Recent Promising Treatment for Late-Stage AML (Acute Myelogenous Leukemia)

Are there any promising treatments in late-stage testing?

Yes, there are several drugs being investigated in phase II and phase III trials. We currently have a phase III trial open with a drug called rigosertib for patients who have failed prior treatment with azacitidine or decitabine, which are known as demethylating agents. The proposed mechanism of action for these drugs is that they alter gene expression profiles in the cancer cells and increase their susceptibility to death. Rigosertib is a cell cycle inhibitor and would prevent the cancer cells from growing and induce direct damage to the cancer cells, causing their death.

For PapAmore', Arend 'Odee' Lenderink 
http://papamore.blogspot.com

In Older AML Patients, Decitabine Showed Survival Advantage Over Standard Therapies

CHICAGO—In a Phase 3, multicenter trial involving patients ≥65 years who were newly diagnosed with de novo or secondary acute myeloid leukemia (AML), the cytosine nucleoside analog decitabine (DAC) demonstrated an overall survival advantage over standard therapies, including physician's advice (treatment choice [TC]) of supportive care or low-dose cytarabine (AraC), according to data presented at the American Society of Clinical Oncology's 2011 Annual Meeting.

Xavier G. Thomas, MD, from the Hospital Edouard Herriot, Lyon, France, and colleagues performed a randomized, controlled, open-label trial that enrolled 485 patients with poor- or intermediate-risk cytogenetics, and ECOG PS 0–2. They were randomized to either supportive care (n=28) or 20mg/m2 AraC SQ once daily for 10 consecutive days, every 4 weeks (n=215) or DAC 20mg/m2 as a 1-hour IV infusion once daily for 5 consecutive days, every 4 weeks (n=242). The primary endpoint was overall survival (OS). Additional endpoints were complete remission rates, safety, event-free survival, and relapse-free survival.

The results showed that patients randomized to DAC had a median duration of treatment of 4.4 months versus 2.4 months for those on the TC arm. The protocol-specified final analysis with 396 (81.6%) deaths showed a statistically nonsignificant but favorable trend for increased OS for patients treated with DAC, with a median survival of 7.7 months vs. 5.0 months in the TC arm; HR: 0.85, 95% CI [0.69–1.04]; P=0.108. When censored for disease modifying therapy, there was a significant improvement in OS for patients treated with DAC, with a median survival of 8.5 months vs. 5.3 months in the TC arm; HR: 0.80, 95% CI [0.64–0.99]; P=0.044.

An updated unplanned OS analysis with 446 (92%) deaths showed the same median survival with strengthened, albeit nominal evidence of the DAC effect (P=0.037) (0.82, 95%CI [0.68–0.99]). The secondary endpoint of complete remission (CR) + complete remission in the absence of total platelet recovery (CRp) rate was 17.8% (DAC) versus 7.8% (TC) with overall response (CR + CRp + partial response) of 2.5 (P=0.001). Safety rates were consistent with the known DAC safety profile and without major differences between the treatment arms. The most frequently reported Grade 3 or 4 hematologic adverse events were thrombocytopenia, anemia, neutropenia, and febrile neutropenia.
http://www.empr.com/in-older-aml-patients-decitabine-showed-survival-advantage-over-standard-therapies/article/204601/

For PapAmore', Arend 'Odee' Lenderink

"The" Song You Sang From Heaven

Whenever we have sung this song in church, (which we have, but not too often) since you went to Heaven ... you were right there too ... singing it right alongside of us, weren't you, Papa?

You were here again ... not in a dream ... not in a memory ... but here.

And I hear the voice of many angels sing,
"Worthy is the Lamb"

And although those have been the only times I've actually been able to truly feel and sense your physical presence since you've been gone ... I will not complain, but rather take anything that we might get.  :)

During these 'straight from heaven itself' times, I have distinctly heard your strong tenor voice, I have sensed YOU standing right next to me with all of my acute senses ... I have even caught the very own wonderful scent that is so familiarly uniquely yours ...

I guess if I were to dissect this gift I might wonder why of all the MANY songs I've heard you sing (you did sing nearly all of the time after all, ;-) ... that it's this one song that I have no memory of you ever singing in which you most distinctly have let your presence be knownn to me ... ?

However, with all my heart, I'm just glad to have been able to sing with you again at all ... and without a doubt I know for certain that your angelic self really WAS there during those deeply cherished moments ...

I LOVED it ... I  LOVE you ...

Thank You, Papamore ... I miss you so relentlessly much ... and although there are times when my very soul aches so deeply that I wonder if there will ever be relief from the grief we now fully own without you ... I above all (because you taught me) never question nor stop believing in the fact that I'm going to be there with you soon enough ... Alive Forever ... Together ...

But at least for now it seems, I have Extremely Important things yet to do, right where I'm at.


xoxoxoxo x a google to infinity

"The Song"




For PapAmore', Arend 'Odee' Lenderink
http://papamore.blogspot.com

Sidenote ... if someone reading this just so happens to have some pull regarding the music selection at Covenant Life Church in Grand Haven, MI ... could we please sing this at least once - the more the better, each and every Sunday?

He Always Made Sure We Were Okay...

On Christmas Day, 2008...we celebrated Jesus' birth with our PapAmore' ~

"Papa and Nana" picked the girls and I up that day to go over to my sister's house, which is about 30 minutes away and where we were having the party.  

I was a bit concerned about this Christmas, being without my girl's Father there, yet knowing it was still okay, because, infinite praises to God, Papa WAS THERE.  And seeing how proud he was of me, how much more relieved Papa was to know that the girls and my lives were now able to experience a life without constant continuous fear and shame...I carry that in my heart, it gives me the strength to do the right thing and be the single parent my girls deserve...  

I'll get better if you do, he told me, no more of this, Papa said as he took my face in his big as the world hands, no more of his abuse, no more of his sick ways, we can finally have you back now, it's going to be such a great Christmas day...

And so when they pulled up to our house that day, he scooped them up, as he always did, and safely tucked and buckled them into the car.

My Dad must have known that I was feel a little concerned about this day, this first Christmas of my girls now broken home....I remember him purposely catching my eye in the rearview mirror and winking at me, as if to say, it's going to be okay...

And, it was okay...it was better than okay, it was great...

We sang Christmas songs on the way, Papa turned off the radio and we just sang with our own voices, how he loved to sing!  

And the whole way there, I noticed him checking in his rearview mirror to make sure I was okay, he always made sure we were okay...

For PapAmore', Arend 'Odee' Lenderink

a crimson hue of grief

My pain bleeds vividly.

a crimson hue of grief

It startles those who see it.

the intensity of its color

I miss him in red.

with passion and boldness

The earth is eternally wounded.

he left a crater behind

All this leftover love.

the beauty of the mourning

Talking to your younger and/or school age child about your cancer...

Great podcast found HERE, some highlights from below...

• Talk to them about your cancer, share information with them. By not doing so you may be (unintentionally) pushing them towards spying tactics in order to gain information.  Clear accurate age appropriate information.
• Assure them that nothing they did, said or thought caused the cancer.
• Find a way for them to "help" you...allowing them to do so will benefit and empower the child.
• Comfort, comfort, comfort them.  Reassure them that feelings are okay.

Can I get it from you?
Cancer is not "catchy" ~ it's not a germ.

Who will take care of me?
Assure them that they will be cared for...keep routines as normal as possible.   You're so important, we've already thought of this and have set it up for you.  Make plans and say YES to help.  Consistency is Key

Is the "non-cancer" parent okay?
Assure them, tell them the doctor says they're healthy, etc.

Will you die?
If you know your disease is advanced do not make false promises. Tell them that the doctor is giving you very strong medicine and you're doing everything that you can to fight this and take care of yourself.

Fantastic Resource Link...

http://www.cancercare.org/

Support services to help patients cope with the emotional and social impacts of a cancer diagnosis must be included in the standard care patients receive, urges a report from the National Academies' Institute of Medicine (IOM).

Using This Book

This book is meant to be a tool to assist you in talking to young children.  It is not meant to make things more difficult or complicated for you as you are dealing with cancer.  By providing you with a choice of pages and topics, we hope that you can use exactly what feels right to you in helping your children understand and cope with cancer in the family.  Please do not stress about which pages to choose, or how many pages to utilize.  After using the book once or twice, your children’s responses will guide you to the next choice of pages and topics.

Missing Papa "Movie" Finale'

Find more videos like this on Maggie's Rose

For PapAmore', Arend 'Odee' Lenderink

Why?

Why didn't you fight for him?

Why didn't you tell us how to face the horrific battle?

Why did you ignore his soul's pleas to live?

Why?

Why did you put my dying Father "on hold" with no hope?

Why didn't you try harder?

Why didn't you share information with us on Palliative Care?

Why?

Why didn't you offer him even one minute option?

Why were you so threatened by a second opinion?

Why were desperate calls for any hope at all so "inconvenient" for you?

Why?

Why didn't you care more?

Why did you, seemingly, not care at all?

Why didn't you value the life of my Father?

Why?

PapAmore' "Press"

Thanks Peace4 "Gwennie" for sharing...xoxo

http://peace4missing.ning.com/profile/GwenJohnson

My Dad LOVED this Poem, which says an awful lot of GOOD about Him

A "Mother's Day" Poem

*Just for this morning...      I am going to step over

the laundry,  and pick you up and take you to the park to play. 

*Just for this morning, I will leave the dishes 

in the sink, and let you teach me how to put that puzzle of 

yours together. 

*Just for this afternoon, I will unplug the telephone and 

keep the computer off, and sit with you in the backyard and 

blow bubbles. 

*Just for this afternoon, I will not yell once, 

not even a tiny grumble when you scream and whine for the 

ice cream truck and I will buy you one if he comes by. 

*Just for this afternoon, I won't worry about 

what you are going t o be when you grow up, or second guess 

every decision I have made where you are concerned . 

*Just for this afternoon, I will let you help me bake cookies, 

and I won't stand over you trying to fix them. 

*Just for this afternoon, I will take us to McDonald's and buy 

us both a Happy Meal so you can have both toys. 

*Just for this evening, I will hold you in my arms and tell you 

a story about how you were born and how much I love you. 

*Just for this evening, I will let you splash in the tub and 

not get angry. 

*Just for this evening, I will let you stay up late while we sit 

on the porch and count all the stars. 

*Just for this evening, I will snuggle besideyou for hours, 

and miss my favorite TV shows. 

*Just for this evening when I run my finger through your hair 

as you pray, I will simply be grateful that God has given me the 

greatest gift ever given. 

*I will think about the mothers And fathers who are searching 

for their missing children, the mothers and fathers who are 

visiting their children's graves instead of their bedrooms, and 

mothers and fathers who are in hospital rooms watching 

their children suffer senselessly, and screaming inside that 

they can't handle it anymore. 

*And when I kiss you good night I will hold you a little tighter, 

a little longer. It is then, that I will thank God for you, and 

ask Him for nothing, except one more day............. 

For PapAmore', Arend 'Odee' Lenderink

Oh, my papa

Oh, my papa, to me he was so wonderful Oh, my papa, to me he was so good No one could be, so gentle and so lovable Oh, my papa, he always understood. Gone are the days when he could take me on his knee And with a smile he'd change my tears to laughter Oh, my papa, so funny, so adorable Always the clown so funny in his way Oh, my papa, to me he was so wonderful Deep in my heart I miss him so today.

For PapAmore', Arend 'Odee' Lenderink

http://papamore.blogspot.com

Hope For One Family Never Dies

 http://zerogossip.com/2009/01/08/hope-for-one-family-never-dies.aspx

Hope For One Family Never Dies

It's often times that the stories of ordinary people are never told. Only those close to the person know the story and yet it's these stories that can help others.

Thank You for sharing God's Miracle with others, Holliston...And I forgive you for calling me "ordinary" ~
(kidding, thanks so much...xoxo)

God is STILL in the MIRACLE business!

Last night I wrote...

Now even more so I (can only speak for myself, or at least should) truly believe that my Dad's sole oncologist is not intentionally trying to stifle his hope to survive but rather coming from a stand point of a "cure" and by doing so is seemingly not willing (or at least not proactive) to look at or consider his desire for more time.

Finally now my Mother is beginning to realize how much we are allowing this physician to be the sole one in charge of our Papa's life. (HUGE plug for completely separate 2nd, 3rd, etc. opinions here!)

Today a palliative doctor did come, I found out about their existence on the internet. His first remark was that my Dad was the healthiest looking AML patient he'd ever seen.

Tomorrow, we need to act quickly, I just hope and pray it is not too late, I'm trying so hard to not let the frustration of these past few weeks overwhelm me.  Hoping and praying that if she will not prescribe it, they will continue to pursue this path, to fight like my Dad desires by asking for a referral to someone else who will.

Time is of the essence, not sure how to go about this all, at all...whether to try to get prescription from her before finding another doctor or going to another doctor prior to a prescription (which could not be as well thought out) from her.

And Today!!!!!

The Hydrea (low dose chemo) has been prescribed, my Dad called Dr Vanderwoude and strongly requested it himself! They are delivering to my parents' door yet today!  (update, sigh...see comment below, we continue to need to pray and ADVOCATE upon my Dad's behalf)

I also was contacted early this morning by my best friend from college, Tami Sivy Weemhoff, (side note, I have not spoken to her in years) she used to work under the head of leukemia research at the University of Chicago, and she worked so hard and possibly even got my Dad in! 

We are faxing my Dad's treatment history records upon request to them immediately, thank you, TAMI!! 

Truly, she is an in real life angel, most definitely today, most likely quite often.

PRAYING that things will continue to move forward...

Will keep you updated...

wow, God...

There is no doubt, He's still in the miracle business

And in the most ironic and beautiful, without a doubt gift from God, thing...our greatest hope and encouragement to LIVE today came from those who came to help my Dad die.  This morning, my Dad was visited by what surely must be the most compassionate, intelligent, miraculous Hospice Nurses that were to ever walk upon this planet...so grateful to them and most of all to God...

This journey is far from over, but tonight we have much more hope than we did early this morning...Today God truly performed a Miracle.

As Papa says, 

Only HE holds the Keys

May God Lead All Our Hearts Towards Doing His Will

This was posted in Anna's school's (Grand Haven Christian) Bulletin today...
Sara Lubbers father, Arend ‘Odee” Lenderink, has Leukemia and she cherishes each prayer for a miracle and for the family during this difficult time.

Late this afternoon I saw these responses to a thread I had posted online...
http://ubb-lls.leukemia-lymphoma.org/ubb/Forum21/HTML/001695.html

From Papamore's CarePage, also posted today, around noon...
http://www.carepages.com/carepages/OdeeLenderink

More Papamore's Miracle Prayers Here...
http://peace4missing.ning.com/profiles/blogs/day-of-prayer-for-maggiesrose

More answers God is putting in our path here...
http://wendyharpham.typepad.com/healthy_survivorship/2009/01/not-ready-to-give-up-start-with-knowledge.html

Don't They Know He's Gold?

Today, after many hours of exhaustive research, we found out about Palliative Care on our own via Googling like mad on the Internet.

Thankfully, God Bless Saint Mary's Lack Cancer Center, they are already coming out tomorrow morning at 8:30am, to my parent's house, a wonderful Dr. Phillip who makes house calls.

We're also getting a second opinion, please pray for God's grace and hand to touch these physicians and help save Papa, to recognize that he is more precious than gold.

Please keep praying, anything is possible for God.

with great sadness...this update is added onto this post, as of this evening...

current doctor struck down every option, again

Still NOT Giving Up! (Sharing some things, please add thoughts if you're able)

Goal:  SLOW IT DOWN - Keep It at a MANAGEABLE LEVEL!

These ARE Potential Options!!!

Supportive Care

My dad has been on supportive care for AML for the past 18 months. This is 14 months past the time the docs gave him. He does all the things you have mentioned, temp twice a day, checks for bruises, stays away from people who are sick and takes some medications. He takes Tranxemic(sp)acid to increase his platelets, hydrea (low dose oral chemo), anti nausea tabs if needed. He visits his GP sometimes once per week to keep an eye on his counts, and when the counts are stable once a month. He always has Rulide (antibiotic) in the cupboard and has been told to start taking it at the first sign of any infection (eg. sore chest, sore throat etc).

http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/forumdisplay.cgi?action=topics&forum=Living+with+AML&number=21

Dacogen

T-cell infusion 

Radiation

Maintenance Chemo

You DO NOT have to be in remission to do this!

Low Dose Chemo

mom is in her 70's and she's been having monthly chemo treatments for the past year that have kept her leukemia at a manageable level

Clinical Trials

Chemo Tablets

(hydroxyurea, which comes in a pill form - used to control high white blood cell counts)

Holistic Treatments?

Red blood cell transfusions

Mini-transplant

A transplant done when the patient's not in remission is therefore trickier BUT not impossible.Also, a "mini" is not a consolation prize. They work. The idea is to increase the patient's odds of survival, to weigh the various risks involved and choose the best treatment plan for the patient based on disease, donor source and any health issues the patient has in addition to the obvious.

Chemo (Vidaza or Dacogen possibly in conjunction w/ Mylotarg/Clorar)

 posted 01-01-2009 05:35 AM             

---

Grape-seed extract kills laboratory leukemia cells - new research released yesterday.

http://www.eurekalert.org/pub_releases/2008-12/aafc-gse122208.php

Decitabine in elderly AML has been getting a lot of attention lately in new protocols.

http://www.eurekalert.org/pub_releases/2008-12/osum-oap120508.php

http://www.physorg.com/pdf147967841.pdf
"On the decitabine trial, patients received the intravenous drug for one hour a day for 10 consecutive days each month until the leukemia was gone. Subsequent cycles of the drug were given for three to five days, customized for each patient based on clinical response or toxicity."

U.S. Approval For Clolar(R) To Treat Adult Acute Myeloid Leukemia Sought By Genzyme

http://www.medicalnewstoday.com/articles/130777.php

I had this drug for relapsed aml in July 2007. It was extremely costly, but it got me into remission. The only question I have is about the duration of the remission using Clolar (clofarabine). I believe it is on the short side (weeks to months), which is useful if you're going straight to transplant.

My husband had clofarabine also when he was refractory to other drugs and it got him into CR3 for a Tx. It was part of a clinical trial at the Hutch.

My husband (69)just finished his clofarabine w/cytarabine and had his 14 day biopsy. How many of you went into remission long enough to go right into a transplant?  He was clean for 1 month after his Induction of danorubicin/cytarabine, then relapsed and had no success from MEC w/a clinical trial of Siralimus. 

Definitely get another opinion, and educate yourself as much as possible.

My dad (age 75, his birthday was Christmas Eve) was diagnosed with AML in Feb 2008. He also found out then that it developed out of MDS, and that he had chomosome abnormalities, that made his chances for a remission very slim. Combined with his age, they basically told him there was nothing they could do.

So, not being ok with that answer, we got second and third opinions. The second said he could try standard chemo which might be difficult for someone his age (although he was in excellent health). The third was a less toxic alternative that included the Vidaza/Mylotarg regimen that you mentioned.

He chose the Vidaza/Mylotarg which worked very well on the AML (blasts under 5% after first round), and quality of life was very good (treatments were done outpatient), however his counts never got back into normal range. Luckily, he did not have any major complications. The only issue was the docs said it would just be a matter of time before the treatment became ineffective.

So again, not being satisfied with that, and with all the education we received from the wonderful people on these discussion boards, we decided to pursue a mini-SCT in hopes of a cure. Minis are better tolerated by older patients because they include a less toxic pre-conditioning regimen than a standard SCT.

Currently, my dad is at the Hutch in Seattle, where he is at day +36 post transplant and is doing well, with his white counts in normal range, and the reds and platelets on the rise. This is also being done on an outpatient basis, and luckily again he has had very few complications.

PJ also mentioned etron's mom (who I beileve is 72). Her mom was diagnosed over a year ago with AML, MDS and chomosome abnormalities also, and has been doing very well on Dacogen. I e-mailed with her last week, and they are also planning on pursuing a mini-SCT in the near future.

I hope this info helps some, and like everyone says, don't let statistics scare you. They are just historical averages that are obsolete as soon as they are printed. New advances are being made everyday, and every individual is a unique case and personal sutuation.

Best wishes and prayers,
Mark

Sloans, Johns Hopkins and Fred Hutchinson

"GET A SECOND OPINION! I can't stress that strongly enough."

- direct quote of someone else, not mine

(more quotes from others on AML board)

"Ask and ask again. Ask WHY. I wished I would've. I am the one who asked the doctor about it in the first place. I should've pushed the envelope."

This is what "Best Friends" look like

Art and Odee, Odee and Art...Forever

Just seeing them there,
in this photo...makes me happy

Thank You for doing such a great job at loving my Dad, Art......xoxoxoxo

We Haven't Much More Time

Friday's White Blood Counts, 2.7

Today, Monday, White Blood Counts were at 10.2

This is not a healthy jump, it's a sign of the demonic monster trying to take over his good blood.

Thank you for your prayers, they are great, so appreciate, etc.

Okay, here is the thing, looking for a Clinical Study Treatment or Alternative Treatment to start very soon, connections would be great to help get in faster, please leave comments below.

Please, save whatever else you need to do for tomorrow, today Papa needs your help.

Looking for experts in the AML field. Links above right and I'll leave more below, thanks...

Living with AML, any advice, please?

My Dad is 70 years old young, he looks and feels great, there's only one problem...he has AML, Leukemia, and both a try at chemo as well as mylotarg, have not put him into remission...so now? Well, thus the point of this post...

Are you or is anyone that you know familiar with AML? Do you have any contacts in this field? Have you or one of yours ever traveled a similar journey? Could you please take some time to share some tips, advice, resources that you might have learned along the way?

If you've ever read, know, heard of something, anything...please let us know, leave a comment...

Please don't hesitate to share...

Thank You

Please don't take on the role of diffusing my "fight" for my Father, this is how I must travel this journey...God understands, my Dad supports me and to be quite honest, that's really all the opinions regarding that matter.

PapAmore

Ted Kennedy didn't give up, why should my Dad?

He shouldn't...hope is alive, believing in it doesn't mean you are unable to look at the facts, living in dream world, hiding from it all, etc.

It means that you're a fighter. And honestly, what better fight could there be than one that works towards keeping this man, Odee Lenderink, around for as long as possible...

Ted Kennedy's cancer 'worst kind'
WASHINGTON - A malignant glioma — the diagnosis doctors gave Sen. Edward M. Kennedy — is the worst kind of brain cancer. Malignant gliomas strike almost 9,000 Americans a year. Survival statistics are grim — few live three years and for the worst subtype, half die within a year.

Who lasts longer — and some do — depends on exactly what form of glioma someone has, whether surgeons can cut most of it out, age and some other medical details.

Kennedy's doctors didn't mention surgery, suggesting that may not be a possibility for him.

"As a general rule, at 76, without the ability to do a surgical resection, as kind of a ballpark figure you're probably looking at a survival of less than a year," said Dr. Keith Black, chairman of neurosurgery at Cedars-Sinai Medical Center.......