Acute Myeloid Leukemia, My Mom

Tweety, BSN, RN · Nov 26, 2004

Leslie, I'm very sorry to hear this. Best wishes to you and your family.

Home Health Columnist / Guide · Nov 26, 2004

sending a {{{{{{{hug}}}}}} to you today to help you through the days ahead.

pulled some info together for you to discuss with your mom and her doctors:

overview:

national cancer institute - adult acute myeloid leukemia treatment

general information

advances in the treatment of adult acute myeloid leukemia (aml; also called acute nonlymphocytic leukemia or anll) have resulted in substantially improved complete remission rates.[1-5] treatment should be sufficiently aggressive to achieve complete remission because partial remission offers no substantial survival benefit. approximately 60% to 70% of adults with aml can be expected to attain complete remission status following appropriate induction therapy. more than 15% of adults with aml (about 25% of those who attain complete remission) can be expected to survive 3 or more years and may be cured. remission rates in adult aml are inversely related to age, with an expected remission rate of greater than 65% for those younger than 60 years of age. data suggest that once attained, duration of remission may be shorter in older patients. increased morbidity and mortality during induction appear to be directly related to age. other adverse prognostic factors include central nervous system involvement with leukemia, systemic infection at diagnosis, elevated white blood cell count (>100,000 per cubic millimeter), treatment-induced aml, and history of myelodysplastic syndrome. leukemias that express the progenitor cell antigen cd34 and/or the p-glycoprotein (mdr1 gene product) have an inferior outcome.[6-8] expression of the bcl-2 oncoprotein, which inhibits programmed cell death, has been shown to predict poor survival.[9]

http://imsdd.meb.uni-bonn.de/cancernet/101029.html

prognostic factors

http://www.cancer.org/docroot/cri/content/cri_2_4_3x_how_is_acute_myeloid_leukemia_aml_classified.asp?sitearea=

treatment + older adults:

http://www.leukemia.org/all_mat_detail.adp?item_id=3113&sort_order=9&cat_id=1209

expectations (prognosis):

complete remission occurs in 70% to 80% of patients. long-term survival achieved by curative therapy occurs in 20% to 30% of people. without treatment, life expectancy is about 3 to 4 months.

http://www.healthcentral.com/mhc/top/000542.cfm

sending you the power of allnurses to help you in the days ahead. we're here for you to vent anytime...

Energizer Bunny · Nov 26, 2004

((((((((((((((((((Leslie)))))))))))))))))))))) I am so, so sorry. Know that my heart is with you, my sweet adopted sister.

xoxoxoxox

leslie :-D · Nov 26, 2004

treatment + older adults:[/b]
http://www.leukemia.org/all_mat_detail.adp?item_id=3113&sort_order=9&cat_id=1209
.

karen,

thank you....i just came home from sitting with my mother through a blood transfusion; she's actually receiving 2 but i was not any comfort for her as i would just burst into tears so i left.

i did have the opportunity to speak with the oncologist who outright told me, given my mother's age (75); her comorbidities and pmh w/breast cancer, that if it was his mother, he would recommend hospice asap.

the problem being, my mom's husband is in such total denial combined with my mother's fear of dying, they will go through whatever may be recommended; the oncologist already told her that she may receive 1 chemo tx and would only temporarily put her in remission and wouldn't buy her much time.

so we will have to wait and see what john hopkins university says....and i will certainly try to be the professional nurse equipped with the appropriate questions and relay any information to our family...

when someone is not familiar with anything medical, denial is a strong deterrent in making realistic choices. and i'm not talking about hope either. i am being realistic.

whereas with my sister (42) even though the survival rate is 15%, i have much hope for her regardless of how she looks now.

it narrows down to age predicting the variable outcomes.

i just can't believe that i couldn't sit a few more hours with her and hold her hand while she finished her transfusions. i could not be strong for her....

truly, this is a first as i've always been known to appear as a hard-nosed biitch.

i thank everyone for their support and prayers. although words cannot express my appreciation, if you could only see the free flowing tears as i read your responses.

and as with my sister, i shall keep you updated.

with love and gratitude,

leslie xoxo

Home Health Columnist / Guide · Nov 26, 2004

"when someone is not familiar with anything medical, denial is a strong deterrent in making realistic choices"

Very profound statement.

Going through something similar with my mother who's 74 with end stage CHF/COPD. Mom's fear of agressive treatment "against her wishes" and loss of control despite having a leaving will since 1990 clearily stating DNR: no CPR, vents, dialysis, antiobiotics etc had her in a full blown panic attack when Hospice came to talk with my father and I. Despite what she always said she wanted, is refusing Hospice "not ready"

Mom's mentally deteriorated in past month so believes TV news is same broadcast from previous day. Unable to read romance novels or operate TV remote to change channels. Visited with her before and after our Thanksgiving meal (at my bothers apt upstairs). Before dinner suspicious that my brothers and I gathering to place a wedge between "her and her husband to drive them apart."

After dinner, asked how she liked the turkey and brocolli casserole..."only nibbled" on food plate prepared at her request. "How long can you live off your own flesh?" (meaning not eating). I replied, few weeks to a month. "That's what I thought". Tried to talk with her about meds and having RN visit once a week so dad can be supported if he's doing the right things for her, checking her lungs to see if too dry or wet. "Nope, everything is ok, thank you. We're doing just fine." When pushed by my dad, mom goes on rambling crying, you don't love me tirade that leaves my dad emotionally exhausted so he's giving up trying to get her accept caregivers, VN or Hospice. There is nothing I can really do for her at this time except to call daily and stop by weekly...IF she'll allow call/visit. I've had to step back and accept that what Mom will allow IS all I can do, and that being a daughter sure is hard sometimes.

We'll just have to hang in there together.....

leslie :-D · Nov 26, 2004

"when someone is not familiar with anything medical, denial is a strong deterrent in making realistic choices"
Very profound statement.
Going through something similar with my mother who's 74 with end stage CHF/COPD. Mom's fear of agressive treatment "against her wishes" and loss of control despite having a leaving will since 1990 clearily stating DNR: no CPR, vents, dialysis, antiobiotics etc had her in a full blown panic attack when Hospice came to talk with my father and I. Despite what she always said she wanted, is refusing Hospice "not ready"
Mom's mentally deteriorated in past month so believes TV news is same broadcast from previous day. Unable to read romance novels or operate TV remote to change channels. Visited with her before and after our Thanksgiving meal (at my bothers apt upstairs). Before dinner suspicious that my brothers and I gathering to place a wedge between "her and her husband to drive them apart."
After dinner, asked how she liked the turkey and brocolli casserole..."only nibbled" on food plate prepared at her request. "How long can you live off your own flesh?" (meaning not eating). I replied, few weeks to a month. "That's what I thought". Tried to talk with her about meds and having RN visit once a week so dad can be supported if he's doing the right things for her, checking her lungs to see if too dry or wet. "Nope, everything is ok, thank you. We're doing just fine." When pushed by my dad, mom goes on rambling crying, you don't love me tirade that leaves my dad emotionally exhausted so he's giving up trying to get her accept caregivers, VN or Hospice. There is nothing I can really do for her at this time except to call daily and stop by weekly...IF she'll allow call/visit. I've had to step back and accept that what Mom will allow IS all I can do, and that being a daughter sure is hard sometimes.
We'll just have to hang in there together.....

i really empathize with your situation karen.

self-will supercedes any and all previous directives.

i've been a hospice nurse for almost 9 yrs now.

i can think of only 2 or 3 that fought til the very end.

other than that, i witness an intangible 'energy' or spirit that takes over and all falls into place, the acceptance and/or the beginning of the transitional phase from here to 'there'.

even if our moms reject the idea of hospice, i think that even getting a script for morphine (without using the 'h' word) will bring much comfort physically as well as mentally, as we both know that morphine changes a pt's perception of everything, not just pain.

it's going to be one long struggle after another with many dynamics and opinions involved.

but i already have the name of my mom's oncologist at john hopkins and once mom consents to me speaking with her onc, i will strongly encourage him to

prescribe morphine for her, with him telling her that it will help her dry cough.

maybe that's something you can try with your mother? with end stage copd/chf, morphine would be a most appropriate intervention and you could definitely educate her on its' uses, and is not synonymous with death.

too many fallacies about this drug.

yes, we will hang in this together....(((((with much sympathy))))

leslie

globalRN · Nov 27, 2004

Hello:

I work in hem/onc with patients who have acute leukemias.

I have to agree with your Mom's oncologist: if she is 75 and has a PMH of breast cancer and comorbidities: palliative care would be my choice.

Why:

1) patients >65yrs old with AML have a poor prognosis with very short remissions and poor longterm survival rates ; the chemo can kill you too.

2) patients with breast cancer who go on to develop secondary AML have a very chemo-resistant type of leukemia(difficult to kill)

3) if she has comorbidities: the treatment for AML can be very toxic. If her heart is in poor shape(poor LVEF), poor renal or liver function...chemo may not be an option. You may kill the cancer cells but you will surely kill the patient too.

I hope that helps...

If she insists on chemo, then that is still her choice...however many patients

do choose not to and choose instead to spend the time they have with their loved ones.

I hope this helps.

to all onc nurses
most of you know about my sister lisa struggling to survive her breast ca and has now to start her rad txs.
yesterday i found out my mother was diagnosed with AML...she went to the doctor for a persistent dry cough, xray neg...did blood work and her wbcs were in the 50k's...repeated tests 3-4 times. hct around 28. don't know too much except they tried to aspirate bone marrow with both hips being dry. they got a tiny sample but don't know if it will be enough for cytology.
the elderly do not receive the typical chemo rx's, if they receive any at all.
from what i've read everywhere, the prognosis is quite poor.
somewhere i read that a dry cough is or can be symptomatic of aml.
any onc nurses at all, please tell me what you know. i am a seeker of the truth and want to know if anyone has had experiences with this cancer in the elderly (she's 75).
good or bad, i am just looking for straightforward information because from what i'm reading, the survival is a few months from the time of dx.
please do not hold back...i really want to know and am sick to death of reading abstracts.
also, i don't want to waste any time in getting her hospice services but won't know anything til next week. i'll be taking frequent trips to John Hopkins and need to be with her, as death has always been one of her greatest fears...
please and again, tell me what you've seen and know...
many thanks,
leslie

leslie :-D · Nov 27, 2004

this is exactly what i have been reading; about the resistance and the short-lived remissions and the cytotoxicity...

i truly appreciate your candor as i too was told with her breast ca, there would be much resistance to any chemo, never mind her age and other medical factors.

sometimes one thinks you're reading too much into something but your response vindicated everything i've read particularly re: elderly with remarkable pmh's and previous ca's.

hospice is certainly something i won't recommend; will leave that to the oncologist....if he recommends it at all.

not that it matters...my mother is going to fight this to the end and the only thing i can pray for is her acceptance at the end.

it's one of the most gut-wrenching acts to witness, when one does not accept their terminality, and that is my biggest concern....

thanks again global.

leslie xo

chris_at_lucas_RN, RN · Nov 27, 2004

Hey, leslie....

Recalling the stages of grief (including one's own anticipatory grief), it sure sounds like your Mom fighting her illness puts her right on track. How blessed she is to have a daughter like you, not just because you are in the field, but because your experience has made you wise in these ways.

With you in spirit, my friend.

xo2u2