Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
I saw my doctor this morning; all is going well. All numbers look good. I'm feeling well. My next, and, I hope, last chemo session will begin June 16. We had to find a way to fit it in my increasingly busy summer schedule, though of course I want to get this over as soon as possible and then go wild maybe.
Of all her recent leukemia patients I'm the only one who doesn't need BMT, probably because of the NPM-1, which I guess is relatively rare.
Tomorrow is Relay for Life in my town. I'll be going though not as part of any fund-raising team. They have a victory lap for survivors and also one for caregivers, which would be my wife.
Speaking of whom does anyone have any good ideas for something really nice to do for her? She has been marvelous in all this, not panicking (at least outwardly), taking me to the hospital, visiting every day, giving me neupogen shots, flushing my PICC line, wrapping it every morning for my shower, etc.
Steve
Of all her recent leukemia patients I'm the only one who doesn't need BMT, probably because of the NPM-1, which I guess is relatively rare.
Tomorrow is Relay for Life in my town. I'll be going though not as part of any fund-raising team. They have a victory lap for survivors and also one for caregivers, which would be my wife.
Speaking of whom does anyone have any good ideas for something really nice to do for her? She has been marvelous in all this, not panicking (at least outwardly), taking me to the hospital, visiting every day, giving me neupogen shots, flushing my PICC line, wrapping it every morning for my shower, etc.
Steve
It is great to hear that you are doing so well! Hope things continue along those lines, and that you will enjoy a wonderful time at the Relay for Life.
Robin
Good for you with all that energy. I'll bet the only thing she wants is your health. My husband simply loves when I am doing ok and he can relax. As a woman, jewelry always works for me, but you staying positive and upbeat will be the greatest gift of all.
Peace,
Andrea
Very happy to hear of your successful treatment. I don't think the NPM1 mutation is all that rare but many times it's coupled with FLT3 which negates its benefit.
Isn't it great to have a supportive wife? Mine has been a rock as well, keeping it all together while I was basically useless, always staying level headed and keeping to daily routine as much as possible so as not to let this disease run our family's life.
With my treatment I still need to be smart about avoiding crowds and people who appear to be sick, so I can't go on a plane quite yet. My wife likes to take short little Carribean vacations just to get away from it all and be pampered for a couple of days. I insisted she plan a trip and take one of the kids as company so a few weeks ago I sent her and my daughter on a 4 day trip to Puerto Rico with a copy of "50 Shades of Grey". She didn't have to worry about my medicine, my doctor's appointments, cooking and cleaning in between her work shifts, fighting with insurance companies - you get the picture. If she's the travel type maybe you could consider that. And maybe with your treatment you will be able to go with her.
Whatever you decide I'm sure she will be thrilled.
Take care and good luck,
Lou
Can I give you Jimmy's phone number? What a lucky wife you have.
Margaret
When I was finally in survivor mode I wrote out a thank-you note for the people at our church ... but I had to have the preacher read it -- no way I could have made it thru after being away from them for about 9 months. He even teared up a bit. But within that note I said there was not way I could say all the good things that people had done, and especially the prayers. But I did make one exception and put a few lines in about how my wife had stood by me in all of my messy ordeal and had provided the care without which it would have been an impossible ordeal.
Well, nuff said -- please let us know how it goes. -- dave
First off, good to hear things are going well!
I was also NPM1, and as mentioned here, it has to be coupled with being flt3 negative and having normal karyotype in order not to go the BMT route at diagnosis. I too didn't need BMT and had only chemo.
My husband was amazing. I felt and still feel enormous gratitude. I told him and continue to tell him.
A few months after treatment we went away together without the kids and I believe that this trip, and being well enough to do it, was the best gift.
Good luck on your last round!
Abby
You have already done it. YOu have battled like a champ and it's clear you appreciate her. She is lucky indeed. My only advice is when you get back to some routine and normal living, maybe a gift a day for a month (no matter how small) I did that for my Fiance who is now my wife and is back at my side as I battle again.
Ed
I also had a great and supportive husband, sometimes over involved so he got even more stressed than me :) and since weve been married for almost 20 years, I know him quite well. And I insisted that he continue with his life, I sent him to the gym, I insisted on continuing his church attending, I tried to be not too demanding.... and I told him how important he was for me, how important his attitude had been (HAS BEEN, in fact) for my recovery. That's what he needed because that's him.
My suggestion is: you know your wife, you know the little and not little things that make her happy. It can be jewelry, a card, a trip.... I would include a card like Dave says, no matter what your choice is.
As a woman, I rather a little trip, of..... MONEY to spend the way I want. Yes ! Not romantic, at all. But sometimes I have "strange" guilty pleasures as my husband says, and which he doesnt understan. I love home-improvement. Love interior decoration. Hubby dont care about it and cant imagine what I want. So.... I rather money to spend it the way I want.
Not romantic at all. I agree. What I mean is: you know your wife, try to imagine, and if it is diffucult for you, try to talk to a close friend of her or a relative to help you.
Blessings,
Shimauta
I'm happy to read that you're doing well. A gift for your wife? A really big hug. Your being healthy and beating AML is the greatest gift you can give to her. A caretaker once myself, the greatest gifts were when my daddy was doing well. I'm sure your wife feels the same. Best to you.
In all this I seem to have fared far better than many AML patients. This began back last October when I started not feeling well, and it was diagnosed as AML in December, after which chemo began. I have not needed as of yet BMT or SCT. That's part of the luck, if you will, of having the NPM-1 gene.
Of course, that can change, and I can relapse. I hope that doesn't happen. And I will continue to give encouragement to everyone else walking this path. I know many of you have been on the path for much longer than I have and have suffered far more. Perhaps I feel a little guilt here; perhaps I haven't been on the path as long and acquired as much experience and wisdom as the rest of you. I hope I can keep learning from you all as the journey continues to unfold. You've certainly taught me much so far.
First of all congratulations on finishing your treatment and maintaining remission.I too am a chemo only survivor.I finished my treatment in November 2011 and am still in remission. I visit my haematologist once every 3 months for blood tests.
Never feel guilty for the road you have travelled. Each of us have had a different experience with AML and none of us know what our future holds.
Live life and enjoy every day.
Whilst I was going through treatment I promised myself that I would travel Back to Greece (my fathers place of birth) with my father (aged 85). Well in 5 days time I will full fill that dream.
Lisa
Don't forget many who come to this site do not post comments but are reading to learn and trying to find hope and understanding. Stories like Lisa's and Dave's give immense hope to those that have chemo only. There are probably many others too that have not continued to post but I am so grateful to those that do even after life gets back to 'normal '.
Enjoy this time as you recover, rejoice in getting well and cherish your loved ones.
Nicole
I too have had chemo only. And have been in remission for over a year. I always love hearing about someone staying in remission with chemo only. I sometimes get a little nervous about not getting a BMT. Like maybe they are not doing enough to keep it away. So it is encouraging to hear about you, Dave, Lisa and others that are maintaining remission with chemo only.
Congratulations on completing your treatment!
Lisa, I hope you have a wonderful trip to Greece with your Dad. How exciting to full fill that dream.
Blessings,
lily