Bad news....and more bad news

[Nardobd]

I can't believe that the news Ted's cancer has spread isn't the worst news we've heard today! Well...it probably is, but it doesn't feel like that. Long-term forum readers will remember that Ted had trouble with his leg, due to a build-up of calcium in the artery. This has progressed and two weeks ago I really thought he had a DVT in his leg, which was swollen and painful overnight. Long story short, it wasn't a DVT but a scan shows he has two complete blockages of the artery which the radiologist said that could mean he could lose his foot if nothing was done in the long term. We'd heard nothing more until today when we went for the results of Ted's three-month scan to see whether the Capecetabine had done any good.

The tumour in the pancreas hasn't changed but a nearby lymph node has increased in size from 10 to 18mm. There are also two "suspicious" areas in the omentum (the fatty tissue which lines the abdomen) which are almost certainly mets from the original tumour. The consultant recommended that Ted goes back onto gemcitabine which has had better results in the past for Ted but also gives him more side-effects. Before doing this, though, the consultant wanted to find out what the vascular team would do for his foot. The radiologist had, apparently, recommended an urgent referal to the vascular surgeon. Ted's consultant phoned the vascular team who told the consultant that they almost certainly would do no more than prescribe soluble asprin and mobilisation. Ted can't walk any more than 250 yards (on a good day!) and is too scared to leave the house without company. Since I work that means he is housebound for most of the week.

Whilst it's good that Ted can go straight back onto gemcitabine, I can't believe that in this roundabout way we've been told that he must continue to be housebound for 80% of the week and that long-term he will likely lose his foot. I guess the NHS are now saving money by not treating cancer patients for long-term problems!

[john27]

Hi Nicki

Really sorry to hear about the problems Ted's having. I know you have probably already done this but just in case: http://www.merckmanuals.com/home/sec03/ch034/ch034b.html might be helpful and will make alot more to sense hopefully to you than it did me but wanted to help if poss.

I hope the gemcitabine goes well and can turn things around abit. Nervous week here as Mum goes for the biopsy then almost definately gemcitabine too.

I have been looking into the papaya thing in more depth and have read some really positive stuff about lab trials with the leaf extract in Japan, so have ordered some for Mum (on its way from Aus) call me silly but it's the only scrap of hope keeping me going....

Best wishes

John

[Nardobd]

Thanks John and thanks, too, for the link...I've read up some on peripheral artery disease but this is a very comprehensive site you've found, so I appreciate it.

Wishing the best possible news on the biopsy. Let us know how Mum gets on.

Glad to hear that the papaya gives a little hope - anything which seems based on reason and proper trials is worth a go in my book. Would love to know where you managed to order the leaf extract from.

Kind regards

Nicki

[john27]

Nicki.....

The papaya leaf extract is on a site: harmonic-health.com 500ml is about 21GBP inc postage. Figured it can't hurt so why not, ya never know!

Glad the site is useful..hopefully you can dig something out of it to help Ted..

Regards

John

[ladywood]

Hi Nicki, so sorry to hear the news about Teds problems and just wanted to say I will be thinking of you both and keeping my fingers crossed for you. Love and hugs Marie.

[Nardobd]

Thanks John - duly ordered

Thank you Marie...knowing that you're thinking of us helps so much. I hope you're getting on ok - let us know.

Nicki x

[millyjo]

Hi nicky,

Sorry to here about Ted's results and the problems with his legs. Let's hope that a quick response from the vascular team will prevent amputation.

Have constantly checked for news of you both, hoping all was well. I have followed your posts through your struggles, and have my fingers crossed for you both.

I hope you are looking after yourself too.

You are an inspiration.

If only there was more I could do other than cross my fingers.

Love and hugs for you both.

Millyjoxx

[Nardobd]

Thank you Millyjo...all the thoughts and prayers do help.

Haven't heard from you for a while and I was wondering how you were getting on.

Love

Nicki x

[john27]

Hi Nicki

I hope Ted is feeling better and you are ok. Mums biopsy has been delayed to the 22nd because one of the two surgeons has had an accident so playing the waiting game but it is stressful and kind of makes me angry as it's six weeks from diagnosis now. But Mum is mostly ok, she has been on Oromorph but it is giving her headaches and fuzziness so she has stopped and the pain isnt too bad. Mac nurse is due today so may have some advice on pain control I'm hoping. Also delayed is the papaya leaf extract, had an email from them yesterday saying they can't send til the 18th now..never been the best at queing so this is all frustrating!....

Best wishes to you both

John

[Ellie]

Hi Nicki

Been away recently, so only just read your post. So sorry to hear about Ted. Not one, but two worries now.... At least he can have the other chemo, so fingers crossed it works well for him. Hope something can be for his foot, too.

Just want you to know I'm thinking of you and I know you will keep fighting and get the best out of all the medical staff involved. You're certainly going through tough times again, but keep strong and positive.

Love & hugs

Ellie

xx

[lynbo]

Hi Nicki

Thinking of you and Ted, hope your ok xxxx

[Nardobd]

Thanks John, Ellie and Lyn

I phoned the hospital today to check on when Ted's vascular appointment would be. They haven't had a formal referral so don't intend to make one!!!! I have asked ted to speak to the clinic staff when he attends for chemo tomorrow. If necessary I'll step in and start throwing my toys out of the pram (again). We'll get it sorted one way or the other.

Nicki