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January 17, 2013 at 10:09 pm #20942
I’m getting ready to start PD1 on Monday. Had biopsy and new scans taken yesterday (still haven’t heard how much my scans have changed in the last 4 weeks…).
Curious to hear from folks that took Ipi and failed and then took pd1? What type of results did you see? I know I’ve read a number of different things…January 17, 2013 at 10:14 pm #58587Catherine PooleKeymaster
I do know one patient that I can say failed both therapies, had a GI blockage removed and has remained NED since! So, failure may be viewed in different ways and PD1 tends to stay in your system for a long time. I wish you well on this and please let us know how things are going for you Erin.January 17, 2013 at 10:19 pm #58588 I’m not expecting to fail another treatment Just want to make sure I’m keeping back plans in place!
I’ll keep you guys posted! A bit bruised today from a) the biopsy of the lymph node near my small intestine and b) bad nurses! I got stuck 4 times… ouch! hopefully my left hand heals some before treatment and blood draws on Monday! Stinks to have arm restrictions!January 18, 2013 at 3:44 pm #58589
FYI – found out the results of my scan today!! Since Dec 18th the tumor (lymph node) has shrunk! From 3.7 cm to 2.8 cm! and still nothing new! The best news is that they are still going to allow me in the pd1 clinical trial! First dose on Monday!January 18, 2013 at 3:57 pm #58590AnonymousGuest Fantastic Erin! Stop back in Monday after the infusion and tell us about it.
JeffJanuary 19, 2013 at 1:39 am #58591Laurielala55Participant
My husband just completed his first cycle of PD-1 a couple of weeks ago. He too is a patient at Sloan. He had his first CT scan today and the doctor called with good news. The tumors in his spleen have been reduced and the tumor in his liver is also shrinking. Having “failed” ipi this is the best news in a long time! He does have lesions on his spine and is having some pain in the mid/upper back. Another MRI is in order to see what if any changes have taken place. One step at a time. On to round two! Wishing you much luck with your first treatment on Monday. Hope to be hearing your good news in the near future!January 19, 2013 at 3:06 am #58592GabsoundParticipant Hi Erin,
I’ve only had 2 doses of PD1. Prior to this I did 2 rounds of IPI. First round had significant reduction in disease in my bones and my liver. Second round showed a mixed response. I went to Angeles clinic to see about Anti PD1 trial. They did a CT scan which showed a new tumor and a bone scan which still shows activity in spine, pelvis and a few other areas. So, I qualified for the trial.
Prior to getting my second dose of PD1, Dr Hamid came in to tell me my labs were off a bit and my LDH was 880. I asked him if this could be due to the treatment and he said not likely. This is the highest my LDH has ever been. I won’t get scans for 9 weeks if we stick to the schedule but unfortunately, I have to say right now I’m not feeling that optimistic.
I’m hoping that you have a good response. Dr Hamid said they are seeing good response on both the low dose as well as the high dose (Merk trial). Response rates of over 40 percent.
Best of luck to you.
JulieJanuary 20, 2013 at 6:29 pm #58593
Jeff – I’ll let you know how things go!
Julie / Laurie – thanks for the info! I’m hoping it will help knock away what’s left!January 21, 2013 at 3:30 pm #58594MothraeveParticipant
I have been an observer but am new to posting. I thought I would share my experiences with my husband. My husband was diagnosed in August with melanoma nodes all over his lung. It proceeded to spread to his spleen, liver, rib and his shoulder in the bone. The bone pain was the worst and was on major pain medication. He went through the whole treatment of IPI with no positive results but no side effects. He had a splenectomy in September due to a secondary condition and had to recover from that major surgery. Three days after coming home from the hospital from that operation, he was fortunately admitted into a new PD trial with prior IPI use. My husband at that point was curled up in a bed in tremendous pain and was in terrible shape. He has now had 3 PD-1 treatments and is feeling soooo much better. He has very little shoulder pain and has finally been able to leave the bed and go on short outings with me. He will be receiving his 4th dose in two weeks as well as a scan but I am pretty hopeful we will see a change in his horrible previous pet scan. All I know is that he has cut his pain meds in half and is smiling so that is always a good sign. Hope others have similar resultsJanuary 21, 2013 at 6:38 pm #58595Catherine PooleKeymaster
Thank you for sharing the good news about your husband! I hope he continues to respond to the PD1.January 21, 2013 at 11:05 pm #58596 First dose of pd1 done! Feeling ok but exhausted! Always a long day at Sloan. Here’s hoping it does the trick!January 22, 2013 at 12:42 am #58597Shirley ZParticipant Hi Erin,
Glad to hear you are finished with the first dose. Get some rest and take good care of yourself.
Keeping my fingers crossed for you.
Shirley ZJanuary 22, 2013 at 4:15 am #58598AnonymousGuest
This is no trite comment Erin when I say I’m praying for all the best and grace God may give you for your journey with this new path, this new road.
All the best.
JeffJanuary 22, 2013 at 6:00 pm #58599
Shirley / Jeff –
Thanks so much for the note! so far so good. Didn’t sleep so great last night and had horrible acid reflux but that may have had something to do with what I ate and eating so late!
But other than that feeling good. Wish I could take an afternoon nap but not sure work would approve of that! hehe!
ErinJanuary 23, 2013 at 9:35 pm #58600patiParticipant
Hi, I did anti-PD1 (MERCK) after IPI and really the only issue was fatigue, fatigue, fatigue…so yes if you are working which I was it can be tricky. Hope you get good news soon,
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