My dad has AML

[Angie W.]

After almost a year of stable blood counts, my dad was diagnosed yesterday with AML.

He has 30% blasts in the marrow and 20% in the blood. In a matter of 4 weeks, his white count went up over 50,000 to 79,000. His platelets also jumped significantly. Any reason for that? All other counts remained the same, altho low.

We knew this was a possibility. But I’m so stunned by how quickly it progressed. Is that what it is supposed to do?

The doctor put him on an oral chemo, Hydrea (sp?). On Tuesday, he goes back to discuss some other options including a stronger oral chemo (My parents did not know what this would be), or regular chemo, or even nothing at all. Obviously the prognosis for each choice is different. Other than the usual side effects from MDS, he is in very good health – no other health issues. Does any one have any thoughts, suggestions, insigt on our optioins? There are certainly risks to the chemo and we are not even guaranteed a remission. I just wonder if it will buy that much more time after he would go through it. And nobody knows how much time we really have. They’ve thrown out different scenarios that range from 2 months to 1 1/2 years.

His hemo and his internist have been working closely together and they are forwarding his info to another physician who just specializes in diagnostics. Just to see if there is some other piece to plug in to this horrible puzzle.

My head is still spinning. I had been so thankful that he has had such a stable year. And then this just happened so suddenly. I’m trying to get my brain around it all. Feels like a bad dream and it makes my heart hurt.

I don’t even know if there is anything I should be asking you all. I guess I’m just rambling. My apologies for that. I don’t know which way to turn. I have not posted very much to this forum, but I faithfully read it each day and am so aware of the battles that you all bravely face. Would it also benefit me to check into a leukemia forum? Has our focus changed? Does he even really have MDS anymore or just AML – or is it both? I’m just so confused and incredibly sad.

I pray for all of you who suffer, directly or indirectly from MDS.

[karenkay]

I have no answers for your questions just a word of empathy for your situation. I am so sorry that you are going through this. My situation is somewhat similar this holy season and I am feeling just as lost and scared. I don’t know what I would do without the support I find on this board. I pray for all of us everyday.
I hope you get some answers to your questions.
God bless all of us,
Karenk

[CarolineG]

Angie,

I wish I could give you advice as well but I can’t. My Dad’s situation is getting worse very quickly as well. Feel free to keep rambling. Heaven knows you have probably read enough of mine. Cherish each good day that you have. Make some more memories and don’t concentrate on the scenarios. When you go to bed tonight, think of only tomorrow and make it count. I have had to learn to do that. Living one day at a time isn’t as morbid as I once thought it would be. Now I am a bit more careful in what I say and do.

Blessings,
Caroline

[Sad About Dad]

Angie,

I am so sorry. My dad White Count and Platelet counts went up too when they told us that he had transfer to AML.

I thought the doctor was crazy. Why would the numbers go up if he had transfered to AML. But someone else on the board said that the numbers went up and they were told they had transfered to AML.

But my dad also went into kidney and liver failure. There was nothing they could do for him. I am so sorry. This is rough time of year.

We were going through the same kind of hell last year at this time. I will pray for you, your family
and your father.

[Suzanne]

This is rightfully scary but don’t give up. As I have written before progressing to AML seems like the best thing that happened to me because then there were no choices except supportive care or try heavy chemo (they have developed more choices in drugs since it happened to me)After NIH said they did not think anything would work & recommended nothing, My doctors at Johns Hopkins recommended agressive chemo and I have never been sorry that I listened.

My MDS also progressed pretty suddenly just under a year from diagnosis. My counts went always down but I do know of others with different types of MDS that had white counts go up instead. I had 75% blasts in the marrow (they later told me I had a low % out in the blood but never gave me an exact %)the chemo worked for me-put me in remission even tho I was very high risk and statistics said it was unlikely to work. I then went on a drug trial of Zarnestra for a year hoping to prevent relapse and so far there is no sign of relapsed. There are no promises. Each person is different in the way they react. But I started off with a 30% or less chance of going into remission, Then maybe a 30% chance of staying there that increased to 40% when I took the Zarnestra and I believe has continued to increase as time has past. Last we talked about % chances mine were at about 50% (for exactly what I am not sure-an extended time of being free of both leukemia and MDS I guess) Now my Dr just says he would like to see me go a year from the end of medication before he makes any other prognosis judgements. I have about three months to go to hit that anniversary. No matter what happens, I have already had 2 years of wonderful quality time since progressing into AML. There are no promises, but there certainly is hope. So don’t let % chances like 30% scare you-those are good odds with treatment for this disease and someone has to make up those success percentages besides me! Listen to your Dad’s alternatives with your mind open and take the road that feels right to him even if all the alternatives are scary. Then enjoy each day as much as possible. We will all be hoping for the best.

[patti]

Suzanne,

You did such a good job of explaining what you went through. Thank you. It’s very helpful.

Patti

[Angie W.]

Thanks to all for your thoughts and input. There is comfort in knowing that we are not alone in this battle.

Suzanne, I appreciate your comments on the chemo. I’ll be anxious to hear what the doctor has to say about this option. I know there are risks to that too…just very scary not to know whether it would be a ‘sure thing’. I’m sure his overall good health would be in his favor should we go this route.

[kristyk]

Hi Angie
Hang in there. I know how you feel. My mother ( dx MDS 2/05)was stable as they come until she transformed into AML 11-7-05. Her counts were normal(ish) on a monday and she was AML by the following monday. It was rather sudden I think. However I do maintain hope because I read about it here and on the leukemia living with AML forum all of the time. Your Dad has some options and my only advise is to get the info/consultations you need asap and start something asap. At least in my experience the feeling of urgency( on my part as well as that of the doctors) increases SIGNIFICANTLY once AML is determined.
For me, the quandary has been whether or not my Mom should have gone with the induction chemo vs the trial decitibine. Her doctor seemed to think that if the decitibine proves to not be effective he could always “pull out the big guns” as he calls the traditional induction chemo. I have to have some faith that he knows what he is doing. Options do exist though, and I do take some comfort in that and in no way think that options have been exhausted. There is always plan B! As everyone indicates everyone is different in how they respond to treatment.
So good luck and I will be praying for your Dad. As for you..take care of yourself. Sounds Like you are an awesome advocate/treatment partner for/with your Dad. Go Fight Win!!
Kristy

[sugarwhale]

Dear Angie,
Please don’t despair! I have an idea! Take all these posts and check out the date of diagnosis of, say, AML. You’ll find something a bit surprising: You’ll find people LIVING with AML. You’ll also find that people are living LONGER with AML.
Know that we are all with you and hope for the very best.
~~~ Janet

[shirlsgirl]

Hi Angie,

Thinking of you and Dad. It’s great to hear a story like Suzanne’s …it gives us all hope. Hoping the oral chemo works wonders. Keep us posted when you can. Sending positive thoughts and prayers.

Hi Kristy,

Wishing your mom all the best. Hope the decitibine works magic for her…please let us know how she’s doing if you can.

Take care,

Jody

[Angie W.]

Dad went to the doctor today for CBC with bags packed to go directly to the hospital to begin chemo. However, his WBC has come down from 95,000 to 90,000. (On Tuesday, they increased his dosage of hydrea). So, they sent him home! He’ll return on Monday and see if counts are still declining. If they are, this could buy him some time before he begins chemo. Don’t know how long – could be weeks, months, a year…??? However, it has at least bought us the weekend to be together regardless of what Monday brings. That was very important to us as our young children will be able to see him before he goes to the hospital (or maybe not!!) on Monday.
So apparently, we just need a little more Hydrea and a little more time for it to kick in.

It has ended up being a better day than we thought. And in this uncertain day to day battle that we fight, that is a blessing!!!

[jeanswear]

Mom supposedly now has AML. Her hemoc won’t even try Revlimid because she doesn’t beleive it will work. Trying to get another hemoc to look at her. Mom is 73, lucid, can walk somewhat unassisted, eats well. Transfusion dependant for platelets (every other day). Her hospitalist and hemoc want her transferred to hospice. In fact, her hospitalist asked me yesterday if i had made a decision as to when i want to take her home. My answer to her was “we are transferring her to another hospital that has real doctors willing to treat patients”. For obvious reasons, she isn’t too happy with me. Maybe if she hadn’t said “you have to stop researching this illness and just make your mother comfortable” things might have been different.
Sorry, needed to vent

[Author]

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