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January 5, 2013 at 4:33 pm #20908
I searched the forum and internet before posting but couldn’t find this information. We’re trying to get as much info as we can before our appt. at UCLA Wednesday to see if Amy qualifies for the PD1 and BRAF/MEK trials.
On average, if a person is a responder, about how long before they start seeing results with the anti PD1 and BRAF/MEK treatments? For example, I know it can take a couple months to show improvement on IPI but just days on Zelboraf alone. Is there an average time for the two I mentioned above?
Also, I have learned that the “average” duration of success is about 11 months for the BRAF/MEK drug until progression begins again, but is there an average duration for PD1?
Thank you all so much!
SylviaJanuary 5, 2013 at 5:29 pm #58375
Anti-PD1 is such a new therapy that this is a question we have yet to answer. As a particepant in the BMS anti-PD1/ peptide, NED arm, of their trial at Moffitt I remain NED after more than two years when progression is expected in my cohort within 6-8 months. I realize this is not really an answer to your question, but the best information I have been able to find, and report from my study, regarding anti-PD1 is on my blog: chaoticallypreciselifeloveandmelanoma. If you are interested…the posts on Dec 13 and 15, November 25 (a report of a discussion by Weber and Sznol re ipi and anti-PD1), and those in September may be of the most value to you. Best of luck in your search for the best options.January 5, 2013 at 7:44 pm #58376 Celeste,
That is great news about your response! I’m really happy for you.
How long before you started to respond to the PD1?
SylviaJanuary 5, 2013 at 8:34 pm #58377
As I noted….I am in the NED arm…meaning after my lung tumor and tonsilar melanoma were surgically removed and my brain tumor zapped with stereotactic radiation…and found stable for the time required by the trial…I was admitted into the No Evidence of Disease arm of this trial. Therefore, the “time” before anti-PD1 acted…or in fact…if at all…remains unclear. I was NED when I started and I am NED now. There is, however, a sister arm to this study who were admitted with nonresectable disease. Of these, about 30% or better have experienced shrinkage or stability of their tumors….time to response, however, remains somewhat hazy….though most papers and researchers liken it to ipi, with a somewhat better response rate and slightly decreased side effect profile.January 5, 2013 at 8:44 pm #58378 On thinking more about your question…I think the closest thing you are going to get to an answer is in the June 2, 2012 New England Journal of Medicine article… Safety, Activity, and Immune Correlates of Anti-PD1 Antibody in Cancer . Written by Hodi, Sznol, McDermott, Topalin…et al. I wrote about it on my blog on June 10 and May 20. However, it is definitely something to ask your onc given your situation and the options you have. Best wishes. CJanuary 6, 2013 at 12:39 am #58379jamesaParticipant Hi Sylvia,
Anti-pd1 works with a person’s immune system like IPI so it will takes some time to see a response. This drug is so new, I do not think that anyone knows how long it takes to see a response. Also, everyone’s immune systen is different so there is no way of knowing how long it will take Amy to see if she is a “responder” to the drug. Pati was NOT a responder & she was able to know the drug was not working for her after taking X number of infusions. You can search Pati’s posts or maybe Catherine knows how many infusions Pati took & then knew the drug was not woring for her.
With regards to Braf/MEK drug, I think that it works quicker than IPI & PD1, as Catherine had mention in a previoust post. Catherine also recommended that since Amy is progressing, that BRAF MEK combo might give Amy a quicker response.
Here is an article:ASCO: Melanoma Patients Respond to Combo BRAF, MEK Inhibitors
with Dr. Jeffrey R. Infante. This article gives response % , etc. I think that Dr. Infante also did a webinar about “DUAL THERAPIES”on Oct 2012. Catherine can verify this info for you. Follow the blue link on this website:
Also, here are some links of people on GSK BRAF/MEK:
I hope all goes well for you at UCLA. Dr.Ribas is very experience with BRAF MEK drugs so I would consider his recommendation for Amy’s treatment very seriously. Whatever he recommends, he has the experience to back it up!
Please keep us posted on your decision.
JamesJanuary 6, 2013 at 5:38 am #58380
Thank you, thank you! I appreciate all the feedback and will let you know how our Wednesday appt. goes! All that was shared is very helpful.
SylviaJanuary 6, 2013 at 5:03 pm #58381
I am sure you will discuss this at lenght with Dr Ribas (who is just the best!), BRAF/MEK acts fast but Dr Ribas will share with you his experience with anti-PD1 and with some patients he sees responses quite quickly (at week 4 for instance); for me it was clear that i was not responding after the second infusion (around week 9) but this time my LDH had increased to X4 normal and the palpable tumors under arm were growing visibly. Having restarted vemura 18 days ago I can tell you that with BRAFi you see the tumors respond VERY quickly even after 5 days! So maybe something that is worth discussing is to get the tumors down through the MEK BRAF combo and THEN try to access anti-PD1 when she PD, I am sure her state needs to be evaluated to see what makes sense, both great options I am hearing the anti-PD1 works in 40 to 50% of cases…
Best of luck
PatiJanuary 6, 2013 at 9:35 pm #58382jamesaParticipant
That is wonderful news that vemura is working for you again. How are you feeling; any side effects yet.
What are your plans? Will you be able to get Braf & Mek together? Sylvia mentioned that Dr. Ribas has some Braf/Mek trials perhaps you could qualify for one of them.
I wish you the BEST in the New Year
JamesJanuary 7, 2013 at 12:04 pm #58383lak1Participant
It is wonderful that you are responding again. In line with the previous post have you considered adding in Ippi whilst your tumours are actively shrinking and dieing- wondered if an abscol effect could happen.
LesleyJanuary 7, 2013 at 2:38 pm #58384rochelleParticipant
my response is only based on my experience and I don’t think even the “experts” know for sure…I had a round of ipi and five high dose rounds of radiation that I completed in July of 2011. Subsequent pet scans and MRI’s showed no new lesions and diminishment of existing lesions. Since diagnoses, I have never been NED but stable for the better part of four years. I can tell you in the past 18 months or so, I have had what my team calls ipi flares. An existing lesion will flare, get red and very painful, then within a couple of weeks time, the lesion disappears (all my lesions are sub-q’s).
Research data shows that ipi responders do well with maintenance doses…so I have recently had another five rounds of high dose radiation and one infusion of ipi…(to which my liver wasn’t happy) and after a course of steroids it’s much happier now
but again…I continue to have flares that virtually disappear. Personally, I am convinced that the combination of radiation and Yervoy gets you more bang for your buck and I believe there are some studies currently being conducted to to prove this theory.
As far as the time frame, my oncologist says “they” really don’t know if the immune system is ever really shut off again after being treated with immunotherapy. And if it does, there is really no telling at what point that happens…hence the maintenance treatment to be sure the immune system stays in high gear….I say, just give me whatever it takes..January 7, 2013 at 9:02 pm #58385
I am waiting to see if I can add MEKi one way or another, GSK refused my CU request for their combination twice…my next advocacy project is all about COMPASSION and the use of this word right in the context of cancer…so stay tuned for that. I am cooking up something on this…
If I want to access ROCHE MEKi I might have to go to east coast to get into BRIM 7 (get combination that way) or wait until Novartis phase 1 open up closer to home maybe at IGR (Paris). I decided not to join this in Barcelona though I could have because the requirements are to be around for the first 3 weeks pretty much, in and out testing etc…I am not going to enter traveling any more, my kids and my family have had enough of that, we cannot afford it emotionally nor financially so…that is my choice.
For now happy to say the scan today shows tumors shrinking again with half dose vemura which is the dose I can stand, my LDH down from over 2000 to 600. I am getting the palpable tumors out (now smaller) through surgery next week then will do some radiotherapy to the axilla area so here is hoping for some combination of all (including just the miracle of our own immune system and boundless love I am surrounded by), for now I am well and happy
and had a great break,
PatiJanuary 7, 2013 at 10:31 pm #58386JonathanParticipant
Hi Sylvia, Pati, Leslie, Celeste, James, Martha, and everyone else – it’s good to “hear” from you all!
This all is a good discussion (as always). I think it’s pretty clear you can start to look for anti-PD1 responses by 8 weeks or even a little sooner, so it tends to be quicker than Ipi.
I haven’t been on the board much lately – been very tired with the combo therapy I’m on (Ipi plus Pegylated interferon). Interferon is such a bear – makes me sleep 14 – 16 hours a day. Anyway, my 3rd Ipi infusion is scheduled next week, and scans in February.
Here’s to everyone’s health this coming year.
JonathanJanuary 8, 2013 at 7:58 am #58387GillyParticipant
Hi -Happy New Year everyone – Nice to hear from the core cohort members again ! Glad that you are sounding positive Pati, and that your LDH is back down and fingers crossed that you can get the compassion word understood for the Anti pd1 locally – we only have 4 hours travelling for Zelboraf trial but j’en ai marre deja ! Sorry that Jonathan is suffering such fatigue on the Peg Interferon/Ipi but I hope it does some good. I hope you get onto the Braf/Mek or Anti Pd that you want ,Sylvia , good luck on wednesday. I hope Celeste, you keep going NED indefinitely.All the best this year to all warriors.January 8, 2013 at 5:27 pm #58388 so good to hear from you all Jonathan what a ****, when in feb ??? hopefully you are getting some beauty out of the sleep I am sure it must be hard. Gilly I know, mois aussi j’en ai marre, the whole travelling thing is a killer…
I heard today the “might” be possibility of TIL slot in a pilot with Haanen in Amsterdam, I might hope over to discuss as I have a couple of nodes I was thinking of taking out so the “harvesting” could become of use for this…good vibes to all,
Hope you all
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