Forum

× Welcome click the New Topic button to post

Need Lymphoma support board - ABCS quality

9 years 2 months ago #33213 by LeeH
Thank you Sara Anne. We are fortunate in being in a big city, Chicago, with a wealth of medical talent (I do my followup at U of Chicago Hospital.

I also keep the lessons learned here at the front of my mind. We are currently using a hematologist from the Kellog Cancer center which is also affiliated with the U of Chicago.

This all started with a routine annual physical that detected low iron which led to iron supplements which were unsuccessful which then led to upper and lower GI which did find some bleeding which led to a bunch of drugs to resolve that issue. somewhere in here was a CT Scan too. Still didn't resolve the low iron so she swallowed a camera (no not my good Nikon :) ). This didn't find anything either so they sent her to this hemotologist for iron infustions which the original GP had also mentioned. The hemotologist started running additional blood work which led us to this point. Total elapsed time about 4 months. Anemia was minor but not normal and was unexplained. Although not critical or chronic, they went hunting for it aggresively and didn't hesitate to escalate.

I think this is the way it is supposed to work, isn't it?

Good insurance, I am certain, didn't hurt either.

Lee

Please Log in or Create an account to join the conversation.

9 years 2 months ago #33209 by sara.anne
I don't know about a forum such as this for lymphoma, although I am sure there must be one. I have a friend with CLL and I moniter that list for him. However, I have received fabulous help and information from the Lymphoma and Leukemia Society...including funds to help him travel for treatment.
http://www.leukemia-lymphoma.org/hm_lls

Also, depending upon where you live, their local offices offer a wide range of information, support, and help.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

9 years 2 months ago #33208 by LeeH
Thanks Pat. We're still working on the diagnosis. Hopefully the bone marrow biopsy will let us focus in on that Friday.

Lee

Please Log in or Create an account to join the conversation.

9 years 2 months ago #33206 by Patricia
So sorry Lee.
I guess you need to find out what type of lymphoma it is first. Here is a board that seems to have a lot of information and a forum link.
http://www.lymphomainfo.net/info/support.html
and this from the NHI has lots of info and links
http://www.nlm.nih.gov/medlineplus/lymphoma.html
Pat

Please Log in or Create an account to join the conversation.

9 years 2 months ago #33205 by Nix
I am sorry for the lymphoma, but happy it was dx'd in the very early stages. I don't know much about lymphoma, but anything that is found early always the patient has a head start.

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

Please Log in or Create an account to join the conversation.

9 years 2 months ago #33203 by LeeH
Didn't know where to put this but chit chat and light hearted banter didn't seem like a good fit.

Wife just diagnosed with lymphoma. Very, very early with some symptoms of anemia that didn't yield to the standard treatments.(no tumors yet and will get bone marrow test this Friday. Apparently this is highly treatable.

I know this is the beginning of another not so pleasant journey though, and would like to have a comparable group of people to go to for help.

Thanks,

Lee

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 1 User and 1160 Guests 
Regor's AvatarRegor

Legend: Site Administrator Global Moderator User Banned

Statistics

Today Total Opened: 0 Today Total Answered: 5 Latest User: ericjohnson1135
Yesterday Total Opened: 1 Yesterday Total Answered: 7
Total Posts: 52810 Total Subjects: 6871 Total Users: 8450
Powered by Kunena Forum