Diagnosed with APL

Hi Nick
Hello my love: I know you are new to this board and new to this dreadful disease. My 45 year old daughter was dx with Acute Lymphoblastic Leukemia (ALL)Right now you have the advantage on her "your age". You don't have to mention to me about the shock, I was standing right their at her bedside when I saw the doctor come into her room and I saw written on his coat "ONCOLOGY" I asked my daughter what he was doing here and she said "Mom He will tell you". Well my dear a life changing moment. My daughter had her own condo and a decent job, she never went back home. We had to move her in, so right before our lives her life changed along with ours. My life now surrounds her and to tell you the truth as a human being sometimes it does cross my mind that it can be overwhelming, but she is my daughter and I will do anything to see her get over this monster. I know 90 percent of the time, she grieves for me, because I do everything for her. I am sure your family did not have any of this in their plans, but be assured that they are just like me sometimes negative thoughts but the bottom line is there are there for you and be thankful and stop worrying about them. There is a Great God that created us and knows each and everyone of us and knows what we are going through. Pray dilligently and talk to him as though you are talking to a friend ask him to give you the strength and wisdom to be able to handle and endure this crucial time in your life. You will feel peace and will be able to move forward. Do not look back at what you had and do not feel sorry for your self, work hard at a positive outcome and you will get through this. My daughter failed the induction she was supposed to be in remission but then shortly after the cancer came back with a vengence. We were all devasted. She is now on a very rigid and intense protocol. I have to take her to the hospital every day for shots to build up her platelets and blood cells because we are Jehovah's witnesses and we do not accept blood transfusiions. (too many complications) Anyway, not to make you scared, she had a lot of fatigue to the point where she cannot even sit up for a long time and many more hospital and ER visits due to side effects. But it is also amazing how medicine works and how the body can also repair itself, by the Grace of our Great Creator God. Please hang in there stop worrying about your family, they are more than happy to help, that's what family are for. Off course, you will worry about every sneeze, every cough and even if your finger hurts, its only human and normal to feel this way. After you are midway your treatments and the different hurdles (which I hope you never have) you will become more used to haveing this dx and work towards conquering this beast. Every day will be a day closer to a cure. My love, I know what you are going through and I know how you feel for your family. But they are alright. You work on taking care about yourself and they will do the same for themselves. This is definitely not an easy journey, but it is definitely doable. God bless you and your family and please keep in touch. I would be real happy as a mother to know your progress. J

hillariejoy said:

APL Survivor
I was diagnosed with APL in 2002 when I was 20 years old. Last month I celebrated 10 years of survival! I know that it is a long road, and it all SUCKS, but hang in there.

Wow hope to make the trip I
Wow hope to make the trip I was told apl march 2 2012

SekireiFlame said:

Don't Know What To Do
So for the last few weeks things have been going really well, the arsenic has responded well to my body, and I have been feeling great. Then today, it all hit the fan. My supervisor at my job called me and told me that when I came to pick up my stuff from my work place, I would have to include a letter of resignation. This seemed odd to me, as my medical leave of abscence was ending soon and I had not been advised of this by the leave specialist I was working with. After many phone calls within the span of two hours made by me and my brother, we find out that we were not told the total truth when we started this process, that I would have short term disability for six months and then would be eligible for long term disability. As it turns out, it officially ends tomm! Now keep in mind we did not get a letter from the company and no notice of a requirement of a letter of resignation until today. So at this point, my family is scrambling to see how we can keep the disability and not lose it, because without that I will have no income, and with no income I can't afford COBRA. So its really a lot right now, and even though my family tells me to relax and we will figure it out, I still feel like a let down. I feel like I have put us all in a position of negativity.

Hello All,
My 36 y/o husband
Hello All,

My 36 y/o husband was diagnosed in 7/2012 with APL. We were definitely shocked and devastated especially since my husband was an overall healthy person who was very physically active. He was immediately treated in the hospital and had a 6 week stay. Since then he has started Arsenic treatment which will be a course of 10 weeks. Overall he has been tolerating treatment very well with the exception of an incident of irregular heartbeat with the Arsenic. I was wondering if anyone would mind sharing what type of side effects you have or have had. Did anyone experience oily skin, ears clogged or feeling muffled? Any skin or face blemishes? Your feedback is greatly appreciated.

Since the diagnosis I am constantly concerned and fearful. Trying to stay positive is a MUST, but it is a challenge everyday. Good Luck to you all and God Bless!

Nancy

APL
Nick
My APL was found in March 2011. Like you I spent the first month in the hospital. The next phase is not as bad as those bad bays in the hospital. My infussions lasted a few hours each day for 5 days then I had the weekend off. I did that for the summer and then had some time befor the three day stays in the hospital for the next treatment. Most of the infussion phase was ok, I was still gaining strength lost in the hosp. Tired, weak, confused, agitated would be some of the words that I use to sum it up. The 15days every three months of Tretnion on the other hand is nasty for me. I get the worse headaches of my life and of course sick to my stomach. I have been able to drive myself to all of my infussion apt and Dr. apt as long as it is not durring those 15 days.
Don't worry about burdens...things happen, some day you will be able to do for them when they need it. I trust in the figure 8 theary, some of the good things I did in the past will come to me now when I need it, and then I will be able to do for others again in the future.

Leukemiagoaway said:

APL
Nick
My APL was found in March 2011. Like you I spent the first month in the hospital. The next phase is not as bad as those bad bays in the hospital. My infussions lasted a few hours each day for 5 days then I had the weekend off. I did that for the summer and then had some time befor the three day stays in the hospital for the next treatment. Most of the infussion phase was ok, I was still gaining strength lost in the hosp. Tired, weak, confused, agitated would be some of the words that I use to sum it up. The 15days every three months of Tretnion on the other hand is nasty for me. I get the worse headaches of my life and of course sick to my stomach. I have been able to drive myself to all of my infussion apt and Dr. apt as long as it is not durring those 15 days.
Don't worry about burdens...things happen, some day you will be able to do for them when they need it. I trust in the figure 8 theary, some of the good things I did in the past will come to me now when I need it, and then I will be able to do for others again in the future.

New here

My diagnosis came in September of 2012. Like everyone else I spent 5 weeks in the hospital, through several blood clots and for the most part don't remember much about the stay.  Just finished the consolidation round, lack of stamina or energy are the biggest issues, blood count fluctuations are another. 

 

I'm looking for others going through or have gone through APL diagnosis and treatment, to help me keep heading forward.

 

Virginia

Starzgirl11 said:

Hey
Hi my name is Libby, I'm 26 and I was diagnosed with APL October 30, 2012. Its been really hard for me. it came out of no where. I went to drop my son off at school and went to the ER not thinking anything I was brusening and bleeding but I didn't know what it was. then I was brought to another hospital for a month. it was really hard for me because my son didn't know why his mom was in the hospital for that long... I'm in complete remission. I take a bunch of chemo pills and I'm always tired with no energy. it sucks so bad. I have to be on them for a year. I also when I was in the hospital for the first bone marrow biopsy the needle got stuck in my back. it was the worst experience of my life. it hurt so bad. and then after all my chemo stays I had to get a spinal tap. it was bad because it was leaking fluid so I had bad spinal headaches so I had to go back to get a blood patch... it was so bad... I hope u are doing good...

APL

Hi Libby,

I was diagnosed with APL in March 2011. I am a couple months from finishing maintenance.

I kissed my son goodbye as he went to school that morning and didn't come home for 5 weeks. It was a shock and my little guy had no idea why he couldn't see Mommy.

How are the both of you now? I still see lingering effects in my son.