Endoscopy

[poppystorey]

Had this procedure. Need a second one .I definatly have this evil disease.I was given creon .I don't have a problem with weight loss .my mass is at the tail of my pancreas .any ideasuch how long one can survive this .poppy Story

[Mrsk3ll3y]

Hi poppy. I’m so sorry you’ve been diagnosed with this awful disease. They have advanced in their cancer treatments so really it just depends on how well your body responds to the cancer or treatments or both. Try to stay positive and stay healthy. What symptoms were you having that lead to this horrible diagnosis?

[poppystorey in reply to Mrsk3ll3y]

It's a long story I've had tummy problems for a long time .IBS. gallbladder problem .I went for scan for gallbladder in November which showed the mass. But I've been sick after eating for ages .now they've told me what it's apart. From back ache I seem quite well .I'm just praying g for a miracle thankyou for replying.stay safe Poppy Storeyxxx

[Jow27]

Hi Poppy, how are you doing and where are you up to with your treatment? I am now waiting for a EUS and hoping to have a MRI next week to find out what is going on. Can I ask if you have had any problems with the colour of your urine or your bowel movements?

[poppystorey in reply to Jow27]

Hi no problems with bowels but my urine is very dark in a morning .going lighter as the day go on .started on new med creon. Aids digesting your food . I go for second endoscopy to Manchester next Tuesday .do take care .

Poppy Storey

[Jow27 in reply to poppystorey]

Hi Poppy, how did the endoscopy procedure go today and why did you have to travel to Manchester? In your last post you mentioned that you are taking Creon, why are you having to take this medication? What are the next steps for you. I am still waiting for my biopsy results.

[poppystorey in reply to Jow27]

Hi ,when I went for endoscopy on 14. 5.the surgeon just couldn't get to the part of my pancreas she needed to be for tissue sample and measurement.so arrangements were made at Manchester as it could be done quicker.What a fantastic hospital and specialist Mr Alistair Mackin..I have been prescribed Creon as I wasn't digesting my food and haven't been doing for a long time .they are an enzyme which help this .I am now eating ok don't get full straight away.and toileting improved.I'm feeling better now than I have done for a long time .hopefully when the findings of this latest endoscopy are seen a treatment plan can be started .Do take care stay safe .PoppyStorey

[Jow27 in reply to poppystorey]

Hi Poppy, what an uplifting post and so pleased that the endoscopy went OK. Which hospital did you have the procedure done at and how long will you have to wait for the results? I hope the Creon helps, how did they know that you weren’t digesting your food as I think I have a similar problem.

[poppystorey in reply to Jow27]

I was getting very full very quick so my food was coming back up.which in turn affected my toileting. Going quit frequently with not much notice to get there.I am now normal eating normal and feel ok .but still have to face the fact the cancer is there.and I want to start treatment as soon as possible these days are mine I want to enjoy what I can .same goes for this virus make the best of the time you have .will keep you in my prayers

Poppy Storeyx

[Jow27 in reply to poppystorey]

You are a lovely lady Poppy, always thinking of others when you have so much to contend yourself. I will say a prayer for you too tonight. Is that a Lhasa Apso that you are cuddling? I have 3 Lhasa Apsos and it is breaking my heart thinking that I might have to re-home them if my diagnosis is not good. Did they say today when you might get the results of your biopsy? I have asked for the procedure that you had yesterday, were you sedated and how long did it take?

[poppystorey in reply to Jow27]

Only just got message from 7 days ago. Yes I was well sedated and in for 40 mins don't really remember much about it .my local hospital arranging tests Blackpool Victoria Doctor Soo. really good .My little dog is a shid-zhuh. That is an old picture Gizmo died 5 years ago and I have another one Alfie.hope your endoscopy goes well .PoppyStorey

[Jow27 in reply to Jow27]

Hi Poppy, hope you are coping OK, have you heard anything yet about the EUS procedure last week?

[poppystorey in reply to Jow27]

Hi yes things seem to be moving.apparently I've been diagnosed with a neuroendocrine tumor.it is one of the slowest growing which gives me more time.and I can have treatment which will be life extending and improve my quality of life..Manchester hospital were fantastic as was Dr Maikin . Today I have to da a 24 hour urine sample. And then tonight I must fast for a blood test tomorrow.after I've handed in my sample.so things are on the move .it has taken 7 months to get this far.that's not couniting the endless times I have complained of feeling ill .hope your days going well stay safe God Bless Poppy Storey

[Jow27 in reply to poppystorey]

Thanks your reply Poppy, it is good that you have got the results so quickly and that the tumour is one of the slowest growing rumours. Is it your local hospital or the MRI that is arranging for the blood and urine tests to be done and whee will you have your treatment? I think if it hadn’t been for the Covid-19 pandemic things would have happened a lot quicker. How are you tolerating the Creon?

[poppystorey in reply to Jow27]

I'm finding creon ok I'm eating better an digesting my food better.although my inr as been all over the place but they are coming twice a week and adjusting dose accordingly.everyone has been so kind. I just wish sometimes that's you didn't have to be ill.for people to be kind .we need more love and kindness in this world Poppy Storey

[Jow27 in reply to poppystorey]

I agree Poppy, stay strong and keep us posted on how you are doing. Did they say how big the tumour was?

[poppystorey in reply to Jow27]

Yes it's about 1 inch square . my pancreas is 6 inche's it hasn't spread anywhere else. Will let you know any progress I make .Poppey Storey

[Jow27 in reply to poppystorey]

Hi Poppy, such good news that it hasn’t spread. If you are opting for chemo it could shrink the tumour so that surgery might become an option. Please let me know what treatment they offer you. I am still waiting for an EUS and worried that my diagnosis is going to come too late.

[poppystorey in reply to Jow27]

If it is stressing you waiting .get on to PALS at the hospital and see what they can do .God Bless Poppy Storey

[Jow27 in reply to poppystorey]

God Bless you too Poppy, any news on your treatment?

[poppystorey in reply to Jow27]

Been today had pharmaceutical medicine iodene by injection. It's like a dye in your veins .then went back 4 hours later for full body scan .back tomorrow for another scan. Will let you know how it goes .my hubby worries himself sick .God Bless Poppy Storey

[Jow27 in reply to poppystorey]

Gosh Poppy, you seem to be having a lot of scans. Have they mentioned anything about chemo yet? How are you in yourself, have you seen any weight loss and has the stomach pain gone away now that you are on the Creon? They seem to be doing a lot of tests. God bless you too Poppy. xx

Xx

[poppystorey in reply to Jow27]

Had another scan today don't have to go tomorrow.they have all they need .the reason for so many scans they inject the die in then scan it for 3 days it's called a tracer .yes my pain has improved as with Creon being enzyme replacement I'm now digesting my food properly no sickness or getting full to quick.no weight loss . You take care stay safe God Bless.poppyStorey

[Jow27 in reply to poppystorey]

You too Poppy, God bless you. xx

[Jow27 in reply to Jow27]

Hi Poppy, hope you are coping OK. Any more news on your treatment? Thinking of you.

[Jow27 in reply to Jow27]

Hi Poppy, hope you are OK, any updates on your treatment?

[poppystorey in reply to Jow27]

High got a phone call yesterday regarding the scans I had last week. They are waiting for blood test result.they seem to be looking at having me on injections once a month and that can slow tumour right down .I'm really pleased .I'm 76 now so it might take me through a few more years.I truly value my time now and enjoy my life even under the present circumstances. .you take care God Bless Poppy Storey

[poppystorey in reply to poppystorey]

Sorry Joe how are you keeping ? Very rude of me not to ask .poppy

[Jow27 in reply to poppystorey]

Hi Poppy, so pleased that you are getting the right treatment and this will give you as much time as possible. I am still waiting for a diagnosis, having a telephone consultation next week which hopefully will lead to an EUS. Been in touch with PALS, running out of options in the UK. How are you coping with the Creon Poppy? I am waiting for a stool test result as I think I am not digesting my food properly and my bowel motions are not normal. Is your urine still dark in the morning Poppy?

Joan xx

[poppystorey in reply to Jow27]

Hi yes love just the first visit .creon is working fine and I'm digesting my food much better. I think my gallbladder is playing up .which is what started this investigation. Lot of very low tummy pain and feeling really out of sorts ..do hope you soon get sorted . Love Poppy Storeyxx

[Jow27 in reply to poppystorey]

Sorry to hear you have had some abdominal pain and are out of sorts Poppy. Have they started your treatment yet as this might sort the pain out?

[poppystorey in reply to Jow27]

No,I'm still waiting it's the waiting that wears you out.but I'm feeling a lot better today .the problem is I have multi problems going on .Do hope you are feeling ok .

Poppy xx

[Jow27 in reply to poppystorey]

Pleased to hear you are feeling better Poppy. The waiting is awful, things seems so slowly in the UK. Hope you get started on your treatment very soon. x

[Jow27 in reply to poppystorey]

Good morning Poppy. Just thinking of you and wondering how you re doing. Any updates on your treatment and how are you feeling? x

[poppystorey in reply to Jow27]

Himy love how are you,I am doing ok treatment going well have my scan on the 30th to see how everything is going on get the odd off day but that's to be expected.injection are bearable,I guess it's all about pain threshold.do hope you are keeping ok.And have enjoyed some of this sunshine.God is Good and will take care of us .speak soon

Love Poppyxxxx

[Jow27]

Hi Poppy, just wondering how you are doing and if you have any updates?

[poppystorey]

Good morning,I have just got home from having echo cardiograph. To make sure my heart is ok for the treatment for tumor.I see oncologist at 10 am on Thursday.and will then get starting date. I'm getting a little weary now it is 9 months since first seeing a doctor. But pain has been present for much longer.

However I need to stay positive .there are so many sad and poorly people at this time .Do hope you are keeping OK God Bless You .Poppy Storey x

[Jow27 in reply to poppystorey]

Stay strong Poppy, good news that you have a treatment plan in place and that you will be starting treatment very soon. God bless you Poppy xx

[poppystorey in reply to Jow27]

Hi sorry it's late.had first injection of somatuline today .It went fine .I feel better now treatment has started and my out look seems brighter .how are you feeling ? Take care God bless you Poppy .xx

[Jow27 in reply to poppystorey]

Hi Poppy, just checking on how you are doing and how the treatment is going. I hope you haven’t had any nasty side effects and that you are tolerating it well. Thinking of you. Jo x

[poppystorey in reply to Jow27]

Hi Jo doing OK but lock down is getting to me a little.but try not to grumble.I go for my 2nd injection on the 11th. I have had a few off days but coping ok Do hope you are ok thanks so much for being in touch.God Bless you .love poppey

[Jow27]

Hi Poppy, not heard from you for a while. Hope the treatment is going well and you are coping OK. Please give us all an update if you feel well enough. God bless you, Jo x

[poppystorey in reply to Jow27]

Hi Jo how are you keeping ,do you know any more yet .there is so many with this evil disease.im having a few off days .but the good ones are good ..we have to stay possible and grateful for what we have I do hope you go on ok .take care Jo Love poppey Storey.x

[poppystorey]

Hi how are you getting on ,I'm doing ok tumor has shrunk by 1 third .so I am so pleased for answered prayer.thankyou.

I think about you often hope you are keeping ok have you had any results yet .

Take care my love stay safe .

Love poppey ..

[Jow27 in reply to poppystorey]

Hi Poppy,

Only just seen this message and I am thrilled to learn that your pancreatic tumour is shrinking and you have had such good news. The power of prayer is a wonderful thing . I too have a guardian angel looking over me as the MRI and second CT Scan showed no evidence of cancer. The severe indigestion I have been suffering from has improved and I am no longer having to take medication on a daily basis. I hope and pray that your treatment continues to be effective Poppy and that you might be eligible for surgery in the future. Please keep in touch and let me know how you are doing. God bless you. Jo xx

[poppystorey in reply to Jow27]

DearJow what wonderful news ,Halleluliah. It's so good to hear some good news.Im quite stable and prognosis good my oncologist forecasts that it's likely I will just age like any other as this tumor is so slow.but I do have other under lying probs I have pacemaker,heart failure etc but whatever Im grateful for my life so far,I will keep in touch. Take care Love Poppey.xx

[Jow27 in reply to poppystorey]

Hi Poppy, hope you are coping OK with the medication and your symptoms haven’t worsened. Just wanted to wish you a happy and peaceful Christmas. God bless you Jo x

[poppystorey in reply to Jow27]

Hi how are you ,I've had trouble login into site .How are you keeping, I've had 2nd review my tumour has shrunk 50% .I'm keeping quite well ,just have to accept i do things a lot slower now.But I'm so grateful for answered prayer,I still have a good quality of life .they have found out that my tumour was visible in 2016 ,but it didn't get noticed ..I do hope you are keeping OK hope to hear from you my love .Love Poppy xxxx