dukenukem
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Will this be your first CT scan after starting chemo?
There are other platins out there besides cisplatin. I did not take well to cisplatin so my onc changed to carboplatin. I hope your onc is open-minded and understanding.
Was there something that caused your surgeon to jump right in with a port?
Just remember that you can’t change the past, only learn from it. Your attitude and that of those walking this path with you are of utmost importance. You have to have faith that God will provide you the grace to sustain you. There are numerous examples of that posted on these Boards.
Duke
Olga
I’m glad that what was in my mind made it to the paper. Sometimes it takes a wrong turn.Here is a link (copy and paste into your browser) to something (Questions to Ask your Doctor) from the American Cancer Society that might help your brother and Angeles. You’ve been down this road but it might help them focus a little and give the meeting some structure.
http://www.cancer.org/acs/groups/cid/documents/webcontent/003285-pdf.pdf
I’d also have them ask what the onc’s experience (and that of the entire staff) is with treating cholangiocarcinoma. And as you’ve read over and over, have them get a second opinion, especially if the onc’s answers seem a little light.
They may hear “everyone is different” “won’t know for sure until we do more tests”. Make sure they keep after the onc to get better answers as treatment progresses.
Try to persuade them to actively participate in these Boards. Use the Search function. Get familiar with all the different Boards. There’s a wealth of information here waiting to be used.
Duke
Remember, there are two studies looking for info, both supported by the CCA Foundation.
1. International Hepatobiliary Neoplasia Biorepository is the one collecting samples and cannot be viewed by participants. The Mayo Clinic sends out a paper form to complete and requests blood and tissue samples. (Chances are that if you had tissue samples taken, there may be additional material stored at the hospital. This was true in my case. I sent a consent form for them to send material to Mayo.) This is the one that that has had one webinar (accessible from the link). To access the forms and webinar go the the Home page and click on the light bulb on the bottom.
2. International Cholangiocarcinoma Patient Registry forms are accessed from the Home page by clicking on the branch with leaves. The forms are completed online. Information can only be viewed by participants. No analyses or summary reports have been issued as yet, only the raw information.
Much of the requested information is the same so it is confusing which one is being referred to. In my mind I separate them as the Mayo Clinic study and the Patient Registry.
Marion – there is no hereditary factor here. Patients are unrelated.
Cazgirl – I lived in Oswego six winters and remember Heid’s in Liverpool. Go there any time we get back Coney’s are great but not enough to offset the winters and stay.
So much for the prelude.
Olga –
We won’t know the answers to your questions in this life. We have to have faith that there are answers There’s a million cliches I could write, but it all comes down to faith. Norbert’s, yours, your brother’s, his wife, family members, and friends. Mine wavers from time to time. I think, I’m not ready yet. There’s too much here to do and too much fun to have. Then I re-center and and focus on making whatever time I have left the best I can. It’s almost easier for patients than care-givers.Peace
DukeI was more interested in further results from the Mayo Clinic data study. The first was a good start but there is so much more to be reported.
Duke
What a tease! They give you a little info but then you need to pay $45 to get the whole study. This seems fairly common. Is there another way to get the full study for this (and other) abstracts?
Wow! I went back and searched all your topics. What a journey in such a short time.
One question: were your tumors restricted to the liver or had they metastasized?
Duke
The word “future” is my current favorite. Just before I read this I posted something on that in “Member’s Cafe”.
Bottom line – it’s time to live!
Duke
After some initial bumps in the road with SS, I did a phone interview and flooded the person with info. I didn’t hear anything for a month and called back to find out that I had been fast-tracked and approved for disability in two weeks. The best part of the phone interview was that I was put into a call back queue and did not have to wait, listening to messages and music for over an hour.
After all the horror stories I had heard about SS I was blown away by the cooperation I got. Of course, they were supposed to convert me from retirement to disability July 1 but that did not happen. Time for another call.
Duke
I’ve had a little of all of the above. I have a tumor in my liver and several in both lungs and some in lymph nodes. Before I was diagnosed, I had pain on my right side at the bottom edge of my rib cage. At the worst it kept me from sleeping. The only tolerable position was sitting up. After chemo began and the liver tumor shrunk from 18 cm to 10 cm, the pain went away. If I remember I also had some pain in my right shoulder but dismissed that as “sleeping wrong.”
Duke
It started out for me as a way to put things together, then expanded. Sat on it for a while to let some of the seeds germinate. Expanded again, then decided to post. I could spend more time (one thing I have lots of) but I wanted to hear what you have to say. If I misstated something, that’s easy to fix and needs to be fixed. If you have a different opinion, go for it. That’s what makes this site so strong. I just checked – 3157 registered users; 24 in July alone. That means people are not just passively monitoring, they see value in participating. That’s what I hope this post will do – convince people to participate by giving them an idea in one place what we are all about. Then we can go about what we do best – listen and help our new family members.
Thanks for your support.
Duke
Follow up to my December 5, 2013 post, first paragraph.
Pebble Beach, CA – Judy Nemes made her peaceful transition on May 30, 2014. Judy’s passion for photography and writing was a gift as she wrote and shared her life story starting in Hungary, through her travels and 17 years of cancer. She loved theatre, and continually educated herself with research and reading. Her friends were all of the many books she had on her shelves and then e-books. She will be remembered for her strength, courage and her inspiration to others.
Throughout her ordeal with this disease, Judy had always stayed extremely positive through her last days. She understood that her body was the carrier of the disease – not her mind and spirit. It was this drive that kept her alive and optimistic all of these years.
Judy is survived by her loving husband of 50 years, Tomi; her sons, Brian and Kenny; Kenny’s wife, Michelle; grandchildren, Briana, Justin, Olivia and Emma; brothers, Peter Szabadi and Tommy Szabadi; and best friend, Sheri Parelskin.
We give gratitude for her many friends, Dr. Hausdorff, Pacific Cancer Care – Vivian, Mary and the rest of the nursing staff, and Hospice of the Central Coast for their loving support. – See more at: http://www.legacy.com/obituaries/montereyherald/obituary.aspx?pid=171211465#sthash.U9ARufvb.dpufLiving with Colon Cancer
by Judy Nemes
Inspiration image
Sigmoidoscopy, the detector,
I, the observer
And protector
Of this body
We live in.With a positive attitude,
Always planning ahead,
Cancer will not run my life!Fifteen years of
Surgeries, treatments,
Removal of organs.
My armor intact,
I forge ahead.Tumor takes sabbatical,
Goes into hibernation.
I travel the world …
London, Paris, Rome.
Cancer will not slow me down!I am the observer,
Watching
This amazing story
Of a woman, me,
Never giving up.
Cancer will not run my life!Who am I?
I am Judy,
Lover of life.
Cancer will not define me!♦ ♦ ♦ ♦ ♦
Judy Nemes is a colon cancer survivor living in Pebble Beach, CA.
This article was published in Coping® with Cancer magazine, September/October 2013.
Lainy – Do I hear Judy and Teddy discussing the merits of spaetzle and gnocchi?
Duke
Maybe my expectations were unrealistic. The main tumor had decreased from 19 to 10 cm in about 10 months and I naturally hoped for a continuation. Onc will probably order another CT in 2-3 months. Until then will monitor for changes in alk-phos and CA19-9.
When I read posts from others, I am continually reminded how good I have it. I am tolerating chemo extremely well. Which is maybe why I’m thinking I could go a little more aggressive if the results support it. Before I retired I drew the generic survival curve (we’ve all come to know and hate) for one of my friends. I told him that as long as the curve doesn’t drop to zero, someone has to be out there and I intend to be one of them. His reply is not suitable for a family site like this, but it was his way of being supportive (LOL). Something along the lines that, if chutzpah is sufficient to accomplish that goal, I have enough to succeed and leftovers to share.
I feel better. Thanks.
Duke
I’m sorry I missed the webinar. There had to be so much more information presented – typical of PowerPoint presentations.
Did they give any time frames for when this information may get factored into treatment plans?
Any information about being able to detect at an earlier stage?
Slide 32 – “Survival of pCCA Patients …”. When will they have a similar slide for iCCA patients?
Duke
