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26 year old AML patient - blood count of 0

Sophia_S
Posts: 1
Joined: Dec 2012

Hi there,

My 26 year old sister Laura was diagnosed with AML on 11/10/12 and started chemo four days later. We were told a few days after that she has type M4eo.

We were told to expect her blood count to go up early last week and that she would be able to come home before her next round of chemo this week for a few days, but her blood count is still at 0 and she won't be coming home any time soon.

Is there anyone who could tell me whether this is normal? My family and I are really worried. We were told by her doctor that he was expecting the blood count to go up on 12/03/2012 - it went up to 0.1 on 12/04/12 but went back down again to 0 on 12/05/12 and has stayed at 0 since then. The doctors are telling us not to worry but it's hard when they seemed so sure her blood counts would go up last week.

Also my sister is starting to go crazy about being stuck in the hospital room. She has been really positive and strong since the diagnosis but over the past few days has become quiet and withdrawn and when we try to speak to her she says she is fed up with being locked up like a prisoner and she doesn't want to talk to anyone. I think it's really knocked her that her blood count isn't budging and she won't be coming home when she thought she would. What can we do to help? I feel so helpless. Has anyone else felt this way through treatment? I keep reading and hearing how important it is through treatmentfor the patient to stay positive and I'm worried that she is so down.

Thank you,

Sophia

majito
Posts: 18
Joined: Mar 2010

Let me start by saying I'm really sorry about your sister diagnosis, I was diagnosed back in 2009 with aml subtype 3 not an easy ride but doable, about your concerns about your sister's count is normal the drs could tell you around what day they expect that your counts will bounce back but it all up to your body!! My Anc went up to 4 the following day it went back down to 1 is a roller coaster everyday! I was 30
Days my 1st inpt stay n I was going crazy knowing that my discharged was based on my ANC result! But eventually went up to . 5 it takes alot of patience with this awful disease! I wish your sister n family the best! Hang in there have patience with your sister when she dislikes every1 around her is not an easy ride!! Hope she gets to
Go home soon! If there is anything I can help pls let me know!!

speedyedie
Posts: 2
Joined: Jan 2013

I am sorry your sister is struggling but do understand her feeling like she is in prison.  I am half way through my treatment with 2 more to go. I hope to be done by Easter.  I had a consult at Mayo Clinic after my first treatment to review if I was a candidate for transplant.  I was not.   The doctors watch my ANC and determine my progress through that.  As well of course as the platelets and the HGB.  I have had to have platelets and blood numerous times  In the beginning my family got a Caring Bridge site for me.  I started this journey on Aug. 5th,  and the conduction saw me develop a Fungal pneumonia in both lungs.  I barely made it and am now taking a fungal medication that is very expensive to keep it at bay.  Then also after the second round I developed severe gall bladder issues and had to have surgery which then ened me back on a surgical wing with complications from the surgery.  I share this to tell you my caring bridge site which friends and family connect with from all over the states and leave me notes and encouragingment has helped keep me going.  I have my lap pc and look at it several times a day while in the hospital.  I have over 11,000 hits in 5 months.  i also journal my story including the down times so they can see where I am at. Humor has also helped me look at things from a different perspective. The other thing my family did was decorated my walls with my cards I recieved (they soon ran out of wall space)  as well as pictures of my family.  Staff would always comment and we had some great converstions.  Another thing I did was ditch the hospital gowns.  UGG!!  I had my family buy me 4 different flannel PJ's with long sleeves so I did not develp sheet burn on my elbows and they also had a pocked on the left side so I could put my "hoses" from my Hickman into it when they were not used. The floor I am on will wash them as I need them washed.   I also requested and they brought me fuzzy warm booties for my feet.  And lastly I had a calander where I could see it and crossed off the days as they slowly toiled by.  I also have ear phone and listened to my favorite music from my cell phone Pandora or sermons from websites.  Also 2 Quotes with pictures were lamentated and hung in my room were the little frog peaking out from beneath the leaf saying "Not to spoil the ending for you, but everything is going to be okay."  and another... HELLO  This is God.  I will be handling all of your problems and concerns today.That's my job.  Your job is to give them to me, and then to trust me   HAVE A GREAT Day! 

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God Phil/ 4:6.

If she is open find her a great devotional book.  My Bible readings and devotionals everyday also kept me grounded. 

It is a battle that she must engage in but you as a concerned and loving suport person can come along side and be her leaning post in the meantime. 

Keep us posted.  speedyedie

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