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.
Have been a little absent the last couple of weeks, nothing bad... actually everything is going 1000% better than expect with Mum's treatment. Thank you everyone so far for your kind words and great advice
We have created a bubble for her to live in over the past 3 months, some may say an extreme one but it worked so why change it. We also never doubted she would not get better, and told the doctors we would prove them wrong.
So she has had Induction, BMB came back in remission (which doctors are shocked about but it was never doubted by us). 1st round of consolidation she got though again with no infections, no temperatures & just one small fainting episode (which I was never worried about as she has fainted a couple of times in her 65 years).
Just started round 2 consolidation, BMB can back again in remission... blood work came back at a good pace and looks nearly back to normal by the time round 2 started....
So my question is (and I like to be organised so I am jumping the gun a little) .... what should we expect when she finish's this 2nd and last round, our power of positive attitude says she will get through this without infection again :) (even though doctors say that's impossible)
What will most likely happen when she goes home ?
What is the routine for blood work / doctor visits ?
Is there any supplements that people take or food that helps with blood generation and healthy attitude ?
Basically we have taken this one round at a time, and yes we will have to discuss with doctors and dietions, but I have learnt so much for everyone here that just thought I would check on experiences.
thank you xx
We have created a bubble for her to live in over the past 3 months, some may say an extreme one but it worked so why change it. We also never doubted she would not get better, and told the doctors we would prove them wrong.
So she has had Induction, BMB came back in remission (which doctors are shocked about but it was never doubted by us). 1st round of consolidation she got though again with no infections, no temperatures & just one small fainting episode (which I was never worried about as she has fainted a couple of times in her 65 years).
Just started round 2 consolidation, BMB can back again in remission... blood work came back at a good pace and looks nearly back to normal by the time round 2 started....
So my question is (and I like to be organised so I am jumping the gun a little) .... what should we expect when she finish's this 2nd and last round, our power of positive attitude says she will get through this without infection again :) (even though doctors say that's impossible)
What will most likely happen when she goes home ?
What is the routine for blood work / doctor visits ?
Is there any supplements that people take or food that helps with blood generation and healthy attitude ?
Basically we have taken this one round at a time, and yes we will have to discuss with doctors and dietions, but I have learnt so much for everyone here that just thought I would check on experiences.
thank you xx
I am thrilled to hear this news. It is always a reason to celebrate when told you are in remission. Your mum is a very lucky woman indeed!
In terms of follow up, the folks who are chemo only are likely a better resource than me, but generally, there is weekly labs. It will take some time (several weeks) for counts to rebound. My physicians would tell me (and still tell me) that I know my body best and if something feels wrong, call don't wait for the next appointment. I still go for weekly blood work.
In terms of being home. There is really no place like home! I am a little over zealous with protecting my environment and invested in a few air cleaners, primarily used in my bedroom and my family room. I am very cautious about having visitors and I ask everyone if they feel like they are sick or have been around someone with a cold, to please just call and not visit. I also always carry a mask and gloves with me, so if I feel uncomfortable in a setting, I can mask myself -usually of I go shopping.
You are doing it right. Take it one round at a time. No need to jump ahead, though I wish I could follow my own advice.
I am so happy to hear this news!!
Peace, love and hope,
Andrea
One thing I have found is that the protocol for follow up post consolidation treatment differs from person to person depending on your haematologist approach.
I am a chemo only survivor (finished treatment november 2011) and live in Sydney.After my blood counts recovered from my final round of chemo I was put on quarterly visits with my haematologist with the only testing being blood works. I found it hard going from daily blood tests to quarterly blood tests but my doctor has the approach that quarterly is sufficient and that you need to get on with life.
He also does not beleive in invasive testing and the only bmb he ordered was the one i had at diagnosis and one at the end of induction that showed i had gone into remission.He believes that the blood works are sufficient and if they show something that is not normal then he will do bmb.
I have spoken to many others both in australia and other places and their follow up care has been very different.Some doctors put you on weekly,then fortnightly then monthly blood tests and visits for quite a while. Some doctors do quarterly bmb.
Talk to the doctors and see what their approach is
Lisa
I'm also chemo only. Finished treatment February 2012.
My doctor had me come weekly, then bi-weekly....monthly...bi-monthly and now, after 1.5 years it'll be every 3 months for the next year.
It's only simple bloodwork (last BMB was about 2 months post end of treatment).
It took me months to regain my stamina
I take no supplements, just try to eat well and exercise.
It's great to be home and in remission!!
Abby
What good news! Conratulations on the remission!
I think the routine is very individual. I went weekly for lab work for months after my last chemo. I saw the doc monthly. But my cell counts stayed very low and required weekly neupegen shots for several months. I had induction chemo and three consolidations. No transplant. I never once got an infection. I was neutopenic for most of the six months of my treatment and low white counts several months after treatment. So I know it is possible to go through it without an infection.
I am now a little over a year in remission. I still go in every two weeks for lab and see the doc quarterly. I just had a BMB this last May and it was clear.
That is a great plan to take this one round at a time. I had a hard time with that at first. I wanted so badly for someone to tell me what to expect. And no one could. I asked many times what diet I could go on to lesson the possibility of relapse. I was told there was nothing I could do. I didn't like that attitude one bit. But, I do eat well and take good care of myself. So at least if I do relapse, I will be strong and healthy enough to put up a good fight. I am 61, so I am pretty close to your Mom's age. And have no intentions of dying any time soon. :-)
lily
Like you all know every case is different and we have learnt that more as the time goes by with doctors and nurses that they are unable to tell us what the "normal" is.
We pretty much assumed what you are all telling us.... even though we should assume nothing LOL.
Also thought that the best way would be to just make sure she was strong and healthy, live her life but try and make sure she is strong if there is any relapse.
Looking forward to the end of round three and for her numbers to come back up and to a new appreciation of life :)
xx
First of all, if she is still neutropenic, then keep her in the bubble. But I would expect within 2-3 weeks of her last chemo her bone marrow will recover to the point where that will not be the case, and she can resume almost a normal life. I say almost because I expect she will get fatigued rather quickly -- this is just the residual effect of all that she has gone through. It took me several months before I kind of got over it -- but I will never again have my pre-chemo stamina, but hey, I am alive ... I can live with that.
They will probably start out with monthly, then go to quarterly, and then every six months (which is what I am on now) as far as check-ups are concerned. I am not on any medication at all except the thyroid stuff I started on a decade before AML, so it has nothing to do with the AML. So, not meds -- if they have her on some stuff -- heart stuff or whatever, as her blood numbers come up she should be able to get off of them. I would try to slowly get her off of anything they felt necessary in the hospital. Unless the med team sees are real good reason for something, that is.
Wow -- another survivor -- what great news!!! Please stay with us and continue to let us know how she is doing. -- dave
Dave, seems like they just send her home with one tablet like the gaps in between which seems to be an antibiotic, but a preventative rather than one you get when you have something.
Looking forward to her getting home and back into things slowly, she is very good knowing that she may feel tired at first and not to push herself, but that's great if she is just home and feeling better :)
We did get our BMB back today and none of us are a match, but the doctors don't even know if she will have to have one... they just do it as it takes a long time to have everything lined up if one of us was and we have to go this way :)