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

Re: A bit of a worry....

Postby Bee » Wed Nov 20, 2013 8:50 pm

Hi ,

Have been trying to post for days and the site hasn't let me on until day, so frustrating to read posts and not be able to respond!

Cathy, I am sorry the scan wasn't fab, fingers crossed a bit more zapping will get in back under control, as you say at least it hasn't spread. Chris had four cycles of fe cap and all tolerated really well. Gemcitabine is quite a quick infusion so no too long spent in the chemo suite. He always slep for a coupl of hours immediately after treatment and developed a rash which was quickly sorted with piriton, other than that he was fine. Capcetabine tablets were also ok, so fingers crossed Jonathen will be the same. Have you got your start date yet?? Also hope pain control is better, you said pain sounded similar before and docs think pain here is also caused by pressure of enlarged lymph node.

Mike, have a fantastic holiday and enjoy some warm weather, no chance of that here. Sorry to hear you have been dumped from the trial, this blasted PC is a sneaky vermin, glad you are not too worried and keeping positive.

Take care

Bee xx

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

Re: A bit of a worry....

Postby J_T » Wed Nov 20, 2013 8:59 pm

Hi Cathy, as you know we've talked about this and Jonathan has all of us here fighting his corner!

My best to you both. Xxx

Mike, I have responded to your recent news on the clinical trials thread, bummer!

My best to everyone here on PCUK.

Julia x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: A bit of a worry....

Postby InfoForMum » Wed Nov 20, 2013 11:10 pm

Ah bugger it you two. What a disappointment. So impressed by how you both seem to be coping, although when coping is a way of life what's a bit more hey!

Thinking of you both and wishing you good luck with next steps.

Sarah
XXX

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

Re: A bit of a worry....

Postby marie souter » Wed Nov 20, 2013 11:26 pm

Hi Cathy sorry to hear the scan results werent as good as you had hoped x More chemo then? Will be thinking of you and wishing you better results for the next scan
hugz
Marie
x

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

Re: A bit of a worry....

Postby Cathy » Thu Nov 21, 2013 5:39 pm

Hi everyone,

Thank you so much for your replies. It really gives Jonathan a boost when I read them out to him.

Yes more chemo due to start next Thurs. Glad to be offered Gemcap as a 2nd line treatment albeit surprised.

Painkillers have been increased a bit and he is definitely chirpier today (so far).

Mike - I hope you saw my reply to your post on another thread? http://forum.pancreaticcancer.org.uk/vi ... 207#p10741

Yes, I do so hope we will be skiing downhill very soon, as I do so hope you will be (obviously only metaphorically in sunny Lanzarote!)

Lots of love

Cathy xx

Birchen
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: A bit of a worry....

Postby Birchen » Thu Nov 21, 2013 7:53 pm

Hello Cathy and Mike
Terry has actually been on a combination of Gemcitabine with Capecitabine since June. He has had virtually no side effects that he couldn't cope with. We have been very pleased with these results until last week when the oncologist told Terry that although the pancreas tumour had no increase the two tumours in the liver have grown and have now become one. He is currently off all chemo but starts on Wednesday a combination of oxiplatin and capecitabine. Although he seems positive that Terry will be ok we are all worried sick again as had got used to the chemo he was having so it feels like we are starting all over again. Oncologist has also stressed that he wants Terry to touch base with our local hospice which also is daunting as both my Mum and Dad passed away here quiet recently but it is a lovely place and has a very calm feeling.
Anyway hope Jonathan and you Mike can start the type of treatment that is best for you both.
Speak soon love Lyn

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

Re: A bit of a worry....

Postby Cathy » Sat Dec 21, 2013 12:09 pm

Hi all,

I haven't posted for a little while and I can see I have a bit of reading to do to catch up on all the new posts I have missed over the last couple of weeks. Thought this seemed a good time to update my thread.

Will try keep this short;

Over 2 weeks ago Jonathan (my partner - diagnosed with stage iv PC just over a year ago), started to complain of a sore leg. He has recently restarted chemo (Gemcap) and has had clots in the past and was taking clexane. He stopped clexane after 8 months after approval of the Oncologists so we were conscious that there was a risk he might get clots again and obviously aware of what symptoms to look out for.

We consulted the on duty Dr when he was having his last chemo infusion who said he thought the symptoms were caused by a side effect of Oxalyplatin he had been on earlier in the year and not symptomatic of a clot.

A day or so later his GP also has a look and thought it maybe some plaque in his blood and prescribed aspirin. She did say though that she would fax his oncologist and suggest and ECG as thie plaque might have been caused by his irregular heartbeat. So off we trotted home (or limped in Jonathan's case).

That eve (last Monday actually) we got a call from one of his Oncologists instructing us to go immediately to A&E. They had read the fax and recognised the symptoms, the symptoms were of a blood clot in an artery NOT a vein and needed immediate treatment as there was a danger of losing a leg (or life). So, we went to our nearest who referred us eventually to another hospital who had vascular surgeons. Eventually at 5am Tues morning he was placed onto a ward and at about midnight of that night he had surgery to remove a large clot and went onto the critical care ward.

Initially the op seemed to have sorted out the problem as blood flow came back and feeling in his foot and we went onto a normal ward. However a day or so later his foot started to go cold again and he started to lose feeling in it again. They did another scan this Monday and found 3 arteries in his lower leg blocked with a number of clots and so he had to be operated on agiain. In short, if they were unable to get rid of the clots then the best option would be to amputate....

He was operated on first thing Tuesday and, amazingly, they managed to remove each clot and restore the blood supply again. Poor Jonathan was in terrible pain as the blood supply restored itself. Apparently that is usual. The op has been deemed a success tho he may still lose a couple of toes.

Anyhow, he is amazing! He was climbing walls to come home and despite a very sore leg and needing physio he has been forcing himself to get mobile. He was up and down the hospital stairs yesterday on crutches and, after an anxious wait, was discharged yesterday evening, only 3 days after his op So, he is now home!

I don't think we are out of the woods quite yet but fingers crossed for no more clots and no more crisis this year...

This will mean I have time to catch up on all of you :)

Cathy xx

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

Re: A bit of a worry....

Postby J_T » Sat Dec 21, 2013 1:03 pm

Hi Cathy well of course I'm up to speed with Jonathan's current issues and am so pleased he finally home with you, where he should be.

I wonder if that pain is similar, but worse than, when your fingers warm up after a snowball fight? That's pretty painful!

By the way, how much does he weigh now? Lol

Jools x

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

Re: A bit of a worry....

Postby Slewis7313 » Sat Dec 21, 2013 1:29 pm

Hi Cathy, good to see you are back (you have been missed), but sorry to hear about Jonathan's clotting problems. The operations seem to have done the trick and he seems determined as ever to get on with it even though it can't have been much fun for him. Did the Doctors attribute the clots in any way to having stopped the Clexane? My Oncologist is reviewing mine, but seems reluctant to stop it at the moment even though it has now been over 8 months since my Lung clot. Hope everything is now settled for a quiet and enjoyable Christmas.

Take care

Steve
X

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

Re: A bit of a worry....

Postby cestrian » Sat Dec 21, 2013 3:35 pm

Hi Cathy

SO sorry to here of Jonathan's problem with clots - just about all you need, When my clot was spotted my specialist was quite adamant that I would be on Tanzaparin indefinitely so I've been on these injections since July and have no intention of asking for them to be discontinued. He did stress that the chemo and the cancer itself can greatly increase the risk if clotting and t b h I don't find them too much of a problem.

Anyway I'm pleased he's home where he wants to be in your loving care and hope all goes well from now on.

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

Re: A bit of a worry....

Postby J_T » Sat Dec 21, 2013 7:12 pm

Just thinking that comment about weight looks baaaad but hopefully Cathy knows what I'm talking about! x

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

Re: A bit of a worry....

Postby Cathy » Sat Dec 21, 2013 7:55 pm

Hi folks,

Thank you for your comments.

Steve, they didn't say but he is now on injections long term. In retrospect I wonder if we ought to have questioned the Oncs decision more at the time. He was put on heparin in the hospital and now on what Mike is also having - Tanzaparin. I'm not sure what the difference is but (this might interest you) it isn't as stingy as clexane and the needle is finer. Jonathan finds the injections much easier.

Jools - apparently is is much worse than post a snow ball fight. As for his weight - I wouldn't know, I'd unplugged the bl**dy thing before helping myself!!

If anyone wants to know what Jools's post was about, when in hospital I had been allowed to help myself to some spare wheelchairs on the ward to take Jonathan to the restaurant for a coffee and change of scenery. The best most comfortable looking wheelchairs that were easiest to steer didn't have foot rests. There was one ugly duckling left that did have foot rests but was a horrible uncomfortable looking plasticky thing with tiny wheels. It was plugged in(bit weird) but I unplugged it and Jonathan climbed on board. It was difficult enough to push without him in and with him in even harder but I did my best and got a little way up the corridor. Then a nurse appeared shouting "stop! stop!" and shrieking with laughter so much she could barely walk. I'd only been pushing him to the restaurant in the weighing machine. I felt such a fool. And as a friend later told me, I'd stripped the last Jenga block of Jonathan's dignity away. Fortunately he saw the funny side (2 days later)....

Cathy xx

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

Re: A bit of a worry....

Postby Slewis7313 » Sun Dec 22, 2013 1:12 am

And that is why we miss you Cathy! Will we see it on Youtube sometime?

Steve
X

Jwilson
Posts: 100
Joined: Sun Jun 09, 2013 9:52 am

Re: A bit of a worry....

Postby Jwilson » Sun Dec 22, 2013 3:25 am

The weighing machine is hilarious! Cathy has now been re named Catherine Wheels.....not by me! Someone much quicker off the mark. Hope J doing well at home
June

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

Re: A bit of a worry....

Postby marie souter » Sun Dec 22, 2013 12:34 pm

lol killed myself laughing at the weighing machine hahahaa .. still giggling now .. its the kind of thing I would do .. try and take my mom for a little wander in her commode