Forums
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Forums
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- 339
- posts
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- PCUK WhatsApp and Facebook Groups
- By Support Team,
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- 4.8k
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- Diet supplements to maintain weight
- By antboo-23,
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- 12.5k
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- CA ANTIGEN 19-9 raised level
- By Lcb2024,
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- 1.8k
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- New diagnosis of PC
- By Suzanna,
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- 6.2k
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- Peritoneal metastasis adter whipple advice
- By jessie18x,
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- 2.3k
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- Can't get away from the Concern.
- By Janecav,
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- 860
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- Is there any hope?
- By Jj24,
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Recent Posts
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By Suzanna · Posted
Hi Northern Gem … how did you get on with your chemo … I have had my first today with experience of larynx spasm whilst in the unit which was not very pleasant ..I hope all is going well with you . -
By Jj24 · Posted
I am so sorry to hear what you are going through now after the trauma of losing your husband. I hope they have caught it early and you are one of the lucky ones. Thinking of you and sending strength and positive thoughts x -
By antboo-23 · Posted
Hi An update in case anyone finds themselves in a similar situation in the future-- My mum has had a stable PET scan since my original post, but has ongoing stomach pain similar to what she experienced before diagnosis. Her tumour marker dropped 600 in 2 weeks but CEA was raised at 33 (though not sure what earlier results were). Whilst there was no visible disease progression on the scans, the oncologist has resumed chemo because of her symptoms and tumour markers. Previously the Dr was suggesting Folfox or Folfiri, but has now scheduled a return to gemcitabine / abraxane because of her initial positive response. I was hoping for a longer break off chemo than just a few weeks, but in a strange way relieved she is starting it again next week!! -
By antboo-23 · Posted
Hi, My mum has been prescribed fortisips by the dietician at the hospital which are around 300 cal and 18g protein per bottle. She also has fortijuice which are similar calories but lower protein but she can't stand the flavour, and I haven't found a way to disguise it!! And not rocket science but I try and sneak double cream in to anything and everything I can. She's currently on palliative chemo (sadly no option for whipple's), she is well and has a stable weight All the best -
By Yve Bailey · Posted
Can anyone advise in choices of high calorie supplements, powders to add to meals, shakes etc. for post Whipple's and now palliative care. Man y thanks -
By Suzanna · Posted
Hi Mouse I am sorry to hear what you have been going through … I lost my husband 12 years ago from this dreaded cancer . He was 45 , and have now been diagnosed myself … unfortunately early detection is difficult. I was originally diagnosed with duct dilation which was picked up randomly on a Ct scan for something else .. this prompted an MRI , pet scan and two biopsy , one ended up causing me pancreatitis. The biopsy came back ok so a follow up CT Scan 3 months later showed slight changes .. They then decided to follow up in 6 month scan in April this year which showed a lesion on the body of the pancreas . The biopsy confirmed pancreatic cancer . They are hesitant to operate until a lesion appears because it is such a major operation to have if cancer isn’t present.. I am now awaiting chemo after having the body of pancreas and spleen removed an can only hope for the best . -
By Skippy · Posted
I can understand your anger. It is so very distressing. I've been in your situation. (Twice). 3 yrs ago I'd never even heard of PC. I've thoughts that Dr's give out just so much info in accordance what 'they think' a Patient can deal with, at the time; giving the patient some 'hope'. We too had the swift nhs conveyor belt, a Whipple op; a long recovery back to up to fighting weight, then necessary follow up chemo to mop up any stray cells. Pre op the day before he turned jaundiced, so speed was essential. He needed that 'hope' to get through it all. I've read that many can manage living with it 3/4/5 lucky years. but your right, it's vicious. I do think back now all it gave was extra precious time but that hope was so necessary. Without the treatment I don't think he would have survived as long as he did. He never regretted the opportunity of the whipple operation. We hope for better studies in this area. I am thinking of you. On reading all sorts - blood tests can give 'false positive readings' / lesions can be benign tumours give false readings. Sadly our Sciences haven't mastered much. -
By Jj24 · Posted
So sorry you are going through this. I lost my husband in June and we were never given any hope but he had hope almost to the very end. It is such a brutal, fast moving and stealthy disease. We thought he was doing OK until 2 weeks before he died but things moved really quickly at the end. He died 6 months after confirmed diagnoss, 8 months after suspected PC. I hope you have lots more time with your husband, make the most of every day together. Sending you lots of strength for the times ahead. -
By Me Mouse · Posted
We’ve been on this crazy journey for 18 months. My husband was lucky, PDAC in tail, caught early enough for curative surgery. He did surgery. He was in the 20%. He did 12 rounds of highest Folfirinox cocktail. Consultant said, all gone. Yes, we believed that. Pain never went away. Scans were inconclusive and dismissed as ‘muck’ from surgery. We’ve had 2 months of ‘pain free’. He was never pain free. And after 6 scans being told its ‘muck’, no one (but me) believing the pain, watching the weight drop off, not able to eat, vomiting, he reached crisis. We knew it was back. Weeks before Consultant reacted Only a v stern call from a v caring Consultant convinced him to go to hospital Yeah it’s back. And it’s nasty. No cure. No idea how long we have him for. So there is no hope right now for PC. None at all. It’s a death sentence. My beautiful, amazing husband was told he’d beaten this crappy disease. But that wasn’t true. And yes, I hate that he was given false hope. He has reached out to our MP, he wants to get funding increased to fund a screening research program. Early diagnosis at ‘in situ’ stage is key. No one should go through this. PC is a killer and will remain so unless early detection is routine for me, I was relieved that he was in the 20% curative stage. But if I’d known there was an 80% chance it’d come back within 2 years. I’d question the point of painful surgery, awful chemo… quality of life is key, not surgeon ego. Don’t know how long we have my husband for. Can’t get a straight answer from anyone. No one will give a clear answer. So yeah , there is no hope. None at all. -
By Jj24 · Posted
@Janecav I am so sorry to hear what you are going through with your friends, I dont really have any words of wisdom but as Skippy said, I wanted you to at least feel heard and understood on here. I would say that perhaps your friend who has lost her parents is really struggling herself and maybe feels hurt that you dont reply straight away to her messages as she is grieving too. I do understand, some of my messages go completely unanswered, as I wonder what to reply to a text that just says how are you ? You would think as you are both grieving that you would be able to understand each other better but perhaps neither of you has the resources to support the other at the moment? It is all so new, this grief we are navigating 10 weeks is no time at all especially as your husband was only ill for 11 weeks. It is difficult because some days I dont want to see or speak to anyone and on other days if I do make arrangements I get really stressed or anxious if the plans are changed. I have found it is sometimes the friends I was not so close to who have been the most help to me. I really hope you find the support you need, perhaps through counselling or from other friends, or if not on here.
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