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July 2, 2013 at 11:48 pm #60640pastwinnerParticipant
Just wanted you to know that I am thinking of you and hoping all is going well with the new trial. Yesterday, I went back to read some of my old posts and found your very helpful and hopeful responses. Those were 2 1/2 years ago, and while many of us are still here, many are not. (Thinking particularly of wonderful Pati) You and Catherine are gifts to the rest of us. Please know how much you are appreciated. I am holding you in the light.
LearJuly 16, 2013 at 7:22 pm #60641
Just an update on this phase I trial I’m on. I am getting my 2nd infusion as i write (planning to doze off with the benadryl and steroids shortly). See an earlier post on this tread for more details on its ADC description – this is just about my response, and about prospective trial seats.
All good and hopeful news so far, and it’s only been 3 weeks on the trial.
No o bvious side-effects, and none expected (maybe very slightly tired, perhaps it is also contri butin g to an episode of diarrhea, treated with rice diet and immodium – could just be my usual state).
I had a ear l y PET scan at 10 days, and it showed clear “improvement” in the immortal words of the report – the s mall tumors in my small intestine are “resolved”, as are some small lung tumors, while others, plus my big tumor in my armpit (that they love – easily biopsied – twice already) are showing less activity alread y. So as far as they can tell, the signs are all very good. As another indicator, my anemia is already improving (it was due to multiple small tumors causing bleeding in my small intestine). So this m ay be the drug effect already, or the iron sulphate, I’ve been taking, or the steroids I took as pre meds last night. So feeling better and very hopeful mind set is a great place to be.
As for available seats, Dr. Infante says there will be a few more here at Sarah Cannon in the next couple of months,most likely at the highest dosage, which is what I’m on. He also said because the trial is so promising, they are going to expand sites (currently only at The Angeles Clinic and here in Nashville) in the near future, meaning in 3 months or so. So keep alert as to these if you need a systemic treatment – one way or another, it will be posted on MIF.
Other things – I’m very pleased about the anticipated expansion, since until then I’ll be having to fly down here on a weekly basis for one day beginning next week, and I want that to end a.s.a.p. The protocol this first 3 week cycle has been busy with tests (blood work, physicals, scans, etc) so we had to stay here at the Hope Lodge (free to cancer patients), If you’re thinking about this and turned off by the frequent travel, the expansion to new sites may well make it easier for you to make a positive decision. I do gather the response rate is “very high”, which, coupled with the lack of serious side effects, makes this a most promising development. I’m not the only one responding, and i’m guessing, but it “feels” as though the response rate (on only 50 humans) is higher than anti-PD1, and may be somewhere around 50% – but don’t quote me on that!
JonathanJuly 16, 2013 at 8:11 pm #60642cindy5Participant
Even though melanoma warriors are warned to be wary of the sun, this ray of hope and promise feels good upon our heads!!!July 16, 2013 at 9:42 pm #60643AnonymousGuest Well said Cindy!!
And congrats Jonathan!!!!!
And thanks for taking the plunge and giving everybody here the live report.
Looks major promising indeed.
JeffJuly 17, 2013 at 9:16 am #60644buffcodyParticipant
How wonderful for you!! How wonderful as a possible new future opportunity for those among us who are looking for new developments that provide hope. Thank you for continuing to share your experiences with us. And fervent desires that this continues in such a positive direction for you.
FrankJuly 18, 2013 at 1:59 am #60645
Well, I have to say right now I’m really flying with hope and good feelings, and I do hope others can benefit from this new treatment as well – and of course, I mourn those, like our recently departed soldier Pati, who could possibly have benefitted as well. I hope my own readings of this drug are not too premature. That’ we’ll see in a few weeks, but all the signs are positive. Perhaps the most telling was that Dr. Infante gave my wife Francoise a hug at the end of our conference yesterday – that hadn’t happened before.
Another hopeful straw in the wind is the stock prices of the companies doing the ADC development – the one that owns rights to this particular drug, Seattle Genetics, has doubled in price during the last 12 months. Of course, they have a bunch of others in their pipeline, but still, the approach is clearly very appealing, and one has now been FDA approved (for breast cancer).
JonathanJuly 18, 2013 at 4:37 am #60646lak1Participant
thanks so much. I am at a difficult stage minimal disease burden 4mm tumour lung but no options.
So this trial is very interesting to me. Especially as you report responses in ocular melanoma.
I m having next scans in Aug and will see about surgery but if inoperable will contact Nashville as well.
I would have to stay in Nashville the whole 6 weeks.
Really I would like anti pd1 but I had inflixinib at the end of May for a mild to moderate ipilimumab induced colitis still reducing steroids so hands tied at the moment other than surgery. But OM is excluded and nobody is going to be keen in that I had inflixinib on ipi .
Jonathan could you email the contact details for this trial.
LesleyJuly 24, 2013 at 11:37 pm #60647
This is an update (perhaps weekly) on this phase I trial I’m on – I was in Nashville for a 1 hour visit/blood test/conference with a nurse practitioner.
What I learned today that I didn’t know before. The notion that there are simply no side-effects is incorrect. I am apparently on the highest dosage tried to date, and they “like” what I’m reporting. That is, some tiredness and diarrhea during the week following each infusion, which gets better during weeks 2 and 3. Also, I’m experiencing significant hair loss, which they say some others have also reported. Fortunately, my wife says better me with no hair than no me, so that’s not a major concern…
Also, I’m becoming more convinced that while they don’t like to talk numbers at this very early point, they’re extremely pleased with the number and nature of the responses they’re seeing, and no one blanches when I suggest the response rate is around 50%.
Everyone realizes it’s a terrible burden to have to report to Nashville weekly, sometimes for apparently simple blood draws and blood pressure check-ups (my session lasted an hour today). Apparently it’s Genentech plus the FDA making stringent requirements on standardization. The main hope is for an expansion of the trial to other sites, planned for “the next 3 months.” We can all hope.
Next week is another pet scan, which will be important. My anemia is clearly no longer a problem, with my hemoglobin now stable or rising over the past month – excellent news.
More next week.
JonathanAugust 1, 2013 at 10:08 pm #60648
Hi, hope this weekly update will be informative to some – it’s becoming a personal diary of sorts.
This ADC drug continues to do great things for me, apparently. The latest PET scan 2 days ago showed continued shrinkage or disappearance of tumor activity, with one or two small ones “only” showing stability. We will know more next week when they do a CT scan (I must be glowing in the dark by now with so many scans). I’m also feeling better, with no transfusions for the past 2 months (since this drug regimen started). They’re now also giving me iron infusions, since the oral iron sulfate didn’t seem to get absorbed.
Side-effects – quite manageable, but not entirely non-existent. The tiredness seems to be dissipating (perhaps that’s the anemia going away); the diarrhea seems to occur a day or two after each infusion, but gets better over the 3 week interval; but a new thing has appeared – leg muscle tiredness or ache, especially at bedtime. I reported this to the nurse practitioner, and she said she’d seen that in this trial, and to drink tonic water (!). So I did, and it immediately disappeared.
Have to add some gin next time….
In sum, this is the most effective drug (and with the least side-effects) I’ve been on in my melanoma history, and I continue to have the clear impression that they just love it at Sarah Cannon Research Institute, so I’m hardly alone. As soon as I hear about where it may be opening up elsewhere, I’ll pass it on, if it isn’t posted beforehand. I’m thankful I am on this drug, even if it means a great deal of tiring travel back and forth on a weekly basis.
Best to all,
P.S. After reading JamesA’s post about the 2015 likely Merck marketing of anti-PD1, I do think it’s very worth-while keeping alert about new trial openings on this drug (as yet with no name).August 2, 2013 at 12:19 am #60649tbeauParticipant
Your weekly updates are very informative and hopeful. It is wonderful to hear your updates and hear positive information. I think it is great that you continue to post your story and give everyone here hope. Thank you.August 2, 2013 at 2:53 am #60650gostanParticipant
Jonathan. I sincerely hope that your responses are all positive. And, certainly keep us all up to date. And let’s hope that with positive results, that this will open up at other cancer centers.August 2, 2013 at 5:08 pm #60651BNP68Participant Johnathan,
Do you happen to know the biopsy requirements of the trial. I had a resection a couple months ago which at the time we thought I was NED. I now have two tumors and I’m attempting to enroll in the ipi/nivo trial but unfortunately the trial requires a biopsy of the present disease and my tumors are located where this may not be possible. If you aren’t familiar with the requirements for the biopsy could you email me a poc for the trial that could answer that question for me?
BrianAugust 2, 2013 at 6:27 pm #60652
Of course, they love to biopsy tumors if they’re accessible. They liked the fact that I’ve got one in my armpit, and they’ve biopsied it twice now – very easy, but now that it’s shrunk so much, they’ll have a hard time if they want to do it again. There is, however, NO requirement for a biopsiable tumor to get in the trial – I’m certain of that. The contact number at Sarah Cannon is (615) 440-8665. Hopefully that will be enough to get you started. They’ll want materials for a referral, which may be more than you’re ready to commit to, but I’d imagine there would be a way to talk to someone about their requirements from that number. The main issue besides is whether they’ve got available seats on this trial, and if so, when one would be available. There is no one contact to talk to about this trial – they sort of switch around. All they do is clinical trials, and they say they’ve got around 300 currently running…
Hope that helps, and I hope you can get on it – BRAF status is not an issue, nor is prior use of immunotherapies or any other prior treatment, since it’s a (targeted) chemotherapy. As I recall, brain mets are an exception, and they want things like hemoglobin levels to be at 9.0 or above, etc.
JonathanAugust 3, 2013 at 6:44 pm #60653BNP68Participant
Thanks so much Jonathan. I’m looking in to the availability and will post what I find out in case others are interested. I still think I will shoot for the IPI/NIVO trial if I can get the biopsy thing worked out, especially knowing that IPI/NIVO wouldn’t disqualify me for the ADC trial later. Right now I’m just trying to lay down a contingency plan in case the IPI/NIVO trial doesn’t work out.
BrianAugust 3, 2013 at 9:39 pm #60654
Sounds like a good plan, but of course, check everything out yourself. I think if I were you, I’d do exactly the same. I wanted to get on anti-PD1 for years, but for one reason or another, kept being disqualified, or got on a bum version (which disqualified me from one of the good versions). This drug, DEDN65260 (or whatever) is going to take a number of years in trials, so it will be around for a while, and hopefully available at a more convenient location for you if required.
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