Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 --- In , " Jackie Petropoulos " <blueshar@...> wrote: > > Hi Susie :-) > > Just to let you know what happened at clinic yesterday. > > He couldn't feel my spleen at all which is really great, am so pleased. > > My haemoglobin is down some and my platelets are still out but he said this is to do with the Glivec and will settle over time. The BMB is in two weeks and he's prescribed me some Ativan to take an hour before so let's hope that does something. After than I won't have to have another for 6 months or maybe a year depending how Medicare goes because they are changing the rules. > > NOW THEN guess what..! I asked him if he worked alongside or knew of Tim. His words were " Tim is the top CML specialist in Australia, if not the world " , he spoke very highly of him and with a huge smile on his face. They go to meetings together and work alongside each other. Sometimes some of the tests that are done here in Melbourne are sent to Adelaide to his laboratory. > > I felt very relieved to hear this considering that originally I was under the impression that my doctor was no more really than a GP and someone who did not really know much about CML, well its certainly the opposite. We should both feel safe knowing that we are in the hands of the best CML specialists in the world. > > Jackie THATS GREAT JACKIE, ITS GOOD TO KNOW WE ARE IN GOOD HANDS. WHEN I WAS FIRST DIAGNOSED I WAS TOLD THEN THAT TIM WAS TOP IN AUSTRALIA FOR CML. NO NEWS AT THIS STAGE AND LIKE TIM SAID 'NO NEWS IS GOOD NEWS' FINGERS CROSSED FOR TOMORROW. WHEN WE LAST CHATTED YOU MENTIONED YOU HAD HEARD HOW THIS NEW DRUG 'AMN' IS MORE CHEMO BASED, DID YOU FIND OUT BY YOUR DOCTOR IF THIS IS TRUE..? I FORGOT TO ASK TIM, ALTHOUGH HE DID MENTION IT WAS 20 TIMES STRONGER THAN GLEEVEC. ILL DO A BIG POST IF I GET THE ALL 'OK' IF I DONT CATCH YOU ONLINE THEN ILL BE ON TOMORROW AS WE HAVE CHAT I THINK... 'FINGERS CROSSED' SUSIE LEECH DX NOV 2002 CURRENTLY OFF GLEEVEC > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Hi Susie, Yes I did ask about the new AMN drug and he did say that it is at least 20 times stronger than Glivec and much more chemo based. I also brought up the subject of transplant, he is not at all keen on that because of the mortality and morbidity rate. He was very quick to state that in 2-3 years time there will be more 'Glivec's' around and better drugs than what we have now. I must say though that when I go to see him in 4 weeks time I want to talk about the real future - not what will happen in 2-3 years time but 10 to 20 years and the possible effects of what Glivec might have on our young bodies and I talk about those of us who are mid-40s and younger because we are too young to be taking toxic medicine for so many years. I know that Glivec is keeping us all alive and thank goodness for the wonderful drug but it is also very toxic and even those of us in PCRU but still taking a lesser dose of Glivec should realise that that they still have a toxic drug going through their bodies, what will happen in 10 or 20 years? Catch you later if you're online, or tomorrow for chat. Jackie [ ] Re: Tim and /Jackie > > Hi Susie :-) > > Just to let you know what happened at clinic yesterday. > > He couldn't feel my spleen at all which is really great, am so pleased. > > My haemoglobin is down some and my platelets are still out but he said this is to do with the Glivec and will settle over time. The BMB is in two weeks and he's prescribed me some Ativan to take an hour before so let's hope that does something. After than I won't have to have another for 6 months or maybe a year depending how Medicare goes because they are changing the rules. > > NOW THEN guess what..! I asked him if he worked alongside or knew of Tim. His words were " Tim is the top CML specialist in Australia, if not the world " , he spoke very highly of him and with a huge smile on his face. They go to meetings together and work alongside each other. Sometimes some of the tests that are done here in Melbourne are sent to Adelaide to his laboratory. > > I felt very relieved to hear this considering that originally I was under the impression that my doctor was no more really than a GP and someone who did not really know much about CML, well its certainly the opposite. We should both feel safe knowing that we are in the hands of the best CML specialists in the world. > > Jackie THATS GREAT JACKIE, ITS GOOD TO KNOW WE ARE IN GOOD HANDS. WHEN I WAS FIRST DIAGNOSED I WAS TOLD THEN THAT TIM WAS TOP IN AUSTRALIA FOR CML. NO NEWS AT THIS STAGE AND LIKE TIM SAID 'NO NEWS IS GOOD NEWS' FINGERS CROSSED FOR TOMORROW. WHEN WE LAST CHATTED YOU MENTIONED YOU HAD HEARD HOW THIS NEW DRUG 'AMN' IS MORE CHEMO BASED, DID YOU FIND OUT BY YOUR DOCTOR IF THIS IS TRUE..? I FORGOT TO ASK TIM, ALTHOUGH HE DID MENTION IT WAS 20 TIMES STRONGER THAN GLEEVEC. ILL DO A BIG POST IF I GET THE ALL 'OK' IF I DONT CATCH YOU ONLINE THEN ILL BE ON TOMORROW AS WE HAVE CHAT I THINK... 'FINGERS CROSSED' SUSIE LEECH DX NOV 2002 CURRENTLY OFF GLEEVEC > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Thaks for that Jackie, yeah i was worried about that, Tim mentioned about it being so much stronger, that his concern about me going on it. And also about being on Gleevec too long that is also a concern. It gets me how the doctors change thier minds..hehe...When first diagnosed Tim said 'get your life in order as you may have three years in chronic' then the next year he said...'good news, gleevec will keep me in chronic at at least another 5 years ...but remember you've lived 2 of them' then last week he said..'good news for people on gleevec, it looks like we can keep peopele in chronic for a good 20 years maybe..' heheh im confused...but then i guess we put our trust in them and they know best. The only thing that bothers me, is once when Tim was away I saw DOCTOR HOIH, HE IS THE LEADING TRANSPLANT PROFESSOR IN SA.. one day i went to him very confident as i was near the end of my first year...and his words (he was asian) 'what, you think if you take gleevec for 10 years it will keep you alive, I don't think you young patients realise what a toxic drug Glivec is. what will happen to your young bodies in 10 or 20 years? The CML might not kill you but the toxic from Glivec might' ..with all that my heart sank, i felt like i was kicked in the guts by a horse...so sometimes that is in the back of my mind....but hey they are always improving drugs...so lets hope, pray and fingers crossed. susie leech dx nov 2002 currently off gleevec > > > > Quote Link to comment Share on other sites More sharing options...
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