Saturday, January 10, 2009

AML and Potential Ways to Gain More Time

Upon my Father's initial diagnosis with AML his oncologist firmly instructed all of us to "not be getting on the internet, reading up on AML" that to do so would just scare us and make everything much more difficult. 

So we didn't...hadn't...not up until she closed the book on my Dad's life and left him with no options. I started looking AML up then, specifically because my Dad WANTS TO FIGHT THIS...

We now know that my Dad does have options, I just hope that it's not too late.

Quoting and linking info I've found online here below...

The American Cancer Society is happy to address almost any cancer-related topic. If you have any more questions, please call us at 1-800-ACS-2345 at any time, 24 hours a day.

The DCE-MRI technique

"Compassionate Drug Use"  Emergency Use Investigational New Drug Program for Oncology Drugs Telephone: 888-463-6332 Description of Service: Through this program, patients with severe or life-threatening illnesses who are not eligible for clinical trials, and are in an urgent medical crisis, may be able to receive drugs not yet approved by the FDA to be used right away. The program is also known as the Compassionate Use IND Program. A patient's doctor should contact the FDA with questions regarding compassionate use of an investigational drug. The program only allows for doctors to make emergency IND requests. There are two direct lines (for doctors' use only): December 11, 2008 (San Francisco, California) — Older patients with acute myeloid leukemia (AML) and myelodysplastic syndromes should not be prevented from proceeding to allogeneic hematopoietic cell transplantation (HCT) on the basis of age alone. Study results, presented here at the American Society of Hematology 50th Annual Meeting and Exposition, showed that outcomes for older patients undergoing allogeneic HCT were not significantly different from those of younger patients, even after adjustment for multiple comorbidities.

  • Division of Drug Oncology Products: (301) 796-2330 (Ask your doctor to call this number) 
  • Division of Biological Oncology Products: (301) 796-2320 (Ask your doctor to call this number)

ScienceDaily (Jan. 3, 2009) — They have identified a novel target that may help to combat the growing problem of therapy resistant cancers and pave the way for innovative therapeutic approaches.

Clinical Trials

Date: June 2, 2008 - Data Show Encouraging Results for a Potential New Front-Line Treatment Approach in AML

If left untreated, leukemia cells will eventually overwhelm and lead to the type of suffering that not even strong painkillers will relieve.

seeking the best help for us or a loved one. 

It would be ridiculous to just die while modern medicine has come so far with treatments. 

Clolar to treat adult patients with acute myeloid leukemia (AML).

Intensive Induction vs Palliative Therapy for Elderly AML Patients

"Some of the patients we are treating successfully had previously been told by other physicians to 'go home and die.'

One thing I found per googling is Hydrea.  Per Hydrea, this is a "chemo pill" of sorts that works to lower untreated AML's skyrocketing WBC's. It even looks like you can purchase it online via pharmacy in Canada. Sounds like some even use it prior to induction chemo.

High-dose hydroxyurea in the treatment of poor-risk myeloid leukemias

Low-dose chemotherapy (ie, hydrea, low-dose cytarabine) may also be useful as palliative therapy or as a treatment prior to standard induction therapy.

What is Hydrea (Hydroxyurea)?

AML and Hydrea pertaining to Cancer Management

Hyperleukocytosis in AML (WBC count of more than 100,000) This link speaks of the use of Hydrea in AML when used in emergent leukapheresis,which, from this link, seems to be the treatment that should be used if the WBC's are over 100, 000.  For those who suffer from high leukocyte count can receive cytoreductive drug (hydroxyurea and cytarabine) to control the leukocytosis related complication.

The combination of HU, azacitdine and GO appears to be a safe and effective regimen in the treatment of AML and high risk MDS in the elderly.

Older, less fit patients have a poor outcome, and few trials have been conducted in this patient group.
Low-dose ara-C treatment was superior to best supportive care and hydroxyurea because it had greater success in achieving CR, and it could represent standard care against which new treatments may be compared in this patient group.

Overall, our study showed that low-dose cytosine arabinoside given by continuous infusion together with continuous infusion GM-CSF and hydroxyurea was well-tolerated and effective in treating elderly AML and MDS patients who were not eligible for standard induction therapy.

GM-CSF priming can enhance the cytoreductive effects of low doses of cytarabine. This combination therapy is well tolerated, and should be explored as an alternative regimen for high risk and elderly AML and advanced MDS patients.

Low-Dose Cytarabine Improves Survival of Older Patients with Leukemia

There are several exciting things happening in new treatments for AML. We saw many studies at this meeting with those agents, and I think that in a year or 2 the data will mature to the point where they are going to start contributing to improving outcomes in AML, which is very good news for patients.

FYI, This article above is from 2005


Sara Huizenga Lubbers said...

So many options for you, so much will to live within you, so many surrounding you now, determined to remain blind to the hope right in front of all of our faces...why...I'll never understand why...

Sara Huizenga Lubbers said...

Will Adrian said...

I was just thinking back to my dad's untimely and extremely fast(5 days) decline in health, which lead to his death from AML 2 years ago, and wanted to look more into what "could" have been done, although it was hard because we only found out he had AML 5 days before his death. He had no symptoms other than a clot he noticed in his forearm 5 days prior, which he decided to get checked out at the hospital. He was 60 at the time (looked 40), he was running 4 miles a day, everyday, and was in perfect health (he was a doctor too). I admire your persistence in trying to help your loved one fight AML. I wish I could have at least had the time to try. God Bless

Sara Huizenga said...

Will, that's so hard ... I'm so sorry and promise you my prayers. When did your Dad die? Our Papa passed away on January 11th of 2009 ...

Anonymous said...

Hi, my Dad has aml with flt 3 he was diagnosed in January was in remission for a little bit and now is out and fighting the beast again.. it's the hardest/ saddest most overwhelming time in our lives. I am so truely sorry for your loss. This blog is a wonderful way to honor your Dad and help others, thank you !Great info here.
Canandaigua ny

Sara Huizenga said...

Thanks so much for your comment, Lori ... keep the faith - there has been so much progress as of late done for AML - I will be praying for your Dad ... xoxoxoxo

Sara Huizenga said...

Northwestern University on Chicago is one of the best places for I've heard - my Dad was two days away from going to when he died ...

Anonymous said...

Hi, thanks for your words and thoughts. My Dad died on June 20, complications from AML, he was diagnosed 6 months earlier, but hadnt felt well for nearly a year before although many tests showed nothing irregular until the disease came out of his marrow and they saw it in his blood. He felt a deep pain down inside him , now we know it was the blasts of white blood cells coming out of his marrow that was almost a year before he was diagnosed. Dr. never caught it or thought of it. He also had been exposed to Benzene for two summers while working in a factory, up to his elbows in it unprotected, he was in college, he died at 74..I am going to follow in your footsteps and try to help others get info and my Fathers memory..take care
Lori Moose,,,well loved daughter of Richard " Dick" Moose Leicester ny

Sara Huizenga said...

Lori, I'm so sorry to hear this - it truly does break my heart. I was so wishing and praying that your Dad's journey through the hell of aml would end differently than mine.

His diagnosis sounds so very similar to my Dad's as well!

We so must find a cure for this vicious disease - I have made a contact for doing so on Facebook ... it's called Jeffrey's Voice.

Please keep in touch - I would love to follow your blog for your Dad and connect more - if you ever need someone to talk to about, I'm here ... xoxo

I'm also on Facebook if you want to "friend me up" there too ...;) "sarahuizenga"

Praying for all of you fervently ...

Anonymous said...

Thanks Sara ! xo