Thoughts from the PC frontline

[WifeampMum]

Hi PW

Yes, a serial rise in CA19-9 that represents progression may be 2-6 months ahead of that progression showing up on scans.

I think that oncologists must be well aware of this (it's certainly well documented in the PC literature). I also think you're right about the dead man walking attitude.

The following is the most expert opinion that I could find on the web about the use of CA19-9 for detecting recurrence in resected patients....sadly it's as clear as mud.

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Tumor markers in pancreatic cancer: a European Group on Tumor Markers (EGTM) status report

https://academic.oup.com/annonc/article/21/3/441/166042/Tumor-markers-in-pancreatic-cancer-a-European

"A number of studies have shown that serial determinations of CA 19-9 can detect recurrent/metastatic pancreatic cancer several months before finding clinical or radiological evidence of disease. The clinical value of this lead time, however, is unclear, i.e. whether its availability impacts on patient outcome or increases quality of life. Despite this, the NACB panel recommends that CA 19-9 should be used in the follow-up of patients after potentially curative surgery for pancreatic cancer (Sturgeon et al., unpublished data). The panel, however, caution that the value of initiating therapy based on rising CA 19-9 levels remains to be demonstrated. The panel did not indicate how frequently CA 19-9 should be measured or how a clinically significant increase was defined. According to the American Society of Clinical Oncology (ASCO) guidelines, CA 19-9 measurements by themselves cannot provide definite evidence of disease recurrence without confirmation by imaging for clinical findings and/or biopsy."

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Love

W&M xx

[Veema]

Proud Wife wrote:

>

> Veema, it's not the numbers that matter, its the trend. Someone can have a

> CA19-9 in the thousands, other in the low hundreds. Anyone can feel free to

> correct me - I don't think the actual number that determines how aggressive

> the tumour is

Which is what I said...

[WifeampMum]

Hubby's Whippleversary today. He's still "no evidence of disease". It's so wonderful to be in the lucky group but I wish there were legions more of us.

Love and virtual hugs to all those less fortunate.

W&M xx

[Proud Wife]

Well I did say I was being a bit slow Veema. I was clearly slower than I thought that night! Sorry!

To Husband & Dad, a very happy Whippleversary to you. You Wife & Mums post is one of the best I've read on here for a long time! I am so thrilled to her there's no evidence of disease and trust we shall be hearing that year on year on year.

Lots of love to you both x

[Didge]

W&M, is your hubby having any treatment at all now? If not, when did it finish? I note that he had adjuvant chemo after his Whipple x

[sandraW]

Thats great news W&M really great news long may it continue love sandrax xx

[Guest]

Brilliant, absolutely brilliant, what more can one say, its the best news I heard in ages.

Best wishes to you both M xxx

[WifeampMum]

Dearest PW, Didge, Sandra and Marmalade

Thank you. Your good wishes, support, and interest in my story mean a very great deal to me. You are truly forum family!

Didge - his last treatment (Gem) was at the end of September. He was on that regime for 6 months.

W&M xx

[Veema]

I am really pleased for you...what lovely news.

Vx

[Elaine123]

Brilliant good news is like gold dust so hang on to it and enjoy every minute. Love to both

Elaine

X

[WifeampMum]

This thread is called "Thoughts from the PC frontline".

This evening my thoughts are all of DG and her Dad.

Gutted for you DG.

[Guest]

Of course they are. It's a blow every time we lose one of our Forum friends as we feel we come to know them and their charges, especially when they are brought sharply into focus through very many posts.

Losses are inevitable on here because it is often where people come to find support and solice in the face of old age, multiple health issues and a shocking cancer diagnosis.

On the other hand, we also hear a high number of survivor stories among those who are younger and fitter. Everyday now I see articles on Pancreatic Cancer, hear of big new trials of new technology in our hospitals, new drug trials, parliamentary reviews, advances in targeted chemo, improvements in surgery and so many other indications that at last, this disease is being targeted. We know that where attention is given advances are made.

I am heartened that the hospital and GP who treated Louis are seriously looking at the diagnostic pathway which I feel is key in improving results. We are meeting again in March to look at improvements in the time line for tests and results. I know it is no comfort to those who have passed but through forums and organisations like this, and the determination, quiet or otherwise, of people who have been touched by PC the outcomes will improve. There are already examples on here of those who have beaten the median by a mile.

We weep for DG, we comfort those with the bleakest outlook, we rejoice that DG's Dad had a good life and was a trail blazer and we continue to give hope and encouragement to those who are not done yet!

M xx

Edited February 11, 2017 by Anonymous

[Quickasyoucan]

Beautiful post Marmalade. I just wanted to add there can be seeds of happiness in a terminal diagnosis.

My uncle, not related as mums sisters husband, was also diagnosed with pc back in 2001. Uncle Leighton was the most positive man I ever met. He persuaded surgeons who were doubtful to do a whipple, he travelled twice to Australia post whipple once on his own to explore and once a fancy trip with my aunt business class, he received the MBE for services to music and generally enjoyed every moment of his time post whipple. His cancer did return 5 years later and he passed away but there were so many moments of happiness during that time. Most of us don't know how long we have and there is a lesson to be learnt about cherishing every day and our loved ones that can sometimes be brought into sharper relief by an illness.

Time with a terminal illness is not lost time or waiting to die it is quality time when we realise what is important in life.

[WifeampMum]

Marmalade and Quick,

Brilliant posts from both of you. I was feeling maudlin and yet I have so much to be grateful for.

Thank you for the reminders to cherish every day and to rejoice in the inroads that PC researchers are making.

W&M xx

[WifeampMum]

Two years ago today we got the awful news of my hubby's diagnosis of locally advanced PC. But today I'm massively delighted to report that he is currently "NED" (no evidence of disease) and is managing to live a really good life after his Whipple 15 months ago. At age 61 he is back at work, back at the gym, back at his normal weight and eats whatever he fancies without consequence (albeit with lots of Creon).

We had the privilege of watching our daughter complete last week's London Marathon in support of PCUK. At the charity's post-race reception there was a display of messages written by the runners to the loved ones who'd inspired them to take part. Close by to our daughters message to her Dad I spotted a tribute to our much-loved forum member Ruth from her husband who also ran on Sunday. The atmosphere in the room was charged with deep love for, and precious memories of, relatives and friends who had succumbed to this awful disease. But I think it was also full of hope for a future free from the disease. With all the money that was raised on Sunday (several £100,000s) this better future is one step closer.

I don't post here much currently but I read everyone's posts and follow the ups and downs, often with my heart in my mouth. We have just come through an anxious few weeks due to a rise in hubby's CA19-9. In Jan it had crept up from normal to 39. By mid-April it was 124. But last week it was back down to the 50s, and we're breathing easily again, reassured by the drop and also by last week's clean CT-scan. Our oncologist thinks that the CA19-9 rise was probably related to a corresponding unexplained rise in his bilirubin level. Apparently raised bilirubin = raised CA19-9 regardless of whether cancer is present. In Whipple patients scarring of the bile duct can cause raised bilirubin. Anyway, hubby's bilirubin is now nearly normal, and so is his CA19-9. Long may it continue.

[Sandiemac]

Hi W&M

So, so delighted to read your post. It gives hope to us all. Thank you for letting us share some good news with you.

[WifeampMum]

How is Stephen, Sandie? I do hope things are on an even keel for you?

xx

[stepuha]

Fantastic news W&M! NED sounds like a dream to me at the moment but one that I am prepared to fight for.

That jump in CA19-9 must have been so worrying. I am so glad it dropped and the scan was clear.

Thank you for sharing your good news!

X stepuha

[Didge]

Wonderful new W&M. Having seen many stories in the US where they do belt and braces chemo every so often and appear to get some long-term survival, is this something you would consider if it was available in the UK? (I don't think it is - I think the thinking is wait until it needs treating again). But this approach may be changing. Possibly worth asking about - I know you do, or used to do, much research. xx

[Proud Wife]

Oh W&M you are a breath of fresh air!!! How I wish for more postings like yours. I am so happy for both of you. Your husband sounds an amazing man and I am in awe that he is able to live a normal life.May he be NED for years and years and years to come!

Lots of love

From one proud wife to another xx

[Guest]

Fantastic news W&M! Absolutely brilliant

[Guest]

I think there may be something wrong with scale on here, never mind big loves to you both x

[WifeampMum]

Thank you so much, ladies, for your support, it means a great deal to me.

xx

[Veebee]

Lovely news W&M and thanks for the account of the marathon and I'll bet there were plenty of throats with lumps in them. Long may your good fortune continue.

Vee xxx

[sandraW]

Great news W&M long may it continue love sandrax xx