39 and pancreatic cancer diagnosis! I have just started chemo finding it tough

Hi and a second welcome to the online community

I'm sorry to see that no one from this group has come forward to talk to you yet but replying to you will 'bump' your post back up to the top of the discussions list where it'll be more easily seen.

While you're waiting for replies if you type 'chemo' into the group search bar you could have a read of previous posts on this topic to see how others have coped. You could reply to any of the more recent ones if you felt that the poster might be able to help you further.

Have you spoken to your CNS about the nausea and difficulty eating? They may be able to prescribe you some anti sickness meds, or change the ones you're on, and could also offer advice on eating.

x

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Hi Inahaze, I've just come out of A&E for the 3rd Friday in a row. My beloved uncle also has pancreatic cancer and within 24 hours of chemo he gets a raging fever. It's a bloody nightmare. I don't think that he'll go for anymore. Just awful leaving him there now over Easter weekend.

I do hope that you find something that you enjoy eating. Sending you lots of love xx

Thank you for the reply. It’s all so new to me think I’m still processing the diagnosis and getting my head around what chemo is doing to my body.

Glad you are out of hospital, I’m worried that I’ll be in and out. The 2 week turn around between treatments is so scary. I really hope I can stay out next time. I had an ok day Wednesday after getting home. But then things turned again Thursday... almost sent back but just on the right side of ok today. Trying to eat feeling so week. 

The chemo is so tough. I’ve never really taken much medication in my 39 years and I feel like every day the chemo is claiming another bit of my body to mess up. Keep saying tomorrow is another day and it will be better. 

Never did I think I’d find stomaching a tiny piece of cake an achievement... no worries on Easter egg calories this year! 

Xx

Hi inahaze,

I am 56 and was diagnosed just under a year ago , I can so understand your concerns I have had 10 chemos and am about to start more , I was ready for chem radiotherapy but have been told it is now not a viable option you talk about you diagnosis and what chemo is doing to your body , well , since starting chemo last year I have been in and out of hospital 5 times, and I have lost  count of how many times I have said to myself ‘Why “ or I can’t do this anymore, but you start to feel better and you learn you can get through another one .trying to eat well is awful, sometimes for me even a spoonful of soup was way too much , are you on Creons ? And Fortisips ? How often is your chemo ? Mine is every other week ( week on week off ) I go home with a ‘pump’ attached which is the disconnected by the Distric nurses, 48 hrs later, then about 48 hrs later I get poorly, my tumour is attached to my blood vessels and I have stents in my bile duct , I have had a lot of symptoms and have so much medication for different symptoms, please feel free to ‘friend ‘ me or ask any questions you want at all I will help where I can , sounds like we are going through much the same symptoms,

So sorry to hear what you are going through. My dad had a stent put in his bile duct 2 weeks ago. Yesterday he started with the most violent hiccups that last for hours and now hes got this blacky brown stuff coming out of his nose and it was on the sheets this morning. Could this be anything to do with the stent? My dads is attaches to vessels and even though its been 4 weeks since diagnosis he hasnt heard one thing about chemo still. I wish u all the luck in the world keep going u got this xxxxx

So sorry to hear what you are going through. Keep strong xx

Hi, 

thank you for your message. I’m just out of hospital for the 3rd time time since starting Chemo ‍ and so far I’v only had one round. I am feeling a little bit like I need the world to just give me a break now! 

Our cases sound similar so I am so glad to find you. My tumour is also located to close to the stomach vesicles / nerves to operate without Chemo shrinking it first. It’s quite scary when in hospital they start talking about it as inoperable when the specialist did not describe it in this way so I’m staying positive. 

The first chemo knocked me so badly I couldn’t eat I wasn’t given the Fortsips but I think a milkshake equivalent. I’ve been on the Creon for a while now they really did help my stomach. Do you ever get pains below your ribs that shoot up to the right shoulder? My nurse has said it’s the mass pressing on the nerves they really scare me when they hit. I’m on dihydrocodine for the pain... but these mean I then need laxative every couple of weeks!

My Chemo is like yours I have two in hospital and one to take home for 48hours then 12 days and meant to start again... however I’ve only done one! If I’m honest I don’t think I was well enough when I went in for the 2nd but I’d got my head in a determined place only to discover that the PICC line bleeding isn’t a normal thing! Lots of worried nurse faces... Turned out I had two blood clots above the line... so on blood thinners for at least 3months and 10days hold!

went back after the 10days for blood tests... these weren’t normal and I had pains which I mentioned, again not normal so they kept me in hospital... turns out I have a lesion on my liver which is likely a secondary cancer spread!

I was meant to start chemo on Wednesday but a slightly reduced dose, which I’m not sure how I feel about... but ended up back in hospital early hours Thursday with a temp of 38.7 I now have an infection potentially caused by gasses moving up through the stent so again on hold for a further 10 days of antibiotics. Glad thy have let me home... but as terrible as the chemo is (and I’m dreading the not eating and everything else) I just want to be able to start it again! I keep working the mass is growing, especially with the new secondary news.

have you ever had Buscopan? They have sent me home from hospital with them and I’m not sure they haven't given me a new tummy ache! I’ve added you as a friend... I do need to figure this site out more though.
thansk again for your message. I was feeling a little alone in the young pancreatic group... non of the info I read seems to relate!   

Thank you x

Hi, the stents are such strange but amazing things. I’m on my second as they needed to remove the first to get a viable biopsy after the most horrific endoscope... the first one I had strange pains with though so not necessarily a bad thing in the end. 

I am actually just out of hospital, I went in with a temp and have an infection they think in my gallbladder from gasses moving back up the stent... I did not know this could happen. Since having it I am very ‘windy’ I often get hiccups (not as long as an hour though) and I burp all the time (I never used to at all really) I can’t stand gassy drinks anything with bubbles makes it so much worse. Some times I almost feel like things get stuck and I find myself tapping my chest. 

Does your dad have a contact nurse? I’ve come to realise that anything new it’s worth getting checked out. it could be something simple but I’d defiantly run it passed someone. I’m on my second thing that I thought would be ok but eneed up in hospital for!

Has your dad had a biopsy to confirm or news based on a scan? It takes a bit of time to set up everything. For me I had the stent fitted as I was badly Jaundice so it was a couple of weeks before they went to do the biopsy to confirm... I then had a meeting set up with a specialist for when the biopsy should have been in (in my case there were complications so ended up having a second biopsy) it was about a week after this the chemo meeting was in place... and a further couple of weeks before the first one. I found chatting to my case nurse helped as she could give me the information to reassure me with what was happening and the time frames.

good luck for you and your dad 

xx

Hi bells 3681

so sorry to hear you and your dad are going through this ,I have never had or heard of the stuff from your dads nose, or the hiccups, but the hiccups do not really surprise me , I get awfull indigestion after eating and I have to stand up and walk about fir 5/10 mins, then take some Gavascon,

may I suggest you contact your district nurse if the chemo unit he goes to at the very least it will give you piece of mind as to what is going on , I waited 6 weeds from diagnosis to starting treatment , when I was diagnosed I spent 3.5 weeks in hospital and had 6 operations before they got the stent in and working properly , if you are concerned find out who your specialist is and give them a call they are there to help and you have that right , for your sake and your dads,

I am here for you , please feel free to ask any questions what so ever I will always answer as honestly as I can , however I do understand that everyone is different, and I often have questions myself ,