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             

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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."