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marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Lost in a nightmare

Postby marie souter » Sat Dec 21, 2013 8:08 am

Oh meant to say mom found questran sachets very good helping with the itch x they have a sugar free variety docs prescribe them xx

amanda45
Posts: 14
Joined: Mon Dec 09, 2013 5:39 pm

Re: Lost in a nightmare

Postby amanda45 » Wed Dec 25, 2013 11:47 pm

Hi Guys
Thanks again for all the replies the last few days have been a whirlwind Phil is now in our local hospice as his billirubin levels have gone up to 137, the ct scan showed no bile duct blockage so they are at a loss to explain why his liver is failing. They have done all sorts of blood tests but all the usual suspects have come back negative and we are now only waiting on very rare syndromes and viruses. He is eating a little but still very constipated and now yellow. His chemo was cancelled due to the poor liver function. The team at the hospice is lovely but they are now saying that is probably the secondary tumour in his liver reacting at a microscopic level and that unless one of the blood rests shows something there is nothing more they can do. I am terrified and still in shock from the diagnosis which was only 4 weeks ago. They say that if chemo cannot be started he has only weeks. If any body can come up with a reason to why this may be happening please respond. Thanks

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Lost in a nightmare

Postby karen17 » Thu Dec 26, 2013 8:39 am

Oh Amanda I don't have any answers but wanted to send my virtual support to you. My heart goes out to you both. Hopefully the pain will be controlled whilst in the hospice and you will be receiving lots of support. Accept all the support on offer and contact the specialist nurses on this site for further information. Thinking of you and sending big hug.
Karen xx

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Lost in a nightmare

Postby cestrian » Thu Dec 26, 2013 9:12 am

Dear Amanda

So sorry to hear of this latest complication that Phil is suffering - this damned disease is so sneaky. It invariably seems to be some additional infection, growth or whatever that gives us major problems. For instance all my own tumours have been stabilised apart from a little blighter in my lung that had grown on the last scan I had and has caused a small amount of fluid. I asked my specialist why this one was not responding to the chemo and he explained that sometimes lesions can mutate and thus the chemo that deals with the other tumours fails to control the mutated lesion.

I do sincerely hope that they can come up with the reason for Phil's problem but I guess that this time of year resources will be limited - best of luck to both of you. We are all sending our love and support and praying for better news for you.

Love and Peace

Mike x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Lost in a nightmare

Postby Cathy » Thu Dec 26, 2013 12:43 pm

Hi Amanda

I am so sorry to hear of these complications. It's such a difficult time of year, not only as everyone else seems to be having such a great time (not necessarily so) but everything seems to go so slowly as well. My partner was diagnosed around the same time last year.

Like Karen I can't offer any answers but wanted to post something to you and to say that I hope you are getting lots of support yourself and that they can get to grips with this current problem and get Phil on the road to being able to start treatment very shortly.

Cathy xxx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Lost in a nightmare

Postby J_T » Thu Dec 26, 2013 5:59 pm

Amanda, just wanted to add my support along with the others.

Hope Phil is at least comfortable at moment and that the medics can sort out his problem.

Sending you some virtual hugs.

Julia x

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Lost in a nightmare

Postby marie souter » Fri Dec 27, 2013 12:06 am

Hi Amanda,

How is Phil doing? Have been thinking of you over xmas... I do hope they find out what is causing his problems and soon for you all xx

Thinking of you

Marie
xx

amanda45
Posts: 14
Joined: Mon Dec 09, 2013 5:39 pm

Re: Lost in a nightmare

Postby amanda45 » Fri Dec 27, 2013 10:30 pm

Hi Guys
We had a meeting today with the palliative consultant up at the hospice and she has organised more blood tests an ultrasound and an appointment with the oncologist for next Thursday. Phil continues to deteriorate daily and is now up to 60mg of 12hr release MST and oramorph for breakthrough pain, he is till terribly constipated and yellow. I have asked for a second opinion on the ct scan and ultrasound that showed no bile duct blockage as the original tumours in both the pancreas and liver where initially missed in our radiology dept.
The hospice are brilliant, so caring and helpful but all the bloods they have taken upto now show no infection and the main problem is the failing liver function for which they have no explanation. Hopefully next weeks ct will show something.
Many thanks for all the support.
Amanda

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Lost in a nightmare

Postby Cathy » Fri Dec 27, 2013 10:40 pm

Hi Amanda

Everything crossed that they do. They ought to be able to try different things for the constipation, sometimes I think they need to jig things to find the right combination... My partner has been very similar and is now on a combination of stimulants and stool softeners (senna, ducosate and movicol)... Seems to be working to a reasonable extent.

In the meantime I hope you are getting a lot of great support too and have people around to help you.

Thinking of you.

Cathy xxx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Lost in a nightmare

Postby J_T » Sat Dec 28, 2013 12:05 am

Hi Amanda, good idea to get a second opinion, seems odd that there is no blockage showing yet Phil is jaundiced.

Good luck at your next appointment and I do hope Phil begins to feel a little better.

We all know how tough this is for you too, so take care of yourself.

Love
Julia x

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Lost in a nightmare

Postby marie souter » Sat Dec 28, 2013 10:16 am

Hi Amanda,

The cocktail of laxitives and softeners Cathy mentions worked for my mom xx Also I hope they find out soon whats causing the jaundice ..

love and hugz

Marie
xx

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Lost in a nightmare

Postby Sueba » Sun Dec 29, 2013 12:05 am

Hi Amanda
Like the others I just want to offer my support to you the ought this nightmare you are living!
Mick too had jaundice on diagnosis but showed to be the tumour blocking his bile duct so was relieved by a stent.
This however would have shown up on a scan.
Sending my love
Sue
X

amanda45
Posts: 14
Joined: Mon Dec 09, 2013 5:39 pm

Re: Lost in a nightmare

Postby amanda45 » Sat Jan 11, 2014 11:24 pm

Hi Guys
sorry its been a while since I posted but the last few weeks have been mad. The 2nd ultrasound eventually showed the bile duct blockage so into the hospital we went (although we had to wait 4.5 hours to be admitted as nobody knew he was coming and couldn't find his medical records!! That night before I left they attempted to give him a blood thining injection(the night before the procedure) and in the morning tried to feed him although he was nil by mouth! To say we have no confidence in this hospital is an understatement. He eventually went o have his stent fitted through endoscopy but after 6 attempts the gave up and returned him to the ward. The following day they did manage to insert the stent by going in through his side although this was after the nurse in radiology brought us his consent forms and whilst explaining the procedure we realised she was talking about the wrong one (a drain and not a stent) and so this had to be corrected. So after two procedures in two days he spent the following day in terrible pain and had to have diamorphine injections to relieve it. We managed to get him released the following day and back into the hospice so they could provide the much needed nursing care. They really are angels and his liver tests continue to improve, he is eating again and they are sorting out his pain meds (upto 100mg of MST twice a day on 12 hour release and gabapentin). His chemo is scheduled for two weeks as long as his liver tests continue to improve. Constipation is still a problem but they are trying different laxatives and stool softners to sort this out. I really don't think he would still be with us if it wasn't for the hospice and although it wasn't our ideal choice for Christmas and new year it was the best place for him. We have fingers and everything crossed that the stent continues to work and we will start chemo in two weeks.
Amanda

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Lost in a nightmare

Postby Bee » Sun Jan 12, 2014 12:23 am

Hi Amanda,
I have been following your post but haven't opted before. Glad to hear things have improved and the jaundice and liver function is improving , fingers crossed chemo can get started soon. I hope in the middle of this all you are finding time to look after yourself aswell.

Bee xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Lost in a nightmare

Postby Slewis7313 » Sun Jan 12, 2014 11:34 am

Amanda, I read your latest entry with amazement that the treatment you received. Talk about the left hand not knowing what the right is doing! I am however glad they finally managed to get the stent in, Phillip was made comfortable by the Hospice and the medication is being managed properly. I hope things continue to improve and that the chemo can go ahead as planned.

Take care

Steve
X