Trust me to have Squamous Pancreatic Cancer :-(

[LindaH]

Hi,

My husband and I went to see the specialist last Tuesday.

He started by telling us I have a very unusual cancer and one they don't really have an awful lot of information about. Something like 25 cases in the UK.....well here's case number 26

It is called Squamous Cancer of the Pancreas, this type of cancer normally appears in either the Gullet or the Rectum, so this is why the Doctor we spoke to on Tuesday was unable to give me specific life span period of people who have had this cancer, but he was hopeful he would be able to shrink the tumour with Chemotherapy and Radiotheraphy, which could kill the tumour completely so I would therefore go into remission, where the tumour was dead, but may not be able to be removed by an operation, unfortunately, there's no guarantee it could still keep growing.

There is a small chance the Chemo could shrink the tumour enough for it to be removed via an operation, though he didn't think that very likely as the tumour is attached to all the major blood vessels.

However, the doctor gave me hope in his attitude and stance and also the way he never once said 'There is nothing we can do' which I did feel was good. I did ask whether it would be an advantage for me if I went to see a Pancreatic Specialist Unit and he said if that is what I wanted to do, he would help me all the way, but my fear there was / is, would I just be delaying the badly needed treatment, by having to wait to be refered to the Specialist Unit, then all my records would need to be sent there...etc and he agreed with me on that point, so we decided to go ahead with the Chemo at my local hospital and review a month down the line if I still felt I would like a second opinion.

I am having 2 sets of Chemo which will be every two weeks (so it will be two weeks on and two weeks off) over a period of months. The first is called Gemcitabine and the second and the one that could make me feel very poorly is called Cisplatin. With Cisplatin all my hair will fall out.

Could I ask at this point, would it be of any benefit for me to take a course of Echinacea to try and improve my immune system, or could it interfere with the forth-coming Chemo?

So, that's it really. I will be going for another CT scan (computerised tomography) on February 19th when they will be able to tell if the tumour has grown more, or whether it has moved into the other organ like the Liver (which I hope and pray that it hasn't) if it has, it will make things more complicated, though I do not know how complicated that would be, I just know it won't be good.

I'm just trying to live each day as it comes and live in hope, hope, hope.

Does anyone have experience of this Tumour?

I would love any information if possible.

Thank you

Linda x

[PCUK Nurse Jeni]

Hi Linda,

will email you,

Jeni.

[DRAD3]

Hi Linda

Will leave Jeni to email you with her expert advice but wanted to wish you all the very best with the treatment. I am sure you are right to get cracking as soon as possible, rather than delay with a re-referral. As you say, you can review this if need be. I am sure Jeni will advise you with regards to the treatment you mention - I think others on the forum have some experience of this regime and will no doubt tell you what they know. Bear in mind that everyone is different and hope that you have minimal side effects or that those you have are well managed - I am sure this will be the case. Keep positive and remember we are here for you. Take care.

lots of love

Deb

x

[Catherine]

Hello Linda,

That sounds quite promising. I don't know anything about your type of cancer but I do know about your chemo regieme. My mums on the same one. She's half way through and has been ok so far. The only real side effects she's had are being very tired on the Saturday and Sunday following chemo days. Her day is a Tuesday. She hasn't lost her hair, although it's gone a bit thin and lank looking none has fallen out. The week off chemo was great for her she was out and about all the time. Her appetite has changed a bit, she's gone from a meat and veg person to mainly eating bacon, pasta and more snacky food. But she hasn't lost it completely. I'm excited as yesterday I said I fancied making pulled pork and she said she'd fancy that so I'm making that tomorrow.

You will get steroids and anti sickness drugs in with your chemo and to take home, they work or have done with my mum really well. Are you diabetic? If so it might be worth talking to your GP or diabetic nurse before you start as the steroids and chemo can play havoc with that. So it could be good to have a plan in place just in case they do. My mum didn't, but this is sorted now.

Try not to worry too much about your CT scan, my mum had one just before chemo. They just want to know what your exact starting point is so they can measure the success of treatment. They seem much more on the ball about such things than they used to be.

I hope I've been of a little help there. Lots of love Catherine xx

[LindaH]

Bless you Catherine and Deb, helpful advice as always and your good wishes are very, very much appreciated.

Watch this space !!

Linda xx