howdy, new here

mtbikernate · Regular Joined: 08 Feb 2010 Posts: 19 Location: E.TX

Hi all. I am currently an AML survivor in East Texas. I got diagnosed March 10 and was released from the hospital in remission on April 10. I spent 18 of those days in a medically-induced coma. I went through 7 full rounds of chemo, finishing in November. I also got a round of intrathecal chemo in April.

brainman · Posted: Mon Feb 08, 2010 11:49 am Post subject: Re: howdy, new here

Hi mtbikernate. Glad that you joined but sad that you have AML. I copied your post to the leukemia forum so that others with leukemias can reply.

I know a little about AML since my father died of it a few years ago (2007). His problem was that the original biopsy was negative for cancer. They basically diagnosed him by ruling out everything else... including removing his spleen. The second biopsy (1 year after the first) was positive. During all of this time, I moved in with him and became his primary care provider. I remember going to the hospital for his chemo and blood transfusions.

Let us know more about your experience with AML.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile

mtbikernate · Regular Joined: 08 Feb 2010 Posts: 19 Location: E.TX

I was (and still am) a unique case. I had been fighting a bout with the flu for awhile. I can't remember when it first started. It felt a lot like allergies at first. I couldn't shake it, and people eventually started saying I looked sickly. Went to the doctor, and they agreed that it looked like flu, but didn't feel like further tests at that point were worth it (swine flu had not popped up yet). Told me to keep doing what I was doing and to come back if no improvement. Well, after no improvement in a week or two, I went back.

They took some blood for tests upon that visit. My doc was on vacation at the time, and another doc was supposed to review my results. Said doc reviewed my results, decided he didn't want to be involved, and put them back on the desk for my doctor to get home from vacation. 2 days later, my doctor called and told me to get to the ER NOW. They hooked me up to fluids and IIRC a transfusion, and then they took a bone marrow biopsy. I got the diagnosis and they shipped me to Houston the next day. That's where my memory falters and I go by what other people have told me.

I was in a regular room for a couple days until I got up one night to go to the bathroom and collapsed on the floor. My wife demanded a brain MRI (thinking I had hit my head...and she's a doctor herself, albeit the veterinary type, she still knows a few things). They found severe brain stem edema, and opted to put me into a coma. While in the coma, I ended up having kidney and liver failure. The doctors had no idea what caused the brain stem swelling, and still don't. I was getting workups from an entire team of infectious disease doctors in addition to the oncology team working on me. In the end, they decided to give me chemo before the swelling resolved in case the edema was because the leukemia had made it to my brain.

I was also on antibiotics, antivirals, and antifungals. Whatever they did, or in spite of what they did, the swelling cleared. A couple rounds of dialysis cleared the kidney failure. And they managed to get the liver failure under control. We're pretty sure all that was caused by the cancer. We're suspicious that the brain stem swelling was also from the cancer, because I had it in my eyes, too (when I awoke, I noticed a severe loss of vision, saw an opthamologist on an emergency basis, and was told that I had leukemic infiltrates in my retinas). My eyesight resolved to what it was before I got sick as I got chemotherapy treatments. Thank goodness.

Because of my time in a coma (and the rest of the time I was stuck in the bed), I had severe muscle atrophy all over. I couldn't do much of anything. I had a tracheostomy a couple days before the doctors brought me out of the coma, and that had me on a liquid diet for awhile. It took a lot of tests and practice before I was allowed to resume a solid diet. It took even longer before I could sit up on my own, and longer before I could stand or even walk. I only got enough PT to get me standing/walking. There was talk of getting me to do more PT, but since my counts were off, my oncologist did not want me in the dirty gym.

I was put on the FLAG protocol to test 2yr survival. I got mostly cytarabine and fludarabine, but I also got some mylotarg and gemtusiab(sp?). I got neupogen and neulasta to boost my white cells, too. Side effects were pretty minimal. I was surprised by that, but I eventually learned why (through experience). Most of my chemo was done as an inpatient with me on IV fluids 24hrs for the entire 3 or 4 days of my chemo treatment. The fluids kept the side effects at bay. My last chemo was 2 days, and done as an outpatient. With fewer fluids, I started feeling the very sour side effects. I ended up losing about half my hair early in my treatments. But when I got sepsis about halfway through (after which, my intervals between treatments lengthened), my hair began growing back.

At some point in April before I was released from the hospital initially, I went into remission. I don't know the exact date because there was no single day where all of a sudden I was in remission. At first, a nurse said something about it. The next day it was another nurse. The doctor didn't actually tell me I was in remission for a few days. As a result, I just say I was in remission on April 10, the day I was released.

I had an MRI this past Thursday, and my brain stem was clear. There was something there, but the radiologist thinks it's the result of something being treated. I also got a bone marrow biopsy, and preliminary tests show that it is clean, also.

brainman · Posted: Tue Feb 09, 2010 3:20 am Post subject: Re: howdy, new here

What an amazing and inspiring story! Although it was not easy (to say the least), it sounds like it was worth it. When I was first diagnosed, I was put on chemo that also made my life miserable. I was on it for 13mo. The year after I finished, I turned 40. Of course, all my friends joked about me being "over the hill." I told them that I did not mind being 40. What I minded was that I felt someone owed me a year! In hindsight, I think of those 13 months and think: "I have lived 17+ years since then. Not a bad return on my 'investment'." I hope you can say the same Wink

_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile

mtbikernate · Regular Joined: 08 Feb 2010 Posts: 19 Location: E.TX

[quote="brainman"]What an amazing and inspiring story! Although it was not easy (to say the least), it sounds like it was worth it. When I was first diagnosed, I was put on chemo that also made my life miserable. I was on it for 13mo. The year after I finished, I turned 40. Of course, all my friends joked about me being "over the hill." I told them that I did not mind being 40. What I minded was that I felt someone owed me a year! In hindsight, I think of those 13 months and think: "I have lived 17+ years since then. Not a bad return on my 'investment'." I hope you can say the same Wink

[/quote]

My chemo treatments didn't make me miserable in the slightest. One bout of vomiting that was done in a couple minutes after my final treatment of 7 full ones (I may be getting some maintenance chemo this spring). I consider myself VERY fortunate for that.

I was just locked away for several months because my counts were so low. Got myself an HDTV setup to bide my time...lol

ChemoMan · Posted: Thu Feb 11, 2010 3:03 am Post subject: Re: howdy, new here

Hi mtbikernate

Thanks for the story Very Happy

There a lot of info in there Exclamation

There are a lot of people who survive this and I have a feeling you are going to be one of them Very Happy

I am currently reading your blog...so far it looks great. I have a personal interest in this as I have a mate who has just started chemo for L. Thanks for your input, it would be great if you stuck around here to lend a hand , but don't let me pressure you into it, its your decision to make Very Happy

Good luck and keep us updated.
_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

mtbikernate · Regular Joined: 08 Feb 2010 Posts: 19 Location: E.TX

[quote="ChemoMan"]Hi mtbikernate

Thanks for the story Very Happy

There a lot of info in there Exclamation

There are a lot of people who survive this and I have a feeling you are going to be one of them Very Happy

I am currently reading your blog...so far it looks great. I have a personal interest in this as I have a mate who has just started chemo for L. Thanks for your input, it would be great if you stuck around here to lend a hand , but don't let me pressure you into it, its your decision to make Very Happy

Good luck and keep us updated.[/quote]

Thanks for the encouragement. Yes, indeed my history was insane. I probably forgot a lot.

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