spapera
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Thank you very much Marion. We heard back from Dr. Harding that the PET scan indicates that the activity (FDG avidity) of the tumors in the liver and other sites has decreased while there has been increase in activity in the lung. Taken with the imaging findings on CT, he advised that this indicates a mixed response to treatment. The study radiologist felt that overall the disease was stable and the overall findings did not support progression of disease. Dr. Harding further advised that since she has been clinically well with stable cough and ascites and she has relatively chemo-insensitive disease, he thinks it would be reasonable to continue the current study at the present time. He also advised that if the cough worsened or she had any worsening pulmonary signs (shortness of breath, DOE, etc.), to contact MSK and that may mean we stop the study. Dr. Harding also recommend a short interval CT-chest at 4 weeks (to be discussed tomorrow in lieu of the PET findings) to make sure the disease is not continuing to grow.
Thanks again for all your well wishes!
After the initial set of scans yesterday, 8 weeks into the AG-120 trial, the doctors were largely encouraged. The sobering news is that we were told there is a tumor in the lungs that has grown by 8% but we were told that all other tumors are stable and some in the liver have even shrunk. Dr. Harding at MSK has strongly encouraged her to stay on the trial based on these results, which they are considering to be “stable disease” at this point. There is some good news here but the pessimistic view is that I’m not sure we have any other option. I hate that there is growth of a tumor and she has been coughing but the rest of the news seems very good (other than swollen belly which may be accedes plus swollen liver plus other side effects and her continued recovery from the compression fracture, which seems to be largely healed; and she may also have a slight rib fracture or two that the doctors did not find significant enough to even discuss until questioned about it) and she feels good and all other blood tests are showing good signs. We are still awaiting PET Scan results and she is going for another biopsy on Friday, which is part of the trial protocol. I suppose the only logical alternative at this point may be Keytruda but none of the doctors are advocating that at this point. I wanted to report the news in case this might help anyone and, of course, if anyone has any suggestions or advice, please do not hesitate to share.
Thanks and best to all!
Sincerely,
StevenAfter the initial set of scans yesterday, 8 weeks into the AG-120 trial, the doctors were largely encouraged. The sobering news is that we were told there is a tumor in the lungs that has grown by 8% but we were told that all other tumors are stable and some in the liver have even shrunk. Dr. Harding at MSK has strongly encouraged her to stay on the trial based on these results, which they are considering to be “stable disease” at this point. There is some good news here but the pessimistic take is that I’m not sure we have any other option. I hate that there is growth of a tumor and she has been coughing but the rest of the news seems very good (other than swollen belly which may be accedes plus swollen liver plus other side effects and her continued recovery from the compression fracture, which seems to be largely healed; and she may also have a slight rib fracture or two that the doctors did not find significant enough to even discuss until questioned about it) and she feels good and all other blood tests are showing good signs. We are still awaiting PET Scan results and she is going for another biopsy on Friday, which is part of the trial protocol. I suppose the only logical alternative at this point may be Keytruda but none of the doctors are advocating that at this point. I wanted to report the news in case this might help anyone and, of course, if anyone has any suggestions or advice, please do not hesitate to share.
Thanks and best to all!
Sincerely,
StevenHi Daisy, my mother has the idh1 mutation as well. I have written a few other posts on here about her and her current involvement in a trial at Sloan Kettering for AG-120 (Agios 120). This week is her 8th week on the trial, which is the first time they do all the checkpoint scans so we hope to know more at the end of this week as to how she’s doing on the trial. I will report back as soon as I have any solid information on her status. All the best!
Hello All, my mother Kathleen, about whom I have posted a number of times previously, has been participating in this trial for Agios 120 (AG-120) at MSK in NYC since the beginning of December. She had been on FOLFOX chemo since August 2015 after we discovered in July that the CC had returned (stage 4). She was reaching the end of her tolerance of FOLFOX, which was beating her up but also seeming stabilizing the cancer, although she suffered a spinal compression fracture from the metastasis near the spine that the doctors think had spread there before she started FOLFOX. Side effects have been minimal although she has significant swelling in her bellly along with a protruding mass which the doctors indicated to be a side effect of the AG-120. She will be scanned two weeks from tomorrow (Weds). I will keep everyone posted with any noteworthy results.
Very best to all,
StevenMy mother had a very good experience meeting with Dr. Milind Javle. It was a one time consultation but we came away feeling like we had b en seen by an expert.
Melinda, thank you again for taking the time to speak with me today! Your kindness and generosity absolutely amaze me. I feel truly honored to have had the chance to speak with you and am immensely grateful for your time and consideration.
Sincerely,
StevenMatt, thank you very much for sharing that and for your kind words. The information you provided is very helpful and it is clear that Lisa is in terrific hands with you. It sounds like we are exploring a lot of the same options and I will certainly provide any updates if we learn more about Keytruda and/or any other trials along the way that might prove helpful to you and the rest of this awesome community of fighters. The team at Memorial Sloan Kettering is in the process of conducting molecular testing of her blood and tissue samples, and I very much appreciate that advice and suggestion. I will be sure to make sure they are testing for the PL-D1 antibody as part of the testing.
I very much hope that Lisa’s current chemo regimen will prove effective! You and Lisa will be in my thoughts and prayers.
Thanks again!
-Steven
Thanks so much Julie. That is so wonderful that the surgery and adjuvant chemo has you now with no evidence of disease!!! I pray that it stays that way for you.
I will share with you a few more details about my mother’s situation in case it might be helpful for you to consider additional factors and continue to monitor things (as I am sure you are doing). Information is power and I subscribe to the school of thought that you can never have too much information.
The cholangiocarcinoma was originally isolated to her liver. Surgery was performed in May 2014, removing about 60% of her liver. The surgeon found no sign of further spread in her stomach and chest cavity (he felt around to see if other organs showed any signs during the operation). We found out recently that the margins were very tight. Apparently, you ideally want 1.5 to 2 cm radius at least for the margins outside the cancer tumors removed. Her margins were a rather small percentage of that. We were not informed of that at the time. The surgeon told us that he was confident they got it all.
Her oncologist recommended adjuvant chemo using primarily gemcitabine. It was one of two options offered by the oncologist, the other was more aggressive but since they told her they got it all and since her body was in a fragile state from the major surgery, it was determined that the slightly less aggressive option would be best. That may well have been the right decision even in hindsight because her body did have a hard time keeping up and maintaining a healthy white blood cell count. They had to adjust and reduce her dosages due to the low white blood cell count. The testing of the removed tumors showed it was stage 2 at the time of the operation.
They were originally going to do radiation treatment as well but then decided against it, presumably because they thought it would not be necessary and they were confident that they got it all.
The last chemo was early Jan 2015 and the scan that followed showed no return of cancer. All of her blood tests continued to show positive results and no sign of cancer return. Then, after her six month scan, we were hit with the terrible news that the cancer was back and back with a vengeance. Tumors have been observed in her live with significant metastasis in her lungs and even a possible tumor on or near the spine (with no sign of compression).
My original post describes just about everything that has transpired since that point but I would be happy to elaborate on any aspect if you think it might be helpful.
Again, I pray that you will continue to be free and clear of this terrible disease, and I think there is every reason to have confidence that you will, but just let me know if there is any other information I can provide at any point that might be helpful.
All the best,
StevenMelinda, it is so terrific to read all of the details about the continued success of your treatment with Dr. Rosenberg and the NIH team. About a month ago, a few weeks before I found this terrific website, I came across the May 8, 2014 NBC News article that was published about the success you have had with the Immunotherapy treatment while I was researching options for my mother, who I recently posted about in the Introductions and General Discussion topics of this forum. After a resection of about 60% of her liver and 6 months of adjuvant chemotherapy, we thought she was cancer free. Her scan at the end of the adjuvant therapy came back clear of cancer and her blood results were all coming back clean. They then scanned her again six months later and found the cancer had returned very aggressively. Not only additional tumors in her liver but metastasis to her lungs and even possibly on her spine.
When I saw the NBC News article, I was so pleased to learn about your terrific improvement and success with the trial.
I immediately got in touch with Dr. Rosenberg’s team and was working with Ellen to secure a spot in the trial for my mom. Everything was looking good for her to participate and they even sent a blood kit in the mail but once they saw her most recent scan, they said she would not be eligible, apparently due to the significant spread of the cancer. We were surprised and disappointed and we did not know of any better option than to take the recommendation of the oncologists at Morristown Memorial and the GI team at Memorial Sloan Kettering and get her started on FOLFOX. I followed up with the NIH team and asked if she might become eligible if the FOLFOX is successful in shrinking her tumor and got a curious response that basically boiled down to “unlikely, but anything is possible, although we are actually not having much luck with the trial other than for some melanoma patients.” I was surprised to hear that they were not considering the trial to be successful considering how terrific your treatment has been, but perhaps I misunderstood her response.
Mom is now two treatments in and it is wreaking some havoc on her body but we are holding out hope that it will be effective and, at the same time, trying to determine if there are any trials that might offer hope so we are ready to move in a different direction as quickly as possible if needed.
We are also waiting on molecular testing being conducted by MSK and holding out hope that the results present the chance for her to receive targeted treatment similar to the NIH immunotherapy treatment.
Please keep us updated on all of your successes. These positive results provide hope for all of us!
Thanks so much for all you are doing to share your story and assist others going through the same thing!
Best,
StevenHi Catherine, you very kindly responded to my original post about my mother. I am wondering if you think her condition is similar to where your mother was before she started the SIRT. My mother’s cancer has metastasized from the liver to the lungs and possibly the spine as well. None of her doctors have mentioned SIRT. Do you think that is something she should be considering?
Feel free to email me directly at snpapera@gmail.com if you would be so kind, and I will certainly try to monitor this topic board as well. You can also feel free to call me anytime at 908-914-7827 if you think anything I have looked into can be of help to you or your mother or otherwise want to “exchange notes.”
Thank you!
Many thanks Gavin. I have been having some issues with the site not seeming to load properly so did not realize it went through more than once. Thanks so much for removing those. I am trying to post again in another forum as suggested by Catherine but other than that, I certainly appreciate you removing the accidental duplicates!
Thanks again!
