Advanced with metastases in liver and lungs. Scan shows shrinkage of tumours but prognosis seems worse.

Hi Wifey55

I can't help with your questions, as I had a different type of cancer, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list where hopefully it'll be seen by someone who can help.

If you don't get any replies you could post your questions in the ask a nurse section of the online community and one of the specialist nurses will reply to you within 3 working days. If this is something that you'd like to do, clicking on the link I've created will take you straight there.

Wishing you and your husband all the best

x

Hello wifey55

One thing I have learned in the seven ort so years that I have been on this forum is that pancreatic cancer develops in different ways with different people. That being said, it is very difficult to answer your questions.

In the case of my husband the first line chemo made no difference to the growth of the tumour and it increased. The second line, folfirinox, held at the same size but had bad side effects including infection three times. Once that stopped he deteriorated very quickly.

Signs of deterioration vary as far as I can see but included eating less and becoming more and more tired and then sleeping fo most of the day.

If your husband is feeling well now, it might be a good time to take a holiday.

I hope this helps a little.

Squeaky

Welcome Wifey55.... this is my first post on this forum so I might not be a good source of information on what you are going through but I will give it a go. I was diagnosed with tail end pancreatic cancer in October 2019 and had the tumour removed along with part of my bowel, lymph nodes and spleen. 3 months later was told it has spread to my liver so only palliative chemo available (Folfirinox) which is given in rounds of 12 every time the liver lesions are visibly growing on my 3 monthly CT scans. So far I'm on 80% oxaliplatin but full dose 5FU and Irinatikin.

I'm just starting round 37 after just over three years of diagnosis and realise how lucky I am so please don't assume this is normal.

Your questions are good so I will try to give you honest answers

1. First 6 are the worst because it's a steep learning experience. The numbness is persistent with me and feels like wearing tingling gloves and socks but not painful & I can still eat with a knife and fork, tie shoe laces, do buttons BUT my ability to undo a zipper quickly isn't good so I have reverted to wearing an elasticated belt on my trousers for a speedy exit when necessary.
2. 12 rounds of folfirinox is brutal physically and mentally but if your husband is feeling better then use the time to do the things you want to do...I do a lot of walking in the countryside and push myself to get as fit as possible to prepare for more chemotherapy.
3. I don't know first hand what determines deterioration of health but every pain or discomfort I feel makes me think it's spreading and the mental side is going to be as tough as the physical conditions so staying positive is a top priority. Don't go into denial but avoid the dark thoughts as much as possible.
4. Live each day like it's the most important one of your life and never regret any decisions you make. If it delayed treatment by having a holiday then make sure it's the best holiday you have ever had and don't assume it was a bad idea. Take control of what you can do something about.... everything else is out of your control.

5. The statistics are so variable that if you let them govern your life then you will forget how to carry on living. By all means ask for second opinions and honest answers but from what I have read you will know when the time has come.

I'm sorry if these are not the sort of answers you were hoping for but I was given 6-12 months to live and have learned to paddle board, gone skydiving, swam with sharks, gone canoeing, discovered the beauty of nature and so much more. All of which I never made time for before my diagnosis & it's what gets me out of bed every single day.... even if I get back in after a few hours when the exhaustion kicks in ;)

Thank you so much halibut your comments are really helpful. Xxx

Hi Wifey, I think it his feeing well go for the holiday….

deterioration seems to be more sleeping, less eating and keeping on top of pain. 

My hubby Gordon is 3 weeks post chemo and radio. Due a scan on the 28th April and an oncologist apt on the 9th May( which I’m dreading). 
Hope you are holding up ok? 
where you thinking of going on holiday? 

chrissie 

Hi Wifey55

I was diagnosed July 22 with 2.5cm tumour on head of my pancreas but hadn’t spread. I went on to have 6 rounds of Folfirinox which I managed really well, no major side effects, I was then told after my scan that I needed 6 more as the tumour, although stable, was next to my SMV vein and they weren’t keen to operate as I was borderline. The second round was a little harder I have to admit, but still manageable. I had a bit less energy, food became tasteless, the cold sensitivity was worse and I had a love/hate relationship with chemo. The neuropathy I had during treatment, especially sensitive to the cold has completely gone, it took around 4 weeks, all other symptoms have gone too. I then went on to have 15 rounds of chemoradiotherapy as still too close to the vein. I get my results on 5th May. I have no idea of the outcome yet but trying to enjoy every day. I know quite a few people who have gone through 12 rounds of Folfirinox and managed it quite well and we don’t really have a choice if we want to live. Miracles do happen, a friend of mine was given 6 months last May and is still going strong. 
I was told not to go on holiday as my immune system was compromised and if I caught anything it would delay treatment/possible surgery. I can’t help with your last question but never give up hope x 

Hi Chrissie

My scan is also on 28th April with results on 5th May which I too am really concerned about but have to stay positive. Just finished 15 rounds of chemo/radiotherapy. Please could I ask you if he’s borderline surgery too? 

My husband’s is wrapped around the portal  vein and SMA, they said they round see if the cancer would shrink back but didn’t seem really hopeful. I think really it’s palliative chemo but they have just not said it. I think when we see the consultant in the 9th they will be abit more honest with us as Gordon would have gone through 10 rounds of chemo and 15 days of radiochemo, Just dreading the next few apts really. Trying to stay positive but also realistic. 

• Hi Halibut thank you for sharing your experience. I had whipple in January only  to be told in April they thought it had spread to my liver. Yesterday this was confirmed. I’m currently having chemo - tough going but you have given me hope. Thank you