Trial at XX

[kwaitang]

My husband, Keith, has been selected to start clinical trials at xx hospital in xx. He was scheduled to start next Wednesday but we have since had a call to say that it has been delayed because the previous scan was not clear enough and thay needed to do naother one (his fifth). So now we wait yet again.

The treatment will run alongside chemotherapy. The drug is called VANDETARINE ( don't know how to spell it) and apparently only 50% of patients are given this drug and the other 50% are given a placebo.

The doctor says that they are not involved in the selection of who will recieve the drug and that they just monitor everything and report back to whoever.

Has anyone heard of this drug?

We can only hope that my husband is one of the lucky ones who get the "real" thing.

Arlene.

[J_T]

Never heard of it Arlene but fingers crossed scan is good and Keitb can get on the trial with the REAL thing!

Good luck

Julia

[karen17]

Hi Arlene,

I've heard of vandetanib if that's the same drug and think there's a trial going on at Sheffield using that and gemcitabine.

Its good that Keith has been selected and I agree you can only hope that he is given that and not placebo. Has Keith had chemotherapy before?

Karen xx

[kwaitang]

Hi. Oh yes I think it is VANDETANIB. No Keith has not had any treatment at all yet. We have known that he has terminal cancer since mid June and seem to have to keep going for scans (4 so far and another in the pipeline) and 2 lots of biopsies. The waiting in between each of these things is unbearable as he was only given 8 - 12 months life expectancy (I know this is not a hard and fast rule) and we seem to spend most of our time waiting for appointments.

[Cathy]

Hi Arlene

There is something on cancer research uk website and I've copied and pasted the link below if you havent already found this.

http://www.cancerresearchuk.org/cancer-help/trials/a-trial-comparing-gemcitabine-vandetanib-gemcitabine-alone-pancreatic-cancer-vip

Some people do do really well on gemcitabine alone our oncologist has told us but I imagine you just want treatment to start. Jonathan was diagnosed 12 Dec but treatment not started treatment til early Feb due to delay caused by Christmas and then the extra tests needed to join a trial (which he ended up not being able to join in the end) so I do empathise with your frustration.

Keep us updated with how Keith gets on

Cathy xx

[kwaitang]

Cathy. Thanks. I have printed off the details of the vIP trial and it is very helpful. The doctor probably said some of this but it is very hard to take everything in, so being able to read it now means I can absorb the details much better. So far Keith has passed all the tests that they have given him - it is just the scan that they say is not clear enough. I know with trials they have to be absolutely accurate with the measurements etc: but it doesn't stop the frustration.

I am sorry that things did not work out for Jonathan - I wish you both well for the future and hope that he will get some sort of treatment that may help.

Arlene. x

[PCUK Nurse Dianne]

Thanks Ladies for all the input about the ViP trial using Gemcitabine and Vanetanib. We alsohave this information on our web site, however is most likely very similar to the information post thus far.

http://www.pancreaticcancer.org.uk/information-and-support/clinical-trials/trials-for-inoperable-pancreatic-cancer/vip

Hope this is helpful.

Dianne

Support Team

[kwaitang]

Well, after 3 months of delays, scans and biopsies Keith started on the VIP trial last Thursday/ Friday. On the Thursday he had the first Chemotherapy and had a bit of bloat for a few hours afterwards but apart from that was quite well - lets hope that it is that good for all the treatments.

On Friday he had his first clinical trials dose of Vanetanib. 3 x 100g tablets that he has to take on a daily basis. He did not have any side effects at all after taking this, the only downside to not having any side effects is that we will not know if it is the real thing or a placebo.

Another plus is the fact that he has been given appointments right through to the end of next March - does this mean that they excpect him still to be here that long - we hope so.

Will update if anything new happens. Arlene.

[kwaitang]

Well Keith has had 3 treatments of and has been on the clinical trials medication for nearly 3 weeks now. He takes one vanetanib tablet a day (if it's the real one) After the first dose of chemo he had a bit of bloat for a few hours but apart from that nothing. The second dose, he was ok for a few days then developed a purple rash on his legs, bruising and seemed to lose his voice a little. He was admitted to Weston Park overnight on a drip and given cream for the rash. They said that his kidneys were not working fully hence the drip and plenty of fluids and it seems to have righted itself. He went for his 3rd dose of chemo and was given a reduced dose as his platelet count was down to 75 and they like it to be over 100. 2 days after this treatment he looked dreadful and shivered and couldn't seem to get warm at all. We just had a call today to say that the scan he had 3 weeks ago showed that he has a pulminary embolism. This may be a result of the cancer, I think he may have had it a while (if that is possible) as I remember a few months ago saying several times that he sounded out of breath. He is to have an injection on Thursday with something to disperse it. Next installment soon. Arlene.

[PCUK Nurse Jeni]

Hi Arlene,

Sorry to hear that Keith has had a few ups and downs while on his treatment.

The bruises could have been from the reduced platelet count. Sorry to hear that he was dehydrated - definitely needs to drink plenty when he is on his treatment especially, but just in general. These drugs are probably toxic to the kidneys when they are being excreted, so increasing the fluids will just help to flush them out in a more efficient manner. The injections for the clot in the lungs will be a daily injection, for a minimum of 3 months, maybe more.

Regarding the shivering episode - did you ring the hospital? If not, and this happens again, then you need to take his temperature and ring the oncology unit straight away - did you check his temperature when he was shivering? When a person shivers, especially when on chemo, it likely means that they have a high temperature. The shivering is the body's way to cool itself down, so it does not mean that you are cold - it means that you are very hot, and your body is doing all it can to cool itself. It is very important that you take his temperature when this happens - I am sure that this was explained to you at the hospital - and then call the chemo unit. It could be a sign of an infection, and they would need to know to treat accordingly.

Hope the next few cycles go ok.

Kind regards,

Jeni, Support Team.

[kwaitang]

Keith had his 4th treatment yesterday and the shivering started again. He says everything around him feels cold. Wraps up really snugly and the shivering stops till he moves again. He feels hot to the touch but have taken his temperature several times and it appears to be normal(just under 37) He had the full dose of chemo this time as his platlettes were normal after the blood test. No new bruising as yet but the purple rash he has had on his legs is still there but is not getting any worse and ay least does not itch, he still has some cream to put on that.

Was told he still needs to drink a lot as his kidneys slightly wrong.

He has been given lots of syringes to inject himself in the stomach and a district nurse is coming today to show him what to do. We were surprised that these injections go on for so long (up to a year they said) I think we were expecting a miracle, that he would have an injection to disperse the embolism and his breathing would instantly improve.LOL.

Arlene.

[Slewis7313]

Hi Arlene, apparently clots on the lung are treated for longer than elsewhere in the body. I had the same and am on Clexane indefinitely. I also had a purple rash in the early days of chemo (GemCap) which covered my upper thighs, stomach and bum! They stopped chemo for a week and gave me steroid cream which cleared it within about 3 weeks. They said they had never seen that type of rash before, but it is obviously not unique.

Good luck with the treatment and I hope the shivering sorts itself out soon.

Take care

Steve

[Cathy]

Hi Arlene

I was just about to reply to you but Steve pipped me to the post

Yes, a few of us on here have experience with these injections. Jonathan has JUST come off them after being on them since Feb. They're a little bit stingy sometimes unfortunately. I used to do them for him but Keith might be more than happy to do them himself.

Take care

Cathy xx

[kwaitang]

Hi Cathy. We are waiting for the district nurse to show Keith how to inject himself. If he doesn't like doing it I will do it when I come back from a trip I have to do. It won't bother me to do them. It is good that Jonathon has been able to come off of the injections. Does he feel better and less breathless now? How soon did he notice a difference? Were scans or xrays done to monitor the embolism? These were all questions that I should have asked at the hospital but I only think of things afterwards.

Take care. Arlene.x

[Cathy]

Hi Arlene

His clot was actually on his arm which is probably why he hasn't had to have the injections for as long.

However, I'd say the injections (he had clexane) worked pretty quick. The pain and swelling were gone within a week I'd say. He didn't have scans or anything like that at all - was just told to carry on with the injections.

The injections themselves can cause a little bit of bruising on the tummy so best try chose a different bit of tummy each time. Helps if Keith has a lot of flesh on there to chose from I also found that inserting the needle at a little bit of an angle pointing down stung less but it was all a little bit hit and miss. You and Keith will soon get into the routine of doing them I'm sure.

Good luck!!

Cathy xx

[kwaitang]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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