Sunday, April 30, 2017
We have scheduled out the next three months, the standard cycle of waiting in the mucosal melanoma world. I will continue to have biweekly infusions of nivolumab with an eye for new side effects. At the end of July, and as it happens, on my 33rd birthday, I will have a full body PET scan, only my second ever. The PET scan can pick up even rather small activity but is much more toxic (and expensive) and therefore used less frequently. We have tentatively discussed that if the PET scan is free of any concerning signs, it might be time to try taking me off of treatment and switch to a watch and wait treatment plan (meaning CT/MRI scans every three months). I hope that is a worry that I get to enjoy this year!
Love to you all.
Wednesday, March 1, 2017
Friday, January 27, 2017
Sunday, January 22, 2017
The battle is over. My body is waking back up after being put to sleep, the pain that followed the violence is subsiding and my wounds are softening and healing. As I get back to my normal diet and activities and return to myself I can now afford the mental energy to reflect back on what has happened here and reach back out to all of you.
I went into surgery on Wednesday in the midst of a heavy storm. The burden of the clouds was hastily released onto the city and the unprepared roadways swelled with the rain water. We played cards to still our nerves as we waited for all the members of my surgical warrior team to make their way through the panicked city and find themselves ready to do battle. At this point all we knew was that the surgeons would place a scope through my navel and look around instead to see the extent of the cancer in my abdomen. If (and this is a very big if) there wasn't extensive disease they would move forward with a surgery to remove some of the tumor for TIL, a cutting edge new therapy available here at MDACC. They had specialists in place for any number of scenarios and planned to remove as much as they could. I was told it could take up to 6 hours. Once everyone had arrived I was dressed for the occasion and tagged on all four limbs then rolled into the room. I smiled up at the nurses as the fluids reached my veins. Then I was asleep.
I've had surgery and medical procedures that involve general anesthesia before and I was always struck by the distinct feeling of waking up in a complete state of disorientation. Coming out of a dreamless state and waiting for my neurons to fire and remind me that I am a person and that I was once alive and that I still am and then the other details find their way to me one by one. This time was different. I had a dream. I don't remember the dream but I remember waking up smiling and fully aware of who I was. The first thing I looked for as I pulled open my heavy eye lids was to grab the image of the clock on the wall as I rolled away. 3:38. Too long to have just been a scope and close up. They did the surgery. I smiled again and let my eyes comfortably close again, sure I could handle any news that might come at this point. I recall a doctor placing a hand on my knee. I opened my eyes to hear him saying "...went very well, you did great..." I had many questions but only the will to nod my head and smile. I kept my eyes mostly closed but didn't attain sleep again, instead contenting myself with attending to the murmurs of the nurses around me and piecing together the snippets of information about me that they shared with one another.
I was in recovery for a few hours before they let my family come back and see me. I remember inquiring about the burning pain in my arm and requesting that someone bend it for me as I couldn't move my limbs of my own accord. The obliging nurses were there and immediately responded to my every need. I was nauseated, as expected. A nurse shoved an alcohol soaked pad under my nose, which I violently rejected (no, worse, worse!). I then noticed and inspected the various painful and sore spots - surveying my battle wounds. When my husband and sister were allowed back they were full of smiles and I finally mustered the strength to ask for details.
According to the surgeons, the scope showed nothing else concerning. They made a long midline incision in my abdomen and found the tumor. It had an impressive network of vessels running to it, cancer loves and needs ample blood supply. There were no large vessels involved so they decided to remove the whole tumor including the vessels that it had taken over. Once a tumor has been attacked with immunotherapy/the immune system it can become somewhat "sticky" and it can be hard to "liberate" from the areas. The team noted some microscopic or suspected microscopic metastatic areas in the sticky parts where the tumor had been so they brought in the radiation oncology team to blast these suspicious areas. A vascular surgeon had also been brought in to help with "liberating" the tumor and to seal off the vessels while my surgeon took the egg-sized mass over to get a look at it. She needed to take some of it for TIL and the remainder for pathology and research. When she cut into it, however, it appeared to be almost entirely necrotic (aka dead!). She said there was 5% or at MOST 10% active tumor left, which should be able to be used for TIL harvest. They would investigate the active areas to see if the immunotherapy had stopped working in those areas or simply hadn't had the time to work. The jury is still out with that one, but overall - what a wonderful surprise! At the last scan it appeared to be growing so we thought it was possible the nivolumab wasn't working at all.
Recovery has been seemingly long and arduous although the distance covered since Wednesday has been impressive. Mostly, the issue has been pain control. We did the usual song and dance of "narcotics don't work for me and make my stomach hurt" "really? just try this one" "nope, not working and sick" "okay how about this one" "nope, same awful thing." And on an on until finally my bleeding risk dropped and I was able to take some ibuprofen. Now I'm up and hobbling around with the help of my belly wrap. I have been freed from the IV pole and I'm now just waiting for my blood counts to return to normal and then I will be released to the care of my family back in Tennessee.
My next planned treatment has been cancelled to give me more time to recover, physically. We need to keep on top of my immune system because even though all visible cancer has been removed or blasted I still have mucosal melanoma cells in my body and blood stream. The good news is that I can likely receive much of my next treatment at home in Tennessee. From here it will be scan, wait, scan, wait, scan, wait...
The battle has been won! And now- on to win the war.
Wednesday, January 11, 2017
I'm finally rested after two busy days of consults and preop visits for my upcoming node dissection on 1/18. Whew! What a whirlwind, both physically and emotionally.
Overall, the team is ready to go and there are specialists in place for anything foreseeable that might come up, which should allow for a good resection with no hesitation to remove or blast things as needed. This is all barring any extensive disease not seen on the scans when they do the initial scope.
I met with:
(1) Urology, who will be putting in stents to help visualize and protect my ureter during the operation. It will help them see it to avoid damaging it, and will also enable them to move it out of the way if they want to radiate and area. This surgeon (Dr. Pisters.... 😆), will be on standby to repair or remove part of the ureter if needed. And won't be shy about doing it!
(2) Rad onc (radiation oncology), who will be available to blast any areas that the surgeons suspect might have local microscopic mets or any area they can't safely remove that still has a piece of tumor on it. The said it will add up to one hour of operating time but is so focused they can target and area as small as a pencil eraser while moving other organs out of the way!
(3) A vascular surgeon (Huynh), who will be on standby if the tumor is more involved with my artery/major veins than the imaging suggests. One big fear going into these appointments was the ultrasound to check for vascular involvement. Overall, I have very healthy veins and, while the tumor has a "good" supply of blood from some of the smaller vessels, they plan to remove those with the tumor and said that the rest of the vasculature in the area should be able to take over the task, no problem. Should the tumor be move involved than it appears, she will be available to come in and remove and repair it.
(4) a Gynological surgeon (Westin) who will be one of the two primary surgeons removing the node tumor and any other suspicious areas. She will be deciding whether or not to go ahead with a surgery after the initial laparoscopic imaging.
And (5), the melanoma surgeon and very active researcher (Wargo) who will be using part of the tumor for TIL treatment for me down the road (assuming the immune cells replicate) and part for several of her many ongoing research projects. She will also be taking a stool sample that will be put into a mouse to recreate my "biome" as part of a study comparing gut bacteria to immunotherapy response (a new and promising frontier in immune therapy research).
This team is 4/5 female (power to the she!) and was assembled with a LOT of pushing and fighting on the part of my medical oncologist and also myself. It is not how things are typically done but they are all happy to be a part of it!
We are all so hopeful that the scope doesn't reveal widespread pelvic mets not seen on scans - that is the biggest foreseeable hurdle, in my opinion. If they DID, they would try to take some for TIL (laparoscopically) and then radiate the area. BUT, we are hoping the nivolumab has kept doing it's job and that I can heal up and resume this treatment soon after. The surgeons are pulling for holding off for 2-3 weeks on the immunotherapy post surgery but Patel is pushing for one week out (since I'm skipping me pre-surgery dose on the 16th). It sounds like it will depend on how I'm healing. I don't know yet when my next imaging and restaging will be, we will discuss that after we see what happens in the surgery.
Saturday, December 31, 2016
An article was just released today in the Annals of Oncology that looked back at a (relatively) large group of individuals with Mucosal Melanoma (MM). The were attempting to answer the question of how different MM is based on the location of the body it beginnings in. When grouped together, you have sinonasal, reproductive/urinary tract, and gastrointestinal "primaries" (or first tumors). The findings were that they are mostly the same and can, therefore, be reasonably studied as a group. This is good news for research (power in numbers) and not surprising to me. I have been a part of an online group of warriors (and their caregivers) facing MM for the majority of this year. There are many primary sites represented but the experiences, successes and challenges, and questions are largely the same. We are all facing the same, formidable foe.
Wednesday, December 14, 2016
A major lesson I have been digesting over the past few weeks that nothing is black and white, not even life and death. After being diagnosed in January and pouring over all the research on mucosal melanoma and its treatment that I could get my hands on, I developed what I considered to be a pretty clear picture of which events meant that I would be kept safe within the fragile confines of ‘being alive’ and which events signaled my imminent expulsion into the unknown world outside of that. Since that time, I have gotten something qualifying for my ‘expulsion is imminent’ news more than once. Shock and depression would follow and I would begin to turn away from hope. However, each time, instead of opening that door to find the dark, unseeable expanse that I imagined, I have found myself somehow wandering into another room that I didn’t know existed, eyes wide to absorb the foreign walls and heart full of cautious gratitude. What do I know? Apparently not all that I thought I did.
Over the past couple of weeks, several new doors and windows have been revealed to me, including an old door that I thought had been padlocked and dead bolted behind me, the entry into which would not grant access to my prior comforts but instead lead to somewhere frightening.
A new CT scan and MRI showed that my tumor has grown again. Imminent demise initially suspected, I went through the perfunctory cycle of shock and depression. However, it was followed, much more quickly this time by audacious hope, because I’m learning that there’s usually a reason for it! Here are some of them:
1- Miraculously, my liver enzymes have returned to normal. I was able to get nivolumab ‘on time’ last week and it didn’t stir the ‘liver damage’ needle one bit. This was very unexpected and very welcome. It means nivolumab can likely stay on the table indefinitely and that I only need to get the labs drawn every other week, prior to treatment.
2 - The growth of the tumor was nothing compared with prior rates of growth. According to MDACC radiologists, it grew approximately .7cm in 7 weeks time. He used the word “slightly” in the report, which I appreciate but don’t fully agree with. However, in the past it has been known to grow 3cm in 4 weeks. So perhaps the nivolomuab is working after all.
3 - After much deliberating, the gynecological surgeon and melanoma surgeon at MDACC have gotten a vascular surgeon on board to agree to a surgery to remove the tumor, in its entirety, as long as a scope reveals that it is feasible. The purpose is primarily to harvest the tumor for TIL, which will hopefully replicate in the lab and can be on hand as a back up treatment method if needed in the future. This is scheduled for January 11.
4 - There is still no spread! The nivoloumab is thought to be particularly helpful at preventing spread, so if my liver is tolerating it well I may be able to continue to get this treatment for a long time. The other tumors that were shriveled by the combination immunotherapy have not returned. Nothing new is apparent. Let’s keep this up.
5 - DR. MARKOVIC. At the urging of a few friends in my cancer support network I have successfully sought, and obtained, a second opinion from a creative and personable doctor at the Mayo Clinic in Rochester, MN. Friendly and impressive hospital aside, the visit was very positive. He told me (and here’s where the old door may reopen) that he would be comfortable giving me a small dose of ipilimumab with my nivo, essentially a dialed-back combination therapy, since I had such a great response the first time. He said they've had success with managing immune-mediated hepatitis with a different type of steroid that allows more immune activity and that if steroid taper of prednisone WERE required again it could be done much more quickly. He’s literally the author of a paper on this. He also recommended intra-operative radiation if I move forward with the surgery at MDACC and told me he would be happy to work with a local oncologist in Nashville as much as possible (that he feels a big role of his is to help local oncologists figure out what to do). He also has a few things brewing and coming down the pike that he thinks are just as good an option as TIL, should I need it in the future.
I’ve got ‘disease progression’ and yet I’m smiling because of the many windows and doors that have been revealed to me. These junctures have become less frightening and I’m realizing that I don’t have any idea what lies ahead, and that that’s ok.
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