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by Sophy
Sat Dec 01, 2018 1:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Is LARS a foregone conclusion? Anyone doing W&W?
Replies: 29
Views: 5257

Re: Is LARS a foregone conclusion? Anyone doing W&W?

I had my reconnection with a j pouch 7 years ago and for most of that time I have had digestion issues, diarrhoea, constipation, stomach cramps, vomiting. I have gradually eliminated foods that irritate and ended up with a list of things I cut out - No fruit except a few berries and limited amount o...
by Sophy
Sat Nov 17, 2018 7:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 34932

Re: Keytruda....Working for MSS....Mutation Burden is the Key

So pleased to hear this is working for you, wonderful news. Well done and thank you for sharing the information about it. :D
by Sophy
Mon Nov 12, 2018 4:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Xeloda + Avastin Maintenance for NED people
Replies: 7
Views: 1016

Re: Xeloda + Avastin Maintenance for NED people

Not quite the same but I have been taking xeloda plus celecoxib (avastin isn't funded here in New Zealand) for over 4 years, currently on round 70 and still NED. I have minimal side effects, some fatigue, sensitive hands (which may be from oxi 7 years ago) and my oncologist plans for me to stay on t...
by Sophy
Tue Oct 09, 2018 3:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ADAPT and Celebrex - What happened?
Replies: 20
Views: 4601

Re: ADAPT and Celebrex - What happened?

I am still on ADAPT and CT last week shows still NED since last surgery in August 2014.

I have a good quality of life and so will probably carry on with this. I take cimetedine as well.
by Sophy
Tue Oct 09, 2018 3:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)
Replies: 43
Views: 19063

Re: Laser Assisted Pulmonary Metastasectomy (8 to 100 mets)

So happy to hear that, Zephyr, great result! Hope you will be continuing NED :D

I had routine CT last week and I am still NED since last lung laser surgery August 2014. Hope you are doing well too Stevieb.
by Sophy
Thu Jun 14, 2018 4:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hand and foot syndrome
Replies: 9
Views: 1075

Re: Hand and foot syndrome

I have found urea cream and petroleum jelly (vaseline) neutralise the xeloda/5fu side effects when used together.
by Sophy
Sun Jun 03, 2018 7:00 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Bone pain
Replies: 14
Views: 1348

Re: Bone pain

Hi Sara, your mothers pain might be due to radiation damage from rectal cancer treatment. I developed this about 5 years after radiation, my sacral ilia (join between pelvis and spine) started to fracture with normal life, no falls or accidents, and not repair itself. It was very painful and only ly...
by Sophy
Wed May 09, 2018 5:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Still NED, 4.5 years after lung recurrence
Replies: 10
Views: 1363

Still NED, 4.5 years after lung recurrence

CT scan this week showing I am still NED getting on for 4 years since my last lung laser surgery. I feel like a very lucky person :D As always, I am so grateful to those here on the board, especially CB75 and Maia, who shared their knowledge and experiences to get me to get to NED when my medical te...
by Sophy
Wed May 09, 2018 4:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trying Keytruda Off-Label (MSS with a Twist)
Replies: 41
Views: 10608

Re: Trying Keytruda Off-Label (MSS with a Twist)

That's great you have a plan and a helpful onc on your side. Hoping that the Keytruda will work well for you and wishing you and your family all the best
Sophy
by Sophy
Mon Apr 30, 2018 3:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: NEW - From New Zealand - Great folk here
Replies: 13
Views: 2189

Re: NEW - From New Zealand - Great folk here

Hi Steve sorry to hear about your dagnosis but glad they are taking good care of you at Cch hospital and Daffodil House, they are lovely, I spent 8 weeks staying there on my own in 2016. Do PM me if there is anything I can help with, as you can see from my signature I have spent quite a few years be...
by Sophy
Sat Apr 07, 2018 3:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any surgeons doing Laser surgery?
Replies: 22
Views: 9779

Re: Any surgeons doing Laser surgery?

From my research back in 2013 the lung laser is widely used in German hospitals with much success but it seems to be very little known of in other countries. From what members here have said there is one machine in Canada and the one in London which was used in my surgery, otherwise it is a German p...
by Sophy
Thu Mar 29, 2018 5:40 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any surgeons doing Laser surgery?
Replies: 22
Views: 9779

Re: Any surgeons doing Laser surgery?

That is interesting to hear about laser treatment, Tigerpaw. When I spoke with Professor Rolle he told me that he had developed his laser himself because it is just at the right frequency for lung tissue - to cauterise and cut withour damage to surrounding lung tissue. I have not heard of another la...
by Sophy
Sun Mar 25, 2018 12:23 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any surgeons doing Laser surgery?
Replies: 22
Views: 9779

Re: Any surgeons doing Laser surgery?

Zephyr - I found it best to phone instead of email, the number is +44 20 3553 2620, his secretary Justine is very helpful. I was very impressed by Ladas, I think he did a great job and is kindly as well. I would also recommend phoning Coswig instead of emailing, if you or a friend speak German that ...
by Sophy
Fri Jan 26, 2018 4:45 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Back in the fight
Replies: 63
Views: 18691

Re: Back in the fight

Hoping all goes well for your surgery and recovery.
by Sophy
Sun Dec 24, 2017 4:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mymom- clean scan
Replies: 4
Views: 1140

Re: Mymom- clean scan

Congratulations, great news and thanks for sharing

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