Cancer Survivors Network - AML Leukemia - Comments

My Son has AML in Hospital Now

merritt2011 — Sat, 12 Nov 2011 16:17:19 -0500

My son was dignosed with AML on sept 2 he spent 28 days in the hospital. He has just had his 1st of 4 chem treatments. He is also back in the hosptial with fever. He has also got these really bad bumps on his face that are infected. Just don't know what to do for him. When he feels good he wants to do things. Really hard for me to try to keep him down.

Not sure where you are

TanyaC97 — Thu, 08 Sep 2011 13:33:13 -0400

Not sure where you are located, but I would recommend getting a second opinion. Dana Farber is top, I am sure there are other places. My prognosis is good, but I still got a second opinion.

AML after bone marrow transplant

ive3devils — Tue, 30 Aug 2011 15:17:58 -0400

So my daughters transplant did not work they say her leukemia is progressing and decided to do an outpatient chemo (only inpatient). The first 2 rounds of chemo (aggressive) her chromosomes rejected so why would they give her a lower dose chemo. They said they were trying what they could to give her quality of life. What does that mean? HELP!!!! I am confused and don't understand. They also stated they would not do a 2nd bone marrow. Now she is in for a cat scan for labored breathing?

AML after bone marrow transplant

ive3devils — Wed, 17 Aug 2011 16:25:17 -0400

Hi my daughter was diagnosed with AML she is 24. she had 2 aggressive chemo rounds and the cancer was still in her blood and bone. They did a bone marrow translant and it was just about the 100th day since the transplant and they told her it was back in her blood and bone. They took her off immune meds and are going to "see" if she can fight it if not they will do chemo (outpatient) again. Well she spent 4 months in hospital and her chromosomes were resistent to chemo (im no dr. but that is not good) Can she have another transplant. She is tired and said "it is what it is" they told me less than 50 percent chance of survival. Well I being her mom am not buying it. I say go to Dana Farber with situation for a second opinion. Does anyone know the odds or if second transplant is an option ? Thank you

AML after bone marrow transplant

ive3devils — Wed, 17 Aug 2011 16:25:15 -0400

first induction failure

Cancerfather — Sun, 24 Jul 2011 18:28:04 -0400

My daughter just was told her first induction failed. How is your brother doing. I am totally down

first induction failure

Cancerfather — Sun, 24 Jul 2011 18:22:33 -0400

My 48 year old daughter just had a failure of first induction for AML. She will start a second in a week or so. I, too, would like to know if anyone has survived after a course like this. I feel horrible

My brother

Lolly29 — Mon, 30 May 2011 00:50:14 -0400

My brother was diagnosed with AML on March 28, 2011 . His first round of chemo brought him close BUT not in remission. He is undergoing stronger chemo now. Does he have a shot at remission this time around? He had so many side effects last time...i shudder to think what this might bring ( almost operated on bowel, fungal infection, hallucinations from anti-fungal medicine, etc.) Are there people out there who went in to remission the 2nd time around? He was given the news that there is a "donor" for bone marrow with 10/10 markers.

RE: AML Leukemia

sheena141 — Tue, 14 Dec 2010 15:22:09 -0500

WOW!!! A 7 year survivor....I can't wait to be able to say that!!! I believe that after 5 years you are "cured". I am only at 7 months and love to hear success stories.

Did you have a stem cell transplant? How old were you when you were diagnosed?

Told me the same thing

Crystollina — Mon, 13 Dec 2010 04:17:59 -0500

I am a APL survior. I had a bone marrow transplant from an unknown donor when I was 17yrs old may 31st 2002... One of my many hematology/oncology doctors told me that they fried my ovaries so he doubts I can have any children of my own... Was horrible... I just wanted to cry... I had full body radiation and chemo... I'm not married but engaged and its hard for me to talk about it with my fiance because its to hurtful to talk about... I'm not sure if I can and my doctors aren't either... I guess I just have to pray and wait it out... I'm 25 yrs old now... I just pray that the lord gives me Miracle babies as he did for you! :'o(

Hey Sonja, Have you tried

Keri Black — Fri, 13 Aug 2010 19:32:29 -0400

Hey Sonja,
Have you tried lyrica? My brother has alot of chronic pain as well and the lyrica didn't take all the pain away but did take the edge off. It worth a try...hope it works for you!

Heather McClanahan

Linda Cooper — Sat, 24 Jul 2010 13:06:30 -0400

July 24,2010,My daughter, Heather, is 39 and has had AML since Jan of 09. She had her transplant in June of09. She stayed in remission for 80 days. Then we had to go home. She was at Vandie Hospital in Nashville, Tenn. We live in Townsend, Tenn. So this was a long and sad trip home. Since then she has been taking Vidasha,chemo. We came back to Vandi, July 18. They had to take her port out because of an infection in it. She is still running some fever though. She is thinking about taking the chemo, flag. She wants to get back in remission to have another transplant. We pray all the time that God will see fit to heal her here I know she will be healed if he takes her to Heaven. Her 2 boys need,and her family and friends do too. Please pray for her. Her Mom and Caregiver MY e-mail is grankayc@att.net

I am a long term survivor

choirgirl120 — Wed, 26 May 2010 03:54:53 -0400

My name is Cindie. I am 31 years old. I was diagnosed with AML on June 14, 1988 when I was 9 years old. I received a bonemarrow transplant from my brother who was 17 at the time. I developed graft vs. host disease and still have difficulties to this day.

I had four rounds of chemo and then a full week of full body radiation (three times a day). I have had health issuses that have been assumed to be related to the radiation and chemo: like appendectomy, gall bladder removed, frequant kidney infections and type II DM(with no family history). My doctor today associates it with my body being "zapped" and pretty much killing off all the small body parts. I have a echocardiogram done anually and try to do things to keep my immune system up.

I do have three MIRACLE babies, 10, 5 and 3. I was told at the age of 9 I would never have children due to sterilization, so I prepared my self and then my husband (later) that I would adopt. That would be ok with me. But I am glad they were wrong:)

I am now an OB nurse, love to read and spend time with my family. AML was part of my life, NOT my life. I look forward to many more years ahead!!

I Love discussing my medical history and would try and answer any questions you might have. Or just need to talk. My Email is Choirgirl120@hotmail.com

hi sonja, my mom was

clairmccormack — Tue, 18 May 2010 20:29:56 -0400

hi sonja, my mom was diagnosed with AML leukemia in April. She is still in the hospital and had a VRE bacteria from her port and then now has pneumonia and a blood clot in her arm. We are waiting for her white counts and neutrophil count to rise. How long did it take you for your counts to go up after chemo? How old are you as well? I'm just curious and trying to find someone who has a similar situation for some comfort. thanks

I was diagnosed with AML M2

mtbikernate — Mon, 26 Apr 2010 14:51:53 -0400

I was diagnosed with AML M2 with an 8:21 translocation in March 2009 and was declared in remission in April 2009. I've been in remission for a full year now.

I got 9mos of full chemo on the FLAG protocol (fludarabine, cytarabine, and mylotarg). I got all but my last treatment as an inpatient and had VERY minimal side-effects during that time. I lost some of my hair, but that was mostly it. I did not have any nausea until my last full treatment as an outpatient. I attribute that to two things. First, fluids. As an inpatient, I had an IV drip 24hrs/day. As an outpatient, I couldn't drink enough. Also, as an inpatient, I received IV Zofran (antinausea drug). I did not receive that as an outpatient.

I did get an infection (sepsis of a staph bacterium when I was in the hospital getting a transfusion...my temp hit 108 and I was hospitalized for 10 days, but received IV antibiotics daily for 3 weeks), but we're fairly sure I actually got it in the hospital because a nurse didn't scrub my central line port well enough with alcohol. My wife and I were EXTREMELY careful and she keeps the house as clean as a hospital (she's a veterinarian, so is well aware of proper cleanliness standards), which has kept me from having other problems.

I did have some trouble with 'rhoids at one point, but they cleared up with some OTC treatments the nurses at the hospital recommended to me.

My only other trouble was a spot under one of my toenails. Right now, I'm not entirely sure what it was. The doctor doing rounds the day I was getting my chemo said it looked like an infection and told me to see a podiatrist. I did that, and the idiot thought I was ingrown and needed to be cut that day (even though my counts were rather low at the moment). I wouldn't let him do that, so he suggested I do soaks in warm, soapy water. That cleared up the "infection" but there was still a spot of blood under the nail that would periodically ooze for awhile. 6 months later, it's no longer oozing, and it looks like it's healing. I have no idea what the spot is, but I'm glad it's getting better so I can wear sandals again.

Now, I'm off the study protocol and my oncologist wants to treat me on a sporadic basis for the next year, pointing out that the longer AML patients get treatment, the longer they are likely to be long-term survivors. The stuff he's giving me now (Phiveracycline? I have no idea how to spell the stuff, but that's what it sounds like when he says it) made me quite sick the last time I got it. He gave me an oral Zofran prescription this time around. I just got my first dose of three today, so we'll see how well it works.

AML Leukemia

ballen3 — Sat, 06 Oct 2001 15:08:17 -0400

Would like to talk to some one with aml, especially if in the San antonio, TX area. I was diagnosed with aml 1 Dec 00 and had 3 chemo treatments. Presently am in remission.
Bobby Sllen