Hello Lora,
I'll be happy to help explain all this blood report data. I can probably even do it in person, if you like. I live about 5 miles east of Denton, in Crossroads,TX (just south of Aubrey). Please email me off list and I'll send you my phone number. Where is Terry getting treatment? Regards, Gale Bacon dx'd 3/00 Gleevec 400mg molecular remission 09/01 --- In [email protected], [EMAIL PROTECTED] wrote: > things are going pretty poorly for us....but I promise, it is not as bad as > it seems. Terry is not taking the Gleevec at this time, he was unable to > function "period" & our finances were just not able to handle a "stop" in > income. The good part is that if & when we get to MD Anderson & on a clinical > trial, most do not want him on it a prior 30 days before starting the trial. > We hope to revisit the Gleevec by the end of March or no later than June 1st, > when Terry has a lighter work schedule. OH!! We also qualified for one > year's financial aid for the drug, so that was a huge relief. > > We are currently dealing with the Hydrea at 4 pills a day, which leaves him > extremely dizzy as he changes positions such as sitting to standing, etc. > Once he adjusts , he can then walk or whatever. Unfortunately, we are still > awaiting financial aid for it, and we had to buy another week's worth of it. > ouch > > Next, side effects of the Hydrea....it raises the Uric Acid level (thank YOU > CML list for this tidbit) Terry has suffered & suffered through minor & > very severe kidney stones for the last 10 years. Uric acid stones are not > visible on Xrays, so the doctors were never able to help him or refer him to > Dallas to get them ultrasounded. Anyway, his uric acid levels were rising so > high, the nurse called immediately & had us rush to get him on Allopurinal. > He was taking it, but his levels were so high, they increased the > dosage....it is relatively inexensive, so we can handle the cost. > > Next, 3 weeks ago, he also came down with another sinus infection.....par > for the North Texas area......and we couldn't afford the drugs for that, so > they prescribed Amoxicillin that is inexpensive, but not near as effective, so > he is on a 2nd round of it. > > argh...to be the working poor!!! The cancer doc in Denton is seeing Terry > for free for now...and they are covering local lab work....but the labs they > sent such as comprehensive & now for the Uric Acid are getting out of hand, > and now we can't pay them. > > We are in such a quandry...in a perfect world, we would like to pay all the > hospital related bills at least $10 each per month....now we don't even have > that....we spent over $300 on meds for January....and that was just the bare > minimum to get by. > > we have much to consider, this has been very overwhelming because we just > don't know how to overcome the intense feelings.....the money is just one of > many issues we face. We realize there is much hope in curing & putting the > disease into remission. But, we are still trying to get his white blood > counts down!! > > oh!! he left the hospital around 11/20 & his count was around > 86,000........by the time we got to 3 weeks ago, he was back to 154,000 (I am sure the > sinus infection helped with it increasing!!)...he was 256,000 at > diagnosis...but with increasing the hydrea & being on the amoxicillin, his count was down > to 66,000 this past Wed. > > also, could an armchair CML friend give an overview of what all this means > below....I am typing this from his hospital chart. > > 11/11/04 WBC 256,000....27% blasts......14% metamyelocytes....1% > promyelocytes....hemoglobin 12.8 (this has continued to be a problem the doc > says)....platelets are 531. > > we got a book on Adult Lukemia, and while I am intelligent....the crash > course on anatomy & then blood has been difficult....I am not as quick a study as > I once was!!! > > we have other unexpected dental things coming up with me first, and then our > children, and though we have dental insurance, it pays so poorly that we are > just going to be out quite a bit....one reason why Terry just needs to work > for a few months. > > I appreciate all those that said to just push through the side effects of > Gleevec...and I did greatly encourage my hubby....but it gets to the point of > wondering where I crossed over into nagging!!! Terry had to decide that > sleeping 24 hours & being non functioning was just not for him right now. Maybe > if he can get his cell counts down....or try a different drug he will have > better results.......one moment at a time!! > > Lora ------------------------ Yahoo! Groups Sponsor --------------------~--> Help save the life of a child. Support St. Jude Children's Research Hospital's 'Thanks & Giving.' http://us.click.yahoo.com/0iazvD/5WnJAA/xGEGAA/8zSolB/TM --------------------------------------------------------------------~-> New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. 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