jules
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Sya
I am sorry to hear about your father in law, you have found the right site to get support and reliable information.
My Dad was diagnosed July 05 – hospitalised with jaundice too, they said they would not operate until biblirubin came down. It was a very frightening time. My Dad had an external drain as ERCP procedures to try to insert stents were unsuccessful. His bilirubin DID come down – quite rapidly to begin with and then fluctuated as it fell off further. My Dad in time did feel a bit better as the symptoms of jaundice resolved, he was then able to have surgery. Unfortuantly his first op was not a success, we sought a second opinion and the second surgeon was able to resect the tumor. The best advice I can give you is to FIND A GOOD SURGEON. You need to ask them how many resections like this they do on average per year. This is specialist surgery. We are in the UK, I am unable to recc. a surgeon in Malaysia, you need to do some research.
My Dad is still with us, he has suffered a recurrance following the surgery however the disease has gone dormant with a radical change of diet and a previous course of chemo. My dad now has a good quality of life. What I want to stress to you is that there is hope, things may look bleak now, this is all a shock to you and it is hard to see someone you care so much about in this situation. Al patients are individuals and some respond to treatment better then others. Surgery is a real chance of cure and you should research throughly the options. I believe that bdc is more common is Malaysia then in the west so you should be able to find a good surgeon.
Good luck, Jules
cps
chemo options in the uk are limited. Most oncologists here regard cc as a rare cancer and consider that chemo is ineffective – they will refer to the lack of clinical trial data.
We have seen a few oncs in the uk (my dad has cc) Prof Cunningham at the Marsden specialises in gastrointestinal cancers. You may want to consider a clinical trial – the ABC 02 trial offers gemcitabine OR gemcitabine and cisplatin, I believe they have about a 25% success rate (shrinkage of tumor and prolonging life expectancy). There is also the gemcap trial (gemcitabine and capcitabine) – I do not have any knowledge of outcomes here, there is also the XL119 trial in Leicester..
my Dad had gemcitabine and carboplatin (which is better tolerated the cisplatin) off trial which kept his disease stable however he was quite fatigued during the treatment. It also hammered his bone marrow and because his platelet levels dropped so much he is no longer able to have chemo, however he has changed his diet radically and his disease remains stable and he has a very good quality of life. I don’t want to put you off chemo – what works for one does not neccessary work for another – one thing that I have learnt since my Dad was diagnosed is to ignore gloomy statistics, patients are individuals and what works for one may not work for another.
alison,
I am sorry that your mother is experiencing pain. My Dad was on gemcitabine and carboplatin and did not suffer pain, only extreme fatigue the day after chemo, however steriods help with this although he used to feel lousy ‘coming down’ off the steroids. Platin drugs are hard on the bone marrow, although have in general been effective for many patients with cc. Cisplatin is a platin chemo 1st generation and quite harsh, carboplatin is better tolerated (2nd generation) and does the same job, it is newer then cisplatin and oxylplatin is 3rd generation. Maybe your mum would be better off with a newer platin drug that is not so harsh? – you should discuss this with her oncologist.
Good luck, Jules
Alison and Mike
I am sorry to hear about your mum. Where are you? – I know of one trial in the UK using XL119, I heard that all the patients where taken of 5FU and given the XL119 because the patients in that arm were doing so much better.
My Dad was on gemcitabine and carboplatin which made him quite tired. Platinum drugs and gemcitabine seem to be the first line treatment for non resectable disease, you should be aware that there are different generations of platinum chemo drugs (ie some are newer and better on the toxicity front then the older ones) carboplatin is not as harsh as cisplatin (2nd generation) and oxylplatin is 3rd generation. Quite a few patients on this site have used oxy. Treatment options vary depending on where you are and whether you have an oncologist who is prepared to think outside the box and try newer breakthrough treatments. This site is very informative – try looking at the chemo worksheets under general info section and discuss all options with your mums oncologist.
Hope this helps, Jules
alison and jon
that is fantastic news, Jon, you will be in excellent hands. Any questions about the surgery – what to expect etc, just ask – my dad(geoff) is on this site often too. Wishing you all the best for the op.
Jules
kate,
my dad had probs with fluid near his lungs after his first op and delayed wound healing after the second. Both are easy(ish) to fix. (chest drain for fluid, vac pack for wound). he also had probs with temp spikes after the first op which indicate infection somewhere, blood cultures should be taken (blood taken and tested for growth) and then antibitics can be tailored to the origin of the infection, in the meantime maybe a broad spectrum AB should be given.
The most important advice post op I think is to get excercise and good nutrition to aid the healing process.
good luck, jules
kate
I’m sorry I can’t help you there, my dad’s hair has thinned a bit, I put it down to the stress of all of this not the op specifically. I hope your mum continues to recover well, just felt i should reply as i know how disheartening it is when you don’t get a response.
good luck, jules
caroline,
sorry I have just noticed your last message asking about the trial in the UK. The trial is being held at The Royal Marsden.
I am glad that the gemcap is working well for you, here in the UK a gemcap trial on pancreatic patients reported promising results (another Marsden trial).
hope those platelet levels keep rising,
julies
my Dad is following the Gerson diet too. He says that the fresh carrot juice gives him a real energy boost and that he is feeling better then he has done in over a year – ie prior to diagnosis. I think it makes sense that diet is crucial in boosting the bodies natural immune system. My Dad has read the book by Michael Gearing Tosh, a well respected Oxford don who followed the diet and refused conventional chemo following a diagnosis with myeloma. He lived for 11 years after diagnosis.
The diet is strict, and juicing all those carrots can be labour intensive, my Dad is working on boosting his natural immune system and is planning further treatment in addition to the diet.
Jules
Alison,
Great news about the scan. Good luck on Weds, Peter Lodge has a lovely manner and is very down to earth and upbeat, Jon will be in very good hands. The surgery went very smoothly for my Dad and the nursing post op care was superb at Bupa. Even though my Dad has suffered a recurrance his tumour burden has been reduced and this has enabled him to be free of alot of possible complications/symptoms generally associated with a tumor in the liver. It has also enabled us to be able to consider some treatments that might not otherwise be available.
We have been able to enjoy a great Summer together including a break in Cornwall and my Dad was able to enjoy some walking. My Dad is doing ok and is focusing now largely on diet and alternative supplements to boost his immune system post chemo which he feels has now run its course. He is also researching treatment options as he waits for his blood results to improve. On the whole my Dad is active and eating well and has a good quality of life. At the weekend he was enjoying some gardening.
I will be thinking of you both on Wednesday, do let me know how you get on.
Jules
tford
thankyou for sharing your experience, that is great to hear about your father in law, I have seen many examples where a positive attitude helps. Did your father in law have any side effects from the xeloda?
thanks, jules
caroline,
thanks for the info. It is very reassuring. I hope you are doing ok, we have been away in Cornwall for a couple of weeks hence the slow reply. My Dad was able to enjoy some cliff top walks in the sunshine and I did some bodyboarding with my daughter, my dad feels alot better for a break. I hope that the lethargy does not stop you doing some of of the things you want to do – from reading your blog this disease does not seem to have slowed you down too much!
very best wishes, jules
juanita
thanks for your reply, it is very reassuring. Dan sounds like an incredibly strong person to have survived cancer twice before, I have heard similar stories. My dad appears alot more positive today – I told him that it is relatively common for chemo to be interupted in this way.
After all that you and Dan must have been through I hope for a continued good response to the treatment.
Jules
juanita,
thankyou so much for the information, i am sorry that your husband is going through this too. today when my dad went for chemo they said that his white blood cell count and platelets were too low to give the chemo and that a bed would not be available in the hospital until saturday to give him a transfusion. understandably, my dad is anxious about this and does seem to be having a bad run of it — we worry about delaying the treatment and giving the cancer chance to progress, does your husband have to delay treatment when this happens? – how does he feel about this?
jules
juanita,
That is great news, I am really pleased for you and your husband that he is having such a good response to the treatment. i agree with you that half the battle is finding a dr who is not dismissive just because we are dealing with cc. There is hope out there, my dad is having a good response to gemcitabine and carboplatin – he has outlived all the gloomy predictions so far and i am sure that he will continue to do so. (diagnosed 4/7/05).
jules
