Finished chemo & having a rant ;)

Hi Juliana

Good luck for tomorrow/whenever someone calls you. I'm keeping my fingers (and everything else) crossed for you

I had to Google "eglu" to find out what it was. How cute!

I narrowly escaped being in the same position as you - we got our Yorkshire Terrier, Heidi, around two months before Ted's diagnosis. We've found that she's an absolute boon during this terrible time. Sure, she needs picking up after and we would probably have put more effort into house-training her if Ted hadn't been ill but that's more than compensated for by the comfort, love and laughter she gives us. Being a small breed, she doesn't have to have long walks each day and if we're busy she can get enough exercise in the house and garden (although she does enjoy going for a walk when we can).

Yes, I suppose Heidi is a bit of a distraction. When Ted was in hospital at the time of his diagnosis, I would go home and cuddle her and have a little cry, then I'd concentrate on her needs so that I wasn't just brooding. I started a new job last week and Ted's found her absolutely invaluable. She sits quietly beside him and demands a hug now and again. She's so very good with him and gentle when he's having a bad day.

Whether it's right for you is a decision only you can make. I can say that in our case we feel that it was absolutely right and don't regret our decision at all. I don't think either of us would have coped as well if Heidi wasn't around. I'm sure that you'll reach the right conclusion for you and the family and it's not as if it's going to happen overnight - you need to find the right dog and may even have to wait until it's ready to leave the mother, so you have a little time to finalise your decision.

Let us know how the phone call goes.

Best wishes

Nicki

Hello all,

Well - I had my scan results, and they were good.

Basically, I have 10 tumors in my lungs, the biggest one being 11mm - the scan revealed that some had increased in size a tiny amount whilst others had decreased in size - a tiny amount. There is no spread, or new growth anywhere else, and they are pleased with this because I had not completed 3 months of treatment which is the standard (I'd only missed 2 sessions) and so the results show the cancer is 'stable'.

The other bit of news....which we found a little confusing is that the tumor around the Superior Mesenteric Artery had not grown either and was now being classed as post operative and radiotherapy 'scar tissue'. They could not say for definate of course, but the Dr. I saw today said that going on his clinical judgement he would say it was scarring. Of course they would monitor it - and if it did change shape or grow they would then treat it as a tumor.

My husband and I were a little dumbfounded at this, as my oncologist was specific about this tumor in our July and August meetings, and hadn't once mentioned it could be scar tissue. So when he returns we will check with him and see if he agrees with the change of 'status' for this tissue/growth.

They cannot take a biopsy even via keyhole as apparently I have so much scarring in that region it would be impossible to access the tissue for a sample, so it's CT scan only for results on that.

The next step is more chemo. They want to continue, 3 weeks on 1 week off - indefinately or until it no longer has an effect on the cancer.

I am a little unsure about this approach as I am worried I will become resistant a lot quicker if I do this type of treatment on a permanent basis.

I did ask if I could do 1 week on, 1 week off etc, or find an equilibrium where I can emotionally tolerate the sessions. They said it wouldn't be the standard, but if that's what I wanted - then yes.

They also said that if I wanted to take an alternative route, they wouldn't advise I did it the same time as chemo - but they would monitor me, and scan me to see if there has been any change. Which I was very happy about.

I mentioned B17, again not much feed back on that however my specialist nurse said one of her patients swears by 'Mistletoe' therapy - but as a nurse at the hospital she couldn't advise on it. They also agreed chemosensitivity tests may prove helpful, but again they couldn't offer the service to me. They did say that if the standard treatment was no longer working they would refer me to the Marsden, and that they were more than happy to put my scans onto disk so I could take them with me to other clinics for further investigation etc.

All in all - a good meeting I think, tonight.....I will sleep

Juliana x

p.s. almost got a puppy today.....but seller wouldn't come down on the price.....let's hope she will change her mind

Wow Juliana, that's really good news! I'm so pleased that you got so much comprehensive information and another opinion on the situation. Do let us know what your oncologist says when he returns. I'm pleased that they are trying to accommodate your needs as regards chemo too - if you can get to a position where you feel it's under control that will be much better for you psychologically.

A good night's sleep is definitely in order!

Best wishes

Nicki x

Thanks both

As for the goodnight's sleep.......not so sure that will happen now that I've gone and got a puppy......oh dear.

I just hope I haven't had a terrible case of premenstrual shopping......you know how those hormones make you think orange striped jumpsuits look really nice on etc....

She's 4.5months old - and a little bit mental (although most staffy bulls are, until they reach about 3yrs old). I just hope I haven't bitten off more than I can chew. We haven't even told our parents we've got a dog......lol. The kids are a little scared of her as she nips a lot, I'm just hoping she will grow out of it - soon! I was hoping to get a 1yr-2yr old bitch, but there are not many around, and the rescue homes won't allow you to have a staff if you have children under 5yrs old (which I totally understand, but having had one for 12.5yrs I am hoping this one will be of a similar temperament).

I will definately update the thread when I hear from my oncologist, it's quite a major factor in how we perceive the treatment/future to be shaped around - I truly hope he feels the same way - I don't think I could cope with conflicting verdicts on it.

Anyway, speak soon -

Juliana x

Congrats on the new dog. I'm sure you'll love her dearly and she'll be such a comfort to you.

What have you named her? Let us have a pic when you have some.

Nicki x

We've finally named the dog........she is now called 'Eva'. (if anyone has watched Wall.E. they will understand!)

I do have pictures, but don't know if I can upload it to the forum.....will try.

Here is my current update:

I had a long chat with my oncologist today. An hour long. He wasn't willing to commit to the tumor around the artery being scar tissue, so I think he still thinks it is a cancerous growth, still - he was pleased that the ones in the lungs had remained the same(ish) and there were no new growths. He brought alot of notes and research with him, from a meeting in Barcelona he had been to - discussing new drugs/trials etc. Basically Gemcitabine is the best one to be on. There is nothing else out there that seems to perform as well as it. Which is good if you are on it, and bad if it isn't working for you. Surprisingly he said the only thing that was showing some positive results in Pancreatic Cancer was 'Turmeric' (curcumin). I know we've discussed this on another thread, but thought I would mention it again as it was straight from the horses mouth as such. I'm going to get some, you know me - will try anything!

We had a chat about Tarceva (Erlotinib) - and he said unless you get the terrible rash, diarrhea and other pleasantries it is not working. If you do get these side effects, it will prolong life by 2 weeks. He said it wasn't worth the pain - the trade up fell short for what it offered in return.

He did mention that there are 3 drug companies currently working on a new drug that targetted insulin receptor cells, linked to Pancreatic Cancer, but it would be several years before any trials would be put forward for this.

All in all the meeting went well, we even cracked some jokes etc. I had the impression he would offer me anything to help with this, if there was anything available and that he is frustrated that current trials and research seem to have come to a dead end. He mentioned that ESPAC were currently trialling Gemcitabine vs Gem/Cap - which he feels is a waste of time as hospitals are already using the Gem/Cap regime and have been for a while.

He wants me to return to chemo, embarking on 3 months on, 3 months off - from now until I can't do it anymore..... :S

On another note - I have done 1 article for the Western Mail newspaper on Pancreatic Cancer. It went well, they mispelled 'serous' cyst by calling it 'serious' - which is understandable - the rest of the article was ok and the family photo came out nice.

I'm also doing an article for Grazia magazine. They interviewed me over the phone a week ago, then sent me a proof of the article. It was very dramatic and 'sensationalised' - and written as if in my own words.....I've ended up re-writing a lot of it as I found it too theatrical, and hope they will take the changes onboard. It kind of scared me a bit to be honest, it makes you realise how things can be worded so differently from the same item of information. I did leave some ncessary flim-flam to get the punters wanting to buy it - and hopefully not insult the author too much by changing everything she had written.

I've also been contacted by another journalist wanting my story, who has promised it will be in 'my own words'. My husband is feeling a tad reluctant due to the one we've just read from Grazia. Not sure what to do as I want to do my best for the awareness week - even though I am not out there raising money, hopefully I am raising interest/awareness in it.

Juliana

Hiya,

Well I had the journalist ring up today (Grazia) concerned she had upset me with the article. We had a nice chat and I tried to explain how strange it is to read a story about yourself in 'magazine speak' as such - and what may not seem sensational to her, does to someone like me - who has never done anything like this before

She was very good and said that she'd taken the changes onboard and it had been sent for final editing by Grazia themselves, but I will get to see the final draft before it's published. I can't ask for more than that. She did ask if I would do a similar story for the Express, more medical orientated with information from specialists too and I said I would discuss it with my husband later and see what he thought.

It must be difficult striking a balance I guess, or maybe I am just being too sensitive and picky!

*sigh*

Anyone fancy coming around and helping me with my ironing....?

Juliana

Hi Juliana

Eva is beautiful! is she settling down now?

Wow, you are brave - going national. I did a radio interview at the local BBC but I don't think I could have done anything on such a grand scale. I'm pleased you stuck up for yourself too because sensationalism doesn't give the story justice.

Kind regards

Nicki xx

Hi,

Someways it's easier doing the 'National' paper, as it feels 'further away' from us as a family and not as intimate as the local newspaper.

I think I'm passed the 'seeing it in print' jitters, it just feels a shame - you look at the photo of my family and we are all smiling, yet there I am - in the middle of them all and medically speaking I'm up sh*t creak without a paddle!

Feeling a bit down today as I've had an ache/pain in my back again and it can't be related to anything else but the cancer. I don't want to do chemo yet, and I'm desperately trying to decide whether to contact Dr. Gonzalez for information on what is available for me, or follow the Budwig diet. I feel like I should be doing something, just don't know what. I bought some Turmeric capsules yesterday and have started taking them, I know it takes a few weeks before your body starts to respond to any vitamins etc.

I've barely started my Christmas shopping, although I have started to make a list of ideas....but I've been so tired lately, too many late nights I think.

Going to head off to bed -

Juliana x

hi juliana, positive news for u (sorry computer still not working so using fone again), read your article on western mail website, well done, so when will the grazia one b out? And i'm interested in this tumeric but nervous at the same time of anything not prescribed by the doctor, especially since they said blue can't have echineaca (mac nurse said she thought it is because it may give a false reading on ca19-9 test)

hi juliana, another quickie, just wondering what meeting your doctor went to in barcelona? Only cos i know a Dr Davide Melisi from italy is doing some research and spoke at a conference in berlin in september and i've been trying to find out more with not a lot of success

Hi Clair and Juliana

There was a huge conference in Berlin around September time and, as Clair said, David Melisi gave a presentation there.

David Melisi was in Houston, US for a period of about four years before returning to Italy last month. He is currently working at ISTITUTO NAZIONALE PER LO STUDIO E LA CURA DEI TUMORI – FONDAZIONE “GIOVANNI PASCALE”, Via Mariano Semola - 80131 Napoli

Tel. 081/5903616 Fax 081/5903832.

If you'd like to know more about Dr Melisi's work, most of the websites are in Italian but dear ole Goggle has provided a translation for some of them, such as this one: http://www.translate.google.co.uk/translate?hl=en&sl=it&tl=en&u=http%3A%2F%2Fwww.vip.it%2F%3Fs%3DDavide%2BMelisi%2B

If you get a white box at top left of page, scroll down and then back up again to clear it.

The website for the Fondazione Pascale doesn't translate very well but here's the address: http://www.translate.google.com/translate?hl=en&sl=it&tl=en&u=http%3A%2F%2Fwww.fondazionepascale.it%2F or, if you're lucky enough to read Italian www.fondazionepascale.it

Hope that helps

Nicki x

Hi Claire,

Not sure what the meeting in Barcelona was called - I think it was the ESMO conference, but he goes every year apparently. There was a Dr. from Canada giving a lecture there, I can't remember his name but he was one that pioneered Tarceva (Erlotinib) a couple of years ago, although apparently they are no longer promoting it as the miracle drug due to it only giving you an extra 2 weeks for a whole lot of nastiness. My oncologist spoke of him as the 'top guy for upper gi & pancreatic' research.

I can understand your concern about the Tumeric, especially as Blue wasn't allowed Echineaca (although a few sites seem to suggest not taking it, as it interferes with the immune system) - all I can say is that my oncologist promoted it as one of the only things showing promise at the moment. Everything I have read on it so far seem to be positive, alot of the info stems from clinical tests and it's not a new thing, they have been promoting this for a few years now. My oncologist did advise that because it cannot be 'patented' - there is no profit in it, so it's not being picked up by the big drug companies as there is no return on it for them. Apparently you can take up to 8gms a day - all I was advised is not to take too much as it may turn my skin yellow/orange (fake tan here I come!).

I think there is always a doubt when trying these things, plus the added worry where they say the supplements can help the cancer cells recover and in some cases (Beta carotene /Vitamin A) encourage it to grow (lung cancer). This worries me too, I'm torn between trying to increase my own natural cancer fighting ability or relying on toxic substances to kill it/slow it - but damaging and weakening my whole body in the process. Think of all we hear about the new 'immunotherapy' trials and drugs, this type of treatment is designed to boost your natural immune system into killing the cancer, but by using concentrate drugs, high dose like Interferon.

And as for Eva (sorry I forgot to reply Nicki) - she is a little minx! Full of mischief and totally wearing me out.....she is lovely......when she is asleep....a bit like my kids really!

Juliana

Hi everyone,

Just a short one today - a question really.

During my chemo treatment I was advised to look after my teeth and brush after every meal, take a brush out with me etc incase I ate something whilst out. Use a soft toothbrush only etc etc....I started off like that, but as I did not experience sore mouth/gums I went back to my twice a day normal electric toothbrush routine. However.....this past 1.5yrs I have had 3 fillings fall out.....which I find odd as for years and years my teeth have been fine and not required any work on them (especially since using electric toothbrush). I was wondering if any of your partners have experienced issues with fillings since chemo treatment?

On a more serious note.....has anyone finished their Christmas shopping....?

I have not, unfortunately.

I am considering taking my Mother to see the Nutcracker ballet in Cardiff.....really struggling to think of something innovative to get her, she doesn't want anything to keep/display/wear and says she would be happy with bubble bath and body cream.....doh.

Juliana

Juliana

Blue had a tooth break the first week of chemo, it was sod's law, after being resistant to food and the steroids finally kicking in after 5 days, his tooth broke whilst eating a crumpet!!

We were told no dental treatment and no mouthwashes, just a salt water mouthwash. His teeth weren't great either beforehand, they looked lovely but that was because over the years he's had a lot of work done on them (had a drug as a toddler for pneumonia that messed up his enamel), but fingers crossed the soft brushing and salt water has kept everything at bay.

Yes we've finished our Christmas shopping, only yesterday mind you, braved Cambridge....I think Blue is beginning to understand my sentiment, "I love shopping, I just don't like other people shopping when I am" haha.

The Nutcracker sounds nice as a gift for your Mum, but if she wants smellies, Holland and Barrett are now doing Manuka Honey bodycare, we bought a foot and heal cream today to try and help Blue's heels (cracked and blistered from the splints) and it smells lovely.

We had our 2nd wedding anniversary yesterday. Blue loved the canvas print I got him of one of our wedding photos and although not cotton, I loved the bangle with a lovely green stone he got me (I'm a bit green mental, we already have 2 green rooms and he's just put his foot down about having the hallway another shade of green haha)

Hope you are well. I'll update my thread about Blue.

Clair

Hi Juliana

how are you? All set for Christmas? No chocolate decorations on the tree I hope with Eva around!!

I hope you are well.

Clair

Hi Claire,

No....not all set for Christmas....but have finished getting the kids stuff - which is the most important thing (just hope the Royal Mail deliver it before d-day!).

I'm almost done - just some bits and bobs, finishing off prezzies. I told my hubby I didn't want anything as we'd spent on getting the dog - he's told me he doesn't want anything, but I've bought him a couple of things to open on the day - small stuff, but more importantly.....a terry's chocolate orange

Haven't decided what I am cooking exactly for Christmas day, think I'm having my parents and uncle around again - and was hoping to get an organic turkey but there aren't many around and those that were.....cost about £60, which I cannot afford. So, I may get a turkey crown for the family and look for a small organic chicken or duck part for me....I haven't eaten meat for ages and I know the Budwig has allowed some 'natural' (organic) meat every now and again, so Christmas day will be my treat.

The tree is up, and looking beautiful.....yes I do have choccies on it.....and today I caught Eva on the arm of the settee trying to sniff them out. Although she's the least of my worries.....it's my Dad I have to watch out for. One year he ate all the chocolates on the tree and re-wrapped tissue paper in the shape of the choccie.....so when me and my brother were 'allowed' to eat them on Christmas day.....they were all empty! (He did the same with some of my Easter Eggs one year....opened them up, ate the inside and the back, just leaving the front intact so it looked like a whole egg... )

Had my son's 2nd birthday party yesterday - it was hectic, all the family there, lots of food (mostly stuff I couldn't eat!) and the kids on hyper mode but loving it.....it was fun, but exhausting.

I'm doing ok - have got a bit of a bad tummy, since Saturday - which has kept me awake or just not in deep sleep for 3 nights now, so knackered. Not sure what it is - I'm bloated and feel 8months preggers but still going to the loo etc....my stomach is quite swollen and tender - but I still have my appetite (the day I lose that is the day I meet my maker!). Will see how it goes, but family want me to contact my specialist....

Anyway, good luck with your CT scan tomorrow - I know you won't get the results there and then, but I hope it brings you good news when you do get the review.

Kind regards,

Juliana

Aah, Christmas...very happy to see it given that we thought Trevor had weeks. Spent 8 hours in Kingston trying to get presents - if I didn't think so much it would be easy, but I can't buy presents like that. We are doing something that we have always wanted to do and that is spend it in a family-friendly, action-packed hotel - well it's only got 23 rooms. Never been able to afford it before, can't really now but we have already cancelled one holiday this year and decided that if we were ever going to do it, this was the year. The kids are overly excited and it will be nice for all of us to relax. Only odd thing was getting a doctor's note for Trevor to be able to have a massage - sometimes the big 'C' makes you feel very much persona non grata.

If I don't manage to get back on line, have a great Christmas everybody.

L x