jules
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nancy,
that is great to hear that you found a surgeon who was willing to help – I have always said to people keep going until you find a surgeon who will operate. We consulted with yuman fong at sloan kettering – he was willing to operate on my dad although he said that he knew an excellent surgeon here in the UK – as it happened we went to the surgeon (peter lodge) here and he was brillliant. My dad’s cancer did return but i think that was because it was at a very late stage. the surgery did help in that my dad never experienced pain throughout his illness and i think that this was because the huge tumor in his liver was removed.
I understand your concerns re chemo – I had always though that it was better to go for a combination chemo, my dad had gemcitabine and carboplatin which was effective however it was very harsh – it hammered his bone marrow, his platelets and hb levels never really recovered and this caused alot of problems for us to manage. It is so hard to make these decisons though, as some patients can cope with platinum drugs (cisplatin, carboplatin and oxylplatin) very well. It really is an individual thing.
after my dad’s surgery we were told that chemo was unproven in terms of benefits and with that we should wait – if the cancer reared its ugly head we might want to think about it later on… in hindsight I wish my dad had adjuvant chemo as it might have just killed off those stray cancer cells before they had chance to establish themselves. I also wish that he had been given radiation. I wish we had slung everything at it and not just gone for the ‘wait and see’ option…I think that you will find that alot of people whose cancer did return after resection might say the same.
But then you have the decision of which drug(s) to go for – when it comes to answering this question I would start with the excellent chemo worksheets on this website (I think they are still there) print it off, take it to the onc meetings and also do some research on current trials and ask your onc about promising early results, an experimental treatment maybe a better option..
wishing your friend a speedy recovery from the surgery and all the best for the future,
julesOh charlene, how I feel for you. I totally understand your anxiety and your fears. I wish I could be there right now, I would give you a big hug. We are here for you. Just come here and vent, we all understand.
You need to keep strong and armed with information to fight this beast, you will find strength you never knew you had.
My Dad had a couple of courses of Gemcitabine and carboplatin. Carboplatin is less harsh then cisplatin and just as effective. These drugs are platinum based chemos, cisplatin is 1st generation, carboplatin 2nd generation and oxylplatin is 3rd generation – 3rd generation being newer, and I think it is correct to say superior. All these platinum chemos hammer the bone marrow and can effect platelet and heamoglobin levels. Chemo is cumulative, it is not really possible to predict how many courses your husband may be able to tolerate/need and side effects/responses vary. It really is an individual thing. One thing is certain – combination chemo such as this one is more effective then gemcitabine alone (I can refer to data released from the abc 02 trial here in the UK to support this).
I trust that your husband has been surgically assessed, have you sought more then 2 or 3 surgical opinions? – there are surgeons out there who do take on ‘hopeless’ cases. (As in my Dad’s case – his resection certainly bought us more time and can be curative if good margins are acheived). Get your husbands scans on disc and fire them off to some of the best people for an opinion.
It sounds as though your husband has lymph node involvement and this could be why surgery has not been considered an option. However, I have read articles that state that lymph node involvement should not rule out a resection as a resection can also be carried out for palliative reasons.
Charlene, hang on in there. Alot of people have very positive responses to chemo and maintain a good quality of life. (See Caroline Stoufer’s blog on this site – a perfect example). Please keep in touch and remember that we are here for you.
take care, Jules
Dear Ginger,
I am so sorry for the loss of your dear Aunt. I empathise with you when you describe how this disease makes our loved ones almost unrecognisable. I know only too well just how much it hurts to watch somebody that you love so dearly wither away. Our losses feel raw right now, hopefully in time we can remember our loved ones as they were when they were well, when they were whole.
with love, Jules
Celoi,
Your Dad is truly a courageous and strong man. I am thinking of you and your family and hoping that he will continue to improve.
With very best wishes, Jules
Rhodymn
So sorry to hear about Jeff. I hope that the Mayo Clinic is able to offer him some treatment options. I would keep getting surgical opinions if I were you. There are some surgeons out there who are willing to operate on large ‘inoperable’ tumors.
It is difficult to weigh up treatment options – I would just find a Dr you feel you can really trust, who is prepared to think out of the box and has plenty of experience with this disease – go in there with a list of questions, it is such an emotional time it helps to think beforehand about what needs to be asked/clarified. I used to go into the appointments with my Dad with a list and also research articles that I wanted to discuss with the Drs, I also made it clear that we wanted aggressive treatment and that we were prepared to try more experiemental procedures/treatments. I think with cc they rely too much on statistical data. Ask them what they are giving pancreatic cancer or bowel cancer patients now (most of the drugs used on these more ‘common’ cancers are eventually used to treat cc patients – are they prepared to include cc patients in trials for other gastrointestinal cancers?)
be strong,
JulesJeff,
Great news about your scan and so pleased that you enjoyed your holiday.
I believe immunotherapy bought my Dad alot more time free of harsh side effects. When it became apparent that the DC cells were no longer effective on the cancer Dr Nesslehut modified the treatment – when he drained ascitic fluid from my dad he isolated the cancer cells and primed the DC cells to attack those cells specifically. Unfortuantly my Dad was quite weak by the time he had his first treatment with this new protocol and was not able to continue with it, however I think the development of this type of treatment is something that we should monitor here on this site..
take care, Jules
Thankyou all so much for your kind messages. At the moment I am just taking one day at a time and all the rollercoaster of emotions that go with it. I just wanted to post my tribute to my Dad that I read at his funeral:
One of the many things that I loved most about my Dad was his endless energy and appetite for adventure. whether he was at the helm of a yacht or riding his mountain bike over the Downs he pushed himself to the absolute limit. although I feel devastated to have lost my Dad so soon I take great comfort from the fact that he lived such a fulfilled life.
Life was certainly never dull when he was around and his enthusiasm and sense of humour was infectious. My dad would roar with laughter watching Inspector Clouseau negociate a tiny toilet on a plane with both legs rigid in plaster and on crutches – my Dad’s chuckle could be heard throughout the house. Another favourite was Mr Bean driving his mini whilst getting dressed, shaved and cleaning his teeth. This required him to steer the car with his knees (something I remember my Dad doing on occasion – allowing him to navigate at the same time).
On a more personal level, I am grateful that I had the opportunity to tell my dad just how much I loved him, that I was proud of him and all that he had achieved with his life. I am also so very grateful for all the loving support he gave Sophie and I over the years. He was always thinking of us. I remember on one occasion when he even managed to ring me from his bed in hospital to wish me luck with and exam that I was taking that morning. His solid, unwavering support was never in question. Sophie adored her grandad and we have many treasured memories of the times that we spent together.
I will remember the good times Dad and I feel priviledged to have had your influence in my life, you will remain in my heart forever.
Amlicar,
My Dad was also nervous about taking steroids. When he was up and about they did make him a bit hyper. However as my Dad’s disease progressed steroids worked well for him, improving his appetite and easing the nausea and also giving him more ‘awake’ time. He took 5mg dexamethasone once daily.
Another thing that does occur to me is that if your Dad’s blood counts have taken a hammering he might want to consider some iron injections and/or a blood transfusion. My dad had daily aranesp injections and transfusions helped boost his energy levels and in turn his appetite greatly.
Jules
I wish you and your Dad the best
Thankyou so very much to all of you for your messages of comfort and support. It really does mean so much and I know that my Dad would be moved. Peter and Patricia – you are right, the bond that we had became even closer throughout my Dad’s battle. My Dad regulary told me just how much it meant to him that I was by his side supporting him and this is a great comfort to me now.
Do not lose hope – we must continue to strive to raise awareness and promote research into this truly devestating disease. I remain as committed to that cause as ever and I will continue to assist with input on this site wherever I feel I maybe able to help.
love, Jules
Dear freinds
thankyou so much for your kind words of support, it really does mean so much to us right now. My Dad came home from the hospital today – I have to say that all the nurses looking after him were so kind and the Drs were very thorough. He appears less confused and looks a better colour after the transfusion however he is very weak still and hardly eating. He has to be encouraged to take fluids. He was so glad to be home, I helped him upstairs and he just flopped on the bed – he looked so relieved. My Dad is so brave, caring of others – he asks after my daughter (she has just started a new school) it seems to bring him great comfort to know that she is happy. He is comfortable and does not appear to be suffering any pain.
Where there is life there is hope,
JulesSara and Marion,
thankyou for your good wishes, the new protocol that my dad had this time contained DC cells primed with tumor cells (taken from the analysis of the ascitic fluid), therefore this treatment is aimed specifically at the eradication of the tumor. Dr Nesslehut uses his initiative and is always refining and improving on the technique.
Sara, I am sorry the oxy trial does not appear to have been successful, I can understand your interest in the DC treatment, please bear in mind that it is an experimental treatment, we cannot directly attribute the stability of my dad’s disease to this – he has also radically altered his diet and takes various supplements.
If you are interested in Duderstadt clinic then I can tell you that it is not too hard to find – we fly to Hanover and take a taxi to the clinic, it is about a 1 1/2 hour drive south from the airport.
Jules
we went this week to Duderstadt for another treatment. The last 2 treatments have been a different protocol – Dr Nesslehut has devised a superior technique – although the side effects last a little longer (fever on and off for about a week following treatment). My dad has been moved onto ‘more experimental’ protocol following the development of ascities which indicated disease progression. The ascities has stabilised – there has been no more fluid accumulation since the last drainage (carried out in Germany). Dr Nesslehut was very pleased to see this and indicated that the new protocol appears to have been effective. My Dad will soon be having a scan which we hope will confirm this. Unfortuantly my dad continues to suffer with a persistant cough which has become very debilitating for him, disrupting his sleep and even ability to eat at times. We suspect that this is caused by an infection, we are going to obtain cultures for analysis to determine the right antibiotic to treat this. My Dad also uses a portable nebuliser at home which provides short term relief.
Just thought I would update you all – so far the DC therapy seems to be keeping things stable, I know how much all of us are waiting for a breakthrough in the fight against this dreadful disease.
Jules
Dear Jeff,
your ability to think of others and the impact this disease has on a family – to care so much for your loved ones (and offer messages of comfort to others on this board) leaves me thinking that you are a truly special person. Not just a cc patient, your resolve and humour has stood you in good stead and I am sure that it will continue to do so, have a wonderful break, love JulesSara,
I will reply to you on behalf of my dad as he is not feeling too good right now. My Dad (Geoff) has DC treatment as a clinic in Germany under the care of Dr Nesslehut (if you search back on my dad’s previous posts you will find further info, he has been communting to Germany about once a month since the end of last year).
My Dad has not been on chemo with the treatment, the side effects are minimal – fever and flu like symptoms on the evening of treatment. The treatment is experimental and my Dad’s disease has been classified as stable, he has also modified his diet and takes various different supplements. We do not know whether it is the treatment or diet – or some other factor that has kept the disease dormant. Overall I would say that the treatment has provided my Dad with a reasonable quality of life, the commuting has been tiring though. Dr Nesslehut always gives my father alot of time and is very knowledgeable and respectful, recently he was able to assist with drainage of ascities, in clean surroundings (a far cry from the filthy wards in an NHS hospital in the UK). I personally believe that immunotherapy offers alot of promise in the fight against cancer, it is an exciting treatment that can be modified to seek out individual tumor markers and most importantly, long term side effects are nil.
Hope this helps – please see our other posts for further info. I hope that the OX-40 trial goes well for you.
Jules
Jeff
We live on the south coast in Sussex, Ipswich is in East Anglia – quite a way from us, we are about 2 hours drive from London. Is your wife from the UK? – the webcam sounds like a great way to stay in touch. So you cook aswell..you really are too good to be true..
my Dad’s having a bit of a rough ride right now with ascities and a really bad persistant cough plus he has to get up approx every hour at night to ‘pee’ – as he puts it. He is being really brave and feeling pretty dreadful, it is very hard for us right now. I love him so much – I always have thought the world of him. I find it hard to reach out to him right now as, understandably, he is extremely low.
