initial shock period I think!
New Member
Posted 27 January 2010 - 08:27 PM
Sandi-You may want to Try Johns Hopkins in Baltimore. They do a lot of CML research. Dr. B. Douglas Smith comes to mind but they have a few.
New Member
Posted 27 January 2010 - 08:30 PM
Sandi-You may want to try Johns Hopkins in Baltimore. It really is not too far. They have a few Docs and do a lot of CML research. Dr. B. Douglas Smith comes to mind.
Advanced Member
Posted 27 January 2010 - 10:02 PM
Hi Gayle: All this talk about getting a expert CML doctor probably does scare you, especially only being 2 weeks into all of this. Do not get yourself upset.
When I was first diagnosed. I saw a local doctor who I worked for. I knew his expertise as I was with him for 12 years at my diagnosis. As good as he was, he sent me to get second and third opinions. Once you go through the search, and maybe a little bit of travel you will get on the right form of treatment.
I really believe that once you understand your disease and how it works, you will know who you can trust for your care.
Now that my Oncologist retired,they just turned me over to the new doctor who is taking over his practice. I am not impressed, and I am moving on.
I will be seeing a doctor who has good credentials in treatment of CML, and being I am now PCRU I feel that I can see this local doctor at the present time.
If you need someone to talk to you can send me a e-mail suzzienovember@yahoo.com
Susan 61
Advanced Member
Posted 27 January 2010 - 10:07 PM
Hi Dawn: I know how frustrated you are. Go see this doctor in Philadelphia, and if you have to go see a few more than do it. Once you get established with someone that you feel is giving Charlie the proper care, the rest will fall into place. As you learn more and more about CML, it helps also.
Have a good trip, and don't anticipate anything that you cannot handle. You will most likely feel a lot of relief as you travel back home. I know how I felt when I went into NY and got some real answers, and proper treatment.
Susan
Advanced Member
Posted 28 January 2010 - 11:20 AM
The sadness you speak of is an unfortunate result of developing Wonder Drugs That Work Wonders. There is no need for, and no money in, CML specialists anymore, and by anymore I mean what? Ten years? The community can dispense pills and order blood tests, and no matter how much we may think otherwise, no matter how much we may be comforted by having a CML "specialist", there just isn't going to be one. Once Druker moves on to whatever is next, next drug, next group of drugs, next Leukemia for him and his teams to work on, CML will be exactly what they want my CML'r and you and every other to think it is, and that is just like diabetes, or high cholesterol, because you can go to anyone and treat them two, right?
Lew Alcindor sat right there on television dressed as Kareem Abdul Jabaar and told the Today show supergenius hostbot thingy that it was just like diabetes.
It ain't right. My CML'r is suffering enormously, and many more are. Sure, there's a handful of CML'rs that have the magic mixture of body type, metabolism, genetics, and life circumstances that allow them to skip across the meadow of cancer like they are in a car commercial. The rest, arguably the vast majority, are just not having such a good time, and they are reminded each time they have to report to that pesky job that they need.
Good luck. I hope you find a doctor that suits you, in as many ways as there are to be suited. It isn't easy, but it's about as close as we are going to get to having a "specialist". First, Do No Harm is about all we can hope for, and even THAT is getting harder to find.
rct
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