Search found 93 matches

by stepuha
Thu Nov 16, 2017 1:16 pm
Forum: Patient Experience Forum
Topic: 36 yo adv pancr cancer patient treated in France
Replies: 172
Views: 159770

Re: 36 yo adv pancr cancer patient treated in France

Hi All, Just a quick update. I am in hospital again. Checked myself in on Monday because of the growing belly and difficulties with breathing. This time I went to the local hospital and was very happy with the choice. Everybody is lovely here and very much focused on palliative care. They did a hear...
by stepuha
Wed Nov 08, 2017 4:58 pm
Forum: Patient Experience Forum
Topic: 36 yo adv pancr cancer patient treated in France
Replies: 172
Views: 159770

Re: 36 yo adv pancr cancer patient treated in France

Good evening to all patients and carers. First of all, thank you all so much for your lovely comments and all your support. It is very heartwarming to read your messages. I am sorry I don’t reply to each of them. Here is what happened during the last few weeks: On Monday 23rd I saw my original consu...
by stepuha
Fri Oct 13, 2017 4:19 pm
Forum: Patient Experience Forum
Topic: 36 yo adv pancr cancer patient treated in France
Replies: 172
Views: 159770

Re: 36 yo adv pancr cancer patient treated in France

Hello All, It is time to update you on my progress. Unfortunately it is not good news. I had a scan earlier today. The scan showed a considerable progression of the tumours. It also showed a thrombosis on the level of my portacath. An urgent meeting was arranged with the clinical trial doctor who co...
by stepuha
Thu Sep 21, 2017 2:28 pm
Forum: Patient Experience Forum
Topic: Stephen's Story
Replies: 127
Views: 120742

Re: Stephen's Story

Dear Sandie,
I am sorry to hear about Stephen's passing but glad that it was peaceful and Stephen was surrounded by family.
Sending you love and strength,
stepuha
by stepuha
Thu Sep 21, 2017 2:22 pm
Forum: Patient Experience Forum
Topic: Speed of diagnosis is scary!
Replies: 9
Views: 15434

Re: Speed of diagnosis is scary!

Dear Ann, I am sorry about your diagnosis. Welcome to the forum. As bad as it sounds, being diagnosed within two weeks is actually a good thing, it means that you can start treatment sooner instead of going through tests for months. I am 37 with two young children and today is 11 months since my dia...
by stepuha
Thu Sep 21, 2017 2:06 pm
Forum: Family, friends and carers
Topic: Thanks for sharing your experiences . . .
Replies: 759
Views: 286751

Re: Thanks for sharing your experiences . . .

Dear Mo, Your Macmillan nurse sounds lovely. We don't have such support here and every time I call the emergency number I feel like I have to go through the whole story and they still can't give me any answers. They just send me straight to the nearest emergency. Luckily we have not had to use their...
by stepuha
Thu Sep 21, 2017 1:46 pm
Forum: Family, friends and carers
Topic: Thoughts from the PC frontline
Replies: 187
Views: 119223

Re: Thoughts from the PC frontline

Dear W&M, I am sorry to hear your news and I am sorry you have to wait for such a long time. Waiting is the worst. It just makes our anxiety rocket. One thing to mention, I have now seen in several articles that lung mets are very rarely a cause of death of PC patients, so although this is bad news ...
by stepuha
Mon Sep 04, 2017 3:56 pm
Forum: Patient Experience Forum
Topic: 36 yo adv pancr cancer patient treated in France
Replies: 172
Views: 159770

Re: 36 yo adv pancr cancer patient treated in France

Hello All, Many thanks to Jeni and Veema for posting on my thread. Veema, the pain is in the right shoulder under the port. I also think that the pain is caused by liver mets and the doctor seems to think so too although the pain increases if I go swimming, for example, and that doesn't make much se...
by stepuha
Sun Aug 13, 2017 7:55 pm
Forum: Patient Experience Forum
Topic: 36 yo adv pancr cancer patient treated in France
Replies: 172
Views: 159770

Re: 36 yo adv pancr cancer patient treated in France

Many thanks W&M and PW! Friday's results were as expected. Liver mets grew by 50% by RECIST. Chemo is not working and has been stopped. I have been referred to Phase 1 clinical trial team. The trial with Atezolizumab is expected to start in September and I can't wait so long, especially since they n...
by stepuha
Wed Aug 09, 2017 3:01 pm
Forum: Patient Experience Forum
Topic: 36 yo adv pancr cancer patient treated in France
Replies: 172
Views: 159770

Re: 36 yo adv pancr cancer patient treated in France

Hello All, It has been a while since I posted. I have not been a very regular visitor to the forum recently. I hope everyone is making the most of the summer. Here is what happened since the last update: I had a very helpful chat with DG. Thank you DG! Some of the points we discussed: - I am trying ...
by stepuha
Sat Jul 22, 2017 5:50 pm
Forum: Advanced pancreatic cancer
Topic: Molecular Profiling
Replies: 4
Views: 9241

Re: Molecular Profiling

Hello Violetmia, I had three biopsies done (one on the pancreas at the time of diagnosis, one on the liver straight after and the last one - three weeks ago). The first two biopsies did not provide enough material for profiling. PC is a solid tumour so lack of material is a common problem. I am stil...
by stepuha
Wed Jul 19, 2017 1:14 pm
Forum: Patient Experience Forum
Topic: Mum of 42 recently diagnosed inoperable PC
Replies: 315
Views: 176814

Re: Mum of 42 recently diagnosed inoperable PC

Dear Tony, Thank you very much for letting us know what happened. Ruth was a wonder woman indeed. I can only hope that when my time comes it will be short and painless. I also love the idea of the bench and cards. It is comforting to see that you are doing well as a family. As much as I worry about ...
by stepuha
Sun Jul 09, 2017 2:51 pm
Forum: Patient Experience Forum
Topic: 36 yo adv pancr cancer patient treated in France
Replies: 172
Views: 159770

Re: 36 yo adv pancr cancer patient treated in France

Dear Jane, Thank you for posting on my thread. It sounds like you had a rough start to the PC journey but I am happy to hear that you are feeling better and ready to attack the next session of Folfirinox. Veema is right that CA19-9 is an indication only and should be considered in combination with t...
by stepuha
Wed Jul 05, 2017 8:11 am
Forum: Patient Experience Forum
Topic: Mum of 42 recently diagnosed inoperable PC
Replies: 315
Views: 176814

Re: Mum of 42 recently diagnosed inoperable PC

Dear Tony, I am sorry to bother you whilst you are recovering from the loss of Ruth. Please disregard my request if you are not ready. You mentioned you would let us know what had happened to Ruth in the end. I don't want to be pushy but I am at crossroads at the moment and I am getting a lot of con...
by stepuha
Sun Jul 02, 2017 10:08 pm
Forum: Patient Experience Forum
Topic: 36 yo adv pancr cancer patient treated in France
Replies: 172
Views: 159770

Re: 36 yo adv pancr cancer patient treated in France

Thank you for thinking of me, lovely ladies. You are very sweet. I am feeling a bit better. I slept a lot after getting home from the hospital. My liver is still sore from the biopsy. I think it will take a week to get back to normal. I spent the weekend with friends and family: a lot of friendly ba...

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