Aml-kidneys, heart effects

my mom being 89 has been receiving Vidaza for her AML since this spring (07). According to her oncologist her cbc is normal and he has given her a 2 month break from this form of chemo and she hasn’t needed a transfusion either. However, she has become so weak as to be nearly bedridden and altho cognizant in the morning by mid day she is mentally in a fog and very sleepy. Her MD is planning on starting another 7 day course of Vidaza a week from tomorrow.
We as her family are thinking of seeing a cardiologist and not proceeding with the chemo. She has problems with fluid retention and chest congestion alternating with dehydration. Her BP is normal but her heart rate is irreg and seems to me she could use some home o2…just a guess.
Is anyone familiar with end stage AML? Her Dr. discreetly avoids talking plainly with us. It is all the more difficult as altho we her children have made many visits to give care and schedule services we all live hours away and my father at 90 isn’t up to the haggling that seems necessary w/ this dr.
I would appreciate reading anyone’s experience to better judge the time we have left and the appropriate medical proactive steps to be taken.

i am new to this group and notice this message was from 2007. i am so sorry to see no responses had been sent to you. i am not sure of where you and your family are in this fight for your mother.
my mother died on mar 6, 2007. she was 80, and my best friend. we fought a mylodysplastic condition for 3 yrs, befor it turned to aml. she was diafnosed in november of 2006 and died 4 months later.
doctors don’t like to spell it out for you, i know because i was just like you. i just needed to know what to expect and what to look for. i was with her when she died, but frankly it came so quickly i just did not see it comming.
i would like to think your mother is still with you, but experience tells me she is not. i am so truly sorry i did not see your post until now. we could of been a great help to each other. there should be a place we can go that lets us know what the stages of this condition are, and what to expect.
if you are still in need of someone to talk to , i will check back on this site.

        my name is clare.

Hi Clare…my name is Jenny and I have a 26 year old daughter with AML. She was DX in May 08. It is so hard. I am so sorry to hear of the loss of your Mom:( My Mom died of Kidney Cancer 11-06-04 and it still hard.

hi jenny,

 i was surprised to see a response. i was not sure anyone was checking this site, since the last replies are dated 2007.
thank you for your kind reply. any of the mylodysplastic disorders are very debilitating, and when it morphs into aml, things happen quickly. my mother was 80, and there is nothing we could do for her other than palliative care, because of her age.  your daughter is young and at least can look into bone marrow transplantation or some of the new chemo drugs out there.  i am sure you have looked into this.

there are so many options when you are as young as your daughter. i will keep her in my prayers, and also you. i know how hard it is for those of us who love them. i felt helpless most of the time, but did my best to keep up on the new treatments . i was always on the web,looking for “a cure”.
i wish you , your daughter, and your family all the best in your your journey through this .
sincerely, clare

Hi Jenny,
How’s your daughter doing? I haven’t spoken with you in a while and I was just wondering how her treatment is going. Where is she now? Have they found a donor for her yet?
Please tell Tiff my prayers are with her. Write back when you get a chance.

----- Original Message -----
Sent: Tuesday, November 04, 2008 5:42 PM
Subject: Re: [aml] aml-kidneys, heart effects

Thanks! I will add her website to my favorites. Take care and do keep in touch. I will be praying that they will find a perfect match, yet if they don’t then I will trust that perhaps God has a grander healing planned.
----- Original Message -----
Sent: Thursday, November 06, 2008 3:45 PM
Subject: Re: [aml] aml-kidneys, heart effects


thanks for the reply. She is young and that is what the Doc keeps saying. We are hopeful but it is hard. I will post her update right behind this post. For the last 6 months I have look and looked for a support group but have yet to find one that actually talks. I do check in her occasionally but rarely see anything:(

Teresa I was so happy to see post from you. I just checked your Caring Bridge Page and saw your wonderful news. Tiffani and I are keeping our eye on you:)

Now as far as Tiff I am not sure when we last talked but I am thinking August and a lot has happened yet we are no closer than we were then:(

Early September we found out tht there is not a single Donor for her on the registry. Family members were not “good” matches. We discussed stem cell transplant but he does not think it will work for her because she is not a small person. Option 2 was to do nothing but she would die in the near future. Option 3 and what she choose is to go a new type of transplant based off of another new transplant that is doing well(but not for people with Tiffanis issues) It goes like this…Chemo to kill off the cells, infuse a half matched related Donors bone Marrow follwed by more chemo to kill off the more agresssive body attacking cells. To date this has not been done. It is a study being done by Johns Hopkins and Northside Hospital. She would be the first. Ok so while we were waiting to get the tests back on the family members he ordered another round of Chemo to keep her in remission. She was inpatient for 56 days came home and two days later had a fever. So back she goes. They could not pinpoint the infection and she was feeling worse, then came the lesions all over her body. She was transferred to ICU for a few days and the Infectious disease Doc was called in. They thought maybe it was the PICC so out it came. She was hysterical being poked numerous times a day and tow IVS going that caused her pain. They went thru a LOT of Antibiotics mentioned TB and scared us all to death. She started getting better out of ICU and about a week later came home(they inserted a new PICC three days after removing the first one) It turns out she has an ATypical Bacterium something or the other. Something that only someone with no immune system would pick up and it will never completely go away. So now she cannot have Chemo or a transplant until they can get it tottaly under control. She saw the Infectious Doc last week and he said he needed to sit down with her Oncologist. Saw the Oncologist this week and he said he really had planned for the transplant to be over by now:( He said he needs to talk to the Infectious Doc…ugh. Bottom Line is she now has two things that could kill her and we are just waiting for the infection to go away and to top it off last week at the Infusion Center they pulled her PICC again thinking it may be infected:( Turns out it wasn’t but they are not going to put anything in until she really needs it. Her numbers are currently recovered so she hasn’t needed and Infusion in a couple of weeks. The good news for today is she is at home feeling fairly well and spending time with the family. Ok that was long. You can check her out on Caring bridge too her site name is tiffanisstory.

Talk to you soon:)