Thoughts from the PC frontline

[sandraW]

Hi W&M, Just to let you know I am thinking of you too, I remember those feelings only too well, and just how scary it all is fingers crossed for a benign blip too, love sandrax xx

[WifeampMum]

Sandra, many thanks for those thoughts and crossed fingers. Love W&M xxx

[Justamo]

MESSAGE POSTED BY JUSTAMO ON BEHALF OF PROUD WIFE

Dearest W&M

I was a little shocked to read you latest post. I was AND STILL AM convinced that your hubby is one of the lucky ones. You will have noticed from other posts that I am always concerned about the TRENDS of CA19-9. In your hubby’s case, although he has elevated markers, there is nothing really to compare them to, so it does not necessarily mean progression. If they were persistently on the increase that’s a different story but you don’t know that.

I have everything crossed for you that it’s simply a blip and there is a perfectly innocent reason why his markers are currently raised.

On a slightly separate note, you’ve always come across as an independent woman on the forum. Therefore, for you to reach out to us speaks absolute volumes and I for one will be here for you 24/7 whenever you need.

I am currently unable to log in to my account on the forum so have asked Jeni to ask you if it’s okay to pass on personal details. There are some of us forum members over on facebook who have created a very special bond and I think it would help you to join us. We can have the strangest of (non PC) conversations at times that make us laugh no matter what – a welcome relief from planet PC. Also, With facebook, you can normally always reach someone at any time – especially those of us who struggle to sleep at times – and you will find that support invaluable. If we connect outside of this forum, I will give you my mobile number so that you can always call me in the middle of the night- the worst possible time for wobbles when problems seem to magnify.

I feel so very strongly that those on your side of the divide should do it for the ones that were not so lucky, it’s hard to put into words but I hope you will understand what I mean and therefore, whatever you need, whenever you need, I will be here for you.

Now come back to us with some good news please! (((positive vibes))) and nothing other than (((positive vibes))) floating your way right now.

Lots of love

PW xxx

[WifeampMum]

PW, I am not a religious person but in this case the only phrase I can think of that does any justice to what I'm feeling is "bless you"!

I would love to connect on Facebook as I could sure do with a lotta light relief from Planet PC. I might have to get one of my kids to show me how to use it as it's always been a bit of a mystery. But yes, absolutely, I await Jeni's email with eager anticipation.

W&M xx

[WifeampMum]

Oh, and thank you Mo for passing the message on. xx

[Justamo]

Hi, W&M, hope things are OK today. I don't Face or Tweet but if ever I see mention of a group called Planet PC or Blips'R'Us I'll know who's behind it.

Thinking of you,

Love Mo

[Proud Wife]

YAY! I'm back. You can't get rid of me that easily!

W&M I've just messaged Admin again to pass my details onto you. Don't worry about Facebook, I'd never used it before either and only joined once I lost hubby. Can always talk via WhatsApp if that's your preference?

The real Proud Wife looks forward to chatting with the real W&M!

[WifeampMum]

Wonderful to have you back PW and I'm looking out for that message from Admin (no sign of it so far),

W&M xx

[Dandygal76]

When are the results - The scan was Saturday wasn't it? x

[WifeampMum]

Results Friday.

xx

[PCUK Nurse Jeni]

Hi W&M and PW,

I am not sure what has happened, but the email would have come from nurse@ not admin, and it was sent Friday am to you W&M.

Clearly it did not reach you.

However it looks like you are fine with email exchanges, so i shall do this for you!

Once again, apologies about that.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[MaxineR]

Hello W&M

Just a quick message to say I hope it all goes well for the results on Friday.

Best wishes and loads of positive thoughts from our team,

Maxine x

[Proud Wife]

Many thanks Jeni for putting us in contact. I have emailed W & M xx

[WifeampMum]

PW, gremlins must have attacked my email as I haven't received your message. I'll give the nurses a call to get your contact details.

W&M xx

[Proud Wife]

Lovely talking to you!

[WifeampMum]

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]

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]

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

[WifeampMum]

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]

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

[sandraW]

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]

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/study/NCT02923921?recrs=a&cond=Pancreatic+Cancer&cntry1=EU%3AGB&draw=2&rank=11&show_locs=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

[WifeampMum]

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/information-and-support/clinical-trials/find-a-clinical-trial/open-clinical-trials/halo/

and

Star_pac: https://www.pancreaticcancer.org.uk/information-and-support/clinical-trials/find-a-clinical-trial/open-clinical-trials/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

[WifeampMum]

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]

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?