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?
I am sorry to hear about your mother and this is obviously a very worrying time for you all. My husband had pancreatic cancer and I have been around this website for about six years.
I think that I am seeing from your post that although a mass has been seen in the tail of the pancreas that results are still awaited to see if it is cancerous and that if so the consultant suggests that chemotherapy might be appropriate.
Whilst I totally understand that you want to hear other people's experience of chemo my experience over the years that I have been here is that people react in different ways. There can be a lot of side effects but different people experience different ones.
I know it is incredibly frustrating and the waiting seems like for ever but my advice to you is to try to be patient and to await the appointment with the oncologist. They will talk you through what they are trying to do so that you and your mother have a better idea of what is going on.
I hope the appointment is made quickly.
Hello to you,
I've not had PC myself, but my Dad has it, along with kidney cancer and we are in a state of constant worry too! I really empathise.
At this time, his 3 monthly scan has been delayed by a month and this is for somebody who is terminal- doesn't seem in the least bit fair to me, but I can't do anything. I appreciate that hospitals are really struggling, but it would make sense to me that cancer patients are top priority and can't really afford to keep waiting for things.
My Dad was able to have whipple surgery in the summer of 2019, followed by folfirinox chemo, for 6 months. It was harsh, had to be delayed a number of times due to low platelets and was given at 80% strength but he managed 10 out of 12. His cancer was in the head and into the body, along with some lymph nodes. His kidney tumour has been stable.
A short period of recovery and things seemed stable until last early summer, when after his scan they discovered recurrence in his lymph nodes, more recently spreading to his lung, stomach, thigh muscle, chest wall. He is doing amazingly really considering this prognosis- he was given 'months' about 6 months ago. Very recently he has had some chest pain, this is being managed by morphine.
He has had palliative chemo too, this was 16 cycles of abraxane and gemzar, which is a kinder, better tolerated chemo than folfirinox, though the aim of that was to keep things from spreading- it was unsuccessful.
Side effects very much vary, depending on the drugs used, the location, the persons fitness and tolerance etc etc. So there's no real simple answer to this. Dad was relatively fit and strong when he had the folfirinox, slightly less so the second time round but just tried to get with it as best he could. He's a very stubborn 65 year old.
Symptoms are more managed really rather than suddenly improve, though can vary and can be subject to being better tolerated at different times. It all depends what they are and how things are looking.
Its so difficult with cancer as there is no clear path, much of it is just navigated quite blindly, hopefully with the guidance from a good oncology team and regular checks. Everybody has different responses, prognosis, journeys and outcomes.
Its so frustrating when things drag on- I really understand this- it relentlessly plays on your mind and you are the ones dealing with it day to day, seeing first hand how your loved one is and getting anxious. Waiting on news, tests, treatments is always the most challenging and stressful aspect of it.
I've definitely gone greyer over time with this!! Its always been a slow process, but since covid it has become worse.
If you are very concerned and your Mum's health worsens, give 111 a call as they may be able to speed things up and speak to the nurses at PCUK, who are so helpful and knowledgeable about this particular cancer.
Here if you need to update or offload. I hear you, keep us posted xx
Hi we are just at the start of the process, as my partner had his diagnosis yesterday. He is a fit and healthy 59 year old- until a few weeks ago he was cycling 35 miles plus and doing full day walks. We were given the results of the CT scans today, next step a biopsy then possible chemo and immunotherapy. This is our third cancer journey together- bowel cancer in his late 20's then surgery for a precancerous growth in the bowel 3 years ago. Generally, he lives his life in a very positive and 'can do' way. After the last incidence, we asked for genetic testing and he was diagnosed with Lynch's syndrome- a genetic mutation which means his body does not create cancer fighting cells.
He has been having new symptom's (abdominal pains) since February and going through GP/referral to hospital process. Slow and frustrating process however by comparison's, not as bad as some others on the site. Going for a private ultrasound has helped speed up the process of getting to the CT scans and an initial diagnosis. Given his medical history and his recent increase in pain, I was kind of prepared for this outcome however a big shock for him.
Just at stage of telling concerned friends and family. We are both trying to support each other.
No more details as yet about specifics - presenting issues led to an ultrasound which showed lesion on liver. Today we were told that the liver cancer was secondary and it had spread from the pancreas. Surgery is not an option and the cancer is terminal. Accuracy of this diagnosis is put at 80-90%
The doctor we saw was good at finding out what we knew first and in the way that he gave us the news, We have had good support so far from the nurse practitioner.
I have just started looking at this site again (it welcomed me back so I must have looked at it previously...) I am finding it useful to look at the experiences of others.
We are lucky to have good friends (we have been married over 30 years, no children so friends have been important to us) and one has experience of PC through her father. She has recommended the PCUK nurses and site.
Given his medical history, I do feel lucky to have had the life together that we have had, I want to do my best to support him now through this and make some more memories whilst we can. Just wanting to get as much information as I can and deal with this in the best way for both of us