jane638
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Hi Suzanne, thank you for the reply. Are your tumors now gone? What side effects did you have from the FOLFOX6 TREATMENT?
Suzannegm wrote:Hi jane638 – So sorry to hear about your additional tumors. I had resection, then was on gemzar/cisplatin but it stopped working, then had sirspheres, and then started FOLFOX 6 (which is a colon cancer treatment). Docs could not say if the sirpheres did the trick or it was the FOLFOX, or the combination of both. I would definitely ask your doctors about FOLFOX6. I have had low platelets since right after I started that chemo, and they had to reduce my dose 20% and eliminate the 5-fu push. I am now having to get it every 3 weeks instead of every 2 weeks also due to low platelets. But since gem/cis stopped working, I think my options were limited. As you may have read several times, whatever decision you make is the right one for you.Hello, I had a resection 12.17.08, then Gemzar and then 10/16 & 11/16/09 two Therasphere treatments. Is there any reason that this PDT treatment could kill the 3 tumors that have recurred since the last Therasphere treatment. I have not started chemo yet, but saw my oncologist today. He gave me a few chemo choices and left it to me to decide??? What seems to be the best new treatment for this horrible disease.
Jane638
ChicagoKatieloumatt wrote:Hi Julie,Welcome to the board. I have copied this from the Macmillan cancer website in England to describe PDT to you, hope it helps ~
Photodynamic therapy (PDT)
PDT| uses a combination of laser light of a specific wavelength and a light-sensitive drug to destroy cancer cells. In bile duct cancer it is used to help relieve symptoms.The light-sensitive drug (a photosensitising agent) is injected into a vein. It circulates in the bloodstream and enters cells throughout the body. The drug enters more cancer cells than healthy cells. It does not do anything until it is exposed to laser light of a particular wavelength. When a laser is shone on to the cancer, the drug becomes active and destroys the cancer cells.
Katie
Sorry, I quoted, but at the bottom of the page, so it was not attached to your message. Please tell me what chemo you were on. Look for my message of today 1/6. Thank you. Jane638
Suzannegm wrote:Hi everyone. Hoping for some advice, but maybe counting my chickens before they hatch. As of my last PET scan in October, I have no active disease and I’m obviously really really happy about that, but I have scans coming up the end of January and another PET the end of February, and I’m trying to get all my ducks in a row for when I see my oncologist at Emory to go over the scans. I know there are a few of us who have had successful treatment and are currently cancer free (or active disease free per my doctors). For those who have been cancer free for a while, are you still having chemo, but if not how did you decide to stop having chemo? Right now the thought of stopping chemo scares me pieces, but I haven’t even had the scans so I may be jumping the gun. I just want to be prepared for whatever the scans show, good or bad. Also, are there any thoughts on what happens if you stop a chemo treatment for a while (as in months), then the cancer comes back, can you go back on the same treatment or does your body adapt and you have to try a brand new treatment? I’m starting to panic myself thinking that if I do stop chemo, then if it comes back, I can’t go back on the same treatment i was on because it won’t work anymore. I’m probably rambling and sure hope this post makes sense. Thanks for any thoughts.Hello. I am very curious as to what chemo you WERE on and what treatments you had to stop this disease??? I had a re-section, then gemzar and just Therasphere. Unfortunately for me, 3 new tumors have recurred so I am trying to decide what chemo treatments is best.
Since you apparently had good results with what you were on, please tell me what it was.
Thank you,
Jane 638
ChicagoHas anyone been on nexavar. If so, was it successful in shrinking the tumors? I am starting a new regimine this Wed. 1/6 after 2 Therasphere treatments. That did kill off the existing tumors, but 3 new appeared within 1 mo. of the last treatment, which was 11/16/09. I was afraid of the gemzar/cisplatin combo because of the side affects. Natually I don’t want to lose my hair and I hate the needles. At this time I do not have a port and don’t want one. I was on Gemzar for 3 – 4 mos. but it lost it’s effect.
Hi, I just saw your message and have some questions. This was in Sept. 09, have you had any tests since? Are you still on Gemzar/Cisplatin? What were the side effects of this combination? I am seeing my onc this Wed. 1/6 and was thinking about nexavar. Anxiously awaiting your response.
Thank you,
Jane638zupton wrote:Today was my first CT after two cycles of Gemcitabine and Cisplatin. Prior to the treatment, I had a large liver tumor, some lymph node involvement, and some nodules in and around the head of my pancreas. The only hope that I’d been given was to pray that the chemotherapy controlled the spread, do chemoembolization to beat up the liver tumor, and then do massive, risky surgery including a liver resection and whipple.Well, my surgeon was shocked by the progress that I’d made in two cycles. He said that the pancreatic disease was controlled; there was no further spread; and the liver tumor shrank substantially. The docs couldn’t give me a percentage reduction in size, but said that it was, “conclusive and exceptional.” They also said that if the tumor continued to shrink, the surgery would be much less risky.
I’ll have another cycle of this, please! The docs agreed that we’d stay the course on the gem/cis for now and reevaluate regarding chemoembolization after another cycle. They also told me that they weren’t planning to do any surgery before the New Year. Unless something drastically changes, it will be a great holiday in my household!
This is the first real, positive news that I’ve had since I was diagnosed back in July. I realize that I’ve got a long road ahead, but am celebrating this victory!
-Z
Hi,
I have this dreaded disease too. I just had 2 Therasphere treatments, one 10/16 and the 2nd 11/16. Follow-up CT scan was 12/18. It showed death to the exisiting tumors but 3 new tumors in an untreated area along with pulmonary nodules of undetermined origin. Naturally, they are being considered mets due to the cancer. I’m scared, but am trying to do some homework re: chemo options. I HATE chemo! I was on Gemzar after a re-section 12/18/09, it worked for a while but then tumors starting growing so that’s when Therasphere was recommended. I was hoping that would do it, so am very depressed about the new developments.What chemo seems to work, with the fewest side affects. Appearance is very important to me in trying to deal with this. I don’t want to not feel well, lose my hair and still not get anywhere in stoping this thing.
Hello Suzanne,
I’m so happy to hear your good news. I was diagnosed 11/08 and have had a resection as well as 2 treatments of Therashpere. I go 12/18 for a CT scan and then see the Dr. on 12/22 to see what the treatments have done. I’m sure I will still have to be on some form of chemo. What were your side affects ofFOLFOX6? I have not heard of that. Did you lose your hair? I have been on gemzar but not in combo with cisplatin.
One thing for sure, the anxiety and waiting for the next text result are torture. How does one relax???
My prayers are with you. I hope you have a wonderful Holiday.
Suzannegm wrote:Well, I haven’t posted in a while but I do want to share my good news, hopefully it will be good information for others on this site.I found out today, with amazement, that there are no active tumors in my liver! As I type it, I can hardly believe it! To get to this point, I have had a liver resection in February, multiple rounds of cisplatin/gemzar, radioembolization in August of this year (which is now considered a success), and 3 rounds of FOLFOX6 chemotherapy. There is no 100% way to know if one or the other did the trick or if it’s a combination of both. I will continue with the FOLFOX chemo until, well I don’t know yet. But I will get another PET scan in 3 months.
I just want everyone to know that there is definitely hope to be had. I know this doesn’t mean I’m cured but maybe I can relax a bit and enjoy, really enjoy, my life without as much anxiety and worry as I have had for the last year (my husband and family too!).
This site means so much to me, and gave me hope when I needed it the most, and continues to give me so much knowledge and support. I only hope that I can give back as much as I’ve received.
Keep hope!
Hello Suzanne,
I’m so happy to hear your good news. I was diagnosed 11/08 and have had a resection as well as 2 treatments of Therashpere. I go 12/18 for a CT scan and then see the Dr. on 12/22 to see what the treatments have done. I’m sure I will still have to be on some form of chemo. What were your side affects ofFOLFOX6? I have not heard of that. Did you lose your hair? I have been on gemzar but not in combo with cisplatin.
One thing for sure, the anxiety and waiting for the next text result are torture. How does one relax???
My prayers are with you. I hope you have a wonderful Holiday.
Suzannegm wrote:Well, I haven’t posted in a while but I do want to share my good news, hopefully it will be good information for others on this site.I found out today, with amazement, that there are no active tumors in my liver! As I type it, I can hardly believe it! To get to this point, I have had a liver resection in February, multiple rounds of cisplatin/gemzar, radioembolization in August of this year (which is now considered a success), and 3 rounds of FOLFOX6 chemotherapy. There is no 100% way to know if one or the other did the trick or if it’s a combination of both. I will continue with the FOLFOX chemo until, well I don’t know yet. But I will get another PET scan in 3 months.
I just want everyone to know that there is definitely hope to be had. I know this doesn’t mean I’m cured but maybe I can relax a bit and enjoy, really enjoy, my life without as much anxiety and worry as I have had for the last year (my husband and family too!).
This site means so much to me, and gave me hope when I needed it the most, and continues to give me so much knowledge and support. I only hope that I can give back as much as I’ve received.
Keep hope!
Dear michmcd, thank you for your info. I can’t believe your CA 19-9 results. Are you on any drug along with Gemzar ? I have had one session of 3 treatments with 1 week off and on 5/6 will start the 2nd round. I have also had no side affects, but maybe I will after the 2nd round ? I have not had any blood work yet to see if there has been any improvement. I will have that next week, I think. How many treatments have you had ? Thank you again for hope. Jane
Hi Violarob,
I did email you too, because I am just starting Gemzar on 4/7. What type of chemo are you taking? Have you had to take it for 8 mos.? I am scared to death of chemo because I’ve seen and heard what it does to most people. I am so happy to hear you are doing so well, I haven’t heard to many say that. I hope I’m wrong. I’m most anxious to know what chemo drug is working for you.Thank you, jane638
violarob wrote:Dear Robyn: I hope your mom is doing well on her new chemo regimen. I also am being treated at the MD Anderson GI clinic, by Dr. Javle. (I wonder if you are being treated by Dr. Javle or Dr. Kaseb?)Anyway, I am about the same age as your mom, and I have been at MD Anderson for about 8 months now. I am doing really, really well! Good luck to you, and keep us posted on your progress. I hope your experience at MD Anderson will be as positive as mine has been.
Violarob in Texas
this is the text I want to quote.
Thank you all for your responses. I am so happy to hear that you all have had various treatments and done well. My doctors do want me to have either embolization or Therasphere, but (I guess) want the chemo first to kill any cells that might be floating around, if it’s possible to kill them? My bilirubin level is 0.4, so the spheres should be an option to me at some point. These 2 tumors recurred right at the edge of the resection area, so apparently they didn’t quite remove enough, but perhaps they simply couldn’t remove any more of the liver. This I don’t know.
Hello, I have this disease by have been told that I had no sclerosing cholangitis. I have had surgery but 2 tumors have returned. I am scheduled to start Gemzar next week and am terrified. Can you please tell me something about it? Did you have bad side effects, I understand some people tolerate it very well. Have you had embolization or Therasphere?
Barbara wrote:I went to the Mayo Clinic in Scottsdale, AZ today since we are here for spring training. This is what I learned:My liver cancer came from having Crohn’s Disease (which I have had since 1975) and it is rare for people with Crohn’s to get cancer in the liver since it would usually show up in the bowels. However, the Dr. Borad said that the fact that the liver tumor grew because of the Crohn’s means that it is less aggressive and responds better and people live longer.
The small tumors did not start as a result of the liver tumor bursting but grew from the liver and travelled to the outside casing of my bowel and are not floating around in my abdomen. These are my two sites-liver and bowel.
He was happy to see that my tumors had shrunk from the chemo since he said Gemzar (chemo drug) does not usually work. So he said I was doing well and stick with what I am doing now since being on his clinical trial means I would have to be off chemo for awhile and since it is working well, he didn’t want to see that happen. He didn’t rule it out when the chemo stops working and I have to move on to another drug therapy.
He agreed with everything my doctor is doing and said chemo won’t cure it but buys time and keeps the cancer at bay until maybe they come up with something that will cure it. Anything I receive has to be systemic and not spot treated because I have multiple sites. I feel it was worth the visit and it confirms that the treatment I am receiving is the right one.
Positive review, in general.
I also read this in an article.
Cholangiocarcinoma (cancer of the bile ducts) is more common among patients with primary sclerosing cholangitis. An estimated 9%-15% of patients with primary sclerosing cholangitis will develop cholangiocarcinoma, a very lethal type of cancer. Patients at highest risks for developing cholangiocarcinoma are primary sclerosing cholangitis patients with cirrhosis who also have long-standing ulcerative colitis.How many others have colitis or Crohn’s???
