A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

Dandygal76
Posts: 706
Joined: Sat Mar 12, 2016 9:49 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Dandygal76 » Tue Jan 03, 2017 8:44 am

Oh Ruth, I know the last place you want to go is to the hospital but if you ever suspect an infection then you must go. There is a reason they have the 'golden hour' (I think it is called) that means for cancer patients from the moment they check in they must be given broad spectrum antibiotics within an hour and then the hospital should find the cause. I am sorry if I am teaching you to suck eggs and I am sorry I am blunt but this is because it is often not the cancer that kills the patient, it is infection. Not only does the chemo make you more at risk but the cancer does, and as with everything around PC - especially this blasted one. Please don't get complacent on this. You know I follow a tremendous amount of stories and it is infection nearly every bloody time if not end game PC.

I am glad you are feeling better though and the chemo is cumulative so it does sound as though it is that. Please remember dad if this gets worse for you.. the PCUK nurses got us through every blasted symptom to get dad back to a 'new normal' and he got so bad I thought he was going to throw the towel in. Anticipatory nausea is nasty.. the worst side effect we encountered by a mile but low level lorazapam cured that for dad and it is important that you do everything to nip it in the bud straight away. Lorazapam may also make you feel spaced out for a couple of weeks but that did go for dad. From my research the longer it goes on the harder it is to treat. The patches dad has found relief with are scoperderm and I think you can just get them from a pharmacy so these could be worth a try - that cheap little patch was a golden find for dad (I think it helps with excess saliva etc as well).

xxx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Wed Jan 04, 2017 11:55 am

I know all of what you have said is true Dandygal. Thankfully I am feeling much better now and it does seem to have been a blip over the weekend most likely associated with cumulative chemo. Plus I went out on my bike the day after chemo and fell off whacking my hip on the tarmac. Not the best thing at all and so I don't think that helped, as well as it being very cold and me getting very cold whilst out with friends on the bike.

I checked my temperature yesterday and the day before and it was fine, plus the nausea has alleviated and the intense cold has pretty much gone. I know how important it is to act on any suspected infection and there is that golden hour where antibiotics should be taken immediately. I have some in stock! I have to admit though that when I was feeling so cold and rough on Sunday night all I wanted to do was be in my own bed and sleep. I was so tired and I thought if my temperature is high I really don't want to have to go through all of the ringing the hot line and going into hospital. I would have done it if I had to but the thoughts I had when feeling so rough was complete avoidance and just go to bed.

It will be interesting if the anticipatory nausea returns tomorrow in preparation for Fridays final 3/3 gemcitabine in cycle 5. We will wait and see.

xxx

Marmalade

Re: Mum of 42 recently diagnosed inoperable PC

Postby Marmalade » Wed Jan 04, 2017 8:23 pm

Good to hear you are feeling better Ruth, you must have taken a big thwack falling off your bike!

You are being very good and you obviously know the routine about infections. Good woman for knowing what to do and when but you are our bright star so we all worry and fuss if you are down or a bit poorly.

It must be horrible anticipating this noxious stuff and just because you are a star it doesn't mean it's not awful and that you don't feel fed up or angry or miserable with it sometimes. You do so well that sometimes it's easy to forget that this is a very serious business and a mental as well as physical drag. I hope it helps to know that so many of us are hanging about in the background pushing from the fourth row (one of Louis' favourite sayings), willing you on and here for the bad days as well as the good.

You are very much in my thoughts, M xxxx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Elaine123 » Thu Jan 05, 2017 12:14 pm

Ruth the last thing you needed was a fall from your bike eh! Glad you didn't do too much harm. I'm on to wish you all the best for Friday will be thinking of you and will hear how you get on....good luck
Elaine
X

Wife&Mum
Posts: 371
Joined: Thu Dec 03, 2015 3:12 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Wife&Mum » Thu Jan 05, 2017 12:35 pm

I too am pushing from the fourth row Ruth, and hope that you get the nausea and chills better controlled. My husband has also suffered very shivery spells from time to time - they usually pass after a day or two. No explanation so far but reading of others' experiences they seem to be quite common amongst the Whippled and a bit of a medical mystery.
xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Wed Jan 25, 2017 10:48 am

Hello all

I think about you all every day although I don't read all the threads in detail. I'm in my last cycle of Gemcap. It will be a scan after this and then 12 week treatment break. I'm keeping busy and active. The strange thing is that I have had no hair loss with Gemcap but over the past few days my hair appears to be falling out!! Not in chunks but more like shedding of hair which I notice on my pillow. I really hope this stops as don't want to lose my hair now!

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Elaine123 » Wed Jan 25, 2017 11:18 am

Hi good to hear from you. That will be great to get this cycle out of the way and have a break wishing you good luck with your scan .Thinking of you
Elaine
X

Dandygal76
Posts: 706
Joined: Sat Mar 12, 2016 9:49 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Dandygal76 » Wed Jan 25, 2017 1:21 pm

Hey lovely lady.. you have enough going on so don't drag yourself down with our crap. Every second you do not do pancreatic cancer is a win for me and everyone else on here. Just live and we will be here if you need us. x

Marmalade

Re: Mum of 42 recently diagnosed inoperable PC

Postby Marmalade » Wed Jan 25, 2017 2:39 pm

Well said DG, of course you want to support your friends but there is no point in dragging yourself down. Sorry about the hair but don't be down hearted, you have faced so much that a new look will not be so big and will not last. You are doing incredibly well and we all love and care for you. M xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Fri Mar 10, 2017 12:32 pm

Hello all. As always I think about you all daily.
I had the results of latest Thorax CT scan and contrast liver MRI scan yesterday. I was feeling unbelievably tense about the results as have now had a months treatment break. I had a bad feeling and was dreading what the doctor was going to tell me. I think my anxiety was compounded by fact that I'm enjoying the treatment break so just didn't want to go back to hospital but also by fact that at my last review a month ago I was told I would be on a 12 week treatment break so in my mind I was thinking if there is progression in disease nothing can be done.

Anyhow the outcome of the results are no spread to lungs which is great relief as I'd got a nagging feeling it could have spread. Two of the tumour's in my liver have shrunk further but two have grown, the most significant being one tumour which was 0.6 mm and is now 2cm. My CA-19's have increased from 100 in December to 400 but this isn't surprising as I'm off treatment. I was told I'm deemed fit enough for further treatment so the plan is to have a port fitted in a few weeks and then start 5FU chemotherapy on the 31st of March with intention to have six month course. I have requested my scans are sent to the London Professor for review for further ablations. I contacted him today and he replied quickly to say he's confident he can perform further ablations. Fingers crossed as the combination of liver ablations and chemo worked well last time.

I'm off to Spain on Sunday for ten days for sun and relaxation before the merry go round starts again! Although looking at the forecast in Spain the weather doesn't look great. Let's hope it changes.
In myself I am feeling very well and managed 26 miles on the road bike last week. I've also developed an addiction to croissants where I have two every morning for breakfast with butter and jam. I've gained a pound so they could be helping.

Wishing you all the best
Ruth xx

Wife&Mum
Posts: 371
Joined: Thu Dec 03, 2015 3:12 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Wife&Mum » Fri Mar 10, 2017 3:17 pm

Hi Ruth
I've been thinking about you and hoping that everything is going well, so it was super to read your positive update today.
Wishing you a sunny and restful break in Spain and continued positive updates.
Love
W&M xx

Justamo
Posts: 385
Joined: Sun Sep 04, 2016 9:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Justamo » Fri Mar 10, 2017 4:00 pm

Wonderful news Ruth, delighted for you. Enjoy your break in Spain, try to blast off Planet PC for the duration, and chill out. (That's not a reference to the weather forecast !)

Love, Mo

Marmalade

Re: Mum of 42 recently diagnosed inoperable PC

Postby Marmalade » Fri Mar 10, 2017 8:17 pm

Fantastic Ruth, so good to read this post as I too had been thinking about you. You can now have your holiday and relax. Much love, m xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Elaine123 » Sat Mar 11, 2017 9:56 am

Hi Ruth positive news and a lovely time in the sun before your plan of action begins.....have a lovely break and will hear from you on your return.
Elaine
X

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Sat Mar 25, 2017 10:23 am

Morning all. I am just sat on our decking having a cup of tea in the sunshine. I love spring. I have a pre assessment tomorrow in preparation for starting 5FU chemotherapy in a couple of weeks. I am booked into a clinic in London on Wednesday to have nanoknife on three liver tumors which showed slight growth after my last scan. At the scan taken end of Feb they were 2cm's but need nanoknife due to their position in the liver. The plan would be nanoknife on Wednesday, then have the port fitted the following week and then start 5FU.
However I've had some unpleasant stomach distinction after eating larger meals over the past week. It's mainly happened at night time and when I've gone to bed and lie flat my stomach sounds like a firework display. My initial thoughts have been is this ascitis due to my liver mets. I have an illeostomy so as horrid as it sounds waste products including gas are passed through my stoma. When I've had these bouts of painful stomach distension I then release lots and lots of wind over several hours. My stomach then feels more comfortable and Flatish again. I'm not sure what's going on but will discuss with the team on Monday and just hope I can still have the nanoknife on Wednesday.

I don't know if anyone else has experienced anything similar?!
Have a good weekend all.
Ruth x