Thoughts from the PC frontline

[WifeampMum]

Hi Didge

To reply to your question about maintenance chemo, I have seen a few research articles that suggest this might extend survival, but I don't think there's ever been a trial to back them up.

Hubby hasn't been offered maintenance chemo, and I'm sure that our oncologist would say "no" if we asked for it, as she won't deviate from standard treatments. Also in the absence of solid evidence that it's worthwhile I wouldn't push hubby to have it, as he has a great quality of life at the moment. Plus his body's already been subject to so much poison and stress over the last 2 years (Folfirinox, chemoradiotherapy, Gemcitabine, and 2 major surgeries) that he's not in a hurry to have any more.

Having said that, I am keen to get him started on statins as there's increasing evidence:

https://www.cinj.org/examination-diabetes-and-cholesterol-drugs-pancreatic-cancer-mortality-shows-improved-survival

http://www.thesundaytimes.co.uk/sto/news/uk_news/Health/article1557161.ece

http://apps.pathology.jhu.edu/blogs/pancreas/?p=270

http://jnci.oxfordjournals.org/content/109/5/djw275.short?rss=1

that they can improve survival in resected patients. But our oncologist won't prescribe them (again because they're not standard treatment) so this week we are going to Harley Street to hopefully organise it privately.

[Proud Wife]

Thank you very much for this W&M. I remember when Statins hit the news. I asked hubby's lazy oncologist if it was worth putting him on them. Answer, I will read the article and get back to you. Never did.

However, as a not so long ago diagnosed diabetic and after what happened to hubby, I obviously worry about PC (but then, who wouldn't). But I am on both Metformin and statins which comes as a little bit of relief, even if there's no clinical data on the use of both. If I've read the article properly, it's either or? I'm hoping that double will give me double hope!

Lots of love xxx

[Dandygal76]

I would also go with Statins and I also agree on Metformin. I would also keep with bitter melon and turmeric (dad just could not tolerate it around chemo). I am not sure though PW that it is lazy oncologists. I think Marmalade has it right trying to change the strategic view because the oncologist can only treat according to protocol and have to justify on paper EVERYTHING they do and spend. So, there is no artistry... just blinking paperwork and procedures and protocols. This cancer needs a holistic approach. W&M I am so pleased for you all that things are going well and I wait the 5 year mark when hubby is declared cancer free. It will be a cause of celebration for us all. x

[Veema]

Great news Wife&Mum...its so lovely to hear the good news, the positive stories. I really do hope he's cracked it!

Vx

[Proud Wife]

Good to see you back here DG. My comment about lazy oncologist was only in relation to my hubby's oncologist who only did the very basic....proven by doing a biopsy 1 year after diagnosis. Bit late then when the disease was progressing don't you think xx

[WifeampMum]

Thanks PW, Veema and DG for your lovely support.

We had our Harley Street consultation this week and I'll report back in case it's of interest.

So, the aim of our consultation was a prescription for statins and I'm pleased to report that we left with one. It was also suggested that hubby take the following supplements - all available off prescription:

- Vitamin D (actually he's already taking this but Prof Oncologist wants him to up his dose from 1000 IU to 2000 IU / day)

- Bromelain (500 mg / day)

- Curcumin/Turmeric

In addition to this lot, hubby takes bitter melon pills. Surprisingly Prof Oncologist wasn't aware of the research on their benefits for PC patients.

Prof Oncologist confirmed precisely what DG says above, that most oncologists are very conservative because that's how they are programmed to behave. Going off piste is strongly discouraged by the system. The reason we met with Prof Oncologist is because my research indicated that he likes trying non-standard treatments. I'm happy to divulge his contact details if any readers want them...just ask the PCUK Support Helpline to put us in touch.

Love to all

W&M xx

[Didge]

Hi there. I'm glad you have onside a private oncologist who is on your wave length. Will he advise on more conventional treatments and trials too? I assume you have done the BRCA gene mutation test which was done by our NHS hospital. There are also immunotherapy and vaccines to consider. I know you are a researcher so I am sure you have. Rob was NED at one point but sadly his hospital took the standard approach of waiting until it came back. One of the true stories on here (I believe it has now been edited with less information) was a lady who was operable but had lymph node involvement and several months after her adjuvant chemo ended and her life was back on track, she was persuaded reluctantly to have chemoradiation by her private oncologist and has now passed the 5 year survival mark (very impressive for a poorly differentiated tumour with lymph node involvement) and I have read similar stories in America. In the end of course it is the patient's choice whether to engage with further treatment or have a rest. It's a difficult one! X

[Proud Wife]

Aaaah, I thought DG had misread my post but reading it properly, I'm the one who misread hers.

I understand about being conservative but when faced with such a poor outlook for the majority, then what's the harm in trying something simple like a statin? If you don't try, you'll never know.

Really pleased you got a private prescription, presumably now repeats can be obtained from your GP?

It's only by getting to know you guys on here that I've come to realise there are other alternatives. Whilst my husband was being treated, we just accepted what we were told without going for second opinions. I had virtually no knowledge of nanoknife and I know for sure that hubby would loved to have gone to your Prof Oncologist who's got the right idea. However, I've come to accept there's no point looking back - it was hubby's time to go but it's bloody unfair that he had to go too young.

On a cheerier note, your husband is doing fantastic thanks in part to your research and persistence! Looking forward to hearing more of your lovely positive updates in the future.

By the way, a fair few of us are in contact with each other via Facebook or email and if you'd like contact off forum, please email admin. We are planning a meet up at the seaside in the summer if you are interested W & M, where cancer doesn't have to be the only conversation!

Much love

PW xx

[WifeampMum]

Hi Didge, thanks for the questions and info.

I'm sure Prof Oncologist would have advised us on conventional treatments and trials too but we didn't pursue it with him as we trust our regular oncologist for this info.

We had the BRCA test done, hubby is not a carrier which was a relief as this would have had implications for our kids.

Re immunotherapy and vaccines, yes these are certainly possibilities for the future if the cancer returns, as is Nanoknife.

As you say, the choice between further treatment or a rest can be a very difficult one but at the moment hubby and I feel at ease with his current regime. The MD Anderson online PC survival calculator:

http://www3.mdanderson.org/app/medcalc/index.cfm?pagename=pancreascancer

says he has a 67% likelihood of surviving at least another 3 years. Other factors that give us hope are his great post-Whipple pathology results and his excellent response to chemo. But I don't think we'll ever feel complacent as we're only too aware that he's had a pretty exceptional PC journey so far and that things can turn ugly in a heartbeat. Today, however, we are just immensely grateful to be where we are, we are so so lucky.

[WifeampMum]

Hi PW, thank you so much for the heads up and I may well ask admin for contact details. A trip to the seaside with some very special ladies sounds wonderful!

W&M xx

[Justamo]

W&M I am a bit tardy with congratulations on your wonderful news. I don't often tell Peter what's on this forum, but I told him about the NED and he was delighted. We all need a helping of good news and you have provided it.

Love, Mo

[WifeampMum]

Ahh, thank you Mo. Hubby and I will do our darnedest to keep providing cheer here.

I do hope everything is as fine as can be for you, Peter and Boris.

W&M xx

[Elaine123]

Hi W&M great news to read that everything is good at the moment best wishes to you both .....that is great that you managed to get hubby put on statins everything is worth a try ....take care

Elaine

X

[WifeampMum]

Just had to post today to register my delight at the announcement that Abraxane will be available on NHS England.

Well done PCUK and other interest groups for campaigning so effectively. This change is going to make a significant difference to the survival time and quality of many patients' lives. Brilliant!!!

W&M xx

[PCUK Nurse Jeni]

Thank you W&M!

We hope that this will make a difference to many.

Jeni.

Pancreatic Cancer Nurse Specialist.

[WifeampMum]

Well, after 2+ years on this journey, and having always been only too aware that the other shoe may drop at any time, I think that time may have come. Hubby's CA19-9 has risen to the scary height of 1600, having been just 50 something when it was last checked four months ago. His next scan has been brought forward to Saturday, and we see our oncologist a week Friday.

I'm trying hard to stay calm and strong but it sure ain't easy.

Wishing everyone well.

Love

W&M

[Dandygal76]

Oh no W&M. You must be terrified but hang in there until the scan and let us know what happens. Knowing you I have found this to be the best article on CA-19 markers and has some useful references to follow:

http://www.hematologyandoncology.net/archives/january-2013/tumor-marker-is-it/

I have just reread and note that it states:

"CA 19-9 is increased in multiple gastrointestinal cancers, but elevated levels are also found in benign diseases, including peptic ulcers, chronic and acute pancreatitis, cirrhosis, cholangitis, and obstructive jaundice"

I have everything crossed it is a benign blip. x

[WifeampMum]

Thank you so much Dandy, I really appreciate your crossed fingers and the article. Here's to a benign blip!

How are you getting on at the moment?

Xx

[Justamo]

W&M, we all get so much identification with each other on this forum, but :

"Well, after 2+ years on this journey, and having always been only too aware that the other shoe may drop at any time, I think that time may have come".

really made me jump. Change the 2+ to 1, and it could be me speaking. In our case it's not CA19-9 numbers but pain and sickness which has been building over the past three or four weeks.

Let's hope that Blips-R-Us !

Good luck W&M, and prayers too.

Love, Mo

[PCUK Nurse Jeni]

Hello W&M,

Thank you for the update on the forums, and so sorry to hear about this.

Naturally, a worrying time. However, good that the scan was brought forward, and the appointment. Its reassuring that there is action based on the rising ca 19.9.

You have always been there to reassure others W&M, and I know that you have many friends on the forum. I can imagine that its hard to keep your calm at such a time, but also aware that you are a tremendous support to your husband, and I am sure that he will appreciate this now more than ever.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[WifeampMum]

Dear Mo

I'm so sorry that Peter is having to deal with pain and sickness, how miserable for him. Miserable for you too. Knowing and seeing that the love of your life is suffering is rubbish. I do hope it's not the progression that you fear and that Peter starts feeling better again.

You and I are both forum aficionados and are therefore very familiar with the bounce back. I wish Peter a big fat and protracted one.

And yes, definitely hoping for Blips-R-Us forever,

love

W&M xx

[WifeampMum]

Hi Jeni

Thanks very much for responding to my post and your very kind words which I hope I can live up to. I have the most wonderful husband who is so deserving of the very best support so I will try my damnedest (as do all the carers who visit this forum).

W&M x

[Marmalade]

Dearest W&M,

I know it's easy to say but this disease really is a roller coaster! I know you are in a down dip and truly, I can understand the anxiety, every time there is a set back it's as if we are facing the diagnosis again for the first time, the limbo land we live in beguiles us along the way.

You are doing the right thing in trying to stay calm and ride out this latest storm but this is a place where all wobbles are allowed and understood. Sometimes it helps to know that, should you feel it would help, it's ok to have a bit of a melt down with friends occasionally. It's a big thing we are dealing with here.

I know you will quietly go on with the day to day and caring for your man because there is little else one can do but please be assured that we are all here with you both, cheering you on and hoping and praying for a blip!

Much love,

Marmalade xx

[Marmalade]

Dear W&M,

PW is having some issues accessing the forum but wants you to know she is thinking about you and sending lots of positive vibes for blips R Us xx

[WifeampMum]

Dear Marmalade and PW

Thank you so much for your messages, prayers and positive vibes.

My natural inclination when things go awry in life is to clam up and hide away. But something told me this time that sharing would help me a lot.

To be honest I felt the need to reach out to some very special people who have experienced the PC rollercoaster and are great at sitting next to others who are finding the ride a bit much.

Marmalade, PW, I can't tell you how much your virtual support means to me, especially as you are both on a different but no less scary form of rollercoaster. I hope at the moment that your rides are gentle.

Much love

W&M xx