Well, I haven't been on and written in a while. There's been so much going on. My daughter was supposed to get a PET scan yesterday but the facility called and had to reschedule because the tech was taking a long 4th of July weekend. Now we have to wait another 2 weeks. She really needed the scan right away so we'd know what is going on in her body. Her counts did not even make it to 500 but they gave her chemotherapy anyway. I didn't feel comfortable at all with that decision. Her iron levels are through the roof- 1600's which is wrecking havoc on her liver. Her RBC's are low which is why they keep giving her the Aranesp shot. Didn't help the last time- her counts ended up lower than ever but they gave it this time because they really don't have a choice- she can't get transfused due to her high levels of iron. She is just not feeling well at all. They think there may be some other tumors causing all of this mayhem but we won't know that until the PET scan and as I said it's been delayed. This is just getting so frustrating. Please keep her in your prayers.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Prayers Needed
- By curejamilia
- Posted July 4, 2009 at 6:05 am · 6 replies
- Shared with the public
Explore topics in this journal entry and replies:
6 replies
- Oldest first
- Newest first
- By KATHEF
- Posted July 10, 2009 at 9:23 pm
- Report post
God bless you all. It's so hard to wait. Kathy
- By tqm1ed
- Posted July 19, 2009 at 2:18 pm
- Report post
hello.
i'm not quite sure what you mean by the count not being 500? if this threshold is not meant why did they still do the chemotherapy? i've also noticed you mention iron being above 1600? the reason i'm asking is i have some knowledge regarding blood counts and i wonder if i can help in any way? also if i may say/write you, your family and espeacially your daughter are such an inspiration.
in reading what you've posted has anyone mentioned to 'remove blood' so as to help in reducing iron levels? what i'm trying to explain is you can remove blood from the body and iron levels will drop then treat the consequence of this procedure by pinpoint treatments for plateletts, hemoglobin etc...?
ed
- By curejamilia
- Posted July 20, 2009 at 4:55 am
- Report post
Thanks so much for your thoughts and prayers. They worked! They are discussing XJade to remove some of the iron. Not sure when they plan to start. PET came out good, no new activity, but she's still having pain. Aranesp shot is now a weekly thing & worked well . Still tweeking the dosage amt. ANC was over 1000 this time. Hope you and your families are doing well. God's Blessings. You can write to us at curejamilia@yahoo.com
- By deebelle
- Posted July 21, 2009 at 9:26 am
- Report post
More prayers to heaven....
blessings;
Dee
- By kristina_dunn
- Posted August 5, 2009 at 9:26 pm
- Report post
I am so sorry that you and your daughter are going through so much right now. I try not to get on the comoputer so much thats why I havent sent my prayers. But I have you and your daughter in my thoughts and my prayers. I wish the best for you guys. I know it must be tough. Just keep the faith and keep strong for the both of you. She relys on your strength. I kniw its tough but we gotta try to stay strong for our kids. I will keep you guys in our prayers.
Add to the discussion