My journey so far.

[JED]

43 Years old and diagnosed with Stage 4 Pancreatic Cancer in December 2015. Oncologist advised it is not operable and spread to Duodenum and Peritoneum. It has been a hell of journey since October when I first developed symptoms and still find it hard to believe. I knew very little about this cancer before being diagnosed and still trying to come to terms with the very bleak outlook of potentially not being around for my family 6 months to a year from from now. My children are too young to be without a Dad . Even though it feels like I’m on death row I’m determined to stay here for as long as possible.

I’ve posted my timeline below incase it is of any use to anyone:

Mid Oct: Upper Stomach Pain / Severe Vomiting

GP Prescribed Omeprazole

Another GP Consultation prescribed Lansoprazole

13/11/15 GP advised getting an Endoscopy

22/11/15 Out of Hours GP: Severe Vomiting.

25/11/15 Consultation with Gastroenterologist.

CA19-9 =1685

27/11/15 CT Scan & Endoscopy

Emergency Admittance to Hospital. High Temperature / Severe Vomiting

28/11/15 Discharged after IV Fluids and Antibiotics

30/11/15 Emergency Admittance to Hospital. Severe Vomiting.

Results from Endoscopy showed Duodenum Narrowed

CT Scan was inconclusive but showed distended Stomach and Pancreas.

02/12/15 Endoscopy Biopsy.

CA19-9 = 1855

03/12/15 Biopsy Result from Duodenum confirmed Pancreatic Cancer.

CT Scan showed tumors in the peritoneum

07/12/15 Stent Fitted in duodenum

10/12/15 Hospital Discharge.

CA19-9 = 2300+

16/12/15 Chemo Cycle 1: Gemcitabine (2000mg) / Abraxane (250mg)

CA19-9 = 3171

23/12/15 CA19-9 = 2377

30/12/15 CA19-9 = 2400+

13/01/16 Chemo Cycle 2: Gemcitabine (2000mg) / Abraxane (250mg)

CA19-9 = 1392

Medications:

Dexamethasone (Steroid)

Ondansetron (Anti-Sickness)

Metoclopramide (Anti-Sickness)

[Didge]

hello Jed and sorry that you are facing this at such a young age. I know from experience how hard it is when you are worried about leaving young children and others on this forum will relate to that too. You were actually diagnosed pretty quickly for this disease and presumably the spread is local and there is no distant spread e.g. to the liver. I wonder why they have not given you folfirinox given your young age - do you know? Anyway some good news is that the CA19-9 marker is coming down so hopefully the treatment is working and will continue to do so. How is your family coping? Winston's wish, which is primarily a charity for bereaved children, also has a section under 'supporting you' on their website called 'Dealing with serious illness'. You might find that helpful if you are worried about the children. Good luck and let us know how you get on. Didge

[Proud Wife]

Hi Jed

Welcome.

I too am so sorry that you have been dealt this cruel blow at such a young age.

I too knew nothing about this evil cancer either until 10 months ago when my hubby was diagnosed stage 4 with liver metastasis. You learn quickly, although I still have loads to learn. I research PC every day, whether that's the right thing to do I don't know but it helps me.

One of the things I learnt was that everyone is different so try not to think too much about timescales. My hubby was terribly ill at diagnosis, he was so thin, he had to sit on a cushion as his bottom cheeks were literally skin and bone and I thought he'd be lucky to see summer.

It took I would say a good three months before he started to look well again but 12 cycle of Forfinox later, a changed man sits before me. 4 stone heavier - and I'm so pleased to see that you are on dexamethasone and metoclopramide - which is what my hubby took and what I call miracle drugs because they are both, with careful balancing, what helped my hubby regain his weight.

How are you coping with weight and being able to eat? Has the vomiting stopped now or under control? You are only 6 weeks into treatment and already, as Didge has mentioned, your CA19-9 marker is coming down. I hope and pray this continues to fall for you. Your diagnosis must have come as a massive, total and utter shock to you and of course you are still coming to terms with the diagnosis.

Others on this forum know far more than me about PC itself, so other than wondering too why you were not put on Folfirinox, I won't say anymore for fear that I might advise you incorrectly.

However, I would love to share with you my hubby's philosophy because it's definitely working for him. 10 months ago, he said to me, with a positive mind, anything was possible. Through my tears, I looked at him and said don't be so ridiculous. I am now eating my words because now he's had to give up a very stressful job, he has never looked or felt better and you just wouldn't know he was ill. His motto, as I've said over on my thread is "I'm like weed and you don't get rid of weed" so if you'd like to join this very special, exclusive weed club, Welcome!

I sincerely hope you continue to share you journey with us on here as the help and support that you get is superb.

Take care

(Very) Proud Wife!!

[JED]

Thanks for the reply Didge, Proud Wife.

October to December was awful with the vomitting I did lose a lot of weight but once the stent was installed the vomitting stopped. I have put most of the weight back on. In fact I did mention to the nurses I am constantly hungry, apparrently this is due the steriods. My first couple weeks on Chemotherapy was rough I managed to pick up a virus which caused 40C+ temperatures so was in and out of hospital. I just wondered whether my body just didn't like those toxins. I've been fine since. The last couple of weeks I have been feeling physically stronger. I'm hoping this will continue.

The Folfirinox I did ask my Oncologist about this as it seemed most people are on this and he advised there wasn't much of a difference between the Abraxane. He did real off some other drugs at the time as alternatives if the Abraxane / Gemcitabine didn't work.

The kids are coping well though my youngest children (6 & 11 year old) are only aware that I have cancer and think I will get better soon. My oldest daughter (14) doesn't really say much about it but is aware of the potential outcome. Their Schools have been great assigning a support person if they feel they need they to talk about anything or just need to some quiet time away from a lesson.

Proud Wife, Good to hear your husband is doing well after 10mths. He sounds like he has the right mind set and has been giving this disease the beating it deserves.

[J_T]

Hi and welcome. After the initial awfulness of your symptoms you seem to be doing much better, hope that continues!

As didge says you did get diagnosed quickly in terms of a pc diagnosis hopefully that will prove beneficial.

Things to find out about

Creon - enzyme replacement that help digest your food and keep your weight on.

Nanoknife - only obtained privately at the moment, but worth a research. A couple of people here have had it with good results.

Good luck with your treatment.

Julia x

[J_T]

ps - look for the thread with same title as yours 'my journey so far' by MSH.

He has had nanoknife and takes bitter melon capsules/tablets. Lots of positivity on his thread.

Jx

[Didge]

Hi Jed, if I remember rightly and if it is still the case, abraxane was only licensed for initial treatment, not later treatment in which case some oncologists might like to give it a go and then perhaps try folfirinox later if necessary as they may be prevented from doing it the other way round. x

[WifeampMum]

Hi Jed,

Like the other posters on your thread I was terribly sorry to read of your diagnosis - especially devastating at such a young age - and I wish you and your family the very best.

For information, Abraxane +Gem seems to be a commonly used first-line therapy in the USA. And according to the findings of a recent study presented at the ASCO GI Cancers Symposium 2016:

http://meetinglibrary.asco.org/content/160130-173

"Comparative effectiveness and resource utilization of nab-paclitaxel* plus gemcitabine versus FOLFIRINOX in first-line treatment of advanced pancreatic adenocarcinoma in a U.S. community oncology setting."

there is virtually no difference in outcome between those treated with Abraxane + Gem compared to those treated with Folfirinox.

*Abraxane is the trade name of nab-paclitaxel

Wife & Mum x

[Proud Wife]

Thank you Jed for your kind words of encouragement. Let's give it a beating together!

When's your next chemo cycle?

Take care xx

[JED]

Thanks All for the advice and support.

I've ordered some of the Bitter Melon capsules. Hopefully I will see some benefit from those.

I've just finished Chemo Cycle 2 and due to have a CT Scan on the 4th Feb. My meeting with the Oncologist isn't until the 10th for the results, so will be a long week.

[PCUK Nurse Rachel C]

Dear Jed,

Welcome to the forum, although I appreciate its not a place anyone wants to be. I am sure you will find this a very supportive community to be part off and thank you for sharing your journey so far, as I can only imagine, it wasn't an easy thing to do.

Best wishes,

Rachel

Pancreatic Cancer UK Specialist Nurse

Support and Information Team

[JED]

Hi All,

Met with my Oncologist yesterday. Results from the CT Scan showed a reduction in the pancreas and peritoneum. Tried to get him to explain how big the tumor is but he said its difficult to tell on the CT Scan the difference between the cancer and scar tissue. He's going to supply me with a copy of the Radiologist report. My CA19-9 is down to 341. Started my 3rd Cycle of Chemo.

Spoke to him about the Nanoknife procedure. He didn't think that was an option for me due to the tumors in the peritoneum

[Proud Wife]

WOW Jed, that's a really brilliant result! Very well done. Really pleased to hear some good news. That just proves that treatment is working, especially with such a decrease in your CA19-9 and that's after just 2 cycles?!! Good luck with your 3rd cycle, hope the side effects are not too bad.

I wouldn't be too disappointed about Nanoknife at this stage. There are still other options available to you and I'd only worry about that IF and I say IF your current treatment stops working. Don't forget, positive attitude goes a long way towards helping PC bashing!

keep up the good work!

Proud Wife x

[J_T]

Good news JED, hope it continues.

You can always email Prof at xxx re Nanoknife. I don't actually know what the criteria is either. You may as well research it with the people in the know and know your options. Maybe with more shrinkage it could become a possibility. Nothing ventured, nothing gained and all that.

Good luck.

Julia x

[Didge]

Yes, I would definitely enquire with Prof . It may be that peritoneal tumours are not treatable with nano knife but if they disappear with chemo it might be different. Certainly liver tumours are treated so it is not about metastases. x

[JED]

Been a while since I've been on here. Just had my latest CT Scan which didn't show any reduction this time. I am at least happy there has been no new growth. My CA19-9 is down to 28 which I'm pleased with. The results were reviewed with the MDT (Mutli-Disciplinary Team) but still no option of surgery. Just started my 6th Cycle of Chemo. Generally I'm feeling well apart from the couple of days following Chemo and the tingling sensation in my left foot.

[sandraW]

Hi Jed,

Great news about the CA19's and good that you are coping okay with your treatment and feeling pretty much okay. My husband had Folfirinox, he suffered with neuropathy too, his was worse in one foot than in the other. I hope you continue to feel well and though we all want reduction stable is good too, take care sandrax

[JED]

Been a few months since my last post, everything seems be going ok considering.

My last CT Scan was in July which showed tumor reduction and classed this as 'stable disease'. Just had 5 weeks off my Chemo due to suffering an infection early August and had a holiday booked to Florida with the Family. We had a fantastic time, felt like my old self again. Feeling so much better and stronger. My hair has even started to grow back though a bit patchy. My CA199 crept up from 26 to 96 during the break. Started my 10th Cycle of Chemo yesterday which will hopefully knock it back down.

[RLF]

Hi Jed, I come on here less than I used to but just read through your story and wow you've done so well! I'm happy the Abraxane is kicking some ass for you and hopefully after the break on holiday your body will have more energy to keep on fighting. Did you ever hear about the Nanoknife? I'm not sure where in the U.K. You are but I know now here in Leeds they have one on the the NHS at St James. Because of the peritoneal involvement they might not want to do it but as you have such a low tumour count and you're so young they may be more willing to give it a try for you.

Hope you continue to improve and keep us updated.

Rob

[Dandygal76]

Hi Jed. Those markers sure have gone down though from your initial diagnosis so you must have been pleased even though I know they are creeping up now. I think they can vary for other reasons so fingers crossed it is not sinister.

I am glad you got to spend some lovely quality time with your family in Florida. I cannot wait until my family get the chance to have a nice break with dad.

Much love to you and your family. x

[JED]

Hi Rob, Dandygal76, thanks for the replies.

I have enquired at the Hospital about the Nanoknife procedure they have a requested a copy of my last CT scan. See what happens, fingers crossed.

My CA199 does tend to go up 10-20 during my week off Chemo, so I am not too worried at the moment now I'm back on the Chemo. I have my CA199 checked every 2 weeks

Dandygal, Hope you get a nice break with your Dad soon.

[Ruthus]

Hi JED

I have not said hello yet and have been meaning too. You have done brilliantly with treatment and what a great response. It's lovely to have a chemo break isn't it. I loved having no chemo over the summer and noticed my hair got really thick again.

I hope you have a positive response from the Professor in London. He is a lovely man and am sure will respond quickly. Fingers crossed you are a canditate for nanoknife.

Ruth x

[JED]

Hi Ruth, nice to hear from you. I am very pleased with my response to treatment. I often wonder how I can feel so well but be so ill. Hopefully I will continue to feel this good for a longtime yet.

Have you had the nanoknife procedure yourself?

[Dandygal76]

Hey JED, did you get a response from professor? I am glad you are feeling very positive, long may it continue. x

[JED]

Hi Dandygal, I've not had a response yet. Need to followup with my Oncologist this week to make sure he sent them my CT Scan.