Pancreatic cancer journey

Hi Kittenmittens196 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I don't have the same type of cancer as you but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be more easily spotted.

While you're waiting for replies you could have a look at other people's journey by clicking on their profile name. You can also join in with existing conversations by clicking on 'reply'.

It would be great if you could pop something about about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi

i was diagnosed with PC in December last year.  Considered surgery at the Royal Free but consultant thought it’s was too marginal to risk. Where did you have surgery?

Started chemo (Floforinox) and have my 11th cycle this week.  I missed a week due to low platelets and another week due to initial adverse reaction to the chemo.

The halfway scan showed a reduction in the tumour size.  Earlier scans/mri showed lesions on liver, spine and pelvic area. But the latest scan is nowhere near as clear/certain about these.

i am taking heart from the continued reduction in my tumour marker from high 000’s to high 00’s now.  Is this something that you get measured?

Now waiting for end of treatment and the follow up scan before discussing options with my consultant.

ian

Thank you so much for your message Latchbrook 

I will do as you suggest and edit and add to my profile, and thank you so much for your warm welcome.m

amanda x 

Dear Iggy/Ian 

hello to you. Thank you for your reply. I did have surgery successfully in November 2021. I decided to go private and I paid for my surgery 32k at the Harley Street clinic under Mr Deepak Hariharan who operated on me removing half my pancreas, my spleen and gallbladder. Also removed were 13 lymph nodes, the cancer was found in 2 lymph nodes and by April 2022 after a nuclear PET scan a tumour was found in my pelvis.

Today i have been informed that the pelvic tumour has been successfully treated and has gone following 5 cyberknife radiotherapy which I received during a break of florforinox chemotherapy of which I have completed my 12 sessions ( the chemotherapy started 6 weeks after successful surgery). . My life expectancy despite the success of the cyberknife radiotherapy on the pelvic tumour remains 1 to 2 years. 

I have CA 19  9 tumour marker bloods measured two weekly. My next CT scan is September. My tumour marker has come down from 1800 to 241 . 

I had my chemotherapy and radiotherapy at St Bartholomew’s hospital NHS Oncology. 

I still feel unwell from chemotherapy although infusion number 12 finished 2 weeks ago! 

Have you been offered radiotherapy? Have you had a second opinion? I have not had a second opinion. 
I am real  pleased to hear that you have had a reduction in tumour size and that your markers are coming down. Are you on Creon? Let me know any questions about anything I have said Ian. 

bw 

amanda 

Amanda

Had 11th cycle today.

New to all this (aren’t we all), so a bit surprised you had surgery prior to chemo.  I thought chemo came first to shrink the tumour to assist later surgery.

Have you had your “end of chemo” scan & results yet? Hopefully will bring some good news re size of remaining tumour.

No, I’ve not had a 2nd opinion yet - something to be considered after my next scan results.

I have had 3 CT Thorax scans, 1 PET scan and an MRI.  I am surprised that what I thought were precise procedures throw up a number of inconsistencies and different interpretations/reports. I am still not sure if it has spread to the liver or spine.  Different scans draw different conclusions.

I take Creon - 3 tablets for a main meal - 1/3, 2/3 of way through meal and a tablet after the meal.  It certainly helps me.

I researched cyberknife treatment and will discuss with my consultant when we review future options.

Are you looking at any further treatment?

Finally - I understood that beginning to feel better after chemo has finished takes 3/4 weeks, although I’m sure everyone is different.

Ian

Ian, hi 

number 11 cycle under your belt and just one more to go? I know how rough it is and today I started to feel better nearly like you say 3 weeks since final number 12 infusion.

My surgeon Deepak Hariharan decided surgery was possible for me before chemotherapy. Before the operation I had a CT, MRI and a ultrasound endoscopy to look and sample the tumour. They found a what they thought at the time to be a 26mm tumour in the pancreatic tail which had infarcted the spleen. When he did surgery Deepak removed what they found to be a 46mm tumour in the tail . There was a clear margin around the area after surgery. I started chemotherapy in January with no spread of the cancer with the action of chemotherapy to prevent the cancer from returning. It was only in April that after a PET scan and increasing tumour markers they found the spread in the pelvis bone. They tell me the cancer is highly likely to be somewhere else as well because pancreatic cancer does not usually go straight to the bone but another organ. Since cyberknife radiotherapy worked on the pelvic tumour ( I was told this week), they did a scan at each treatment and couldn’t find any tumour anywhere else in my body. They still maintain my life expectancy to be from April 2022 one to two years. this is don’t quite understand! 

I am 56 years old and I have worked as an NHS registered mental health nurse for 26 years. I will take ill health retirement shortly . I have a lot of support from friends and family which I hope you do as well. 

Cyberknife worked on my pelvic tumour and I think it’s really worth pushing for if suitable . Haven you considered clinical trials? 

I have another CT scan in September and if I need more chemotherapy I will be given gene targeted chemotherapy after a braca test which I have to pay for despite nhs treatment. 

let me know how it goes Ian. 

Amanda 

Amanda

You have certainly been through some treatment and like you, if you are cancer free then the prognosis certainly seems strange.

Having said that when I had a private consultation with Prof Fusai at the Royal Free (recommended to me to consider surgery, although I live in Derbyshire) he did say that it was unusual for PC to transfer to bone tissue - at the time I also had it in the liver, hip and spine.  Although the liver diagnosis is now in doubt and the spine may be showing “healing” scars as the chemo has acted.  But as I said in an earlier post I was disappointed in the consistency of scan reporting.

No. 12 infusion due 10 August and scan booked for 18 August.  My halfway scan took 5 weeks to be reported. Hopefully quicker this next time.  We are considering further chemo but I probably intend to take a 4/6 week break, to have a period of feeling better and be able to organise some trips to family & friends without being tied to 2 weekly chemo, pre chemo bloods and district nurse to change dressing.

Not at that stage yet but I cannot find an NHS hospital outside of London who offer cyberknife procedures - strange as 2 of the major cancer hospitals (Christie’s & Weston Park) are in Manchester and Sheffield.

Discussed clinical trials with consultant but not much going on at the moment. And he tells me it will depend on my suitability and what stage the trial is at.   One that may be helpful to you is BioNTech trial of mRNA vaccine.  Aimed at people whose cancer may return after surgery.  Google “mRNA vaccine trial pancreatic cancer”. I haven’t researched this as I am not at that stage - not had surgery.

From your last line - would you pay for the gene targeted chemo or just the braca test?

I have great support from my wife and family, and friends.  Not sure I would have got this far without their patience, love and understanding.

ian

Hi Ian, 

would pay £200 for braca test not the chemotherapy. 
have you thought of phoning macmillian to see if they have a list of cyberknife providers when and if you need? 
your journey sounds a long one like mine so far and I am taking a break Picc line out and flying to Lisbon for 10 days tomorrow. Insurance 350 for 10 days . Fancy hotel Incase it’s my last holiday although I do have others planned. 
oh I know what a full time job the chemo is with two weekly bloods,  flushes and dressing weekly Picc and clinic appointments and then the 40 odd hour infusion at home . Hard core stuff and we are warriors. 
Do have a good break not far off.

I just don’t get how vague some of what is said in consultations regarding scans either.  I certainly don’t get why and how cyberknife can have removed my pelvic tumour but not increased my life expectancy. 

thanks for the vaccine thing . My dear twin sister is researching this and has written to consultant oncologist about it but I don’t recall an answer. So much to do all the time . 
I really appreciate exchanging mail. 
thank you . 
I am with you all the way when it’s comes to family and friends without whom none of this would have been possible for me to do alone. 

with best wishes to you Ian 

amanda 

Amanda

Great that you are getting away - hope it’s very enjoyable, and certainly not your last!

I’d love to get my Picc line out, it is so restrictive in daily life - doing jobs around the house and garden, no lifting or repetitive arm movements etc. I miss picking up my grandson and rolling around on the floor playing with him.

There are days when I even think I could manage a game of golf (with a buggy) but dare not take the risk.

When I discussed with the doctor prospective follow on chemo treatment after a break I asked if my line would come out.  He said probably not - which was a disappointment.

If you do have targeted gene therapy would your line go back in or is it via tablet?

My sister and an old friend send me any cancer news they come across.  Luckily we all read different newspapers, so I hope we get most of what is out there.

I will follow up on cyberknife providers.  How many cyberknife treatments did you have?  What was the frequency?  Did you have a scan after each treatment?

For info - I am 70 years old, always been active, walking, golf, doing up my sons house etc.  I was diagnosed with atrial fibrillation 16 years ago and have been on blood thinners since then.  This complicated some of the procedures and treatment.  I also caught covid in the early stages of chemo.  Not sure if some of the side effects I suffered back then were caused by chemo or covid.

Hope the sun is shining in Portugal, but not too hot.  Have a wonderful time.

ian

Amanda

Hope you had a great holiday and have returned refreshed and relaxed.

My chemo was delayed due to low platelets and so I had my last of 12 treatments yesterday.  Normal post chemo reaction so far - tired and a bit jaded.  Scan put back a week, but worryingly my consultant told me that reporting timescales may be even longer now.

We are planning trips to see family and friends in UK - after the recent sunny period we are not too bothered about going abroad.

Do you have a date for your scan?  How long did it take to get the results from your previous scan?

Ian