jules
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Ron
My Dad did not feel up to coming with us in the end, he was concerned about the journey and the heat and at the time he was having chemo. I took my daughter and we had a fantastic time, it was a much needed break. In answer to your question, I think my Dad was unable to get a reasonable price for insurance, I think it is possible, even for a pre-existing condition to find insurance although I seem to remember that it was not easy (my Dad will be able to clarify this).
Cancer bacup are able to provide a list of insurers who might be able to help, I do hope you are able to go.
Jules
Kris,
chemo has a cumulative effect. Sometimes chemo can effect the bone marrow and blood counts which may limit eligability for clinical trials or other treatments. Other patients tolerate chemo very well. The platinum drugs (cisplatin, carboplatin and oxylplatin) tend to be the most harsh. My Dad did not tolerate chemo very well however other patients I have come across have not experienced anything severe. You should be able to gauge how your husband is doing on chemo soon into the treatment. I would advise keeping an eye on blood counts – iron (hb) and platelet levels.
In answer to your question we are located in the UK. We were able to find an experienced surgeon here (I presume you are in the US). My Dad commutes to Germany to recieve immunotherapy. There is further info on immunotherapy under ‘research’ on this site.
Kris,
I am very sorry to hear about your husband and I can appreciate your reservations regarding chemo. I just wondered whether you have considered less destructive treatments such as immunotherapy or gene therapy? My Dad is having immunotherapy and the only symptoms he experiences is mild flu like fever the evening of the treatment. although it is difficult to evaluate the success rates with immunotherapy (as cc is so rare) the same could be said for chemo..
We are also looking into gene therapy as a back-up, again this is a treatment with few reported side-effects.
I just thought you should know that there are other options out there – in addition I would keep on getting surgical opinions. My Dad had a resection despite artery involvement, it is risky and difficult surgery but some surgeons are more skilled and aggressive in their technique then others.
Jules
peter
I think you confused jeff with Geoff (my Dad) who is also a member on this site. My Dad is the Geoff having DC therapy, he has a scan soon and we will be able to evaluate better then how the treatment is going. For now he is doing well and looks better then he has done since all this started, I think that the DC treatment gives him a real boost.
All the best to you,
JulesI can’t resist joining in – I am an ex nurse (left the profession some time ago) and I have some stories that would horrify all of you..
I feel very angry about the way the NHS has let down my Dad and that he has had to use his hard earned savings to pay for his treatment. He has effectively paid twice..
I don’t know that I would agree that the NHS is ok for some elective procedures – I used to work on an orthopeadic ward, I saw patients waiting far too long in agony for vital surgery eg hip replacements, even when they did finally get to the top of the queue they were then subjected to delays and cancellations (often after they had already had their pre med).
I believe that the NHS is an institution that is outdated and incapable of survival in todays world of modern medicine, not only are patients expectations raised (Drs love the internet!) treatments are now so advanced, a system designed in the post war era can simply not keep up not matter how many faceless beaurocrats they employ!
We should follow the German model and abondon the NHS. Rant over, just wanted to add my views!
Jules
Bernie
I would reccomend seeking second, third, fourth, etc etc opinions on the surgical front if your mother is willing bearing in mind that this type of surgery is complex and risky. You need to find someone highly skilled. Ask them if they have done this type of surgery before and if they are prepared to operate when there is artery involvement – some are willing to proceed in this situation, others are more cautious.
My Dad had a resection to remove a tumor covering 75% of his liver – so yes, larger masses can be removed, the liver regenerates and will grow back. This is a rare disease – beware of the gloomy statistics, we have learnt to ignore them – my Dad has lived long past all his expected ‘depature’ dates. There are others on this site who also offer inspiration and hope.
best
Jules
yes you can. there also seems to be a bit of confusion over whether you can have a resection following insertion of a metal stent. My Dad had an MRI and a resection after having a metal stent. Surgeons views differ, we were fortunate to find a highly skilled and experienced liver surgeon.
Michelle
FANTASTIC!! I am so pleased for your dad and your family. My Dad has also radically changed his diet, sometimes we worry that it is too restrictive and bland – that he is missing out on some of the foods that he used to love..
Would you mind elaborating a bit on the specifics of the diet? I am sure that diet it critical in the fight against cancer and I have heard similar stories to your Dads.
I can empathise with your thoughts on the whole cancer ordeal, until you’ve experienced it you cannot begin to imagine the devastation it can cause.
Peter,
Your attitude sounds very similar to my Dads (Geoff) – despite the fact that his recurrance was diagnosed April 06 his scans show no change. We have been told that at present research in the cancer immunotherapy field is moving very fast, if we can just keep things stable then the techniques are improving all the time. You may or may not be aware of some recent research carried out at Oxford University here in the UK which incoporated work injecting cancer with viruses including the common cold virus with impressive preliminary results – I think my Dad understands it better then me so he may be able to post and explain it better.. (I will look for a link and post it meanwhile). what are the ‘off label’ drugs you are planning on taking?
I wish you all the best with the chemo regime, meanwhile I hope you have a great break and respite from it all in Colorado..
Jules
Dear Clements family,
I am so deeply saddened to hear that Mark has passed away. My heart goes out to all of you, I cannot begin to imagine the anguish you must be feeling right now. This disease is cruel beyond words. I am so very sorry.
I want to echo some of the sentiments already expressed by other site members and thank you for all of your hard work in setting up and maintaining this website – an invaluable resource for all of us either personally dealing with this disease or caring for a loved one. Thankyou.
Juliet
Joyce,
I’m sorry to hear your mum is having to deal with this disease. I can understand how you feel about finding a sympathetic dr, we have met good, bad and indifferent drs along the way since my dad was diagnosed in July 05. It is bad enough having to fight this beast without having to deal with negative and uncaring drs, Attitude and communication in a supportive and constructive manner is so important. I would not be afraid to tell this onc that his attitude is hurtful and unacceptable.
best of luck, Jules
peter,
At the hotel in Germany we met some other patients from the US who were telling us that they had recieved some initial treatment in Germany and then had been able to recieve the remainder of thier treatment in New York, I believe that Dr Nesslehut visits New York regulary and works closely with a colleague there – I think his name is Dr Chang.
We have been told that it will take about 4 treatments with DC cells before we will see whether my Dad’s cancer has responded to the vaccines, so we cannot attribute the stability of his disease to the vaccine. As my Dad has said on this board, this treatment is at the research stage.
Jules
serap
I have not come across this and would be very interested to learn more.. I have never heard anything as optimistic as 64% before.. what is gendicine? (sounds a bit like gemcitabine) good luck, let us know of what you find out, sorry cannot be of help, jules
