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December 19, 2012 at 6:02 pm #20861
Got my scan results. As my doctor said ‘basically everything looks ok’. Except that a lymph node they were unable to remove during surgery has grown. Ipi can take awhile to kick in, right?
Next steps – being referred to the immunotherapy team at Sloan to try and get started on the anti-pd1 trial in January. Will share more details about that trial once I get more info!
The last 2 trials I tried to get in to didn’t work out (meaning I didn’t get in). I was too far past the date with the Ipi trial in Jan 2011 since they had to biopsy lung nodules. Then after lung nodules confirmed melanoma in Mar ’11 I tried to get in to the braf trial. When they scanned again in Apr everything was gone and I couldn’t get in to the trial… and then within 6 months both were fda approved! Let’s see if a 3rd time of trying to get in a trial is the charm? One can dream, right?
Now if I could only get my anxiety under control! lol!
Happy Holidays Everyone!
ErinDecember 19, 2012 at 10:22 pm #58074Catherine PooleKeymaster
I’m betting on you getting into this trial for pD1 and I hope the IPI works with it to take care of that node. I hope your stomach issues are abating and you are feeling better. Thanks for keeping us informed and we appreciate your posts immensely!December 20, 2012 at 2:54 pm #58075
Thanks for the note! yes hoping to get in to the anti-pd1 trial. need to take care of that node. The scan report did state that: again containing central low attenuation consistent with necrosis? So maybe that’s a sign it’s slowly dying?? Fingers crossed?
Guess I have to remember that the best news is that everything else was still clear! It’s amazing that 2 years ago I had a dozen nodules in my lungs. 2 removed via surgery and then the rest all went away without treatment. Somehow I figured if I was going to get a reoccurance it would have been those pesky lung spots! But I’ll count my blessings!
And thanks – I feel SOOOO much better than I did. Man that was miserable! I’m lucky I have a flexible employer that allows me to stay home on days like that!
Happy holidays!December 20, 2012 at 4:14 pm #58076AnonymousGuest
You are a very courageous woman with an enduring spirit. What an example you are to others!
You have been blessed this Christmas with the very special gift of Hope (and a great medical team).
JeffDecember 20, 2012 at 4:45 pm #58077
Thanks so much for your note! I’d be lying if I said I haven’t had my dark days… but then I remind myself that those don’t get me anywhere, right? A few weeks ago was the toughest. I think between the intestine surgery, finishing ipi and waiting for results your mind gets the best of you sometimes?
I too hope you have a very blessed Christmas!
ErinDecember 20, 2012 at 11:27 pm #58078Shirley ZParticipant
Keeping my fingers crossed for the trial. You have really been through a lot, but still maintain a positive spirit.
Happy to hear you are feeling better. Just in time to enjoy the Christmas season.
Wishing you goof health and many blessings in the New Year.
Shirley ZDecember 21, 2012 at 1:47 am #58079msue5Participant
Good news Erin. Hope you have a stress free and fun holiday. I am going tomorrow for simulation scans for Cyberknife to new nodes in my thoracic area and also the surgical areas that were only partially resected in October. I am frustrated with how long everything takes. I probably won’t start the actual radiation for a few more weeks than maybe Ipi. Not sure yet. Christmas and a new granddaughter have helped distract me from those days we all have.
Mary SueDecember 21, 2012 at 3:01 pm #58080Catherine PooleKeymaster
Ah grandchildren are a wonderful distraction, I’m speaking from experience now. I hope things move smoothly for you all and the holidays are joyful.December 23, 2012 at 9:00 pm #58081Laurielala55Participant My husband is in the PD-1 at Sloan. He will be having his 4th infusion on January 3rd followed by the first CAT scan on the 17th. He has tolerated the treatment so far with few if any side effects. They happen to be a great team at Sloan. Good Luck to you!December 24, 2012 at 6:48 pm #58082 Shirley – Thanks! Maybe 3rd times the charm? Hope you have a fabulous Christmas. Back home in Minnesota for a few days. Hopefully no hurricanes or crazy weather this time!
Mary Sue – I hope the simulation scans for cyberknife went well. Sorry that things take so long. It’s crazy how sometimes things move SO fast and othertimes it feels like they aren’t moving fast enough. And in that time, all we have are our minds to think the worst things! Hang in there! I’m glad you have some distractions to keep your mind off things! I have a new niece also! I’ll be thinking of you!
Laurie – glad to hear that the treatment has been very tolerable so far! What doctors are you seeing there? I was surprised that the doctor they have me meeting with in a few weeks isn’t a melanoma specialist… but maybe that is just for the initial meeting? I suppose they do all work together there! It will be my first time on the 4th floor for appointments! They do have some great doctors there at sloan. I feel like we’re in pretty good hands! I’ll be thinking of you guys on the 17th! I’m in on the 8th there for the initial meeting. Thought it was odd my current doctor didn’t have me sign any papers to get started… he did for the last 2 trials I tried to get in to. But maybe things have changed there? Last time I tried to get in a trial it was Apr ’11.
Happy Holidays Everyone!December 27, 2012 at 6:35 pm #58083Laurielala55Participant
The team of doctors at Sloan include Jedd Wolchok, Neil Segal and Alexander Lesokhin. We have seen all three at this point and like all of them. Sounds like you are familiar with the 4th floor at the outpatient clinic. If not, don’t forget to pack some food. The wait can be long and if you are alone you will have a difficult time getting out to get some food. If you do get out go around the corner on Lex and get the soup at the Capital Cafe……worth the trip. Oh and try not to sit near the windows in the waiting area….cold! Really, I wish you the very best going forward. Take care and best wishes for the new year!December 28, 2012 at 5:45 pm #58084
Thanks for the info. My first appointment is with Dr Segal. Found it interesting that his background isn’t melanoma but I suppose he’s a good one for me to meet with first since it looks like his background is gastrointestinal (since I did have a small bowel tumor and still have a lymph node in that region growing). I have several friends who are patients of Dr Wolchok so I’ve heard great things.
I haven’t spent much time on the 4th floor. most of it has been on the 5th. I am WELL aware of the cold windows! I usually bring a wrap with me to help cover up if I get stuck sitting near there. And I am almost always by myself (my family lives 1,200+ miles away). So I typically pack snacks/lunch since days of treatment can be LONG! I find it interesting while I wait. My background is in industrial engineering and my first internship was at a hospital. I spent months working with the pharmacy and medical oncology units on ways to reduce patient wait times… who knows 12+ years later I’d be one of those patients waiting…
Thanks for the tip on Capital Cafe – haven’t checked that one out yet!
Hope you have a wonderful New Year!
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