Clair and Blue (Part 2)

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

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

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

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

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

Hi Clair,

Sorry to hear it has spread.

I just had my scan rechecked for spinal involvement due to my right leg not working when my pain killers wear off - but they can't see anything. Which has been the story throughout this ordeal....just can't see it.

I can appreciate how you feel at the moment, it's hard to bounce back from the bad news - I find it harder every time, I'm still waiting for the up this time around, if it comes.

I hope you and Blue can find something positive to focus on, have they decided what will be next? Radiotherapy on the spine? Is Blue in pain with it, or are there no symptoms yet?

Answer when you can.

*hug* to you both,

Juliana

Hi Clair

Have just got back from a week away in our caravan and seen your post about the spread to Blue's spine. I am so, so sorry to hear this. Has he been offered radiotherapy at all?

All I can say is that Brian had one session and within 2 weeks was SO much better, pain-wise. He hardly has any pain in his back/shoulders and is in the process of cutting down on his painkillers every week. It's been amazing to see him travel around in the car, down to Derbyshire and back up to Lancs, without having one single journey where he was in pain from the car bumping about. No matter how carefully I drove before (and - bearing in mind I am an ex-driving instructor and member of Institute of Advanced Motorists - I definitely COULD drive carefully and smoothly! - he was always suffering every time we went out. He used to take his painkillers before we set off, so it would minimise the pain while travelling but I still used to feel like I was the worst driver ever when he was in pain from all the bumpy roads.

He did wake up in pain in the caravan every morning, but that was the cushions we lie on - soon sorted out by putting thin pillows under him and last 2 mornings he woke up fine! It's been one of the best week's we've had away since he became ill! I'm not saying he's 100%, of course - he finds it hard to walk too far without feeling weak, so I suggested using one of our walking/hiking sticks as a bit of support, which has helped him. He's had several bouts of nausea, which I think is from the radiotherapy, but has tablets to help with that. So, overall, it's been a bit of a "wonder" treatment for Brian. I don't know how long the effects of it will last, or what will happen after that, but we're making the most of him suffering so much less pain that he was before.

I hope you're feeling a tiny bit better now Clair. I know it hit Brian very hard when he learnt it had spread to his spine, but he's bounced back again and is so relieved that his pain has been mainly taken away after radio. I hope that Blue will get the same positive result if he has radiotherapy, too. Unlike cancer in the liver, I feel relieved that at least something can be done if it is in the spine.

Love

Ellie

x

Hi Ellie and Juliana

thanks for your replies, and this is just a quicky, cos not really up to it yet.

Ellie, Blue has had one session of radiotherapy on his back on 16th June, but as yet he has had no relief from it. They did tell him to continue taking his pain killers for next 48 hours but it's been 10 days now and no relief, if anything worse. Can I ask how long it was before Brian felt the benefit?

Blue also like Brian has it in the liver, and to be honest, those are the only tumours that have shrunk! although stable at the moment.

Is Brian being offered anything else? Treatment wise? I was just a bit confused by your comment "something can be done if it's in the spine" - are you referring to anything other than pain relief. Basically we've been told no more treatment.

Blue has appointment with palliative care doctor at hospice on Thursday to get his painkillers properly sorted.

This quicky has ended up a longy, so I'm gonna sign off now....will update properly on Blue in the week.

Juliana - thanks for the hug

Lots of love to you all

Clair

xxx

Hi Clair

Sorry if I confused you. I just meant that radiotherapy could be used for cancer in the spine, as opposed to more pills/chemo. Brian absolutely refuses to have chemo again, so I was relieved there was "something" he could have to help with his back pain, but we knew it was only pain relief, so sorry to mislead you. His pain did seem to get worse at first, which we'd been warned about, and he did have his painkillers increased too, but it was somewhere around the 12th day after treatment that he felt much better. He used to be taking OxyNorm for breakthru pain at least 3 or 4 times a day, but now he's not taking any and his OxyContin slow release morphine has been reduced twice a day also. To us, it's been a relief that a different pain relief was available, that's all.

I hope Blue starts to feel some improvement any day now. They say 8 out of 10 people do benefit from radio, so fingers crossed for him. If your hospice is as good as ours, then Blue should be well taken care of there. The doctors and staff there have been absolutely fantastic, offering such a personal service and they just can't do enough for him.

Love

Ellie

x

Dear All

I'm back in response and research mode now.

Anyway,just a brief update (more to remind myself what I've said or not said)

Blue's CT scan on 19th May showed irregularity in one of the bones in his back as well as a thickening in the tail of the pancreas. Went for bone scan on 4th June. Then on 14th June went to see a doctor about radiotherapy which we thought was for the thickening, it was only when we saw the doctor she informed us it was for the spine and talked as though we knew the results of the bone scan. I had to stop her in her tracks saying "oh have you got the results of the scan then?" which she said she had and that the cancer had spread to one of the bones in the back and one in the shoulder. To say I was and still am devestated is an understatement.

She asked Blue if he had any shoulder pain and Blue said no. To be honest, every time I asked a question I felt like a naughty schoolchild and didn't like her bedside manner....as Blue put it she was a bit "matter of fact". She obviously thought we knew although how she could have thought that I don't know as I had told her secretary the bone scan date when she made the appointment with me, i.e., Blue was referred to her before he had his bone scan.

So Blue had his radiotherapy on 16th June. He was told to continue taking the painkillers for the following 48 hours and that then the radio should take effect, but I know now they were being optimistic and in response to Ellie's previous reply to me, Blue also started to feel better on day 12 (strange but true whooooo - meant to be ghost noise). He slept well that night and has not had to have so many paracetamol and no ibuprufen (on top of MST) for a few days now.

Anyway, back to hospital on 22nd June, where Blue's consultant basically said no more chemo and there's nothing else they can offer. I will be queiring this, as Blue has not had chemo since 8th March, so why is he saying it's no longer working. Blue says it's because chemo is meant to continue after having it (not just whilst having it), but I'm going to get this clarified at the next appointment. Opinions guys n gals please?

He also said that whilst there are clinical trials he can refer Blue for in London (Marsden) or Leicester, he said that these are very experimental trials, first time of being used on humans and that the benefits are low. He said we would have to weigh up the travelling, benefits, etc especially is Blue is not feeling well. He also said we would know nothing about the trials until we arrived. Anyone know of possibly trials at the XX or XX ??

XX

The consultant came back in and apologised for making me cry.....I said it was him making me cry it was Blue's pancreas.

He said from now on he would see Blue every few weeks. He also said he would refer him to a palliative care doctor to get Blue's pain control sorted. He said he could suggest things but that he thought it best that one person have an overall look at Blue's pain control.

So then I spent the next couple of days crying, but when Blue got upset on the phone to his mum (I had to take the phone and end the call and sort him out), he said he feels guilty cos everyone is upset, and as I've said on another post, I pointed out to him that he has nothing to feel guilty about and that we are all upset because we love him. So I've been trying to keep my emotions in check since then, it's not fair on him. Oh I have cried, just not constantly.

Blue had his appointment with the palliative care doctor at the hospice on Thursday, 1st July. It was good because his mac nurse was there and could verify Blue's pain and the attempts she and our GP have made to control it. Because as I said earlier Blue has started to feel better like Brian 12 days after radio and when the doctor was asking him how he felt, he said he felt fine. But she was really good. We explained that Blue doesn't like the taste of the oramorph and that it wasn't just that getting a child to take medicine feeling, it was that the taste lingered in his mouth for hours after, despite eating after or putting it in juice.

She said that you don't really feel the fully benefits of radiotherapy until 5-6 weeks after, so fingers crossed for that. She examined Blue and went through all his medication. She felt that for the next couple of weeks keep it as the same (120mg MST twice daily) as take the paracetamol, ibuprufen and oramorph if needed....as well as all the other medicines for bowels. But she felt that it may be that Blue in a few weeks, could drop his MST dose to possibly 90mg twice a day. She also said to watch out for increased tiredness as sometimes if you have been on it for a long time, it just makes you increasingly tired and that if this happens she would change Blue to Oxycontin (think it was that). But all in all she was really great, said if Blue wanted to see her again, just to call and obviously our mac nurse will keep in touch and report back to her.

She also said Blue could see a dentist (remember the broken tooth that broke the first week of chemo and he wasn't allowed to have sorted)....well that has been rearing its head again.

So now to monitoring sleepyness, I mean the MST makes you drowsy anyway, it's so hot it's hard to sleep so sometimes Blue naps in the day. Blue gets tired easily now, can't walk far because of sweating associated with PC....also made worse by the summer. Being skint means not being able to do much and so then I'm sure Blue drops off cos he's bored (my company must be riveting ) But just typing this I'm thinking I've noticed he has been sleeping better of a night and less in the day.....so fingers crossed for more beneficial effects from the radio.

As for no further treatment, Ellie, what's you and Brian's experience?

They also said they wouldn't be doing regular CT or bone scans, just as and when necessary???? Thoughts please.

I've been emailing the research doctor at CRI and will be discussing this at the next appointment.

Lots of love to you all and as always thanks for your support.

Much love

Clair

Hi Clair

Just to add that Ted wasn't scheduled for regular scans after his chemo finished. However, when the tumour markers rocketted a scan was done - so it doesn't mean that Blue won't have any more, just that they will only happen if the doctors think it necessary.

How are y ou getting on?

Love

Nicki x

Hi all

firstly, let me apologise for my ever so long message last time....there was me saying a brief update....when it was more like a full committee paper completed with conclusion !!!

And Penny thanks for your information. I did look at the trials and I think Blue would be excluded from them both unfortunately.

And Nicki, thanks for your message too. I'm fine, well you know what I mean.

I did ask about the chemo and was told that if it had been 6-12 months since Blue had finished chemo and then he had showed progession they would have said to go back on GemCap, but as his last chemo session was 8th March and his CT on 19th May showed progession, they concluded that this is a short spell, they expect the chemo to be working for much longer. At least I asked. I know if I didn't ask it would always be rattling round in my head.

I also asked about Abraxane and yes it is showing promising results but Blue's professor said they are watching its progess at the moment.

The trials in Leicester and at the XX are based on Dr Tuveson's work and they expect to have some there at XX in September but they said Blue really needs to say now if he is interested and he is not. I think because they are Phase 1, so only previously tested in the lab, Blue is reluctant as he said he doesn't want to go through lots of side effects, feeling sick all for a extra few weeks. I'd like him to try but I know I have to respect his decision.

I asked Blue if he'd like me to contact Dr Tuveson about this and his answer was "I'm not that bothered it's up to you" which tells me his feelings. But I am still going to email Dr Tuveson and see if there are any findings, etc so far in the trials.

Blue has also (on Monday) has his MST increased to 150mg twice a day. But to me honest, although it is helping with the pain, he has had nausea and been sick since and drowsy. So he is taking domperidone and hopes that the nausea will subside in a few days. We are going to Southport on Monday for 5 days, a little break in a caravan and also wanted to be close to Liverpool to do some cultural things as I've not been to Liverpool before whereas Blue used to work there.....was involved in the Liverpool One shopping centre build. He mentioned dropping his MST back to 120mg and having the oramorph and ibprufen as he wants to have a nice break. I just hope the sickness wears off and that he can enjoy it. I can see another trip to the palliative care doctor and another change of medication on the horizon. I just want him to be pain and side effect free as these past few weeks have been a bit of a juggling act with those.

Signing off now....been on laptop too long and can feel a committee paper emerging if I don't stop

Clair

Another quicky....Blue also lost 3kg in the last 3 weeks....a little concerned but as it's summer and in his words 'he just wants picky foods' I'll let it pass this time. He has been losing weight over the past 7 months (a stone in total). I will see what next time brings and if so, start the Fortisip again.

Also....a year tomorrow since his first CT scan and 11 months since he started treatment

ttfn

Hi Clair

Sorry to hear that Blue's meds are causing problems - it's finding that happy balance between symptom control and excessive side-effects that is so difficult, isn't it.

Ted isn't overly keen on trials either so I know how tough it is to have to step back and accept that it's their decision that counts...of course I want Ted to try everything, but I have to keep reminding myself that it's his body!

"Picky" summer foods is difficult to deal with but there are ways and means: Keep a small stock of fattening combinations of Blue's favourite foods in the fridge - so if he likes ham, keep some ham and cream cheese bite size bits on puff pastry...some savoury 'picnic' stuff is always a good idea (mini eggs, cocktail sausages, chicken wings etc). If he likes sweet stuff then keep 3-4 profiterols in the fridge or mini muffins. It is amazing how much people eat if they do it in bite-size pieces and it means that Blue can pick all day rather than have the ordeal of sitting down to a plateful of food.

Thinking of you both

Nicki x

Hi Clair

Just wanted to say hi and ask how things are. I know you were going to Liverpool a week or so ago. How was it? Did everything go ok? Hope you had a great time.

How is Blue doing? Has the radio helped more now? Did the OxyContin help?

Not sure when you're going to Spain but if you're around, let me know how you are getting on. Hope everything is ok for you both.

Love

Ellie

xxx

Hi all

just a quickie, gonna start a new thread....

Clair