A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Bryansie
Posts: 16
Joined: Tue Jun 16, 2015 9:58 am

Brother with inoperable pancreatic cancer

Postby Bryansie » Thu Jun 18, 2015 7:28 pm

Hi,
I am sure my posting is like everyones on this forum.
My brother told me he had a pain in his stomach 8 weeks ago and went to his DR's, he was sent away twice being told to take parecetamol,two weeks later he was rushed in to hospital with D.V.T on his right leg, the hospital did some tests and said they had found many small nodules in his stomach and a 3cm shadow on his liver, they could not do the biopsy on his liver for 3 days as they had given him warfarin. He had the biopsy and a week later they rang him with good news, it was not cancerous,sadly that was short lived as 2 days later he was taken back into hospital with D.V.T in his left leg, they could not understand why as he was on warfarin, when they did a biopsy on his stomach they found that the not so big nodules 2 weeks ago had grown very quickly, another 2 days later, after many more tests he was told it was terminal and nothing they could do.
I am struggling, as is he, to understand how or why they would give such promising news and then in the next breath come back with devastating news.
He is on the highest medicine for DVT, it is not warfarin,he is sitting at home unable to do anything because of the dvt, I feel he has no support and cannot understand why they are not doing anything else, they did offer him chemo, but when he asked would it help take the pain away they basicaly said no.

I would really appreciate if anyone had any ideas as to what options he has, he was 56 last Thursday.

Thank you for reading this.

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

Re: Brother with inoperable pancreatic cancer

Postby Didge » Thu Jun 18, 2015 9:39 pm

This cancer can be very difficult to diagnose and sometimes tumours have parts which are non-malignant and parts which are which means biopsies can sometimes mislead. I also know that pancreatic cancer can sometimes cause blood clots which seems to have happened in your brother's case. Chemo can sometimes help with pain if it shrinks a tumour which is causing pain. If he is young and fit which 56 would be considered to be, they will consider chemo, probably folfirinox if they think he can take it. My bf tolerated that much better than the gemcitabine which is also sometimes offered in conjunction now with abraxane as a first treatment. Good luck and I hope your brother gets some treatment soon. There are also some alternatives he could research but this is very much an individual choice. Please also remember that you can ask for a second opinion maybe at one of the specialist hospitals on this site if he is not already at one - plus ring the nurses - they are very helpful and give good advice.

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Brother with inoperable pancreatic cancer

Postby Sueoliver » Thu Jun 18, 2015 9:55 pm

Hi I am sorry about your brothers diagnosis! I hope your brother gets some treatment very soon. Do you have an oncologist? The nurses on this forum would be able to answer your questions try and ring them. I hope he gets a treatment plan in place very soon. Sue

Bryansie
Posts: 16
Joined: Tue Jun 16, 2015 9:58 am

Re: Brother with inoperable pancreatic cancer

Postby Bryansie » Thu Jun 18, 2015 10:38 pm

Thank you Didge/Sue for taking the time, not only to read my post but to reply to it.
That's the thing, he went to a specialist hospital 10 days ago to discuss chemo, he declined the chemo,from what he has told me I feel he was advised that the chemo could possibly drain him leaving him physically worse off then not having it, he was told it is an agressive type and we are looking at weeks rather then months.
I travel upto London to see him every week and see his lovely young life ebbing away.
The only treatment he is receiving is clexane top dose for his DVT,Morphine for pain and paracetamols as and when.
DEVASTATED is an understatement, I have to hold back my tears, he has always been my rock,my hero like everyone on this siteI ask the question why!!!!!

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

Re: Brother with inoperable pancreatic cancer

Postby Didge » Fri Jun 19, 2015 10:49 am

If that is your brother's choice and is backed up by the hospital then I would research some alternative therapies if he would consider them. At least they will not have the weakening side effects. And if he is not interested then all you can do is support him and make sure he is as comfortable as can be. Does he have family living with him? I do feel for you and your brother. My bf is younger than your brother and facing leaving 4 young children. It really is an awful cancer and I can understand your shock at the sudden and devastating diagnosis. We are all here to support you though as best we can. We are all in the same boat.

Fifi

Re: Brother with inoperable pancreatic cancer

Postby Fifi » Fri Jun 19, 2015 5:56 pm

Sue,

Sorry to read about your lovely brother. Someone else badly treated. Have you asked to see another oncologist? Have you spoken to the nurses on this site?

Surely he would be able to have a gentle chemotherapy?

I would really recommend you speak to the nurses on here. They can help you with what to say to the specialists at the hospital. Like Didge has said, I would really ask for a second opinion here.

Leila xx

Bryansie
Posts: 16
Joined: Tue Jun 16, 2015 9:58 am

Re: Brother with inoperable pancreatic cancer

Postby Bryansie » Thu Jun 25, 2015 4:02 pm

Thank you leila/Didge/Fifi,

I have just come back from spending 2 days with him, once again we discussed chemo and he has decided NO, I have already discussed alternative therapies with him, at the time he said he would try anything but now I feel he has accepted his outcome and what little energy he has is to enjoy his love of nature.
Thank you

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Brother with inoperable pancreatic cancer

Postby Sueoliver » Tue Jun 30, 2015 10:51 am

Sue this disease is so awful and I can feel your pain. The support you give your brother is amazing and what he needs. We have to respect these decisions however hard it is for us.
Stay strong. Thinking of you.
Sue x

Bryansie
Posts: 16
Joined: Tue Jun 16, 2015 9:58 am

Re: Brother with inoperable pancreatic cancer

Postby Bryansie » Wed Jul 01, 2015 10:21 pm

I am trying to stay strong, I leave my brother each week feeling so lost and unable to do anything to help.He told me that the nurses had come round and discussed D.N.R he got upset and said he had decided to sign the dnr form, seeing him get upset puts tears in my eyes I try not to let him see me cry I love him so much.
He and his wife decided to down scale their home and enjoy working less, all this has had to continue as they sold their home before he got ill, he has stayed in two family homes since he got ill as their new home needed work doing to it (5 weeks work) he told me yesterday he does not think he will get to see it, I am so angry, he is the sweetest kindest funniest person I have ever known.
My life will never be the same.
Sorry just needed to get this off my chest.

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Brother with inoperable pancreatic cancer

Postby sandraW » Wed Jul 01, 2015 11:58 pm

Don't worry that is what the forum is here for, PC is such a wicked disease, and always seems to pick the best people, just lets hope your brother gets to spend time in his new home and enjoy it. take care sandrax

Fifi

Re: Brother with inoperable pancreatic cancer

Postby Fifi » Sun Jul 05, 2015 1:43 pm

I am so sorry to read your latest post.
I cannot imagine what it must feel like for the patient, but to be asked about DNR as well, that is just too much. They asked me that, when my Dad was in hospital. It was the hardest decision of my life, and it completely broke me. I am just grateful that they asked me, rather than my Dad, as it would have destroyed his mind.

Your post is so incredibly sad. It is so devastating to see a loved one so sad.

I wish I could say something to help, but I know that there are no words. I just hope so much, that your lovely brother does get to see his new home.

Sending love and hope.

Leila xx

Bryansie
Posts: 16
Joined: Tue Jun 16, 2015 9:58 am

Re: Brother with inoperable pancreatic cancer

Postby Bryansie » Wed Jul 08, 2015 9:19 am

Dear All,
Thank you for taking the time to read my post let alone replying. Leila, I read your post from start to finish when my brother was first diagnosed, selfishly????? because I wanted an idea as to how long he would be with me, strange???????????? or normal!!. I went through so many emotions reading your truly heart felt accounts, the sadness, anger and frustration you were going through but throughout it all you had that determination to do the best for your Dad, it helped me immensely seeing the support you got from other members and the wondeful support you gave back.
Thank you for being there to everyone.
many hugs and love
Sue

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Brother with inoperable pancreatic cancer

Postby Sueoliver » Wed Jul 08, 2015 10:50 pm

Hi Sue,
I really can feel your pain and I understand. PC is just wicked and seems to pick on the loveliest of people. This forum is here for you.
I hope your brother gets to see his new home and enjoy it.
Look after yourself as well. Take care.
Sue xxx

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

Re: Brother with inoperable pancreatic cancer

Postby Didge » Thu Jul 09, 2015 9:18 am

Sue, my fella was asked about DNR when he was admitted on Sunday and it really upset him although he agreed to it before any of his family could get there. He was very ill and the chaplain was called but even so it was this question which really devastated him and he spent the next two days convinced he was about to die. I really don't think they should do this! I agree with Leila that they should ask relatives instead.

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Brother with inoperable pancreatic cancer

Postby jay » Fri Jul 10, 2015 10:13 am

Sending you a massive hug Sue,Totally agree they shouldn't ask about DNR, they asked Jem and he said Is my life not worth saving ? Breaks my heart every time I think of it.
love jayne
X