I am a South African. Give som background and current situation - wonder how this compares to treatment in USA
Was diagnosed and treated for Hodgkins at 20. treated with MOPPS. The Hodgkins went into remission with Chemo, re-occurred again at 24 and again at 27 , the 30 - also had ABVD. At 33 was diagnosed with t-AML. First chemo brought about remission, at 36 re-occured whilst pregnant (8mths)with my first child had BMT. Remission achieved .At 42 AML back - pallative treatment only and spontaneous remission.
Now 50 and saw Oncologist 19 June. Came home and found this site. There is nothing like it here. In all the time I have been treated NEVER heard discussions about treatments, test result or anything - we tend to just accept what the doctors do and say. They were very surprised when I asked for results and at first didnt want to give to me.
Test Results - all of which means nothing to me, as I have never bothered with this before - doing my utmost to figure it out but pretty confused right now.
Neutrophils Relative 0.38.0%
Neutrophils Absolute 14.1
Lymphocytes Relative 12.80%
Lymphocytes Absolute 3.7
Monocytes Relative 7.30%
Monocytes Absolute 1.3
Myelocytes Relative 9%
Myelocytes Absolute 3.3
Bands Relative 5%
Bands Absolute 1.8
Blast Cells Relative 22%
Blast Cells Absolute 8.2
Smudge Cells Relative 13%
Smudge Cells Absolute 4.8
Treatment so far: Platelets Allopurino 300mg 1 x daily ;Cipro 250mg 2x daily 7 days; Hydrea 500mg 3xday
Supposed to have CBC 27June and if good apparently starting something called
LKAMLCYT (not quite sure what it stands for but is cytrabine)
which means I must give myself subcut injection (they will show me how) 2 x a day(12hrs) into thigh or abdomen for 10 days
then CBC then 28 days later start again
Any comments and suggestions would be appreciated
My mother had AML and was treated by a very competent and experienced hematologist, Dr. Robert Jacobson, MD, FACP, at Palm Beach Cancer Institute in West Palm Beach Florida. Dr. Jacobson has over 40 years of experience and earned his medical degree from the University of Witwatersrand Medical School in Johannesburg, South Africa, in 1966. He completed his residency in internal medicine at Sinai Hospital of Baltimore, Maryland, and hematology fellowship at Georgetown University Hospital, Washington, D.C.
Dr. Jacobson then joined the faculty of Georgetown University in 1976 and was a professor of medicine and pathology. In 1994, he left Washington to join the Palm Beach Cancer Institute.
You may want to have your physician contact Dr. Jacobson to discuss your case.
Not sure what t-AML is as opposed to AML. I'm guessing it has something to do with the t-cells but that's a differentiation no one ever made with me.
My Lord, I'm amazed at what you've been through. I'm curious about your being put into palliative care last time around. The spontaneous remission? Very lucky. Just to make sure the terms mean the same, by palliative care you mean they were just going to make you comfortable until you went into Hospice? That's pretty much what it means here, no attempt at cure.
If we're on the same page with that, then let me make sure I understand the rest correctly. They are treating you this time?
You've got a hell f a case and a heck of a history with this stuff. Typically we're put into induction therapy here for our first induction. That's usually a course of seven days of 24/7 cytabarine (Ara-C) with three doses of one of the rubicins added during the first three days. That's enough for some people but more and more of us it seems are needing a bone marrow transplant to finally get "cured."
I hope there's some information you're looking for in this reply. Please don't hesitate to refocus me if I didn't address your concerns.
I will tell you, I'm really impressed with the fighter inside you. You've kicked this stuff's butt before and I think you'll do it again.
Thanks Tex and Mona
I will tell my Doctor about Dr Jacobson. t-AML is apparently an AML caused by previous exposure to Chemo in my case MOPPS. Palliative care means the same thing here as it does there. I think they are giving me some form of treatment because the spontaneous remission confused them so they think there is a chance, given that I have been in remission for 9yrs .Don't know if its good or bad but seeing same Oncologist and Hematologist that treated me from time of second Hodgkin s relapse at 27.
What I understand about this protocol called LKAMLCYT is it is more palliative than curative and that worries me, but I have no knowledge at all on other options available to discuss with the confidence with my doctors. Will talk to them about the induction therapy you describe Tex but what is rubicins? The public health care system in South Africa is not great and as we do not have medical aid, private medical care is not an ongoing possibility - I suspect that is the main reason they have chosen an out-patient option - as in the wards nursing care and facilities are poor (they run out of sheets for beds, IV's etc).
Also tried to ask what the test results meant but quickly got "shut down" with a I am too busy type of attitude. Having searched the web I think I understand why - there appears to be so much information and so much seems contradictory - having looked through past discussions realized that you guys seemed to have some insight at what it means and maybe more importantly to identify trends - if I am going to ask for copies of test results it would be good to understand what markers I need to look for (good and bad) so that I can ask intelligent questions about my treatment . Your help here would be appreciated.
Finding it harder this time to stay positive, and the extreme fatigue and battling to breathe is making it difficult to do the one thing that keepss me sane and gives me joy, hope and a sense of achievement - ride my horses!. Thanks for your encouragement Tex about kicking it again but have to admit at this stage I am wondering if my luck is running out, perhaps that is why I am looking to be more actively involved.
Around here we don't talk about positive attitudes, we talk about staying determined. How you're feeling right now is completely reasonable and I'm sure many of us get to a similar stage. I've not faced what you're facing by any means but I know how the long fight can wear a body down.
By "the rubicins" I meant one of a collection of chemos that end with "rubicin." There's daunorubucin and idarubicin and another I can't remember the name of at the moment. I usually call them the Rubicin sisters. Bet that would have confused you even more.
I'm going to do something I haven't done in a long time and recommend you get a hold of Dr Fred Applebaum in Seattle. He's often willing to consult with patients on a long distance and e-mail basis. It does sound like you need an expert on your side. You can find his e-mail address at fhcrc.org or seattlecca.org.
He might be able to offer you some insight and suggestions. He'll certainly be open with you and share information. I hope he's not already too swamped but it's worth a try.
Oh, and be wary when researching on the 'net. There is a lot of misinformation outdated information and just bad information out there.