jules
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leigh,
i am sorry to hear about your brother, I would reccomend that you seek a second opinion on the surgical front as surgery is the only real chance of cure with this beast. my dad has had 2 ops – the first op we were told tumor could not be removed as wrapped around artery – second surgeon removed tumor “it peeled away easily from the artery” – the second surgeon is prof peter lodge based in the UK (his contact details are on this site) he operates aggressively on these tumors and takes on cases deemed hopeless elsewhere.
if surgery not an option then keep trying with the chemo, i have come across people on this site and on other sites who have been held ‘stable’ on chemo for many years..
drs will give you all these gloomy statistics, you must remember that everyone is individual and will fight in different ways – mark and valerie on this site are taking oxylplatin and doing ok – someone i know suffered pancreatic 4 yrs ago (given 3 months) had gemcitabine and oxylplatin plus radiation and is still alive and kicking 4 yrs later – with the right chemo you could shrink this thing and maybe then go for surgery if not now.
best of luck, jules
patricia,
I was very upset to read your posting, i am so sorry that you and M have had such a dreadful week. my dad would empathise with M being reluctant to go into hospital. I think the thought of going into another NHS hospital terrifys my dad. I can understand what a relief it was for you both to meet with someone who can help and you feel is on your side – i agree, so many drs seem unable to listen. they tell you a load of brutal statistics and just leave you reeling and in shock – its like “this is how it is – go away and get your affairs in order” ..”next please”.. no compassion, no humanity. It is a great comfort and can really lift you when you find someone helpful.
Patricia, i hope that you have some help and support right now, I think that your husband has been very brave and i admire his determination in the sense that he has always been clear in what he wants and what he doesn’t want and not allowed himself to be pushed around, sucked into the system and onto the ‘standard experimental treatment’
As for my dad – we have done our research and I feel that the drugs my dad is being offered should help – chemo starts on tuesday, we have a second opinion with prof cunningham at the marsden on weds, my dad is also starting AHCC. the recurrance was very disappointing so soon after surgery, the battle continues.
hoping that you have a better week next week, jules
thanks stacie, thats great, would like to hear from tricia.. i think my dad needs the avastin, he will have to pay for it privately here, but i think it will be worth it.
jules
david,
your dad’s appetite will come back in time, my dad(61) had a resection 5 months ago, it took him a while to get his appetite back, he is now doing fine, enjoying food and is putting on weight. It takes time. Also my Dad took a while to get his mobility back, initially post op he could only walk down the hall, to the nurses office and back to his room, now he is able to enjoy a walk on the South Downs (he lives in sussex in the uk) – he still has some post op discomfort but is a whole lot better then before the op. good luck, jules
caroline,
the celtic band sounds great! – you are not letting this stop you from living – it is hard to not let it take over, i am hoping that the trial goes well for you, take care, jules
patricia, yes i did mean the centre in bristol, thankyou for the link, my dad is thinking of going there.
my dad is doing ok, however is hampered by a persistant cough that induces coughing fits sometimes when he tries to talk and is really getting him down. we have contacted drs about it, everyone has said that it is a chest infection, my dad has recently completed a course of anti biotics however the cough persists.
the oncologist that he saw is dr andrew webb based in brighton, prof cunningham referred my dad to him. dr webb was dismissive of chemo, he said that it has a 10-15% likelyhood of having any effect on cc, my dad is going to see another oncologist this week at UCL (not sure of the name – i will check and let you know) who specialises in cc, dr webb said that it was unlikely that he could give him any info in addition to the advice he gave however we feel that it is well worth getting second opinions.
as far as chemo goes – nothing unexpected in the advice, i realise that chemo regimes for cc are undeveloped. my dad has done some reading on the subject – the median survival for post resection patients is about 2yrs (for extra hepatic cc) – as prof lodge told him, there is a 50% chance of long term survival and 50% chance of surviving less than the 2 yrs. (i think i have this right). my dad is going to work on making sure that he is in the former group.
‘statistics’ – don’t you hate them! – i know i do.
i am hoping your husband has a favourable response to the PDT and is starting to turn a corner with this ‘bloody disease’ (as my dad refers to it).
Juliet
patricia,
i am pleased to hear that the PDT went well. I have been thinking of you both. my dad is very interested in the cancer centre in wales, could you give me some contact info?
thanks, jules
patricia,
i have read alot of very encouraging reports of PDT, it certainly looks like a very promising treatment – good luck, jules
hi caroline,
your postings make me smile and cheer up a wet day! – it is very kind of you to think of my dad when you are going through this too.
My Dad met with the oncologist today. The oncologist was very negative about chemo – he told my dad that it is not effective on ‘microscopic cells’ (how do they know this when they can’t even be seen under the microscope?!) he also said that chemo for cc does not have a very good success rate, (he was referring to gemcitabine and cisplatin) and that he did not know of any trials worldwide that had evaluated the effectiveness of chemo post resection, he said that the surgeon was only able to achieve 1mm margins, he also said that chemo would ‘wipe out’ the next year for my Dad with no guarantees that it could prolong his life and that he needed to decide whether he wanted quality of life v quantity.. he also acknowledged that if the cancer did return in, say, one yrs time, my Dad could “kick himself” for not having chemo… so, alot to think about, he also gave my Dad contact details for another oncologist in London who specialises only in cc. My Dad has said that he needs time to think it all over. I have told him that it is a individual and personal decision, I hope he does go to see the other specialist in london though as he may have some more encouraging information.
Hope you are ok, Jules
caroline,
england is wet and miserable (including the people!) – i think you have got a romantic view of the place! i spent all last summer in london in hospital with my dad, i was trying to get across london in a cab the day the bombs went off and it was a nightmare – quite surreal, yet all i could think about is that i had to get to the hospital to be with my dad.. in fact we are coming to florida in july to disneyland, can’t wait! – i hope that my dad feels up to it, i think he will – he’s putting on weight and doing really well, more like his old self every day, so miracles do happen, last year we were told that my dad would probably not see christmas..and then we got a second opinion which has just turned things around totally. (initially my dad was told that his tumor was inoperable and then subsequently as you know he had a resection) i really hope that things go well for you, i am hearing of more and more people beating this disease each day.
jules
caroline, i hope that you get into the trial, has sorafenib given good results in the trial so far? my dad was offered to take part in a trial here – gemcitabine and cisplatin, he has also been offered to take part in another trial for bilcap (I think this is the oral tablet for of 5fu). so far he has not made his mind up what to do, it is difficult as his surgeon did not reccomend chemo and i think that my dad is reluctant as the benefits of chemo for cc are unproven, having said that i know someone who has taken gemcitabine and cisplatin which has shrunk his tumor enough so that he is soon going to be able to have a resection – it just seems so individual.
best wishes,
julescaroline,
thanks for your reply – i think my dad did have fluid build up, he was not drained in one go, instead he had a ‘vac’ suction machine attached to the wound site which sucked out the excess fluid into a cannister that had to be changed 1-2 times per day. have you had chemo post op? my dad feels very tired still and he finds this quite debilitating, other then that he is putting weight on and his appetite is very good.
jules
patricia, my dad is doing okay apart from quite severe abdominal discomfort – he cannot sit/stand for long and is only really comfortable lying flat, he is going to see his surgeon soon, he thinks it could be due to ‘scarring’ (he had problems with the wound healing). he is also due to see an oncologist on friday to discuss chemo options. the problem with his lungs turned out to be a chest infection (although quite a nasty one) so we were really relieved.. getting away has done him good, especially being somewhere warm, after all him and my mum have gone through a break was long overdue. I just hope that the PDT and stenting helps to make your husband more comfortable, it should do – my dad had a metal stent and it relieved all his symptoms at the time (jandice,itching etc). – we carry on, not knowing what this beast is going to throw at us next, just hoping i suppose for some respite in between.
jules
patricia, i think the bristol centre sounds like a wonderful place..i do not dismiss alternative healing methods at all, i can understand that at a time like this it must be so nice to be in such a place of calm and comfort.
i think it is so common for a cancer patient to feel a loss of control, your husband is taking a degree of control over his body and what happens to him and i can appreciate why he wants to go down this path. Maybe a combination of orthodox treatment with alternative healing methods is the best way forward.. many people believe so. I hope that you have a better experience with the PDT this time, hopefully going private your husband will be cared for in a more understanding environment, i certainly hope so.
very best wishes, jules
good nutrition is vital when trying to fight this disease, i would stick to organic if i were you and try to eat as much fresh fruit and veg – green veg eg broccoli is especially good at boosting immune system. i am not sure about sweets – my dad likes to suck boiled sweets, i had heard that cancer cells feed off sugar (isn’t this how pet scans work?) – however when i rang cancer bacup they said that this is a myth. also some evidence to show that eating a macrobiotic diet can shrink tumors, my dad was advised to eat high protein food and indulge it what ever took his fancy as long as you are sensible.
jules
