Side effects of immunotherapy or end of life?

I'm only looking for people's experiences as obviously i know no one can tell me what is what, but other members on here may have had a loved one go through immunotherapy.

My best friend of only 46 has terminal cancer. It's in her bowel, groin, liver, lungs and bones and may be elsewhere. She had 6 months of chemo but the cancer started to grow again within weeks. The consultant then started to give her combined chemo/radiotherapy but this was stopped after a few rounds as  it wasn't having any effect.

She was then offered immunotherapy before the "end of the line".

She has had two sessions but become extremely poorly and is in so much pain with a huge bloated stomach when she is stick thin everywhere else. Until very recently she has felt reasonably well in herself but even before the immunotherapy she was starting to feel sick/be sick, sleep a lot, has lost her appetite and was suffering with pain in her stomach and back and i know it is her liver that was the worst affected with the cancer. She is also concerned she is passing blood in her stool again - the cancer began in her bowel/anus. She is now on anti sickness medication and in the last few days has been prescribed morphine because she's literally in agony and can't get comfortable.

She was diagnosed early summer last year and was initially only offered one session of palliative radiotherapy so it was a poor prognosis from the start but she is still here nearly 18 months later. She has never wanted to know timescales etc.

Obviously she has told her consultant and he just says she can't expect to see improvement yet, however, i am concerned that the stomach swelling is ascites as i can't really find any info on it being a major symptom of immunotherapy. I guess i am trying to prepare myself that she may only have a few months left. I know immunotherapy can work wonders but i've read only for around 15% of people who have the treatment. 

  • It should be possible even for your friend's GP to check via ultrasound whether it is likely to be ascites. A very hard belly is also a useful indicator for ascites. If it is ascites, draining can often even be done as an outpatient appointment. When the fluid accumulates, the muscles in the front get (over)stretched and the body's normal centre of gravity changes. Compare it to wearing a large rucksack in front of you all the time or suddenly becoming heavily pregnant - that's what can cause pain.

    Morphine has its own disadvantages and the need for it may resolve after a good drain. Worked for my husband for now, but everyone is different.

    My husband's oncologist refused to have anything to do with arranging ascites draining and said we'd have to deal with that through the GP. It was done as inpatient in the end, but that's because other things needed sorting as well (calcium, sodium, potassium). The most recent drain (2.5 weeks ago) was 6 litres, one week before they got 8-9 litres out. At the moment things appear to be holding up, we're hoping to get another couple of weeks at home.

    There's also an option of installing a permanent "tap" for draining; it could become infected or clog up, however if it works, visiting nurses can let off fluid without the need to attend hospital.

  • Thanks for the reply and sorry you are going through this.

    My friend just says she looks 9 months pregnant. Am guessing if the consultant thought it was ascites he would do something about it. She is also battling addiction so tbh i don't think the morphine will make much difference as she has such a high tolerance. I suppose i'm just thinking is this the beginning of the end. A relative of mine had immunotherapy a few years ago and had no real side effects at all so it's hard to know what symptoms are related to the cancer growing. It began growing literally a few weeks after 6 rounds of chemo and the second lot combined with radiotherapy didn't work at all so her effective treatment kind of ended back in March and she's only just had 2 sessions of immunotherapy because she had to be approved.

  • You said "if the consultant thought it was ascites he would do something about it". Yes, that seems like common sense to most people. However, not having a medical background myself, I am aware there could be certain indicators/intervention triggers that make them spring into action. With current pressures on the NHS, I have the feeling that the usual guidelines are being stretched from time to time.

    When ascites is drained, the fluid gets checked. Different colours indicate a more or less serious context. It is also important to watch how soon it starts building up again; I heard some people are fine for months after a good drain, others have to get it done quite frequently.

    So... having ascites on top of other health trouble is limited information to work out how it affects life expectancy. It's just one piece in a jigsaw. You need the experts' analysis for the full context. And even then statistics vary hugely: try googling "life expectancy ascites", then add one of the words "untreated", "treated", "refractory". I guess it shows one tendency: in the end ascites can be controlled and that condition itself is not a likely cause of death.