Thanks Skip. This makes me a newbie with only 14 years of treatments. My path seems too easy being able control my WBC under 30,000 and using Procrit to maintain Hemg.. between 8-11. I agree with Marty that your CML record should be investigated and approved. The world needs to know that CML can be controlled. I do remember I was told that I had 5-10 years, later it was 20 years. Now my ONC states I will die of other health health problems. We can show other people this CML is controllable.
On Saturday, April 16, 2016 at 2:40:25 PM UTC-5, skipd wrote: > > Well for those who may not know me, Name is Stewart Duffie (Skip) I have > had CML for about 38 years now. When I first was diag in 1977 there was > not much in the line of drugs, in fact there was none except Myleran. I > survived with drug for 27 years, the Hem docs said to my GP let his counts > go up until over 100,000 (wbc) and then start myleran at 2mg a day until it > comes down to about 50% then one mg a day until it gets down to about > 30,000 then 1/2 mg until about 20,000 then stop. Let the wbc drift until > until it gets back to over 100,000 then repeat all over again, we did this > every year until 27 years was up then my spleen started to act up. Wheee > there was a new drug would I go on the trial .. yeep Imatinib would be my > new drug It was not cheap, but we went on it until after about 2 years my > Hem doc it was not working, beside he wanted me to try new drug call > Nilotinib, same company just stronger, so I took nilotnib until it failed > after some time. but we have a new drug coming down the line called > Dasatinib lets try that. That game so much plural Infusion they had to > quit. > went back on Nilotinib. I was in my 30th year with CML. I gues the doc > thought it was a lost cause so he said will see you in six months, well by > that time my WBC. RBC, Plts, Neut, and ANC all we in the critical stage, > started getting blood and platelets twice week That is every Tue received > platetlets IV . platelets and Fri IV Red Blood Cells. The my Ferritin > started going up until now it is over 9,000 it should be 200 I get Desferol > three time IV for it. My Platelets are low due to all these ddrugs over > the years killing my bone marrow so I cannot product plts. Red goes down > but not as fast. I see all of you with CML that have such a hard time. Yet > I am just coasting through this feeling not to bad, have had some rought > spots, but all in all I feel not to bad I am getting up in years now, > For those of you needing infusions it is not too bad, I have a PICC Line > in (see utube Purple PICC lines ) People donate blood and plts how kind as > I get single donor platelets > Apheresis Platelets) which take a 4 hours to give. other than cml I am > healthy > > Next I want to thank Marty and I candoallttc asking me to talk about my > journy with CML . Thanks so much for your interest. > > On Thursday, 14 April 2016 13:13:02 UTC-3, skipd wrote: >> >> I did not know about google cmlhope. I lost yahoo a year or so ago and >> never could get back on. I am now back on google and thanks to Marty all >> seems right with the world. I have had CML for a long time and will go off >> and on the internet depends on where my blood and platelets are. all that >> means is how tired I am. I do read all the posts when I can. I want to >> say hi to all the long timers and the newbies to CML. I think someone once >> called me an urban legend, which I am not just old and wasting the >> takpayers money. If anyone is interested >> I would give me stats, but I am sure most of you are tired of it.. >> health to all. >> Skipd >> > -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/d/optout.
