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Diagnosed with APL

SekireiFlame
Posts: 4
Joined: Jul 2012

Hey all,

So my name is Nick and I am 28 years old. On June 11 I was diagnosed with APL leukemia. This was a shock to me and my family as this was something that was not even on our radar. I spent 4 1/2 weeks in induction chemotherapy, then was released last week, only to have a seizure from the Keflex and go back into the emergency room. Now I've been home a couple of days and am on anti seizure medication. Myself now I worry constantly about the next steps and dealing with the consolidated chemo. I also feel bad for my family, even though they tell me not to feel bad, I know this has put a lot on them, moving back home and having to have to care for me. It just feels like an insurmountable issue, and I don't know how I will get through it. I also worry with every sneeze, every little runny nose, every issue, that I will have to go back into the hospital and have to be away from my family again. I want to find a way to beat and get through this. Any advice would be great as we are just starting this journey.

Sincerely
Nick

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

Hi Nick. I too was diagnosed with APL back in 2009 and the advice I can give you is to always be positive. no matter how hard it is to be positive just try. it makes everyone around you feel better which in turn makes you feel better and believe it or not it may actually help you physically get better. if you have any questions or just need to vent just message me on here. i hope things get better for you.
Hopin for the best!
Krysten

nempark
Posts: 579
Joined: Apr 2010

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

nempark
Posts: 579
Joined: Apr 2010

Every thing has to be sterilized and your foods must be cooked under extreme cleanliness. Because upon every thing else, you don't need an infection. Make sure the nurses wear gloves and even the chairs you sit in at the hospital clean the handles. Try not to eat out and don't go to overcrowded places.

SekireiFlame
Posts: 4
Joined: Jul 2012

Hey all,

So thank you for all your advice and support. Since my last post, I have been living normally at home. The doctor said I had no restrictions, so I have been trying to enjoy myself as much as I can during the time, going to the movies, having dinner with friends, and in a few days going to see my friend's new baby at the hospital. Luckily, we have been able to have my consolidations moved to a more local location, whereas before we would have had a four hour commute round trip each day, whereas now we will only have an hour commute round way, so I will be able to be home for most of the day during this time. I am meeting with my new doctor tommorrow and then having the port inserted at some point, with the arsenic starting on Monday.

Sincerely
Nick

xuelan
Posts: 23
Joined: Jul 2012

Nick,

Hang in there. You will realize that you are "lucky" (forgive me the use of that word) that you have APL, perhaps the most treatable form of AML. You should do very well and I am glad, from all that I have read, that you are getting arsenic as well as the ATRA.

As for myself, I am twice your age and developed AML, with intermediate prognosis because my chromosomes were not grossly abnormal. Believe it or not, it is sometimes better to have observable abnormalities!

I had basically no choice but to go through induction (twice! ugh!) and then consolidation followed by a bone marrow transplant. My donor was from Germany and some day they will let me find out who he is.

The process is so scary, but I am certain that you, like I, will be able to let go of the fear as you become healthier and healthier. Keep eating well and allow yourself to absorb all of the love there is.

SekireiFlame
Posts: 4
Joined: Jul 2012

So I have begun my arsenic treatment, which is given to me over a one hour period each day. Today was the fourth time, and so far, I am feeling really good, surprisingly. Basically the only symptoms I have experienced have been a rash on my hands (treated with a benadryl tablet as needed), slight nausea (treated with compazin), and tiredness (treated with an afternoon nap). I did run a slight fever of 99.1, but nothing to worry about. Other than that, I have not had any MAJOR issues. Basically when I get in, I say "Let's get er done". I have a really nice nurse who is very friendly and always very chatty, and also my mom goes with me to treatment, and we lately have been playing a lot of hangman (she's ahead of me by 14 to 10). The one thing that annoys me is that I can't get rid of any blemishes due to the risk of infection. So annoying. Anyway, thank you so much for the supporty, and I look forward to continue updating.

hillariejoy
Posts: 1
Joined: Aug 2012

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.

tinnieval@hotma...
Posts: 7
Joined: Jul 2012

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

SekireiFlame
Posts: 4
Joined: Jul 2012

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. :(

4luvofyou
Posts: 1
Joined: Sep 2012

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

Leukemiagoaway
Posts: 6
Joined: Jun 2012

Nick
I forgot to talk about the port.
I hope yours went in fine.
there is a cream (MLA) that can be put on befor being poked so that it doesn't hurt as much.

Negu1983
Posts: 1
Joined: Oct 2012

Hey nick I am new to this site and I was going through some of the message boards and found your story. I would have thought I was writing it myself. I was diagnosed with apl leukemia in November of 2011 we will get through this. If you would like to talk message me my names Leanne

Leukemiagoaway
Posts: 6
Joined: Jun 2012

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.

vastaabs
Posts: 1
Joined: Apr 2013

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
Posts: 1
Joined: Feb 2013

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...

bsow8190
Posts: 1
Joined: Sep 2013

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.

 

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