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suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: Chemotherapy options

Postby suef » Fri Jan 04, 2013 2:04 pm

Dear Carole,

So sorry to hear about your ongoing problems. Do keep pushing the NHS, especially over holiday times when key people vanish. And if someone tries to 'blind you with science' make them explain clearly. It is the mark of someone who really knows the topic to be able to explain it clearly rather than just using long words.

It sounds as if you are acquiring a lot of knowledge about PC, and that is really useful because the symptoms and treatment are really not well known in the NHS except amongst those who work in the field. MY GP's practice have never had a case in all the years they have been active (I was diagnosed and operated in Belgium).

Good luck and take care,

SueF x

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Chemotherapy options

Postby DRAD3 » Fri Jan 04, 2013 7:36 pm

Hi Carole
Glad to hear that Clive's liver function has improved and the stent procedure booked - all goods signs that he will continue to feel better and things are moving in the right direction and picking up pace (it is scary to be in need of medical help during the holiday season when all the hospitals are like ghost towns - xmas gets in the way of life sometimes don't you think?!) Fingers crossed that things continue to go well and that chemo can go ahead as planned. Keep positive and take care of yourself too.
love Deb
x

Carole McGregor
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: Chemotherapy options

Postby Carole McGregor » Sat Jan 05, 2013 7:49 pm

In panic mode again. Clive jaundiced this morning and feeling awful. Called NHS 24 who had doctor out in 20 mins. He checked him over and left his number to call if Clive becomes disorientated or confused. He was reassured and feeling better. Gave him a sandwich for lunch and he went downhill after that. Really sick. Now resting but not feeling much better. Presume stent will sort problem but can we wait till Tuesday ? He doesn't 't want me to call NHS 24 again as he doesn't want to be in hospital if there is nothing they can do immediately to help. Feel the weight of responsibility here. I hope I do the right thing. Why do these things always happen at weekends ?

suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: Chemotherapy options

Postby suef » Sun Jan 06, 2013 9:51 am

Dear Carole,

So sorry to hear about Clive's jaundice etc. How is he this morning? How are you?

Hopefully the NHS will be back at work tomorrow, there is really no excuse for this lack of coverage over holidays.

Thinking of you!

SueF

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Chemotherapy options

Postby DRAD3 » Sun Jan 06, 2013 5:38 pm

Hi Carole - have you not got the number for the hospital he is being treated at? Once chemotherapy starts you will probably be given telephone numbers as a matter of course but I don't see why you can't follow this procedure now if you have any concerns. If you have the oncologists name, ring the hospital, ask for the on-call oncologist and explain where you are in the scheme of things and what you are worried about. Not sure what hospital you are under and whether this is possible - let me know. It is important that you get the necessary support - it is very isolating I know and having people on the end of a phone is crucial for your peace of mind - I would start getting together as many names and numbers as you can - hospital, oncologist's office, clinical nurse specialist, macmillan (or similar) nurse - you can't have too much help. Good luck.
love
Deb
x

Trevor F
Posts: 40
Joined: Tue Jun 08, 2010 3:51 pm

Re: Chemotherapy options

Postby Trevor F » Sun Jan 06, 2013 7:36 pm

Abraxane ---- knockout stuff, but it works.

I had a Whipples resection in June 2009 and I keep going

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Chemotherapy options

Postby PCUK Nurse Jeni » Mon Jan 07, 2013 12:47 pm

Hi Carole,

Sorry to hear about the problems Clive is experiencing.

If you are more worried about him, and if he dis-improves again, do take him to your local A+E. Jaundice can make him feel very unwell, and nauseated. Also itchy.

Let us know how you are getting on.

KR,

Jeni.

Carole McGregor
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: Chemotherapy options

Postby Carole McGregor » Mon Jan 07, 2013 10:16 pm

Thank you all for your messages. Clive ended up in A&E late Saturday night (quite an experience given where we live !). He became increasingly unwell, vomiting bile and quite distressed so I called NHS 24 again and they sent a doctor out who called an ambulance. Relieved to report he had his stent procedure brought forward as a result and he is already looking and feeling much better and should be home tomorrow. I had frank conversation with our GI nurse this morning - two months on since diagnosis and still no treatment, unnecessary trauma for Clive avoided if stent had been done sooner etc etc. Tried to be lovely but firm as Sue suggested. Now realise that I have to chase, chase and chase again and not rely on 'the system' to do right by us so my first call in the morning will be to the hospital where Clive is to have his chemotherapy to make sure they have him scheduled in again although I have been assured that this will happen. Trying not to wonder if we have been unofficially put in the 'no hope' category and so given low priority. Have to hold on to my vision of the future - chemo will work wonderfully, tumour will shrivel, surgery will be complete success, our lives will be our own again and our plans for the future no longer on hold. Nice eh ?

Best wishes to you all
Carole

suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: Chemotherapy options

Postby suef » Mon Jan 07, 2013 10:40 pm

Dear Carole,

Good that you are pushing! Be polite but firm! Remember that every patient needs a strong advocate - and that is you!

Take care!

SueF

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Chemotherapy options

Postby susikus » Tue Jan 08, 2013 1:44 pm

Well done Carole on being 'lovely but firm'. And you are already making progress. I think that the NHS is a slow old beast. Everyone means well but the organisation is not slick and you have had the misfortune to need help over the holiday period. Now, hols are all over, it is time to identify the people who can really help you and keep on pushing, do everything you can, leave no stone unturned. Glad to hear Clive is feeling better already - how is he feeling mentally? You and he working together will make a strong team. Good luck and do keep us posted.
lots of love
Sue
xxx

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Chemotherapy options

Postby DRAD3 » Tue Jan 08, 2013 6:45 pm

Hi Carole - so sorry to hear that it took admittance to A&E to get things done - I do get so angry on everyone's behalf - but great news that the stent procedure was done and is making such a difference. My husband was gravely ill one minute, one botched stent procedure sending him further downhill (like you I was unsure who to call, what to do) but second stent worked and it was uphill almost immediately - he told me at the time that he felt a difference instantly - it was amazing! You shouldn't have to chase and I don't think the pace things go is anything to do with being labelled no-hopers, it is just that the NHS is a massive extremely slow moving monstrous machine (I work for it, so I know!) and no-one intentionally misses things but things do get missed and those who shout the loudest get dealt with the quickest, so get yourself a mega-phone! Good on you for keeping positive and planning for good things ahead - attitude does make such a difference I am sure - keep it up and we will be right behind you!
Much love
Deb
x

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

Re: Chemotherapy options

Postby Sueba » Fri Jan 11, 2013 10:36 pm

Hi Carole
I've just read your post about your husband,I hope everything is going to plan now and his stent is in and he is ready for chemo.We are in a similar situation,my 42 year old fit husband was diagnosed with inoperable PC in October,like your husband he had a stent fitted and has just had his 5th dose of the same chemo your husband is due to have.He has it every 2 weeks and takes about 5 hours to administer the first 2 drugs and then comes home with a pump on (with the 3rd infusion)for the next 48 hours.He was pretty sickly the first 2 treatments but seems to be tolerating it much better after adjusting his anti sickness meds.The main thing he's had to deal with is fatigue,he just has to listen to his body and rest,it is a very aggressive treatment but we take comfort from the fact it is getting easier and the optimists in us is hoping the tumour is shrinking.one mor chemo left in this cycle then a scan,then after that we're not sure,another 6 maybe?we will see!
We take each day as it comes,I try not to cry in front of the children,we have 17 year old twins and a 12 year old.They know everything that is going on with his treatment we try to be as open as possible.
Take care and take your strength from positive friends and family around you,I send you all my love and hugs,please don't hesitate to contact me if you want to share concerns on the chemo.Chin up!
Sue b
Xxxx

Carole McGregor
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: Chemotherapy options

Postby Carole McGregor » Sat Jan 12, 2013 1:01 am

Hi Sue

So glad to get your message. I read your posts previously and was immediately struck by the similarities between our situations. I tried to post a message to you but not brilliant at this sort of thing and I think it disappeared into cyberspace somewhere !

Clive's chemo is scheduled to start on Thursday assuming that bilirubin (?) levels are ok. From what you've described it's exactly the same as what your husband is going through. We've been told that main risk is low blood count and inability to fight off infection so me and the kids are all having flu vaccination and I'm going to stand guard at the front door to vet all visitors. If they so much as sniff, they're not getting in ! Our twins (boy and girl aged 12) seem to be coping ok but don't like talking about it. I worry that I'm not giving them the time and attention they need to help them come to terms with whats happening to their Dad. All my energy is spent on supporting Clive and trying to keep everyday life as normal as possible. Does your husband have good days at any stage in his chemo cycle ? Have you been able to do much together while this is going on ? I try very hard not to think too far ahead but sometimes when that fear grips me I have to remind myself that whatever happens in the future, Clive is with me right here and now and I don't want to waste this time.

Sending you and your family every positive vibe I can muster. Our amazing husbands are young, fit and strong with two fantastic women fighting alongside them !

Carole xxx

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

Re: Chemotherapy options

Postby Sueba » Sat Jan 12, 2013 8:27 am

Hi Carole
So pleased to hear from you! Sounds like you're about to jump on the same roller coaster ride as us!
Micks bilirubin levels dropped pretty quickly once his stent was in so fingers crossed your husbands treatment starts on schedule. As I said in my previous post the main thing Mick has had to deal with is fatigue. Once his anti sickness meds were changed, it's funny how you get into a routine, he takes his time getting up in a morning has some porridge, then an hour later some jam on toast (with creon). We are very conscious of keeping his weight up. Then we find we have a small window of time from about 10:30am till 12 pm that we might go for a short walk or nip into town to do some jobs. He's always hungry about 12:30 and then he quite often has a bit of a nap in the afternoon on the settee (daytime tv very boring!) We find we quite often have visitors in an afternoon from about 2:30 pm which is great as they always perk us up! The boys usually get home about 4 pm and he's usually come round by then!! We find this is our routine the first week following chemo but the 2nd week he picks up even more and we find we can go out for lunch etc. We haven't done the cinema as I am worried about him catching any bugs!
Be very firm on that front! Mick caught a cold just after Christmas,he started coughing and his temp had gone up so I rang the hotline number the hospital had given us (we live in the northwest) and he was admitted overnight with the start of a chest infection! He was given antibiotics but it did knock him back a few days!!
He has chemo on a Friday and we find that the mon to thurs before it he is getting back to normal ready to be knocked back down with chemo. Its my youngest sons 13th birthday on Monday and we have booked a meal out in my sons favourite Italian restaurant.
He has lost some hair, but not all of it! And some days he looks better than others. I haven't worked since his diagnosis as I have needed to be with him not just to support him physically but mentally!! We have joked that's its a good job we still get on spending all this time together!
The boys are coping remarkably well, the youngest doesn't fully understand what's going on, which is fine, and the twins have been a fantastic support, very positive!
So like you I have to remind myself he's here now and to make lots of happy memories. I'm trying to just focus on every new day and not look too far ahead for now!
If you would like to privately email me please feel free to ask the moderator for my email.
You are coping really well I will be thinking of you and sending positive thoughts your way!!
Hugs!
Sue B
Xxxxxxx

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

Re: Chemotherapy options

Postby karen17 » Wed Jan 16, 2013 6:20 pm

Hi Sue B and Carole,
I'm a newcomer on here but had to post this message as your situations sound so similar to mine. My husband a healthy fit ( or so we thought! ) 51 year old was diagnosed with inoperable pc at the end of November. He has commenced folfirinox which sound like the same chemo as your husbands and is due to have the 3rd cycle tomorrow. He is tolerating it well with the only complaints being tingling and coldness in his hands and feet and a general feeling of tiredness on day 5. He is still working and we are doing everything as normal really. He tends to react to the chemo whilst it is being infused in hospital so they have to slow it down. We were there 10 hours a fortnight ago! It's an exhusting stressful day plus we have to travel a fair way as chose to be treated in another county. Do your husbands find they have strange cravings for food? Would be interested to know how the chemo affects them and also whether you have looked at other treatment options.
Karen