A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

JED
Posts: 12
Joined: Sat Jan 23, 2016 11:22 am

Re: My journey so far.

Postby JED » Wed May 04, 2016 9:26 am

Been a while since I've been on here. Just had my latest CT Scan which didn't show any reduction this time. I am at least happy there has been no new growth. My CA19-9 is down to 28 which I'm pleased with. The results were reviewed with the MDT (Mutli-Disciplinary Team) but still no option of surgery. Just started my 6th Cycle of Chemo. Generally I'm feeling well apart from the couple of days following Chemo and the tingling sensation in my left foot.

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: My journey so far.

Postby sandraW » Wed May 04, 2016 12:25 pm

Hi Jed,
Great news about the CA19's and good that you are coping okay with your treatment and feeling pretty much okay. My husband had Folfirinox, he suffered with neuropathy too, his was worse in one foot than in the other. I hope you continue to feel well and though we all want reduction stable is good too, take care sandrax

JED
Posts: 12
Joined: Sat Jan 23, 2016 11:22 am

Re: My journey so far.

Postby JED » Thu Sep 08, 2016 12:26 pm

Been a few months since my last post, everything seems be going ok considering.

My last CT Scan was in July which showed tumor reduction and classed this as 'stable disease'. Just had 5 weeks off my Chemo due to suffering an infection early August and had a holiday booked to Florida with the Family. We had a fantastic time, felt like my old self again. Feeling so much better and stronger. My hair has even started to grow back though a bit patchy. My CA199 crept up from 26 to 96 during the break. Started my 10th Cycle of Chemo yesterday which will hopefully knock it back down.

RLF
Posts: 223
Joined: Tue Nov 19, 2013 9:30 am

Re: My journey so far.

Postby RLF » Thu Sep 08, 2016 3:43 pm

Hi Jed, I come on here less than I used to but just read through your story and wow you've done so well! I'm happy the Abraxane is kicking some ass for you and hopefully after the break on holiday your body will have more energy to keep on fighting. Did you ever hear about the Nanoknife? I'm not sure where in the U.K. You are but I know now here in Leeds they have one on the the NHS at St James. Because of the peritoneal involvement they might not want to do it but as you have such a low tumour count and you're so young they may be more willing to give it a try for you.

Hope you continue to improve and keep us updated.

Rob

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: My journey so far.

Postby Dandygal76 » Thu Sep 08, 2016 7:08 pm

Hi Jed. Those markers sure have gone down though from your initial diagnosis so you must have been pleased even though I know they are creeping up now. I think they can vary for other reasons so fingers crossed it is not sinister.

I am glad you got to spend some lovely quality time with your family in Florida. I cannot wait until my family get the chance to have a nice break with dad.

Much love to you and your family. x

JED
Posts: 12
Joined: Sat Jan 23, 2016 11:22 am

Re: My journey so far.

Postby JED » Fri Sep 09, 2016 4:50 pm

Hi Rob, Dandygal76, thanks for the replies.

I have enquired at the Princess Grace Hospital about the Nanoknife procedure they have a requested a copy of my last CT scan. See what happens, fingers crossed.

My CA199 does tend to go up 10-20 during my week off Chemo, so I am not too worried at the moment now I'm back on the Chemo. I have my CA199 checked every 2 weeks

Dandygal, Hope you get a nice break with your Dad soon.

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: My journey so far.

Postby Ruthus » Mon Sep 12, 2016 12:16 pm

Hi JED

I have not said hello yet and have been meaning too. You have done brilliantly with treatment and what a great response. It's lovely to have a chemo break isn't it. I loved having no chemo over the summer and noticed my hair got really thick again.
I hope you have a positive response from the Professor in London. He is a lovely man and am sure will respond quickly. Fingers crossed you are a canditate for nanoknife.

Ruth x

JED
Posts: 12
Joined: Sat Jan 23, 2016 11:22 am

Re: My journey so far.

Postby JED » Tue Sep 13, 2016 9:07 pm

Hi Ruth, nice to hear from you. I am very pleased with my response to treatment. I often wonder how I can feel so well but be so ill. Hopefully I will continue to feel this good for a longtime yet.

Have you had the nanoknife procedure yourself?

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: My journey so far.

Postby Dandygal76 » Wed Sep 14, 2016 8:52 am

Hey JED, did you get a response from professor nano? I am glad you are feeling very positive, long may it continue. x

JED
Posts: 12
Joined: Sat Jan 23, 2016 11:22 am

Re: My journey so far.

Postby JED » Sun Sep 18, 2016 1:46 pm

Hi Dandygal, I've not had a response yet. Need to followup with my Oncologist this week to make sure he sent them my CT Scan.

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: My journey so far.

Postby Ruthus » Wed Sep 21, 2016 10:23 am

Sorry for late reply JED

No I've not had the nanoknife although I was deemed suitable for the procedure when I saw Prof nanoknife in April. I most definitely would have gone ahead with it but then I heard from Germany who told me they thought they could remove the tumour's through surgery so I went with that option instead.

I found Prof nanoknife very nice and I would have been more than confident in having the procedure done by him. I particularly liked the fact that it was so non invasive, you could continue with chemo and recovery time so quick. I am currently in contact with Prof nanoknife again with regards to viewing my latest scans to see whether liver ablation would be possible on the two measured tumour's in my liver.

It might be that I need to finish three cycles of Gemcap and have three month repeat CT scan which would be at start of November before ablation is considered as obviously the chemo may have an effect on the existing tumour's. I have requested the Prof casts his eyes over my initial CT and MRI scans taken last month at the start of Gemcap just to have his opinion on whether the tumour's are in areas of the liver which are amenable to ablation and to have his opinion. I have been in contact with him and he's requested my scans are sent to him for review. I've asked my Consultant to send the latest scans to Prof nanoknife so will have to wait and see. In the meantime I am on the second cycle of Gemcap. I am tolerating this very well.

I know what you mean re having such a serious illness yet feeling well. We are in Spain for a few days and we cycled 50 miles from our place to the coast on road bikes yesterday. It was fantastic!

I hope you hear some news soon JED and continue to feel well.
Ruth x

JED
Posts: 12
Joined: Sat Jan 23, 2016 11:22 am

Re: My journey so far.

Postby JED » Wed Oct 19, 2016 2:02 pm

Had my latest CT Scan results which I'm very pleased about.  My peritoneum tumors are no longer visible and the pancreas tumor has has gone from 4.5cm to no longer being measurable as it's mostly scar tissue. My CA19-9 is at 49.  Still waiting on my CT to be reviewed by Professor Leen for the Nanoknife procedure.

Has anyone been cured with gemcitabine and abraxane. Also whats the longest anyone has been on this Chemo.

PCUK Nurse Jeni
Posts: 1021
Joined: Mon Jun 14, 2010 1:30 pm

Re: My journey so far.

Postby PCUK Nurse Jeni » Wed Oct 19, 2016 5:06 pm

Hello JED,

This is great news - congratulations!

Jeni.

Nursing Team.

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: My journey so far.

Postby Veema » Wed Oct 19, 2016 9:28 pm

Wow! That's fantastic! Well done!

Vx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: My journey so far.

Postby Ruthus » Wed Oct 19, 2016 10:12 pm

That's fantastic news JED. Out of interest which chemotherapy regime have you been on? It looks like gemcitabine and Abraxane. If so are you in Scotland or Wales or is it part of a trial as Abraxane not available in England on NHS?
I'm not sure if anyone has been cured with gemcitabine or Abraxane. I also read different stories with regards to length of treatments. I think factors include response to treatment and if someone is responding well to treatment it maybe continued.

Is the plan to continue with chemotherapy? I wish you a continued good response to treatment
Ruth