May 5, 2016 at 1:43 am #78792marionsModerator
Maria….Melinda had mentioned the difficulties with lab space. Additionally, I was made aware of another problem related to the molecular testing lab, which should resolve soon. There is a chance that I can address this issue with Dr. Rosenberg, tomorrow. He will be presenting at the AAADV meeting (https://www.acceleratingworkshop.org/) I am participating as well and will keep you posted on the outcome.
MarionMay 5, 2016 at 12:38 am #78791mariajgbParticipant
I’m not sure if this has been posted elsewhere but I wanted to update that we’ve recently heard that this trial is on hold. The nurse at NIH we were corresponding with (we’d already had bloodwork done and were preparing to go for our first visit) emailed us with the information. She said the trial was “on hold as we make some updates and actively look for more space for our labs” and that they were uncertain as to when it would reopen.
Has anyone else heard similarly? Any idea what’s going on? We were very disappointed to see a potential avenue for treatment closed down.April 28, 2016 at 11:27 pm #78790middlesister1Moderator
so happy to read this update-
Lots of hugs,
CatherineApril 23, 2016 at 5:47 pm #78789gavinModerator
Thanks for the update and brilliant news!!! Thanks loads for sharing that with us all! Yep for sure, you and your treatment and progress gives so many people tons and tons of hope!
Big celebratory hug for you!
GavinApril 23, 2016 at 5:05 am #78788
I had my checkup at NIH this past Tuesday. I am very happy to report that there is absolutely NO change from January. The reactive t-cells are still present in my circulation and keeping the cancer in check. I will return in another 3 months or so and have a PET again to compare to the one I had in January. I can’t tell you how grateful, happy and relieved I am, after January’s check up I have been a bit nervous!
So to date it has been 30 months since last treatment. I am not cancer free, but can live a great quality of life. I am very happy with these results and hope for others to have them as well. I know that a colon cancer patient has made her official partial response in this treatment. I believe there is a cc patient who has been stable for 4 months now……more hope.
I was able to meet Chris and Laura in person at NIH this week and enjoyed getting to know them in person. Chris posted his story in this thread a few posts up.
All my best,
MelindaFebruary 18, 2016 at 6:08 am #78786
Chris and Laura,
The 12 people that have been treated are not all cholangiocarcinoma patients, there is a mix of solid cancers being treated. What I know for sure is that one of the three is a colon cancer patient, she just received her official partial response a few weeks ago and we stay in touch by email quite frequently. She is doing great. I believe, but am not certain that one was an esophageal cancer patient and am not sure they officially hit the partial response. There is Lori Whiting, who is happy for me to share her story, she is a fellow cholangio patient. She has done the treatment twice, being the first to add the immunotherapy drug, pembrolizumab to her second treatment. She has had a mixed response. Just this past month her liver and lung tumors continue to shrink, but they found 4 mets to her brain. They are using radiation to the brain and feel quite confident they can get them with that and are continuing to treat her on the trial with the pembrolizumab.
With the addition of the pembrolizumab, I am hoping to see more responses. They are also working on using the receptors from the t-cells and putting them on young, healthy cells in the lab and then treating with those. ……(more complicated than that, but I am not capable of description!) My point is there are continuing to improve the immunotherapy treatment all the time!
Dr. Javle is highly regarded when it comes to dealing with cholangiocarcinoma and I know several of his patients. You would definitely be in good hands there.
It seems to me you are doing everything you can to have a plan B, that is what is important, always striving for the next best treatment and hanging in there until we find a CURE!
I very much felt fatigued during and after chemo. I really didn’t beat the fatigue until after I was treated at NIH. Then I was able to start walking and exercising again which helped.
I would also love for you guys to introduce yourselves in the introduction section so others can see this post and welcome you to the discussion board. I am so glad you are here, you will find much support from everyone on this board. I am happy that the TACE is doing good…..progress is good no matter what!! Take care and I am sending hugs and prayers your way!
MelindaFebruary 17, 2016 at 7:18 pm #78785cforreyParticipant
We just finished watching your presentation at the 2016 CCF meeting and want to thank you for your strength in sharing your story with the cholangio community. It is so powerful to see another person’s story, to understand how similar our experiences are. You are truly an inspiration to us. We wanted to write you to share our story and to seek your insight and advice, particularly on the NIH trial. I am a 43 year old who was diagnosed with stage 4 intrahepatic cholangiocarcinoma in June 2015. In addition to a large tumor (~10 cm) in the liver, a number of smaller satellite hepatic tumors were identified as well. The local lymph nodes were swollen and about 10 pulmonary tumors (~1 cm) were also identified, indicating metastatic disease. Shortly after my diagnosis, my wife heard your story, which has served since to provide us with inspiration and hope. We have a 3 year old daughter and a 4 month old son, who also provide us with inspiration. We have two beloved dogs who are part of the family and have provided us with great support as well!
A quick rundown of my treatments to date: We are located in Maryland and have been working with Johns Hopkins. Starting in July, I have had two chemoembolization (TACE) procedures targeting the large tumor in the liver. I have also been on Gemcitabine/Cisplatin for about six months to attack the metastatic disease. (I appreciated your description of the Gem/Cys treatment and steroidal side effects.)
We were very interested in enrolling in the T-cell immunotherapy NCI clinical trial at NIH that has been so successful for you. Last July, after a CT scan showing progression (new and growing tumors in my lungs), we worked with NIH to determine my eligibility in their trial. We sent blood samples, biopsy material, etc. The necessary markers were identified that would have made me eligible. However, and here we can report some good news, the TACE procedure at Hopkins has actually turned out to be quite successful in killing cancerous cells in my liver, to the extent that there was no “kill site” identified, i.e. no good location to harvest pure tumor cells. NCI essentially told me that I would need to grow some new pure tumor material for them to have enough material to work with. The cm-sized tumors in my lungs were too small to extract, as laproscopic techniques would require tumors at least 2 cm in diameter.
Finally, we traveled to MD Anderson to meet Milland Javle, who said he knows you well, to find out what other emerging treatments might be available to us. He mentioned targeted chemotherapy and immunotherapies as being possibilities.
Currently, the size of the lesions are stable to slightly decreasing. The decrease seems to be mostly in the liver tumor and may be due to the TACE procedures, which killed many of the cancer cells, leading to slow shrinkage over time. We have reached the end of the standard-of-care Gem/Cis treatment (about 6 months of treatment). While additional gem/cis chemo treatment treatment is not required at this point, we have decided to continue this treatment for the foreseeable future. I have mixed feelings, because I am too fatigued to work and am becoming despondent being stuck at home in a useless state.
We are trying to learn as much as possible about the treatment options available so that when we reach a state of progressive disease, we can make an informed decision. You mentioned in your CCF meeting talk that something like 12 (?) patients have been treated in the NCI trial, with 3 having partial responses. Could you clarify the number of patients with solid tumors that have been treated in the trial, the number of cholangio patients, and the number of patients who have responded? Of course, it is difficult for the public to get information about what is happening in ongoing clinical trials. BTW, the Washington Post just published an article yesterday about an Adoptive Cell Transfer study in Europe: https://www.washingtonpost.com/news/speaking-of-science/wp/2016/02/16/why-its-too-early-to-get-excited-about-this-unprecedented-new-cancer-treatment/?hpid=hp_rhp-more-top-stories_no-name%3Ahomepage%2Fstory.
I also am curious whether extreme fatigue was ever an issue for you. I have found such fatigue to be the primary obstacle for me in getting back to work and living as I would like to live.
Thank you once again for what you are doing for the community,
Chris and LauraJanuary 18, 2016 at 1:28 am #78783middlesister1Moderator
Melinda- wishing you the best- you are our shining star. Even if it wasn’t for CC, anyone who can raise such a large and wonderful family, deserves an award. With clinicals, it is frustrating to see that most make you progress on treatments which on average can only extend life 3 months and also wear the body down. I hope they allow you to get on new treatment ASAP.
Matt- hope you’re doing well.
CatherineJanuary 18, 2016 at 12:58 am #78782mattreidyParticipant
Let me know if you do start it – I’d love to know someone else taking it and would be happy to answer questions or compare notes.January 18, 2016 at 12:52 am #78781
Technically by RECIST criteria measurement, criteria of the trial, I have not yet shown progression of disease. In fact, with the way the measurements are….there was no change.
My husband asked that question to one of the team members, why not just start the pembrolizumab right now, and he said he thought that would be a good idea, but I don’t think it was brought up again with the rest of the team. I will definitely shoot off an email in the morning to find out why.
MelindaJanuary 18, 2016 at 12:06 am #78780mattreidyParticipant
Thanks so much for the update. Your long-lasting response to the treatment 27 months ago is still amazing.
If you’ve got a compatible mutation, why you wouldn’t start the pembrolizumab/Keytruda immediately?
-MattJanuary 17, 2016 at 10:53 pm #78779
Dear CC Family,
I just returned from NIH, where I had a PET scan, CT scans and MRI, along with blood work. It has been 27 months since my treatment. I have had NO other treatments in that time frame. My tumors have shrunk incredibly in that time.
While I was hoping that this month’s scans would show more shrinkage or proof of just scar tissue remaining, that was not the case. My results by criteria of the trial were STABLE, which is GREAT! Unfortunately, the PET scan showed increased uptake in a handful of tumors in my lungs, except one, which showed no uptake at all! By eye they also felt that a few lung tumors were a bit plumper in my lungs. These results leave us wondering if this monster could be on the rise again. I will return in 3 months and depending on scans then, we will form a plan of action. It is also important for me to note that the spots on my liver had no uptake of glucose as well on the PET, which is also GREAT.
So all in all, these are great results. I can’t deny that my heart sank a bit at first but I know that what has been accomplished in 27 months is amazing , wonderful and miraculous!!!
They have added to the treatment the drug pembrolizumab. They feel that this could increase the response to the mutation reactive t-cells. So if worse comes to worse, I will most likely do the treatment again with this addition, but for now it is a wait and see.
I still hold so much hope for the future treatments coming our way. Hang in there, good things happening.
All my best,
MelindaOctober 31, 2015 at 12:28 am #78778marionsModerator
The NCI team is already moving ahead with plans for an early phase clinical trial that follows on these findings, Dr. Rosenberg said.
http://www.cancer.gov/news-events/cancer-currents-blog/2015/tumor-specific-mutations-immunotherapy?utm_content=sf42099966&utm_medium=spredfast&utm_source=facebook&utm_campaign=National+Cancer+Institute&cid=fb_NCIMain_nci_immunotherapy_sf42099966October 30, 2015 at 7:40 pm #78777
Wanted to share some more on the research of my clinical trial. A paper was again published in Science journal yesterday, but here is a write up about it from National Cancer Institute.
http://1.usa.gov/1Sc2xRwOctober 27, 2015 at 12:42 am #78776iowagirlMember
Wow Melinda……that’s just the best news for you and for us to read. Thank you for doing what you’re doing for yourself, but also for all the others of us out here.
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