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Acute Promyelocytic Leukemia

kpiper
Posts: 1
Joined: Jun 2003

Newly diagnosed. Looking for others to share there experiences.

mc2001
Posts: 344
Joined: May 2003

Hi There,
Sorry to hear about your diagnosis. My name is Michael, and I am a leukemia survivor of ALL Pre-B cell. This is a great place to meet caring people who enjoy helping one another. The chat room is pretty good place for that. My email address is :
leu_lym@yahoo.com
and my leukemia and lymphoma website is:
www.geocities.com/leukemia_lymphoma
Take care, and God bless.
-Michael

renteria_54845
Posts: 1
Joined: Jul 2003

how old were you when you had leukemia/

csr1
Posts: 1
Joined: Jan 2004

Dear mia_54845, My name is michael and i was 38 when i was told i had acute promyelocytic leukemia. I am now 44 and in oct of last year i had my 5 year post transplant and still goin strong. I have just signed on to this web sight so if you would like to chat e-mail me here at csr1 or on my other e-mail site mjsoto1959@sbcglobal.net hope to hear from you sonn, take care michael.

CarpeDMgirl
Posts: 1
Joined: Aug 2003

Hello, K.
My husband was diagnosed with AMLm3 in August 2002. Just wanted to say hello and wish you well.
God Bless,
D.

djoury
Posts: 1
Joined: Sep 2003

Hello,
My name is David. I was diagnosed with APML in November 2001. Thank God I am in total remmission now. I found the first month in hospital to be the most difficult. Chemo was hard, however, things got better and better as my blood count returned. After the initial chemo dose (one month in Hospital) I went through two sessions of Arsenc (one and a half months as an outpatient). Hang in there, have faith and god willing you will beat it. PS. I placed my ski boots in my hospital room as a reminder of the good times. That helped a lot.
Take care and best regards.
David
You can email me at djoury@xenel.com

blondie37
Posts: 2
Joined: Jun 2004

My name is Dina, I was just recently diagnosed with APML in December of 03. I spent the first month in the hospital as well. I was in remission after that, but did 3 more treatments to insure that it does not come back. I am now being told by my doctor that he wants me to take a chemo pill everyday and a shot once a week for 1 1/2 years to bring down the percentage from 30% to 6% that this will not come back. I hate doing this, but was told that this is a new protocal for this leukemia.

Brooke1011
Posts: 1
Joined: Aug 2004

Hello everyone. My name is Brooke and my father was diagnosed in Feb. 01 with APL at 51. We live in Chicago area and have been blessed to have one of the top two Dr's in the country for this rare form of leukemia. You name it, he has done it. Multiple chemo's, arsenic, stemcell transplant with his own cells etc. He had also had multiple relapses which is can be fairly uncommon. He had been in remission again since last year until July 04 when he began to have seizures and APL was detected in his spinal fluid (this is the first time it has ever appeared here and it currently is not in his bloodstream he has had Mylotarg every few months as "maintence" treatment to try and prevent another relapse and there is not much history with its use with inactive leukemia). After two Chemo's failed to treat cells in his spinal fluid (also fairly uncommon that would happen) he began radiation last week. In two weeks we find out what kind of time we could have left with him and if the radiation is working. The good news is he feels relatively fine and is even attending work daily after treatment. Please, if anyone would like to talk, has any APL questions, wants to share experiences, don't hesitate to email me @ PreppieBlonde@aol.com. I remember how especially hard this was to deal with in the beginning and having no one to really talk to about it made it even more devastating.
*Brooke

blondie37
Posts: 2
Joined: Jun 2004

My name is Dina, I was just recently diagnosed with APML in December of 03. I spent the first month in the hospital as well. I was in remission after that, but did 3 more treatments to insure that it does not come back. I am now being told by my doctor that he wants me to take a chemo pill everyday and a shot once a week for 1 1/2 years to bring down the percentage from 30% to 6% that this will not come back. I hate doing this, but was told that this is a new protocal for this leukemia.

JudyAnnetta
Posts: 2
Joined: Jun 2011

HI, I have apl and was diagnosed in August 2010. I have had all the IV chemo and am now on 3 chemo pills for 10 more months. How are you doing?

kavi2906
Posts: 12
Joined: Jul 2011

Hi Judy, I are u doing now. we can connect as u r also one amongst the recently diagnoised cases.Pls message me

April123
Posts: 3
Joined: Nov 2003

Hi,
My father battled a six months with acute lymphosic leukemia but i do know of your type of leukemia although he did'nt survive leukemia i know if you have enough strength,courage, and hope you will get through this tough trial you are facing.If you ever just want to talk my email address is www.goonts@aol.com.I will prayer and keep you in my thoughts always.
April

moondancer830
Posts: 13
Joined: Jan 2004

Hello! I am a survivor of ANLL and I just wanted you to know that survival is possible-

I'm 17 and my ANLL was prompted by experimental chemo used to treat a tumor under my arm when I was three. In dec 95 I recieved a bone marrow transplant to treat my ANLL. 8 years and I am cancer free!!!!!!

make sure you have a support circle and a good sence of humor- laughter is everything!

If you'd like to talk more, have ANY questions, would like to vent, whatever... feel free to contact me! I just discovered this place and if I would have had this when I was sick it would have helped so much. Let your friends and family know about this place too.

I wish you the best of luck- you are in my prayers.

ONE DAY AT A TIME.

jskaluba
Posts: 1
Joined: Jan 2004

Hi, I am 18 months since diagnosis of apl. I have been in complete remission about 10 months. Right now I take no medication & my PCR test is completely negative. Hopefully I will never need stem cells or BMT. Hope you are well.

Elaine505
Posts: 1
Joined: Feb 2004

Hi: My husband just received his diagnosis two days ago. We'll see the hematologist/oncologist in two days. I'm just really scared right now. He's getting so weak and his gums are bleeding a lot. This came on so fast. Just 10 days ago he was pretty much strong and healthy. The speed of this thing was incredible. Sorry, I guess I just needed to vent someplace. What has been your expirience been? Thanks for listening.

Davie
Posts: 1
Joined: Mar 2004

Hi My name is Dave and I am a survivor of Lukemia I was diagnosed last Feb. and am now in remision. tell your husband it will be hard but to keep a stiff upper lip. Attitude is a key part of the recovery prosess. He will be in for a very rough fight but it is a winable fight. My wife went through hell for about 4 months. I am now about as healthy as I was before I contracted Leukemia.I hope you and your husband have as good an outcome as I had. God bless and if I can help in any way contact me at dave_f_83672@msn.com

pking72472
Posts: 2
Joined: Mar 2004

hello, i am a 38 yr old married man with a wonderful wife and two great children. i am in remission now for two years. i take 1 aspirin a day and live a normal and happy life after all the treatment. i also have never really been sick until i was hit with apl. he can make it through this make sure he keeps up his nutrition during his treatment.(my wife put insure in my favorite banana milk shake and made me drink it even if i was sick.) he can make it through this.you can email me @ pking72472@yahoo.com if you need any info or just want to talk. god bless

ritamack
Posts: 2
Joined: Jun 2004

HELLO, MY HUSBAND IS DX WITH APL . HE SUFFERED A STROKE DUE TO THE APL. HE IS IN END PHASE OF INDUCTION WITH ATRA, DONNA/CYTARABINE. HE IS IN DAY 20. HE WILL HAVE BONE MARROW BX ON DAY 30. HE HAS PROBLEMS FROM THE STROKE, LET ALONE APL. UR DAUGHTERS ARE YOUUNG TEENS , 3 OF THEM . CAN U LET ME KNOW WHAT THE FIRST YEAR IS LIKE
WE HAVE A 2X WHAMMIE WITH THE APL AND THE STROKE.
HOPE TO HEAR FROM U.

Susan P's picture
Susan P
Posts: 59
Joined: Sep 2013

HiRRita I'm a visitor from the Ovarian site I am now in Remisssion & on "wait & see" potocol

 

I'm intereasted in PML as my 45 yr old fave nephew is dealing with it he still in hosp "induction phase ?- since it is rare, I'm trying to learn what I can & see what his future may be like if he takes all his treatment

 

RE STROKE-- before I had to learn everything trhere is to know about Ovarian Cancer - I got to spend 12 yrs since 2002 learning everything about stroke  with the help of a fantahttp://www.strokenetwork.org/stic online support group

 

www.dtrokenetwork.org  it works very much like this board - yiou can go in & read all you want - but have to  register to post wqe callk ourselves stroke survivors - not victims

 

 

whiy go on choose forums sub forums are caregiver & survivor both woulf bbe of inbtereast to you I tytpe like a one- handed strokie  contact me thru our csn messenger with stroke detailsa - when tytpe - clot or bleed hiks deficits which side id weak I may be abgle to answersa few ofd the billion questions you have

Susan P from Alberta Canada TX & WY

ritamack
Posts: 2
Joined: Jun 2004

6-18-4 MY HUSBAND WAS DX WITH APL ON 5-27-4 HE IS NEAR END PHASE OF INDUCTION. HOW DID THE TREATMENT PHASES GO FOR U? HE ALSO SUFFERED STROKE BECAUSE OF THE APL PRIOR TO TX, HE HAS SOME OTHER ISSUES TO DEAL WITH DUE TO THE STROKE. HE CANNOT AT PRESENT READ OR COMPREHEND MOST OF THE WRITTEN WORD. FRUSTRATION
BECOMES LIIKELY WHEN AN AVID READER CAN NO LONGER READ.
PLEASE RESPOND AND INFORM ME ON WHAT TO EXPECT FOR CONSOLIDATION AND MAINTENANCE. ARE THEY IN-PT OT OUT-
THANK YOU,
RITA

liha0808
Posts: 9
Joined: Apr 2011

When i was diagnosed I was admitted to a hospital immediately and treatments started in 2 days.

kavi2906
Posts: 12
Joined: Jul 2011

Hi Liha,

How r u doing now.

I guess ur maintenance phase has started. Hey do u still put on the mask as my dr has asked me to wear the face mask for 2 more years and i would b on ATRA for 15 days and another medicine for 2 years.

I generally have headache and ear blockage and head throbing .

In my first n second phase of chemo i didnt loose much hair but this third phase of chemo i am loosing a lot of hair and on the verge of becoming bald.

JudyAnnetta
Posts: 2
Joined: Jun 2011

I was diagnosed in August 2010 with no symptons. I had just gone to the dr for annual blood work up. I spent 24 hard days in the hospital with chemo, then 10 weeks of outpatient arsenic, then 2 more out patient treatements of chemo and am now on chemo pills for 10 more months. It's hard but keep your faith and smile and laugh along the way.

kavi2906
Posts: 12
Joined: Jul 2011

Hi Judy,

I was also diagnoised with APML M3 in May 2011 with no symptoms. Normal Blood checkup and then chemo started . 3 rounds of chemo over a period of 3 months and now maintenance is gonna start.

How r u doing now. Can u please tell me how is life during the treatment and after treatment.
Please contact @ kavita_passi@yahoomail.co.in

Regards,
Kavita

pking72472
Posts: 2
Joined: Mar 2004

contact me at pking72472@yahoo.com i can talk to you and help you through this. you can make it through this and live a normal life.

dufferdom
Posts: 1
Joined: Mar 2004

Hi, I am a seven year survivor of APL. Take one day at a time and keep a positive attitude. I can be reached at dufferdom@netzero.com if you want to chat.

aml
Posts: 1
Joined: Mar 2004

hello, my name is angie. i was diagnosed with aml 2002. was on remission then relapsed last year. my doctors found out that i had apl last year. i'm on remmission now and taking vesanoid. i've talked about this with my family and friends, but never with other survivors. i've always tell them i'm ok, but to be honest i am scared. for what? i really don't know, maybe for the "what if...". my 4 year old really helps me a lot when i get scared.

niavas
Posts: 6
Joined: Apr 2004

I was diagnosed may 7 2003 with APL, spent 4 months in the hospital and 3 months of outpatient chemo, I was looking up some information and found that alot of times with AML people recieve a spinal tap to see if the cancer had spread is that true for most of you? And for those of you still fighting AML ask your oncologist about ATRA Its so much better than a BM transplant. E-mail me at Red_headed_hysteria@hotmail.com

Genet
Posts: 2
Joined: Mar 2005

Hey there. I am 22years old and will be 23 in May. I was diagnosed with APL in Aug 02. As of today I am in a complete remission. My doctor had me in remission pretty much after my first round of chemo. Its a very tough road that we have to travel, but you will make it. You will want to give up many times because the poking and prodding isnt much fun. Try not to concentrate on what is happening now, but what you will be doing when your better. I am here for you and will try to answer any questions. More that anything you have someone just to talk to. You will need that. I was too proud or just stubborn to really acknowledge that I had cancer. I didnt want anyone to treat me like I was going to break. This is the first time I have really chatted to anyone about my situation. Please keep me updated with your treatment. Good luck!!!!

HollieY
Posts: 2
Joined: Jul 2011

Hi. i was diagnosed with APL in october 2010.
i heard that it was very rare, so im dying to talk to people about the Disease & experiences

sg1968
Posts: 2
Joined: Oct 2011

My son is 25-years-old and was diagnosed on October 12, 2011 with Acute Myloid Leukemia. Yesterday the doctors told him they now think he has APML 3. Until this diagnosis, my son had no symptoms. They said he is responding well to the ATRA. My nerves are shot, I have no clue what to expect. I hear so many things. Can someone please help me understand this?

sg1968
Posts: 2
Joined: Oct 2011

My son is 25-years-old and was diagnosed on October 12, 2011 with Acute Myloid Leukemia. Yesterday the doctors told him they now think he has APML 3. Until this diagnosis, my son had no symptoms. They said he is responding well to the ATRA. My nerves are shot, I have no clue what to expect. I hear so many things. Can someone please help me understand this?

mdavis0107
Posts: 1
Joined: Nov 2013

My mother, who is 71, was just recently diagnosed with Acute myloid lukemia.  She has had blood problems all her life, and now it has just gotten worse.  She starts chemo therapy on Monday.   Is there anyone out there about my mom's age that has survived?  I need hope that she will be in remission.  They give her a 30% chance of survival.I still think she should fight.  71 is not as old as everyone seems to think, and I feel like doctors are ruling out stem cell transplant because of her age.

 

Please, any thoughts would be very much appreciated

 

Michelle

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