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October 30, 2014 at 7:41 pm #22223saderdomerParticipant
I am trying to get my own mind around all this and thought I would post my timeline and some info as it may give courage and hope to others. Others may get some ideas from how my treatment progressed.
Feb 2010 – initial diagnosis of lesion on right cheek. This was a non melanotic melanoma. Presented as a small pimple. I did not like the look of this pimple at all and somehow knew it was trouble. Just a few mm in diameter and did not meet any of the usual criteria – e.g. black or brown, irregular, etc. After waiting a week or so and this “pimple” did not go away I made an appointment with a dermatologist. This was a mistake as it took 3 weeks or so to see the dermatologist. He took a biopsy which was then sent to the pathologist. I could have seen my regular doctor in a couple of days and had the same thing done. Had I done so, I would have been a month ahead of the game. Anyway, almost 2 weeks after the biopsy, the dermatologist called me and said he needed to see me right away. I had kind of forgotten about the whole thing. Saw him the next day and got the word. He took a second biopsy that was more “rigorous” to more accurately stage the melanoma.
I made an immediate appointment a Mayo Clinic in Rochester MN. Got there a week later. All subsequent treatments occurred at Mayo.
March 2010 – the lesion was 1.8 mm thick. Had two surgeries. The first removed the sentinel node. Subsequent analysis post surgery showed a 0.5 mm lesion so I had a second surgery to remove the parotid gland and selected lymph nodes. No further lymph node involvement. Clean PET scan. I started on gm-csf – 2 week cycle of injections followed by 2 weeks “off.”
September 2011 – tumors found in left upper lung. A biopsy showed these were melanoma. Welcome to stage IV. Test showed this was wild melanoma – no BRAF mutation.A review of earlier scans showed some unidentifiable “disturbance” at the location of these tumors at least 6 months prior and maybe longer.
October 2011 – zapped tumors with fractionated radiation. Continue on gm-csf.
September 2012 – did clinical trial, very experimental. Did not work for me.
March 2013 – lung tumors seem generally dead. New tumors in spleen, splenic lymph nodes, adrenal gland. Started on ipi – 4 doses 3 weeks apart. Spleen tumors responded quite well. Adrenal tumor not so much. I did have an adrenal tumor in my right adrenal gland that came and went during all this. Then back on the gm-cfs after the ipi.
August 2013 – developed a growth in right cheek, which turned out to be melanoma. Surprise, surprise.
December 2013 – the spleen related tumors are back. Embolized my adrenal gland to try and kill that tumor.
January 2014 Another round of ipi (4 doses 3 weeks apart in combination with the gm-csf) which caused some reductions in some of the existing tumors. No new tumors. The adrenal tumor continues to show some growth.
June 2014 – two more doses of ip 3 weeks apart with gm-csf.
August 2014 – The tumor on my cheek explodes in a ball of puss. That is now gone. No new tumors but some existing tumors continue to grow. What to do next? Wait and see while taking the gm-csf? More ipi? Time to move on? I elected to move on to the Merck MK 3475 anti-pd1. Just had dose number 5 yesterday (2 mc/kg three weeks apart. No gm-csf as the combination MK-3475 with gm-csf has not been studied. )
Now – Well, I have gotten a spectacular result with some stuff going away entirely, particularly a large suspicious area in my spleen, and everything else shrinking by at least 50% including the troublesome tumor in my adrenal gland. Got a skin rash and some mild flu like symptoms from the MK.
Well, my outlook has changed dramatically, and I am still trying to grapple with this. Now I look at myself as having a future and a normal life span with an ability to still do and accomplish, and not as on the way out. While it is possible for things to go bad, it is probable that the effect of the MK will continue to progress in a very favorable manner perhaps to complete remission or at least minimal stable disease.
So there is hope even though things can look pretty grim at times. Do not give up.October 30, 2014 at 8:41 pm #65754MathewRParticipant
Excellent post, thanks for sharing your story.October 30, 2014 at 11:09 pm #65755HeatFireParticipant Thank you for sharing, I hope you will continue seeing reduction in tumors.October 30, 2014 at 11:21 pm #65756Catherine PooleKeymaster Yes, thanks for sharing. You will inspire many others!October 31, 2014 at 3:14 am #65757tamieParticipant Thank you for sharing. Unfortunatly we all live on trial and error but always need to be positive and get comfort fro mthe idea that there are many new trials, new development and more chances for us. TammieNovember 4, 2014 at 2:38 am #65758goldfidlerParticipant Thank you so much for this post. I really needed this tonight. Been a long couple weeks for me. I am so happy to hear about your great response to the PD1.
It is stories line this that gives us all hope. To see all you have been through. To see your strength. To see some success. And most of all, to see a future.
Thank you.November 4, 2014 at 12:05 pm #65759Catherine PooleKeymaster
Also, check out Jonathan’s update, he, too has had a wonderful response to this drug.
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