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SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: How long to get definite diagnosis

Postby SusannaUK » Tue Sep 09, 2014 11:04 pm

Hi Fiona,
I'm sorry to hear that James is not well. But glad you felt better this morning. How is James now? How was he after he woke up? I hope today was a better day.
Thinking of you!
Susanna x

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: How long to get definite diagnosis

Postby Bowie » Wed Oct 22, 2014 1:18 pm

Hi, everyone it's been a while since I posted, but have been really busy with PC, family stuff and work. It is 30 weeks tomorrow since James was diagnosed and in that time since starting chemo Abraxane and Gemcitabine, now on 5 th cycle, has done fairly well, but been plagued by diarrhoea. Well, thanks to Leila and her research and advice on SIBO, he is finally better. I read her post and told James, he contacted his GP and after talking with a Gastroenterologist he was duly given antibiotics, without the need for a test, because apparently it's often false negative and he is much better. This has helped him feel better and reduced the weight loss, so a big thank you. In terms of his blood count continuing to be low, again from advice on here, he has asked for regular self-injections, which he self administers for 3 days before each treatment and again it seems to be working. Finally, again after advice on here he is now taking a low dose of steroids every day and his tiredness and mood swings have improved. This week he is busy helping our builders renew skirting and doors, so a big improvement on before. I do worry, however, that all of these things which have helped him enormously are things he has had to ask for and then they are forthcoming, but what if he was too vulnerable and didn't have the help from all of your great people on here? Also, again after help here he has finally got his blue badge parking permit, had to do it himself with no help from Macmillans, but this means he can drive to treatments, do the shopping and generally get out and about without having to worry about parking and walking back carrying stuff etc. his quality of life is much improved. Today he got the results of his latest scan and there is little change, all stable, with a very small shrinkage of one of the secondaries. We are really pleased and hoping to think about a holiday. The oncologist, a different one again, we don't ever seem to see the same one twice, has recommended continuing chemo for as long as it's working and with a possible further reduction of James gets too tired. So lots to think about, but we are hoping to get a holiday booked, again all of you have helped his confidence in thinking about this and the Oncologist has said that providing we stick to Europe we should be fine for insurance etc, just avoid the states.

Sorry I haven't been commenting on others posts, I have been dipping in and a little too emotional sometimes, but have passed on loads of your advice to James and he always asked about quite a few, especially Leila's dad. Thinking of you all and thank you for your help, which has literally been life saving. Fiona X

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

Re: How long to get definite diagnosis

Postby Cathy » Wed Oct 22, 2014 8:32 pm

Hi Fiona

This is great news!! Well done both of you.

I agree, I often used to think, with my partner, how do people cope who have no-one to advocate for them? It makes me shudder.

Re going on holiday, we had 2 European holidays last year. The first time we went with bog standard travel insurance and took the risk. I checked things like availability of medical assistance and the ease of us getting a flight back early if needs be and obviously had a EHIC card. Wasn't needed. The second time we insured with Insure with who gave us a quote of £84 for us both for a week which included Jnathans PC plus his PC related diabetes, irregular heartbeat... Couldn't believe how cheap it was BUT you need to not be receiving treatment when you travel.

All the very best to you both

Cathy xx

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: How long to get definite diagnosis

Postby SusannaUK » Thu Oct 23, 2014 12:09 am

Hi Fiona,

It's great news! It's really good to read that James is doing well and you are thinking of holidays. I hope everything will go well.

All the best to you and James,
Susanna x

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

Re: How long to get definite diagnosis

Postby Slewis7313 » Thu Oct 23, 2014 6:39 am

Hi Fiona, great to see that James is doing well enough for you to consider a Holiday. It is sad to see that you are having to drive 'the system' to get things done, but good to see the Forum working at it's best to arm you with useful information to get things done. It is an amazing place.

Enjoy your Holidays wherever they may be.

Steve
X

Fifi

Re: How long to get definite diagnosis

Postby Fifi » Sun Nov 09, 2014 9:07 pm

Hi Fiona,

Your post made me cry, so so lovely of you to say. It really does mean so much to me. To know that I helped someone who was suffering, I can't tell you how that feels. Is James still taking the antibiotics or did they work straight away? Thank you both for thinking of my dad, it really means a lot. We all need this forum and the love and hope we can all give.

Leila xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: How long to get definite diagnosis

Postby nikkis » Sun Mar 01, 2015 11:01 pm

Dear Fiona,
Just wanted to say it was good to hear from you the other day. I am always thinking about you and James an wondering how you are. It sounds like you are soldiering on, with very little support, I imagine you are exhausted. Please tell James, Paul wasn't keen on hospice involvement, but they really were about helping us to enjoy living, and letting Paul make his own choices.
Lots of love,

Nikki

Fifi

Re: How long to get definite diagnosis

Postby Fifi » Sat Feb 06, 2016 10:56 pm

Hi Fiona,

Was just wondering how James was?

Hope you are both ok?

Leila xx

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: How long to get definite diagnosis

Postby Bowie » Mon Apr 24, 2017 8:54 pm

Sorry I haven't posted for ages, it's been really up and down. I did keep peeking in and as more loved ones were lost I didn't have the will to keep reading. Well James is still here, it was 3 years on 24 March, since he was diagnosed with stage 4 PC with mets to lungs and adrenal glands. Then the diarrhoea set it and he continued to lose weight. The Macmillan nurse was worse than useless, if we had listened to her James would have died a long time ago. Luckily Leila on this site saved his life by researching SIBO. James insisted on a referral to a gastroenterologist and has been taking anti-biotics ever since and he did so well. Life was restored, not normal, but pretty good. James has now stopped chemo, after several types, Ambraxane was for him by far the best, in that the outcome lasted longer and with few side affects, however, he is struggling now. He is still at home and does get up each day and we even went out for a meal this week-end, but he is very tired, very swollen and struggles to get about. I guess my main message to everyone is no one actually knows the outcomes and do push and challenge. I know James had a particularly poor experience with a Macmillan nurse, but it does seem that the amount of help on hand is limited and it is down to individuals and their loved ones to look into what could help and then ask for it. James' oncologist and GP have both been brilliant whenever he has asked for anything they have provided it, but he has needed to ask first.

We have a brilliant local hospice, that has been a great support and they are helping us to use James' experiences to help others.

I wish each and everyone and their loved ones affected by this devastating disease much love and that more is down to improve the outcomes for all. Fiona X

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: How long to get definite diagnosis

Postby sandraW » Mon Apr 24, 2017 10:08 pm

Hi Fiona,
Lovely to hear from you, sorry your news isn't better thought.
This bloody disease is relentless it just keeps on rearing its ugly head, no matter what you throw at it. James has done so well 3 years is amazing, I am glad to hear you are getting some support from the doctor's too, as well as you giving support to others through the hospice.
Its actually 2 years today since I lost Trevor,even though he was only in the hospice for a few days they were amazing, it was just like being at home but with all the support in the background it took all my worry and stress away.
Sending love to you both and remember we are here should you need us take care sandrax xx

Marmalade

Re: How long to get definite diagnosis

Postby Marmalade » Tue Apr 25, 2017 12:24 am

Hi Fiona, it's great to hear from you and about your good experience with GP and hospice. We were really lucky with ours too and it makes a huge difference. It must be really hard to know when to suggest treatment and medication especially if the next stage of medication means a lower amount of consciousness, less mobility etc.

I hope the team are able to keep James comfortable and that you are getting the very best support.

Marmalade x

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: How long to get definite diagnosis

Postby stepuha » Wed Apr 26, 2017 9:01 am

Dear Fiona, thank you for your update. It is stories like yours that give me hope.
Perhaps you could consider looking into Precision Panc program, recently launched in the UK. They do genetic analysis of the tumor and suggest treatment according to that. It may not necessarily be chemo, if I understood correctly. I understand though that after 3 years James is tired of treatment and may not wish to do anything else. May I ask if James had any breaks in chemo treatments or was it continuous chemo? I think different oncologists have different views and it is difficult to decide on whether I should accept a break if it is offered or fight for continuing treatment.
Many thanks in advance.
With love,
stepuha

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: How long to get definite diagnosis

Postby Didge » Wed Apr 26, 2017 7:18 pm

Lovely to hear from you, Fiona. Sorry to hear James is not good but glad he is still here. And glad that our lovely Leila was able to help in that process. Those who research tirelessly are so appreciated by others! x