AML Remission Plan

Hi, I'll keep your family in my prayers! My best friend just found out her 10 year old has AML. I am trying to find out what color the leukemia awareness ribbon is. I found 1 sight that said orange and one that said green. Can you please help me? Thank you

franmuso said:

hi, my prayers are with you and your daughter, it is very hard on you both i am sure. i was diagnosed with aml last august and have received 3 rounds of chemo which have all lasted in a full remission, which appears to be the name of the game with aml. because i am 60, they are doing another round of chemo, radiation and a stem cell transplant from my little brother this week. i don't know about the plan, but i do know that if it goes out of remission that things will become difficult. love to you and your family.

I can see that these posts are pretty old, but for those who have come here searching for answers, let me tell you what I have learned FIRST HAND as a 5 YEAR AML SURVIVOR!

"Maintenance Chemo," also referred to as "consolidation chemo," is an attempt to BLAST any potential dormant remnants of your leukemia into oblivion so that they can never cause you to come "out of" remission.

After a near-death encounter with AML and subsequent remission from the disease, I was told that the "chemo fun" had just begun, and I was scheduled for Four week-long IV bursts of chemo. They were scheduled to begin after I had sufficient time (3-4 weeks) out of the hospital and had regained some of my strength.

The good news is that, depending upon your age and severity of illness, the consolidation rounds should be easier for you to tolerate. Unlike ten years ago, there are some really OUTSTANDING anti-nausea drugs and while everyone is different, the horror stories you might have heard about non-stop vomitting are history. I was even able to maintain a pretty normal appetite during the treatments. They ran in one-week chunks at the end of each month. Many hospitals will require you to stay put during treatment, due to potential neurological side-affects of the chemo drugs.

Now, the only real drawback to consolidation chemo is the complete loss of white bloodcells with which to fight off illnesses. I was suscptible and CAUGHT every bug that came down the pike, and they did land me back in the hospital three times (usually for no more than a few days), so keep in mind that this is a part of the risk you run, even if you are being given injected products like Neupogen. It's a long row to hoe. And chemo will DRAIN your energy reserves, but I am here tonight (five years later) with doctors who are using the OTHER "C" word -- CURE. You can do it too. Have faith in your health care pros. Get spiritually connected (however you choose to do that), and SURROUND yourself with POSITIVE people who can make you laugh.

Know that I am praying for you, just as thousands did for me.

Jaycee

jayceejay said:

I can see that these posts are pretty old, but for those who have come here searching for answers, let me tell you what I have learned FIRST HAND as a 5 YEAR AML SURVIVOR!

"Maintenance Chemo," also referred to as "consolidation chemo," is an attempt to BLAST any potential dormant remnants of your leukemia into oblivion so that they can never cause you to come "out of" remission.

After a near-death encounter with AML and subsequent remission from the disease, I was told that the "chemo fun" had just begun, and I was scheduled for Four week-long IV bursts of chemo. They were scheduled to begin after I had sufficient time (3-4 weeks) out of the hospital and had regained some of my strength.

The good news is that, depending upon your age and severity of illness, the consolidation rounds should be easier for you to tolerate. Unlike ten years ago, there are some really OUTSTANDING anti-nausea drugs and while everyone is different, the horror stories you might have heard about non-stop vomitting are history. I was even able to maintain a pretty normal appetite during the treatments. They ran in one-week chunks at the end of each month. Many hospitals will require you to stay put during treatment, due to potential neurological side-affects of the chemo drugs.

Now, the only real drawback to consolidation chemo is the complete loss of white bloodcells with which to fight off illnesses. I was suscptible and CAUGHT every bug that came down the pike, and they did land me back in the hospital three times (usually for no more than a few days), so keep in mind that this is a part of the risk you run, even if you are being given injected products like Neupogen. It's a long row to hoe. And chemo will DRAIN your energy reserves, but I am here tonight (five years later) with doctors who are using the OTHER "C" word -- CURE. You can do it too. Have faith in your health care pros. Get spiritually connected (however you choose to do that), and SURROUND yourself with POSITIVE people who can make you laugh.

Know that I am praying for you, just as thousands did for me.

Jaycee

You sound very positive and that gives me hope. I was diagnosed with AML on March 18, 2009, and went into remission after my first induction chemotherapy. I am now in the hospital for my first consolidation chemo and am halfway through as of today. My doctor wants me to be evaluated for a stem cell transplant just in case, but so far I've done really well and that isn't a for sure thing, he just wants it there as an option. So you were cured of the disease without a stem cell transplant? It's all a little confusing to me still since it's kind of new. It's so great to hear that you are doing so well. I'd love to hear back from you. I feel like I need to talk to others who know what I'm going through... Lori

dawnweldon5 said:

Hi, I'll keep your family in my prayers! My best friend just found out her 10 year old has AML. I am trying to find out what color the leukemia awareness ribbon is. I found 1 sight that said orange and one that said green. Can you please help me? Thank you

leukemia awarness ribbon
i am a 23 yr. old cancer survivor of aml the ribbon color is orange.....is there anything else i can help you with....

jayceejay said:

I can see that these posts are pretty old, but for those who have come here searching for answers, let me tell you what I have learned FIRST HAND as a 5 YEAR AML SURVIVOR!

"Maintenance Chemo," also referred to as "consolidation chemo," is an attempt to BLAST any potential dormant remnants of your leukemia into oblivion so that they can never cause you to come "out of" remission.

After a near-death encounter with AML and subsequent remission from the disease, I was told that the "chemo fun" had just begun, and I was scheduled for Four week-long IV bursts of chemo. They were scheduled to begin after I had sufficient time (3-4 weeks) out of the hospital and had regained some of my strength.

The good news is that, depending upon your age and severity of illness, the consolidation rounds should be easier for you to tolerate. Unlike ten years ago, there are some really OUTSTANDING anti-nausea drugs and while everyone is different, the horror stories you might have heard about non-stop vomitting are history. I was even able to maintain a pretty normal appetite during the treatments. They ran in one-week chunks at the end of each month. Many hospitals will require you to stay put during treatment, due to potential neurological side-affects of the chemo drugs.

Now, the only real drawback to consolidation chemo is the complete loss of white bloodcells with which to fight off illnesses. I was suscptible and CAUGHT every bug that came down the pike, and they did land me back in the hospital three times (usually for no more than a few days), so keep in mind that this is a part of the risk you run, even if you are being given injected products like Neupogen. It's a long row to hoe. And chemo will DRAIN your energy reserves, but I am here tonight (five years later) with doctors who are using the OTHER "C" word -- CURE. You can do it too. Have faith in your health care pros. Get spiritually connected (however you choose to do that), and SURROUND yourself with POSITIVE people who can make you laugh.

Know that I am praying for you, just as thousands did for me.

Jaycee

in remission-5 years
hello jaycee, just wondering how old you were when you were diagnosed with leukemia, i am 44 years old and was recently on may 29, 2009 diagnosed, i am happy for you and i hope to be like you in 5 years from now

mauveb2k said:

in remission-5 years
hello jaycee, just wondering how old you were when you were diagnosed with leukemia, i am 44 years old and was recently on may 29, 2009 diagnosed, i am happy for you and i hope to be like you in 5 years from now

In Remission
My partner was diagnosed approxmiately the same time you were (he is 45). He was diagnosed on May 22nd. He had been feeling sick for a few months and kept going to the doctor. The doctor kept running blood test but kept missing that his platelet levels were low. He was suffering from a sinus infection and was about to have surgery to clear it up. On May 22nd we (I say we because I was with him throughout the entire period) were checked into the hospital. It was a big whirl wind. Luckily enough we live in Austin and the hospital as an oncology floor where he was able to receive his treatments. Unfortunately the first round of induction chemo didn't work. He had to go through another induction round but this time it was only 5/2. The second round of induction chemo was a horrible experience. He felt all of the side effects of the chemo. On day 33 we were allowed to go home even though he was still neutrapenic. Unfortunately we were back at the hospital 36 hours later. He spent a total of 40 days in the hospital.

I have to say I was able to get to know the nurses very well.

This past week we went to MD Anderson to have him evaluated for a bone marrow transplant. I have to say MD Anderson is a bit of a zoo; however, the transplant doctor as well as the entire team we met with were very professional and answered all of our questions. They never once had to go and research any answers. They definitely know what they are doing.

The type of AML my partner has/had is M4 with normal genetics. His oncologist states he falls under the intermediate category and is a type that doesn't have a definite answer whether he needs to have a transplant. We met with the MD Anderson team in case he does need a transplant. They are going to type his sister to see if she is a match and also start searching for a matched, unrelated donor.

He starts his maintenance chemo tomorrow.

Mauveb2K I responded under your post because you were diagnosed so closely to the time frame my partner was diagnosed. I'm sure everyone who has been touched by leukemia may relate to everyone's story. I wish you the best of luck on your road to recovery.


Jerry

HiLo said:

You sound very positive and that gives me hope. I was diagnosed with AML on March 18, 2009, and went into remission after my first induction chemotherapy. I am now in the hospital for my first consolidation chemo and am halfway through as of today. My doctor wants me to be evaluated for a stem cell transplant just in case, but so far I've done really well and that isn't a for sure thing, he just wants it there as an option. So you were cured of the disease without a stem cell transplant? It's all a little confusing to me still since it's kind of new. It's so great to hear that you are doing so well. I'd love to hear back from you. I feel like I need to talk to others who know what I'm going through... Lori

AML
Lori did you have the stemcell transplant.
I am schelduled for a transpland next week.What information can you give me?

jen79jones said:

last round of chemo
im getting cytradin in very high 1500 cc doses twice every other day for a week what did u get and im asking because im scared im getting to much oh i have aml and was diagnosed in december they say right now im in remission and that im not a canidate for a transplant my cancer cells are 1.5 i have been told by a different oncologist that what im given is to high and it could kill me im really confused should i not get my last round of chemo what do i do thank u jen

Your body breaking down medicine
I'm not sure if this is the same case or not, but my daughter (dx w/ALL) is taking 1.5 times the amount of medicine that she is supposed to be taking for her weight. The doctors did an analysis on her (not sure what the name of it is) that tells them how her body breaks down the medicines. It came to show that she breaks down the medicine more quickly than normal so her medicine is not as effective and keeps her counts high. So they went up on her dose of medicine so that it can be as effective as possible. They want to only give her as much as she can tolerate without making her counts drop too low, so the do take that into account also.

The other doctor may have said you're getting too much medicine because of your weight and vs a "normal" candidate. Make sure he does all of his research before making a diagnosis. But do your own research also so you can ask the relevant questions to get the answers you need to make an informed decision. Good luck!