February 11, 2018 at 3:16 pm #96624
Well, I had a good run with this Trial FF21101. It reduced well in the beginning, then just pretty much stayed stable. But my last scan shows progression. They told me that one person is still on it longer than I, and a handful have had progression in the end. So, I’m off again researching what currently holds some promise. (Is anyone trying immunotherapy having PD L1 but not having MSI high or the Mismatch MMR? Or is that still critical to have?) Otherwise, fight on.September 20, 2017 at 10:32 pm #94566middlesister1Moderator
I am so sorry your mother had the recurrence, but wanted to welcome you back and look forward to hearing of many more years of NED in her future.
CatherineSeptember 20, 2017 at 6:26 am #94567mlidoudouMember
I agree with BGlass and Hercules that a second resection for a localized recurrence is a good treatment option. My mother, like you, had a recurrence after 5 years. Luckily, she was able to do surgery to remove the tumor in the liver. Before her second surgery, we also explored other options and found that surgery is still the best option for a localized recurrence. After her surgery, my mother also received immunotherapy as adjuvant therapy. So far she is NED. So please don’t take your primary doctor’s comment that surgery is not working for you.
MaggieSeptember 6, 2017 at 11:51 pm #94565herculesModerator
Dear ChezWright , I am sorry to hear of your recurrence, if you read studies of long term survivors many have multiple resections and I am hopeful you can find a team capable of this second resection if the new tumor is in a operable location ( you were blessed the first time, why not a second time ? ) Don’t let anyone dash your hopes without taking a serious look. You just have to find the doctor willing to look and more. I wish you the best , PatSeptember 6, 2017 at 2:18 pm #94564bglassModerator
Your primary doctor’s comment about your resection “not working” caught my eye. What an inexplicable comment given your very long spell of NED!
People can and do have second resections of the liver, and sometimes resections are done for other metastatic sites (e.g., lungs). The criteria seem to be generally the same as for an initial resection, e.g., no evidence of systemic spread, being healthy enough to withstand the surgery, tumor size and location, etc.
Two board members who have posted on their repeat resections are iowagirl and lisacraine. Their stories can be found via the search engine.
I attached an example of the research on this topic because in my own experience, I have found handing the doctor a study carries more weight than saying, “I read on a discussion board…” There are a bunch of medical journal articles on the topic of repeat resection for a cholangiocarcinoma recurrence if you want to search out more information.
With newly diagnosed patients whose CCA is confined to the liver, it is important to seek good surgical opinion(s). I guess the same advice would seem to hold for recurrent CCA confined to the liver. Other localized treatments are also options, so it is good you are exploring nanoknife.
Regards, MarySeptember 6, 2017 at 5:11 am #94563chezwrightaol-comParticipant
Thank you both for answering…No..genomic testing has never been done, but perhaps Dr. Javle will have that done. I also have a call into Dr. Christopher Wolfgang at Johns Hopkins who was written up as having a lot of success with NANO Knife. I am not sure how it is determined which would be better. That is something I will ask Dr. Javle. I have to go through this discussion board to see if anyone has had good results with the NANO Knife treatment..At the moment fares are quite reasonable to Houston..perhaps because of the hurricane’s effects? Thank you for, Mary, for mentioning that treatments have changed a lot. The doctor that I was assigned to after my beloved Dr. Choti and his successor left, said that not much had happened in the past seven year (when I asked him).
Do you know if surgery is ever offered a second time if it is still localized? If not, why not? (the Johns Hopkins doctor said he wouldn’t do surgery and my primary care physician said it wasn’t done again because it didn’t work the first time..hey..I’ll take 7 more years anytime!)
Thanks so much..Kathy I highjacked someone’s thread so I will start a new one…September 5, 2017 at 4:23 am #94561bglassModerator
I was also sorry to hear your CCA made a reappearance after such a long absence. Thankfully, you and your doctors were still watchful and saw the movement in CA 19-9. Some of our doctors seem to believe a CCA patient can be cut loose after a certain milestone is reached, but this cancer demands that patients stay alert.
The study Katrina is participating in does sound promising (and a big thank you to Katrina for posting on this). I looked at clinicaltrials.gov to see what is available in Maryland, and some of the trials other patients have reported about on this board have sites here (I am also in Maryland). Apparently INCB054828, AG-120 and pembrolizumab studies are recruiting in Maryland, possibly at Hopkins. If you are concerned about travel, you might look up on the clinicaltrials.gov website which trials are closer by, then ask Dr. Javle about them when you speak with him. If you search a treatment name on this board, you may find postings re other patients’ experiences with them.
I had the same question as Melinda – have your doctors discussed genomic testing with you? CCA treatment has changed a lot since you were first diagnosed. The testing may be able to identify genomic defects for which there are targeted treatments available.
Please stay in touch as you navigate treatment options, and best wishes that this goes smoothly with good results.
Regards, MarySeptember 5, 2017 at 1:30 am #94562mbachiniModerator
I am so sorry to hear of your recurrence. Happy that you will be connecting with Dr. Javle. Did you have a biopsy done with molecular testing? Please keep us posted as to what Dr. Javle says. Sending you all my best.
MelindaSeptember 4, 2017 at 7:07 pm #94560chezwrightaol-comParticipant
Katrina…I am back on this board after almost a year away. My CA-19-9 marker kept rising and in March 2017 was at 57.5 which is high for me (at time of surgery 7 years ago it was 85). Nothing showed on my scan at that point so the Johns Hopkins doctor took a wait and see approach. I have just had an MRI which shows recurrence. After 6 1/2 years feeling I was getting closer to being out of the woods, it is very discouraging. I have a conference call with Dr. Javle at MD Anderson on Wednesday of this week to discuss the recurrence. I would appreciate hearing more about what you are doing and the others you know of. It is daunting to think of going from Maryland to Texas so often ( I have a 17 year old still at home and a college freshman..Plus others way grown already)…but if it offers such hope, i’m going! Can I contact you? or you me? I’ll send my phone.
Thank you. It is wonderful to read such good news. Congratulations!July 20, 2017 at 3:56 am #94572iowagirlMember
Fantastic news. I hope to continue to hear more about this trial and results….and your continued success. We all need to hear first hand stories like this.
JulieJuly 19, 2017 at 2:53 pm #94571positivityParticipant
Thank you for sharing, and it’s always great to have stories of treatments that are working.July 19, 2017 at 9:54 am #94570middlesister1Moderator
Thank you for sharing the great news and information.
I look forward to hearing about continued great results.
CatherineJuly 18, 2017 at 7:47 pm #94569marionsModerator
Katrina……I am over the moon for you. Virtually no side effects and significant shrinkage of 20%. Wow. You are doing great.
Thanks for sharing the tips and hints with all. I expect continuous good news coming your way?
Thanks again for keeping us informed, we are with you, all the way.
MarionJuly 18, 2017 at 6:42 pm #94568
Update on this Trial: Very good news. The 2nd CT showed a 20% reduction in my small tumors.
And the very best thing about it is it has few, if any, side effects. And that various types of cancer patients are all having good results with this. I am down to one visit per month for CT and testing now. So please, share this info with anyone with solid tumors. My 3rd CT is end of next week.
For those who aren’t close to Houston, where they do this Trial at MD Anderson, I knew that weekly visits for 3 months, then bi-monthly, than monthly is an expensive drag. If you can’t live with a friend or friend of a friend, it looks like one of the best deals is to find an Airb&b that you like, its proximity to MDA, and cost. I know of one with a room and private bath in a lovely woman’s home. She has cancer too. She also offers transportation to and from your doctor appointments. ($40/day or check monthly rates). But if ever she couldn’t, there is always Uber or the Metro busline. She is close to MDA.April 9, 2017 at 10:02 pm #13192
I began this second part of a Phase I study on this radiotherapy (immunology) y90 plus antibody at MD Anderson. It is for any solid tumors I believe. MY first CT last week showed my 3 little tumors to be “Stable.” Stable works for me. The Trial, under Dr. Subbyia(?) began last January. The team has told me that it is doing well all round with all the types of cancer trial patients they have tried. Good news: No side effects!!! Wow. Bad news: The first 5 months, you may have to visit MDa WEEKLY even if only for blood tests. If you need at least stable, this is an option as long as they have slots.
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