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Original poster

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

36 replies

imaginaryfriend · 30/01/2008 21:53

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.

OP posts:
Octothechildherder · 30/01/2008 21:58

Oh dear

Maybe research lymphoma or hodgkins/non- hodgkins lymphoma and see if it seems relevant. I think (but am not an expert) it depends on whether the cancer has spread to the lymph nodes?

Elibean · 30/01/2008 22:11

I'm so sorry

It doesn't sound great, and as you say, very complex, but FWIW I have one good friend who had non-Hodgkins lymphoma in several places, and responded very well to chemo. He's been in complete remission for five years now (and never had surgery, just chemo). I'm sure the prognosis depends a lot on the type of tumour, on your friend's response to chemo, etc.

As for autoimmune hep, my DSM had it a few years ago but responded to steroids (immunosuppressant drugs, presumably what your friend is/was on) and no longer takes them and is fine. I know that long term suppression of immune system does leave you more at risk of infection and/or tumours, not sure about them actually causing them though.

It must be so hard not being able to get more information from or about your friend, I hope you get to see her next week and that she IS in with a chance. xx

Original poster
imaginaryfriend · 30/01/2008 22:31

Elibean I think that my friend's dh was saying that she'd been given too high a dose of immunosuppressants (are they just steroids then?) and this had led her cells to go crazy. I was led to believe that my friend's autoimmune hepatitis was life-long, she nearly died when she was diagnosed 3 years ago, they gave her a 30% survival rate but that was largely because they took such a long time to diagnose her and I think her condition had become quite serious in the meantime. She did mention that the illness can respond well to medication if diagnosed early.

I feel very in the dark. But my feelings must be nothing in comparison to what they're feeling.

OP posts:
Original poster
imaginaryfriend · 30/01/2008 22:33

By the way, surgery on the tumours isn't an option as there are so many of them and one is apparently in the middle of her language centre.

OP posts:
Twiglett · 30/01/2008 22:46

immunosuppressants are systemic drugs which work to supress the immune system .. they are quite strong drugs .. DH, for example, takes methotrexate (a chemo drug) at low doses and needs blood tests every 2 weeks

steroids are different

Original poster
imaginaryfriend · 30/01/2008 23:03

Thanks Twiglett, I thought they were different drugs but from what one of the earlier posters said I thought that they might be the same as steroids. I'm very clueless I'm afraid.

Can I ask what your dh takes them for / what he needs the blood tests for? Do you know what the risks of taking too high a dose for too long might be?

OP posts:
onlyjoking9329 · 30/01/2008 23:14

so sorry to hear about your friend
i know a bit about brain tumours, if her tumours are in operable then she may get treated with chemo not sure if she would get radiotherapy, i know a bit about chemo and radiotheraly.
the macmillan forum has a section on brain tumours they are a lovely bunch and will be happy to help if they can.
sending you hugs
OJ

Original poster
imaginaryfriend · 30/01/2008 23:29

Thanks OJ, having followed the story of your dh I know you've been there and back!

I'm really confused about many aspects of my friend's condition though. I don't know if the tumours would be considered benign or malignant. I don't know if the chemo has a chance of getting rid of them completely or rather of buying her time.

OP posts:
Twiglett · 31/01/2008 09:26

IF you're obviously in pain over your friend and you are, unsurprisingly, reaching around for reasons and answers. I think sometimes there aren't any reasons and there aren't any definitive answers.

I am so sorry about your friend, you will have to take it one day at a time much as no doubt she and her family are. I wish you all the best of outcomes. I would say there is always a chance until they tell you there is no chance, and then there's a slim one.

Can you have the little boy round to play? Can you send them some food that they can just heat up?

(DH has an auto-immune arthritic condion)

Elibean · 31/01/2008 14:36

Wise words from Twiglett

IF, sorry if I confused things re steroids - they are usually (according to all I learnt when my DSM was ill) first line treatment for autoimmune hepatitis, and are ONE form of immunosuppressant drug, so I wrongly assumed that was what your friend was on. I took a steroid drug to suppress my immune response during first trimester of both pregnancies, to avoid recurring miscarriage - they are also used for transplant patients etc. But as Twig says, there are others too.

Will be thinking of your friend and hoping for the best.

madamy · 31/01/2008 15:13

ok - gotta do school run but sounds like she might have 'cerebral non-hodgkins lymphoma'. Rare, but treatable (potentially curable but long term effects due to brain being damaged and lots of chemo) - am an oncology nurse and one of our consultants specialises in this so have seen a few patients over the years. Will prob have a fairly complicated chemo regieme and also radiotherapy - for 6 months or so. Will try and post more tonight!

Elibean · 31/01/2008 15:16

Sounds a bit more hopeful then? I'm so glad they have a diagnosis, and a treatable one, at least. Same cancer as my friend's (the one who is ok now) and also my GP had it (and is fine) but obviously in a different place.

Still wishing her loads of luck.

madamy · 31/01/2008 15:17

have a look here www.cancerbackup.org.uk/Cancertype/Brain/Typesofbraintumour/CNSlymphoma#2854

Original poster
imaginaryfriend · 31/01/2008 20:43

Madamy thank you so much, I'll check out that link now. I'm absolutely desperate for help from someone with your knowledge / experience.

Twiglett, they live round the corner, literally, from us and my friend's ds is my dd's 'boyfriend'. I've offered to do any kind of help with the ds including walking to school, picking up, babysitting in the evening so friend's dh can get to the hospital but I think he doesn't want help with their ds. I actually think that having to see to their ds is kind of keeping him going. They're sleeping in the same bed and I think their bond has become very close. So I've made it a permanent, open offer of help. They also have my friend's parents to stay so they're seeing to a lot of practical stuff. The one thing that friend's dh has seemed keen for me to do is to see / text / phone my friend. I kept making all these offers and he was shaking his head, then when I suggested she might like a visit his face lit up. So I've been focusing my energy on her. I've actually had some long chats with her dh this week and grown to really like him, I thought he was distant and moody but there's another side to him and he so loves my friend. They've been together for 16 years.

Her bone marrow tests have come back negative. That's good, no? It seems that the immunosuppressants might have caused the tumours and that they have a cancerous element to them if that makes any sense.

OP posts:
Original poster
imaginaryfriend · 31/01/2008 22:08

Would all brain tumours that have lymphoma tissue in them be classed as Non-Hodgkin's Lymphoma?

OP posts:
onlyjoking9329 · 31/01/2008 22:46

have a look on the brain tumour forum, there is one lady i know on there that had this, she is currently in remission.
see here

Original poster
imaginaryfriend · 31/01/2008 23:12

Thanks OJ. Did your friend have it due to autoimmune hepatitis? Ill be hopefully seeing my friend tomorrow or maybe after the weekend.

I'm struggling slightly to know what to say to her. I think I'll let her take the lead and watch her closely to see if there's anything she seems to want to say / not say?

OP posts:
madamy · 01/02/2008 10:00

One of the problems with medicating against an autoimmune disorder is that the treatment 'tones down' the body's natural immune system to stop the body fighting itself thus controlling the autoimmune disorder.

Malignant cells are opportunists and take every advantage to divide and grow, so a weakened immune system is an easy ride for them. If it is a lymphoma, one of the risk factors is a weakened immune system although it develops in people whose immune systems are normal too.

Yes, lymphoma in brain tissue will be non-hodgkins.

Negative bone marrow also good - NHL can be subclassified (gets a bit complicated here!) and if bone marrow is involved is treated differently as it's the actual making of the cells that has 'gone wrong' rather than the dividing of the cells later down the cell cycle.

If you can find out any more about her treatment etc I'll be more than happy to fill you in some more! Chemotherapy treatments usually have an acronym - the one I'm used to seeing for CNS NHL is 'CHOD B VAM' or 'B VAM'.

Original poster
imaginaryfriend · 01/02/2008 12:07

Thank you madamy, this is such a help.

Will you keep this thread on your list as I no doubt will have lots of questions to come. My friend hasn't started chemo yet. I won't get to see her now until next Tuesday or Wednesday as she's too poorly today. Her dh said she's been given some medication that's making her vomit non-stop. Apparently she's meant to have an anti-emetic with it and they forgot to give it to her this morning

OP posts:
bozza · 01/02/2008 12:12

Is there any sort of little things you could perhaps do so that your friend knows you are thinking of her. I am not sure quite what she is capable of, but things like sending flowers, or a magazine or handcream or whatever. Just a sign that she is in your thoughts.

Original poster
imaginaryfriend · 01/02/2008 14:18

I've sent flowers and dd made her a card. Her dh has been fantastic at covering all the things like magazines / books / her daily needs.

OP posts:
bozza · 01/02/2008 20:31

While it is good that he is coping (and it sounds like practical things are his coping mechanism) it sounds like it is hard to find a way to help. for you.

Original poster
imaginaryfriend · 01/02/2008 22:13

Yes it is bozza you're right. He's a very proud man and it's taken a lot to get him to even open up and talk to me. He did describe me as an 'ally' the other day which made me think I must be helping in some obscure way.

It's their ds' 5th birthday party this Sunday. My friend will be utterly gutted to be missing it, she dotes on that little boy. Her dh said she'd begged to be let out of hospital for a couple of hours for the party but they refused as she might have a seizure again.

OP posts:
bozza · 01/02/2008 23:09

Well I would imagine in that case that the best thing you could do would be to attend the party and take lots of photos. Your friend may want to see them or may find it too painful, but at least they are there should she wish. Her DH might be too busy.

TBH it sounds like you have done really well to get him to open up as he as. You do sound like a good and concerned friend.

Tamum · 01/02/2008 23:14

Steroids are immunosupressants, most definitely. Drugs like methotrexate are too, but they tend to be used as steroid sparing agents. I'm really very sorry about your friend. It doesn't sound as though there is much hope in the long term, heartbreakingly, but there may well be things they can do to prolong her life. It's so sad about her ds