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Topic: A Little Help and Advice

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Subject: A Little Help and Advice
Date Posted: 5/30/2014 2:22 AM ET
Member Since: 8/26/2008
Posts: 501
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Please note that this was also posted over in 'Club Members' Thoughts'

Hello everyone, I'm not much of a 'talker' on these forums, but I guess now is as good a time as any would be to start right?

I'm in need of a little help and advice for anyone willing and able to do so, I figured this was the best place to ask since we all share a common love of books and knowledge.

My mother, who is only 46 years old, was diagnosed with Dystonia in 2005. For those who don't know, it is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. It is not well known and many people I've talked to about it had never heard of it before.

In March of this year the doctors diagnosed her with Neuropathy.  Which for those who don't know is a disease affecting nerves, which may impair sensation, movement, gland or organ function, or other aspects of health, depending on the type of nerve affected.

and last, but certainly not least, just about 4 weeks ago, the doctors diagnosed my mother with Chronic Lymphocytic Leukemia (CLL).

Yeah, cancer. My mom is definitely a fighter, I'll tell you that. We are all still in our state of shock and that's saying that lightly.

The reason I'm asking for help and advice is because I'm trying to do research on everything I can about CLL and honestly, I'm overwhelmed. There are tons of cancer sites and information and I really don't have time/computer access to sit hours on end at the computer trying to read up on this... so trips to the library to print off what I can will have to take place so I have the stuff to read on my downtime.

I was hoping people could give me some recommendations on any books? Also any places/sites I can possible contact to possible attain free books and/or packets on information (by mail) so I don't have to pay too much (money is tight for everyone, I know, but it's especially tight with my family now). Recommendations on any programs she can sign up for? Honestly any recommendations for anything or advice, etc. would be extremely helpful to us and I would be eternally grateful!

Date Posted: 5/30/2014 8:03 PM ET
Member Since: 1/27/2010
Posts: 339
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I am sorry I am not of much hep on the subject, but my thoughts are with you for sure. *hugs*

Date Posted: 5/30/2014 10:56 PM ET
Member Since: 3/12/2007
Posts: 2,244
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i  don't know where to look for info either, but my thoughts are with you and your mom, and family. 

Date Posted: 5/31/2014 12:22 AM ET
Member Since: 4/17/2008
Posts: 1,399
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Danie, I'm so sorry to hear this news.  I haven't heard of CLL, but I've done research on some other conditions & have generally found the Mayo Clinic to have valuable info.  Here is a link to info about CLL on their site (this page is specifically on lifestyle & ways to avoid infections, etc. but there are many pages): http://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/basics/lifestyle-home-remedies/con-20031195

Sending special thoughts your way....

Date Posted: 5/31/2014 1:11 AM ET
Member Since: 8/26/2008
Posts: 501
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@Jessica and Kim - thank you both very much I'll be sure to pass along the well wishes to my mother :)

@Sandi - thank you very much! I'll be sure to add that to my reading list and I'll pass on the well wishes to my mother as well

Date Posted: 6/1/2014 12:17 AM ET
Member Since: 1/11/2006
Posts: 35
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http://www.cancercare.org/

 

This site seems to have a lot of info and possibly support groups.  Just to let you know, don't think the worst.  My aunt is now CLL free after chemo.  Will be praying for you and your mom.  She is a strong woman.

Date Posted: 6/1/2014 12:19 AM ET
Member Since: 1/11/2006
Posts: 35
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Here is another site.

http://www.lls.org/diseaseinformation/leukemia/chroniclymphocyticleukemia/

Date Posted: 6/1/2014 12:28 AM ET
Member Since: 1/11/2006
Posts: 35
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http://www.cancer.net/cancer-types/leukemia-chronic-lymphocytic-cll

http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300147

http://www.cancer.org/cancer/leukemia-chroniclymphocyticcll/detailedguide/leukemia-chronic-lymphocytic-treating-treatment-by-risk-group

http://www.medscape.com/viewarticle/826016

http://emedicine.medscape.com/article/199313-treatment

http://www.ucsfhealth.org/conditions/chronic_lymphocytic_leukemia/treatment.html

http://www.cllforum.com/

http://www.focusoncll.org/

http://clltopics.org/index.php

Date Posted: 6/1/2014 12:30 AM ET
Member Since: 1/11/2006
Posts: 35
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http://www.cllglobal.org/

 

If you need me to research anything for you, just let me know.  If you need me to I can print and mail research to you.  I would be glad to help.  Take care.

Date Posted: 6/3/2014 4:35 AM ET
Member Since: 11/26/2005
Posts: 773
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city of hope website

http://www.cityofhope.org/search?q=Chronic+Lymphocytic+Leukemia&x=7&y=8

prayers for you and the family heart


 

 



Last Edited on: 6/3/14 4:36 AM ET - Total times edited: 2
Date Posted: 6/19/2014 4:20 PM ET
Member Since: 3/21/2009
Posts: 4,812
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Prayers heart

Date Posted: 6/22/2014 12:18 AM ET
Member Since: 5/4/2007
Posts: 13,159
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Best wishes to you and your mom -