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kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: Trial at Weston Park

Postby kwaitang » Sun Oct 06, 2013 5:43 pm

Well we've had a few ups and downs in the last couple of weeks. The district nurse didn't turn up to show him how to inject for the embolism so he just did it himself and has been doing it every day since. He has had a problem with his kidney and liver functions and his Bilirubin count went back up to 75 (from 25). He was admitted to xx and taken off of the VANDETANIB temporarily and everything seems to be righting itself. He is now home and has had no bad effects from just having the chemotherapy alone. The hospital is hoping to start him back on the vandetanib again on Thursday, on a reduced dose, if his kidneys, liver and bloods are all ok. One good thing about all of the side effects is that it seems that he must be getting the "real" drug and not a placebo. More news when we have something to report. Arlene.

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

Re: Trial at Weston Park

Postby cestrian » Mon Oct 07, 2013 9:47 am

Hi Arlene

Just given myself my daily jab - it's no problem if you're not too bothered by needles and luckily I've had no real bruising problems and only occasionally make myself wince as the needle goes in.

I'm on a clinical trial but using a MEK Inhibitor alongside Gemcetabine and mine is also a blind 50/50 trial so no idea if I'm getting the real drug or placebo, particularly as I've had no side effects. I do think a major plus of being on the trial is the level of monitoring and care that it involves. Possibly a bit more time consuming but I feel scanned and tested to within an inch of my life but with this comes a great sense of reassurance that anything untoward will be picked up without delay. My team are all superb and I thank the Lord for them every day.

It must be very hard for you with so little support from family or friends - again my dear wife has plenty of support and luckily I'm able to function pretty normally around the house so need less care. Counting my blessings as with this sneaky disease you never know the next twist in the tail so need to take one day at a time.

Use all the resources you are able to obtain, McMillans, District Nurse, Trials Team and your GP will all help you if asked. You do need some down time of your own just to keep going so never, ever feel guilty about taking time out as it will help no one if you crack up. We've all agreed on a "positive reality" approach where hugging and laughter are the general order of the day but sometimes tears will break through so just let them - they are nature's outlet.

Love and Peace

Mike

PCUK Nurse Jeni
Posts: 1082
Joined: Mon Jun 14, 2010 1:30 pm

Re: Trial at Weston Park

Postby PCUK Nurse Jeni » Mon Oct 07, 2013 11:51 am

Thank you Mike for being such a great support to all on here, and for your positive and touching posts.

You are doing well, thankfully as you say, and it is great that you are investing some of this into others welfare. So, thanks from us!

Jeni,

Support Team.

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: Trial at Weston Park

Postby kwaitang » Tue Oct 08, 2013 11:30 pm

Thank you Mike for the reply. I do hope that you are getting the "real thing". Keith has done well with the injections, very little bruising. You are right about the checking up while on the trial. The only thing I did find to be a bit of a concern was that they told Keith he had the pulminary embolism 5 weeks after the scan that he'd had. Having said that I think it had been there for quite a while as I remember him being breathless back at the begining of June. We haven't as yet asked for any help from any organizations as we are very private people and have always managed. I suppose a time will come when we do have to ask for help. My sisters have offered help but I don't want to put on anyone until absolutely neccessary because I don't know haow long it will go on for. My neighbours haelped when Keith had to go into hospital while I was away and took him there and collected him on discharge. They also looked after the house and dogs. They keep saying "don't cut the grass - we'll do it" but I don't want them to get fed up before I really need them. Gosh I do seem to ramble on a bit but I have so many things in my head and find it easier to write them instead of talking about it. Keith has been so well the last 2 weeks it is like he is not ill at all. Life seems normal at the moment and it's so easy to put it out of my head (denial I suppose). I wish you well. Regards. Arlene.

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: Trial at Weston Park

Postby kwaitang » Wed Oct 16, 2013 3:48 pm

Keith has been off of the Vandeanib for a couple of weeks now to allow his kidneys, liver and bloods to recover, The hospital said he could be off of them for 3 weeks but his next appointment with the doctor will mean a 4 week gap. The hospital rang the manufacturers and have permission to start him again after the 4 weeks. Just hope everything is ok at that time as if he can't re-start treatment on that date he will be off of the trial.
The only other hiccup is that he went through 2 nights where, if he laid down his lungs seemed to fill up with fluid and he couldn't get enough air in to breathe. When he sat up it seemed to rectify himself so slept for 2 nights sat up. He went for a check up and the problem seemed to be gone and he has been ok ever since. Maybe the injections he has to give himself for the pulminary embolism made this happen.
Anyway he has a week off from the chemo now after having it for 7 weeks and seems to be coping very well with this ion its own. Arlene.

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: Trial at Weston Park

Postby kwaitang » Mon Nov 04, 2013 12:33 am

Well Keith has been on a reduced dose (2 x 100mg) of the trial drug for 11 days and no ill effects yet so lets hope that it continues. The last time he had it the feeling cold and uncontrolable shaking started within a day of having it and lasted a couple of days. He has also been eating a lot better the last few weeks and has started to put a bit of weight back on. He didn't have much appetite for the last few months so nice to see him enjoying the food again. One thing that has changed is his food likes. Things he liked before getting ill he doesn't like now. The only thing that showed up in a blood test last week was that his red blood count was down (about 105) the hospital said if it goes much below 100 that he may need a blood transfusion. I don't know if this is normal on Chemotherapy or if it is a side effect of the trial drugs. He said the doctor told him that he may get very drowsy and become disoriented. Trouble is that I didn't get to the hospital with him and he didn't tell me this till 4 DAYS after he had been told. I don't know why, he just seemed to mention it as if it wasn't important. Arlene.

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

Re: Trial at Weston Park

Postby cestrian » Mon Nov 04, 2013 8:59 am

Good to hear Keith is still on the trial and putting back a bit of the weight he'd lost - you and his trials team must be really pleased. These teams really know what they are doing and usually have the answer to any problem that arises. I'm mercifully free of Side effects and now on cycle 3 of my trial combining Gemcitabine with a MEK inhibitor but had a bit of a "bathroom problem" that they quickly sorted with Immodium generic equivalent.

Hope he's still OK with daily jabs - mine are indefinite and incidentally my very small clot was spotted just two days after the scan and I started tinzaparin immediately thanks to a very vigilant lady in "Imaging" who'd brought it to my prof' s attention before he even saw the CT scan himself!!

Long may our progress continue as we want to show this cursed illness that it can't always have things all its own way.

Love and Peace

Mike

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: Trial at Weston Park

Postby kwaitang » Fri Nov 08, 2013 9:57 pm

Hi Mike. Glad to hear that your treatment is going ok and you seem to be managing quite well on it. Like you, it was someone in imaging that noticed the embolism but we didn't hear about it for about 3 weeks. But at least he is having the correct medication now. A couple of ups and downs the last few days - am posting below.
I wish you all the best and thank you for your positive outlook which seems to come through in your comments.
Arlene. x

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: Trial at Weston Park

Postby kwaitang » Fri Nov 08, 2013 10:11 pm

Well we seem to have had a couple of ups and downs this week. Keith was doing so well and the he started having terrible pains in his chest and couldn't breathe if he had any fresh air. He went to the garden for about 20 yards and I thought he would collapse. Back in the house within a few minutes of getting warm air again and he started to recover. Went to Weston Park. Bloods were taken - red blood count was still slightly down but had not changed significantly in the last week. ECG done - no problems. Chest xray done - nothing to see.
We saw a doctor that had not seen Keith before and I was slightly worried when he asked when he had last had an athsnma attack and how long ago was his heart attack. Keith has had neither. The doctor also noticed that Keiths legs were swollen. He said he could find not reason why and suggested that we go see our GP. After spending 6 hours at the hospital we felt guilty like we had wasted their time. We have a card that says if ill to ring the hospital first so this is what we did.
Anyway by the next day Keiths breathing was worse and he had a chesty cough, sounding like a smoker, and he was feeling worse. Rang the GP's and explained the problem and they said to come straight down. The GP suggested that he had a virus that was causing his chest muscles to contract and prescribed anti biotics.
By today he is feeling so much better and the swelling in his legs is also reducing.
Lets hope this continues.
Arlene.

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

Re: Trial at Weston Park

Postby J_T » Fri Nov 08, 2013 11:02 pm

Goodness Arlene you've had a tough couple of days. Have they tested for DVTs? Not uncommon with PC. Ray had terrible swelling in his legs and turns out he had bi lateral dvt but they can be in chest too which would make breathing difficult. I'm pretty sure they would have checked that out though.

Hope Keith is feeling better x

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: Trial at Weston Park

Postby kwaitang » Sun Nov 10, 2013 11:51 pm

Hi J t. Keith has got a pulminary embolism and is giving himself daily injections for that. The doctor didn't test for anything else after he noticed Keith's legs were swollen or suggest anything as to what may be causing it.
After 4 days on the anti biotics he has no more pain in his chest but is still a bit breathless. One good thing that has happened is that for months he has got up to go to the toilet 2 - 3 times a night and for the last 2 nights he hasn't had to get up to urinate at all. Could the anti biotics have cured something else?? :lol:

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: Trial at Weston Park

Postby kwaitang » Thu Nov 21, 2013 10:18 pm

Well Keiths pain in his chest and his breathing got worse. Went back to our GP and saw a different one. He said that it sounded like the classic symptoms of Angina. Has contacted a cardiologist and we are waiting for an appointment. Meanwhile he put Keith on beta blockers. Within 2 days the change was unbelievable. No more chest pain, breathing almost back to normal. Amazing.

Today Keith had his 3 month scan. The doctor said that his cancer was "stable" and had not increased but that the lymph node cells seemed very slightly reduced but so slight that it could not be measured. I was disappointed at first - I wanted to hear that the cancer was shrinking.
Slowly it started to dawn on me - it hadn't got any worse.
In 3 months it hadn't increased so that would mean 3 more months to live.
So that was good news.
Arlene.

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

Re: Trial at Weston Park

Postby Cathy » Thu Nov 21, 2013 10:27 pm

Hi Arlene

That is FANTASTIC news. PC is difficult to treat so stabilised is a positive result. I know what you mean about wanting things to reduce but just staying the same is to be celebrated! So I hope you are! :)

Jonathan started beta blockers himself after he got admitted to a&e with a suspected infection early on They found an irregular heart beat and gave him beta blockers and he found them really helpful.

So, lots of positives I think?

Very pleased for you. :)

Lots of love

Cathy xx

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

Re: Trial at Weston Park

Postby J_T » Thu Nov 21, 2013 11:37 pm

Hi Arlene as Cathy says a GOOD result, AND a little shrinkage to nodes AND beta blockers doing a good job!

I am really pleased for you both, these are all positive things.

Keep on keeping on!

Julia x

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

Re: Trial at Weston Park

Postby cestrian » Fri Nov 22, 2013 2:32 am

Hi Arlene

Insomnia meets Test cricket from Oz so here I am at this unearthly hour.

Just to wish you and Keith all the good news you deserve and to hope that he continues to be stabilised and other problems helped by the Beta blockers.

You've probably seen on other threads that my time on the trial has been ended by a small rogue lesion on my lung that had grown at a faster rate than the trial protocol allows. Some regrets but the glass is nearly full in my eyes as I feel pretty well, continue to put weight back on and the main tumour and other lesions all still stable. Meeting up with my GP as soon as I get home from Lanzarote to discuss strategy going forward but now trial tablets jettisoned I'm down to just the one Omeprazole each day and my Creons plus my daily injection of Tinzaparin so pretty happy to be fairly drugs free although of course my Gemcitabine chemo continues on a weekly basis.

Today I had a call from the trial lead nurse who wanted me to endure another day at the Eye Hospital for tests but as I'm no longer on the trial tablets and only went through this on Monday I politely declined although I told her I was happy to have the mugga scan on my heart they also wanted as that is always so well organised.

We'll keep this pestilence at bay for as long as we can! I've got a trip to the Dordogne booked for early April alongside loads of other things I'm looking forward to. Tempting fate I know but it' got to be done if you want to stay sane and positive!!

Love and Peace

Mike