Jump to content

So far so good!


Recommended Posts

  • Replies 767
  • Created
  • Last Reply

Top Posters In This Topic

  • Slewis7313

    184

  • J_T

    70

  • jay

    43

  • EmmaR

    42

Top Posters In This Topic

Nothing much to report currently as I am waiting for Prof (removed by moderator) to look at my case notes. I am also keeping an eye on the Tumour Marker to see if it is still creeping up. My Neuropathy is still giving me problems, but not stopping me from doing anything important (I can still trype and do up the buttons!).


I had my new PICC Line fitted yesterday which was fine. It is reassuring to know it is now in the right place and without any kinks in it!


I have been lying low for the last month because of unrelated issues in the Lewis household. I intend however to be more visible from here on in!


The Support Group meeting last week was attended by a small number of people at the local Maggies Centre, but was really useful and we are looking forward to the next meeting. For information, it is at Maggies, Singleton Hospital, Swansea on the last Thursday of the month. We had a really good mix of sufferers, family, supporters and bereaved attendees.


Take care all.


Steve

X

Link to post
Share on other sites

Dear Steve,


I am just catching up here on the forum. It's good to hear that you are doing well and the new PICC line was fitted with no problem.


Take care,

Susanna x

Link to post
Share on other sites

Sorry Steve,


Not my neck of the woods but I always recommend travelodges. There are loads in London and one in Fulham which might not be too far for you. Do a search on the hospital's postcode is probably best, and search for any discount "voucher" on line before booking. Try money supermarket or voucher codes - you might find a voucher code to reduce cost a little.


Good luck!


Cathy xx

Link to post
Share on other sites

My first choice round there is the Grange Fitzrovia, usually good value. You can get good deals on the Manderville, which is really lovely. For very cheap and cheerful there is the Travelodge, Marylebone, and the Park Plaza Sherlock Holmes just round the corner, is supposed to be good but I haven't actually tried it.

Nikki

Link to post
Share on other sites

It's been a strange old day today! I had my 17th chemo session with my dosage back up to 100%, but still without Oxaliplatin. I had dropped to 80% because of my paranoia over Neuropathy, but we are all now agreed that it was due exclusively to the Oxaliplatin. My tumour marker has risen again to 274, which is not particularly high, but this is the third increase in a row and has increased more than the last 2 tests. But as stated, I have been on 80% and a 3 week regime so maybe these 2 factors have not helped.


But... On a positive front, the chemo was uneventful, the Neuropathy is improving and I now have an appointment with Professor next Thursday (26th). My Liver Mets have been given a real push back with Folfirinox, so I assume we will be looking at NanoKnife for the primary site?! In line with Carl and Rob's experiences, Professor Secretary suggested I avoid the word 'NanoKnife' for now when speaking to my insurance company!


I'll keep you posted on developments!


Steve

X

Link to post
Share on other sites
  • 2 weeks later...

Rob (and everyone else), apologies for not updating sooner but I found myself looking at all of the recent posts, sad losses, brave people, amazing messages of support and simply did not know where to start. My thoughts are with all those who have been through the most difficult of times recently, their courage and continued support to the wider community, whilst dealing with their own grief, issues and challenges. My situation seems so alien to many that it seems almost wrong to share, but I know the aforementioned support has always been there for me and that good news is also welcome..... So here goes:


The Consultation with Professor took place yesterday morning (with Margaret, Holly & Paige in toe of course). The meeting could not have gone better. He is such a charming, professional and approachable character that we were immediately at ease with him. He recalled that we have been in touch on-and-off since 2013 and commented on my well being two years post diagnosis. We discussed my latest PET Scan, looked at the pictures with detailed explanations as to the various elements and how these fitted to the associated report. The Scan shows (thanks to Folfirinox) no more METs visible in my Liver and a primary tumour measuring 2.7cm. Apparently, the procedure works best on tumours smaller than 3cm, so another tick in the box. My tumour marker has crept up recently and the PET scan is now two months old, so he suggested an MRI scan as soon as possible to confirm what is going on in my Liver before deciding on a course of action. If the Liver is clear, we go straight for the primary Pancreas site, but if not we attack anything found in the Liver and then hit the Pancreas. Basically, I am a prime candidate for the procedure(s) and we will arrange for my admission as soon as possible. I called the procedure NanoKnife, but he refers to it with a different (technical) code.


I emailed my Oncologist this morning regarding an MRI scan and the paperwork was already submitted this afternoon (typical of my Oncologist). I feel fortunate to have responded so well to Folfirinox and to have this opportunity to attack the disease from another angle with the assistance of Professor and my Oncologist.


I'll keep you posted.


Steve

X

Link to post
Share on other sites

That's great news Steve, some very welcome news in the light of the past few days, so all fingers crossed for the MRI and that the different code procedure can go ahead asap, take care sandrax xx

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue. By using our forums you agree to our Terms of Use and Privacy Policy.