13 April 2017 at 8:00 am #54301
I’m here on behalf of my Mum who has “Well differentiated neuroendocrine tumour affecting the liver, ileum, mesentary and para-aortic and mesenteric lymph nodes”, the main tumour is on the Ileum. She’s been sufferring since 2014 but recent pain is having quite an impact on her life.
She suffers from crippling pain in the stomach/abdomen, leaving her coiled up in the foetal position and in tears, this can go on for hours without relief. Nurses and Doctors seem lost on what to do next. This is a list of current meds:
Somatuline – 120ml injection every three weeks
Omeprazole – 20mg capsule daily
Oxynorm (Oxycodine Hydrochloride) – 20mg capsule up to four times daily
Amitriptyline (Amitriptyline Hydrochloride) – 10 microgram capsule every night
Fentanyl – 800 microgram sublingual tablet up to four times daily
Fentanyl – 50 microgram & 12 microgram transdermal patch every three days (these have just been stopped this week)
Laxido – once per night
Buscopan (Hyoscine Butylbromide) – four per day
Atenolol – 100mg tablet once per day (blood pressure)
I’ve only just found this wonderful site and I’m working my way through the wealth of information it contains. I just wanted to post this to see if there’s any suggestions from anyone else that’s suffering, maybe you’ve experienced similar pain and found something that alleviates it?
Thanks in advance for any response. Keep fighting.13 April 2017 at 8:02 am #54302
I forgot to mention my Mums age if that has any bearing, she will be celebrating her 66th birthday in a couple of weeks.13 April 2017 at 1:59 pm #54308
Welcome to the forum. So sorry your mum is in so much pain. I am sorry I cannot help with any ideas to help with the pain. She certainly has a long list of medication. I am assuming she is being treated by a Net Specialist team, if not then perhaps that is something you need to pursue.
There is also a wonderful nurse – Nikie Jervis who can give advice and suggestions. I am sure you will have seen her comments on some of the other queries.
It would be good if the pain could subside enough for her to have a half-decent birthday.
All good wishes to you and your mum. Well done for being there for her. I appreciate the support I have from my children.
Pat13 April 2017 at 3:56 pm #54309
Hello Greg, and a warm welcome from me too, so much medication, I don’t know most of them. I think it would be a good idea to have a word with Nikie, she usually looks at the postings, but you can e mail her direct, or ring the office. her e mail is [email protected] the foundation also have produced an excellent net handbook, it is available from the shop, which you will find at the top of the page. Yes, hopefully your mum is being looked after by a specialist net team, there is a link for this too, and I really must write this down, but I do know Nikie has posted it somewhere, very recently but the way I have found it is click on at the top Net clinics and research, click on UKINETS website, click on clinical practice, and you will find the map. Hope you can find some answers very soon, I am so glad you mum has you to do this for her. I would add, if it helps you to know, I have a pnet and my medication list is the monthly injections of Sandostatin, Nutrizym 22, pancreatic enzymes to digest my food, life long penicillin [because i have no spleen] the very occasional paracetamol, or Ibrufen because the monthly injections can sometimes give me very bad joint pains, and one low dose [2.5 ml lisinopril] of blood pressure, omeprazol – this very rarely, and I think that is all, can’t think of anything else, apart from extra vitamin D and B12. not that we are all the same of course. Please let us know how you get on, Carole.14 April 2017 at 5:35 pm #54310
Very sorry your Mum is in such pain.
I think it good advice to speak to Nickie.
I take several of the same and Constipation can be a problem.
Hope she is up to enjoying her birthday.
Lin16 April 2017 at 9:49 am #54312
Pat, Carole and Lin, thank you very much for taking the time to reply. I have purchased the NET handbook and since passed it on to my Mum so will be ordering another soon.
Her NET specialist is Dr. Weickert at Coventry & Warwickshire Hospital but they really don’t seem to be able to manage her pain. She was with me yesterday and, as has become normal, she was in crippling pain for hours. Apparently she was the same throughout last night. I don’t know what to do. There doesn’t seem to be a pill that works. I didn’t realise her list of meds was that long for a cancer sufferer but your comments have informed me otherwise. Maybe it’s the meds causing the pain?
She spent a week in the hospice at Cov & Warwick but I really can’t see what help that was as her pain has become more frequent since leaving there. She no longer has any good days. The physical pain is unbearable and now there’s psychological issues with her knowing there is nothing more that can be done, she’s overdosing on what she has to try and kill the pain.
I keep reading about alternative treatments that aren’t available on the NHS, but they are expensive with no guarantees. Immunotherapy looks very promising.
I’m lost. I’ll continue to read and research as I have been doing, there’s always more to learn, I’ve only just found this place!
Thanks again for your replies, when I’m not on such a personal quest I’ll take the time to reply to other posts If I can be of any help.
Happy Easter.16 April 2017 at 10:23 am #54313
Hello Greg, [my husbands name is Greg, but short for Gregor] I am so sorry about your mum, and of course I can’t comment about the drugs she is taking, because I don’t know enough about them, but they have been prescribed by a specialst net team, but I would say, please don’t, in desperation, turn to other alternatives, I am sure you will find all the help you need about Nets from the netpatientfoundation, – you need to talk to Nikie, she the is the one to advise you on this, and what else may or may not be available. I am glad that your mum is being looked after by a specialist team, but if it would help, then I am sure a second opinion may put your mind at rest, again, Nikie is best to advise you.
We all tend to look on the internet for answers, and much of it is out of date and not always true. Please come back when you have spoken to Nikie, a few of us are always here to chat to, we have all gone through similar issues, and we can at least chat together, but nets are so different, and no two people are the same, just take care of yourself, and your mum, you will get some answers soon, I am sure. Hope your mum reads the booklet, it does cover everything, speak soon, Carole.
Just an extra thought, what about your mums diet, is she eating something that she would be best not to? worth checking this, but this is covered in our net handbook, I think, I haven’t read through it all yet, and has mum seen a dietician? Carole.
16 April 2017 at 10:35 am #54314
- This reply was modified 8 months ago by dabber.
Oh, Greg, please do try to have a Happy Easter, and I would like to wish everyone who looks at our postings, a Very Happy Easter. and remember, live for today, and tomorrow’s strength will come.
Carole.16 April 2017 at 10:39 am #54315
I was just about to say the same as Carole, my advice is speak to Nikie.
I know from experience Opiates and Fentanyl can cause dryness in the bowel, constipation and abdo pains but that is not to saythe same is causing your Mums pain as she has a lot of problems.
Many of us go to NETs Centres of Excellence ( I go to Royal Free in London who are excellent and Carole goes to Christies, who I believe are in the Manchester area – she has nothing but praise for them).
It’s not easy to get hold of anybody over Easter weekend but if you ring Foundation and speak to Nikie she always has a positive attitude and offers good advice.
Thank you for Easter Greeting an I wish you and Mum Peaceful one.
Lin16 April 2017 at 12:43 pm #54317
Just a quick thanks for the replies, I’ll definitely get in touch with Nikie, though I will expect miracles from her with all this praise! 😉
I’ll also look into those Centres of Excellence and reply again here soon.16 April 2017 at 12:52 pm #54318
Great Greg, being positive works wonders, in fact, positive anything is better than negative nothing, stay cheerful, Carole.16 April 2017 at 11:14 pm #54319
Hi Greg, A little belated but welcome to the forum. It’s my husband who has nets in his ileum and liver, diagnosed in 2009. Everything has been said already but just wanted to say that I hope your Mum soon gets sorted out and her pain levels decrease. Nikie will almost certainly be able to help with advice but it’s unfortunate that Easter is here in that respect. First thing Tuesday, you need to try to contact her as your Mum certainly needs some extra help.
Sending my very best wishes to you both and do come back to us and let us know how things progress. Keep positive!
Jenny18 April 2017 at 9:52 am #54327
Dear Greg, I am just putting together a reply for you – please check your email as I have gathered some diagrams to help explain what may be happening. I am so sorry to hear of your mother’s difficulties – abdominal pain has many causes, but from the information you have given here and in your email, it sounds like the issue may be due to partial / intermittent bowel narrowing. You haven’t mentioned whether she has had a recent abdominal CT and clinic review.
As has been mentioned above a diary noting when and what’s she has eaten along with recording symptoms may help – however in the short term it may be that a soft diet may help ( to rest the bowel), however I would strongly recommend a formal clinical review by her specialist NET team.
I’m going to send you an email, but am also happy to discuss by phone as this may help clarify information and allow for any further questions. I am around today – 07557147698.18 April 2017 at 10:35 am #54329
Hi Greg – I’m so sorry to hear about your mum. If it’s any consolation (I suspect it’s not really…) my partner has a similar NET, seems to be suffering similarly, and is taking similar medications, though not quite so many at the same time.
We live in Belgium where he’s having PRRT, and he has access to high quality care, certainly in terms of nuclear medicine and scans etc. I’ve been frustrated that they don’t seem to be able to manage pain very well. Though I think it is genuinely difficult for doctors to find the right mix of painkillers for each individual – symptoms and side-effects vary so much from person to person.
Alan did apparently have less pain when on Fentanyl patches, but they knocked him out completely (certainly the 50mg ones which they reduced to 37), and slowed his metabolism – so he hardly got out of bed at at all and lost more weight. He is already very thin so they advised him to change the Fentanyl patches every 2 days instead of every 3 – if your mum is underweight too, that could be a factor in the patches’ effectiveness.
They switched him to Oxycontin, which I believe is the slow-release version of Oxynorm, so he now has 2 doses of Oxycontin every 24 hours (30mg and 25mg), plus Oxynorm on demand (c 6x10mg a day). He’s more alert on this regime but has more pain.
The medication which I feel has been the most effective – in reducing pain, improving mood, and increasing energy and appetite – has been a corticosteroid called Medrol. Alan was prescribed this before Christmas as a temporary boost. Unfortunately he couldn’t take it long-term, apparently (not sure exactly why – liver toxicity? addictiveness?) so he came off it in January and the difference was clear. To me at least, though he was less keen on Medrol, he thought it changed his personality / made him more aggressive.
I do think it’s worth persisting with the doctors and with your mum herself, to try and find the balance which works. Mental attitude / positivity is of course key as well, though it’s easier said than done. It may be worth looking at counselling, including specifically on pain management, and depression… I send you all my best wishes, it is really hard for us carers to see our loved ones suffering, so good luck with it all.
Nicola19 April 2017 at 7:48 am #54333
Pat, Carole, Lin, Jenny, Nikie and Nicola, thank you all for your replies, they are very much appreciated. I will take more time over the weekend to read and reply.
Hi Nikie and thank you for putting together an email for me. If you’ve sent it to me can you please re-send as I haven’t received it yet.
Mum went to the Doctors yesterday and has had a better day and night. I’m not sure of any details yet as I only get to see her at the weekend but will provide a more detailed update hopefully this weekend.
Hope you’re all okay.21 April 2017 at 3:35 pm #54346
Dear Greg – email stuck in drafts – doh! But now sent – please let me know if not received. Kind of spoiling the impression the others gave you of me I know . . .but hope it helps – and as I have said in my email if you have any questions please feel free to contact me – I’m in London Monday – but around rest of the week . . .Nikie21 April 2017 at 6:50 pm #54348
Wow Nikie, such an informative email, thanks a lot for that 🙂 I’ll reply here again during the weekend, may I paste and quote your email Nikie?
To anyone reading this and thinking about registering on the forum, go for it and say hello or post your concern, it can do nothing but help.24 April 2017 at 7:49 am #54358
I’m not sure why it’s taken me over two years to find this place but I’m already grateful I have. I hope Nikie doesn’t mind me pasting her email to me here, I think it may be of use to others in a similar position:
…From what you are describing it sounds as though your mum may well be experiencing intermittent small bowel obstruction, especially if constipation can be ruled out. This is not uncommon in NETs where the small bowel is affected.
As you can see from the 1st page (EDIT: Sorry couldn’t see a way to attach an image, Greg) – food once through the stomach then receives enzymes from the pancreas to further break it down before it passes into the small bowel – where most of the nutrient absorption takes place. The food passes through by segmentation then peristalsis (diagram 2).
In NETs what can happen – is because these tumours can release serotonin – small fibrous bands can develop throughout the small bowel and mesentery (diag 4) – causing intermittent kinking of the bowel. A kind of tethering/gathering up (a bit like the kinking of a hosepipe) – however due to the peristaltic motion the kinking becomes unkinked -but when it happens can cause moderate to severe pain, mimicking obstruction. As well as interrupting the flow of food through the bowel, it can also impair full blood circulation to the affected area (see diag 3 for blood supply) which can also cause pain. Once the kink is unkinked by the action of the bowel wall, blood flow returns.
If you also have a look at our handbook Section 2 pages 32-33 – this may help explain the above process. Unfortunately there is little that can be done to reverse the fibrosis, however there are strategies to help cope with the symptoms including appropriate pain relief. A soft or liquidised diet can help maintain nutrition without giving the small bowel too large a food lump to digest – would recommend dietary advice.
Also review by medical team re surgery – this may not be possible however – and in some cases may not be of benefit – however if there is a particular area of the bowel that is most affected, bypassing this can help ( it is vital to assess risk benefit of surgery – also possibility of emergency versus planned surgery – a potential issue if she is at risk of the intermittent narrowing /kinking of her bowel becoming complete obstruction).
If the pain worsens or she becomes rigid with pain, rather than curling up and especially if she becomes nauseous or vomits – she would need emergency review (A&E). (See our blue wallet card on page 33 of section 2 for signs and symptoms requiring urgent review) A scan at this time may highlight the area of concern and allow for appropriate intervention (nb they would not have to withhold pain relief to do the scan).
Her medications are all appropriate to try to help manage her condition however ongoing review as to effectiveness is required. Buscopan can help – as it relaxes the small bowel – but doesn’t address the underlying cause. “Rescue shots” of short-acting Octreotide may also be of benefit – but this would need discussing with her NET specialist team.
I’m not sure if this information helps? I would suggest perhaps a talk through with Louise Davies – the NET CNS at Coventry regarding options for treatment (I’m not clear on whether surgery has/was ever discussed?) and symptom management.
You can also ask for a second opinion from one of the other Centres of Excellence. This is no reflection on the current team – and many people with NETs do this, as a reassurance that all bases are covered. Each Centre has gone through the same strict accreditation process, but some may see more of a specific problem than others – and getting advice from colleagues elsewhere can often add, rather than detract, from practice.
A very informative and useful email, I hope others find it handy, thanks Nikie 🙂
I took my Mum out for an early Birthday meal yesterday and we both had a lovely roast beef dinner. Just after finishing her apple pie dessert she started feeling light headed and had to put her head down on the table before nearly passing out. This has started happening quite often but usually after walking around, not just sat at the table. Minutes later she started getting the pain in her abdomen/stomach and we had to leave.
I don’t know how much pain is involved in living with cancer but my Mums pain seems excessive. She’s sufferring this intense pain nearly every day now and no longer has the confidence to drive so it’s having quite an impact on daily life. I guess figuring out exactly what’s causing the pain is the challenge.
Nicola, did Alan suffer any sickness from PRRT? My Mum, Lyn, had three lots of this and it made her very sick. The treatment had no effect on her main tumour (Ileum) but had a slight reduction effect on her metastasis. She wouldn’t consider any further treatment due to how poorly it makes her 🙁24 April 2017 at 1:45 pm #54363
Hi Greg – thanks for sharing Nikie’s message, and thanks to Nikie for sending it! It’s very helpful indeed, so useful for us to have access to this kind of knowledge on the Forum, so sympathetically and clearly conveyed. I’ve ordered the NET Patient Foundation handbook and will pick it up next time I’m in the UK.
You ask whether Alan suffered sickness from PRRT. Yes, some nausea and vomiting following his two rounds of PRRT to date, but exhaustion and weight loss have been more of an issue, and he’s also had quite a lot of pain both times (until the doctors adjusted his painkillers).
Unfortunately Alan was hospitalised last week with a new complication – ascites (fluid in his abdomen), which has also been painful. All focus is on that at the moment; it seems to be caused by portal hypertension resulting from the liver metastases, and probably exacerbated by the PRRT. I suspect it might lead to his next PRRT round being delayed or cancelled, though it has apparently been effective, stabilising/reducing his tumours. One step forward one step back, but that’s just the way of things, we’re learning.
Bon courage, as they say here, and look after yourself (as well as your mum…)
Nicola25 April 2017 at 6:10 pm #54375
Thank you so much for sharing your email from Nikie and thank you Nikie for all that information. I found it very interesting as Dave has his tumours in the ileum and liver and has the carcinoid syndrome, so the section about the serotonin causing fibrosis may well feature for Dave in the future. I will now know what to look out for should problems arise because there have already been small changes for Dave in that area.
Meanwhile Greg, I do hope your Mum’s pain comes under control very soon. Keep in touch.
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