A forum for advanced pancreatic cancer issues

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

Re: Newly diagnosed 45 yr old mum of 4

Postby Didge » Sun Jul 05, 2015 9:42 am

Marie, just to let you know I am thinking of you. Living in the moment is the key but it certainly is hard sometimes. The waiting is awful so I hope you manage to take your mind off things next week as best you can and hopefully get answers very soon after. I am glad the suns is shining - it's not here! x

Marieb
Posts: 65
Joined: Sat Jun 20, 2015 6:35 pm

Re: Newly diagnosed 45 yr old mum of 4

Postby Marieb » Sun Jul 05, 2015 1:15 pm

Thanks Didge. I love the fact that even though you are all dealing with your own personal nightmares that you take the time to offer support to others. My husband and children are keeping me sane, it's hard to believe sometimes that we are dealing with something so massive as there is a lot of love and laughter which helps to distract from it all. Take care all of you and keep strong. X

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Newly diagnosed 45 yr old mum of 4

Postby kittycat » Sun Jul 05, 2015 2:27 pm

Marie, when my husband was diagnosed in March all I could think of was the wonderful life that we had lost. We did everything together like dancing, walking etc but now i'my just grateful for every day we have together. It' so about the only thing that keeps me sane and I just pray that he will respond to treatment, but I think living for the moment is so important. Enjoy your day.

Sue

rsk1974
Posts: 80
Joined: Thu Jul 31, 2014 1:21 pm

Re: Newly diagnosed 45 yr old mum of 4

Postby rsk1974 » Sun Jul 05, 2015 6:33 pm

You are amazing, and your children will give you the strength and fight to kick this cancers butt with everything you have. Enjoy every moment, nobody knows when there last is. You are an.inspiration and use this forum to vent if you need to everyone has some idea of the fight.x

Marieb
Posts: 65
Joined: Sat Jun 20, 2015 6:35 pm

Re: Newly diagnosed 45 yr old mum of 4

Postby Marieb » Tue Jul 07, 2015 12:24 am

Quick update - I had asked to be put on the cancellation list for my EUS and got a call this morning to say I now have an appointment for this Wednesday. Fantastic news but also scary as obviously it means that knowing exactly what I am dealing with is now very near, no hiding from the truth at that point. Its a 2 hour drive to get there so my lovely sisters have booked an apartment and we are going up tomorrow for a day in the city, followed by a girly night in. So lovely of them to turn something scary into an opportunity for some fun. Fingers crossed it all goes smoothly, I will let you all know how it went. Sleep well everyone, for tomorrow is another day x

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

Re: Newly diagnosed 45 yr old mum of 4

Postby Sueoliver » Tue Jul 07, 2015 10:39 pm

Good luck tomorrow I hope it goes well. The girly night sounds great what lovely sisters you have. Stay strong and stay positive.
Sue x

Marieb
Posts: 65
Joined: Sat Jun 20, 2015 6:35 pm

Re: Newly diagnosed 45 yr old mum of 4

Postby Marieb » Thu Jul 09, 2015 5:28 am

Hi all , update on my Endoscopy yesterday. After all the build up am afraid it was not successful. There were not able to take any biopsies so I am afraid it's Back to waiting for another referral for a slightly different procedure. This news caused a fair amount of upset at the time. The reason for the failure to biopsy is that I apparently have a large amount of blood vessels lying between the stomach and pancreas, new ones have grown due to the area being affected by the tumour. This meant that navigating to the pancreas via this is very high risk and the doctor felt that it could result in the vessels being damaged, endangering me in the process. Added to that me becoming distressed towards the end of the procedure, it all became to high risk and the procedure was abandoned. the doctor and the team at the Specialist Centre are already discussing my case and how best they can get this biopsy without causing me harm and hope to be able to update me in next day or two. Hopefully I can get it done ASAP, they have promised that it will be scheduled urgently. So again I wait but I do believe they are acting in my best interest.

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

Re: Newly diagnosed 45 yr old mum of 4

Postby Didge » Thu Jul 09, 2015 9:29 am

Marie, sorry you did not get answers yesterday. I am confused as to why they need this biopsy. Are they unsure as to whether it is actually in the pancreas? If not, why can't they just start chemo? It is not always possible to get biopsies so often treatment just goes ahead regardless. What is the new procedure going to be or have they not told you yet? X

Marieb
Posts: 65
Joined: Sat Jun 20, 2015 6:35 pm

Re: Newly diagnosed 45 yr old mum of 4

Postby Marieb » Thu Jul 09, 2015 10:23 am

Hi Didge, they said at the beginning that it was to confirm the diagnosis (although they are 99% sure it's cancer) and to find out which cancer it is, they said there are 3 different types and only the tissue sample will tell them which one. They said that the treatment options (in terms of which combination of drugs) and prognosis would be dependant on what this tells them.
The local Specialist a Nurse phoned this morning to say that there has been a lot of activity over the last 12 hours with emails flying back and forth. The Specialist Centre (which I was at yesterday) are having a MDT meeting today and this will then be fed into the local MDT meeting tomorrow morning. Hopefully this means they will make a decision on how they get the sample and reorganise quickly. She also said that they have requested that I be sent for an MRI on my liver.
I am trying to stay calm and not read too much into it but it sounds like I am a bit of a mess. I am hopeful to hear their plans on Friday afternoon so for today I plan to switch off from it all. The sun is shining (I live in Scotland so I feel the need to celebrate every time the sun visits :) ) and despite yesterday I feel good and have some energy so I am off out for picnic with the kids and to take my dog for a swim in the river.
If you do have any views on any of this, please do feel free to express them....knowledge is power..I will be checking in again later. Marie x

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

Re: Newly diagnosed 45 yr old mum of 4

Postby Didge » Thu Jul 09, 2015 1:45 pm

OK well the questions I would ask are which different drugs would be used for possible types. I wonder if they are considering if it might a neuroendocrine tumour instead of adenocarcinoma and I am not sure if that has different chemo. Most people have adenocarcinoma and the drugs are: gemcitabine plus abraxane as a first line treatment, or gemcitabine alone or with capecitabine or the rolls Royce of treatment drugs, folfirinox which is a combination of 3 drugs and sometimes has one or other of them dropped from the mix. It may be worth speaking to the nurses on this site who can advise further! Enjoy your sunny day! X

Marieb
Posts: 65
Joined: Sat Jun 20, 2015 6:35 pm

Re: Newly diagnosed 45 yr old mum of 4

Postby Marieb » Thu Jul 09, 2015 9:27 pm

Thanks Didge, I will ask that when I speak to them tomorrow.
Marie x

Marieb
Posts: 65
Joined: Sat Jun 20, 2015 6:35 pm

Re: Newly diagnosed 45 yr old mum of 4

Postby Marieb » Sat Jul 11, 2015 7:56 pm

Well I was out and missed the call but I am booked in for another EUS on Monday. This is the same procedure as before so I can only assume they have now reassessed with the senior Team and believe they can see a way to get the biopsy. It's a very quick turn around for the appointment so I am really pleased about that. Fingers crossed it works this time.

Marieb
Posts: 65
Joined: Sat Jun 20, 2015 6:35 pm

Re: Newly diagnosed 45 yr old mum of 4

Postby Marieb » Tue Jul 14, 2015 6:38 am

Hi all, great news, they managed to get a biopsy yesterday. So relived!
I will be talking with my Specialst nurse this morning to discuss the next steps and then I am going to try and forget about it all whilst on holiday.
Marie

rsk1974
Posts: 80
Joined: Thu Jul 31, 2014 1:21 pm

Re: Newly diagnosed 45 yr old mum of 4

Postby rsk1974 » Tue Jul 14, 2015 7:03 am

Really pleased they managed the biopsy, enjoy your holiday, you so deserve it after the last few weeks.x

linjo1977
Posts: 8
Joined: Sun May 31, 2015 9:33 pm

Re: Newly diagnosed 45 yr old mum of 4

Postby linjo1977 » Tue Jul 14, 2015 3:36 pm

Hi Marie, when I was diagnosed in March I was told it was inoperable, just based on a scan and blood tests, and that has turned out to be the case. The final blow was being told that it wasn't suitable for chemo either. They've given me 9 to 15 months and we mean to make the most of it. I've got past all that and try to fill my days and not have too much time to dwell on the pc. It doesn't always work and those are the times I turn to the forum for much needed support and courage. I do hope Marie that you have good news and that chemo will be offered and successful. Keep that fighting spirit to the fore and keep on fighting.
love Lin