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LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby LMD » Wed Sep 10, 2014 11:01 pm

Hello Susanna - hope your husband feels better and the pain is under control. Thinking of you x

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

Re: My 41 years old husband has inoperable pancreatic cancer

Postby jay » Thu Sep 11, 2014 11:12 am

hI sUSANNA, HOPE THE PAIN IS UNDER CONTROL, A FEW WEEKS AGO MY HUSBAND WAS IN ALOT OF PAIN AS THEY SAID HIS BODY WASNT ABSORBING ORAL MEDS, HE WAS SWITCHED TO IV MORPHINE, WHICH WORKED, HES NOW BACK ON ORAL MKEDS,
X

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby SusannaUK » Thu Sep 11, 2014 12:19 pm

Dear All,

Thank you for all of you for your comments and for thinking of us!

Yesterday my husband blood platelets were 160, so it was ok to carry on with the chemo. He had a reduced dose of Folfirinox and the oncologist decided to have it in every three weeks instead of two weeks (reduced dose). It looks like that it was too much for him. So yesterday he had the 9th cycle. 3 more and 12 cycle completed. After that they would like him to participate in a clinical trial. It called PARP Inhibitor Trial (related to BRCA). I have no clue what it is. It is something about genetic things. I've searched on the internet yesterday but found so many things, I don't know what it will be exactly... My husband is happy to do the trial, he trusts the doctors, so they will start it after he completed the 12 cycles.

I also asked him to ask the oncologist about his CA19-9 level, as I read so many of you mentioning this and we had had no information about it until yesterday, when he asked. I was shocked when I saw the numbers were so high! Here it is:

May 2014 was 187,749
June 2014 was 74,771
Aug 2014 was 28,105
Sept 2014 was 26,340

My husband is ok today, they didn't do much about his pain, because by the afternoon it was eased, they said that it happens sometimes... It was just unusual because he hasn't had this terrible pain since May!
Anyway, overall, we are fine and his happy that he will just have it every 3 weeks. I am of course a bit worried (as usual). Isn't it a back fall?

Now he is back from his massage, the boys are in the nursery until 6 pm, so we have a little time together today.

Thank you again all of you!
Susanna x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: My 41 years old husband has inoperable pancreatic cancer

Postby nikkis » Thu Sep 11, 2014 2:01 pm

Hi Susanna,
The trial sounds interesting, that is good news that he has another option. It is understandable you are worried,this thing takes away all our certainty in life. Hope that pain stays away.

Nikki

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: My 41 years old husband has inoperable pancreatic cancer

Postby Didge » Thu Sep 11, 2014 7:47 pm

It is thought that the BRCA gene, which accounts for some breast cancers, can also be linked to some pancreatic cancers. My bf is waiting to be tested to see if he has the faulty gene. I have heard of at least on PC sufferer who responded well to Herceptin after finding out she had the faulty gene so it is worth a go on the trial if he can. CA19-9 levels are a very individual thing so cannot be compared to other people's. Some PC tumours do not give raised levels at all. the important thing is that they have come down a lot!

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: My 41 years old husband has inoperable pancreatic cancer

Postby nikkis » Thu Sep 11, 2014 8:32 pm

That's is really interesting Didge, I knew there was a link between PC and breast cancer, but I didn't know they could test men with PC for the faulty gene. Paul's mum and 3 of her sisters have all had breast cancer, and his consultant has only ever talked of testing our girls, something I do not feel comfortable about. Will definitely ask him about this.
Nikki

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby SusannaUK » Sat Sep 13, 2014 4:00 pm

Thank you Nikki and Didge!

Didge, thank you for the explanation. Now I understand a bit better what it will be. It sounds interesting indeed. Also I didn't know that CA19-9 level are very individual. So many things I learn here on this forum. It is true, his level has come down a lot, which is good and that is what I have to see in it.

Nikki, my husband is not a big pain now. I don't know why he had it for 2 days. I assume it just happens. But he is very very tired, just sleeping all day. I am so sad! The boys are always asking me where Papa is. They are sad too that he is not with us. It's so hard.
If there were so many people in Paul's close family with breast cancer than definitely ask about this from the oncologist. He might be another ideal person for this trial.

Take care all,
Susanna x

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby SusannaUK » Mon Sep 15, 2014 12:24 am

Dear All,

Ahhh, we are having a difficult time again. Since yesterday evening my husband has had a lot of pain and taken a lot of oral Oxycodone, we started to run out of it. Of course (as usual) we come to this point during weekend when there is no GP Surgery open. When he woke up this morning, he could not stand up, was in so much pain. I quickly called the Palliative Care Team in the local Hospice and luckily his Community Nurse was in duty this weekend, so she could come and visit us immediately. She arranged a doctor to prescribe some Oxycodone. She took me with her car to the nearest hospital to collect the prescription and also took me to a pharmacy which is open on Sunday and luckily they had Oxycodone in stock. It was such a big help for us, I couldn't say thank you enough to her. Now my husband takes it often and we have to see what happens. We don't understand why this pain is there again, he hasn't had for almost 3 months. I am so sad, my husband is just sleeping all day, actually slept through the whole weekend. I was struggling with the boys, they sense that something is wrong and just more active than ever and just don't listen to me. Jumping all around, had some accidents, of course because of jumping and going crazy. I tried to cook and tidy and clean, but struggled. Just to see my husband like this is so heartbreaking. He cries a lot because he see how I am struggling, although I try to hide it from him, but he cries and say sorry to me because he cannot help me with the boys and he cannot spend time with us. I always tell him, don't be silly, don't say sorry. If you need to sleep, if you need rest, you have to sleep and rest. He is the priority now. It is just so hard. I really hope that this pain will be sorted because it is just so heartbreaking. He doesn't eat, he eats very little and just loosing weight. He lost 2-3 kg in the last couple of days. I am so so sad! What shall I do? What can I do for him?
I know that all of you are going through the same or similar, it was just good to write it out, I cannot sleep, I am just thinking and thinking and thinking.
Take care all of you,
Susanna x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: My 41 years old husband has inoperable pancreatic cancer

Postby nikkis » Mon Sep 15, 2014 8:14 am

Dear Susanna,
You are having such a tough time. One of the things Paul and I say we are really grateful for is that our girls are nearly grown up and able to look after themselves, it must be so hard coping with young children. I just wish I lived near you so I could send my girls round to babysit and give you a break!

Paul's pain is always there, but gets worse at times but so far, it has not meant anything has changed. The chemo itself seems to give him pain, I tell myself it is because it is giving the cancer a kicking! Since January the only thing that has really worked is Diamorphine, either through a pump or I give him injections through a small port. I am sure the palliative care team will find what works for you husband. New drugs might make him more sleepy at first but once he gets used to it he should feel better. Your Community Nurse sounds wonderful, I wish everyone here had someone like that who was willing to go the extra mile.

I really hope things get better for you soon,

Nikki

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: My 41 years old husband has inoperable pancreatic cancer

Postby nikkis » Mon Sep 15, 2014 8:49 am

Just had a thought Susanna. Has anyone suggested Homestart? They have volunteers (often Mum's themselves) who give practical and emotional support to families with young children. In our area this means you have the same person, usually for half a day a week, who is someone you feel comfortable with, who will look after the children while you get on with things or just be there to support you. You can self refer and their website has lots of info, and will tell you what is available locally,
Nikki

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: My 41 years old husband has inoperable pancreatic cancer

Postby Didge » Mon Sep 15, 2014 9:45 am

Susanna, I will message you privately but I am so sorry you are having such a hard time. I think Nikki's idea of Homestart is a great one. There is a lot of help out there but it is not always easy to remember or to have the energy to look for it! x

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: My 41 years old husband has inoperable pancreatic cancer

Postby RLF » Mon Sep 15, 2014 9:58 am

Hi Susanna, I've been reading your posts for a while but I felt I needed to say well done for doing so much and coping with it
as well as you are. You may not think you are coping well but my god I find it hard just looking after 2 of us and the dog, I really don't know how you can do it with young kids too. So much respect for you! I don't know much about what you can do for him at this point, but keep your medication stocked up, if you're getting half way through a bottle get another so it's there if you run out and everywhere is closed.

That home start idea is a great one, so that's something to look into. Hope he feels more comfortable soon. Rob x

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby Bowie » Mon Sep 15, 2014 8:47 pm

Susanne, I'm really sorry you are going through all of this and like others can't begin to understand how you cope. You really must be so strong to cope practically, emotionally and just to get though each day and it must be so hard with your young boys. I hope you get some help sorted out soon. Fiona X

sandraW
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: My 41 years old husband has inoperable pancreatic cancer

Postby sandraW » Mon Sep 15, 2014 9:53 pm

Susanne, I too feel sorry that you are having to cope with all this without any family help, as they are so far away from you, they too must be worried about you and your poor husband.
Its awful for you to see him in pain, and I feel so sad for him too not feeling well enough to spend time with your two boys. I hope you can access some help soon, you are doing a marvelous job, please take care sandrax

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

Re: My 41 years old husband has inoperable pancreatic cancer

Postby jay » Mon Sep 15, 2014 10:35 pm

Susanne sending you a massive hug,hope your husbands pain gets sorted soon,
x