Sleen wrote:We're back from follow-up #12. All good!
They've decided to schedule the next one for SIX MONTHS out. This is a first for me. We'll see if Dr. Rosenberg lets the order stand (he vetoed it last time it was suggested).
My clinic visit was one of the shortest ever, which is OK by me
Celine
pdp497 wrote:Hi Everyone,
I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.
pdp497 wrote:Hi Everyone,
I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.
DH2Sleen wrote:pdp497 wrote:Hi Everyone,
I have been very interested in this trial since I first heard of it and am looking into applying if my first line treatment fails, but I had a quick questions. I have been reading through the thread and there is a mention of MD Anderson as a possible site for a similar study. I am currently being treated there and live in Austin so it would be a lot more ideal than traveling across the country. Have there been any updates on the status of this I haven't seen mention of it in a while. Thanks for any information you can provide.
Here is a link to the study: https://clinicaltrials.gov/show/NCT02757391
They had an original planned start date of Aug 2016. It has been pushed back a couple of times and they updated it last week to Dec 2017. It might be best to ask your doctors if they think this will actually start up this year; if not, you would probably get started faster at NIH.
pdp497 wrote: After your wife's experience do you feel that the NIH teams expertise is worth the additional time and travel involved?
DAS43 wrote::D
Had my follow up at NIH today. The tumor has shrunk to 49.8% very happy and feel blessed. My next follow up will be in December.
DH2Sleen wrote:pdp497 wrote: After your wife's experience do you feel that the NIH teams expertise is worth the additional time and travel involved?
Three years ago, when we worked so hard to get into this trial, I would have said that it was our only option... either this trial succeeds or we have no hope. Now, I think there are real options for just about everyone. I still think the TIL trial at NIH is the ultimate solution, but other protocols are working for particular mutational configurations. And, some of the friends we have made participating in this trial have not been successful because it didn’t kill off 100% of their tumors.
But I still recommend this trial, at NIH, for a few reasons. 1) Nobody has more experience, 2) It costs nothing for the patient after the first visit (caregivers may get lodging, but maybe not), 3) NIH has done additional follow-up treatments whenever there was a chance it would get the patients disease-free, 4) No charges ever hit our insurance co-pays or deductibles, 5) If it doesn’t kill off 100% of the disease, you still have all other conventional therapies and most trials to turn to.
I think the key to success with this trial is to do it early. Ironically, you need to be fairly healthy (while mortally ill) to handle the treatment. But to answer your question, it was well worth it for us… life changing.
DH2Sleen wrote:DAS43 wrote::D
Had my follow up at NIH today. The tumor has shrunk to 49.8% very happy and feel blessed. My next follow up will be in December.
Awesome!!!!!! So you are officially a Partial Responder now?
pdp497 wrote:On the Clinical Trials website it seems to indicate you only need to have failed one first line treatment but I have seen in other places that you need to have failed on at least 2 treatments first, do you know what the actual criteria is? Also thanks for taking the time to respond going through this process is so difficult and being at the beginning of it it helps to have people willing to give advice and let you know about the process.
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