Well enough for Chemo?

[Leah256]

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 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? Or is this in addition to another mass on the body? 

 

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 a stone in the last six weeks. Her weight has only now just stabilised thanks to the invaluable advice from the nurses from the helpline, who advised creon, fortisip drinks and has helped my mum communicate with the GP over pain control. She is still however week, 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. 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 

 

[Gaffer]

Hi Leah256

Im sorry you are on this scary road.

Everyone is different and there are no right or wrong answers, but just sharing what knowledge I have regarding my husband who sadly passed away last year, aged 56.

In his case it was PC but had spread to the liver. I’m not sure if your mum is able to have the Wipple procedure- has this been mentioned? (Not an option in my hubby’s case cos of spread). My hubby was fit at the time of diagnosis (age 54), worked as a fitness instructor (the irony) but did lose a lot of weight between diagnosis and receiving chemo. (Had to wait bout 2 months) However from advise from the fantastic nurses at PCUK he received creon which gained him some weight which he was able to maintain. Because of his fitness levels the oncologist said he would be suitable for chemo (folfirinox- but there are other options)  and he did tolerate it reasonably well. He started off at 100% but this was reduced to 80% as the first round was not too good but subsequent rounds were reasonably ok. In total he had 21 rounds and remained stable for well over a year before sadly things started to deteriorate.  After chemo he was given steroids for a few days and this helped his appetite and to maintain weight. Prior to chemo though a few days before bloods are taken and this determines if that particular round will go ahead. In his case if liver enzymes were up or white blood count was up it wouldn’t go ahead but this may be different in others I don’t know. So he could have rounds of chemo and then all of a sudden be cancelled because his bloods were not in the correct range. There are quite a few side effects of chemo but might not necessarily have them all though think tiredness is a big one, feeling sick, numbness in fingers, sometimes diarrhoea but after chemo you are given specific meds to help with the side effects and he was given a help line number to phone- though you do have to wait. Certainly the chemo kept things stable for a time but of course it is a very personal choice whether to have it or not. I would say be armed with as much information as you can, order some of the leaflets from pcuk and phone the nurses- I certainly don’t know where we’d have been without  them . I wish you and mum all the very best .

 

[Lornacath]

Dear Leah256, I read your post with tears in my eyes your mums story had lots of similarities to my own mums who sadly passed away 10 days ago. My mum never made it to Chemo. I hope your mum does and that it gives her more time with you. 

Wishing you all the very best xx

[Skippy]

As you probably have read each patient differs. My bro was 75 non smoker, non drinker, very fit too like your mother. He did have a thrombosis in his leg and was put on Warfarin. He had no symptoms at all, merely a sudden itchy rash all over his skin. He complained of having no energy.  He had regular blood tests only due to his intake of warfarin tablets and it was during one such blood tests then, he was urged to hospital for 'further tests'. I can only salute our hospital, as within 3 months of all tests similar to your mother's he was in having the Whipple op on his tumour. Even after his op he was weak, but creon was the saviour to his meal intake. We read on every type of dietary notes we could find adding weight lifters powders to our own blender foods. He did gain weight. He attended for gembicide? type of chemo 6 months after his op to " mop up stray cells" he managed the attendance well too. They decided on that type, rathet than Firefox which may be more stronger. He had no nausea to mention just an overwhelming tiredness lasting 2- 3 days per week.  I've heard that  chemo can delay the spread, even decrease the size of a tumour. Each day the medical world become better in the treatment and we pray for it. Its well known as the silent killer. I hope you can stay positive in your thoughts and way find a way forward right now day by day at this time, we were forever hopeful along the path of his treatments, trusting the hospital with their advice. 

[Leah256]

Thank you so much for your replies and I'm so sorry to hear how PC has affected each of your loved ones. It is a truly terrible disease and heartbreaking watching and feeling so helpless. 

 

We got the results from the biopsy a couple of days ago - it's locally advanced inoperable adenocarcinoma, which I think is stage 3. So far, there is no sign of spreading. We are seeing the oncologist this coming Friday for treatment options. 

 

My mum seems to be doing a bit better at the moment. She is moving in with us and while stressful, it's been a good distraction for all of us, clearing her house etc. I think the pain is mostly under control, although every week or so, she has needed to up her morphine dose. She is now on 30mg slow release, 10mg oramorph for breakthrough pain and paracetamol every four hours. She still wakes up in the night, needing more. She stopped being able to tolerate fortisip with pain and vomiting after, even with taking Creon before, so now we are trying fortijuice which is less creamy. She is also on her fourth different type of anti-sickness tablets too as none of them have worked so far. It's strange, she really does seem stronger and like she has more energy, even though she is not eating anything and is continuing to lose weight? 

 

I'm still extremely worried about how she is going to cope with the chemo. Does anyone have any experience of clinical trials or other types of treatment like Nanoknife? 

[rogs]

We had asked similar questions last year, when my wife's pancreatic cancer was first diagnosed. 

At that time there were essentially no ongoing trials in the UK that would have benefitted her, and there was a suggestions (albeit an informal one) that her age (she was 79) would probably count against her inclusion in most trials. 

That may seem unfair, but apparently it make sense 'clinically'? ...Always worth asking the question of course.

 

According to this page : https://www.pancreaticcancer.org.uk/information/treatments-for-pancreatic-cancer/irreversible-electroporation-nanoknife-for-pancreatic-cancer/what-is-ire-nanoknife-for-pancreatic-cancer   NICE is suggesting the IRE (Nanoknife) should only be used in research studies at the present time. Quite what that means I'm not sure....  Again, questioning the appropriate professionals specifically may help?

 

We were concerned about my wife's ability to be able to cope with the side effects of chemo - which in her case was only going to be palliative anyway.

In the event, the chemo itself (GemCap) produced very little negative side effects. What was far more devastating were the infections caused by the chemo weakening her immune system. These required emergency intravenous anti-biotics on 2 separate occasions, and it was these infections that  caused the most concern and distress.

In the end they decided that further chemo would not be in her best interests. Once that decision had been taken, her overall sense of well being actually improved quite lot, strange as that may seem.

Our journey is now over, but looking back at what I now know, I think we would have concentrated more on controlling symptoms to help maintain the best quality of life in the immediate future, rather than running the risk of seriously reducing that quality of life with what can be catastrophic side effects of chemo. (In our case chemo was only being used in a palliative capacity anyway).

Everyone is different of course, but I'm now much more in the camp of how to optimise the wellbeing of the patient today, rather than trying to 'buy' extra time with palliative chemo, with the high risk of seriously degrading quality of life in the immediate future ..  

But these are really difficult decisions.....

[Leah256]

Thank you, Rogs, for replying. We saw the oncologist for the first time yesterday and it wasn't what I was expecting at all. He was very positive, although concerned about my mum's current physical state. He was of the opinion that as the cancer is causing all her symptoms the only way forward would be chemo - and as quickly as possible. He is putting her on Folfirinox with the first session next Friday for 6 months with the hope the tumour will shrink enough for surgery. 

 

He did say though it would have been a different matter if he'd seen her a few weeks from now. As amazing as the NHS is, if we had stuck to that route and not paid for the first consultations with both the surgeon and oncologist privately, we would still be waiting for her to have an endoscopy and by the time she would have been seen by an NHS oncologist, it would have been too late. 

 

I am really worried about the treatment. I have read so much about the side effects of Folfirinox. The oncologist seemed to down play them a bit - she might be tired, a bit sick (my mum has already tried four of the main anti-sickness meds and none of them have worked so...?), and the risk of infection. At this point though, it doesn't feel like there's another choice. Her symptoms are so bad that her quality of life is getting less every day. It all felt very surreal, if I'm honest, as if we've been preparing ourselves for the worst and then being told there is hope and everything will be fine, and then seeing my mum vomiting in the car afterwards from the pain meds and the whole day really taking it out of her and wondering what on earth is going to happen after she's been treated with something as powerful as Folfirinox?

 

He didn't really comment on what happens if she can't tolerate the chemo or it doesn't work or anything negative at all really - I think this might be because he asked my mum how she is dealing with it all emotionally and she said, she just wants to know one step at a time and not further ahead. Unlike me, who wants to know the minute detail of everything. 

 

The biggest thing the oncologist said though was she needs to eat! She hasn't eaten anything for a month, just having one or two fortisips at day. He told her to view food as medicine, i.e. force it down no matter what. I don't know if she will be able to. 

[rogs]

Good to read of a positive  encounter! .... As you say, had you had to wait further for the NHS, any chemo offered then would have probably only have been palliative.

Now at least you have a goal to aim for. If the Folfirinox does manage to shrink the tumour enough for surgery to become possible, then an actual cure may also be possible! Good to hear that the oncologist is being that positive.

The chemo 'journey' is so difficult to predict.. Some folk seem to sail through, whilst others have a really hard time. No way of knowing it would seem?

And as I mentioned in my earlier post, the added risk of secondary infections can make things very difficult. ...Again some people don't  suffer from that so positive thoughts needed there I think!

First things first though. As the oncologist said , your mum really does need to eat.  She is going to need to be as strong as possible  - physically - to be in the best place to come through the course of chemo successfully.  Sounds as if you may need to bully her a bit at the moment - for her own good!

Emotionally, things are likely to be a real see-saw of course, but with a positive outcome as the final goal that is hopefully enough incentive to try and eat more in the immediate future.

I wish your mum (and you) the very best of luck, in this next part of your journey...

 

 

 

[Kerra]

Hi Leah

So sorry you're going through this.

Your story sounds very similar to mine.

My dad was very poorly and had lost so much weight, had ascites in his abdomen and was incredibly weak when he was finally diagnosed in hospital.

We prepared ourselves for a couple of  months at the most, but his oncology team started chemo in a palliative capacity. He responded really well and is still with us almost 4 and half years later.

We're having some concerns with him now as his cancer has changed, but we are hopeful of more treatment once he's been stabilized again.

Don't give up hope!

I pray your mum responds well and that you get much more time together xx

[Leah256]

Thank you for your replies. That's so great to hear, Kerra, that your dad recovered after being so unwell!

 

To give an update now. My mum had her first chemo, Folfirinox, the reduced strength of 75%. She became very ill, partly due to not having eaten for so long and from nausea/sickness/diarrhoea. It got so bad she could barely drink any water. The day before her next chemo was due, we found out her blood count had not recovered and due to the dehydration, she had to spend a week in hospital on fluids. Her second chemo session was therefore delayed by two weeks. Her cancer markers, however, had gone down slightly from around 5,900 to about 5,600 which was very good news. She finally had the second chemo last Friday, reduced to 50% this time, and seemed to have a lot less side effects, but in the last couple of days she has really struggled again with sickness etc. We will have to wait until this coming Tuesday to see the results of her blood test. 

 

Overall, she is not great. She is has lost another stone in the last two weeks and can barely move from her bed to the sofa. Her feet are incredibly swollen - I keep asking nurse/doctors/even the GP, but no one seems to comment other than it's just another side effect. She is now managing half a bowl of very water porridge in the mornings and a fortijuice in the afternoon but we are aware this is not enough. She is also struggling still not drink enough water. 

 

I have found my mum's oncologist to be quite difficult and impatient. He started off very enthusiastic, giving us the impression, Mum would need six to twelve sessions, have the operation and then be fine. He won't give a prognosis, which I can understand on the one hand, but on the other it is incredibly frustrating not to be given an overview and most importantly, choices, beyond either Folfirinox or nothing. 

 

I am also concerned about the chemo now being only 50% - again, something the oncologist didn't tell us about or explain the implications. I found out from the nurses when I took my mum for her second session. 

 

Has anyone had their dose reduced by so much? I have searched and read through medical journals but can only find info on the standard 75% reduction.