katja
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See this is one of the ridiculous things about the nhs-the right arm doesn’t know or care what the left arm’s doing. It makes me mad when this whole process could be made easier for your dad. You’re really pulling together and I bet your dad is so proud of you all. Is your mum handling things any better?
Since your dad can’t do the physical stuff any more is there something he could do to stop him feeling useless? I always struggle to stop my dad from doing heavy lifting even when he’d just had surgery, but I learnt to ask him to help in a different way, reading to my baby, taking photos, doing things online. Gavin’s dad had his horse riding, perhaps your dad will have to visit b and q once a week?
Thinking of you all and hoping you can make some happy memories during this sad time xHi Johanna
Take a look at this trial, which established the standard of care in the UK. Other ABC trials are happening.http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=30777
Kate
Again for UK members, my dad was diagnosed at Bradford Royal Infirmary and swiftly referred to Professor Lodge’s team at St James in Leeds.
Mr Smith and Mr Menon are both highly recommended for the Whipple; Prof Lodge does the liver transplants.We can not speak highly enough of Mr Menon – he did a wonderful job on my dad, hardly any complications to speak of and visited him every day for at least a week. He keeps him under surgical observation every 3 months even though my dad is also under oncology as ‘he’s one of our success stories’.
Mr D Swinton is my dad’s oncologist, and again is highly recommended. He really knows his stuff – with a very calm manner.
Schrums4,
I notice you have posted a few times but not your full story? It sounds like maybe you could post in our good news/what’s working section – is your husband currently doing well?
Thanks for joining us!
KateHighsmith,
Pam’s dad is sadly in hospice care since she last posted on this thread – she has been posting recently in the palliative care and grief management area of the site.
If you use the search function at the top you’ll find lots of people posting about different chemo combinations – gem/cis seems to be the standard of care for palliative treatment.
KateHi Kavita1 and kmiller,
This post is quite old from CarolE but she has posted more recently and had Xeloda after her resection and recurrence – she had posted about good results with Xeloda. I’m not sure what kind of radiation though.
My dad had a successful resection in Jan this year and then completed a trial of Xeloda as adjuvant therapy (in the UK the standard approach after successful resection is to do nothing – wait and see). He tolerated the Xeloda very well and had a clear scan at the end of it. Now we wait and see what the scan shows when he’s been of it for 3 months.
Kmiller did you find any trials that your sister might be eligible for? There is ABC03, which may be recruiting soon?
KateLinda,
Glad that Kevin is going to be looked after well while you’re away, and hoping you have a safe and productive trip. Let us know what you decide about the concert.
I’m really hoping the Dr at Mayo will grab hold of this by the horns and start doing something helpful for you. You should not have to work so hard at being your own advocate/doctor!
KateRdh,
my dad’s case was exactly the same as yours. He had his whipple (clean margins, 7 nodes with microscopic traces) and entered the bilcap trial to test xeloda as adjuvant therapy. Standard treatment in uk would have been just ‘wait and see’. We are glad he got the chemo on a trial but then who knows whether it’ll work?
It’s been a year since my dad started looking a little yellow and he’s now back to work, and really valuing each day (we all are).
Please feel free to ask any questions. Congratulations to your dad, I hope he is recovering well from the whipple?
KateThank you Dr Canady
As you may be aware there are plenty of threads on this board about you. It would be good to read some of your academic research work, and some testimonials perhaps.
Kind regards
KateGreat to hear that your dad is already a fifteen year survivor, sad though to hear it has returned. What treatment has he had/will he be having? A positive attitude is half the battle – we’ll be hoping to hear more good news about your dad.
KateDr Canady
It’s more than a year since Blehmegin was trying to contact you. I’m sure you’ll understand that the situation with her brother is very different now.
KateThis thread has been like having a massive hug and being told it’s going to be ok. A good friend died recently of cancer on a surgical ward, it wasn’t peaceful because the nurses didn’t really deal with it properly. I suppose Hospice being involved almost always makes things calmer. I love the honeymoon way of looking at things, just hope I can try to hold that when the time comes. I wonder if it takes a special kind of person to deal with it in that way. I’m no natural nurse.
I’m going to print this off and keep it-thank you all xLainy’s right Tom, you’re a great writer and sound like such a positive person. I bet Ben is glad to have you around (esp to whizz off to the drugstore for him)
Enjoy your halloween party! We are getting so much more like the US here in the UK, pumpkins, ghosts, cobwebs and everything bright orange!Thank you for that Kathy,
It had worried me too, both for Margaret and myself, but you are right, Hospice will guide as to what is best.
Kate
