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Since radiation in November, I have not been on any treatment because my CA 19-9 had dropped to 12. Well, after bloodwork, it shows my CA 19-9 has again dropped to 9.2!!! My tumor is slightly turning the same color as my liver......it is so stable that we were sent home with no orders for another 3 months!! Dr. Milind Javle says I am as stable as can be......its not usual to be as stable as I am...and the fact that my cancer marker is still moving in the downward direction. My liver and kidneys are in great shape....and the liver is regenerating from the radiation.
I asked Dr. Javle about Immunotherapy and since my tumor was so stable wouldn't it be a great time to attack it? He said he agreed it made sense but that is not how it would work. First off, Immunotherapy is still in clinical trials but has been approved for melanomas and lung cancer tumors. GET THIS: He stated he believes and hopes that Immunotherapy will be approved to start using in about a year if it is approved for CC. He truly believes it will work on CC and that it will be approved. I asked that if it was approved....could I immediately start getting it....he stated NO...you would THINK it would be like the Measles shot (you get the shot BEFORE you get the measles) but with Immunotherapy---you have to have an active tumor/tumors to start the process of Immunotherapy. I left feeling so hopeful and that it is just a matter of time (which we all know is sometimes NOT on our side) before we can squish cancer (even for our rare CC)!! Feeling blessed to hear all of this first hand from one of the top drs in the US. at MD Anderson for cholangiocarcinoma!!!!
Hi Iowa Girl!!
I am on Lovenox injections twice daily 12 hours apart. I have blood drawn every two weeks called an Anti XA (pronounced Anti Ten A) and I try to keep it around .50 to .75. At first they did not monitor it and I had a brain bleed. Coumadin is harder to regulate as it stays in the bloodstream longer. My heart dr who sucked out all of my clots (hundreds) said my blood doesn't like the cancer so it wants to clot...I was told no PICC lines, no port (I had it removed while in the hospital) no filters (and who needs them if you are on Lovenox). I hope you have good drug coverage...it's about $1000 a month but due to my husbands insurance, we pay $12. Feel free to call me if you have more questions at 618-392-2239. God Bless!!
Thank you all for the positive comments! I AM ALIVE and today as I sat outside sipping on my coffee, amidst a woods with birds chirping, squirrels shimmying up and down trees, wildflowers blooming everywhere.....and a few weeds..... that God is always there. I just said a silent "Thank You God!" We all have no choice but to march on until we can march no more. I am blessed with the CC Foundation....and all of you on this site. Keep on Marching!!!
https://www.youtube.com/watch?v=DBH4Wwx … ture=share
Please feel free to click on the link above to see my Inspirational Speech at our Annual Relay For Life. A $1,000 donation is given to the Cholangiocarcinoma Foundation from our funds raised for the ACS. We came in first for most money raised at just over $10,000.
Yes Marion, I received an e-mail from you. WOW....I feel honored! I e-mailed you back and will check my e-mail for updates from you. Chicago......Hmph! ;-)
Marion, our Relay is on May 3 but I would LOVE any and all info I could get my hands on. I am adding the symptoms of CC in my "talk" and anything you can get to me...Hooray! I had a call this am I'd like to share....I had a man from Israel call me today and said he read my blog and wanted to ask me some questions.....I answered them all as honestly as possible but told him I wasn't a dr.....I also talked to his wife. So delighted my blog reaches SO many people out there. God is good ALL the time......ALL the time, God is good!
Another update since IMRT 5 months ago. Tumor is inactive....no lymph nodes are inflamed except for some due to chronic sinusitis. All lymph nodes are clear and my CA 19-9 went from 10.2 to 11. My CEA is .09! This is the best report to date. Dr. Javle at MD Anderson has sent me home with no restrictions and just live life to the fullest. Hoping it does not spread or wake up for a loooooong time! It is mostly necrotic so lets hope for continued death!! Enjoyed trips to St. Thomas and Hawaii (each one was 10 day trips). Biking and doing my first 5K this past weekend. Life is good! I am the keynote speaker for our Relay For Life this year and we take a portion of that money (whether the American Cancer Society likes it or not!) and send it to the CC Foundation. Going to see a dr this week about my sinuses.....a dr other than a cancer dr...hmmmm, that's a new one in a long time. I'm 3 years, two months into this battle and have had many bumps in my journey but I feel better now than I have since getting CC. Glory to God in the highest!!! I have now reached across the nation to people in New Zealand and Venice, Italy to CC patients. Thaks to this site, I believe we are all drawn together and woven into an army of our own!! Thank you all for that!!
I finished IMRT in Early November, then returned to MD Anderson in January for a PET scan. It was clear and my CA 19-9 was 10.2. Dr. Javle said I was clear to go three months with NO treatment. I came home and felt the best ever in a very long time. I just returned for a checkup after that (3 months later) and scan are still clear....no lymph nodes are bothersome to them or any concern. Tumor is mostly necrotic and inactive. My CA 19-9 at now at 11. The dr said it was the best report ever since coming to MD Anderson. I was diagnosed in Feb of 2011 and started seeing Dr. Javle in April of 2011....after going to Mayo who gave no hope whatsoever....this wasted a few months but totally worth it with the expert care I receive from Dr. Malind Javle and MD Anderson. I am biking 10 miles on some days and walked in a 5K over the weekend. Feeling better and better every minute of each day. Feeling very blessed and thankful!!
I know I read a lot on this site but do not post nearly enough. I was diagnosed with ICC in February of 2011. Doctors said I had this dreaded cancer for appr. 3 years before I was diagnosed. After going to Mayo Clinic and not being the happiest with their thought....I turned to MD Anderson...and I have never looked back! After Gem/CIS...and an allergic reaction after 7 months, I had 28 treatments of IMRT (Spring 2012). At my 3 month checkup after the radiation, things did not look much better....so I was placed on Irinotecan. At the next 3 month visit, my tumor (too large to remove) was necrotic and I was considered stable and was advised to just stay on the Irinotecan. I was on Irinotecan until my last dose on September 30, 2013 (all the while remaining stable and CA 19-9 reducing each time). I went for a checkup in October to MD Anderson and I had a small growth at the dome of the liver (attached to the necrotic tumor). We decided to do IMRT again (13 days of treatment-twice daily......so 26 treatments in all) and target that little booger! I just returned from MD Anderson where a PET scan showed that the new tumor now shows no FDG avidity and is RESOLVED!! There are a few scattered nodular opacities in the lungs but Dr. Javle is not too worried as he believes that it might be from the radiation. The opacities are not FDG avid at this time. My CA 19-9 is now at an all time low at 10.2!! I was told to go home, live, no chemo or radiation. Just enjoy life and go back in 3 months and hope for more stability. Tumor removal is not an option (and I have been to 4 different well known doctors who have all said the same thing) but Dr. Javle states I am doing so well, why would I want to do that. Dr. J states that I have a chronic disease and we will treat it as problems arise.
As he was leaving the visit, he said "By the way I had this guy from New Dehli, India call me and somehow knew I was going to be in India next month for a Multi Disciplinary Conference. He pleaded with me to see his mother who has been diagnosed with cholangiocarcinoma." Dr. Javle told the man that he just didn't know if it was possible to see his mother as he had no office, no use of equipment, etc. The man pleaded and Dr. Javle finally agreed to see his mother. Dr. Javle asked the man..."By the way, how did you get my name?" The man stated "Patty's blog!" Dr. Javle didn't quite understand until the man said "Patty, your patient from Illinois" So...now Dr. Javle says I am known internationally in the CC community through my blog. Dr. Javle also said...."I believe people who are members of the CC Foundation are like a very close knit family....and I just said "YOU BET WE ARE!!!! God is good....all the time!!
BTW......my blog is over 94,000 hits at this time......I love knowing so many people are following my journey......from all ends of the earth!
I just got back from MD Anderson where I was told my tumor had shrank but it was slightly more FDG avid. I am currently on Itrinotecan every two weeks. Dr. Javle at MD Anderson (after meeting with a group on doctors to discuss my case in a conference)is suggesting IMRT....for the second time.
Last summer I had the 28 treatments and at first, they thought it didn't worked but later decided it had made the majority of my mass inside the liver necrotic. Basically it is very low - activity wise. BUT at the dome of the liver there is a spot that is still showing up FDG avid. They would like to do IMRT again for 13 days (just on the spot showing up brighter)...getting it twice a day-once in the am and once in the pm. Has ANYONE or does anyone know anything about doing this. The oncologist said it is not done a lot but they feel it will be of benefit to me. Dr. Das, the oncology radiologist says they HAVE did this in the past as MD Anderson but not ALOT. Dr. Javle has tried to get the oncology team to agree to do the IMRT for the past 6 months but since it shrank a little more this time, the oncology team is ready to say yes (the shrinkage made the tumor a little further away from my heart). They say NOW is the time. My CA 19-9 is at 19.....3 months ago, it was about 24.6. I am confused and worried about scar tissue....heart damage....any additional info or comments is appreciated.
I talked to another MD Anderson patient who alerted me to a new machine MD Anderson is trying to get FDA approved right now. She said it has already been tested on alot of different animals and is now built to hold up to 800 pounds. I Googled it and it is for pancreatic cancer but also VERY promising for liver patients. I would like any other input if people have heard of this machine "in process"
Hugs to all you CC patients and survivors!!
Well, time has came and gone....I have 3 days left of IMRT. My only symptoms were tiredness starting about day3 and lasting to Saturday evening. I also has some side pain where liver is located on right side. I also had a feeling that my belly was on fire about Thursday to Saturday so I just drank ALOT of water which is key anyway with this cancer. I have never had nausea or diarhea during the treatments. My care at MD Anderson and the radiation team I saw every day.....5 days a week, is what kept me so positive!!
So ready to start home this coming week. I will return in 6 weeks to see if it did any good at all.
Somethings I learned after starting treatment:
1. IMRT only treats the mass/tumor so it can spread to other parts of the liver or body
2. It might not work at all but to hope for stabilization to buy me more time
3. Do NOT eat for 3 hours before your IMRT and there is a less chance of getting sick.
4. Drink LOTS of water before treatment up to minutes before the treatment helped me to NOT get the "belly burn" feeling.
5. Hope and pray for the best!!
Patty in Illinois
I have stage V ICC. I was diagnosed in March of 2011 after a trip to the e-room for what I thought was gall bladder pain. After CT and MRI, it was confirmed I had a tumor in the liver. I then went to Mayo Clinic for a second opinion, where they offered pallative care. I didn't like that so I contacted MD Anderson and met with Dr. Javle. I had NO pain, no itching, no weight loss although I was very active and rode my bike up to 25 miles a day or walked. I also went to the gym. Dr. Javle stated I had the ICC for atleast 3 years. Mine is slow to grow but slow to shrink. For the first year (after diagnosis) it was pretty stable....I had Cisplatin/Gemzar for almost 6 months along with Tarceva. I then had an allergic reaction to Cisplatin so we switched to Xeloda and Gemzar along with Tareva. (In between all of this, I had blood clots, was put on a blood thinner, had a brain bleed due to blood getting too thin (I was in the hospital for 9 days)so they pulled me off the blood thinners completely, then I got the blood clots again. Now I take Enoxaparin as a blood thinner and it is tested weekly for clotting factor). I then had a reaction to Xeloda and they just put me on Tarceva and Gemzar. While on just the Tarceva and Gemzar, my tumor decided to get "brighter" and I had two lymph nodes close to the liver that were FDG avid. After a biopsy, they showed to have cancer cells in them. So, I am moving to Houston, Texas to get 5 1/2 weeks of IMRT starting April 23rd and will also take Xeloda again and an allergy pill to hopefully keep from having an allergy from it. I still do not take any pain meds. So I basically had it for 4 1/2 years total with no symptoms. I have been told I will never be a candidate for a transplant nor a resection (unless my tumor shrinks alot). I NEVER ask when my time is up or how long I have to live. I don't like deadlines and I would just feel like it was a ticking time bomb. Live each day, let the little things go by the wayside and just stay positive!
I had my planning appointments for IMRT and they are also putting me on Xeloda along with an allergy pill as Xeloda has already broke me out in hives. I will take two pills in the morning and two in the evening while getting IMRT 5 days a week for 5 1/2 weeks. My first treatment is April 23rd. I have also been introduced to a Dr. Kelly who is such a calm, caring man. He works under Dr. Das in the radiation oncology department. I will keep you posted after a few treatments to keep you updated.
I will be there for IMRT treatments starting April 23 for 5 1/2 weeks. Feel free to call me a few days before you come down and if I am feeling ok from the treatments, I would love to meet up with you. My cell phone is 618-843-5367.
Stave 4 Intra hepatic CC
I will start IMRT on April 23. I will receive it 5 days a week for 5 1/2 weeks at MD Anderson. Dr Daas is my interventional radiologist, Dr Javle is my Gastro dr. I was at MD Anderson last week for a biopsy as on my PET scan about 3 weeks ago showed my tumor had slightly grown and I had 2 lymph nodes showing brightness. The biopsy further concluded they were cancerous. So, I went from starting a new chemo regimen today to cancelling it and making flight arrangements to get the CT scan and planning treatment instructions on March 13. I will fly home the same day, then return a week later to start treatments. I am scared of the radiation side effects and what they might do to the rest of my organs. I will miss my daughters college graduation, my Walk n' Roll day where we donate some to The Cholangiocarcinoma Foundation. Any one out there with words of advise, experience of IMRT, I appreciate any and all responses. I am in good shape and still work full time. I was diagnosed in Feb. 2011 but had the cancer for over 3 years without a diagnosis. I recently had the honor of meeting Catherine Simms Dunnegan at one of my fundraisers. She drove over two hours to meet me and support our cause. Sorry to ramble on....just couldn't leave that last part out. God Bless~
Gavin and Marion: I posted my blog back in the 'blogs' section with the link as the first post. I hope this is what you were referring to!! If not, feel free to remove it and give me more guidance. Thanks again!
Here is the link to my blog about living with intrahepatic cc!
Lainy: Thank you for your words of encouragement!!
Marion: I would be happy to post my blog to the blog thread on this site! Unfortunately, I'm not sure what you're referring to. What is it and where is it at?
Feel free to check out my blog. Ihave had Stage 4 IH CC for one year.
My doctor in Houston, Texas states I have had intra hepatic CC for atleast 3 years BEFORE they found it and I have had the diagnosis for almost a year. I had no signs but pressure in the chest. Dr did sonogram of my heart, stress test (appr. two years before diagnosis), and I passed them with flying colors. So I didn't ask anymore questions about why I was feeling pressure and the dr acted like I was a nut so I blew it off until one evening I had the extreme pain in my chest radiating around my back. Went to e-room (on a Friday evening) and they stated I was having a gall bladder attack. Gave me pain meds and told me to call a gasto dr on Monday. I did, had surgery date to take out gall bladder, but they decided to do a sonogram the day before surgery and that is when they found the tumor inside my liver. Surgery was cancelled. I have seen three mojor cancer doctors who specialize in CC and they all say that my tumor is too big to remove. In the year that I have known about my tumor, it has not grown (with chemo and tarceva)but it also has not shrunk.
I am Patty Corcoran, just turned 47 on January 17 from Olney, Illinois. I was diagnosed in Feb. 2011 with stage 4 inoperable intra-hepatic CC. I first went to Mayo and they offered pallative care. I then went to Houston to MD Anderson and am under the care of Dr. Javle. I had a consult with Dr Chapman at Barnes Jewish in St. Louis but my tumor is abot 11cmX10cm and wrapped around alot of the veins/arteries in the liver. No dr will touch me unless my tumor shrinks significantly. So far they have had necrosis (dying of the tumor somewhat) but NO shrinkage. I meet with a radiation oncologist when I go back to Houston in March. I believe MD Anderson is also just using pallative care but are not saying it with those words where Mayo just flat out told me it was pallative care. The doctors said my tumor is the type that grows appr. 3 cm per year and that I have had it for a few years (atleast3) with no symptoms. It has not grown any since I have started chemo and Tarceva BUT it hasn't shrank either.
I am re-married for 11 years and have four daughters from my first marriage. I have two beautiful grandaughters and a grandson on the way in four months.
I started on Gemzar/Cispl and after 6 months I had an allergic reaction to the Cisplatin. I have also been on Tarceva since I started this journey. I was put on Xeloda after the Cisplatin reaction and then about two months later had an allergic reaction to the Xeloda. I am on blood thinners as the cnacer is doing funny things to my blood. I have had blood clots/surgery to remove them, I have had a brain bleed (stroke) from too much blood thinner, and now am keeping it regulated by Anti Xa blood tests to test the clotting issue. I still work full time and plan on leaving for a trip to Costa Rica on Thursday. Ready for a little R & R!! I have a blog at pattysjourneyoffaith.blogspot.com
Welcome to the BEST site for info and support Can I ask how big your husbands tumor was? I hope he recovers fully and HUGS to you as his caregiver. I am stage IV with CC and my tumor is 10 cm X 10 cm. No luck with a surgeon taking my tumor out at this point.
Patty in Illinois
Last week while getting my Gemzar/Cisplatin (every 14 days), I had an allergic reaction to the Cisplatin. My Dr says I will never be able to take that drug or any drug in that family of drugs ever again. My oncologist called Dr. Javle at MD Anderson and they concurred that they will add Xeloda to my chemo regimen (twice a day).
I have no symptoms of cancer and take no pain meds. I am 46 and work everyday. I take Tarceva also. I was just in a 5K fundraiser over the weekend. I am a stage 4 CC patient.
My question is this....Has anyone ever been on the Gemzar/Xeloda/Tarceva regimen before. My dr. said severe diarhea is the worst thing from the Xeloda that might happen to some extent or it could be so severe they would take me off of it. I have had no side effects from the Tarceva except for my belly burned a little.
Just looking for any input/comments/guidance on what might help the side effect before they get severe from the Xeloda!
Patty in Illinois
Posts found: 1 to 25 of 27