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Marmalade

Re: Thoughts from the PC frontline

Postby Marmalade » Mon May 01, 2017 5:25 pm

Fantastic news W&M! Absolutely brilliant 😍 😍 😍

Marmalade

Re: Thoughts from the PC frontline

Postby Marmalade » Mon May 01, 2017 5:25 pm

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

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

Re: Thoughts from the PC frontline

Postby Wife&Mum » Mon May 01, 2017 7:20 pm

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

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Thoughts from the PC frontline

Postby Veebee » Mon May 01, 2017 9:20 pm

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
Posts: 1030
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thoughts from the PC frontline

Postby sandraW » Mon May 01, 2017 10:51 pm

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

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

Re: Thoughts from the PC frontline

Postby Wife&Mum » Tue May 02, 2017 6:17 pm

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-diabet ... d-survival

http://www.thesundaytimes.co.uk/sto/new ... 557161.ece

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

http://jnci.oxfordjournals.org/content/ ... hort?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
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Thoughts from the PC frontline

Postby Proud Wife » Wed May 03, 2017 2:04 pm

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
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Sat May 06, 2017 3:43 am

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
Posts: 497
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thoughts from the PC frontline

Postby Veema » Sat May 06, 2017 7:46 am

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
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Thoughts from the PC frontline

Postby Proud Wife » Sat May 06, 2017 12:11 pm

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

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

Re: Thoughts from the PC frontline

Postby Wife&Mum » Sun May 07, 2017 7:16 am

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Thoughts from the PC frontline

Postby Didge » Sun May 07, 2017 9:30 am

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
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Thoughts from the PC frontline

Postby Proud Wife » Sun May 07, 2017 1:42 pm

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

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

Re: Thoughts from the PC frontline

Postby Wife&Mum » Sun May 07, 2017 6:58 pm

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/ ... reascancer

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.

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

Re: Thoughts from the PC frontline

Postby Wife&Mum » Sun May 07, 2017 8:52 pm

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