Hello! New to site
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- This topic has 13 replies, 7 voices, and was last updated 13 years, 11 months ago by joolz822.
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January 25, 2011 at 3:40 pm #46915joolz822Member
Doylestown is being as aggressive as they should be. I do not feel a lack of attention nor second rate care because it is not a big-name city hospital. The oncologists there also belong to the Penn State network so I’m getting the benefits of their research too.
The only talk about radiation is what I brought up. I do not want it. I had the most dreadful time of it during the series they were giving me when trying to get rid of my anal cancer. It was just about as bad as recovering from my three surgeries.
Actually I like the Steelers, Giants and the NY Yankees. While we’re lived in PA for many years I was raised in NY and still owe my sports allegiance to them. *g*
January 24, 2011 at 3:52 pm #46914chrismarshallSpectatorHi.joolz822,
Please make sure that Doylestown is being as aggressive as possible. I chose Jefferson for their docs, but also access to the best equipment and ideas to fight this disease. Not all ideas are equal, and I continually ask my docs “is this the most aggressive we can be?” I hope doylestown serves you well and wish you success.
I had a met to my lower vertebrae as well and they radiated it. That was 6 months go, and it no longer shows on pet scans. Did they talk of radiating your spine? Ives
Good health to you! Eagles fan? Phillies fan? Wish we were going to the superbowl. Gives me a good reason to sit on the sofa for 4 hours
ChrisJanuary 23, 2011 at 4:08 pm #46913joolz822MemberHey Chris – Suburbs of Philly… me too! I live in Bucks County and am bring treated at Doylestown Hospital. I had a second opinion at Temple and they said there wasn’t anything different about the treatment they’d give me so why go into the city if I don’t have to.
I was just diagnosed in December 2010 and have already gone through chemo/surgery/radiation with my previous cancers… anal and liver in 2009. Now we’re just trying to stop the rapid growth of the tumors with chemo because they are non-operable. I have tumors in my liver, right near my pancreas and one in the last vertebra of my spine.
I try to take things one day at a time because we don’t know the future… just have to keep on keeping on.
Glad you found this site. I’m new to it as well.
January 21, 2011 at 12:11 am #46912lainySpectatorYou are “superwoman”. You are survivor! Your sotry is an inspiration especially to new family. Keep up the good work, you are awesome!
January 21, 2011 at 12:07 am #46911chrismarshallSpectatorHi Gavin, Margaret (Tom), Harmony and Maria!
Thanks to all of you for the warm welcomes!
I didn’t realize when I sent my intial posts that my story might be uplifting to others…but you are absolutely right, I became resectable!! I responded very well to my initial chemo regimen (Oxalyplatin, Gemcitabine and Avastin). At least well enough to become resectable. I was estatic when they told me the surgeon would perform the surgery, as I was only given initially 6 months to live, and never dreamed that day would come. That was 15 months ago. And although I still have cancer (in my liver, and potentially in my lungs and on the abdominal wall), I am hoping that by having alot “less” cancer than I used to, the chemo will work better. Hopefully this round will be able to tackle the smaller tumors more effectively than the ones that used to occupy 1/2 of my liver and bile ducts.
Wow…as I type this…I realize I’ve come a long way.
I’m writing tonight to tell all of you to keep trying as hard as you can!! For me personally, getting cancer was a wake up call to improve the way I lived. While on chemo, I ate a macrobiotic diet, giving up sooo much, and learned to be strong. I attended yoga and read many spiritual and religious books, and exercised (walked) almost every day. the combo fed my soul, and made me feel capable of fighting.
I wish each of you huge success and strength as you battle on. I will be fighting here with you as I continue my journey as well.
Warmly,
ChrisJanuary 20, 2011 at 9:24 am #46910mariaSpectatorHello Chris!
Makes me so happy to read your story! The choice we have is to be a victim or a warrior! Just keep up the fight, and find yourself a comfortable chair because finding this site means hours of reading!
Hoping to follow in your footsteps and soon be resectable too !!
MariaJanuary 20, 2011 at 1:14 am #46909mlepp0416SpectatorHi Chris:
Let me join in with the others, welcoming you to the best little CC site on the internet, that no one really wants to join!!!
My husband Tom was diagnosed in March 2008, underwent a successful resection in June 2008 and the cancer returned in Nov. 2009. This time the new tumor is inoperable because of it’s placement (It involves the Hepatic Artery and surgery would be to risky. And since the new tumor is blocking the bile duct, he has an external drain. 13 months ago, his then oncologist gave him 6 months.
As we prepare to enter the 14th month of life, it just goes to show that no one has an expiration date stamped on their butt! Stay strong and when the doctors tell you ‘they can’t’ ask what they can do! After Tom’s onc told him 6 months, we sought 2nd, 3rd and 4th opinoins. We went to Marshfield Clinic and Mayo Clinic. Although all opinoins agreed with the ‘inoperable’ portion, they did not agree with the ‘no chemo/no radiation’ and he underwent 28 rounds of radiation and then started oral chemo, Xleoda. When his tumor markers started climbing in Oct ’10, they started him on IV chemo. He is still here and we are preparing to celebrate our 10th wedding anniversary in Feb!
This is a wonderful site to learn from. Write down your questions as you think of them else you will forget them when you see your doctors!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
January 19, 2011 at 9:09 pm #46908harmonyMemberHi Chris:
Welcome! While it certainly stinks that scans show that your cancer is back, you actually had some good news in your post, if you can believe that. You went from Stage IV (unresectable) to a resectable position, which is awesome. That should give hope to a lot of people who think that Stage IV is something of a death sentance. I was diagnosed at Stage IV in November 2009 and have been on chemo ever since. I have been working towards that “resectable” goal, and I’m hoping I’m on the road to it, if my latest chemo is doing as well as it seems to be.
I’m on irinotecan (CPT-11) as well as Xeloda, commonly known as XOLIRI. It’s just like your current regime, but instead of 5-FU (which turns out I’m allergic to), I’m getting the pill form of the drug called Xeloda. So far, it’s kickin butt, and I hope it does the same for you!
January 19, 2011 at 6:39 pm #46907gavinModeratorHi Chris,
Welcome to the site. Sorry that you had to find us all but I am glad that you have joined us as you will get a load of support and help from us all. And welcome to to the world of blogging! Thats great that you have joined us all as I know that you will benefit from coming here. We are a very friendly bunch and please feel free to ask any questions and we will all do our best to help if we can.
That is great to hear that the chemo was able to shrink your tumour so that you could have your resection and hopefully also your new chemo regime will work as well, I will keep my fingers crossed for you and hopefully will be reading some good news from you in the months to come.
From what you have said in your 2 posts, it sounds like you have a good and very positive attitude and this is excellent to hear. As you say, the battle continues and I wish you every success with it.
My best wishes to you and your family,
Gavin
January 19, 2011 at 3:56 pm #46906chrismarshallSpectatorI can tell already this website will be a huge help to me. Thanks for the advice!
January 19, 2011 at 3:50 pm #46905lainySpectatorYEA! Love the attitude. 3 children? Well that is reason enough for the attitude.
We usually recommend as many opinions as you need until you are totally comfortable with the opinion and treatment you are getting. When you reach that point then the game plans take over. Honestly the chemo cocktails are a hunt and peck until you find the right one for you, everyone is so different. We just always try to remain realistically optimistic. We have a search bar at the top of the page and if you type in the cocktail you are on I am pretty sure some posts will pop up with that combo and remarks from others who have taken it.
I also know our family here and pretty soon you will hear from someone else welcoming you and perhaps they have been on the same regime. Best wishes to you and your family.January 19, 2011 at 3:44 pm #46904chrismarshallSpectatorI am from the suburbs of Philadelphia and being treated at Thomas Jefferson Hospital in Philadelphia. I had my resection performed at The Hospital of the University of Pennsylvania. My experiences have been good. Although I often wonder how many “second opinions” we should get, and whose combinations of drugs will work the best. I have three children between 9 and 16, and although I realize how difficult this cancer is, I will not allow myself to think that it may beat me. I continue to always hope for those 100% negative scans!
January 19, 2011 at 3:37 pm #46903lainySpectatorDear chrismarshall, welcome to our wonderful family. You may have never blogged before but it sounds like unfortunately you have graduated in CC 101!
You seem to have a great attitude and that is 1/2 the battle. And it is a battle, yes? Do you mind telling us where you are being treated? You have come to the right place and feel free to ask, vent or advise. We are glad you took this plunge and now we hope you visit often.January 19, 2011 at 3:14 pm #4641chrismarshallSpectatorI’m new to this site, and have never even blogged before
I was diagnosed in October 2009 (stage IV metasticized, underwent 11 months of chemo to reduce tumor sizes and make me operabe. Underwent resection in November 2010, but current scans show cancer is remaining in liver. I start chemo again next week with a new regiment of 5FU and ironitecan. The battle continues… -
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