topic Re: New and pancreatic cancer. in I've just been diagnosed

New and pancreatic cancer.

Tanwhyte — Thu, 10 Oct 2013 07:27:03 GMT

Hi, my name is Tanya, and I have just turned 40. A few weeks before that my ancle swelled and wouldn't go down, then my calf muscle swelled and then my neck swelled. Then I decided to go to a doctor. I decided to go to see a different doctor at a different surgery as my normal doctor would have said that it was just my osteoarthritis playing up, given me anti inflammatory tablets and sent me on my way. Best decision but the worst! The doctor sent me straight up for ultrasounds of my leg and neck thinking it was blood clots. That's when they discovered lumps in my glands on my neck. So 3 days later I was called back and sent for biopsy and ct scans. That's when they told me it was in my liver and a small spot on my pancreas. So off to the surgeon here to check bowel and stomach as they could not find the primary. Then, i had mammogram, and check for cervical, all clear on those. From there I was sent to Sydney for them to do a ultrasound biopsy of my pancreas. Was the most horrible experience of my life! After I woke, the surgeon came out and told me that I had a rare and aggressive type of pancreatic cancer and there was a tumor. There was no surgical option, I would get no treatment, and if I did it would just be to keep my family happy! Good luck and you have a 50%chance of maybe living a year. Well I left the hospital with no hope at all. I Nearly didn't go to my oncologist appointment the following week. But I decided to go and see what she had to say..... Thank goodness that I did. She had been doing research and has me on a trial of drugs. I have a heavy dose of chemo, each session is 52hours (46 hours on an infuser) every 2 weeks.I have had 3 lots of chemo treatment so far with 9 to go. Next treatment next tuesday. So far I have not been sick.. (touch wood) . We are participating in relay for life this weekend. It's an experience that I am having mixed emotions about. With my cancer i have not been told too much, and there is not a lot of information out there apart from doom and gloom on the Internet. Statistics are not pretty but I don't want to be a statistic! If there is anyone out there going through this and wants to chat, I would appreciate any and all information you wish to share with me.

Re: New and pancreatic cancer.

kj — Sat, 12 Oct 2013 03:03:42 GMT

Tanwhyte Sorry to read of your plight,do not take to much notice of stats, we are all different, the numbers only mean something if you let them,I have had a whipple for Pancreatic Cancer and was given 18 months to live, 3 years later i am still here so while there is life there is hope,sounds like you are on an aggressive chemo therapy, good luck with your next treatment. kj

Re: New and pancreatic cancer.

Tanwhyte — Sun, 13 Oct 2013 02:52:47 GMT

Thank you KJ, Staying positive and enjoying my family. Yes it's a very aggressive chemo, would be nice if it makes even a scrap of difference. I am on a trial, I will try anything so I get more time with my wonderful husband and 2 beautiful girls. I would love to see my oldest graduate from uni at the end of next year. And see my youngest turn 18. Here is to kicking this horrible disease to the curb! Congrats on your 3 years! Doctors! They know a lot, but they just don't seem to know how determination and the human emotions work. Where there is life there is hope! I love that!

Re: New and pancreatic cancer.

melbourneboybor — Mon, 04 Nov 2013 01:43:50 GMT

Hi Tan, Wow - sounds like you've gone through so much! Can I say something though, sounds strange, but the way you type I can tell that you're keeping a good strong mind set about all of this! Sure, we have our ups and downs, but it sounds like you're really up for a challenge and aren't going to go anywhere without a fight! Tanwhyte - for what its worth, my name is John and I'm from Melbourne. I've read your story here on Cancerconnections and I genuinely wish you all the best. Good luck with the treatments and I hope that you'll use this website to share how you are feeling - the highs and of course, the lows

Re: New and pancreatic cancer.

timvick — Mon, 04 Nov 2013 13:51:52 GMT

Hi Tanya, KJ and MBBE My name is Tim, I'm 54, single (unfortunately) with no children. I live in Perth. Sorry I don't know much about blogs so I apologize if I mess up. In May 2012 I was diagnosed with pancreatic cancer after turning orange with yellow eyes (I looked like a giant M&M!). They gave me very little chance but I undertook a Whipple Procedure (assume you know what that involves) and a week after 9.5 hours of surgery they said I had no chance of living more than 3 months and were going to put me in palliative care. Chemo was not a option ("a waste of time"). Public hospital doctors!! I saw a different oncologist who let me have chemo. In January 2013 I went back to work part time, then full time in March. My last test result last week showed no cancer and my Professor reckons I'm a miracle as I'm in the 1% group that survive. He made the analogy to being the only survivor of a full Boeing 747 crash. I get tired some days but walk a lot and I'm putting weight back on (lost 56kgs and got down to 61kgs) and eat quite well. I don't have any special diet. So there is ALWAYS hope, don't give up! Wishing all of you every success and I'd love to hear from you.

Re: New and pancreatic cancer.

melbourneboybor — Tue, 05 Nov 2013 01:17:20 GMT

Hi Tim, Thanks for your reply - Congratulations! Wow - that sure is a miracle. Without sounding insensitive, perhaps you could post an introduction or more indepth story about your journey. I only ask as while indicating you might be the 1%... everyone here hopes that, that too will be them. Sharing some, if any of your story might help some others and I know we'd appreciate hearing from you Best John

Re: New and pancreatic cancer.

Tanwhyte — Tue, 05 Nov 2013 06:51:52 GMT

Hi Keith, John and Tim. Well I have just started treatment no. 5! At clinic for 8 long hours today and infuser for another long grueling 46 hours! Needed to be checked by drs before I could start treatment this morning as I missed chemo last week as my immune system was pretty much nothing. But the good news was my bloods were completely back to normal levels again today! Yay. I did have some awesome news last week though, I got the results from my 4th round of chemo ct results back. The results showed that the lesions on my liver have started shrinking and some completely gone, my spots on the outside of my pancreas completely gone! The ones in my neck completely gone! The others on my lymph nodes have shrunk by half! Just wish they could have seen inside my pancreas to see if the tumor had done anything yet! But guess that will be further down he track to see the surgeon in Sydney again! Felt a little sorry for my oncologist as she ws away last week and didn't get to give me the good news herself. She came in very happy to see me this morning, smiling from ear to ear. And yes John, I am probably the most stubborn, and determined person that you have ever had the pleasure not to meet! Hahaha. Someone tells me I'm going to die, I sit back and think, naaaaa I'm going to fight this with all my might! They tell me I prob won't get chemo again this week cause my immune system will still be too low... Naaaa, I'm coming anyways just in case! (won that one) and thank you for your well wishes! Really appreciate them. And Tim, I too would love to hear more about your journey. What chemo did they give you and how you handled it all. Oh and a huge congratulations! I too am very determined to be part of your 1% club! And Keith, you have raised my determination just that bit further with the info that you have given me. As far as I can see if people in America are having success on these drugs why can't we here in Australia make a difference to the success rate as well! Hope you are doing well. I hope you are all having an awesome day, enjoying life family and friends. Tanya.

Re: New and pancreatic cancer.

timvick — Sat, 09 Nov 2013 12:44:55 GMT

Hi Gang! So here is my story in brief. Well I started feeling unwell on March 19 2013 and was going to the toilet a lot and gradually went orange with yellow eyes. My useless former GP said I had Hepatitis A but I said that was not logical as I had not gone any where or done anything that would have caused it. A friend suggested I go to a gastro Professor and he knew immediately what was wrong and sent me for tests and MRI scan. They then got me into Fremantle Hospital (going through emergency is terrible!) and they blew my stomach up and stuck a camera in via my belly button. They saw that the cancer had grown under my bile duct which was causing the jaundice. A week later I had a Whipple procedure and was discharged a week later. I had a lot of ascites fluid which caused me to blow up and made me feel like I had a coat hanger wire around my stomach and was tightening all the time. I was in and out of hospital for months and then started chemo which was Gemcitabine which made me very unwell and I got down to 60 odd kgs from 120 kgs (yes I WAS fat). When I finished in January I felt well enough to start work part time then went full time in March. I still had the fluid and got a tear in my stomach which gave me a hernia and I've been on fluid tablets to clear that which it is but slowly. I certainly did not look very good with a big bump out the side of my stomach. So it has been (for me as a very inpatient person) a long process getting back to health but it sounds like I got off extremely lightly. I'm up to 76kgs now so just about where I should be. I have to take Creon for my pancreas with every meal and fluid tablets and occasionally anti nausea tablets. I'm off to Sydney & Melbourne this coming week so I won't be online very much but will try and check the forums. Best of luck to all of you - we CAN do it! Cheers Tim

Re: New and pancreatic cancer.

Tanwhyte — Tue, 03 Dec 2013 22:14:54 GMT

Hey guys, got more awesome news yesterday, my CA-19 levels have dropped down to 87! So after 6 treatments I have gone from 240 to 87! I am kinda chuffed about this. Started treatment 7 yesterday, pump off tomorrow afternoon! They have reduced 1 of my drugs, only by small amount and the numbness and tingling in my fingers, toes and tongue have been better, I have 1 more dose of this particular drug from my concoction and then they are going to give me a break from it for a while, then reintroduce it in a few weeks, that means 2 hours less in my office chair! Lol After next treatment they are going to me measuring the size of he tumor in my pancreas, hopefully it has shrunk or not grown. That would be awesome christmas news! General health is really good, everything they told me will happen my body is doing the opposite! Lose weight, nope gaining! Hair fall out, nope, growing thicker and longer! Always been like that... They say,,, I do opposite! My family always said I was the stubborn one! After Christmas they are going to be doing some "further investigations" on my lymph nodes. The ones in my neck came back as inconclusive when they did biopsies in July, and now that they have totally gone they tell me that they were disappearing before I started chemo, and the ones around my osophigus and gullet are shrinking so fast, they are wondering if they are not something else not cancer there, but the drugs do seem to be helping! Hope everyone is doing well and fighting the fight with all your strength and determination! Keep positive! You never know when lady luck just may be smiling down on you and will give you hope! Tanya.

Re: New and pancreatic cancer.

timvick — Tue, 31 Dec 2013 03:08:58 GMT

Hi Gang Sorry for my long silence, had a lot on with work, Xmas, etc and trying to catch up on my e-mails! Tanya that is simply awesome news, I love your positivity - keep it going girl! Wishing everyone a truly fantastic 2014! Regards Tim

Re: New and pancreatic cancer.

Tanwhyte — Wed, 15 Jan 2014 00:05:10 GMT

Hi everyone! Hope you all had an amazing Christmas and here is to a wonderful new year! Been a while since I have been on, hope everyone is feeling fantastic and kicking ass! I am up to treatment number 10 and feeling like I could take on the world! Had ct scans done last week and got results yesterday, everything is shrinking or disappearing! They had to give me double contrast dye for 2 different scans and they actually could see inside of my pancreas at the tumor, not enough to measure it but by what they could see it has defiantly shrunk. All the lesions on my neck are completely gone! The ones in my glands around gullet and osophigus have nearly all gone, liver ones have shrunk by half again or gone! So here is to this year doing better than 2013! Every side effect they told me I would get I have not got, the only thing is still battling the good old blood clots in my legs! Prob move faster if I remembered to take my injections twice a day! Lol. I am shocking with medications! My oncologist keeps yelling at me! I hope that all of you have good results and show those doctors how much determination you have to beat anything they try to hit you with! Hope, love and sheer determination! We will show the world! Tanya

Re: New and pancreatic cancer.

iangray9 — Fri, 31 Jan 2014 00:34:40 GMT

Hi Tim I'm a newbie and don't know how to write to you in a public way without replying to something you posted. Congrats on your successful procedure. That is something I am aiming for. I am a 64 year old male who over the 12 months since diagnosis has responded well to chemo for pancreatic cancer (metastatic adenocarcinoma mainly of the tail of the pancreas), but so far surgeons won’t operate because there has been evidence of metastases into omentum and peritoneum. I’ve been off chemo since November 15 2013 and so far my ca19.9 has stayed stable. One surgeon has said if it stays stable for 6 months he would operate with whipple and removal of omentum. I am hoping for this but realistically it may not stay stable in next month or so and I will be back on chemo. At what stage of proceedings did you have your whipple? In what State of Australia did you have it? How has quality of life been since? Thanks !! Ian

Re: New and pancreatic cancer.

timvick — Thu, 21 Aug 2014 02:15:04 GMT

Well I feel ashamed for not posting for 8 months (yikes!) but still going well with a few bumps along the way. More importantly how is everyone? Still doing well I trust!

Re: New and pancreatic cancer.

timvick — Thu, 21 Aug 2014 02:20:49 GMT

Opps sorry Ian I did not respond to your questions - very rude of me! I had my Whipple fairly quickly (2 weeks) after them working out that I didn't have Hepatitis A. I live in Perth and had it at Fremantle Hospital. Considering the size of the operation my life hasn't been too bad considering the alternative was death.... I had the op on June 22 2012, was discharged after a week (a world record according to my nurses) and went back to work in January part time during chemo, March full time and have been there pretty much since March 2013 with a few off days every few months. Tell me your story please?

Re: New and pancreatic cancer.

DG — Thu, 21 Aug 2014 13:14:03 GMT

Im so pleased for u things seem to be going so well i hope they continue to do so 🙂 xx