I am e-mailing you. If you see this first you might want to check out my story at http://BibleThought.org -- you can get to it from the home page at the bottom -- it is called "No Visitors Please" -- A story of leukemia survival. I look forward to being in touch with you. Take care -- dave

i had emailed you , please let me know how you are doing.

Hi...Things are progressing. I met with the Haematologist at the Auckland hospital and the only course of treatment they offer here is intensive chemo followed by at least four weeks in hospital, primarily so they can react to infections and other problems.
My GP has been helpful about exploring options and has spent a couple of hours talking to me and my wife outside of his practice hours. He calls me just about every day. A very welcom contact from a very busy doctor.
I intend on visiting a Cancer centre in the USA....Califonia for treatment options, probably early August.
Thanks and best wishes
Jon

Jon -- please keep us up on your progress. Intensive chemo is what got my problem under control (I will not say cured because no telling when it will come back, but it is in remission). Please e-mail me if you feel I can be of assistance. Praying for you -- dave

Well im not someone who has or has had aml but I did care for my husband for 2 years who had it. The hemotologists who cared for him used to send students to our room to talk to me I read and studied every piece of information I found on AML i requested every test result i felt somehow if I knew everyyhing the better chance he had. Im no doctor but I already have to wonder what they are thinking I have never heard of Aml not being treatedvery aggressively from the begining i would loveto talk further to you and yourife if you would like to thanks, michelle

Jon, How is your treatment going? Did you decide to go with the induction chemo? It really helped get my mother
AML under control. Thinking of you! Lucia

I've been a patient at City of Hope in California since August. I've had a round of Dacogen and tolerated it reasonably well. I'll have the second round of five infusions on Monday. The doctors want to do a bone marrow transplant if they can confirm a donor. My kids didn't match and I'm not going to check my 20 month old grandson.
I've been lucky in terms of symptoms, although I'm feeling a little flat and get a bit dizzy now and again when I stand or climb stairs.
Thanks for the good wishes
Jon

Wishing you all the very best with your next round of chemo Jon...
It sounds like you have a terrific frame of mind to make it work for you..

Hugs Jan xox

Jon: Don't worry about the dizziness -- that will be with you to some extent when you exert yourself or get up quickly until you get all through with it. Symptom of low blood numbers and possibly low blood pressure -- keep an eye on your BP especially if they are giving you beta blockers. Just be real careful getting up because if you pass out you could go down like a bag of potatoes and really hurt yourself. After while you can feel what is normal for you or not, but be real careful. Great to hear from you -- please keep us up on things -- dave

Jon, My mom checks her BP everyday then decides if she should take her BP meds. So far since the diagnoses she has not had to take anything the AML has kept her high BP at bay. She also feels dizzy from time to time. Good luck with your second round! Keep us posted on your progress. My mom starts her second consolidation round on Oct. 19th. if her numbers are high enough which i think they will be her white count jumped to 1.3 this morning. My prayers are with you!! Lucia

I think it is a good idea to take your BP maybe several times a day and let the doc know if it is averaging normal or low, especially if you are on a beta blocker. I agree with Lucia's finding -- I have not had any BP problems since my chemo. The problem is, when they take that one reading at the doc's office, it tends to be about 10-20 points higher than what I average at home, so I take my readings with me to prove what it typically is. I think most doctors will work with you on this. If you can get off of the BP medicine you should -- you will definitely feel a whole lot better and be able to do a little exercise without getting totally spaced out. Of course, when you are on chemo any exercise is a different issue -- it needs to be just enough to keep your muscles from getting stagnated, but not to get them tired or to build them. Take care -- dave

Hi Jon: How are you doing now? Still weak? I found that my body could not get stronger until I could give it the needed nutrition. Even though stuff tasted like metal and smelled "off" you have to get something down. I found that it helped if I could help prepare the meal; chop something, set the table (of hospital bedside table). I found that cutting the Ensure with some milk and using a straw helped get it down. Have someone bring in whatever you are craving and try to Sit Up to eat. It takes many muscles to sit up in a chair so it is good exercise and better for digestion too. Think Protein and calories.
I am facing another round of chemo. and this reminds me what I have to do to be able to get stronger once more.
Take care. Celebrate the small gains by journaling them.
Wishing you the best.
Darla

I'm two weeks after my second round of Dacogen. It hasen't gone as smoothly as the first. Ended up in the hospital for five days because of a high fever. First hospital stay in my life. Good people and good care at City of Hope.
Aside from being run down, the latest is a very sore mouth. I should have listened to David and avoided the sharp stuff. I guess all of this is part of the chemo and I have to say that it is really going pretty well. My wife had to go back to New Zealand for a couple of weeks to get the house sorted out and to get a longer term visa. She comes back on Monday night next week and I'm likely to start the third round about then.
Best to all!
Jon

Jon -- GREAT to hear from you and to get an update. It really sounds to me like things are par for the course. I was warned not to eat toast but just could not resist a toasted cheese and ham sandwich that my daughter made for me, and my mouth did not recoverd for a few weeks. But everyone is different and you have to keep your mouth clean. Have they given you the baking soda and salt mix? The good nurse got after my case for not washing out with it at least once an hour. They irrigated me so much with saline that I had to get up at least once an hour anyway, so I washed out with it every time I was in the bathroom (whether I needed it or not). Hang in -- it will improve and you will be able to taste your food again. We are praying for you -- dave

I'm so pleased that things are going well for you...I found I would get Fungal Infections in my mouth all the time...and had drops to use...
What part of new Zealand are you from...My husband & I cruise there once a year and I have a 2nd cousin we're catching up with in Feb in Taranga ...Keep up with your positive thinking..

Hug's Jan xxx