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Dad just diagnosed with pancreatic cancer 15/04/13


BB82

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Hi my dad just been diagnosed with stage 3 pancreatic cancer which is inoperable at present. Looking for a second opinion at present and we have a meeting with oncologist today 18/04 to discuss treatments and the way forward! What a terrible disease this is going unnoticed until its advanced. Its going to be very hard the next few months but he's healthy and has lots of fight so we are going head on to beat this! We are keeping positive at this hard time!

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PCUK Nurse Dianne

Hi BBB2,


Welcome to the forum, I am sure you will receive lots of support from your new 'forum family'. I am sorry to hear about your father and his diagnosis, this is no doubt a devastating time for you and emotionally draining with the huge amount of information that will be directed to you. There are some great people who use this forum and I am sure you will find it very supportive and helpful.


Please feel free to utilise the support line. We provide a confidential service to you, Monday to Friday, 10 - 4pm. You can phone us on : 020 35357099 or email at: support@panceraticcancer.org.uk. We can always guide you through the maze and also advise you about getting a second opinion too.


Kind regards,


Dianne

Support Team

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Thanks! Went to see oncologist today. Seems we might have to wait a couple of weeks to get the chemotherapy ball rolling to shrink this tumour! Is this normal?

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Hi BBB2


I'm sorry to hear of your Dad's diagnosis.


I know you must be feeling devastated and frightened for him.


Two weeks sounds normal to me. I know you'd expect them to start right away when you have such a diagnosis but I don't think the disease changes much in 2 weeks.


My partner was diagnosed on 12 Dec and chemo didn't start until early Feb and scans showed no movement at all when he started. This was partly due to Christmas but largely due to the fact he was initially to go onto a trial but was then precluded due to an irregular heart. There was still a gap after he was told he couldn't do the trial to chemo starting.


So don't worry too much about the two weeks.


Hope all goes well for your Dad when it starts. Do you know what kind of chemo he is to have?


All the best


Cathy x

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Sorry to hear about your dad. My husband was diagnosed on 4 March and started chemo last Wednesday. He had jaundice though and we had to wait for that to be dealt with first.


I'm sure you'll find the forum useful, there is lots of good advice from friendly, helpful people who will know what you are experiencing.


Julia

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hello bb2, i know exactly how you are feeling, it will settle down when you have a plan in action, we all want things done yesterday, it just doesnt happen does it, my hubby was diagnosed wth stage 4, feb 2010! click on my name and you will be able to access any posts i have made, [ the same applies to anyone elses posts of course] our story may have bits in that you can relate to, or that may help you and dad, do hope so, stay positive and strong eh! love laura x

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21/4 its just nice to know your not alone and theres others going through the same thing. Two types of chemo gem and flox I think. 3weeks on one week off! I hope he responds well! We all want things done yesterday. Hopefully putting stent in first to stop the jaundice before chemo starts. Nothing but worry and fear

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My husband had a stent put in, two actually and they worked really well but your dad will have to get his bilirubin levels right down before they can start chemo. I think Ray's went down in about 2 weeks(?)


Julia

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That bilirubin? Is levels of his blood? That said it could take afew weeks to get chemo started! Is your husband responding well? Was he stage 3?

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Bilirubin is excreted in bile, like my husband your dad's not able to excrete it as he should probably due to his tumour blocking the bile duct.


He had his stent done on 14 March and started chemo 17 April so a bit longer than I thought for his levels to go right down.


Ray was diagnosed as being locally advanced (Stage 3). He had another scan a couple of weeks ago before chemo and this showed a lymph node in his neck is now also affected so I guess he's now Stage IV. Hopefully the chemo will zap everything! Won't know how he's responding to chemo until he gets his first post chemo scan.


Julia

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Dad has got a date for his stent 2nd May then chemotherapy starts 8th May. He is being put on Gemcap anyone know if it's been used on anyone they know? Side effects etc? Thanks

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hi there bb82, this is the chemo regime my hubby bri had, he had 19 months consecutive treatments, 3 weeks on 1 week off, he coped very very well, read some of my posts, many people on here have had same treatment, i know people vary how they respond, but i beleive generally its one that is well tolerated.

some advice. do start creaming dads hands and feet b4 treatment start and keep it up for the duration, the skin can get very dry and cracked, prevention being better than cure. there are several creams around, we, on reccommendation used, sMOOth cream, and yes its used on cows udders!!!! lovely and soft to use. can be bought from agricultural shops usually

we are off to turkey on friday any posts will answer on my return, good luck, stay positive love laura xxx

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Hi BB2, my name is Steve and i was diagnosed back I December. I have not had a stent fitted as my tumour is slightly lower in the pancreas, so not affecting the bile duct. I have however been on a combination of Gemcap and capecitabine since mid January...... 3 weeks on and 1 week off. My side effects have been minimal other than extreme tiredness for 24 hours after the Gemcap infusion (capecitabine is taken orally) and a rash during the first cycle. I finish chemo on Tuesday and then am lined up for radiotherapy. The most recent CT scan shows no reduction, but no increase in size which is regarded as a positive result. But back to your query.... Gemcap had very few side effects for me though I know we do not all react the same!



Hope this helps


Take care


Steve

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Thanks steve keep me posted on how your treatments are going! The family are looking into chemorad but it hasnt been offered to us. Is that not the best chance to shrink the tumour make it operable?


Take care

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The expectation is certainly that the chemorad will reduce the tumour size and Improve the likelihood of it becoming operable. The surgeons were in my case very sceptical because of the intensive involvement wiith the blood vessels. Whilst they think they can shrink it, they need it to detach itself from the blood vessels to allow them to attempt to remove it. The plan is for 6 weeks chemorad followed by a 2 month break for the organs to recover and then the all important surgical review.


Steve

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  • 2 weeks later...

Dad started chemo on 8/5/13. I guess it will take awhile to get into his system. Gemcap seems to be the standard treatment. I just hope its enough to try to reduce tumour. Has anyone heard of anyone that this treatment has helped shrink the tumour?

Praying constantly its just so hard to think of anything else.

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