Acute Myelogenous Leukemia (AML) Support Group

I feel your pain and will be keeping you and your Mom in my prayers, I've actually researched this a bit due to my own Father who also has AML.

Here's some of what I found, I hope it might be helpful to you...
http://papamore.blogspot.com/2009/...

Vidaza(R) May Provide Alternative Treatment for Elderly Patients with AML
http://www.ufscc.ufl.edu/Patient/c...

http://media-newswire.com/release_...
Older AML Patients Show Promising Response In Drug Study COLUMBUS, Ohio th Older patients with acute myeloid leukemia (AML) who were once told that nothing could be done for them are finding new hope th and life th through a clinical trial at The Ohio State University Comprehensive Cancer Center th James Cancer Hospital and Solove Research Institute. Preliminary findings of the phase II study suggest that older, previously untreated AML patients can achieve complete remission at a higher than expected rate when treated with the drug decitabine using a novel dosing schedule.

Great Links, AML, alternative treatments, etc.

http://www.apjohncancerinstitute.o...

http://www.cancercenter.com/acute_...

http://www.oasisofhope.com/ (in Mexico)

http://in.answers.yahoo.com/questi...

http://www.lifepositive.com/Body/b...

http://www.cancure.org/index.htm

http://www.cancure.org/directory_c...(directory of clinics)

Hi Peace4missing:

Thank you for sharing your insight with me. I apologize for not responding sooner. I've been busy with mom and the appointments and trying to understand medicare and medicaid. It's all sort of overwhelming.

I'll take a look at the links we will keep your father in our prayers as well.

Hi Patches,
My Mom was diagnosed with AML at age 76. She decided not to have any treatment. She was also given three months time.
She lived only 3 weeks. The first week was very emotional for me and I was very mad that she would not accept treatment. I just sucked it up and went to her side. I laid in bed with her, gave her morphine when she needed, rubbed her back, gave her ice chips and talked to her. My Dad stayed by her side and the both of us made her as comfortable as possible. The days went by too fast but I thank God everyday that I was there by her side and that she didn't have to suffer very long. The best thing that I did was to call Hospice. They helped me through everything. My Dad was devastated and could not handle much at the time so he stayed at her side 24 hours and I took care of both of them and the paperwork, arrangements, coordination of care etc...as well as my 4 year old.
I just made her as comfortable as possible, we talked when we could, laughed when we could and I told her that it was OK and that we would be OK. She was ready and she knew when it was her time to go, we didn't, but somehow she did. Our last words were "I love you" and I will be forever grateful that we had the chance to say them. She died the week before Christmas 4 years ago and every year I put a butterfly ornament on our tree in memory of my Mom.
Your Mom needs you with her and you need her. God Bless you.

I'm sure it's already been covered in some of those awesomeness links--- but I was sitting in blood draw last Thursday and read the COOLEST article about epigenetics and what that may mean for AML and other leukemia treatments. They even touched base on a couple of trials that sounded promising so I am keeping my fingers crossed!!

Hi Patches, your mom mirrors my mom. She was diagnosed not quite 2 weeks ago and we have already gone from 3month expectancy to just weeks, my mom was not a canidate for chemo because she had already gone through it 2 yrs ago for non-hodg-lymph. we thought we were in the clear with that and now this. She did not want to go through chemo again. we just contacted hospice today and they try to answer all they can but no one can really tell us what to expect and when. I will say a prayer for your mom too.

Hi Alliecat67:

I apologize for not responding sooner. I've been really busy trying to get everything in order for my mom. My god there is so much to learn, greatly overwhelming.

I am so sorry for your loss, and I can completely relate with what you have gone through, not all of it. Not sure I'm ready for all of it, but my siblings and I are preparing. I think it's just now actually hitting my brothers and sisters as to how serious this is.

I can't begin to fathom her being gone yet, just taking in day by day. My prayers are with you and your family.

If you just need to talk or vent or cry please feel free to contact me. If nothing else we can help each other through this.

My mom is doing well right now, holding her own. Thank God for that.

That's about all I can update right now.

Again I am praying for you.

God Bless

Hi Niddysmom:

Boy our situations do mirror don't they?

I am so sorry for the downgrade in your moms situation. It can be devastating. 3 weeks, I am so sorry. I encourage you to spend as much time with her as you can. I talk with my mom alot, we talk about the old days. Memories, and we talk about what she wants at the end. Both are difficult, but I know it must be done.

My mom is adament about no chemo, I know it will be difficult to watch her fade away, always thinking in the back of mind "what if". But, like you I will support what she wants, so here I am.

It's great you have brought hospice in, we aren't in that stage yet, she does have home health care. And Tiffany (her nurse) that comes to see her is great. She treats my mom just like she is her own. We just love her. And she has helped us with everything. It will help to ease some of your frustrations. Don't be afraid to ask questions, they are there to help.

My prayers are with you as well. As I said earlier prayers have done wonders for my mom thus far. And I'm here if you need to talk.

God Bless.

Thank you for the hug, Patches :)This group has been very quiet and I have been wondering how everyone is doing? But I also know how precious time is, and one doesn't get much of it to just let one's brain go into neutral; or to share with others who are going through the same things when caring for a loved one. Hang in there!

When I originally wrote about palliative or supportive care in the thread "To Treat or Not to Treat". I was a bit anxious that it might be misconstrued. I am so glad now that I did ask the question so that we could talk about what its like for those for whom more chemo is not an option or choice. It's so sad that we sometimes wonder if palliative/hospice care is perhaps 'second best' to more chemo! As if someone who can't have chemo, or choses not to, is being 'cheated' or 'loosing out' on something! There is a link on Peace4missing's reply and her website to the Journal of Palliative Medicine (can't remember the exact title as I write) which you and others might find interesting and encouraging. I'm sorry my husband and I didn't reap the benefits of this area of medicine - it might not have stopped the cancer or given us that much more time together, but it would have helped us to have more confidence in my husband's original wish to die at home or hospice. In the end it is all about quality of life and respecting the wishes of the person who is facing the reality of human mortality. It is the ones who are left behind who experience the heartache and terrible feeling of loss - but that too begins to heal, more surely than a cure for AML is at that stage.
A big hug to you too, and strength :)