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Original poster

FIL was told yesterday he has non hodgkins lymphoma

16 replies

nailpolish · 04/05/2006 07:34

even though he is an old goat, i am sorry for him. dh is devastated, his mum died from pancreatic cancer 18 mths ago when i was 8 mths pg.

fil has got some chemotherapy tablets at home he has to take every day. the dr told him its 'low grade' but also in the same sentence he said its 'incurable'

just looking for experiences from anyone, tia

OP posts:
wrinklytum · 04/05/2006 08:11

dear nailpolish,in my other life ie work I look after people with haematological disorders.As I dont know the ins and outs of your fil type of lymphoma dont want to go too technical but there are many good websites that can offer info and support.Cancer bacup excellent,also lymphoma association,will try and post proper web addresses to you it may be late on tonight.have to go as dd screaming and ds nagging for an apple to be cut up.Soory you are going through this thinking of you.

wrinklytum · 04/05/2006 08:11

dear nailpolish,in my other life ie work I look after people with haematological disorders.As I dont know the ins and outs of your fil type of lymphoma dont want to go too technical but there are many good websites that can offer info and support.Cancer bacup excellent,also lymphoma association,will try and post proper web addresses to you it may be late on tonight.have to go as dd screaming and ds nagging for an apple to be cut up.Soory you are going through this thinking of you.

Original poster
nailpolish · 04/05/2006 08:34

thanks, i will have a search on google

OP posts:
carlk · 04/05/2006 08:40

Sounds like my FIl
8 years ago now they found NHL and he had a real spate of different treatments and was cleared-ish
his was the agressive type and after the treatment they said it was low grade and gave him 30 years or so, at 60 he didnt think that to be a bad deal,
Recently during one of his regular checks they found a lump in his neck and confirmed it as the NHL ,it was removed and he is having chemo again. Tablets I think, no one seems particularly panicied this time and he seems as fit as a fiddle still.
This can be a cancer you can live well with
My FIL knows he cant be cured but 8 yesrs on he is doing very very well.
Dont worry too much yet there doesnt seem to be any panic on the part of the medics yet from what you are saying
It cant be cured but the periods of remission can be very very long.

I will talk to the outlaws and see what supports they used.

Travel insurance can be a bugger but there are companies that specialise.

What I'm trying to say is that is my recollection of the biggest problem he has had for many years.

Original poster
nailpolish · 04/05/2006 08:48

hi

what is his quality of life like? FIL has other problems, he has a pacemaker, is on warfarin, has gout in both legs

symptoms from the NHL seem bad - night sweats, hes lost a hell of a lot of weight etc, but i am thinking the chemo will suppress these

he lives on his own, i worry about the housework, he insists on driving and he has just booked a holiday

OP posts:
wrinklytum · 04/05/2006 09:05

there are many types of lymphoma under the heading non hodgkins lymphoma some are more treatable than others.Maybe the best thing would be to arrange a chat with your fil consultant if your fil is agreeable and feels he needs more info.Many people can live a long life with nhl and treatments are improving continually

Original poster
nailpolish · 04/05/2006 09:07

FIL was at the hospital wrinklytum yesterday for his weekly blood transfusions (he is severly anaemic) and he had a long meeting with the consultant, who gave him lots of info

trouble is FIL keeps it all to himself

i think he will tell us more when he is ready

i feel reassured that he has lowgrade, it may be incurable but hopefully if we get the symptoms under control he can have a decent quality of life for a few years yet

OP posts:
carlk · 04/05/2006 09:42

His quality of life is excellent his initial treatment affected his knees which has slowed him up a bit, he has arthuritus (sp?)
You certainly wouldnt know he was ill.
He was only playing football with DD (2) in his garden on Mon, does bowls twice a week, active in the local church.
FIL originally had night sweats, its what got him diagnosed,but they went after the first treament.

Original poster
nailpolish · 04/05/2006 09:43

oh he sounds fab, good for him.

not always doom and gloom then, i shall tell dh

OP posts:
yoyo · 04/05/2006 09:46

Nailpolish - my MIL has non-Hodgkin's too. It took an age for the diagnosis and she was very poorly by the time chemo was started (tablets too). Hers is low-grade. The chemo had very few side effects with her - she did feel sick and had a very dry mouth a lot of the time. Her appetite was also fairly poor. She had lots of blood transfusions initially (she was diagnosed in Summer 2004) but is now regularly monitored and knows when she needs blood (feels incredibly tired and appetite disappears). Her weight fluctuates wildly - she is 5'8" and went below 8 st at one stage. The doctors can provide special drinks though. She does seem more prone to illnesses and even simple colds can floor her and she rapidly develops infections (she has been hospitalised a few times). She was told that they can keep changing the types of chemo as and when necessary so despite it being incurable it is manageable.
She found Cancer Bacup brilliant (as did I having spoken to them loads of times in 2004). Tell your DH to ring them as they will help him enormously.
It is hard and it took her a while to come to terms with it but she was so ill by the diagnosis that she thought she had weeks to live so was actually quite pleased as to her it could have been much worse.
I can ask her anything you want so feel free to CAT me if you have any specific questions. She has kept a detailed diary so she will know each stage of the treatment.
She has done well and has even been able to care for my FIL who has dementia through it all.
Wishing your FIL well and reassure your DH as best you can.
PS: the night sweats will inprove. BACUP have an excellent leaflet which goes through all the side effects and will even take you through specific chemo drugs.

Sorry this is so long!

carlk · 04/05/2006 09:47

Not all doom and gloom at all but there are several forms low grade, as I understand it has a better outlook.

He often jokes about the 30 years prognosis, saying the dr said he is bullet proof til 90

carlk · 04/05/2006 09:49

oh god yes I forgot about the immune system
It is quite important to stay away when anyone has infectious stuff as even mild stomach bugs can last ages

Original poster
nailpolish · 04/05/2006 13:28

yoyo, your MIL sounds like a great person, looking after her dh and all. positive attitude etc Smile

should i keep the dd's away from FIL? they permanently seem to have colds

and so what does your MIL do when she feels she is anaemic? does she just phone the hospital? or does she have a nurse who comes to visit? i know im probably thinking way ahead

sorry for all the questions

OP posts:
yoyo · 04/05/2006 16:18

A nurse comes out and does take her blood but I think she has to have it cross-matched or something but I think this might be a specific problem for her rather than because of the lymphoma. She contacts the hospital directly I think. Initially she was given regular transfusions which were booked in advance though.

We live a considerable distance from MIL so don't have the problem of ill children that frequently as we are unable to see her as often as we would like. I would be more careful when he is taking the chemo as obviously he will be more susceptible at that time.

Do ring BACUP. They really are fabulous and you speak to nurses who know their stuff. I cannot recommend them highly enough.

Is your FIL the sort who would take notes during consultations? If not I would encourage him to as they are often given so much info that it can be overwhelming.

Feel free to ask anything. I will be speaking to MIL tonight so can clarify the transfusions with her.

Original poster
nailpolish · 04/05/2006 16:22

yes htat sounds the same as FIL - he gets cross matched and then they have a batch in waiting for him when he goes up every wednesday

dh says his dad had a leaflet from bacup (as well as a million others) so i will have a look when i go to see FIL at the weekend

he says he has a nurse coming in to see him so i think i will volunteer to be there as a second pair of ears

and i think dh should go with him next wednesday to have 2nd appt with the consultant. will get dh to take notes, thanks for the tip

OP posts:
wrinklytum · 04/05/2006 21:53

dear nailpolish
www.cancerbacup.org.uk also www.lymphoma association.org.uk/ forgot the http bit but if you stick "lymphoma" onto google youll get it hope this helps best wishes

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