A close friend is very ill, is there anyone medical about who can point me in the direction to research her condition?

[imaginaryfriend]

My dear friend is currently in hospital. To sum up, she became ill very suddenly 2 weekends ago when she started fitting and fell unconscious. Her husband dialled 999, they took her in and scanned her brain and found 8 tumours. She's been in hospital since.

As you can imagine, she's on my mind constantly. My dd is at school with her ds so we see him and his dad quite often at school. My situation is that I don't know her husband terribly well, he's not at all forthcoming and I have no right whatsoever to keep asking him about my friend. She's too unwell for visitors at the moment but she's texted me and all being well is keen for me to visit next week.

Her medical history is quite complicated as she has autoimmune hepatitis which she was diagnosed with around 3 years ago. Since then she's taken immunosuppressant medication as well as steroids and maybe other things but that's all she ever mentioned to me. It seems from what her dh said that the immunosuppressant meds might have caused the tumours and that on biopsy they have lymphoma cells in them. My friend's been given a 6-month central line so they're assuming she'll have chemotherapy. To be honest I think they're very frustrated with the lack of answers they're receiving from the hospital but it does seem like a very complex case.

Ok. The question I can't ask her dh (and would never ask him) and I am loathe to ask but need to. If someone has 8 inoperable brain tumours which have some lymphoma cells in them, is this terminal? Can she survive? I really need to know if she's in with a chance or not.

I so want to see her.

Tamum, don't say that! Not yet at any rate, not until we know more for sure.

Bozza, yep, I've got the digital camera loaded up for Sunday. I was thinking how I'd really like LOTS of photographs if I had to miss dd's party. It'll be horrible for her to miss it, they were planning it months ago

Immunosuppression makes you much more susceptible to cancer.I have been on them for 24 years and had a vulval tumour caused by them.The body produces no anti bodies so tumours are free to grow at an alarming rate but withdrawal of the meds can cause remission.I had the tumour for 6 yrs and then I was taken off the drugs and it duisappeared only to come back with a vengeance when i restarted them 3 yrs later.Have they talked to her about stopping the drugs to see if they shrink?

nh, they've stopped the immunosuppressant drugs that they think caused the problem while she's in hospital but they're giving her more steroids to shrink the tumours in her brain, so I don't know if that all sounds like a total contradiction if steroids are immunosuppressants. I'm very confused about it all - if they stop the immunosuppressants won't that mean that her autoimmune disorder gets worse? It can lead to Cirrhosis of the liver if untreated.

It's her ds' birthday tomorrow. I can't bear to think how she's feeling right now.

The steroids are essentially really powerful anti inflammatories and although they do lower teh white blood count they don't have the same cancer causing efect as other immunosuppressants.Stopping them may cause her body to fight the tumours itself.My tumour was caused by a virus and when they stopped the immunosuppressants it shrank to virtually nothing.Her other condition may flare without them but the extra steroids may cover her.It is all really complicated and different for each person.I really hope she gets the best treatment xx

Thank you nh. I feel she's had such a hard time of it and she's such a positive soul. She's in Kings College Hospital so hopefully she's in good hands.

hi, don't want to butt in, but just wanted to say after skimming the thread that inoperable does not mean the same as incurable or untreatable......and as noddyholder rightly said it's different for every person.
if u know which ward she is on why not send a card to the hospital? that will let her know you are thinking of her and lift her spirits for a least a few minutes.

trishpops, that's what I'm hoping, that inoperable doesn't mean the worst.

I've sent lots of cards, flowers etc. We've also been in touch by text. She's really not feeling well though so I don't want to hassle her or make her feel bad she can't reply to me. She's like that, she would I think.

My friend's ds' party was today and her dh did a very good job. The ds is looking very pale, withdrawn and nervous though, I was quite surprised by how he's changed.

They have had some really stressful news too, the hospital wants to repeat the biposies from the brain tumours as they have found tissue there that 'shouldn't be there' so they think they didn't get a biopsy from exactly the right spot. Last time the biopsy process took them 6 hours under general anaesthetic so friend's dh said she's really unhappy about having it repeated.

But it leaves so many questions again. If they found lymphomas in the brain tumours last time then isn't that just enough to start treating her?

imaginary friend, the thing with cancers is that there are different types and therefore different treatments are needed. i'm sure you have heard differernt words used to describe cancer such as carcinoma, lymphoma, etc. these are different mutations that all respond better to different types of treat ment. i'm guessing that what thye have found is not lymphoma, therefore they don't want to commence a treatment which may not be best for it........i'm really no expert at all tho, not even a trained nurse and a little knowledge can be a dangerous thing so i hope i'm not muddying the waters. it's so frightening when a loved one is in hospital and unfortunately these days we all have very little trust in the NHS, but rest assured that a young mother will be high on the list of priorities in her consultants mind, and there is NO WAY that the team would subject her to such a serious operation again unless they thought there was a really ggod reason i.e. finding out what's going on in there and curing it! all is not lost. sounds like you are doing a sterling job of being a friend by the way.

Thanks trish. Yes, cancer is a bewildering and frightening world which so far, thankfully, I've had little to do with. My friend's dh said there was definitely lymphoma in the cells but there were also some cells which they couldn't identify - they've taken 3 weeks trying to read the biopsy! Worryingly my friend's dh said that my friend became very angry with the consultant when they said they'd repeat the biopsy and shouted at him to 'get away from me'. He said he thought part of that was due to the huge amount of steroids she's being given that make her feel aggressive. She's usually such an even-tempered person it's hard to imagine. It's very difficult being a loving friend and feeling so far away and so helpless.

it is difficult. but simply by remaining in contact you are helping her. lots of people hide from serious illness in friends because they don't want to cause upset, or can't handle it themselves. keep up the good work.
unfortunately in regards to your friends agression it is very common for people with brain tumours to behave out of character, i suppose it's a combination of the tumours, medication and the emotions she is feeling. this may worsen before it gets better, sorry.