Hello everyone......Best to you Chris. Today I found out the results of my bone marrow analysis. It turns out that I've been dealt the big C card. I've got "Acute Myeloid Leukaemia" Probably sub M-0
The Hemo was surprised and seemed pretty upset because she wasn't expecting this result.....mainly because I've been pretty much symptom free and my blood counts have been bad, but consistant. I'm being passed on now to the Auckland hospital to discuss options. The gist I got is that there may be a reluctance to treat people in their mid-sixties, even though in my head, I'm still 40. It's ironic that the USA sent me a Medicard that arrived here today. I would like to hear from others that have AML. My personal email address is jjunge@xtra.co.nz
I'll be in the USA starting in late July, for six weeks. While I'm there, I'll try and find out about US treatments. I'm not sure New Zealand has the latest treatments. Although I have AML instead of MDS, I'll hang out here anyway from time to time.
Rgds......Jon

Jon-
I'm sorry you received these results today. I hope you see the Auckland specialists soon to determine your treatment plan.

Jen

Jon,
I know how you must feel receiving this news of AML. I have a friend I met at MD Anderson who is going through the same thing. His chemo was working one day and the next AML!!! What a shock it was to me. I met him and his wife while at MD Anderson and we have gone through this journey together. The doc's at MD Anderson are trying to get him to go back into remission with different chemo's so they can attempt a stem cell transplant. There is hope for you also. Just find a doctor who is an expert on MDS. You are not too old for a transplant. My friend is the same age as you. I am 61 and have a stem cell transplant consultation on July 13, so do NOT give up. Keep searching for a Dr. that will try to help you
What was your blast count from your BMB?
Come to MD Anderson in Houston, Tx. Maybe I can help you get set up. If you have a medicaid card that should get you started. Let me know if I can help you in ANY way. I had a blood transfusion yesterday so I have lots of energy now.....:)
Chris, your day for leaving is getting closer. I will be thinking about you and your wife and hope you are getting stronger by the day for this big trip.

Jon I"m so sorry to hear about the change in your diagnosis.

Because my orginal BM test some 2 1/2 years ago showed 23% blasts a doctor other than mine wanted to diag me with AML. The blood levels, though below normal, had been fairly steady for some time so I was diag with MDS. My understanding is that MDS can change to AML at any time. I'm 65 and in conversations with my doctor the consideration of BM transplant takes into consideration age and other health issues. They do some fantastic things these days so research it all you can.

In my case the BM transplant is not a likely option. There would be a 30 to 40% likelyhood of surviving the treatment all for a 25% chance of success. The good Lord knows that I'm going to fight for every breath with this junk but for me and others here there is also the quality of life decisions that come into play.

I say to you that you research it, see what is available here that you don't have access to there (it's my understanding from my doc and others here that advanced drugs and treatments I and others have her are not availab le in other parts of the world), then decide from there. The big thing is to never ever give up the fight my freind.

Don't let this junk decide or define who you are. It's all in your power to define your life with this stuff. Instead of this junk getting us down every day we need to live our lives with this as a sideline or a part fo who we are.

As for me I hope you stay in this group. It's a great bunch that understands what your facing and from what I've seen loves to be there for everyone.

God Bless my friend and keep us posted as to what you find out.

Mike

Jon
Im so sorry to hear about your new diagnosis. Its good that youre looking at other options in other countries. I thought you may be interested in the below article posted by a forum coordinator from Talk Blood Cancer (Australian run forum). It was posted five months ago under the AML thread.

I thought you might like to read this story from todays Sydney Morning Herald.

Human trial for leukaemia vaccine (SMH)
REBECCA SMITH AND RICHARD ALLEYNE
January 5, 2010

LONDON: A vaccine for leukaemia is about to be tested on human patients for the first time in a breakthrough that could offer hope to thousands.
British researchers have developed a treatment that can be used to stop the disease returning after chemotherapy or a bone-marrow transplant.
It is hoped the drug - which activates the body's own immune system against the leukaemia - eventually could be used to treat other cancers.
The first patients, who will be treated as part of a small trial at King's College London, have acute myeloid leukaemia (AML), the most common form of the disease in adults. Even with aggressive treatment, the disease returns in about half of patients.
The idea behind cancer ''vaccines'' is not necessarily to prevent the disease. Once a patient has been diagnosed, the vaccine programs the immune system to hunt down cancer cells and destroy them. It will also recognise leukaemia cells if they return, preventing a relapse.
The vaccine is created by removing cells from the patient's blood and manipulating them in the laboratory. The cells are given two genes that act as flags to help identify the leukaemia.
The research will be published in the Journal of Cancer Immunology, Immunotherapy.
The study, led by Professors Ghulam Mufti and Farzin Farzaneh of King's College London and Dr Nicola Hardwick of University College London, has developed a virus, similar to HIV, which carries the two genes into the immune system.
Professor Farzaneh said if the trials were successful then it could be used to treat other leukaemias and cancers.
''It is the same concept as normal vaccines. The immune system is made to see something as foreign and can then destroy it itself. This has the chance to be curative,'' he said.
The cost of treating each patient is thought to be 15,000 ($27,000), about 10 per cent more than the standard treatment in Britain.
Patients will be enrolled in the trial if they have had chemotherapy and a bone-marrow transplant. If this is successful, the vaccine may be tested on those who cannot have a transplant.

Its good to know that their working on cures all the time.
Rachael

Thanks to you all for the support and kind words. It is very much appreciated! The messages have been very helpful. Chris posted an interesting entry in the AML group about a chemo he is taking that is less toxic and invasive. I've taken note of it. Also, when I am in the USA later this month, I'll get some opinions. A good friend who I am going to be staying with in California is going to seek a referal from his GP after the weekend. Although I'm going to be passed around now to different specialists, I have a very good GP who is pragmatic and has a lot of common sense. I will listen to advice from the Auckland hospital doctors, but being able to learn from this site, my GP and others, as well as some of the advice I'm getting from our members allows me to know about different options. Happy 4th from cool winter weather in NZ.

Jon, I was given the same news 11 months ago. Since then I have bucked the trend am still difficult or bloody impossible, so keep your chin up, "The party isn't over till the fat lady sings!!!"
I think the difference between MDS and AML is to do with the blast count.

Well all, we are off tomorrow. As I have to wear a MASK TO TRY AND STOP AN INFECTION FROM THE AIRCRAFTS BUG RIDDEN air system, I will neither eat not drink, so you yankees on the 4th of July will do better than I will
Thanks everyone for your good wishes. The only thing that worries me is a 20 hour trip door to door.
I want to get there, so I sincerely hope I will!!!
Chris

Rachel,
Forgot to say that I see Proffesor Mufti, normally once per every 2 months. He is the tops in the UK on all Myloid conditions.
Very smooth, very charming, very helpful, very competent.
Chris.

Chris - have a great trip. I know you will.

We've been reading everyone's posts but we have little to offer other than moral support. I had a tooth pulled yesterday and I'm feeling remarkable well today. Lou's diabetes is pretty much under control.

Life is good!

Happy 4th of July to everyone living in the good ole US of A!

Gayle & Lou Najera

Moral or other support is probably the most valuable asset of this group. My husband, only recently diagnosed as high risk MDS had extremely low cbc but had never experienced shortness of breath until this week which seems to be a common symptom. How is this normally addressed? Are most with this problem using inhalers or oxygen or just dealing with it with transfusions?

My dad is experiencing shortness of breath also. The dr is giving him lasix after a transfusion to help with that but now I believe his is getting worse as to having the difficulties days after. Talk to your husbands dr about this. Dad says he does not want oxygen right now.

Hello Leaky Boat Crew,
The Captain here, writing to you from the top of the world, some 8,500 foot high in the Capital >City of Bogota. The trip was 24 hours of hard grind, but wemade it, and lived to fight our way out of the airport, which has to rank as the worlds most disorganised exit.!

Weather poor, overcast and chilly, but we are here, and the house was in perfect condition, with new plants on the patio, and flowers in every room....fantastic....the fridge filled with our necessities, but my brother in law didnt buy Orange Marmalade as he knows I am fussy and didnt know what to buy.

But am well and happy, so now for 8 weeks in a changed environment, doing different things, is bound to be good for me.

Bless you all, will keep in touch
Love Chris

Magnificent-enjoy your stay. Do wish I could borrow just a smidgeon of your adventurous spirit and infuse in my husband. Watching you make each day count is inspirational.

Chris - I'm so glad you made the trip. As Maryabell said, You are truly an inspiration to this forum. I too hope my husband will develop your infectious zest for life and learn to enjoy each and every day. Just being recently diagnosed and always having been a VERY, VERY active person, maybe it will just take my husband a little longer to get on the band wagon of optimism. I sincerely hope so anyway.
Tomorrow we begin our second round of Vidaza and hope it goes as well as the first round.
God bless you all and, Chris, please continue to have a great trip.
Linda

Wahoo Chris...enjoy Bogota!

Gayle & Lou