ron-smith

Mary’s son
Welcome to our small company, but, as everyone will tell you, it is not one any of us wishes to join. It is not an easy path which your mother is on and what she will need is good family and professional support. You will find in many cases that the professionals will learn as they go on. Try not to think too badly of this since it is not a well known cancer with established procedures.

As for immediate advise, it is difficult to advise since you do not give much information. Try to make sure that her current hospital has relevant experience in treating this cancer, Don’t be affraid to ask for further opinions from other surgons. Be realistic about her age and general health, Chemotherapy is a poison that you are feeding into the body, in the hope of killing a worse poison. It very rarely has no bad effect. It is a balaning act, not a cure. It may help prolong her life and make her more comfortable. It may be you cannot ask for much more than this.

Gemcitabine is regarded as one of the chemos with fewer side-effects and it has been shown to have some positive effects, but it can still make her feel nauseaus and tired. That is when the family support is important.

Try the Search facility at the top of the page, enter Gemcitabine in the Search and you should find personal experiences of the effects of using Gemcitabine being described.

Whatever happens – good luck to you and your Mom.

All the very best

Ron

Valjee

Just a small point – the free NHS prescriptions, from April 2009, only apply to England. Scotland Wales and Northern Ireland introduce or intrduced free prescriptions for all at different times. Scottish charges have been reduced for the last 2 years and will be free from 2010. My main requirement for drugs relates to Angina so the earlier reduction and pre-payments were good news. However, it is now good news all round, in a “Catch 22 “situation!! I’d much rather be paying for my normal 1 or 2 prescriptios per annum that I used to need.

On a slightly different note, I assume you are aware of other benefits you may be entiled to due to your condition, such as Incapacity benefit, Attendance Allowance, Disability Living Allowance, free travel concessions (busp pas etc). These are also age related but there is plenty of info on Government web sites.

You may also be able to access the full capiatal value of any private pension funds or life assurance funds due to the condition’s terminal nature. This will depend on the terms and conditions, but well worth looking at. The mony is better being ing your pocket than the insurance company. If this does not apply, you can check your policies to see if you qualify for Premium Waiver Benefit, when the insurer will pay your monthly premiums on rour behalf. Again, this is due to your condition and is certified by your doctors.

All the best

Ron

Hi Kris

I believe I will be getting the Tamiflu vaccine next month when they start it in the UK.

Question – Am I more at risk sitting in a packed doctors’ waiting room waiting for my vaccination or staying at home and not getting the vaccine?

All the best

Ron

This is a quote from the Cancerbackup site:

“Platelets usually survive for 7

7 years in Glesca and you didn’t read Oor Wullie or the Broons in the Sunday Post? Well, just in case it comes up in your next pub quiz, the answer is:

Fat Boab, Soapy Soutar and Wee Eck.

This will give you a lot of info on Wullie:

http://en.wikipedia.org/wiki/Oor_Wullie

Still no answer on how much of the red comes out of a bottle? You are coy about it.

Anyway, you were always going to be an adopted daughter of Alba.

– BUT –

Scotch whisky does NOT have an “e” in it!

Ron

Hi Kris

I am sorry to read about your current problems, but you are
not alone. I am on gemcitabine and have always found it difficult to complete the expected courses. When I started I was to have 7 treatments followed by a rest week, but never managed more than 3 treatments then needed a week off. Next, they decided I should have 3 treatments followed by a rest week, but in the 3 or 4 months I had this regime I never managed more than 2 treatments then needed a week off. So for the last few weeks the treatment has been changed to 2 weeks followed by a rest week. So far, so good but I am starting to suffer from chemo related troubles. I have rashes on my arms and buttocks (luckily not itchy), swollen ankles and feet and breathlessness. So it may be time to have a longer break from the chemo. My next CT scan is on 15 June so the result of that may point the way forward.

I know we had discussions with Jeff some time ago about the cumulative effects of the chemo and it was agreed that there was a build up maintained within the body that continued to do its work even during breaks. I am not sure that anyone knows how long this lasts but short breaks should be ok. One question I asked the oncologist was, if I had a long break, would restarting the chemo give the tumour the same hit as when I originally started? He couldn’t give me an answer: so much of what we are going through is pioneering stuff.

Lisa

Obvious question but, have you had your blood pressure checked since this started? Not just a quick pressure test that shows it is ok when you are seated. A proper blood pressure test will also show the results when you stand up and sit down and should be done by your GP.

Ron

Hi Julygirl

As you can see, the people on this site are very friendly and helpful; it’s just a pity that you have to join us in this way.

This thread was started by Marion some time ago and will give you contact details that may be useful to you:

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2379

Since you are based in York then Prof Lodge, at Leeds, would seem to be an obvious choice. He is a very highly regarded surgeon and your own consultant should be able to refer you to him for his opinion.