We are all living proof that the median is NOT the message. Thank you for this.

Ed

Ditto, Eddie.

As my friend (the physicist who beat cancer at a young age) told me. "Cancer is binary. You either beat it or you don't. So don't look at statistics." As you say, we are living proof that we can prevail. So let's all just live.

Cliff

Cliff, you are so correct with that statement.......Even though it has been a rough ride for us, we arnt looking back....good counts / bad counts......blasts / no blasts.....infections, hospitol stays, what ever.....today we are feeling good....we jumped in the truck...headed to the coast and today we are on the beach trying to catch baby sharks

Billy,

You and Tina too are about the most incredible people that I have ever "met." If a love of life and forward-directed spirit could be bottled, you'd win the Nobel Prize. I don't think that I could EVER be as strong, as brave, or as determined to live life as you and Tina are. You have both been tested more than any two people should ever be, and you have stared the uncertainties of blood counts, transfusions, and bad days in their ugly faces and have kept on going. My hat is off to both of you. Your courage fills me with joy.

God Bless You.

Cliff

P.S. What do you do with those sharks when you catch them? LOL. Sounds like fun....I haven't been to the beach in 2 years!

I avoided all surrvival statistics until I had been in remission for over two years and recomend that others keep personal research down to information needed to amake a specific desion.
However, that being said, I do my best to understand the toxic medications we take to manage, control and prevent cGVHD. These meds are toxic, dangerous and are likely to bring higher risks than the GVHD in some case. I mentioned lately that long term use of Vorconozol causes skin cancer. Rapid skin cancer. I've had eight proceedures recently and almost lost my left year. My NZ doctor doesn't agree with my US doctor and wants to put me on a less toxic med with a slightly higher risk of a mold infection. Easy decision: Do I take he med that has a small chance of a future infection? Or the one that is doing me in right now? Duh!

Jon,

I agree with you 100% about statistics and reading too much. Such things can only make you agitated. My sister recently had an ultrasound done and there was a suggestion of hydronephrosis (dilated collecting systems from the kidney). She immediately hit the Internet and was crying on the phone to me, quoting statistics about possible diagnoses. Well....her CT scan follow-up was perfect. I yelled at her today, telling her to stop with the reading and start with the living. She was my rock when I was in the hospital and visited me daily. Yet, she tried to tell me my survival statistics all the time, and I told her to keep them to herself -- which she ultimately did.

Medications are a completely different story. I think that our doctors do not tell us enough about side effects of our treatments, even side effects that are significant. I think that if doctors explained things better to their patients, even the average layman would have a more informed idea about what to expect as the result of treatment. On the other hand, if the medication that you are receiving is the only appropriate and effective drug on the "menu," then it is not particularly valuable to know about side effects that might not happen. If you have no choice, then why fret needlessly?

I am surprised to hear about the long term effects of Voriconazole. I was on that when I had a fungal pneumonia that started during my first induction. I know that it can cause serious idiosyncratic skin effects, including blistering and sloughing, but was completely unaware that it could cause skin cancer. I am now taking nothing for fungal prophylaxis. The only transplant related meds that I take are Mepron (for PCP and toxo, since I am allergic to sulfa) and acyclovir. I can't remember if you are on steroids or tacrolimus. If you are, then you need something to protect you, but perhaps not something as aggressive as Voriconazole.

It's a fine line we walk between knowing too much and not knowing enough. I have always been very frank with my patients, but never felt it necessary to frighten them by reciting potential side effects of medications that occur less than 10% of the time. That's just been my approach and I don't believe that I have been dishonest with them. Were I to be asked, point blank, to go through every potential side effect on the list, I would.

Personally, I think that a bit of nihilism is the best way to survive AML. When Alexander Pope wrote:

A little learning is a dangerous thing;
drink deep, or taste not the Pierian spring:
there shallow draughts intoxicate the brain,
and drinking largely sobers us again.

he must not have known people suffering from serious diseases who were in the midst of traveling a rough road back to health. I wish I could have met him (for many reasons). I would have admonished him not to paint all ignorance as "dangerous." Sometimes, ignorance can be bliss, and it is easier to enjoy life by avoiding the potholes rather than seeing them and jumping in.

Be well, Jon.

Cliff

I agree you cannot look at statistics. Jimmy had his 1st BMT in 1988 for Hodgkins disease and I dont even want to tell you what his chance of survival was at the time but here we are 25 years later and still cured from Hodgkins. His MDS/AML is most likely caused from all his prior chemo. We were also told we had a less then 20% chance (with help)of having children and Thank God we were young and never stressed out about it so our 3 children are truly a blessing.
Margaret

Margaret,

You are a blessing. Period.

Cliff

Cliff,
You make me smile after a long day.
Thank you,
Margaret

Great article!
One of my spiritual teacher t old me that stats just tell you about average and ordinary and does not apply to all of us extraordinary people!
I am 14 months after transplant and recently I had a reply (still anonymously) from my donor, a young German lady who wrote back to me in English straight form the dictionary. I had asked her if she liked roast chicken as this has been a new craving for me I was vegetarian for 25 years- and she said she loved meat! I was allowed to write back to her in German with an English copy for the powers to be to scrutinize for forbidden personal information and I am looking forward to another answer.

As far as I know, Julie, bone marrow donation is not compulsory anywhere in Europe my daughter, who gives me lots of info, works for the British bloodbank now-, but it gets strongly promoted in Germany and it is a huge country now, therefore they have many many donors and having any German ancestry often gets us the right match form over there. I am eternally grateful!

Renate

Let me add that the people on this forum are not a random sample -- you have self-selected yourselves to help others, and there is something distinctly different in the survival rate of those who do that. I do not need to do research to know that. We have lost a few here, but VERY few. -- dave

May I just add what a fabulous group you all are, and how inspiring of a group. As a newbie AMLer, I am learning and growing in positivity with you all. thank you

Renate,

Ich kann nicht warten, bis ich kann meinen Spender schreibin meinen schreckliche Deutsch. I never wrote to my donor from Germany, who is still anonymous to me, and have decided to wait until September, when I will be able to find out who he is. Whatever the government is doing in Germany, it is certainly doing an amazing job at recruiting wonderful people who want to help others get well. I am more than grateful.

Cliff

Missy,

Read between the lines with Dave's comments. The implications are full of hope and love. I agree 100% that this is a self-selected group of people, who care deeply about the welfare of others. And now you are one of us. I am sure that I will treasure your comments the way I do everyone else's on this site.

As Dave said, we have done very well and the vast majority of us are still here. We have lost a few people that we loved, but not many, and the medical developments that are happening, right before our eyes, in the treatment of AML, especially FLT3 are astounding. I have such good feelings about our FLT3 soldiers. They are doing great, and part of that is a testament to their love of life, love of family, and love of God. Amazing....really!

Cliff

Cliff,
it is the most wonderful feeling connecting with your donor and I am sure they will be dead impressed with your German; my second letter went out recently and I am eagerly awaiting the reply. I hope that she will want to connect in real life once the 2 years are up. I would love to meet her in person, but it is up to her.
September is not far! Let me know how it goes
Viele Gruesse
Renate