Bee Posted July 22, 2013 Share Posted July 22, 2013 Hi everyone, Not posted much recently but have been reading all of your posts as always. Sounds like you are all at crossroads with oncology appointments and changes in treatment planned, also sounds like some lovely holidays have been had ,or at least days out Julia!!We have now booked and are counting down to a family holiday, which gives us all something to look forward to. , Good luck all of you with appointments and look forward to hearing your next updates!Bee xx Link to comment Share on other sites More sharing options...
J_T Posted July 24, 2013 Author Share Posted July 24, 2013 Damn! Another negative! We had hoped Ray would be able to have gemcitabine/abraxane. Although Abraxane is not licensed for second line pc yet (its licensed for breast cancer) we were going to pay for that bit ourselves. We knew it wasn't going to be straight forward as you need permissions and our onc told us today we didn't get them (insert your own expletive!)Our nearest private facility is Preston. Onc told us we could get it privately and then get a nurse to come from there to our house on the afternoon he got the Gemcitabine to infuse the Abraxane but goodness knows what that would cost! (we'll probably find out).He did tell us there is a big push on to get Abraxane on the Cancer Drug Fund watchamacallit for pc, so we'll just have to hope it does - and soon!Gemcitabine tomorrow. Onwards and upwards!Julia Link to comment Share on other sites More sharing options...
Cathy Posted July 24, 2013 Share Posted July 24, 2013 Oh Julia, how absolutely f*%!*g frustrating!!!Who is doing the push? Can we push??Is there another connotation for getting the drug from Preston that might be possible and cheaper - to go there for example? I do think it worthwhile getting a cost - I'm sure you will as you have alreaady said you probably will find out.Don't give up hope!!! I'm sure you won't as you are a very positive person. And gemcitabine alone can have very good effects we've been told (both by Diane on this site and our oncologist). The fact that Ray seems so well as well is only a good thing.Keep on keeping on!!!! Cathy xx Link to comment Share on other sites More sharing options...
J_T Posted July 30, 2013 Author Share Posted July 30, 2013 Hi folks!Well what a weekend we've had!Ray had his first gemcitabine last Thursday, all hunky dory except he was a little tired. On Friday night we went to bed at 10.30 and he felt shivery and although it was very warm in the bedroom he had a summer duvet doubled up and over him. At 1.00 am he woke up boiling hot and feeling 'off'. I took his temperature and it was 39.8! We ended up in A&E at Lancaster on IV anti-biotics and fluids. He was admitted to the Acute Medical Unit where he continued to receive IV abs and fluids. We were awake all night and I got home 7.30 am. I got back to hospital at noon-ish and he had that awful exhausted feeling which I think was result of the gemcitabine - he slept most of the day.On Sunday morning he phoned to tell me he was being moved to the Coronary Care Unit! That morning he had felt fine and had breakfast but then his heart started racing, the sister said it had been at 200 at one point! When I got to CCU he didn't look too bad and they had given him a drug to get his heart back to the right rhythm, if that didn't work they were going to have to shock it, but it did so that was a blessing. He was monitored in CCU still receiving IV abs/fluids and once his heart had calmed down he felt fine. Blood cultures gave no clues as the source. He stayed on CCU til this morning when he was discharged feeling back to normal. His onc saw him and said it was nothing to do with chemotherapy, don't think they really knew the cause, but he was okay to go ahead and have cycle 2 on Thursday.I heard the word 'sepsis' mentioned a few times, I looked it up ....!!!Anyway, he seems fine now, got back home, had a brew and promptly fell asleep. Thank goodness that's all over! Phew!Onwards and upwards Link to comment Share on other sites More sharing options...
Cathy Posted July 30, 2013 Share Posted July 30, 2013 Oh blimey, poor old Ray! I was wondering how he'd got on with his first session and looking out for your post.Glad he is home and feeling better. The first time Jonathan had to go in (not the time I chucked him out of the wheelchair) they were concerned about his racing heart and thought it might have been down to an infection. He was fine in the end after a bit of rehydration - they didn't find an infection.Onwards and upwards as you said.Go put your feet up yourself!!Take care bothCathy xx Link to comment Share on other sites More sharing options...
KATB Posted July 30, 2013 Share Posted July 30, 2013 I do still laugh at the wheelchair incident Cathy!It was a scary weekend where I wanted to rush up there but was up to my eyes in work Still, all was well in the end and I'm looking forward to spending a lovely few days with mum and dad from Thursday onwards while my husband takes the boys to see his mother (can you imagine how gutted I am to miss that? ).Onwards and upwards daddy!Kx Link to comment Share on other sites More sharing options...
Cathy Posted July 30, 2013 Share Posted July 30, 2013 Yes... Needless to say Jonathan is still dining out on that wheelchair incident! Still.. on the bright side stopped him worrying about feeling fatigued for a few heart stopping seconds I guess....Have a lovely few days Kate (sans hubby and kids) with Mum and Dad xx Link to comment Share on other sites More sharing options...
karen17 Posted July 30, 2013 Share Posted July 30, 2013 Sounds like you had a dreadful weekend Julia and Kate. This disease is like being on a damn rollercoaster! When bob had his admissions 2 hospital with pyre is they never got 2 the bottom of that either despite blood cultures. Maybe just one of those lovely things with chemo! Hope all is ok nowCathy - none of us will ever tire of or let u forget the wheelchair saga Link to comment Share on other sites More sharing options...
karen17 Posted July 30, 2013 Share Posted July 30, 2013 Whoops I meant pyrexia. Tryin 2 get used 2 new phone and accept I need specs 2 read! Link to comment Share on other sites More sharing options...
Bee Posted July 30, 2013 Share Posted July 30, 2013 What a horrid weekend you have had! Hope,your week gets better and that you both get some sleep tonight.One day at a time , little steps climb big mountains xxAs for the wheelchair episode, what can I say Cathy, I have no idea what you even look like but I have visualised the whole incident several times and it makes me laugh out loud!! Link to comment Share on other sites More sharing options...
Cathy Posted July 31, 2013 Share Posted July 31, 2013 Currently in talks with "Total Wipeout"Watch this space Link to comment Share on other sites More sharing options...
J_T Posted August 13, 2013 Author Share Posted August 13, 2013 Just a quick update as I'm on my Kindle, not the best tool!We, or rather Ray, is having a tough time. In and out of hospital, stent problems, or not, urine is now clear but waiting for appt for new stent.Latest, yesterday, he now has a DVT or suspected at least. He is having Clexane injections, scan on Thursday. No chemotherapy. He's very down as you might imagine.Still thinking of you all and hoping things are going positively for you all.Julia x Link to comment Share on other sites More sharing options...
Cathy Posted August 13, 2013 Share Posted August 13, 2013 Hi JuliaI've been looking out for your post as we hadn't heard from you for a while and I was worrying. I was going to DM KATB if you hadn't posted.I am so sorry to hear poor old Ray having a tough time. I'm not surprised he is down and you must feel wiped out as well. Let's hope that new stent does the trick and his treatment can start again.Jonathan has been on daily Clexane for a while now after a clot on his arm. He has the shot into his tummy each evening - it sorted out the clot fairly quickly. It's a bit of a pain having to do them but normally one or the other of us remembers. I do the injection coz he's a bit squeamish (bless). If I can give you any more information about them that might help I will do - just ask.Thinking of you allCathy xxxx Link to comment Share on other sites More sharing options...
Bee Posted August 14, 2013 Share Posted August 14, 2013 Hi Julia,Sorry to hear you are having a tough time at the moment.Fingers crossed the cleaner does the trick and the new stent, when it goes in, is more successful than the last.I am not surprised he is feeling down and you must also be feeling the strain,Take care and keep your chin up.Bee xxx Link to comment Share on other sites More sharing options...
Slewis7313 Posted August 14, 2013 Share Posted August 14, 2013 Hi Julia, I can only add to other's comments that I am sorry that Ray is having such a difficult time at the moment. When I was likewise diagnosed with a DVT in March I was actually feeling relatively well, but it still came as a big slap in the face on top of everything else. I ended up spending most of the day in Hospital until they decided what to do. I have been on Clexane since and it has actually been much less of an issue to administer than I initially envisaged. As the Nurse pointed out at the time, I have enough flab around the belly area to make administering easier!Hope things pick up for you both soon.Take careSteveXx Link to comment Share on other sites More sharing options...
KATB Posted August 14, 2013 Share Posted August 14, 2013 Thanks everyone for your messages and support. It means such a lot. It's such a rollercoaster we are all on and it's a real comfort to know people are thinking of each other through it all.Kx Link to comment Share on other sites More sharing options...
J_T Posted August 14, 2013 Author Share Posted August 14, 2013 Yes, thank you. I think it made Ray feel a bit better when I told him a few on the forum were having Clexane injections.His leg is twice the size it should be, from toe to groin, and is very tight. Its hard to get about on, in fact he's not getting about! Its a tiny bit better today, and tonight I think I've got to have a go at doing his injection! eek! Scan tomorrow.We tried to get bloods today because we don't believe he now needs a stent. He doesn't seem to have an infection now and his urine is clear. The DN couldn't get any blood from his PICC, or flush it! Neither could she get any from the vein in his other arm and they did struggle at the hospital the other night too. We are going to attend the oncology unit tomorrow to see if they can get blood and flush his line. We'd like to get back on his treatment and as always we're the ones trying to move things along!Jx Link to comment Share on other sites More sharing options...
Slewis7313 Posted August 14, 2013 Share Posted August 14, 2013 Julia, I am, sure youv'e already been briefed but I find the softer (flabbyer) the area of skin is the easier the injection. You can also go in at an angle so that it doesn't go quite so deep. That said, the injection going in does not normally hurt at all, just the medication nips for a short while sometimes.That was (believe it or not) meant to reassure you....... If I can do it, I am sure you can!SteveXx Link to comment Share on other sites More sharing options...
Cathy Posted August 14, 2013 Share Posted August 14, 2013 Exactly the same for us! It helps to do it in a different bit of skin as you can bruise - fortunately Jonathan has a lot of tummy to choose from!Julia - once you've done it once you will become a pro in no time. As I said, the drag for us is remembering to do it - it takes seconds actually doing it. It can be a bit stingy but even that varies.Initially when he started on clexane there was no difference then suddenly he was fine - not even a week after his first injection.Good luck. Cathy xx Link to comment Share on other sites More sharing options...
J_T Posted August 14, 2013 Author Share Posted August 14, 2013 Thanks guys!Its Ray I feel sorry for!x Link to comment Share on other sites More sharing options...
Bee Posted August 14, 2013 Share Posted August 14, 2013 Hi Julia,I do hope your sense of humour is intact and I need to apologise. I posted earlier before I whipped off to work, clearly I didn't read the post. I use an iPad and it has predictive text thingy on it, hence clexane changes to cleaner!! I came home from work and read my post , "fingers crossed the cleaner does the trick"! What can I say, I do hope my stupidity raised a smile !!Bee xx Link to comment Share on other sites More sharing options...
J_T Posted August 15, 2013 Author Share Posted August 15, 2013 Hi Bee, I didn't see that post but in any case as I AM the cleaner too I guess you weren't far off the mark lol!'Ouch' he saidwhat do you mean, says I, it didn't hurt me one bit Ray has clots in BOTH legs, never does things by half our Ray! I am now a veteran of two injections, nowt to it! Link to comment Share on other sites More sharing options...
J_T Posted August 24, 2013 Author Share Posted August 24, 2013 So, the good news, Ray is back on gemcitabine. Had his second infusion on Thursday after a 4 week hiatus!The bad news is he is still shattered and quite low from the dvt situation and couldn't wait to get home from his session. He went straight to bed and has been there ever since, with blinds down. He is sleeping a lot, has no interest in getting up and watching tv. His appetite is very poor, though he does try. He's had two high temperatures over the last couple of days but as he is resistant to hospitals(!) we've managed to get them down to normal ourselves quite quickly, thank goodness.I feel in some ways I'm adding to his woes by keep telling him he needs fluids! I'm countering that with a foot massage!All the best to everyone.Julia x Link to comment Share on other sites More sharing options...
Cathy Posted August 24, 2013 Share Posted August 24, 2013 Hi JuliaWell, great news Ray is well enough so his treatment can resume. He's had a bit of a tough time of it recently so maybe it isn't surprising he feels so wiped out and hopefully he just needs a bit of time before he gets his mojo back Foot massages are LOVELY so I'm sure he'll be enjoying those. I mentioned on Sarah's thread that Jonathan has regular massages and reflexology and gets a lot out of both.How are you getting on with the clexane sorting out his legs?Here's hoping that it will be onwards and upwards with Ray from now on in!!! Keep on keeping on Julia!Hope the weather is cheerier up where you are. It is tipping it down even heavier in London now Xxx Link to comment Share on other sites More sharing options...
karen17 Posted August 24, 2013 Share Posted August 24, 2013 Keep on with those foot massages Julia and hopefully ray will get that mojo back. Link to comment Share on other sites More sharing options...
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