The Leukemia & Lymphoma Society - Fighting Blood Cancers
23 Replies Last post: Sep 4, 2010 6:12 PM by momto22009   1 2 Previous Next
momto22009   34 posts since
Jul 15, 2010
Currently Being Moderated

Jul 25, 2010 11:09 PM

New member, parent with AML, treatment and diagnosis  questions

I've been reading posts on this forum over the last two days. I look forward to getting to know the members here, learning from each other, and offering support.

 

My father is in his 80s. He was diagnosed with AML last week.  He is going to see a dr for a 2nd opinion . He has low white blood cell, red blood cell and platelet counts.  His health is excellent other than this new, unexpected diagnosis.

 

My dad's oncologist mentioned that leukemia cells were not noted in his peripheral blood smear. Does anyone know the significance of that? I'll check with the dr at the next appointment but thought someone here might know.

 

The oncologist was unsure if the subtype was M4 or M5. Is it necessary to determine subtype before starting treatment?

 

I've read some encouraging posts about Vidaza on this forum.  If anyone has input, please share.

 

Have any of the older members here undergone aggressive treatment?  If my dad chooses aggressive inpatient treatment, will visitors be allowed when his neutrophil counts are low? Will he be confined to his hospital room for the entire stay?

 

Thank you in advance for anything you are willing to share.

bettf   57 posts since
May 22, 2010
Currently Being Moderated
1. Jul 15, 2010 10:37 PM in response to: momto22009
Re: New member, parent with AML, treatment and diagnosis  questions

I can't answer all your questions, but i'm sure others will, and you''ll find great support and information here.

My husband, who just turned 80, was diagnosed with AML in May, and started aggressive  (traditional) chemo a week later. Visitors were allowed the whole time-- the week of chemo was fine, but the side effects (fever,rash,mouth sores, chemobrain, fatigue, etc) kicked in  week later. Subtypes didn't matter in the decision to have agressive chemo -- .what mattered was that his health was good enough for him to tolerate intense chemo.

Unfortunately the chemo didn't improve his bone marrow enough to be considered remission,so I transferred him from the community hospital where he got the chemo to a major medicaI center, almost as major asSloan-Kettering. He was in  hospitals 5 weeks total, including a week in rehab to build up his strength before coming home.

 

His current oncologist  says Vidaza is one option but only about half of "elderly" AML patients respond at all to it. He felt the best option was a clinical trial with tosedostat  (see http://clinicaltrials.gov/ct2/show/NCT00780598) and if that doesn't work we'll try Vidaza.. He's getting another bone marrow test Tues. to see if the AML has progressed or the chemo has helped it, and he starts the clinical trial on th 27th.

 

Good luck to you and your father, this is the beginning of a long road with many twists and turns. I've found the info on this site, especially from willowbayfarm, to be a godsend, and I'm happyf to offer you any help I can.

Bett.

 

 


bettf   57 posts since
May 22, 2010
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2. Jul 15, 2010 10:39 PM in response to: bettf
Re: New member, parent with AML, treatment and diagnosis  questions

Also, you'll find a discussion about an 85 yr old with AML and vidaza here:

http://community.lls.org/message/34773#34773

willowbayfarm   1,234 posts since
Apr 12, 2009
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4. Jul 16, 2010 12:10 AM in response to: momto22009
Re: New member, parent with AML, treatment and diagnosis  questions

Hi Momto,

Welcome, sorry you needed to join us here!  If he's going to Sloan Kettering, I'm assuming he's in the NY area and I believe there is a Dr. Gail Roboz in NY - she is at Weill Cornell I believe.  Anyway, she has been touted as an expert in elderly AML, so might be one to consult with.  Just a thought.  I've listened to a couple webcasts she's participated in, and the woman strikes me as being sharp as a tack, yet very compassionate and caring.

The blasts not being detected in his peripheral blood is a positive thing, I would think - meaning the leukemia blasts are confined to the marrow at this point and not spilling over into the bloodstream.  I'm no doctor, of course.  Do you know what the blast percentage from his bone marrow biopsy was?  The subtype of leukemia will guide the doctors to some extent as to his treatment; however, in the beginning treatment is fairly standard.  Although we do see deviations from the standard induction treatment in the case of co-morbidities like heart disease, diabetes, liver/kidney issues, blood pressure issues and the like. 

If you haven't done so already, you might do a search of this site using the terms AML and elderly and see what you come up with.  We have seen older patients go through the standard induction treatment, some handle it better than others, but you see that in the younger patients as well.  He can have visitors while he's in the neutropenic phase of treatment (when his blood counts, especially his WBC, are low) as long as they are not sick and observe the hygiene protocols.  I was able to walk the halls with a face mask so long as I stayed away from any rooms that contained a patient with an infection (designated in my hospital with a yellow cart outside the room).  Some days my walking area was a bit restricted!  The sight of a child also caused me to do a 180, since children are more or less walking germ factories, the little dears.  They gave me a pretty nice private room, though - it wasn't so bad.

Sorry your Dad is dealing with this.  I hope I answered your questions, and if you have more, you know where to find us!  Best wishes.

- WBF

willowbayfarm   1,234 posts since
Apr 12, 2009
Currently Being Moderated
5. Jul 16, 2010 1:41 AM in response to: momto22009
Re: New member, parent with AML, treatment and diagnosis  questions

Just saw your other question - standard induction chemo normally consists of idarubicin or her sister, daunorubicin, administered 24 hours a day for 3 days plus cytarabine (Ara-C) 24 hours a day for 7 days...the so-called 3+7 regimen.  I had idarubicin, but daunorubicin is a frequent choice.  I blame Ida for making my hair fall out - the rubicin girls are serious chemo, great at knocking leukemia blasts out of the park.  So he will receive both daunorubicin (or idarubicin) and cytarabine together if they choose to have him do the standard 3+7 induction chemo.

Hope that helps.

- WBF

Tex   5,690 posts since
Apr 3, 2009
Currently Being Moderated
6. Jul 16, 2010 12:12 PM in response to: momto22009
Re: New member, parent with AML, treatment and diagnosis  questions

I concur with what WBF wrote.  The final word will be your dad's doc so there can always be variations.  I do agree that the lack of cells ub the bloodstream is a good thing.  I don't think the difference between m4 and m5 would slow down the treatment timing.  But there might be some variations.  And, sometimes, it's hard to tell what the subtype is beause both forms of the disease exist.

 

Most doctors seem to be focusing more on the cytogenics reports than FAB subtype these days, anyway.  The 'n numbers' are, perhaps, more useful in describing the disease to the patient.  Again, your dad's doc is the expert on this.

 

I'm sorry your family, especially your dad, are having to go through this.  I hope this works out well.

 

Blessings

bettf   57 posts since
May 22, 2010
Currently Being Moderated
7. Jul 16, 2010 8:47 PM in response to: momto22009
Re: New member, parent with AML, treatment and diagnosis  questions

Momto - as mentioned by others, those two drugs are not experimental but are used in the standard (aggressive) chemo. Since that chemo didn't do much for my husband except give him terrible side effects we were offered a clinical trial with an experimental drug called tosedostat:

http://www.clinicaltrialssearch.org/safety-and-anti-disease-activity-of-oral-tosedostat-chr-2797-in-elderly-subjects-with-refractory-or-relapsed-aml-nct00780598.html

 

That site also lists other clinical trials and where they are available.

You should ask the dr. what clinical trials your father might be eligible for. Let us know.

Bett

willowbayfarm   1,234 posts since
Apr 12, 2009
Currently Being Moderated
11. Jul 17, 2010 1:26 AM in response to: momto22009
Re: New member, parent with AML, treatment and diagnosis  questions

Hi Momto,

I don't think testing for flt3 and the others is routine, but it is becoming more common.  Normally they will do another BMB around day 14 (if we consider day 1 to be the first day of induction chemo); sometimes they wait until day 21.  You could ask for them to check at that point to see if those abnormalities exist.

48% blasts in the marrow is certainly less than some we've seen, so I'm hopeful that they've caught it early and can get it eradicated before it gains too much of a foothold.  I had 65% blasts in my marrow at diagnosis. 

Did they give your Dad a date to start treatment? 

- WBF

willowbayfarm   1,234 posts since
Apr 12, 2009
Currently Being Moderated
13. Jul 17, 2010 1:55 AM in response to: momto22009
Re: New member, parent with AML, treatment and diagnosis  questions

Because AML tends to be aggressive, they usually don't mess around.  I had my BMB on a Wed., was called back in Thursday at noon to receive my diagnosis, allowed to go home and pack, and presented myself at the hospital Friday at 8 am.  I was hooked up and receiving chemo Friday afternoon.  AML generally gives a person emergency status, more or less.  My doctor said, "I know you have a life, so I'm going to allow you to go home today and make whatever arrangements you need to so you can be in the hospital for a month.  If it wasn't for that, I'd put you in the hospital right now and you'd start chemo today".

Things happen quickly in the AML world, it can be quite a whirlwind. 

- WBF

Tex   5,690 posts since
Apr 3, 2009
Currently Being Moderated
14. Jul 17, 2010 10:32 AM in response to: momto22009
Re: New member, parent with AML, treatment and diagnosis  questions

Wish I had an answer for you.  I don't know if those tests were ever run on me.  I had normal cytos, too.

 

I have read a few times that someone wasn't tested for the flt3 but I'm not even sure I've heard of the other two.  The whole genetics thing didn't apply to me, so I didn't bother confusing the matter by learning about them.

 

Blessings

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