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Cholangiocarcinoma

16 Sep 2019 15:24

My husband was diagnosed with stage IV cholangiocarcinoma at the beginning of July.  It was a complete shock which has left us dazed and crushed.  Things got worse after 1 round of GEM/CIS chemo when my husband suffered an arterial blood clot.  He is now on daily injections of Tinazparin and was told that the cisplatin had probably caused the blood clot and he would not be given this drug again.  After a 5 week break he has resumed chemotherapy but only with gemacitabine.

When I asked the onchologist about being given capecitabine as well I was told that this was not NICE approved, nor is SIRT treatment (£25,000 per treatment privately), or from what I can find, any second line of treatment.  Cholangiocarcinoma is a nasty cancer which is usually only discovered when it is too late for radiotherapy or surgery and it does not respond well to chemotherapy.  I can understand that a treatment regime must be considered safe before it can be approved for use but this leaves suffers of this cancer in an impossible situation.  My husband is in an even worse place as he can no long have the only "OK'ish" treatment available and, as a result of his reaction to the cisplatin cannot have most of the precious few other drugs available.  In between feelings of despair and constant worry about my husband I search the internet for eligible clinical trials as this appears to be his only alternative.

I have to say that both my husband and I feel that his oncologist has "written him off" and appears to dismiss clinical trials and leaves us with no hope.  A doctor in Manchester was much more supportive and my husband has signed up for 1 clinical trail but it requires him having a particular mutation in the cancer.  As this only occurs in 10% of these cancers his chances don't look good.  I did ask our oncologist if my husband could be referred to a trial which is currently in set up but he managed to read the requirements for the trial as being X AND Y instead of X OR Y.  I will have another go at him in a few weeks when this trial is actually recruiting and after we have seen how the gemcitabine treatment is going.

At the moment I spend my time crying my eyes out, trying to make sure that my husband eats well and early in the day (food sits heavy with him during the night), trying to make the house weather proof (ill health has stopped much of the building work) and cycling daily for Cancer Research: I am now considering writing to my MP to complain about the NICE decisions.  Knowing my MP to be a complete "yes-man" I am sure my words will fall on deaf ears but it will make me feel as if I am doing something.  Has anyone else been refused SIRT treatment or struggling to find an approved second line of therapy who would like to join the fight?

Cholangiocarcinoma

18 Sep 2019 16:08 in response to Zephyrus

Welcome to Cancer Chat Zephyrus although I'm really sorry to read about your husband's situation. 

I can't begin to imagine how difficult and frustrating this must be for you both but I just wanted to let you know we're thinking of you and will have everything crossed that your husband can be put on to that clinical trial.

You may have come across this already but we have a clinical trials section on our website that I hope will help you with your on-going search and our cancer nurses are just a phone call away on 0808 800 4040 if you'd like to talk things through with them as well.

Thinking of you both at this difficult time.

Kind regards, 

Steph, Cancer Chat Moderator

Cholangiocarcinoma

19 Sep 2019 20:33 in response to Moderator Steph

So the good news is that if we have a spare £25,000 my husband is suitable for SIRT. The bad news is that there are 5 tiny metastases in his lungs. Can there be any more **** news! Haven't we had more than enough for 1 year.