jules
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kate & Nancy
thanks for your posts. The abdomen pain turned out to be a hernia. We are currently investigating surgical options, however it is more likely that my dad will just have a surgical belt – surgery would be difficult due to the previous 2 ops. in addition my dad is reluctant to go back into hospital now, surgery carries risk – eg perforation of the bowel etc – difficulties with wound healing and delay in chemo etc etc..
now that my dad has a surgical belt he is feeling alot better and enjoying the nice weather. thanks for your messages of support.
Jules
caroline
I have been thinking of you, I am glad that you are tolerating the gemcitabine well. It sounds as though you have a good oncologist who is open to exploring new treatments, i think that this is half the battle – to find a doc who is willing to go for aggressive treatments – so many of them are dismissive of cc patients (we have come across good, bad and indifferent).
i have not heard from patricia recently – she very kindly emailed me some info just after she lost her husband, i do think of her often. I have not heard from susan either (i think thats who you mean – her mum is fighting cc) – she has not posted on the site for a while..
my dad is doing really well, other then a recent irritation of a hernia which has caused him a bit of discomfort. saw a surgeon who has reccommended a surgical belt as it would be difficult to operate after 2 major abdominal ops – other then that he is doing fine – he has a really good appetite, is active (goes out for long walks every day). The last scan said the tumors were not growing, so as long as the chemo is halting the disease i think we will stick with it – my dad has an option of a clinical trial at a later stage.
avastin is a great drug – has shown activity against every other type of cancer and is well worth exploring and going for – the only reason they say it is contraversial is because there is no evidence of it working against cc (this shouldn’t be a reason for not giving it – they know it works on every other type of cancer – not enough research has gone into cc)
the drug in the trial that my dad has been offered is “the next avastin” – AZT71, i think it was called..the oncologist we saw about it said that it was showing “miraculous results”. I don’t know that much about davant – certainly sounds worth looking into – seems to be a lot on this site just lately about it…
oxyplatin is a 3rd generation platinum drug – a friend of mine had it with gemcitabine for pancreatic 4 yrs ago and is still alive and kicking (at the time he was given 3 months) – another good drug.
everybody here is world cup/football mad at the moment (apart from me) – at least it is a distraction for my dad..
thinking of you
– jules
hopeful,
this is an unusual case – I’m sorry I do not have any info/experience that i can share with you, I hope that your father in law responds well to treatment, best wishes – jules
thanks for the info on davant, this sounds very exciting – does anybody know if this type of therapy is suitable/effective for use against mets of cc? (nodules in lung and enlarged lymph nodes)
thanks, jules
kate,
glad to hear the surgery went well. Did the surgeon tell you if he got clear margins? – my dad did not have chemo post op initially as the surgeon did not reccommend it – i advise you to get on oncologists opinion on this – they are bound to conflict, my dad has suffered a recurrance 5 months post op – we really were hoping for longer – i urge you to go for chemo – i wish now that my dad had.
wishing your mum a speedy recovery. Best wishes, jules
caroline,
how are you getting on with gemcitabine – my dad is on gemcitabine and carboplatin – his oncologist has said that the tumors have not grown. The chemo wipes him out quite a bit – he has been given steroids to take for a few days post chemo, they said that the steroids taken with the anti nausea drugs works more effectively. – they gave him a real high and as my dad was not getting any nausea he stopped taking them.
What was the name of the ‘contraversial’ drug that you metioned? – are you going to add another drug in with the gemcitabine?
jules
kate,
i agree with caroline, fluid build up is v common post op – my dad had lots of problems with it post resection. he had fluid in the pleural cavity (in the space around the lung) and needed a chest drain and aspiration on the first op, post op second time round he had alot of probs with the wound healing and the fluid was pouring out – in the end they gave him a vac pack whcich basically is attached to the wound site – it is a machine which my dad carried around with him which sucked the fluid out into removable cannisters. They told us that the surgery involves alot of distrubance to the organs in the abdomen and fluid build up is a normal reaction to this – the prob with fluid build up is that it creates a warm moist atmosphere for bugs to grow – at the time my dad was taking very strong broad spectrum antibiotics.
hope this helps and that your mum makes a speedy recovery – is she having chemo post op?
jules
hopeful,
I am sorry to hear about your father in law. Cholangio does not usually metastasise to the bones – if it spreads it usually goes to the lungs or abdomen – are you sure this is cholangio? – cholangio starts in the bile duct and initially spreads to the liver and most people are not diagnosed until it causes obstruction in the ducts and jaundice. If your father in laws prostate cancer has spread then they should treat it as prostate (the primary) – the regimes/drugs will be different – although v rarely somebody may be unlucky enough to suffer 2 different primary cancers this is unliikely. Hope this helps. good luck, jules
caroline,
i am so sorry that sorafenib has not helped. i was hoping that it would help you. are you going to try chemo now?
my dad is now on gemcitabine and carboplatin and seems to be tolerating it well – no nausea, just a bit tired the day after the chemo. we also have other options – my dad has been offered to take part in a trial at the royal marsden – depending on how successful the chemo is..
You have been so positive and brave throughout this – there are options – we have to keep fighting to exterminate those turds!
jules
kate,
post op recovery varies – this is major surgery – most important thing is to try to get up as soon as poss after surgery and get moving, appetite takes a while to come back – for my dad it took about 2-3 wks to regain appetite – mobility took him about 6 wks to get back to normal, it seems slow at first but you do get there, I advise an epidural rather then a pca (pt controlled analgesia) post op – my dad had a really hard time following the first op (with morphine) with the second he was fine (epidural) – the second op was done at a bupa hospital here in the UK and the care was excellent, the first op was in a private ward in an NHS hospital (this set up does not work) and the care was lousy. I just wish that we had met prof lodge (the second surgeon) first time around – he is very good. is your mum normally fit? – when is she scheduled to have surgery? – we are also in west sussex, are you in greece with your mum now?
jules
hi kate
so sorry to hear about your mum – my Dad (61) was diagnosed with cc july 05 – had a resection and now has recurrance and is having chemo, we also have some other options standing by and are determined to beat this.
It must be hard for you with your mum in greece, if there is any advice I would give you at this stage it would be to make sure that your mum has a surgeon who has operated on cc patients before and has plenty of experience, it is very difficult surgery and as cc is so rare it is a specialty. My Dad had 2 ops – first at hammersmith – the surgeon said he couldn’t remove tumor, the second op cancer was all removed..(second time around we had someone very highly reccomended) – surgery is the only curative option with this disease.
good luck, jules
dear patricia,
I am so shocked and upset to read your posting, all the way along I have felt that you have been there – to share information, frustrations and the pain. I am deeply saddened by this news, I am so sorry for your loss, you worked so hard in supporting your husband through this, I have admired your strength and courage throughout, I am so sorry that you are in pain now, it is so unfair to lose someone so special in this way.
of course I never met or spoke to your husband, but from the way in which you described him I always felt as though I could imagine the sort of man he was. A good friend of mine once said to me that in this life there are two kinds of people – drains or radiators – the former referring to the kind of people who take from you with little thought or recognition of your needs, and those who radiate warmth and kindness to whomever they meet.. I think that from what you have told me your husband fell into the latter category.. in additiion, I just want to say that I admired your husband’s bravery throughout his short illness, I sense that it was a comfort that he did not suffer at the end, that his death was peaceful and that he was surrounded by those people whom he loved and cared so much for and that he was comfortable and in his own home.
Patricia, I will be thinking of you now, your life has been dominated for so long by this dreadful disease, however I hope you can look back over the all the treasured memories that you must have, years of happiness and all the events of family life that you shared with you husband..your husband’s illness was so short in comparison, no cancer can ever take those precious memories away from you – they are yours forever…
with love, Jules
good to hear from you caroline – i am hoping that the sorafenib is successful – when do you have your ct?
patricia, susan – thinking of you both..
jules
thanks alot stacie – very helpful, we are going for a second opinion on weds, i wanted to discuss avastin with the oncologist..you’ve posted this at just the right time!
jules
hi – i agree with you about the NHS – lets face it, the NHS is beyond repair – when my dad had his second op he was in a bupa hospital which was lovely, the nurses were so caring (unlike the aggressive ones you come across in the NHS) – unfortuantly my dad is not insured so he had to use his savings for the op – i know that he is petrified of having to go into another NHS hospital ever – i hope he never has to. I think that if you have to go into one then you need a relative with you fighting your corner because abuse and neglect is so commonplace. and as for the food…don’t even start me on that!
susan and patricia i am so sorry that you are having to deal with this dreadful disease and watch your loved ones battle it – it really is the pits. Just venting your feelings on this board helps, i find, nobody else really understands how it feels. my dad starts his chemo on tuesday, on weds we go to the marsden to see prof cunningham, although treatment for this disease is undeveloped (no money for the drug companies in it – too few people effected) – i think my dad should try some of the drugs being used on pancreatic (it is the same ‘family’) and ‘fast forward’ through the process, after all they always seem to end up using drugs proven on the other cancers, so why not just use the most effective drugs on the other cancers now? – i want to ask prof cunningham whether the tumor can be tested to see if it is her2 positive – if so then why not use herceptin? – i also want to ask him about avastin which seems to be used by the people on this board in the states (they are ahead of us on the cancer front) – i’ll let you know how i get on..
i hope you both have a better week, jules
