Clair and Blue (Part 2)

[clair2305]

Dear All

I've been a bit quiet on here lately and if I'm honest, it's because the computer is in the teenagers bedroom which is like a bombsite which I shut the door on to try and pretend it's not there!!

Anyway, to the important stuff

We went to the hospital yesterday (another very long day). Blue's CT scan results are that the cancer is stable. When I queried this they said the tumours had not changed in the last scan in December. We know this is good news but did feel a bit cheated. We've had one bad scan (the first once starting chemo) then the good one in December with shrinkage and now this one. I said to Blue "it's good news" and his response was "yeah but would have been better if they'd shrunk some more". We're not moaning obviously it's great that it's stable.

We spoke to the oncologist about Blue missing Day 15 of the last two cycles because of his platelets and the lowered neutrophils. We also told them about the nausea Blue was feeling. The doctor checked through his notes and Blue's previous blood test results and said he thought it would be good for Blue to just have Day 1 and Day 8 on this cycle (his 7th cycle). Blue just has to have a blood test at the GP on Day 15 to make sure his bloods are okay so that he can continue taking his capecitabine.

He is very very tired, dozing a lot more and today he has been sick. He was fine at breakfast, had the one slice of toast, but at lunchtime I made him a sandwich, he took one bite and was running to the loo to be sick. He says he is ok (but I know he has a high pain threshold). He is taking his domperidone and at the hospital yesterday they gave him another sickness tablet he can take if he feels nauseaus (another packet to read of side effects that just fill me with dread) alongside the domperidone. It's a tablet normally for pain or schichophrenia (????) and the dose is really low (1/4 of a tablet), so he's just had that too and I've read him the riot act of side effects.

Yesterday was good news but today I'm feeling a bit disheartened. I know really he gets off pretty well with the side effects, just tiredness and his pain is controlled, his weight is back to normal and the chemo is working (even last week when he wasn't sleeping I was ok but I wasn't too and I know it was because of waiting for the CT scan results) but when he is sick like today and feeling a nausea (which puts him off his food) it just makes me feel a bit crappy too.

Clair

[Nardobd]

Hi Clair and I'm sorry you're both having a down day. I know how difficult those days can be and how worrying it is. Most days, Ted and I pick each other up when one of us is having a rubbish day but on Sunday we were both having a tough time and it's horrible. So, no magic wand here but at least you're not the only one!

Ted's scans were exactly the same - shrinkage after three months of chemo and then no change. I felt disspirited but subsequently was told that there wouldn't necessarily be any change because the original tumour leaves scar tissue which shows on the scan. So, even if Ted were "cured" (which we know he's not) there would still be scar tissue and the scans wouldn't be 'normal' because of that scar tissue. The good news is that the last scan he had in January this year still shows stable disease, nearly six months after finishing chemo...that's got to be promising and I hope that Blue has a good long stable period after chemo too.

By the time Ted finished chemo he could have slept on a washing line! The tiredness and nausea were the only real side effects he had but they were so very debilitating. It sounds like Blue is having similar problems. The only light I can give you at the end of the tunnel is that it does get better afterwards. It probably took Ted a couple of weeks at the end of chemo to start to feel any better but it gradually improved to the point where he is almost back to where he was before diagnosis.

Anyway, I'm rambling on....all I wanted to say is you're not alone and if you need a shoulder, we're here.

Love
Nicki x

[Juliana]

Hi Clair,
The positive to hold onto is that the cancer is stable, all of us would prefer to hear the words 'shrinkage' and 'gone' - but I would certainly take 'no change' over 'increase' or 'progressed' any day of the week! The way I see it, I can 'live' with the tumors if they remain the size they are....it's when things get bigger and spread further that cause the problems.

I'm sorry Blue is feeling so crap on the chemo, and of course it will affect you too when he is at his lowest - the only things I can suggest are that he tries to sleep through as much of the side effects as possible, or finds a distraction - reading is good, if your eyes and concentration allows....but something that can absorb you for hours = computer games! It may sound foolish but I know from experience how it can 'remove' you from the pain you are feeling for as long as you are allowed to play.....you just need to find a game that really hits the spot (mine is World of Warcraft....I play a druid ). It's all about rest and distraction!

As for the new anti-sickness.....if you are worried about it ask for something else:
Metoclopramide
Ondasetron
are two other types I was subscribed as well as the domperdione

Anyway....I hope you guys are doing well regardless of everything that is going on, take care -
Juliana x

[clair2305]

Dear Nicki and Juliana

thanks for your replies - yeah I know stable is good really.

I do think this chemo is taking it's toll on Blue. At the hospital yesterday they weren't sure how many cycles he was down for, 7 or 9 was mentioned. This is cycle 7 he has just started but to be honest I think he is due a break.

Like I said before he has got off pretty lightly with the side effects, but he was also sick again at dinnertime yesterday, one bite of sausage plait and was throwing up, so had half a large tin of pineapple chunks for his dinner (and so he could take his capecitabine tablets). This morning was again pineapple for breakfast (again to take tablets) and he managed to keep that down. But we've just had lunch, which was two chicken drumsticks (proper chicken ones, not Mr Matthews reformed toot). I cooked them plain with nothing on them. He ate them slowly and they stayed down for about 5 minutes, then he was being sick again.

I don't know what to do. I asked him if I should call the Mac Nurse or the Day Unit and he said no and I think maybe he's right, it's just cumulative side effects catching up on him. So I reckon a stock up on pineapple and other fruit when I popped to Tesco is what I will have to do. Maybe some things he can eat cold (pork pie??).

What are your experiences of the side effects of chemo? Anyone had this sickness/throwing up? What foods can you keep down better? How many cycles of chemo did people have before they had a break?

Still feeling crappy today (because Blue is) and have to go shopping but don't really want to as I don't want to leave him on his own (stepson is indoors).

Anyone heard anything more about photodynamic therapy? Any other PC research?

At the weekend I was also feeling a bit selfish, why do all the 'fashionable' cancers (I use fashionable very loosely) get loads of funding and research. My mum is two years free of womb cancer and my mother in-law is a year free of breast cancer, so I know I really wouldn't want it any other way, but when I was being told about someone who had cancer of the palette and had PDT and is now cancer free I had to bite my tongue. I'm really sorry ladies (and guys) feeling really teed off, but why when so many famous people get PC is there no more prominence.

Sorry for my whinging.

Clair

[LilyG]

Hi Clair,

Having been a pretty avid reader since Trevor was diagnosed late last August, I was quite surprised when I saw that Blue was on his 7th Cycle. Trevor has just finished his 6th (last IV was 2 weeks ago but could only have 75% due to low platelets) and he is now on, what I guess, is a break (although I must admit it's all been a bit vague). He has his 2nd CT scan on 10th March and then we get the results on 18th March - so his break will be at least 4 weeks. Although he absolutely hates chemo and especially going to the hospital and the routine of it all, he suffered relatively little (but then he does suffer in silence: the type of person who is in pain at home but when the Oncologist asks he says he's fine): swollen ankles and hands from Cycle 4 onwards and a bit of cracking to the skin on his feet along with twinges under the rib cage intermittently. One thing that did happen (although not consistently) was unexplained vomiting. He'd eat, say, some crisps, toast, whatever and be fine and then two hours later have one spoonful of soup and immediately run to the toilet - there appeared to be no pattern or rhyme or reason. Last time he took a bite of asparagus and spat it out saying it was the most powerful taste he had ever had and he would have been sick if he had swallowed it. Psychologically, he is / was suffering: gets a nervous spasmodic cough and sneeze when he even writes the words hospital or IV in an email and is almost always sick as he's waiting for his IV. Sickness tablets haven't worked for him but he has been given lorazepam to calm him which seems to work as he goes to sleep during chemo and then when he comes home and feels hungry when he wakes up: he takes half a tablet the night before, half in the morning when he gets up and then half when he gets to the hospital: they are quite mild and I can't say that it solved the vomiting but it did relax him and he was more tolerant.

Really scared of the outcome of the CT: unlike most of you, Trevor saw no shrinkage of his tumour after 3 months and it is very large; also I am not convinced that these 'cysts' from the 1st scan are 'nothing' but I guess we will know in 2 weeks.

Take care all,

L

[Nardobd]

Hi Clair and Lily

Firstly, Lily, Trevor is in the majority - we were told that it was fairly unusual to see shrinkage after chemo. From memory, I think only about a third of patients do so. Blue and Ted just happen to be lucky, but don't think that means their chemo was any more (or less) effective than Trevor's. Like they say, size isn't everything!

Yes, Clair, I know a little more about photodynamic therapy. Ted was actually accepted on to the PDT trial at UCLH but after discussing it with the research consultant and registrar, we decided that it wasn't right for him due to a combination of factors. I'm sure that it's absolutely the right thing for some patients and I don't want to put anyone off by emphasising the negatives (some of which were unique to our particular situation), so I won't go into detail here.

Basically the trial is in the early stages and they are testing light dosages with a non-clinical laser. They are not looking for a "cure" at this stage, just seeing what is safe and how well different dosages work. Patients need to stay in hospital for five days with treatment on day one only. The remainder of the time is ensuring that the patient is comfortable and monitoring. If considered appropriate, treatment can be repeated and it doesn't rule out subsequent chemotherapy.

One of the things which will absolutely exclude anyone from being included in the trial is if they have mets (ie if the cancer has spread anywhere else). This is one of the criteria which is non-negotiable and which they are unable to relax.

Research elsewhere is patchy - there are a few trials and I did read a while ago about a hospital in Italy which removed a tumour by heat but it wasn't publicised further so I'm guessing that it wasn't a "miracle cure". A lot of the current trials seem to be about diagnosis and finding out whether chemo will help individual patients - all very well but what about those who already have pc?!

There are a few trials in the US and elsewhere (Manilla, for example) but I've discounted those for Ted and I'm sure most others would too, both because of the incredibly high cost (we're talking in tens and hundreds of thousands of pounds) and because some of the drugs are not approved and side effects haven't been established. I am keeping up to date with current research using the internet, it's a painful and sometimes frustrating business but it's one of the ways in which I cope. Of course, if I hear of anything which I think might benefit others I'll share it with you all

Nicki xx

[clair2305]

Der Lily and Nicki

thanks for your replies.

Blue also has some cracking on his heels and yesterday his feet and hands seemed shiny. I know this is a side effect of the capecitabine tablets and we will tell them about it on Monday, but alas, like Lily's Trevor, Blue does suffer in silence....think he also gets fed up on me asking him if he's ok too. He has perked up today and no vomiting today or yesterday, we even went out for Pie n Mash n Liquor (an East End thing and we have a great pie n mash shop here in Suffolk). I think next week we should just try cold foods and probably just stick with the fruit for the first few days after chemo, but I don't reckon Blue is going to manage 9 cycles without a break (even if he only has 2 Gemcitabine infusions on each cycle), I think a break may be in order earlier. The hospital we go to will not give chemo if the platelets are below 100.

He has been so knackered this week, obviously the chemo zonks him, then not being able to keep anything but fruit down till yesterday and fruit doesn't give you energy and then wasting energy on throwing up.

I do think like Nicki says Blue and Ted have been lucky, our consultant told us they only seen shrinkage in 20% and up until this cycle Blue has been great on the chemo, just tired and he only started developing nausea on the last cycle and the vomiting on this cycle, I think that's why I've found it hard, because despite the long list of side effects from the Gem and the Cap he has got off well.

Juliana, thanks for the tips about games. I do play a few on Facebook, but I reckon i should try and get back into my WiiFit, I reckon that may have to wait, just started a book my Mark Billingham that I know is going to be great. Also just read Brixton Beach by Roma Tearne which I can recommend.

Nicki, thanks for the info re PDT, as Blue also has mets he's prob not suitable either.

Well, I'm signing off for now. Thanks for picking me back up ladies. Hope you all have a lovely weekend. We are meant to be going out for a friend's birthday, so fingers crossed.

take care

Clair

[LilyG]

Ooh, ooh...I do love a good book so thanks for the recommendations. I have recently read 'Of Bees & Mist' which once you get into the imagery is unputdownable and transports you elsewhere - the only book that I have managed to read whilst Trevor was having his IV (normally to noisy) and 'Under This Broken Sky' which is quite bleak but a good story well told and left me gasping in parts because you know what's going to happen and you want to stop it but just can't, dammit.

Have a good weekend x

[clair2305]

Dear All

just a quick update. As you know Blue was not having day 15 yesterday but had to have a blood test anyway. Afterwards we went to Southend and to Leigh on Sea. Was a bit cold yes, but got some seafood and drove home. Better than sitting in a hospital waiting area any day.

I rang today for Blue's blood test results. His platelets were 78 and his neutrophils are at 0.5, so he is neutropenic again and has to stop this last week of capecitabine tablets.

So next week is chemo free week and back to clinic for 29th March, for what could or could not be Cycle 8.

I've also found something about papayas, but I will post separately with links.

How's everyone? Any miracles appearing? I am happy today but also angry (esp after reading how long Juliana has to wait for her barium)....this government is not interested in pancreatic cancer. And it appears targets are for targets sake, they are what they are, numbers and having nothing to do with people.

Clair

[clair2305]

Dear All

grrrrr, back to hospital on Monday, not been there since 8th March!

How's everyone?

Clair

[Nardobd]

Hi Clair

We're ok thanks...no miracles but I'll settle for this for the time being - miracles next week please!!

You're obviously frustrated at having to visit the hospital. How does Blue feel about it? Do you think the longer break makes it harder to face the next treatment?

I, too, would like to hear how others are getting on, so keep us updated folks.

Nicki x

[clair2305]

Dear Nicki

no, it's not me that's grrr about the hospital it is Blue. Don't get me wrong, I can think of better ways of spending Mondays, but really I'm ok with it, cos I can 'see' Blue getting treatment and anything that helps is what I want.

Anyway on Monday all was fine at the hospital, the doctor asked how Blue had been and he was honest and said that he had been vomiting this last cycle (no: 7). We said we knew they wanted to give him a break after 7 or 9 and the doctor thought it would be a good idea to have a break now, which Blue is obviously chuffed about....I bet it was the same look you saw on Ted's face when told he could have a break

Blue had his portokath flushed and has to have it flushed again on 26th April. He has to have a CT scan in 7 weeks and back to clinic on 25th May and she said they would take it from there.

So I reckon from next week we will really start to relish the break. How long has Ted's break been so far?

Best Wishes.

Clair

[Nardobd]

Hi Clair

Ted's been off chemo since September 09 and the plan is that he won't re-start chemo unless and until there is some sign that the cancer is becoming active again. It seems that some consultants feel it's better to do a six month course and others like to just continue chemo throughout, I would guess at the end of the day it depends on the individual, how aggressive the cancer is etc, but it might just be individual consultants' preferences.

Have a great Easter now that you can look forward to having a break from the hospital for a while.

Kind regards

Nicki

[clair2305]

Just wanted to let everyone know Blue has his CT scan on 19th May, with results on 25th.....everything is crossed (except my eyes)

So how is everyone else? Nicky, Ellie, Juliana et el, how are you enjoying this sunshine.

Also, just a couple of questions...

What supplements/foods etc are people taking? Juliana are you still taking the turmeric? How did your appointment go on Wednesday?

And does everyone with PC have diabetes? For Blue it was one of the indicators (diagnosed a month beforehand) but I wonder really if he does, his blood sugars are normally within 5-7 (and mine was 8 the other day, probably the easter egg) and I kind of wonder what they would be like without the insulin and what the tumour would be like also.

I just want to say again to you all thanks for your support....even nearly 9 months on, I still feel a newbie.

Best Wishes

Clair

[pennyb]

Hi Clair

just a quickie

hope all goes well on 25th May

no not every patient is diabetic - my husband wasn't

enjoy the sunshine