pleural effusion, non-invasive procedures?

[SarahB]

Hi there
My partner (he's 51) has acinic cell carcinoma of the palate which is spreading aggresively in his lungs (he had the primary site and some lymph nodes removed in Feb this year and was told not to worry as this is an indolent cancer and he'd probably have 15 years before his lung mets became symptomatic??!)
He has confirmed pleural effusion and his lung capacity is less than 50%. His symptoms of bereathlessness came on over 3 days, from being not at all breathless to breathless on walking to the bathroom etc.
One of the mets is pushing on his right atrium and trebled in size to over 5cm in 3 months.
He's had pretty terrible treatment in hospital as he's always required to stay on trauma and medical wards and not oncology wards. (Rare head and neck cancers have this problem I guess?) He was told that the chest drain he required could not be done at home as the risks were too great, so he needs to stay in hosp. The drain would take 72hours, with associated risks of infection and lung collapse. He has been told by different chest nurses (the doctors were 'too busy' to talk to him) that it will almost certainly (95%) refill quickly and that it will certainly refill over a month or so.
He has declined the procedure and is learning how to retrain his thought patterns into slowmotion. He is very depressed and will only see me and wont leave the house (we're working on that though and he recognise he needs to get out at least into the garden)
We are looking at alternative therapies to help his natural death become less strenuous. So far we are using Bach Flower Remedies and I think they are helping his mental health (although everyhour is different) and they should help with some of the fluid retention, as are the diuretics and steroids.
If anyone reads this and can think of any other non invasive procedures we can try for symptom relief, please could you let us know as our referal to Marie Curie is not until the 12th July
Any suggestions will be greatly accepted
Thank you in advance
Sarah x

[marilynrowan]

Dear Sarah:

My husband had pleural effusion from a different rare cancer and he had the fluid tapped. He had the procedure in the hospital but as an outpatient and did not have to stay overnight. Mike said the procedure was not painful and it certainly helped him to breathe better. He had the procedure done several times and never experienced any complications from it. If I can answer any other questions, please let me know......Marilyn Rowan

[SarahB]

Thanks Marilyn,
I think the amount of fluid determines whether it is an inpatient or outpatient procedure. I suspect the nurse who was outlining the risks was really painting a worse case scenario (he kept on talking about 5 or 6 litres drained out.)
He's going to have another x-ray to see what benefit the water tablets are having and he's going to discuss it with the palliative care consultant (from the Marie Curie hospice) on Wednesday. If he can have a needle aspiration instead of a full drain that would be very exciting and he would definately agree to that, if the fluid is in pockets then it's a different story again, but the Marie Curie doctor has a long consltation time and hopeflully will know what's best?
That's certainly hopeful news though, thanks again Marilyn, and good luck
Sarah xx

[marilynrowan]

Hi Sarah:

From what I understand, the inpatient procedure involves a drain being placed and left in for a couple of days and some sort of a talc inserted so that the fluid does not build up again. From what we were told, if the chemo is working, the fluid would not build up. Mike had the outpatient procedure done a couple of times and they took many liters. If I recall they don't like to take too many liters at one time because of an imbalance in the body. He too took water pills and had to carefully watch his fluid and sodium intake. Hope this helps and best to you with your appointment on Wednesday.....Marilyn

[SarahB]

Well this is how the story goes.
The very lovely palliative care consultant confirmed that a needle drain would be of very little benefit and that a full drain would need to be carried out. The effusion is extensive around the right lung and growing.The tumours are extensive and growing fast in the left side and in the lymph imbetween the lungs. Brian is very weak and the consultant agreed that it was questionable whether there would be any real benefit to Brian's quality of life following a drain.
Instead she's looked at his meds and sorted out a combination designed to lift his spirits in the day and help him to relax at night. He wants to write his will and sort his funeral. Then he feels ready to see friends and family until he is too tired to continue.
I am there with him.
Thank you all for your support, I'll pop back in every now and then to cathartically up date.
xx

[marilynrowan]

Sarah, I'm sorry to hear that they felt the procedure would not benefit Brian. The two of you were on my mind yesterday and I kept thinking and hoping throughout the day that they could do the procedure to make him more comfortable. Thinking and praying for both of you as you undergo this difficult time.....Marilyn

[SarahB]

Hi Marilyn,
I never asked, what happened with your husband? I'm ashamed that my own situation has made my brain so selfish at times..

The steroids and/or the anti-depressants lifted Brian for a couple of days, but he's back to bed again now.. We are reviewed in Marie Curie this afternoon and then we'll see. A hospital bed is arriving tomorrow which feels like a big deal, but should make Brian's days more comfy.

The constant highs and lows are strange to deal with, and in the midst of it all I'm having to close our business down.

But i'll continue with this weird strength I have found from somewhere..

Thanks again for the support

Sarah

[marilynrowan]

Dear Sarah:
My husband, Mike, passed away four years ago from apocrine (sweat gland) cancer. When he passed away, there was no sign of pleural effusion and he was comfortable but the cancer just overloaded hs body. I stay on this list to see if I might be of help to someone else who is going through what we went through. It is a difficult road to travel and you are doing a wonderful job of holding it all together. It sounds like the hospital bed is a good idea. I think of you often....Marilyn

[SarahB]

I'm sorry to hear that Marilyn, but pleased of course that Mike found some peace.

Whilst Mike's and Brian's diagnoses are hugely different, you're certainly helping me as a point of contact. Thank you.

Brian turned down the hospital bed! He couldn't bear to have it in his flat, he feels like everything is contouring to help him die comfortably, rather than to help him be comfortable in his life.. we'll find the right balance I'm sure.

Take care

Sarah

[marilynrowan]

Sarah:

Mike also didn't want a hospital bed. We managed without it and he passed away in our bed while I was holding his hand and talking to him. We were affiliated with hospice at the time and that was a big help.

Everyone is different and I found that what is right for one person isn't right for another person. I joined a bereavement group for spouses and significant others about 6 months after Mike passed away and we are all so totally different and yet we share the same grief. We are all still friends to this day.

I think of you and Brian often and wish peace and comfort to you both.....Marilyn

[SarahB]

Hi Marilyn,
Brian passed away peacefully on Monday. He was at home and I was there with his son and some good music. It was a very quick final deterioration, and he acheived the death he wanted under the circumstances.
I'm still in a whirl and not too sure what#s going on as I guess will be the case until at least after the funeral.
Thank you for your kind help and support over the last few weeks.
Much love
Sarah

[marilynrowan]

Dear Sarah:
I am so sorry to hear of Brian's passing. I remember those first days well, and I know it must be very difficult for you at this time. My thoughts and prayers are with you both.
With sympathy and love,
Marilyn

[witchylass1965]

I too send you love and light and my very very deepest sympathies at Brian's passing. You know that you did all you could for him and should feel proud of that as indeed should all those who have helped someone with this dreadful disease.To nurse someone until their dying day is the biggest and most sincere act of love you could ever offer.

Love and deepest and most sincere sympathy
Laurie