Saturday, June 17, 2017

Cheers to Checkpoint Inhibitors



Today marks one year since I began immunotherapy and was given a chance at a longer life.
In the days leading up to this I was navigating the murky waters of some pretty scary news. The biopsy that I pushed for had come back positive for melanoma. The rigorous biochemo therapy treatment that I had just completed had not prevented a re-occurrence and I was officially at an advanced stage of cancer. I had returned to MDACC in Houston to discuss the next plan and learned that not only was it back but the tumor was dangerously encasing an main artery in my pelvis and therefore inoperable. Also, the MRI showed a few more tumor deposits nearby. My list of treatment options instantly got a whole lot shorter and I was essentially sent back to Tennessee with fingers crossed that systemic immunotherapy drugs would buy me a little more time with my son.

The type of immunotherapy I started, two checkpoint inhibitors (Opdivo & Yervoy), were newly approved by the FDA, were expensive and were not well understood and - most importantly - were not likely to work! Though these drugs work on some people with mucosal melanoma to shrink or stop tumors and spread, there are many more for whom they don’t, or at least not for very long. For me- though it has not been without some pretty scary bumps in the road - in all that time I haven’t had any new metastases or spread. It almost doesn’t sound correct to say that out loud because it hasn’t been a straight path. There was a severe immune reaction caused early on by the treatment, requiring a reversal of my heightened immune state with high dose steroids and lots of worry when the tumor grew again, and again – even when I started one of the drugs again. However, we were extremely fortunate that, not only had the drugs stopped spread for that time, but they also caused the tumor to become operable. And we operated - leaving me currently “NED” (no evidence of disease). The hope is that I will have a clear PET scan next month and try a few months without any treatment at all. And then a few more. 

No one dares utter a word like “cure” around someone with mucosal melanoma because this isn’t a cancer that is eradicated and just never returns. But each new day without spread is a small triumph of time. Time is the thing. We would give anything to manipulate it or to have more of it. To gift time is to do the impossible. So – cheers to the checkpoint inhibitors, because that is just what they have done for me.

Sunday, April 30, 2017

April Health Update

 Many of you have been asking me for a health update and I have been waiting until I actually have something to report.  I've been feeling somewhat guilty about my lack of writing but I'm very happy to report this is mostly due to my gradual return to life and my academic and other writing projects. However, I now do have something to report! But I will keep this brief. I had a new set of scans this past week. It's a month earlier than planned because I was having a minor increase in pain that didn't fit with the steady pace of healing from surgery three months ago. I had two scans. A chest/abdomen/pelvis CT scan and an MRI of the pelvis. The CT showed nothing suspicious other than a large ovarian cyst. I had a visit with my new oncologist at Vanderbilt the following day and he said that this result, combined with improved bloodwork/labs was a very promising sign and he would call me or message me with the result of the MRI when it was available. The CT scan is apparently best for visualizing the chest and abdomen and any large masses, but is a little difficult when it comes to the finer details of the pelvis, the area we are most concerned about for a reoccurence. Fortunately, the MRI also came back with nothing concerning, save a "run of the mill" ovarian cyst that we will "watch."

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.

JB


Wednesday, March 1, 2017

A New Chapter






A new treatment plan:

A couple of days ago I had my post op visit with my surgeons and a treatment planning visit with my medical oncologist at MDACC. It had been 6 weeks since my surgery, 8 weeks since my last nivolumab treatment, and I had new MRI and CT scans. The visit went about as well as any I’ve ever had. Scans showed nothing more than changes consistent with my recent surgery, TIL harvested from the small active area of the tumor actually grew in the lab and is sitting in the MDACC freezer and can be used for treatment down the road. I was also told by my oncologists that I was free to be released from MDACC’s care unless I need to come back for TIL and they are just a phone call away. I have established myself with a local melanoma oncologist, Dr. Doug Johnson, who comes highly praised and is in very regular contact with Drs. Patel and Wargo. 

Dr. Wargo took pictures of my arm because it was “fascinating” and we discussed her recent presentation of preliminary data, that I was a part of, related to the microbiome of the gut and response to immunotherapy (the take away was that better responders tended to have a more diverse gut microbiome, very interesting and considered the “new frontier” in immunotherapy research). I mentioned, per a discussion in my MM facebook group, that she should look at the vaginal microbiome in vaginal cancers and she smiled and said that she and my other surgeon, Dr. Westin, were already planning to partner in research on the microbiome and gynecological cancers. I don’t believe they knew each other before my surgical case came up. Dr. Wargo whipped out her phone and sent a text to her that I looked great post op and shared a picture we had taken together. 

Dr. Patel agreed with the treatment plan that my new local oncologist at Vanderbilt had discussed. That is – a few more months of nivolumab every other week then a full body PET/MRI in the summer. If I continue to be NED (no evidence of disease – all the fingers and toes crossed) then we will discuss coming off of treatment entirely and going to quarterly scans/monitoring (and bye bye power port!). I told my oncologists at MDACC that I hope I never see them again (with a big smile) and they agreed. Although, they are happy and willing to contribute to the Mucosal Melanoma Awareness video and even asked if I would be interested in being on panels or involved in survivor research at MDACC. If I do see them again, I hope it is in that context alone.

I did not get to say thank you and goodbye to Dr. Westin, the gynecological oncology surgeon that partnered with Dr. Wargo, because we wanted to get home a day early and Dr. Wargo said I looked great and it wasn't necessary. However, I really hope to see her on non-treatment terms in the future so that I can do so. 


A new reality:

I would like to stress, as always, that this is not over. Not by a long shot. With each new quarterly scan comes the reality that a reoccurrence is the MOST LIKELY outcome. However, with each new scan that shows NED, that likelihood continues to decrease. Dr. Patel said that three years NED (for me let’s hope that means January 2020) appears to be an important milestone as most reoccurrences occur within that time-frame.

This cancer and its treatments have so far left me with many scars and limitations but certainly not as much as many other people that I know of or know personally. I am very fortunate.

Some of my scars and losses are visible. I have a scar from my port on my right chest and still have the port in place. The other visible scar is from my recent surgery – it is only about 4 inches long and runs from my belly button straight down.  My original surgery, called a radical vaginectomy, removed about a third of the upper portion of my vagina and sounds a lot scarier than it was. To be honest, I can’t tell at all. The worst part was the healing of my urethra because they have to create a thinned portion to get “clear margins” but it didn’t take long to heal using a catheter bag for a while. Really, the vagina is an amazing thing and after pushing an over 8lb baby with shoulder dystocia out of it, it could probably have used a bit of a rejuvenation. Though I am told it is very stretchy and built to accommodate birth and recover just fine, tell that to anyone who has delivered a baby vaginally and you will get a big eye roll.   

I lost my hair. I wrote a blog post about this earlier. It's growing back in fine but so much more unruly when short! The waves, which we much more manageable when it was long, are just doing whatever they want to do. I'll be grateful when it grows out some more. 

I have lost pigment! My skin has experienced a lot of pigment loss including vitiligo on my shoulders and arms and spots and halo moles around my torso. I keep getting strange rashes and keratosis pillaris patches and will probably have skin issues for a long time. My face, as I’ve mentioned previously, has lost all of its freckles, save on the skin around my eyes. Fortunately, I’m also told it has made me look younger, so I won’t complain too much on that account.

I have been blessed beyond belief that any pain I experienced while I had active cancer was rather mild and I’m almost completely healed from surgery and radiation now and feel almost no pain at all. I am exceedingly fortunate that the pelvic exenteration surgeries that used to occur for someone with my diagnosis (surgical removal of almost all organs in the pelvis including bladder, urethra, uterus, vagina, sometimes rectum and bowel) had gone out of vogue since there was evidence that it didn’t actually prevent reoccurrence, though I would have done just about anything to survive. As it turns out, it would have reoccurred in my pelvic nodes either way.
  
The greater losses, assuredly, are those that "might have been." I have certainly been schooled in the reality that I don’t really have a clue what the future holds for me but I do know what has been recommended to me (not to do).

I am at high risk for pelvic fracture due to the IORT (intraoperative radiation) directly to my pelvic side wall. The radiation oncologist told me to avoid contact sports and I joked that the only thing close to contact sports I see in my future is riding my horse. He chuckled grimly and said the only time he’s ever heard of pelvic fracture actually occurring after radiation is in “equestrians.” Great. So maybe my somewhat wild mustang mare that likes to throw me when she’s having a bad day is NOT the best idea. No more riding Chai. 

It is recommended that I do not get pregnant again. In the beginning, this recommendation was discussed a lot with the maternal fetal specialist and others. However, I did what I could to prevent any doors being closed on the possibility, just in case, and now that I’ve had a good response to the immunotherapy and the discussion didn’t seem quite as pointless, I broached the subject again with my oncologist at MDACC. I asked if the recommendation is a red light or a yellow light and if there’s ever a milestone when it becomes a green light. While it’s very hard to say and generally people are told five years is a good rule of thumb, it’s more complex with immunotherapy. Right now it is a red light, mostly because I’m on a treatment that you can’t be on while pregnant. However, it CAN change to a yellow light after treatment, and possibly a yellowish green light in the future. Importantly, it will never be truly green due to the reality of the immune system changes that occur during pregnancy. Given that my whole recovery hinges on a highly active immune system, a suppressed immune system might give any lingering cancer cells an opportunity to take hold, causing a reoccurrence and putting me back in the exact same position I was when this whole thing started. Fortunately, we have James. And he has much “muchness.” I plan to write another blog about this in the future, with more detail and thoughts. But – this is already one of my longer blog posts and I don’t want to take up too much more of your time.  


A new home:

Now that I’ve climbed out of my recovery trench a bit and allowed myself to feel the emotions that sidelined me after surgery I’m trying to figure out what my “moving on” looks like. For some, moving on means doing something completely unrelated to cancer. For me, it won’t but I'm still trying to decide what shape it will take. Moving on in the midst of ongoing treatment and expected reoccurrence is complex but still something that needs to happen for me to regain some sense of normalcy after a period of time when my health was even more than a full-time job. I recently applied for a post-doctoral fellowship at Vanderbilt and though I didn’t get the position I made some great contacts and got myself geared up to returning to work in clinical health psychology. I am so fortunate that my career choice and training prior to my diagnosis positions me so well moving forward to easily channel my experiences into my own work. I can give back while still getting back to myself. There aren’t many formal “post-docs” in Nashville for me but I believe I can build something great, meaning that I will need to be in the city a lot moving forward. But here’s the thing – Nashville is a growing city. I don’t mean there are new buildings popping up here and there. I mean that right now Nashville is a magnetic force, drawing people into it, and bursting at the seams while builders are scrambling to pile newer and bigger buildings on top of one another and it doesn’t show signs of slowing down. The small arteries of the interstates and roads into the city are strained and congested and underprepared for this growth. When we bought a horse farm on the edges of town last year it took a little over 30 minutes to make it into the city. The commute is now over an hour and growing.

Time is precious. If the past year has taught me nothing else it is to not take time for granted. Two hours of commuting each day is a big loss of time. Though we have always wanted to live on a farm and love being in the country, at this point in our lives we have decided that time is more precious and so we are moving in to the city. The farm can be our dream for another time. A new home, a new start. More time together as a family – that is the most important thing.

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Please consider giving to the mucosal melanoma awareness video, we are only about $1,800 away from being fully funded! We have lots of MM patients and oncologists ready to be a part of it we just need this last bit of funding. 


Friday, January 27, 2017

A Cold War

 It was one year ago today that I got a call from my OBGYNs office requesting that I come in immediately to speak with my doctor. Living far away I assured them that I would not be able to make the drive before the close of business. They told me to come any way. It was then, for the first time, that I realized there might be something seriously wrong. That was the day I was diagnosed with mucosal melanoma. To say that a lot has happened in the past year is a gross understatement. Despite the odds, however, after many scans, biopsies, failed treatments, surgeries, scars and side effects I find myself today with no evidence of disease (NED)- that coveted state of affairs in the cancer world that has come to replace the term "remission" as a more accurate way to describe not having visible cancer. 

I was in the hospital for several nights last week following my successful surgery. Now that I have returned home to heal with instructions to take a break from treatments for the next month I find myself faced with a new challenge. 

What do I do with the fighting energy when the fight is over - at least for now? 

I thought I would feel boundless. I imagined euphoric dancing in the pastures around my house as wildly as my healing scars would allow me. I imagined diving head first into my new life with hope for the end of my cancer and an unbridled passion for making good things come out of my experiences. I looked forward to excitement for all that I can tackle with my new free time with a break in the treatments and its side effects. 

Instead, I find myself feeling just- limited. Limited by the surgeons' warnings to not to move too much or too fast, not to lift and play with my son. Limited by my well-founded fear that this thing isn't over and that celebrating now might at best feel ingenuine and at worst jinx the good news. Limited in my list of things to DO. 
After months of constant travel and treatment and monitoring and worrying I was in high gear attack mode! Every thought that I had was in the interest of prevailing, strengthening, fighting and never giving up. I was J.B. the Conqueror, up against the mightiest of foes! But, now that the foe is badly wounded I find that I reflect not on what I have overcome or the strength that I have gained but on my own wounds.   I had expected to take this time to look back and smile at all the good that has come of this challenging year. But instead I find myself feeling levels of anger and sadness and loss that I hadn't allowed myself to feel when I was the inspiring Warrior at Arms.  
I have lost things. I have lost time, health, dreams, a blissfully ignorant feeling of security, and worst of all I have lost people. 

I'm charged with healing now and becoming whole but I am feeling rather broken. 

It's hard to feel triumphant when there remains so much uncertainty about the future. There is no finality where I stand, and there is no fight to occupy me. 
We are in a cold war now. And I am trying to recognize and to adapt to the new surroundings. I've read about things like survivors guilt and the difficulties of survivorship. I never quite understood them before but I feel I'm getting a taste now. 

There will be celebration. There will be joy. But there will also be a lot of other things. And that doesn't make me weaker or mean that I've lost. It's just another, less visible, battle scar. 


Thank you all for being there for me during this wild and crazy year!!! 

Sunday, January 22, 2017

The war rages on



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

Pre op visits and surgical plan

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.