Topic: Hi from N.Ireland

Hi All,

My name

Re: Hi from N.Ireland

Alex,

Unfortunately I don't have any answers for you, but I want to welcome you to the site. Although no one here really wanted to have a reason to be here, we are all greatful that we are. I am sure that someone will be able to answer some of your concerns shortly.  I am glad you found the site early on. I wish I had found it sooner, but am so glad I did find it. The people here have so much to share & are willing to do so. All you need to do is ask.  Everyone is so supportive & it has truely been comforting to me to be able to come here for information, support, guidence and sometimes just to vent my anger & frustrations.  There are several members in the UK & I am sure they will be able to help you out.  I will be hoping that you can sort some of these things out for your Mum.  Wishing you both the best on your journey with this horrible, unpredictable disease. Take care. I will keep you both in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hi from N.Ireland

Hi Alex!
I'd like to join Darla in welcoming you to our site.  I don't know the answers either, but you can always use the search function on the site to see if anyone has posted anything about peritoneal nodules before.

I know my insurance company (Blue Cross/Shield) has turned down Tarceva for me.

Wishing for the best for you and your Mum!

~Lisa

Re: Hi from N.Ireland

Guys, thank-you for your kind words.

Lisa - re. Tarceva. It does seem to be an insurance lottery in the US from what I

Re: Hi from N.Ireland

Alex-

Thought I'd say hello! I also can't offer answers but thought I would greet you anyway. ;-)

This is a tricky disease. My Grandmother was given 4-12 weeks and she passed in about 8 weeks. ( She opted for no treatment. 83 diabetic with a heart condition) That being said, there have been pleanty of people that have had much longer than what they were told by the medical profession. People used to always ask " How much time does she have?" and I'd say "She's not a carton of milk with an expiration date". ( I'd say in in a pleasant tone not rude or anything...most to the time ;-) )

Everybody is different. Information, hope and kindness helps.

Much love! If you need anything let me know!
T

Re: Hi from N.Ireland

Dear Alex,
Here is my advice based on months of research into the latest treatments on offer in the UK when my husband, Anthony was diagnosed with the disease in June 2007.
   1. They don't tend to offer surgery when the cancer has spread but will keep the option under review in case a treatment proves effective in reducing the tumours.
   2. You have done the right thing in getting your mum on treatment while looking around for other options.
   3. Don't allow any delays between treatments.
   4. Make sure she gets regular ct scans - at least every 3 months and insist on the results within a few days.
    5. Trust the advice of Dr Wasan at Hammersmith.
    6. Contact Dr Spicer at Guys. He does very interesting Phase 1 trials. Anthony was offered one involving Avastin, Taxol and a new drug called BIBW2992. It takes about 4-6 weeks from the initial phone call and referral from your doctor to get started on the trial. Unfortunately, for my darling husband, his cancer became very aggressive during this wait ( he wasn't having any other treatment at the time) and he never did get on the trial.
         I wish you and your mum all the luck in the world. Anthony and I were never lucky at any point in this awful disease but others fare much better.
            Best wishes,
                 Pauline

Re: Hi from N.Ireland

Hello Alex

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hi from N.Ireland

Hi guys,

Once again, thanks very much for your warmth and support.

Pauline: I read your post with great interest. We have indeed seen Dr Wasan, and it

Re: Hi from N.Ireland

Hi Alex,
I think it's pretty standard to have a two week delay in treatment from the time of the first scan to when chemo begins.  I had a 4 week delay in order for me to get healthy enough to withstand the chemo.  I was extremely jaundiced, and the delay allowed the jaundice to clear up (via percutaneous drain).  All I can say is my experience.

Re: Hi from N.Ireland

Thanks for your quick reply Lisa, and your post is reassuring.

Can I ask how your chemo responded at second scan (first treatment review)? Sorry, I should really search the site because you

Re: Hi from N.Ireland

Hi Alex,
My  oncologist didn't say whether or not he accounted for the four week delay.  My second scan was three months later, and after radiation and chemo showed amost a 50% reduction in tumor size.

That reduction has been the extent of the tumor shrinkage, and has lasted for about a year now.  My oncologist is very pleased that it's stable.  It went from 6 cm to a little less than 3 cm. 

In March 08 a resection was attempted, but due to involvement of the inferior vena cava, the resection was unsuccessful.  I did recover very quickly after surgery and (despite a 16 inch scar) went back to work two weeks post surgery.

God bless,
Lisa

Re: Hi from N.Ireland

Alex,
        I don't think you can worry too much about the 2 week gap between base line ct and start of chemo. Yes, it would be ideal to start chemo immediately after the scan but you have done really well in getting a second opinion as well. I would suggest you give the combination treatment a chance while getting prepared for the next treatment. Anthony had the same combination chemo and, although it didn't shrink the tumour, it also didn't progress much at all during his 6 months on this. Of course, it is impossible to know if the chemo held it stable or whether the disease was just very indolent at this point.
             Best wishes
                   Pauline