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Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Wed Sep 13, 2017 12:02 pm

A quick update. Hubby has a suspected recurrence - one small lung met and an enlarged lymph node in the lung. He's due to have a PET scan and biopsy next week to confirm the diagnosis 'though because of the raised CA19-9 (the latest reading is in the 400s) his oncologist is pretty sure the PC is back. Treatment likely to be Gem/Abraxane with possible second-line folfirinox. Our oncologist is investigating trials too and I'm looking into genomic profiling.
So we are back on the dreaded rollercoaster after 19 months of relative post-Whipple calm.
Best wishes to all
W&M xx

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Wed Sep 20, 2017 12:30 am

Hey lovely. I know people are messaging offline now you are in touch but it so important that we keep vocal and raise awareness, as well as support you as you have us and the others joining the PC club. I have said to you that out of any time I remember it is that terminal diagnosis that was and still is the worst moment of my life.. the most helpless time. It surpasses everything and I found it harder than dad dying? They say the grief starts beforehand and don't get me wrong.. I have an intense burning grieving now but not as raw as terminal diagnosis. I hope hubby will be the unique lucky one but the grieving truly starts with the 'palliative care' scenario. I would really consider your options as we have pancreatic problems in my family in general and I think if I ever get it and was stage 4 I might just go on holiday. Hindsight is amazing and wonderful though. Love you loads. x

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Wed Sep 20, 2017 12:35 am

I think what I wanted to say is.. it really is pants and I don't welcome you at all to our club. whatever hubby decides - we are right beside you. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Wed Sep 20, 2017 10:16 am

Thank you, as always DG, for your honesty and perspective. I'm so grateful for your support, it really means a lot.

Today we are heading to London for a SIBO test. SIBO meaning "Small intestinal bacterial overgrowth". Hubby has been very burpy lately and his hospital dietitian thinks he has classic symptoms of this condition, which apparently is very common after a Whipple. It can be treated with antibiotics. Hopefully the test will be positive, the antibiotics work and the burping eases before chemo starts.

I'm feeling incredibly frustrated that all the tests are taking so long. The biopsy is not until next Wednesday and the oncology follow up is 6 October. I hate the thought that the cancer is back and he isn't on treatment. Patience is a virtue but I'm rubbish at it.

Much love DG

W&M xxxx

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: Thoughts from the PC frontline

Postby Quickasyoucan » Wed Sep 20, 2017 10:50 am

Sending you all good thoughts in your continued fight w&m. X

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

Re: Thoughts from the PC frontline

Postby sandraW » Thu Sep 21, 2017 9:27 am

W&M, sorry to hear your news, why on earth would you want to be patient you want those test now if not yesterday, its all so bloody scary, and I remember those feeling so well.
I hope you get the diagnosis so you can get the burping sorted soon, and then that the treatment works quickly and hubby can get on the chemo if that's what's needed, sorry you are back on the dreaded roller coaster, but hold on tight, take cake love sandrax

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: Thoughts from the PC frontline

Postby stepuha » Thu Sep 21, 2017 1:46 pm

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 I think you have all the chances of treating these successfully.
Has chemoradiation been considered? Perhaps SBRT (which can be done over five days) followed by Gem/Abraxane? I am a supporter of hitting it from several angles if possible (even though I never actually had a chance of doing it myself).
Regarding trials, the following trial could be interesting if your husband can qualify (I am sorry I don't know your husband's full history of treatments): https://clinicaltrials.gov/ct2/show/stu ... ocs=Y#locn
You know exactly what to do and what to look for and your husband is very lucky to have you as his advocate.
Sending you love and strength.
stepuha

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Thu Sep 21, 2017 7:06 pm

Dear Stepuha
Thank you so much for your post, your good wishes and for all the info.

I hadn't thought of chemo-radiation and I'll certainly investigate it as an option. Before hubby's Whipple he had chemo-radiation on his pancreas and I suppose it's possible that would preclude him having it on his chest (too much zapping?) but I'll ask at his next clinic appointment.

Unfortunately he's not currently eligible for the trial that you refer to as he hasn't had first-line chemo yet for his recurrence, but he might become eligible so I'll keep that info in mind for the future. The 2 trials that I thought might be suitable for hubby are:
HALO: https://www.pancreaticcancer.org.uk/inf ... ials/halo/
and
Star_pac: https://www.pancreaticcancer.org.uk/inf ... /star_pac/
Our oncologist is making enquiries on our behalf but she's warned us that his prior treatments will probably rule him out.

Stepuha, I was very sorry to read on another thread that your pain had become more troublesome for a while and I hope that you're able to manage on paracetamol for a long time to come.

Sending love, hugs and masses of positive vibes your way

W&M xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Fri Oct 20, 2017 12:42 pm

Hi all,

It's been a month since I last posted and I've got some good and bad news to report.

The good news is that treatment for hubby's recurrence should start very soon. The bad news is that the recurrence is now official since his lung biopsy proved positive for PC. We found this out on Tuesday, then on Wednesday we visited a London clinic to discuss his participation in the Halo trial. He has a 40% chance of having the genetic mutation that will qualify him for this trial and we should find out if he qualifies within the next fortnight.

If he's not eligible for Halo he'll be treated at his usual hospital with Gemcitabine + Abraxane. This is a new regime for him (previously he's had Folfirinox and Gemcitabine) and hopefully it will give the disease a good bashing. Time will tell.

Sending my very best wishes to everyone.

W&M xx

violetmia
Posts: 10
Joined: Sun Apr 02, 2017 10:49 pm

Re: Thoughts from the PC frontline

Postby violetmia » Fri Oct 20, 2017 4:59 pm

We have just been told that Abraxane is not funded by the NHS if the patient has already had FOLFIRINOX.
Has anyone had Abraxane on the NHS after having had FOLFIRINOX first?

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Fri Oct 20, 2017 8:02 pm

Hi Violetmia,
The NICE recommendation for Abraxane is that it can only be given for previously untreated metastatic pc so patients who have already had Folfirinox for metastatic cancer aren't eligible. In my husband's case the Folfirinox was given before he was metastatic. His oncologist is therefore going to apply for him to have Abraxane.
I feel very strongly that it should also be recommended for second line therapy and am so sorry that (from what I understand) your husband doesn't qualify.
W&M xx

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Sat Oct 21, 2017 2:42 am

That is not good at all - From my extensive research some people respond well to furry fox more than Abraxane and visa versa - the mutations are so many. I am disappointed that the guidelines are so restrictive because you know quite early on in chemo if it isn't going to work at all. I had to fight to get Folfirinox as a 2nd line treatment and even then they could only do it because the first line treatment was not NHS and so they could interpret the guidelines a bit more fluidly. Obviously dad did not make it that far in the quick turn of events.

Anyway, sorry to jump on the treatment bandwagon W&M. I have all my fingers crossed that he will be eligible - have you looked into other trials? They do seem to be targeting the genetic mutations now. I very much wish I had pulled dad out earlier and got the biopsy done and moved him to the old fox. But, that is to be expected and hindsight may or may not have made a difference.

PW will tell you - out of all of the people that did this at the time we did this I was so routing for you guys to be the success story. I had tears in the office when I heard the news of the spread but one day someone is going to beat this blasted thing and I wish with all my heart you guys will be the first and you will get to the trial. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Tue Nov 07, 2017 2:34 pm

I said not long ago that patience wasn’t one of my strengths. I think I’m getting better at it which is just as well as we’re STILL waiting for hubby’s treatment to start.

We expected that by now the trial people would know whether he had the genetic mutation that qualified him for the HALO trial. But after a 2 week wait to see what grew in the test tube they told us that his tissue sample didn’t contain any cancer, so a further sample is needed. Trouble is, we were assured that his first biopsy retrieved as much material as possible, so we’re not confident that a second biopsy will be any more conclusive.

Anyway, on the recommendation of the trial people, hubby had another CT scan yesterday. If his lung met shows growth they will schedule another biopsy. If it doesn’t, I guess we’ll have to wave goodbye to the trial and head for standard treatment.

In the meantime hubby is feeling remarkably well considering. On Planet PC you can’t get much better than that so I’m currently feeling blessed.

Love to all who happen upon this post,

W&M xx

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Mon Nov 20, 2017 11:20 am

I so feel your pain. This in between time is just awful and everything is just so slow. It is still awful it is not treated as a medical emergency.

I am interested to know what technique they used for the biopsy - was it EUP or needle through the skin.

Stay strong lovely x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Mon Nov 20, 2017 1:07 pm

Hi DG,

The lung nodule biopsy was needle through the skin. We were v impressed by the consultant who did it, he really took his time explaining everything before and after the procedure. In fact he’s won awards for the new technique that he used on hubby. Details here:

https://www.royalfree.nhs.uk/news-media ... cuts-wait/

He knew that we wanted enough tissue taken for genomic profiling and he assured us that he took as much as he could.

We now have the results of the latest CT scan. The lung nodule has grown, but only slightly. This probably means that we’ll give up on the trial as there’s no point in trying another biopsy yet and we’re keen to get him started on treatment. Hubby’s case will be discussed at an MDT meeting tomorrow, and we see his oncologist on Friday for an update and hopefully an action plan.