An introduction

[Cathy]

I have been following some of the threads on here for a little while and have just posted for the first time on another thread (Kate's) so thought I'd introduce myself and say hullo.

My partner, Jonathan, was diagnosed with advanced PC just before Christmas 2012. Until then he had been having some low level pain (since the Autumn) but was controlling this with paracetamol. After being referred to a consultant for tests, a scan revealed cancer on the pancreas that had spread to the liver, lymph nodes and abdomen. The consultant couldn't believe it as he looked so well, his blood tests had been fine, stool samples fine and he was a healthy weight. He is a fit, strapping young 57year old. We were both devastated by the news and the future of growing old together suddenly looked bleak and empty.

He started a regime of FOLFIRONOX at the beginning of February which by and large he is tolerating well. The biggest issue he is having is fatigue which starts on the Sunday following Wednesday's chemo with a big dip on Monday then slowly returning to normal over that week. He also suffers tingling, a sore mouth and constipation, the latter 2 when also fatigued. By and large he is back to normal by the time the next chemo session starts. Since starting chemo he has also started clexane injections after developing a blood clot near his Picc line and we now know that blood clotting is a side effect of the cancer.

He's been told he'll be on these for the rest of his life?

Although the chemo is grim he ceased taking pain killers after the 2nd session of chemo and has a huge appetite. Although he lost a bit of weight initially due to a reduced appetite he has probably regained most of this and has put on 4-5kg at his last weigh in from the previous. He was always a bit overweight even at his lightest anyway (he's a well build 6ft + guy). The oncologist was sure that the tumour must be reducing so we were a little disappointed to discover that his first post chemo scan showed no change (tho his tumour markers have gone down). However, I now realise that this is a GOOD result.

So, the plan is to continue with the chemo until such a time that it stops working or he decides to come off it, or something else comes along, building in breaks (initially we had been told he'd have only 2 lots of 4 sessions).

When he was 1st diagnosed I didn't think we'd even make it this far. We've had weekends away, today we've been gardening and are just about to pop out for a drink and a curry. I feel like we are living in a bubble but determined to remain positive and fight for him as much as I can.

All the best and much love to everyone on here in fighting this horrible disease.

Cathy x

Edited April 21, 2013 by Cathy

[J_T]

Wow Cathy that was some diagnosis to take onboard but looks like you are coping brilliantly.

I wish we could do some of the things you are doing together, Ray (a youthful 61), longs to go for a pub lunch and enjoy it. As I said in my other post though, the first lot of folfirinox wiped him out more or less straight away, the nausea is awful and he spends all his time in bed. No appetite either. I hope every day to see him a bit better and your post has given me hope that he may at least get his appetite back.

These drugs feel more like the enemy than the cavalry but we just have to keep trying don't we?

Best wishes to you and Jonathan

Julia

[Cathy]

Hi Julia

Thank you and, yes, I agree. It is hard to get your head around the idea of taking drugs that can make you feel so awful and hard to see someone you love going through it. I keep telling Jonathan I wish I could do it for him.

Jonathan's side effects don't last the whole 2 weeks so hopefully Ray's sickness will pass and his appetite return this cycle. They may be able to help with that as well. I'm assuming he has been given anti sickness drugs and steroids? Steroids help the sickness as well as increasing appetite.

I can only really speak from my own experience but despite side effects Jonathan noticed definite improvements in the symptoms after his first 1 or 2 sessions so if his nausea can be managed, hopefully Ray will too. I'm crossing my fingers very hard for you all.

Cathy x

[laura]

hi cathy, i so feel for you and your hubby, we have been there, since 2010, still going on, just a different "normal" !!, have you tried your hubby on any meal replacements/ supplements? they come in many flavours and can be prescribed. my bri used to have 2 or three a day when he wasnt` fancying food, cos of the mettallic taste, hope this post helps, have a look at my posts sometime may be something there for you to hang on to, have to stay positive, hard but true, we still are doing this. love and strength laura xx

[Cathy]

Hi Laura

Thank you for your reply.

I've seen some of your other posts and your husband's progress is fantastic. A real inspiration for us.

We are lucky so far as Jonathan is enjoying eating and managing food just fine. His main food issue has been cravings for certain food (liquorice allsorts on one memorable occasion) and so we've just gone with that. He is actually overweight now!

Long may this continue!!

Love to you and Bri

Cathy x

[karen17]

Hi Cathy,

I've just caught up with your posts and have found a remarkable similarity between our stories. My husband Bob was diaganosed in November 2012 following 2 weeks of abdominal discomfort. Went on to discover he has pc with liver metasteses. Commenced Folfiranox Xmas week every fortnight - last scan showed a reduction in all tumours which is fantastic. He keeps asking the oncologist "now what" as he has been told that after his last session which will be at the end of May they will give him a break for 3 months then resume chemo. We want something else to be offered as like your husband Bob is also tolerating the chemo well. He is still working full time ( in fact more than full time as a self employed sales consultant ), exercising, socialising and yesterday spent all day spiking our large garden and dressing the lawn! We don't know whether to look down the private route, start asking for second opinions or what. Just know we can't sit around and wait! I feel that there is a pathway to be followed by the oncologists and they are not looking at individualised care which makes me soooo angry. Have you any thoughts that I may not have thought of Cathy?

Take care

Karen xx

[Cathy]

Hiya Karen,

Fantastic news re Bob's scan - you must have been delighted! We had his first scan result back last Monday which showed no change (tho his tumour markers had reduced a lot). This was a bit of a disapointment given the fact his pain went so quickly and he was eating well and putting on weight (he's back in what I call his Demis Roussos shirt ) Anyhow, Jeni from this site was very encouraging about his results overall and so we feel much more positive.

At present what the oncologist we have seen most is saying is that Jonathan will continue with the chemo going forward until such a time as it stops working, or he wants to stop. He has said that they will build in breaks around Jonathan (he's just had a 2 week break). Previously we had been told that he would have to come off the chemo at the end of May (like you) and, when chemo was needed again, would go onto something different due to Folfirinox's toxicity (2 different oncologists, same team!). So, your advice is different again to ours.

I have to say what our oncologist said - this was that it was good to stay on the chemo with shortish breaks (i.e. 2 weeks) as that it is more likely to stop the cancer getting resistant to the drug than during a longer break. So, with that in mind, I'd be tempted in your situation to ask about that and get a second opinion. Our oncologist said that there had been good results from remaining on Folfirinox and some people had stayed on it for some time (well over a year).

Saying that, Jonathan blanched a bit when that was suggested!

It's difficult though isn't it, when you get different advice?

Love to you both and let's stay in contact and compare notes.

Cathy xx

[J_T]

You two, how many cycles are your boys having? They have said 8 to Ray! That may change if Ray decides he can't hack it, I'm not sure what his feelings are but we see the onc on Wednesday.

He's been a bit better this afternoon and had a bit of porridge. This is GOOD news! He's watching the match on his iPad but not avidly. Still it looks like he might be feeling a bit better fingers crossed it continues.

[Cathy]

Hi Julia

Brilliant!!! Let's hope it's onwards and upwards now in. How is Ray today?

When Jonathan first started he was told he'd have 2 lots of 4 sessions with a scan between. Now he's been told that he should continue into the foreseeable future with no end date. It depends how he feels about it all after the next few sessions but the cycles could be organised around him to an extent, building in breaks and tinkering with the drugs to reduce side effects.

We have found continuing with the steroids this time has stopped his big dip on Sunday and has also (although this may be coincidental) stopped constipation. He's coming off them slowly so so we will see in a day or so if that has worked.

let us know how you are getting on.

Cathy xx