In brief, I was diagnosed with pancreatic cancer at the end of October aged 48. It is not operable and is being treated with palliative chemo. I have completed 6 months of GemCitabine and Cistplatin on a three week cycle, which I coped with well. Unfortunately, we then received news that the chemo was no longer being effective. The tumour was growing again, and I had two small nodules on my lungs.
We negotiated a short break form any treatment with the oncologist and was able to have a lovely week away in Cornwall in June. Everyone has commented on how well I have been, and how we have stayed positive.
Since then I have started on folfirinox and hit a wall. It has been terrible. The first round has made me terribly sick and nauseous, with extra meds I am now doing the second round. Although, I am able to keep food down, I still feel terrible and am really struggling with lethargy. I sleep most of the time. I am bored of doing nothing. My mood has taken a massive dip and I am very tearful. I am seriously considering whether it is worth it, for although it might prolong my life, my life doesn’t feel great. I don’t know whether to just grab what is left of the summer, and spend happy times with my kids (18 and 20), and with my husband. There is never a good time to die, and it fills me with fear, but I can’t help feeling it will be better for them without a long miserable end. We haven’t talked much about what is coming, and I think now is the time to do some planning. What I don’t know is if stopping the chemo will make my symptoms worse or whether there will be a window first. To my great distress, I can’t protect my family from this but can try and start to lay the way for them to follow when I am gone.
Not really sure if I am asking for any advice, just needed to put my thoughts down in writing. Thanks
I am hoping I can get some insights from people who have lived in the UK longer than I have. It looks like I'm in for a distal pancreatectomy. Obviously I have many things that are causing stress, but one I just can't seem to find enough information or experiences with to calm my anxiety. And ironically it has nothing to do with the actual surgery (which I'm feeling okay about).
I am from Texas, and have never experienced a hospital stay where you were in a room with another patient, much less multiple patients like what it seems I'd be in for with NHS wards here. I can see there are private options in the same hospital (Royal Free) but can't really find much on what that ACTUALLY means, or any sort of indication of what it might cost. The only thing I can tell is the surgeon works on both NHS patients and private, so it seems like it could be an option.
Can anyone share their post-surgical experience being in the NHS wards? How many people are you sharing a room with? Is it awful? The thought of being in the worst pain of my life while worrying about disturbing one or more strangers just has me super anxious.
Or alternatively, if you have any experience with the private options, I'd love advice!
I'm in the same boat. Diagnosed with likely MCN, recommending distal pancreatectomy but doing a final confirmation with an EUS soon. I have literally zero advice but just wanted to say you're not alone!
@Audpoet I would say that I want a CT scan with the pancreas protocol. I had the pain in the back and front for a while and it just kept getting wrongly diagnosed. Who knows, if I'd had the CT scan then, how might that have influenced the outcome?
Looking back on the symptoms my fiancé had his back pain started in February/March last year, he was not diagnosed until mid November when it had already spread. By October he had weight loss and vomiting, he did not have any jaundice until a few days before he died. He was 37 years old.
I would think given you have had these symptoms since 2019 and from what I have read pancreatic cancer seems to be a rapidly growing and metastasising cancer in younger people
Thanks for the info! I don't have jaundice and my poo is light brown but yellow colored water. As far as pain, I have that pain too. I feel it sometimes in back but also have it on right sometimes too.
I wanted to mention too about the pain under armpit. It seems to hurt the most when I get the ribcage pain. Also pain shooting into breast too sometimes. Could this be a reaction from pancreas you think?
I saw the GI today and they want to do a endoscopy and colonoscopy. Should I just forgo this and get a CT scan instead? I don't want to go to ER for this and wondering where else I could go.
Thank you for providing this valuable information. My digestive process has become completely become normal and that could be a reason why my dietitian recommended a lower dose of Creon. From what I understood, even after some time, my pancreas will not perform its intended functions and use of Creon will be a long term thing. I will contact your team, should I require any additional information. Also, if required I can share my experience about the Whipple Surgery and things I did, which worked for me.
Thank you for sharing your details and information about the pancreas. My surgery was done 2 months ago and that was the first time I have been warded or being operated. With regard to Whipples, I am sure you can handle that and I can share the following things I did which worked for me.
1. Please learn to separate your mind from your body. You are not the best person to deal with what is going on inside your body. Have faith in your Doctors and medical staff and they will do what is needed. But take control of your mind and thoughts. Always maintain a positive attitude and take one day at a time. Without your knowledge, you will come out of this.
2. Dont google too much and look for more info about Whipples. None of the postings give any valuable or positive advise. You and I are not a standard statistic or always have to go by some one else's experience. Take one day at a time.
3. Mobilize. After the surgery, Try to take 2-3 min or longer walks (at least 5-6 time for a day ) and this will help the blood circulation and your wound will heal much faster. After the surgery, you might feel some tightness in your abdomen and walking and other exercises done by the physiotherapist will reduce this faster and you will get over it. the more time you spend in the bed will delay the healing.
if you need to talk or need more info, I can provide my WhatsApp contact. Please let me know.