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APL - Just Starting Maintenance

Superstar
Posts: 8
Joined: Jun 2005

Just wanting to talk with other people who are in the same position as I am! I'm 28 - diagnosed 12/04 and after 3 rounds of chemo am still in remission! What a journey - especially with a 1 yr old and husband! Now taking Atra, Methotrexate and 6MP...I find the Atra to be have some nasty side effects. Just feeling tired some days & wonder if I'll feel totally "normal" again?! If anyone else can relate I'd love to hear from you!

Laurabell
Posts: 10
Joined: Feb 2005

Hi, I am 23 yrs old and was diagnosed with APL in Sept/04. I also did 3 rounds of chemo and have been on ATRA for maintenance since the end of my chemo. I take it for one wk on, one wk off. It used to give me severe headaches and I always felt so much pressure in my head. I couldn't do a lot. So my doctor cut my dose in half, and it made a huge difference, although I still notice side effects. But, I've been on it for so long now, that I've tried to adjust and I just remind myself that it's saving my life and that I won't be on it forever! Thank goodness! As for "feeling normal" again. I remember getting so frustrated because I felt the same way you do now. The recovery from chemo is lengthy. But trust me, you WILL feel normal someday. It's been a little over half a year since I finished chemo, and I think I got better and better each month. I compare to how I feel now to like 3-4 months ago, and I notice an improvement. So don't worry, you will get back to your old self. I think once the ATRA is finished I will feel good as new! I can't wait to get off it! Do you have to have bone marrows every three months? What do you do in the way of check ups now??? My doctor said that there is a 70-80 % chance of a cure with APL. So that was great news. Well, congratulations on getting through the hardest part!!! I find emotionally I am sometimes still upset, but it also is getting better with time. Well I would love to hear how you are doing and coping with the ATRA:)
Take care.

Superstar
Posts: 8
Joined: Jun 2005

It is so good to hear from someone who is going through the same thing...it makes me feel like I'm not losing my mind!! =) I take the Atra 15 days every 3 months and have just started but it gives me severe headaches to the point that I don't feel like doing much and it makes me irritable. I had my last BMB after the last round of chemo and one test came back with a "little red flag" as my doctor put it so instead of waiting another 3-6 months until the next one I have to go in in 2 months. Depending on these test results, which I'm confident will be perfect, I'll go in every 3-6 months for more BMB's. Other than that I go once a month to have my blood drawn. I'm so glad to hear that you wondered about feeling back to your old self - I can see it too that I'm improving when I look back even to last month but for whatever reason I thought the process would be a little quicker. One day at a time, that's what I keep telling myself. I've also heard good news about staying in remission with APL, my doctor told me about 98%. Do you find that sometimes you still worry about a recurrance? How fast did your hair grow back - I'm amazed at how fast mine is starting to come in already! It was SO great to talk to you, I'd love to hear from you again! Take care and God bless!

Laurabell
Posts: 10
Joined: Feb 2005

Oh it's so nice to hear from you! I relate to all that your saying soo much. Anyone who can get through those awful ATRa headaches is amazing!! I swear, they are so stressful, especially when you are beginning to feel better otherwise and you want to start doing more. But just take it slow and don't push yourself too much. I can't imagine going through this with a 1 yr. old. You must be an amazing person and mother. That would be very tough. Well I wish you nothing but the best of luck on the results of the next bone marrow. You sound so positive and that will help i'm sure. With the high chance of staying in remission I am relieved. But, I used to worry and still do from time to time that it will come back. Sometimes my mind goes crazy and I think that it is coming back. Then my tests all come back fine. It's weird, a lot of the emotional stuff afterwards I was not expecting, but when your going through all the chemo and your really sick you use all your energy to just get through it physically. Then I think the emotional aftermath is very tough. But I guess it's different for everyone. I also thought that I would be normal as soon as the chemo was over and I was feeling better. But, I was reminded that the chemo is essentially poisoning your entire body and your body needs time to heal itself. So there were a lot of things I noticed that weren't normal for awhile, but like I said they go away. As for my hair, it started to grow back after chemo, slowly at the start, then at normal speed. Now it's like a short pixie cut. I'm not a fan of short hair but I do love having hair again! It's hard to be patient for it though. Especially once you are feeling better and just want to look like your old self. OH and my hair before was very fine and it grew back a lot thicker and curly!!!! Sooo weird, since my hair was stick straight before, but I've heard of this happening before to cancer patients. People keep asking me if I've permed my hair....heheh. Well stay in touch, and write anytime! I check this all the time!!!
Take care.

Superstar
Posts: 8
Joined: Jun 2005

Hello Again! I feel like this is good therapy for me to hear other people say they feel exactly the same way I do! I agree 100% about the emotional stuff hitting you afterwards, this is the part I wasn't expecting. Not that I thought life would be as it was...but I didn't expect to have some of the thoughts and feelings that I am. But every day is another day and I'm just grateful to be here to enjoy it - even with the "road bumps" from all this!! I'm going to the hospital I stayed at this week to visit with another patient who has APL as well and is just starting her first round. I'm really excited & hope that I can be of some encouragement to her having gone through it all myself!
My hair is about 3/4 inch long - but I'm glad to hear yours is long enough for a hair style already! I did get a hair piece, but for the most part I just wear bandanas or nothing at all! That's something I've learned, baldness is a badge of honor and I shouldn't be ashamed of it! =) I've always worn my hair shoulder length or longer but when it was falling out I had it cut short, about 2 - 2 1/2 inches, and absolutly loved it! I think it's kinda fun that now I can experiment with different hair styles as it grows out! Mine seems to be the same color and texture but I think your case, having it come in completely different, is more common with chemo patients.
Thanks for thinking of me with the next bone marrow that's coming up in a couple weeks. Not really looking forward to that but I guess it's gotta be done so ya just do it!
It was wonderful to hear from you again. Take care of yourself, write anytime you'd like!

Laurabell
Posts: 10
Joined: Feb 2005

Hello again!
Just wondered how you were doing and how the bone marrow results were...I know it was a little while ago, but I hope everything is going well! I just got my monthly blood counts and everything looks good, so great news of course. Well just checking in, I'd love to hear from you!
Take care,
God bless,

Superstar
Posts: 8
Joined: Jun 2005

Hey There!
Thank you for thinking of me...this test was kindof a hard one for me. I guess I wanted so badly for everything to come out perfect and it did!!! They said everything looks fabulous, no need to worry so to say I was thrilled was an understatement! I finally feel like I have some closure on that part of my journey, now all I have to do is look forward and live life to the fullest!
I'm SO happy to hear everything looks good with you as well - it's always nice to rejoice with someone else! Hope all is going well with you otherwise - God bless you too!!

Laurabell
Posts: 10
Joined: Feb 2005

Hi! Sorry this took awhile! Anyways just wanted to say congratulations on the great bone marrow results a month or so ago!!! That is great news! how are you dealing with the maintenance therapy?? Let me tell you, the time does fly!! I am in my last month of maintenance and it will soon be a year since my dx. I can't believe it! I hope you are well!
God Bless,
Laura

Superstar
Posts: 8
Joined: Jun 2005

Hello Again! Thanks for the update on yourself, it's always wonderful to hear that people in the same situation are doing so well! The maintenance is going well...starting to really feel like I'm getting back to my old self. The energy level is great and I feel like I'm making big strides to start feeling 110% again! Of course with hair long enough for a decent hairstyle that helps a ton!! I'm about 3 months into the maintenance and it's hard to believe it's been that long already! Thanks for checking in - take care and be well!

God Bless,
Kim

debbie41
Posts: 2
Joined: Apr 2004

hi,just to let you know thati was diagnosed with apl.now in remission for 1yr@1/2 and things are looking better. yes went on all the meds your on couldnt stand them the effects were a bother. but cut down on them.hey after you have allthebone marrow test done from the hip[all they need] they,ll do blood tests. now that pin prick is aloteasier than the marrow coming from the hip.,and it gives you the samesesults.they have to have enough marrow to test tohave on there records to be able to do the blood test. i hope everything goes well, God be with you.

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