Hi Stacy
I have always enjoyed a very healthy life and before aml I had never been hospitalised. When all of a sudden I felt very tired- seemed like it came on out of nowhere- my aml progressed so rapidly that I ended up in an emergency ward hooked up with blood transfusions that went on for about 12 hours. I was admitted soon after and started chemo right away my oncologist told me I had a very high percentage of blasts - can't remember the number but it did seem very bleak at that point. However I responded very well to the first chemotherapy round and didn't have too many side effects. I went on with 3 more rounds of chemo and have been in remission ever since will be 2 years this November. Like your mom I was in good health to start so I think this helps a lot. I went from a very bad situation to feeling like myself again - it's definitely a very scary roller coaster ride and things can change quickly. Trust your doctors, ask a lot of questions and make sure your mom knows you are there for her. I have not had a bone marrow transplant just chemo for now. Will think of you

Hi Staycp

Welcome to the group you will find many helpful and carring people here. My son was 34 and finishing his 2nd year of residency at a hospital when his wife told me he was feeling sick. She forced him to go to the doctor who said it was a virus and would pass, the following week he is sicker so she makes him go back to the doctor who says its allergies and will pass.

While at work in the hospital he started getting that feeling in his stomach and went down to ER. They did an ultrasound and cbc. He had very high white numbers and very low platetts do the admitted him and started running more tests. It turned out that he had MDS/AML, went through induction chemo, 3 condolidation rounds and then a atem cell transplant at UC Davis last August.

If your mom is st Standford she is at an excellant facility who is very experienced in treating AML.

Hugs and prayers.

Karen

Her good health is going to help her get through this. I too was forced (thank god) to go the ER by my wife. Within a 1/2 hour I was told I had Leukemia, was admitted in the next hour and was getting chemo the next day. My transplant doc later told me that I was probably a few days from death.

It is a scary time, but lots of people have gotten through this. I know because I am one of them.

Some things she can do to get through it is keep eating and walking her laps around the hospital. And become a big "germofoid" with the mask, staying away from people, and following the diet the docs have given. Getting an infection or fever when her immune system is wiped out from the chemo is not good. She needs to do everything she can to avoid catching anything.

Prayers for you and your mom.

DaveJ

Staycp,

I am very sorry to hear about your mom. This is a tough process for sure, but there are many people here that are examples of success and vitality after AML.

I can't speak to exactly to your mom's prognosis as I don't have AML. I have a very rare chronic leukemia/MPN, but I am most likely going to BMT and the doctors have repeatedly told me that fitness and health prior to transplant is very important. This is in your mom's favor.

I am currently under Stanford's care presently. I live right up the road in San Mateo. PLEASE let us know if there is anything we can do to help. I can help with daily chores or yard work or grocery shopping. Just like it takes a village to rear a child, it takes a village to beat AML.

The only caveat is that my leukemia may necessitate a BMT at any time and we are doing weird drug combos that may change my energy level. But...for now I feel pretty good. Don't hesitate to ask and if I can't help I won't hesitate to decline. My wife is 9 years younger and has tons of energy!

My number is 8087836230. My wife and family would love to help you in this time of need.

V.r
John

Stacy -- so sorry to hear about your mom. I wonder why they seem to be constantly delaying her treatment. But as far as how I felt, it was terrible -- about like being out of my mind -- spacey I called it -- lightheaded might be a more technical terms. Lethargic -- no energy at all. Some people seem to just stumble into it with few symptoms, but it is probably better if there are symptoms that point to the problem. Hopefully your mom will get into treatment before much longer. It will be a while before she is feeling much better, but that is just part of chemo. We will be praying that her treatment works out well. -- daveB

I too was really sick when diagnosed. I was a healthy 42 year-old and what started with nausea and weakness, progressed and worstened for weeks until I was diagnosed.
From a strong healthy woman I slowly turned into someone so weak that I couldn't go up a flight of stairs. And after cooking an egg I needed to lay down.
The diagnosis took a while and once I was diagnosed, like many here - I was hospitalized the next day and on chemo 24/7 right away.
After my round of induction and a month in the hospital, I remember walking out feeling a LOT better than I felt when I was diagnosed. Despite the aggressive chemo, I wasn't nearly as weak or sick as I was before starting treatment.

Abby

I was sick for two months before I was able to get back home to see my family doctor who ordered blood work which then showed an elevated WBC. I don't know if it was fear that had gripped me or just the fact that the disease was intensifying but I felt like began to quickly deteriorate between diagnosis and starting treatment. I was doing so bad that my induction round didn't even make me nauseous. But now after seven rounds of chemotherapy, I can say that I am thankful to be here today. It's pretty crazy when you evaluate where you started and where you progressed to. The beginning is without a doubt the roughest part (the uncertainty, the rush of treatments, the feelings, etc.), but once the process levels out, things do begin to look up. Keep strong!

Abby

Its good to see you posting.

Karen

Hi Stacy.

My husband was 47 when he was diagnosed and was the last person you would think would get sick. We were actually on vacation when it hit him, it happened very fast. He was diagnosed at the ER in San Diego where they kept him overnight to get him strong enough to fly home. We went from the airport straight to the hospital and Chemo was started right away. He also had lost his vision due to bleeding behind his retinas and had a brain bleed which was causing his brain to swell. Within a few days of being admitted he could not breathe on his own. Brain surgery was performed while he was on chemo that same week. He was not expected to survive and I was advised to have any family and friends come to see him within 24 hours. Things were very dire.

Sharing that information was not to scare you, please know that no matter how bad things may seem, people do improve. My husband pulled through that week, had several rounds of chemo and then a bmt. He was back to work full time 4 months after his transplant and had not even hit the year mark of diagnosis. This month he hits the 18 month post transplant milestone and two years since being diagnosed and he is still going strong!

The coming days will have challenges, but we are here when you have questions, feeling scared, need a shoulder etc. Everyone here was so kind and gracious in helping me white knuckle some very dark times, I have no doubts that you will find the same comfort here.

My suggestions, as Dave advised, eat even if just a little, walk as much and as often throughout the day as possible, avoid sick people and in addition stay off the internet for medical information about leukemia. All it will do is scare you and most often it is outdated and inaccurate. Also write down questions you have as you think of them because when the doctors come in it can be easy to forget to ask them.

Stay hopeful, there are treatments that work for many. Wishing you, your mother and family strength and sending many blessings.

Colleen

Stacy,

The responses provided demonstrate how different everyone's journey is. I was 48 at dx and actually stair stepped for 20 minutes the morning of my bone marrow biopsy-I felt fabulous. In fact, my family had a cruise scheduled the following week and my hemo did not recommend I purchase trip insurance because I felt so well. The only reason my AML was caught was due to routine yearly blood work which showed semi low platelets 98 and very low neutrophils .02. My neutrophils were at this point for at least two months without any infection which is a miracle of God. My BMB returned with AML and I started induction chemo the next day. I had Induction and four rounds of consolidation chemo. I felt fabulous throughout teleworking fulltime after the first month. I have had an extremely blessed path. Praying your mother recovers soon.

Blessings,

Julie

Wow! I apologize for not getting back to anyone. I thought my email would notify me if someone responded and by chance I came here to see if anyone had since I haven't received emails.

Thank you everyone for your words. They help so much.

The latest update on mom:

She had her induction chemo and went straight into the ICU when it started because her oxygen wasn't staying up. She had some fluid on her lungs. She stayed in ICU for a week. That was brutal. They had her on dialysis too to help remove the fluid build up.

She went back to a regular room and started talking weird, seeing things, then became aggressive and delusional. Not a full week after she got back into a regular room, she coded and they had to intubate her, sedate her and put her in ICU again.

Her platelets nor hemoglobin are increasing, yet. They say it takes 2-3 weeks post induction for your body to start making them again so we are just waiting. Her white blood cells were hovering at 0.1 - yesterday they finally saw a tiny change - 0.2. They think her bone marrow may be making platelets but her body is still eating them up. Her spleen is enlarged so they suspect thats what is eating them up. They can't do surgery to remove her spleen because of the low platelets. So its just a matter of waiting to see who will win- the body or the spleen.

She is awake and coherent again now, still in ICU. It is 2 weeks post induction. This is a lot scarier than I imagined and I am grateful for this group. You all are wonderful with your info.

We don't live in the area of Stanford so we are having to stay in hotel rooms while she is in ICU. There isn't much for financial assistance or a break on that part, but its fine. My step dad stays with her during the week and we go up on the weekends, which hotels are much cheaper during the weekends.

Her hair finally fell out today, too. I crochet, so I'm making her a nice bamboo headband to wear (bamboo yarn is soft, antibacterial, and moisture wicking to keep her cool). Thank you all again for the advice and prayers.

I should say, they don't know why she coded. She just started gasping, then screamed, then her oxygen level declined rapidly. She does have blood in her lungs now and they think she may have popped some blood vessels in her lungs then her lungs filled up with blood from the low platelets. Its been 5 days since that happened and she is now breathing fine and resting in ICU.