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How cautious do you have to be with NHL stage 4

rocky5
Posts: 16
Joined: May 2003

Hi. My dad has NHL Stage 4 large Bcell lymphoma. He has had only one treatment, but says that his energy level is going up, and b/c he is a work-a-holic, he wants to start roaming around again, like going to the store, off to pay bills, bank, etc. But, I'm a little concerned b/c his WBC are like 1,700...and normal I think is 4000- 10000. So I'm a little worried. Should I suggest he not go out, and stay bed rested? Any advice would be greatly appreciated. Has anyone been through this before, and what are were some of the consequences once infection was set in. Thank you for any help and replies.

jackw5
Posts: 3
Joined: May 2003

Glad to hear he's feeling better. My WBC got down to 500 and I ended up in the hospital for 6 days with a Staph infection. I don't know how I got it but I don't think running around did it.
Jack

s53Susie
Posts: 3
Joined: Apr 2003

Hi Rocky. Unless your dad's doctors tell him to stay home, he should totally enjoy having energy while he still has it and go run whatever errands he wants! Of course he should avoid sick people and make sure he washes his hands a lot-I always carried antibacterial lotion with me! I think unless his neutrophil count gets lower than 500 he can still go wherever he wants. I had 6 treatments for NH lymphoma and my counts went below 500 for the last two-so I had to stay at home and not go out. I also wasn't allowed to eat raw fruits and veggies. Your dad's dr will definitely tell him if he needs to stay at home if his counts get low, so as long as he has the energy he should totally take advantage of it! Hope this helps and good luck to your dad! Susie

Osulthaal
Posts: 2
Joined: Sep 2003

Hi, Rocky - Best advice, I agree, is to follow care/activity guidelines per the MD. While undergoing treatment within the past 2 years I was encouraged to be cautious, such as avoiding crowds, etc. especially since it was partly during the "flu" season. No real concern was expressed to me, overall, as long as my count remained above 1,000. When it did fall, I received several injections of the growth stimulating hormone G-CSF, which brought an amazingly (to me) swift increase in the blood cell count. Best to your Dad, and to you. Just a tag-on note: My message is on the Hodgkin's site - I just ran across yours while scanning around. Anyone who has experience/information on my apparently rather rare indeterminate mix of Lymphocyte Predominance Hodgkin's Disease (LPHD) vs. T-Cell Rich B-Cell (non-Hodgkin's) Lymphoma (TCRBCL) might contact me - I'm faced with some quite varied treatment options. Thanks

nijrose
Posts: 1
Joined: Nov 2003

Hi Osul,
I'm in the UK, being treated for TCRBCL - I'm told I'm the first case the consultant has come across, so I know how you feel. I'm a 41-year-old male, and the TCRBCL manifested itself inside my spine as a lump before metastasis on my lungs and spleen. The only reason I even found out In had it was the lump had shut my nerves to my hands off - the GP had spent 18 months blowing it off as a pinched nerve caused in the gym - had to get it diagnosed privately by a neurologist. The way it has presented is also quite rare - unlike the usual visible lumps. This shows you should go by your intuition I guess.
The only option I was offered was CHOP combined with Mabthera - it seems to be working - the lung lesions have gone and my full results are due in soon. What other treatments have you been offered?

Stickboy
Posts: 4
Joined: Feb 2004

Rocky,

If you dad feels like getting out of the house and he is able .. by all means let him. I continued going to work during my Chemo treatments when I could. I think it really helped to interact with people and feel somewhat "normal".

Shan
http://www.lymphomaniacs.org/scase/

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