My big brother

[BromsgroveSister]

Hello,

On Nov 7th my big brother was given the news that he has Stage 4 pancreatic cancer with liver mets. This was following a couple of months of “stomach bug” symptoms and some weight loss.

My brother is 54.

This has come as a huge shock to all of our family.

He is due to confirm his chemo regimen next week after being* offered Folfinox or Gem/ Abraxane.

The last few weeks has been a rollercoaster of emotions with everyone desperately trying to find out information on best foods, chemo options etc, but in the last week my brother’s emotional health has become really depressive. He’s not been eating much anyway but recently it feels like he is giving up.

Has anyone else experienced this? I am not sure how to deal with this? He just seems to want to sit in silence, eating and drinking very little.

How can I help him?

[Undyddarytro]

I know how you are feeling and i commiserate withyou. The shock when hearing the news is so overwhelming. However, once he begins chemo he will meet other people who are going through the same thing and that might make him decide to become a fighter. We have been going through this as a family for 15 months now and it is horrible. Everyone deals with it in their own way and it is very difficult. I am very lucky that my husband at 62 has taken a very positive outlook and is making the most of just living as normally as possible while he is still feeling reasonably well. The first three or four folifox chemos were difficult but then his digestive problems etc settled and he used the medicines wisely taking anti diarrhoea tablets etc when needed and trying to forsee and plan what to do on the difficult days.He didn't expect to see last Christmas but things have been better than we expected.Has your brother been orescribed Creon? It is essential for him to keep eating and Creon helps him digest. We were not offered it but having Googled, I asked for it and every consultant we have seen since has said that it is a great help. Pack in the colories, add double cream to puddings etc. Eat snacks, oeanuts, chocolate,dips that are sinfully calorific. There are other ways of stimulating appetite that I might not be allowed to post here. Keep fighting.

[toodotty]

Hi Bromsgrove Girl,

I did post last night but the post has got lost, so I will start again. Firstly I am so sorry that you are having to join this forum because unfortunately it means that your brother is in desperate need of help and support, AND so are you.

Firstly you are at the worst point of this journey, you are all in shock and disbelief and your brother is malnourished and sounds depressed, this can also be a real symptom of pancreatic cancer. I totally agree with Undydarytro and he needs nourishing, get to the GP and get Creon and possibly an PPI, contact the nurses here they have a really good fact sheet about using Creon, the GPs underprescribe these. Next get some Ensure build up drinks, also on prescription and use this just like medicine.

He also needs to get up and move about, even gentle walking to keep his muscles working as he will also be suffering from muscle wastage due to malnutrition.

Next ignore what you read on the internet, the UK data is at least 3 years out of date and people are living longer than the figures suggest. Also research your options outside of the NHS as the people who are surviving for years are NOT following the NICE guidelines and are taking supplements and/or undertaking treatment abroad which is not available here.

Finally do not give up HOPE. None of us will live for ever, but also it doesn't mean that we have to die now. Have a look at my blog, with treatment you can get some quality of life back, in my case I am pretty well functioning on all cylinders.

https://www.pancreaticcancer.org.uk/our-blog/2018/november/i-am-a-statistic-of-one-erika-s-pancreatic-cancer-diary/

Good luck and sending you all big hugs,

Erika xxxx

[Undyddarytro]

Although I sounded as if I was coping when I replied to toodooty Erika has really lifted my spirits in her posts. I am a passionate friend of Dr Google but everything is so negative out there when I know that there must be long (longer) term survivors out there. We all need cheering up now and again! By the way my user name is Welsh for "one day at a time"

[BromsgroveSister]

Thank you Erika and Unyddarytro.

I’m sure everyone one in the forum has had the same thoughts but I still keep wondering why him.

My brother has his second CT scan this week which has been requested to see if he might be eligible to join a new trial next week. He is really hopeful that he will go onto the trial otherwise he will be starting his first round of Folfirinox next week. I’ve read that that particular regimen can be really tough so I’m feeling very nervous about that.

Erika thank you for reminding me to have hope. Since my brother’s diagnosis my whole family has gone to a very dark place but having hope makes me think he might be one of the lucky ones.

Undyddarytro, I agree one day at a time is the best way to deal with this.

It is so reassuring that there is a place for people like us to share our thoughts.

X

[Undyddarytro]

From what I have experienced second hand by observing my husband I can assure you that the first three or four are tough. The first time you and your companion are nervous. It is scary, it looks bad. There are people there at different stages. . You feel sh...y. And then the angels who are the nurses explain everything to you and slowly, very slowly you start to breathe a little more easily. They begin by flushing out your picc line which is the way they put the chemo into your body. The machines holding the bags make noises and have flashing lights etc. You do get used to it. My daughter made a concoction of essential oil and gently rubbed her dad's hand and pulse point. She also bought tiny little snacks of nuts, chocolate, small sandwiches, drinks etc. As the chemo goes in the patients seem to need quiet so do not keep chatting away. Just be there. Once released, the best place to go is bed for an hour or so While on the steroids things here have been managable but on the third day all manner of things happen, diarrhoea, lightheadedness, nausea and worst of all the painful constipation. Do take the anti sickness pills and everything else offered and try to bear the pain of cold fingers etc by accepting help. We will all be thinking of you and wish you the very best. As I said the first three or four treatments were horrible, but the 24 th was ( I have no right to say this as I was not the patient) but tolerable.

[Theresa Upton]

Hi Broomsgrove sister, I was given the same diagnosis in September 2018 and for a little while I did 'give up', I had lost a stone in weight, struggled to eat, couldn't walk far and felt like I had been given a death sentence at 58 years of age. I have just had round 4 of folfirinox and I must say things are a lot easier now than they were and I am more determined to live longer than has been predicted, the information on some sights is so very negative. I take creon, steroids as prescribed and CB oil, I am lucky because I do not have any pain and very rarely feel sick, yesterday I did start taking milk thistle (I think I need to take some advice though, not sure if it might mess with the chemo). I do get a bit of diarrhoea but it does not cause me any issues, I have not been constipated but my mouth feels horrible. I have always been a big walker and I do try to walk everywhere, its not always possible, today is my 'dip day', I had chemo last Thursday so I tend to stay in and rest. I wish your brother all the best, there are some very encouraging stories out there. Take care Theresa.

[BromsgroveSister]

So my brother went to A&E yesterday as he was vomiting bile. He was put on a saline drip as he was severely dehydrated (drinking virtually nothing). The hospital did an X-ray to check if there were any obstructions. Thankfully the X-ray showed no obstruction so he stayed in overnight. Today was the day he had his CT scan booked at the specialist hospital to see if he was eligible for the new trial drug regimen. The DGH where he stayed overnight liaised with the specialist unit and the ct scan was done earlier today. Sadly the CT has revealed that there has been some disease progression since the last scan 6 weeks ago. We are all really gutted that this is the case although probably should’ve expected it as my brother hasn’t actually had any treatment yet.

The hospital didn’t say what level of progression or where it has spread to.

My brother is very down now. We are desperately hoping he gets onto the trial which starts next week.

If he doesn’t get the trial then he will start on Folfirinox.

It is good to hear that your experiences of treatment are not as horrific as we are all imagining.

Theresa I hope my brother is able to fight like you are doing. It’s so hard to know what to do when it feels he cannot hear us.

I’m really hoping that the consultant review will inform us that the progression is not extensive and the trial will happen for my brother.

Thank you for listening x

[BromsgroveSister]

Erika, I have just read your blog and it has really lifted my spirit.

Today has been a bad day. My brother was discharged from hospital (DGH) last night but was vomiting bile in the night and this morning. We also still had no news on what was showing in the CT scan.

I spoke with one of the wonderful nurses on this site who advised me to straight to A&E at the large specialist unit where he is under the oncologist and request his admitted.

Thankfully, they have now admitted him and he is on fluids as well as morphine for the pain. They are doing another endoscopy and will review the ct in detail in the morning. They suspect that there is a blockage in his liver as his blood results were not great. I am so glad my brother is at least comfortable tonight.

We also heard that my brother cannot join the trial which is really disappointing. But we may still be able t start Folfirinox, fingers crossed.

I just hope they hurry up and start treatment x

[toodotty]

Hi BromsgoveSister,

It really should not come as a surprise to the specialists that the disease has progressed, with pancreatic cancer this is what happens, and what happened to me. If your brother has jaundice then he will feel even worse, it is like having flu. Don't be afraid of the chemo, the first couple are scary but I saw immediate improvements in my cancer even with the first dose. By round 4 life was returning to normal, I never thought I would see normal again and I was out of pain. Your brother is going to have to be strong, tough and downright bloody minded, but if Folfirinox (FFX) is being offered then he must be fit and healthy. FFX is the best available chemo and can shrink the tumours. I have just finished round 12 and will probably continue with FFX after Christmas, I believe that Milk Thistle has reduced the effects of the chemo for me.

Chin up,

Erika (aka toodotty)

[BromsgroveSister]

So my brother had yet another scan as his bilirubin level is at 70 today. The review showed that his bile duct was 9mm when it should be 7mm which apparently suggests a blockage. So that suggests a further delay in starting chemo. It’s just very frustrating that there are so many delays.

Tomorrow he is having a stent fitted? Can he have chemo straight away or does he then have to wait. Obviously we are aware that the cancer is growing in this time which is worrying.

My brother is also now been fed by nasogastric tube as he keeps vomiting and is also dehydrated.

Is anyone in the same position?

I am finding the lack of urgency in the NHS very frustrating and annoying.

I just want treatment to start so we can see some progress.

[Samsavan]

Hi BromsgroveSister

Going through something similar with my mum.

If they put the stent in , they will ensure

- the stent is working . after the stent is being put in they will keep him in hospital and Check is biliburin everyday to see it’s on a decline. If he has no other complications like infection etc, he will be sent home.

- the stent could be internal ( if all is well) or could be external temporarily until they can put the stent internally.

- they will wait till the biliburin is under 20 for chemo to start.

Now I tell you all this from my experience here in Australia. I am assuming that it will be the same methodology there.

Keep strong , And soldier on. But also look after your self .

Sam.

[PCUK Nurse Jeni]

Hi there,

Thanks for your posts and all the replies also.

In the UK, they will do chemo once the bilirubin levels get to approx 35 or lower.

So long as the bilirubin levels are on the way down, that's all that matters, and this might take a few days.

Clearly, the higher the bilirubin levels are to start with, the longer it will take for the levels to drop.

Hopefully, they will check the levels every few days, and i am sure this will happen as he is still in hospital.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[BromsgroveSister]

Thank you for comments Sam. We really want to hear something positive as it just feels like setback after setback. My brother had the stent fitted on Wednesday 12th but Bilirubin is at 104 today which is disappointing as that’s obviously further delay to chemo.Does anyone have any experience of how long it might take to comedown to the required level of 35? My brother has also been told his platelets are at 97 today so at least for now chemo plans are on hold.

Currently he’s an inpatient at a specialist London Trust, but he is getting very agitated and stressed waiting. I just wish that his treatment was starting soon. It’s horrible to think the cancer is just growing.

I’m finding that the whole family is on edge at the moment and it feels horrible.

I am trying to be as positive as possible. There are so many similar stories of people on this forum who have waited like my family. I hope that things will turnaround soon.

X

[Samsavan]

My mum’s levels were in 170 range, as soon as the stent was put in it came down drastically.

However in the last 7 days it’s only come down by 10. It is still 43 as of yday. So they have said wait another week and they hope it will come down by another 10 and they can start chemo ( may not be full strength chemo). Now because of this my mum cannot participate in a clinical trial we were hoping for her to go in.

We are at the mercy of my mum’s body.

Apparently they cannot do chemo if the bilirubin is high, as the chemo toxicity and bilirubin can be detrimental.

I m feeling your pain. I feel helpless .

And have got nothing but one set back after another .

My mum is 64. To think of a life without her and to think what could be coming is making me so anxious.

On the 25/12 last yr we lost my beautiful mother in law and now this! Life can be cruel sometimes !

Don’t lose hope . Look after your self xx

[BromsgroveSister]

Be hopeful Sam. Your message mum’s bilirubin levels are heading in the right direction which is positive.

I understand your disappointment with missing out on a trial. My brother too missed out on a trial 2 weeks because his bloods weren’t good enough.

Hopefully my brother’s bilirubin level will fall over the weekend and chemo could be considered next week.

I can imagine how hard it is to think about life without your mum Sam, but at this point try and be helpful. I really believe in positive energy and you need to believe that your mum can do this.

I heard that my brother ate a pot of custard today. Sounds quite unremarkable but considering he’s been vomiting for 2 weeks now this is really something to be happy about.

Just take one day at a time. Today is a better day I think.

Hope all our loved ones have a good night tonight.

Xx

[BromsgroveSister]

My big brother has worsened since my last post. He has now been told that his cancer is now too advanced to receive chemo. This is such a cruel blow.

Especially when he was told on the 21st Nov that he shouldn’t “panic” as his cancer wasn’t particularly active so we didn’t need to worry about chemo being initiated in a fortnights time. As a result of that delay the cancer has spread. Bilirubin is now at 148 despite a stent and the consultant does not think this is likely to fall.

My brother is still being sick after feeds although he is still trying to eat and drink himself. Tomorrow they are going to transfer him to another hospital for an endoscopy to try and enable him to keep his feeds down.

I am so angry that he is now being denied the opportunity of treatment because there were initial delays in the system which meant he wasn’t treated with any urgency.

Has anyone been in this position? Is there anywhere to go from here? X

[KeithKerry]

BromsgroveSister wrote:

> My big brother has worsened since my last post. He has now been told that

> his cancer is now too advanced to receive chemo. This is such a cruel blow.

> Especially when he was told on the 21st Nov that he shouldn’t “panic” as

> his cancer wasn’t particularly active so we didn’t need to worry about

> chemo being initiated in a fortnights time. As a result of that delay the

> cancer has spread. Bilirubin is now at 148 despite a stent and the

> consultant does not think this is likely to fall.

> My brother is still being sick after feeds although he is still trying to

> eat and drink himself. Tomorrow they are going to transfer him to another

> hospital for an endoscopy to try and enable him to keep his feeds down.

> I am so angry that he is now being denied the opportunity of treatment

> because there were initial delays in the system which meant he wasn’t

> treated with any urgency.

> Has anyone been in this position? Is there anywhere to go from here? X

This is awful and perfectly encapsulates what Erika has been saying about how lethargic we are about treating PC in this country.

I am so sorry to hear about this and I do feel your pain, as I'm sure do others that read and post here. This disease just seems so utterly unpredictable. It seems to do nothing and then everything. Having said that, we really do have a lot of learning to do in the UK when it comes to PC and getting treatment underway. An awful lot.

We are just getting it completely wrong far too often.

[toodotty]

Hi both,

I became jaundiced 3 days before I started chemo so had full dose Folfirinox with a blocked bile duct. The speed with which the jaundice disappears depends on the stent fitted, the plastic stents do not work as well as the metal ones. I had a plastic stent due to a nickel allergy but my oncologist slightly delayed my second treatment and gave me a reduced dose for two rounds. Yes the side effects were much worse than once the jaundice cleared. Make sure that your brother and mum drink plenty of fluids to help flush out the liver. My drink of choice is very diluted lemon barley water.

Erika.

[BromsgroveSister]

My big brother passed away at 6.18am 26/12/2018.

He never had the chance of chemotherapy as the delays in the system meant the cancer had spread extensively through his liver.

He was official diagnosed on Nov 7th despite being back and forth between GP and A&E from July 2018. That meant he passed 6.5 weeks after official diagnosis.

This has been such a horrible journey and I pray that everyone on this forum does not have the same experience as my poor big brother.

17.01.64- 26.12.18

[drtzzr1100]

I am so sorry for your loss no words can express how horrible this disease is I hope you find some solace in knowing he is out of pain now. My husband is on end of life now he was diagnosed on 1st October 2018 after starting tests in July 2018 so much more needs to be done to find and treat this evil disease earlier to give our loved ones a chance to fight it.

All my love and prayers I send to you x x

[PCUK Nurse Jeni]

Dear Bromsgrove sister,

We are so sorry to hear about this sad news - we know how difficult this has been for you all and how devastated you are.

On behalf of all the nurses here, we would like to extend our deepest sympathies to you and your family - please know that you are in our thoughts.

Kindest regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Samsavan]

BromsgroveSister wrote:

> My big brother passed away at 6.18am 26/12/2018.

> He never had the chance of chemotherapy as the delays in the system meant

> the cancer had spread extensively through his liver.

> He was official diagnosed on Nov 7th despite being back and forth between

> GP and A&E from July 2018. That meant he passed 6.5 weeks after

> official diagnosis.

> This has been such a horrible journey and I pray that everyone on this

> forum does not have the same experience as my poor big brother.

> 17.01.64- 26.12.18

I am so sorry to hear about your brother’s passing.

No matter what is said , it will hurt for a while.

Take solace in knowing he was in pain but not anymore.

Sending you hugs and I hope he rests in peace .

Sam x