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Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Clair and Blue (Part 2)

Postby Nardobd » Mon Apr 12, 2010 6:09 pm

Hi Clair

Yes, everything's ok here too - we both have spring colds but other than that no complaints. Ted has his appointment with the consultant on the 5th May so I guess we'll know more about what's going on then. Good luck for the scan - let us know what happens and in the meantime just enjoy every moment.

Nicki x

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Clair and Blue (Part 2)

Postby clair2305 » Wed May 19, 2010 6:53 pm

Dear All

just to let you know Blue had his CT scan today, hopefully we'll get the results next Tuesday at clinic appointment.

Now for the stupid stuff we have done....

We DROVE to SOUTHERN SPAIN, yes I said drove and yes to Southern Spain. Blue was wanting a holiday before the CT scan, flights were expensive and haphazard because of the ash. Also we don't have a credit card which you need for car hire (and we needed a car in Ayamonte), so silly me said let's drive. Google maps said it was only 20 hours and Blue jumped at it. We hadn't taken into consideration the toll roads, worked out £220 there and back and after driving through France our eyes, bodies, the lashing rain and dark winding roads said we should stop and rest, so we slept in the car.....something we shouldn't have done even if we were fit nad healthy, I mean we're not teenagers!! Then to top it off the car broke down once we arrived, had to pay 312 euros for a new starter motor and to say the RAC were unhelpful, inept and unprofessional is an understatement (they will be getting a complaint). So we wont be doing that again and have told friends and family that if we even mention it to punch us straight in the face :lol:

It was my suggestion and I feel really guilty about it, but Blue says that he was agging me cos he wanted to get away for a while.

Some people say they need a holiday to get over their holiday.....we really do!

Also, whilst we were away Blue had some back pain and some constipation. I increased the laxatives but they had minimal effect, although he did go on Sunday when we arrived back in the UK. I don't think sleeping in the car helped and I feel that this is my fault, despite him saying the opposite.

However, he still has back pain and constipation (although he says he doesn't feel like he needs to go). Spoke to the macmillan nurse today, who said to increase his sodium docusate. She is also going to prescribe movicol, but he has had that before, before he was diagnosed and it didn't really have any effect and gave him stomach ache. Hopefully he will go today or in the morning. He also has some enemas he can try, but he doesn't really want to, just like he doesn't want to have oramorph top up and I can't force him.

I've bought him some licquorice hopefully that will help.

I just pray the back pain (which only started whilst we were away) and the constipation subside and are only a side effect of our own stupidity and change of diet eg having to drink bottled water, etc.

Any thoughts?

And how's everybody else? Juliana, Nicki, Ellie? And how's Vicky, I was really shocked and upset to hear her news.

Love to you all

Clair

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Clair and Blue (Part 2)

Postby Juliana » Wed May 19, 2010 10:13 pm

Hi Clair,
Sorry your holiday was not what you expected, I hope that you and Blue can laugh about it now - and that you did manage to enjoy yourselves regardless of sleeping in the car (my family used to drive to Southern Italy......I loved it, but was young and didn't have to drive!).

I am like Blue - constipated but doesn't feel or get the urge to go. I've tried all types of laxatives and most of them cause colic and gripe - except Movicol, which I recommend. However I do find the softer the stool - the less I want to go to the loo. To get around this I use glycerin suppositories.....they work a treat. Within 10/15mins of inserting one, I get the sensation of wanting to go. The enemaes (which I have also tried) are similar, a little trickier to use and in my opinion don't work as well.

I have an MRI this Friday, but currently the general consensus is to make me 'as comfortable as possible' with no further investigation into what is causing all this pain and weight loss. :evil: I can understand why, especially as my blood results were crap - first time in 2yrs to have abnormal liver ft's and my ca19-9 is also in the abnormal range of the scale.

On the upside, I too am going to the South of Spain, but by plane....ash or no ash! We are staying in the Mar Menor Golf Resort, in a little detached villa with it's own pool. Can't wait.

Speak soon -
Juliana x

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Clair and Blue (Part 2)

Postby Nardobd » Thu May 20, 2010 7:17 pm

Hi Clair and thanks for the update.

Actually, I don't think a mapcap adventure does anyone harm once in a while - Blue probably thoroughly enjoyed himself and it would certainly have given him something new to think about!

Let's hope that when we get the news it's good for both of us.

Juliana - I hope you have a lovely break. You deserve it.

Take care

Nicki xx

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Clair and Blue (Part 2)

Postby clair2305 » Mon May 24, 2010 3:35 pm

Dear All

just an update. Blue had his CT scan Wednesday and we have got hospital tomorrow, so will hopefully get the results then.

Blue felt sick when he had his CT scan, he has never felt this way before, normally he just has that warm feeling.

Anyway the Mac Nurse prescirbed movicol, which he didn't want to take so on Thursday he did two Micralax enemas with no effect. So on Friday morning I called the Mac Nurse who arranged for our GP to visit. He examined him and said that the enemas didn't work because the blockage was further up. He advised as Blue had already had a CT scan that anything would be shown on there and no to worry too much, as he didn't think it was serious, but just to have a lowered pain threshold over the weekend and if in pain, go straight to hospital (i knew that wouldn't happen). And that we should tell them tomorrow.

He also agreed with the mac nurse that whilst Blue is not having chemo he can have his paracetamol as well as his MST. I asked this because Blue doesn't like taking Oramorph and we were only told to stop the paracetamol when he started chemo because of the masking of temperature.

Anyway, maybe it was the examination but Blue did go to the loo on Friday (a little), Saturday (a lot) and twice on Sunday (a lot and later a bit loose) - it's amazing, even Blue says so, that bowel movements are a topic of discussion with PC :oops: ....everytime he so much as walked passed the bathroom I gave him an expectant look :lol:

However, he still has back pain and to be honest I don't think this weather albeit lovely is helping. With PC he already sweats a lot and then with the heat couple with the fact that neither of us can sleep much at night because it's so hot.

So fingers crossed for tomorrow.

Oh and I did a complaint letter to our previous surgery....was 3 weeks ago now and no response, although they are trying every delaying tactic like offering us a meeting (I told them it was not appropriate given the circumstances), needing a signed letter from Blue to give written consent. I'll give them till the end of this week then chase them.

Had a lovely weekend, my birthday. Blue got me a lovely card and is trying to buy me a laptop, but the joys of bidding wars on Ebay are driving me mad :x

So over to everyone else....

Ellie - how are you and Brian? I hope the scan goes well today. Blue also had anti-depressants for the side effect associated with the MST, he was having severe twitching mainyl when he was about to go to sleep and they do help. He is also on 120mg MST twice daily and paracetamol and oramorph if needed. As Blue also has mets in the liver, when he had some pains like you are described, especially stomach, the hospital said he should take his steroids for the week (Dexamethasone), they said that the liver is in a sack that stretches and sometimes this causes pain.

Would Brian not consider any chemo again? Maybe as he's had 6 months off he may feel differently, what about just the capcitabine tablets? Or Abraxane (which doesn't appear to be an NHS option). Maybe look at trials, for second line therapy and ask some questions when you go backfor the MRI results. Take care xx

Nicki - I hope you and Ted are well and I await an update when you get the results, keeping my fingers crossed for you xx

Juliana - I hope your MRI went well on Friday. Sorry, I read all your posts but cannot remember why you are having MRIs instead of CT scans? Especially since they can't see anything on the MRI. I'm sorry I hope I don't offend you, it's just you may have to remind me again. And sorry, why can't they offer you some other treatment? I'm sorry for my bluntness, but PC makes me so blunt at times.

Take care and I'm sure I've said this before but thanks for your support on this forum gals.

Clair

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Clair and Blue (Part 2)

Postby Ellie » Mon May 24, 2010 10:34 pm

Hi Clair

Just to wish you luck for tomorrow with the scan results. Hope the results are encouraging.

A belated Happy Birthday to you also!

Strange, isn't it. Blue felt sick when he had his scan, Juliana had a panic attack and Brian didn't have a pleasant experience, either. The Pregabalin (anti-depressants) he takes for the nerve pains give him really awful, horror movie type dreams if he falls asleep during the day. He fights all the time to stay awake because these dreams and the things he sees and hears are really upsetting and weird, but he drifted off while in the CT scanner and had these nightmares. He's been very subdued since the got home, so not a good experience of anyone recently. He has to take sleeping tablets every night to get to sleep and makes himself stay awake as long as possible until they kick in, so he doesn't get these horrible experiences.

Juliana - why did you have the panic attack? Is it something you want to talk about or not? I know Brian said he felt very hot and wanted to get out while they were doing the top half of his body. I truly hope everyone has some reasonably good news when they get their results anyway.

Thinking of you all.

Love
Ellie
x

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Clair and Blue (Part 2)

Postby clair2305 » Tue May 25, 2010 9:47 am

hi Ellie

Thanks for your reply....did you see my other post under research about cyrosurgery?

It is strange the feelings everyone is having at CT scans, especially since you have them every 3 months regardless of whether you are having treatment or not, but i reckon Blue's constipation didn't help.

I'm sorry Brian is not taking to the anti depressants, maybe the doctor could prescribe an alternative, seems a shame to have the nerve damage side effects controlled to then get another one. I don't know what nerve damage side effects Brian had, but Blue's was severe twitching especially of his arms, more like a flailing of arms when he was dropping off to sleep, he takes 10mg of amitriptylline at nightime, he's been told cant have sleeping tablets because of high dose of mst. I know some medicines cause nightmares and Blue did have them when he was prescribed tramadol. We're all different and i think it may be worthwhile seeing if Brian can be described something else, nightmares r awful n you always remember them.

Has Brian been offered a nerve block? It's 50:50 if it works, it didn't for Blue but our mac nurse said when they do, they're great.

Take care

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Clair and Blue (Part 2)

Postby Ellie » Tue May 25, 2010 4:34 pm

Hi Clair

Thanks for your reply. I've just posted under a new thread with the bad news that Brian's pain has been so bad because the cancer has now spread to his spine. We were really expecting him to be offered a nerve block - that's what the next step would have been for the pain, if this hadn't turned up. Scanning must vary, because Brian hasn't had one since last year - probaby Nov/Dec time. Will leave you to read my other post.

I will go and read your post about cryosurgery, but I wouldn't think the docs will consider any treatment just for the liver now, in the circumstances.

Take care

Ellie
x

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Clair and Blue (Part 2)

Postby Nardobd » Thu May 27, 2010 7:38 pm

Hi Clair

Any news on the scan? We're still waiting for an appointment with the consultant to get our results.

Hope everything's ok

Nicki

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: Clair and Blue (Part 2)

Postby Juliana » Fri May 28, 2010 12:34 am

Hi all,
Haven't read all the other posts yet, so sorry if I miss out on some info etc....especially with regards Brian, sounds like he's having a rough time of it :( so sorry.

Clair - I decided to have MRI because it's less harmful than CT (x-ray/radiation) I was trying to avoid anything that would stimulate/encourage cancer cells and have read MRI is the least intrusive and safest of all scans. The MRI does show a lot of info, it's just with the stomach/intestine in particular I think both CT and MRI would fail to show what is going on (barium x-ray failed).

I had my MRI results, and it's bad news. The tumors in my lungs have increased in size, one in particular - in my left lung has grown the quickest and is close to the spine. They did think it was the cause of the back pain, but upon detailed examination of the scan there is no contact/pressure from this lesion, so they are stumped again. The scan didn't show anything untowards in the stomach/intestine, but they are more or less positive it is there and the cause of my pain and weight loss (I look like a walking corpse atm).
The 'good' news was that the tissue around the SMA has not changed size, so it is probably scar tissue. And my liver looks clear.

My specialist nurse suggested chemo, and maybe stick to capecitabine instead of gemcitabine as I just can't stomach the smell (of the chemo unit) and my tiny veins just can't take any more prodding and poking. I also asked her to discuss Reolysin with my oncologist, she had heard of it - a couple of years ago apparently another patient (not pc) had enquired about it.
I also contacted Dr. Ross Taylor with regards the CV247 - but she was away, so talked with her secretary a bit who has taken some info to forward on.

I am away next week, we are going on a family holiday to southern Spain, I just hope I am well enough to travel. I feel like my body is shutting down on me bit by bit....it's frightening. 'Me' inside is raring to go....my vessel however has failed it's MOT and needs some serious restoration works.

As for the panic attack....
Not sure what set it off, as it's all new to me, the only other time it's happened is when I had that breakdown at chemo last year.
I think it was a combination of several things....having to remove my patches, knowing they wouldn't stick properly afterwards and I hadn't brought replacements. Then the first time I went to go into the tube I got jammed as the weight covering me wasn't tight enough so jammed at the entrance. Then the second time as I went in, the pillow that was under my head got stuck and was pulled out from under me, so naturally you want to adjust it yourself, but can't....so I had to call to the nurse who adjusted it for me. Also I am sure last time I had a panic button to press....and didn't have one this time. So...maybe all of this just started the ball rolling. All I know is I think if I were to have to do it again, I am not sure I could....I may have to request to go back to CT instead. *sigh*

My patches did get put back on, but wore off quickly....wierd thing....apart from the pain....my right leg stopped working...just like a dead leg type of thing, so not sure what that means. But lung wise, I'm lucky so far, no shortness of breath - but my fentanyl patches hide a multitude of sins.

Anyway, take care all and I will try and read the other posts,

Juliana x
p.s. Happy Belated Birthday Clair *big kiss*

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Clair and Blue (Part 2)

Postby Ellie » Fri May 28, 2010 9:29 pm

Hi Juliana

So sorry to hear you had bad news from your scan, too. It's so hard learning things are getting worse, not better but it sounds as if you are still actively seeking out new treatments. You are such a positive and brave lady and I really hope that the docs will come up with something new for you to try.

Just want to wish you a very happy holiday. Hope you get there ok and have a wonderful time. Enjoy every minute, Juliana.

Take care and hope the weather and change of scenery will do you the world of good.

Love
Ellie
x

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Clair and Blue (Part 2)

Postby clair2305 » Sat May 29, 2010 4:07 pm

Hi all

here's our update. Sorry for not posting sooner, but have been busy this week with Ebay bidding as well (without sucess as yet).

We went to hospital Tuesday and saw Blue's consultant.

His CA19-9 on 29th March was 12.

The CT scan showed that the disease in the liver was stable. It also showed that there was a thickening in the tail of the pancreas and Blue's consultant thought that this is what is causing the pain.

The CT scan also showed an 'irregularity' in one of the bones in Blue's spine but the consultant said that this had been reported as though this was not new and Blue said that his first MRI when he was in hospital showed more than normal wear and tear in his back.

The consultant said that he was going to look at the scans in depth and get back to us. He may order a bone scan and a some radiotherapy for the thickening in the pancreas tail. He also said that Blue could have another month off chemo and that it is very rare to see spread to bones with this type of cancer.

He also prescribed Zevredol tablets (like Oramorph but in tablet form). He thought that Blue probably needed his slow release MST increasing and that after a while of being on the same dose, you just get used to it.

He rang the next day and said after looking at the CT scan in depth he was sending Blue for a bone scan and that he was going to speak with his colleague about some radiotherapy for the pancrease tail. Blue has the bone scan on 4th June (whole body with the radioactive injection) and I should imagine we would probably hear from his consultant on Tuesday after the MDT about the radiotherapy.

Sometimes I feel like they give with one hand and take away with the other. I'm trying to stay positive and I know that not everyone is the same but after reading Ellie's post I'm absolutely S&&T scared.

Ellie - you and Brian are in my thoughts

Juliana - I hope you have a great holiday and some fun in the sun. I'm sorry to hear about your results, bit the same as us - give with one hand and take away with the other *sigh*. As for chemo or any other treatment, could the hospital not offer you home treatment or at the hospice, somewhere other than the day chemo unit. ANd what about a PIC line to protect your veins.

Let us know what you hear about Reolysin and CV247? Have a great hol xx

Nicki - any news on Ted's results.

Signing off now, don't know how to feel, low, positive, neutral, but definitely scared.

Take care

Clair

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Clair and Blue (Part 2)

Postby Nardobd » Sun May 30, 2010 4:58 pm

Hi Clair

Just a shortie cus I'm choked by Juliana's post. Sorry to hear that the scans were'nt as [positive as we all would have liked. However the CA19-9 is in a good place, so let's hope that the changes on the scans aren't the scary type.

No news on Ted's just yet - I can only assume that means not-so-good news because it's taking longer than it ever has before. I've chased for an appointment and will do so again on Tuesday.

Kind regards
Nicki xx

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Clair and Blue (Part 2)

Postby Ellie » Sun May 30, 2010 5:52 pm

Hi Clair

I know how you must be feeling......

Try not to be panic - if you read my post on my thread, you will see that the doctor at Brian's hospice said she had known patients survive for 2 years with spread to the bones, so it may not be as bad as you are thinking right now. Blue also may be lucky, in that they have found it early and can treat it with radiotherapy. I really wish we had asked for a scan for Brian earlier in the year, because he has tumours in 6 parts of his spine, one of them measuring 2cm, so it's obvious that these have been growing for some time without anyone knowing about it, apart from Brian with the amount of pain he's been in!

Keep positive, take one day at a time and enjoy whatever fun and happy times you can.

Love
Ellie
xx

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: Clair and Blue (Part 2)

Postby clair2305 » Wed Jun 23, 2010 1:29 pm

Dear All

Just touching base, been away from the board for a while because I found it too upsetting. Glad Juliana had a great holiday and to see you back on here.

The news for us has not been good, also spread to spine in Blue, like Brian.

I will update soon, just feeling really pooey today.

Clair