Question: If you/loved one have had chemo, what physical state where you in beforehand and did this contribute to how you coped with it/success of treatment?
I have read through so many websites, forums, posts, even trawling through medical journals to find more information and answers. What I have found really helpful was those who gave a thorough background – I keep trying to find my mum, the same symptoms, positions of tumour etc. – so thought I would do the same (it is a very long post!).
My mum is nearly 71. She doesn’t drink, smoke, and up until six weeks ago was going to the gym three times a week and walking the dogs for an hour each day. She has always had IBS type issues – around two years ago, these began to worsen. She was also diagnosed as diabetic despite having no symptoms of diabetes. In the last six or so months, all symptoms increased, leading to weight loss, lack of appetite and pain.
My mum visited the GP on numerous occasions (blood tests, ultrasound, stool samples all fine). Eventually, she saw a private gastroenterologist – at this time, she had begun to suspect something was going on with her pancreas. After more tests and an endoscopy, it was found she had H. Pylori, but after treating with antibiotics her symptoms continued to worsen. In the midst of this, one of the bloods tests she had with the GP came back as suspicious for a blood clot. A scan (can’t remember which) showed she had a small clot behind her knee. She was given blood thinners, the side effects of which seemed to contribute and increase her stomach pain and lack of appetite. She also began to experience intense back pain.
It got to the point where my mum was in absolute agony, with horrendous nausea, unable to sleep and hadn’t eaten for a week. She went again to A&E and was put on the two week wait for possible bowel cancer. At this point, she asked again about her pancreas, but was told it was fine. My mum arranged an appointment with another private gastroenterologist, again she asked about her pancreas and again, was told it was unlikely. The consultant advised having a CT scan due to her weight loss, going through the NHS, but my mum couldn’t wait any longer, she arranged for a private CT scan immediately.
A week later, she had a video call where the consultant told her there was a 4cm x 10cm mass on the body of her pancreas and enlarged lymph nodes. (From what I have read, most pancreatic cancer is in the head of the pancreas, blocking bile ducts, causing jaundice and changes in stools and therefore found sooner).
Mum returned to her GP for a referral to our local hospital – we were given a phone appointment two weeks to the day of the referral. Again, unable to wait this long for answers, we arranged an appointment with a consultant who both worked privately and for the NHS at the same hospital. The consultant told us the mass was very likely cancerous and was inoperable as there was vascular involvement. He couldn't tell us if it had spread anywhere else. He helped speed up the process for a endoscopic ultrasound and biopsy which she had four days ago. We were given the results of the tests – a 3.6cm mass on the tail of her pancreas. Even this in itself is confusing – where did they look? Has it spread? Why did the CT show one thing and the endoscopy another?
We are now in for another ten days of waiting. The consultant did say as soon as they had the results they would want to begin chemotherapy and this the part that I am worried about. My mum has lost well over two stone in the last two months. Her weight has only now just stabilised thanks to the invaluable advice from the nurses from the pancreatic cancer helpline, who advised creon, fortisip drinks and has helped my mum communicate with the GP over pain control and nausea.
She is still however weak, she barely leaves the house, she is exhausted all the time (probably from morphine), she is a shadow of who she was only a short time ago. Her face is constantly etched in pain and suffering. She is grey and skeletal. Even going to the biopsy took it out of her.
I want to know there is hope. I can’t bear the constant waiting and watching her diminish each day. We are an incredibly close family, my mum, my sister, me and my daughter. I feel like the doctors are taking too long to start treatment – ten more days for the results and then no doubt another week or two to see an oncologist and god knows how much longer until chemo even starts and what state will she be in then?
So my questions are:
If you/loved one have had chemo, what physical state where you in beforehand and did this contribute to how you coped with it/success of treatment?
What side effects did you get?
Were there any improvements in symptoms and if so, how long until it began to work?
Thank you
