Scan showed improvement
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Thank you all for sharing your stories and providing places for me to continue looking. It is so helpful as you all know to have somebody in the same situation you are in. Bless you all!
Hi Cathy!
I was diagnosed ICC (no nodes, no distant mets, but mets to the liver itself) in October 2012. Did three rounds of Gem/Cis and got great shrinkage on a large tumor (6 cm), two smaller ones (2 cm) and little ones throughout the liver (< 1 cm). I had certainly NOT been a candidate for any type of surgery. But the shrinkage was so impressive and my overall health so hardy, the surgeon decided to "throw in" surgery. Mind you not a curative surgery in anyone's book but a surgery designed to take out at least 80% of the tumor burden and leave only all those little ones (left lobe gone, taken out). Hopefully buying a lot of time. Next, only a few days out of icu for the surgery, they started the process for the therasperes of yttrium-90. The plan was to go back to chemo right away but I have had trouble with counts. I went back to chemo today, about 6 weeks after the y-90 infusion. So you can see that if you get good shrinkage and really respond to chemo, you have more options. If not, you always have radiation and some members fight this thing with surgery and radiation only, both y-90 and also stereotactic radiation. I don't hear as much about radio-frequency ablation on this list. I am wondering if anyone has had it?? Also get in touch with NIH as there are at least two immunotherapy trials for our cancer that look most interesting. You have to have actual tumors of at least a cm so I cannot qualify at the moment but would like to when they come back. Good luck to you! Keep fighting! Tell us all about it, we want news! Much love to you. HollyMmmm I sure don’t see that it’s too much to ask for a Miracle. We do have them on this Board and its time for one to come through for your Dad. Wishing him the best of luck and please keep us posted on his progress. I m sure the next 3 weeks can’t come fast enough for your family.
Hi Cathy, my father got diagnoised january 2013 with stage 4. All blood work and tumor markers were normal, it was an incidental finding during a visit to his endocronologist for his blood sugar levels. My father isn’t a surgical candidate either, the tumor has taken over his left lobe and there are 2 tumors on the right lobe. His onc had put him on gem/ox, we’re going to have a scan done after his 4th round (3 more weeks) to see how the chemo has been helping. After the 6th round they’re going to see if radiation will be an option. We’re hoping and praying that they will just come and say that the tumor has shrunk enough that they’ll just do a lobeectomy and we’ll be done with this nightmare. Just believe in miracles, they do happen.
Cathy: I never had gem/CIS. I was on gem/ox. We had to stop after a few rounds because of toxicity. But it worked great! I met with my surgeon Feb. 2012 and scheduled my resection! I was so excited! Then during an “easy” embolization to prep me for the surgery they nicked my lung. I ended up with pneumonia and in that month the cancer grew again. Ugh! Surgery aborted. This time no surgical options anymore. Went on gem/Xeloda which shrunk the tumor but not the lymph nodes. So we tried stereotactic radiation. It worked! The cells are still quiet after 9 months.
My problem is a new node that just appeared. We now have to do something about it.
There are lots of us out here that are not surgical candidates… Many of us will chime in.Hi Cathy-
The Gem/Cis did not work for my husband. As he cannot have any additional radiation, he had Bland embolization (twice). This is similar to Willow’s sister, except the spheres are plain glass and work by blocking the blood supply. He waited 6 months to have a scan. Although his mets in the liver grew slightly, it wasn’t much. And he looked great/felt decent during the 6 months.He is now in a clinical trial at the Lineberger Clinic at UNC Chapel Hill, NC. The clinical trial is FOLFOX6 + an oral experimental drug called BKM120. He has a scan Friday to find out if it is working. I will definitely let everyone know if he has a good report. I believe this drug is being tested in many trials around the country.
Good luck to you and your sister!
Susan
My sister is not eligible for surgery and didn’t make it through an entire cycle of Gem/Cis before Drs at Stanford shifted gears and did radioembolization with yittrium 90 microspheres . This wS because chemo was making blood counts too low and tumors were not really shrinking. big tumor in portal vein was biggest concern. The y90 spheres are placed in the blood vessels that feed the tumors. Not sure if they’re used for bone mets but they are used for liver mets. She is waiting for scan in about a month to see results . Best to you and I hope this helps! Willow
Thanks for the information. I just finished the 15th session today and should finish the 16th on March 20. Then I will get a scan and then based on what my results are for that I will have to decide what the next step will be so all the information posted above will definitely help. Thank you to everyone! Plus if anyone has done something after the gem/cis 16 cycles if you could let me know what it is/was I would appreciate it.
Thanks
CathyI did a quick search for you Cathy using “surgery not eligible” and this is what it threw up here on the site.
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=1456957073
Hope some of these posts are useful for you, there are a lot to read through.
Gavin
Hi Cathy,
Shrinkage, stable and no new activity. Superb news!! Love hearing these words and phrases! And like Pam says, they are much loved around here! I hope that your next 3 treatments of Gem/Cis go well and please let us know how you get on.
Best wishes,
Gavin
Cathy,
That is great news that tumors are shrinking!! Shrinkage is one of our favorite words around here!! In regards to your question, you can type in something like not eligible for surgery in the Google box located on the right side of the page you come to first for this site. You can try different wording and see what comes up. Hope this helps. Take care.
Hugs,
-PamCathy..Percy provided us with a listing of chemotherapy agents currently used. I hope this helps and makes your search a bit easier.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7843
Hugs,
MarionStill new at posting but my scans on Feb 5 still show my liver tumor shrinking and my bone mets stable with no new activity! Yeah! Still have a way to go but heading in the right direction.
I have 3 more treatments of gem/cis to go then we have to figure out what will be next. Any suggestions of where to look for that info? I see several different ways that people are treated when not on gem/cis. My doctor has mentioned a couple different options and of course much of the decision will be based on the CT scan after that last treatment.
Also I have another question I’m really good at finding the posts of people who either started with surgery or their tumors had not already spread. Is there an area on this site where I can find people like myself..tumors have spread and not eligible for surgery at least right now?
Thanks to all that post…your info is really helpful.
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