[callycaz]

i'm trying to find any one that has n.h.l .
my sister has just been dx with it and is due to start chemo. she is frightened to death, has lupus is enough to cope with ..now this.. anyone got any advice or what treatment side effects might be.
all we know it takes hours and she'll loose her hair..
so any advice would be most welcome
thanks cally xxx

 

[Clare.T]

Welcome to the forum cally but I am very sorry to hear about your sister. It is good of you to look out for her. I am assuming that NHL means non Hodgkin's Lymphoma. One drug used in NHL treatment is Rituxan or Rituximab which is also used occasionally to treat cases of lupus that haven't responded to any other treatment.

I have a friend with NHL who has responded wonderfully to Rituxan and another friend with lupus and Sjogren's who also developed NHL and found the NHL treatment put her lupus / sjogren's into remission as well as keeping the NHL down.

I think that the NHL treatment protocol might well combine drugs with the Rituxan that aren't used for lupus as well as some that are, such as Prednisone. Treatment for the NHL takes precedence over SLE or SjS, I think

We do have some threads about Rituxan protocols as used for lupus but I am not sure that will be entirely relevant to the treatment your sister will be getting for the NHL. You would do better to look for a NHL support forum

All the best
Clare

 

[callycaz]

thanks clare
ok will look else where...xx

 

[onetay]

callycaz,
hi and welcome to the site. I am sorry to hear about your sister. I do not have the disease that you speak of but I do have lupus. I have not had to have chemo and I really do not know how I would handle it either. I am glad that your sister has you to help her. I will say a prayer for her and you. I hope you both feel better soon.

 

[callycaz]

thanks tammy
sorry to hear you've had to cope with lupus too.
my sister has had it about 20/21 years now, its hard to keep track
when she first was dx they told her she had a about 5 years,
so shes done amazingly well. its taken its toll though.
so this is abit of a shock. even though i'm learning it happens alot..
isnt one thing enough to cope with...
you take care love cally xxx

 

[KarolH]

Hi Cally,

I am so sorry to hear about your sister having to deal with yet another illness.

YES, one thing is enough but sometimes the hand we are dealt leaves us asking why. Your a awesome sister and so happy you are supportive.

I will say a prayer for your sister.

 

[callycaz]

thank you. karol
my sister starts her chemo today , so keeping everything crossed..
we live about 3-4 hours apart so its phone calls only for a couple of days, till i can go to see her again at the weekend.
its good to have some good support from you lovely people though .thank you all.xxxxx