geoff
Forum Replies Created
-
Posts
-
Alison
My surgery was done by Prof Peter Lodge in Leeds. I can’t speak highly enough of him. My tumour was very advanced and although Prof Lodge achieved clear margins I now have metatistic disease which is being treated by chemo.
Side effects with the Gemcarbo regime aren’t too bad. Main problem has been chemo-induced anemia which has required a couple of blood transfusions. In addition I am usually very tired the day after chemo. I have a CT scan in a few days and will find out whether the chemo is being effective.
Good luck
Geoff
Peter
Very interesting. Could you tell me where the clinical trial will be taking place ? Any any other information about it eg is it a stage 1 or stage 2 trial ?
Geoff
Alison
I am a CC sufferer based in UK. From my own experience of this disease I would comment:
(1) The ABC01 trial in UK compared Gemcitabine alone vs Gemcitabine with Cisplatin (Gemcis). The trial is still running but initial results show that Gemcis gives signifacantly better response rate than Gemcitabine alone. I am currently on Gemcitabine with Carboplatin (GemCarbo) – carboplatin is a 2nd genration of Cisplatin (less side effects) – and this is under the NHS. Suggest you ask Jon’s oncologist about this and if necessay find another oncologist.
(2) Some surgeons are reluctant to operate but it’s the only route to extended survival. Depending of course on how advanced Jon’s tumour is you can find aggressive surgeons who will operate. I’ve been through this and my tumour was removed last October.
Good luck
Geoff
Dear Hilde, Stina, Ida
I’m a CC sufferer based in the UK. I have spoken to several oncologists regarding Avastin and it is not being given anywhere in UK for CC. One of the leading cancer hospitals in UK has started a stage 2 trial using an Astrazenica drug, referred to as AZ2171, which was described to me as “a 2nd generation Avastin” – I understand that this drug is taken in oral form and is given alone ie not in conjunction with chemo. Apparently the trial is targetted at CC patients who have failed to respond to chemo. If my current chemo is found to be ineffective it’s being suggested that I go onto this trial, obviously at that stage I will find out more.
Hope this helps
Geoff
ranner
Just seen your post dated 15 June re your dad. Having personally suffered jaundice I can sympathise with how your dad is feeling but just letting it get worse is giving up on this desease – it won’t fix itself. I had 2 stents fitted using ercp I agree that the procedure is extremely uncomfortable and wearing, also for me they did not work. What eventually worked for me was (a) fitting an external drain to get rid of the jaundice and (b) a month later fitting an internal metal stent to get rid of the external drain – both these procedures were done using keyhole surgery taking only 30 minutes each and with local aneasthetic, and they were very comfortable procedures – far better than ercp. Maybe your dad could consider this option ?
Geoff
Kathy
I live in UK and can buy various Omega-3 products here but can you advise what I should be looking for ? I do eat fish but maybe not as frequent as I should, I’m quite happy to take a fish-derived product (I hardly ever belch). But what type of product is best eg capsules, cod liver oil in liquid form, etc etc ? And what doseage ?
Geoff
hi jberg
I also had liver resection in October 2005 and abdominal discomfort is my main problem at the present time. My doctor said that my discomfort is related to the scar tissue at the site of my abdomen incision – I had a lot of trouble with this healing up, it took 3 months before I was able to dispense with dressings. I’m not so sure that’s the whole problem, sometimes it feels like the discomfort is internal however to be honest it’s not really possible for me to identify the source.
Geoff
Hi ukmember
Do you have any references to support the usefulness of the food supplements ?
Could I ask where (in the UK I assume) you get AHCC ?
On a more general note, I recently asked the Bristol Centre for nutritional advice and one of the items in the leaflet they sent was to minimise dairy produce. This seems odd to me since at the hospital where I had my resection the dietician encouraged me to drink full fat milk and to eat cheese and I’ve been doing that ever since (nearly 6 months). Anyway I emailed the Bristol Centre asking for supportive evidence for their nutrition and supplements advice and what they sent me (called “Supportive Research for the Bristol Approach”) said “There is unclear evidence at present whether the consumption of dairy products leads to a higher risk of cancer; however, there does seem to be a risk for hormone related cancers”. So now I’m confused – if the evidence is unclear, why do they say we should minimise dairy produce?
Geoff
Hi Caroline
Good luck with the Sorafenib, I do hope that it works. The 78% success rate quoted in your other post is very impressive, do you have any details regarding the trial from which that figure derived ? – is there any info in the public domain ? The trial which you are now on – is that a Phase II or Phase III trial ? Anyway please keep us informed about your progress, it sounds like a very interesting drug. Pleae also let us know about any side effects.
By the way, what are “hairballs” (sorry to ask a dumb question) ? You say that these weren’t detectable before/during surgery, does that mean they grew during the 3 months after resection ?
Best wishes
Geoff
Peter
Yes I’d already seen your History thread and again I take great encouragement to hear from someone like you who is in the 50% who survive beyond the 1-2 year median. I note that you didn’t have chemotherapy, as you say it’s a very personal decision.
As an engineer I’m used to making decisions based upon the best set of facts I can get my hands on, recognising that I’ll never have the complete story. So ideally I’d like to make my decision based upon whatever success-rate statistics are available. Unfortunately is appears that very little is available other than for non-resectable tumours.
Geoff
Dette1957
Good to hear from someone who is maintaing a full and active life after resection. It’s only just in the last month or so that my own mobility and feeling of well-being has seriously improved. Could I ask:
(1) how long after surgery did your chemo start ?
(2) do you feel that the chemo hindered/delayed your return to a full and active life?
(3) has your weight returned to normal yet and if so how long did that take ?Best wishes for continued freedom from this disease.
Geoff (whose next CT scan is in 4 weeks)
