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shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Feeling totally lost

Postby shelda » Sun Feb 14, 2016 4:21 pm

I've been a guest on the forum since my mum was diagnosed last July. She was told it was stage 4 and inoperable as it was involving the blood vessels, it has also spread to her lungs and they think her ovaries. She hasn't taken too well to chemo, she started gemcitabine and abraxane end of August but due to neuropathy the abraxane was dropped in October. Her oncologist is a palliative oncologist at our local hospital and I've been told the local specialist hospital in xx have passed her care to them due to it being inoperable, which I'm vexed by as I still feel she'd access more options there!!! Her last scan in January showed the cancer has stayed stable no growth, but mum seems worse, she has hardly eaten since Xmas constantly nauseous she hasn't been able to have chemo since before Xmas due to low platelets and her magnesium levels being out of whack. How do we get her eating when she feels so sick and she's in so much pain she's really out of it, she is taking zomorph, oramorph and paracetamol, she's diabetic too...I'm feeling so lost and if I'm honest the support from her Macmillan nurse is rubbish, feel like as they gave her a 6-12 month diagnosis they just do the bare minimum for her. At her last appointment they told her she will have to go on iv meds if she doesn't start eating as they won't be working properly on an empty stomach...my dad, brother and I just don't know how to help her and we are all struggling with how rapidly she is deteriorating it's so scary, she's only 63 with 3 young grandchildren and we just wanted the chance to make memories but it feels like we are losing her already. xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Feeling totally lost

Postby Proud Wife » Sun Feb 14, 2016 7:32 pm

Hello Shelda

Really pleased you have decided to post although very sorry to hear your mum is having such a tough time, that's not right.

First of all, there should be no reason for your mum to be in such pain. When my hubby was diagnosed, he was first of all given oramorph and once we knew how much he needed to control his pain, he was given the same amount of morphine as a slow release tablet (MSR) which he takes twice daily. Whether that would work for your mum is of course something for the specialists but please, even if its your GP that you have to go back to, ask if there is something else your mum could try but insist that her pain is finally taken care of.

With regard to her appetite, has she been put on steroids? Also, when my hubby was on steroids but still feeling nauseous, he was told to take Metoclopromide 3 times a day which is an anti sickness tablet. That was the turning point for us and there was a day and night difference once he started taking those. He was skin and bone but has now gained over 4 stone since April last year when he too was diagnosed as stage 4.

I know nothing about creons but there are plenty of others on here that do, so I am sure they will advise if that's something too that could help your mum get back eating.

What are her sugar levels like?

I totally understand about you wanting to make memories. There's still time. Just start making a noise and don't stop until someone takes ownership of this and can at the very least make your mum comfortable.

Good luck and let us know how you get on xxx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Feeling totally lost

Postby shelda » Sun Feb 14, 2016 8:32 pm

Thank you proud wife for your response, I am praying it is just a slight blip in her treatment, I think I'm going to try and search out her Macmillan nurse whilst we are at the hospital tomorrow having her magnesium infusion and ensure she speaks with the oncologist on Tues, I can't make her appointment Tues due to my own drs appointment. Mum and dad seem to happily go along with what they're told as if they don't want to rock the boat. She was on steroids whilst having abraxane but now it's just gemcitabine she isn't, that's a question I've already got prepared, she has recently changed anti sickness meds not sure what they are called. Her sugar levels are often too high, but she does seem to have got them lowered by taking bitter melon (Kerala juice). Sadly I feel the support in our area is lacking greatly hence why I've finally turned to this forum, but when I have mentioned information I've been given by pancreatic cancer UK my mums Macmillan nurse shrugs it off saying they are too "London centric" which I said surely pancreatic cancer is pancreatic cancer wherever you live and in my view should be treated the same whether in Wales, London or wherever!!! Thank you for helping give me more fire in my belly to get something done at next couple of days appointments. Sending love and positive thoughts to you and your family xxx

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Feeling totally lost

Postby sheena » Sun Feb 14, 2016 11:09 pm

Hi shelda sorry you are in a up hill struggle.I too have to fight for every scrap of info and felt once my hubby was diagnosed we were left to our own devices.being on this forum has been a godsend ,I know no what I need to do /ask/say ,and I now stand up proud and shout loudly when I need answers.keep pressure on and if you don't like nurse then tell them to find you a new one.hope you find out what you need to know x

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Feeling totally lost

Postby Didge » Mon Feb 15, 2016 10:32 am

Shelda, I would urge you to phone the nurses on here if you have not done so already. I am slightly confused as you say your mum has been passed to palliative care and yet she is still receiving chemo? I am not familiar with that scenario. I have not heard of anyone who has entered palliative care still being treated with chemo but I may be wrong! I don't know where you are (obviously not London!) so I don't know how easy it would be to get a second opinion anywhere else if that were appropriate. But do have a chat with the nurses on the helpline - they are so knowledgeable and hopefully will be able to help x

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Feeling totally lost

Postby shelda » Tue Feb 16, 2016 12:38 pm

Thanks for your replies didge and sheena. Spent the day in hospital with mum yesterday as she needed a 6hr magnesium infusion but she was so poorly, as I mentioned she can't eat and is even struggling to take in much fluid, she was so shaky, nauseous and anxious on the way to hospital we had to turn round and go home and I had to phone the iv suite to say we may be late due to her feeling so bad. Once we got there they put her in a more private side room with a bed, the nurse was really concerned as she could barely walk and was shaking like a pneumatic drill!!! It took an hour to get the canula in place, she was sick as a dog bless her, I've never seen my mum so poorly and weak all I could do was rub her back and offer her sips of water it's so unfair seeing someone you love so much in such pain and discomfort, no-one deserves this and especially mum she's one of the most selfless people I know she nursed my dad back from the brink of death in her thirties, sadly dad was left disabled and mum took on the role of carer, she nursed her mum through a brain haemorrhage, does so much for me my brother and our kids...it feels like the centre of our world is collapsing!!!
Her oncologist and two of the chemotherapy nurses came down to see her yesterday and he wants a CT scan as he's worried the cancer may be causing an obstruction in the small bowel, and they've also said if she is still this poorly tomorrow morning she'll probably need to go in for iv fluids. As of an hour ago she hadn't eaten still, was very nauseous and can barely face fluids so I think tomorrow is a forgone conclusion.
We are in North Wales didge but not far from Liverpool it's just across the water. we were told she has palliative chemo to try and slow it down, her last chemo was Jan 19th and her Dr said yesterday until she's eating again chemo is on hold.
Love to all xx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Feeling totally lost

Postby Didge » Tue Feb 16, 2016 1:33 pm

Ah now I understand! She is having chemo with an intention of extending her life which is the case for most inoperable PC although a few have beeb known to become operable. I do hope she gets some relief soon as it is hard to see a loved one so poorly. This is a very up and down cancer in terms of how a person feels from day to day so fingers crossed. Xx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Feeling totally lost

Postby Didge » Tue Feb 16, 2016 1:39 pm

Also has she been considered for folfirinox? She seems relatively young. Obviously she needs to be better before any type of chemo though but my partner tolerated folfirinox much better than gemcitabine! X

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Feeling totally lost

Postby shelda » Thu Feb 18, 2016 12:36 am

Evening, mums nice palliative Macmillan nurse came out yesterday and has upped mums oramorph dosage, she's still feeling very nauseous and was only sick once but she did seem a little brighter in herself today, we spoke to the oncology dept just to say she didn't feel a need to go in as she was trying to up her fluid intake, but they said if she has anymore vomiting she needs to go through a and e and they'll touch base with her again tomorrow. No luck again when asking if mum would benefit from Creon as she doesn't have any issue with her bowel movements, but I said she has the food aversion and terrible burping and reflux, I think I may speak to our gp about that as I believe they can prescribe it??
Didge - folfirinox was mentioned at the very beginning but as she didn't get in well with abraxane her oncologist felt fol would be too toxic for her to handle and sadly my mum agrees and doesn't really want to try it :-(
Thank you for your advice and support, what brave wonderful people you all are X

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Feeling totally lost

Postby Proud Wife » Thu Feb 18, 2016 5:56 pm

You included Shelda! How's your mum's day been today? Any luck with the GP? xx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Feeling totally lost

Postby shelda » Fri Feb 19, 2016 12:06 am

Hi proud, thank you some days I don't feel brave at all but you have to wear your mask and keep them tears at bay. I couldn't get to mums today as my little tot had a temp and runny nose, but she sounded chirpy enough, not in as much pain but very nauseous still but no vomiting, she had managed 4 forkfuls of the lasagna I made for her and dad yesterday so small steps, as long as she keeps hydrated I feel that's the main thing, I just hope they get this CT sorted to rule out the bowel obstruction. No luck getting in at my gp to discuss Creon they were on half a day!!! She did manage an hour down in the town today even if it was paying bills. Fingers crossed she's even brighter tomorrow as its dads birthday this weekend and she wants to be well enough to do something with the family xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Feeling totally lost

Postby Proud Wife » Fri Feb 19, 2016 11:24 am

Morning Shelda

You may not feel brave but trust me you are! Wearing that mask and keeping them tears at bay is nigh on impossible for me. Sounds like you have a lot on your plate caring from you mum and then with a poorly tot. That's going to make things tricky for you as I really wouldn't have your little one around your mum - we run a mile whenever we hear someone cough and without wanting to tempt fate which is my biggest fear, my hubby's not had one infection since chemo was started last April.

Press on with the GP - if they don't have any appointments, speak to the receptionist and ask for the doctor to add you to his/her telephone list. Your mum should not have to wait. Excellent news that she managed to get out of the house, even if it was to pay bills! Hopefully the fresh air might have perked her up?

I will keep my fingers and toes that she's good for your Dad's birthday, birthdays just have to be celebrated!! Take care xxx

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Feeling totally lost

Postby shelda » Tue Feb 23, 2016 1:25 am

Well I've my fingers crossed mum has turned a corner, the new antisickness meds seem to have kicked in and she's not feeling as nauseous, her Macmillan nurse increased her slow release morphine on Friday and she seemed slot brighter today and she was requesting fish from a lovely little place that hold lots of cherished memories, so me and my daughter went for a little drive with mum and dad today, the sun was shining and for once it felt almost normal...until she made me cry that is!!! I'm usually very very good and don't let the tears out in front of mum but she was telling me how proud she was of me and that she's so sad she won't see my kids grow up. The reason she was saying all this is because I have done something completely mad and out of my comfort zone to raise funds and awareness for Pancreatic cancer UK, I've just started 8 weeks training before I compete in a Pink collar boxing match!!! Arggghh, I'm so nervous and after yesterday's session I ache in places I didn't realise I had!!! This is the start of my healthy living, I need to lose a few stone and mum doesn't want me ending up diabetic like she is and it scares her to think if I don't sort myself out now that I'd end up like her with this awful disease :-(
She has her CT on weds but doesn't see the oncologist for almost two weeks after that. I'm going to speak with my Dr tomorrow about Creon's I've managed to get an appointment.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Feeling totally lost

Postby Didge » Tue Feb 23, 2016 12:50 pm

Shelda you are amazing! I only ever manage the Obstacle course in the Race for Life which is actually quite fun but 8 weeks training then a boxing match! I can understand you getting tearful with your mother's words but you can be proud of yourself too for what you are doing x

PCUK Nurse Jeni
Posts: 1084
Joined: Mon Jun 14, 2010 1:30 pm

Re: Feeling totally lost

Postby PCUK Nurse Jeni » Tue Feb 23, 2016 12:57 pm

Hi Shelda,

This is great to hear about your mum. And great to hear you had a nice time out with them both.

Great news to hear that you have managed to get an appointment at the gp. Before you go, may I just say that the information you posted in an earlier post when you asked about creon ("no luck again when asking if mum would benefit from creon as she doesn't have an issue with her bowel movements") is inaccurate information, sorry to say. There has been a lot of research on this topic, and the results of this are that bowel and abdominal symptoms are a LATE SIGN of the need for enzymes. The person may well be suffering from PANCREATIC EXOCRINE INSUFFICIENCY (PEI) for some time before they actually get to the stage where it is affecting their bowel movements. So, just because her bowels are ok does not equate to her not needing enzyme replacement. We do hear this a lot from people, who are always told they don't need them as their bowels are OK, but actually, as I said above, this is often a sign of a condition which has been there for much longer than since the person gets bowel issues.

I hope this makes sense?

Just to give you more information on this, so that you have it for the gp appointment, I can email you directly the information regarding pancreatic exocrine insufficiency, and pancreatic enzyme replacement therapy (PERT).

I hope this is ok?

Kind regards,

Jeni, Support Team.