1 (edited by Puggle Sat, 08 Sep 2007 19:38:25)

Topic: Partner recently diagnosed with cc - Western australia

Hi,

Thank you thank you thank you to all of those who've contributed, and continue to contribute, to this wonderful site - i have been trawling the internet for weeks and it is by far one of the most valuable  resources I have found.   
Three weeks ago my 47 year old partner was diagnosed with cc via biopsy of liver cells.  A cat scan has revealed 2 large tumours on the liver, 2 enlarged lymph nodes either side of the pancreas and possible adrenal gland involvement, although Drs have not located a primary tumour (an endoscopy revealed nothing apart from the lymph swelling).  Although he has just had his first dose of an initial six week round of chemo  (Gemcitabine), we have been told that this would only extend his life by a couple of months, and eventually the cancer will become resistant IF it works at all, but that without this treatment he would deteriorate rapidly.  Obviously we are devastated and shocked by this news.  Despite the fact his immune function, liver function and bloods all came up as normal, Drs have said this makes no real difference to the prognosis.  We are at a loss as to what to do in the face of this terrible diagnosis, as we are not willing to just say "right, well that's it then" and give up, but every time we find something that looks like it'd be worth trying, there's so much conflicting evidence! We have changed to pretty much a vegan diet (with the exception of bio yoghurt, for the beneficial bacteria) with loads of fruit, veggies and juices, exercise regularly, practice meditation and use positive imagery exercises and are desperately trying to decide on a suitable course of supplementation (for either during or after chemo).  Fish oil looks good! ANY advice would be deeply appreciated.
My thoughts are with you all,

Emma.

p.s Have any of you ever heard of the 'moss' reports on cancer treatment or AV 1 chinese herbal medicine cancer treatment?

Re: Partner recently diagnosed with cc - Western australia

Hi Emma, so sorry to hear of your partners diagnosis. I'm afraid Im fairly new to this wonderful site also and so maybe can't be of as much use to you as some of the wonderful senior members. My Gorgeous Sister was diagnosed 3 months ago after a minor op to remove gall stones.  The Gall bladder sent to lab was found to contain cancer cells even though nothing had shown up on several deep scans. She was advised to undergo re-section surgery as this provides the best chance of a 'cure'. As  advised by many here - do get a second opinion as to whether surgery could be an option. /as it turned out our Surgeon could not gain clear margins and the cancer was found to have met to abdomen and lymph nodes. My Gail had her first chemo (Gemcitabine) last Tuesday and did fine until today (6 days later) when she has been Nauseaous and feeling very poorly. How has your partner tolerated the Chemo? Has he had side effects at all? One thing our Research Nurse banned was live yoghurt by the way, as even the good bacteria can cause illness during Chemo. The best advice I can give to you both would be to do a search here of Jeff and Peters posts. Both are amazing survivors of this terrible illness and were given - a long time ago - the standard '6 months'.  There is hope for us all. Fight til you can fight no more and then some!. Much Love to you and yours. Chris

Re: Partner recently diagnosed with cc - Western australia

I'm sorry I'm not responding to Puggle's post because I don't have any intelligent answers! But Chris, I wanted to ask you about the live yogurt thing, as I just suggested to someone on this board that they try yogurt!!! It was suggested for my mother and it helped her eat something and helped her nausea, and since it was recommended by a nutritionist where she was getting chemo, I thought yogurt was safe. Was I given wrong information? Activia was the brand that was recommended - is it somehow different? I really hope I'm not giving horrible advice!!
-Joyce

Re: Partner recently diagnosed with cc - Western australia

Thank you so much for your response and I am so sorry to hear about your sister - I hope that, nausea aside, she does well on this course of chemo.  My partner has also been very nauseous, his sense of smell has been dramatically altered and has been feeling very low, but  we  are doing the very best we can to keep his fighting spirit up.   He has been prescribed several anti nausea drugs by his oncologist - For two days after the chemo he takes dexamethasone and granisetron (kytril), and then on a regular basis for the rest of the week (up to every six hours), metoclopramide and lorazepam.  I don't know if these specific drugs would be suitable for your sister, but if you have not already disciussed anti nausea medication with the doctor it might be an option worth exploring.  It is also supposed to be useful to sip ginger tea and to eat six small meals a day instead of attempting three main ones.  If it is of any consolation we have read alot of good things about gemcitobene.

We are going to see a naturopath this week so it will be interesting to see what she suggests ....


Positive visualisation imagery is something we've read alot about - I don't know if you feel it would work for your sister, but it might be worth a try to make this whole experience more bearable.   We've read several books published by cancer survivors and meditation and positive visualisation come up alot.  As do the importance of good nutrition and supplementation via a qualified professional i.e. naturopath/nutritionist.

I just hope that some of this is of use.  It is so hard to know what to say because this can effect every individual so differently.  There also seems to be a distinct lack of information on Cholangeo specifically. Like jmoneypenny I have never heard that yoghurt is bad and my partner has been having natural bio - yoghurt daily in smoothies, and these are great for when he doesn't feel like eating much - I have no idea if this is the right thing to do!

Much love and luck to you and your sister, and we will post anything else we find of use!

Emma.