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August 4, 2016 at 7:37 pm #69224marta010Participant
Thanks, Catherine. I’m doing ok – we have lots of help from our kids, friends and supportive family. Starting to worry about what is next if Keytruda doesn’t work but I try not to fret about the next crisis until it actually happens! No doubt, some completely unexpected side effect will pop up long before the need to find a new treatment does! Hope you’re doing ok with your own situation. Take care.August 6, 2016 at 10:47 pm #69225 Marta, I hope things go smoothly. Thanks for asking about my situation. We are on no meds because there are none that do anything. So going the exercise and TaiChi way. His Parkinsonian symptoms have worsened along with the dementia. It really is the disease from hell because he can’t take some of the promising drugs for Parkinsons because the Lewy Body Disease makes him hypersensitive. It is sad and I just know it is what it is. We are enlisting palliative medicine which I highly recommend in this type of situation.
So bad things happen to good, healthy people for no apparent reason! As most of you know well.August 7, 2016 at 6:47 pm #69226
I’m so sorry to hear this, Catherine. Thank you for all you do in the midst of your own crisis.
GwenAugust 16, 2016 at 5:31 pm #69227
Lung & Abdomen progression has caused me to be washed out of my Glemb treatment(s). As the Braf Mek combo trials at DF are not recruiting right now; in order to attempt to keep things in check, I signed releases this morning to go onto ERK (BVD523) a Biomed Valley phase 1 experimental trial. First doses tentatively scheduled for very early September.
Overall, I feel pretty good physically under the circumstances.August 16, 2016 at 6:13 pm #69228
Stan, I seriously considered the ERK trial last year at MDA. It sounds like they’ve gotten some good results in melanoma patients. Best of luck with the trial. Keep in mind that you could also consider a second run on BRAF-MEK, particularly since you’ve been off of it for awhile. Like you, I’d for the trial first, however.August 16, 2016 at 7:02 pm #69229 Sorry about the glemb trial, Stan. I recently got kicked off the ERK trial at DF but did get three cycles in with some benefit. Those big adrenal/abdominal tumors of mine keep working around treatments. Anyway, was hoping to go to another trial but had enough progression to move directly to the ipi/nivo combo. I wanted to let you know though, that I tolerated the ERK drugs well with minor side effects. Good luck to you. I hope it does the trick.
GwenAugust 16, 2016 at 8:37 pm #69230
Stan, there is also a potentially new BRAF/MEk coming along that might be an option, we’ll see how fast it moves to market but it will be announced in October probably. (Array pharma) It will have less side effects than the others and is reported to be promising by my scientific folks. Glad you are feeling well, since that is the number one prognostic indicator in my book! But I’m waiting to hear how Matthew R is doing? What’s going on in your therapy Matt?August 17, 2016 at 4:42 pm #69231 Thanks Catherine. I’m presently stable 7 months into ipi-nivo (started in January). I was able to tolerate 3 combined infusions and have been on nivo since. Manageable side effects. I’m very grateful to be where I’m at. I don’t assume that I have this thing beat and continue to monitor for plan Bs (having already exhausted several plan Bs).August 17, 2016 at 6:45 pm #69232 Gwen, Dr. Buchbinder told me that there have only been 4-5 participants in ERK with two washing out.
Catherine, the two current Braf/Mek combo trials have a hold on recruiting at DF. I will definitely keep my eyes open for the Array Pharma trial.
Matthew, I wish my body chemistry would react well to the immunotherapy regimes. But, alas, they are not for me. Some Braf/Mek Combo treatment is likely in my future.
I have never been in a Phase 1 trial so I will have to go into training for some 12 hr. Days at the hospital.August 17, 2016 at 8:02 pm #69233
Stan, I see Dr. Buchbinder too (love her name!) as part of Hodi’s team and clinical trials and have been really happy with her. I was bummed to be one of the wash-outs but still feel it was a worthwhile trial. I’m not familiar with the new Mek/Braf combo trials so will have to keep an eye out for them. The 12-hour days (two, I believe) weren’t so bad either — got my own infusion room for the day and since it’s an oral med, could take short walks when I wanted to. The heated chairs are pretty nice too.August 17, 2016 at 8:17 pm #69234 I have been seeing Dr Hodi since 2008 with a 5 year respite until 2013. He referred me over to Dr. B. As she is in charge of all of the Phase 1 trials. Definitely lucky to have 2 such fine teams.August 19, 2016 at 1:57 pm #69235 It absolutely is imperative to get to a specialist with melanoma. It was night and day for me and my treatment. I hope things keep moving along in our discoveries of therapies!~ Trial participation really helps with this movement. Take good care STan and let us know how you are doing.August 25, 2016 at 4:10 pm #69236HeidiZParticipant Hi Everyone,
Completed 4 doses of ipp/nivo and also received 3 doses of Keytruda so far. Mets on liver, spleen and over 12 lymph nodes in neck with melanoma. Also some areas of swelling on scalp which oncologists assume are melanoma since it’s near both scars.
Got my results back for my neck and torso scans this week and I have to admit I’m disappointed there wasn’t any decrease noted, only stable this time. Last scans showed some decrease and some increase.
I know what stable means, no new growth which is great but how does the Oncologist view what exactly is happening when scans are stable and why isn’t decrease seen in some patients.
Does it mean the T-Cells are just able to keep melanoma under control and not actually able to destroy them because there are so many? Feeling let down
HeidiAugust 26, 2016 at 11:52 am #69237
Heidi, glad to hear that you’re doing well. Not easy, but I try to take the view that if I’m not cured, stable is the place to be. Have you had a PET? If not, you might request one at some point. If the PET shows no uptake, then it may be possible that the lesions showing up on the CT are scar tissue, dead tumor, etc. The radiology reports won’t actually state this, but you can discuss with your onc.August 26, 2016 at 12:26 pm #69238marta010Participant Hi Heidi – I know exactly how you feel. My husband just completed his 6th infusion of Keytruda and had a PET/CT which showed stability in his existing tumors and no new activity. While his doc is very encouraged, we felt a bit of a let down. Would have liked to have seen some decrease but understand that positive results can take a long time to show. Stable is a good place to be…..but not as nice as a decrease. Keep up the faith and hang in there.
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