No real news this time, for once! It's been ten months since I received TIL therapy. I was back at the hospital for follow-up number seven last week.
First thing on Monday, as usual, I went directly to phlebotomy for a blood draw (only six vials this time). Later in the day, I had a CT scan.
On Tuesday, I had apheresis. To my immense relief (understatement!) the procedure turned out to be the shorter one. Even better, my research fellow spent some time with me, talking about his work in the lab. The conversation helped to get my mind off of the blood circulating out of and back into...me (gack) and I was very thankful for that.
When the requisite amount of white cells had been collected, my husband and I bolted over to Medical Records to pick up the disk of CT images from the previous day's scan. I set up the laptop at one of the teensy tables in the atrium. I was taken aback at how different the scan looks now that I have one fewer lung lobes! I wasn't able to study the images for very long; it was almost time to go to "OP3", where my follow-up would happen.
Even though I expected to hear good news, I had dreaded this appointment for weeks. It was the last one I would have with my current immunotherapy fellow. It makes me sad to think of someone else as my doctor, but I'm happy that he had (what I hope was!) an interesting and fulfilling year on the service. I consider myself most fortunate to have been in his care over the past year, and I am confident that his future patients will feel the same way.
We stepped into the hallway to review the scans, and I stood there thinking how bizarre they look now. My right lung lobes have sneaked their way over to where the now-missing left lower lobe had been. My heart is literally in a new place! "Mother Nature will not tolerate empty space," is what I was told. It's so strange-looking to me. Regarding cancer, my fellow saw nothing of concern. Thank God!
The next morning I met with the thoracic surgeon for follow-up. He wanted to see how the incisions were healing, first thing. Little did I know that he would find something that needed attention. He said that my body was "spitting out a couple of stitches" (gack! again!), and so he removed them. Actually, his assistant removed them but Ow! OW! QUIT IT!!! After that unpleasantness, he had only good things to tell me, so we left the NIH on a high note.
My follow-ups will get stretched out from now on. I'll go back quarterly for a time, and after that, even less-frequently if all continues to go well. I am praying that it will!
Showing posts with label KRAS mutant. Show all posts
Showing posts with label KRAS mutant. Show all posts
Wednesday, May 18, 2016
Monday, April 11, 2016
Queen of X-Rays and of Pain
I am four days post lung surgery. The chest tube is still doing its thing. Sort of. Seems that some air is not making its way to the tube, but instead leaking into other tissues. I am "spongy", they say. Who knew that was a thing? Not me. The thoracic surgeon says this is not a big deal, so I will believe him.
I've had quite a few x-rays since surgery...par for the course, I'm told. I've had two per day for the past few days. I'm becoming a familiar face to the techs.
During grand rounds this morning, I asked the Lab Guru for "the scoop," so he stayed after the others had left and told us all about what's happened in the lab so far, and what will happen next. I got to see photos of the two tumors that were in my lung! ick! ick! ick!
When I saw "Junipero" (who-KNEE-pair-oh), my first reaction was, "So there's the bastard!" My second thought was, "Wow...how many patients have this opportunity? This is amazing." Shortly after that, the ick-factor kicked in and my brain shut off. ha.
Each tumor will be tested in ways that I can't even imagine. It is the first time they've had both a necrotic tumor and a live tumor to study from the same post-TIL patient.
During our conversation, I believe that I solidified my standing of "weirdest patient ever", by accidentally letting the very dear Lab Guru in on the naming convention I have been using all along. I usually hesitate to reveal this to the medical types, but it just came tumbling out. "José is dead! Woo Hoo!" That little outburst led him to ask, "What's the other one called?" Yeah, so.
Stop staring at me.
Backing up to yesterday:
It was a horrible, awful day. I woke at 6 AM in excruciating pain. The chest tube was causing back spasms, the insertion wound felt stabby, my shoulder throbbed, and I could not inhale except for what seemed a woefully inadequate amount. I cried. I sat up in my bed and cried and cried...no sobbing though--that takes too much air. All I could do was wipe away--over and over--the unstoppable stream of tears that slid down my face.
Misery.
During this episode, the surgical fellow walked in. She assessed my situation, checked my suction box thingy, and offered some sincere words of condolence. I hate crying, and I especially hate crying while being watched...watched by a stranger. It was humiliating. So there I was, in pain and humiliated. Not a great way to start the day. The doctor left, formulating a plan as she went, I'm sure. Shortly thereafter, meds arrived and things eventually got better. I don't tolerate narcotics well, but a type and dose was found that works without turning my brain to mush. Thank goodness.
According to the thoracic surgeon, as of this morning I still may have an air leak. He's going to try clamping off the chest tube this evening to see how I do. In the morning I'll get another x-ray, and he will maybe remove the tube.
Today, my job is to walk around as much as possible, and to use the incentive spirometer ten times each hour. Patrick is being helpfully (?) anal about this, and has set a timer on his iPhone to remind me when it's time to use the thing again. Six minutes go by quicker than I thought...it's a lot of work.
I cannot breathe as deeply as I'd like to, yet. I walk slower than I'd like, but when I speed up, I can't pull in enough air to keep me going. I get light-headed and have to stop. I need to figure out the best pace.
I see the Wandering Priest everywhere I go. I accused him of following me, today. "I follow all my patients," was his reply. I wonder if he bi-locates? ha ha
I've had quite a few x-rays since surgery...par for the course, I'm told. I've had two per day for the past few days. I'm becoming a familiar face to the techs.
During grand rounds this morning, I asked the Lab Guru for "the scoop," so he stayed after the others had left and told us all about what's happened in the lab so far, and what will happen next. I got to see photos of the two tumors that were in my lung! ick! ick! ick!
When I saw "Junipero" (who-KNEE-pair-oh), my first reaction was, "So there's the bastard!" My second thought was, "Wow...how many patients have this opportunity? This is amazing." Shortly after that, the ick-factor kicked in and my brain shut off. ha.
Each tumor will be tested in ways that I can't even imagine. It is the first time they've had both a necrotic tumor and a live tumor to study from the same post-TIL patient.
During our conversation, I believe that I solidified my standing of "weirdest patient ever", by accidentally letting the very dear Lab Guru in on the naming convention I have been using all along. I usually hesitate to reveal this to the medical types, but it just came tumbling out. "José is dead! Woo Hoo!" That little outburst led him to ask, "What's the other one called?" Yeah, so.
Stop staring at me.
Backing up to yesterday:
It was a horrible, awful day. I woke at 6 AM in excruciating pain. The chest tube was causing back spasms, the insertion wound felt stabby, my shoulder throbbed, and I could not inhale except for what seemed a woefully inadequate amount. I cried. I sat up in my bed and cried and cried...no sobbing though--that takes too much air. All I could do was wipe away--over and over--the unstoppable stream of tears that slid down my face.
Misery.
During this episode, the surgical fellow walked in. She assessed my situation, checked my suction box thingy, and offered some sincere words of condolence. I hate crying, and I especially hate crying while being watched...watched by a stranger. It was humiliating. So there I was, in pain and humiliated. Not a great way to start the day. The doctor left, formulating a plan as she went, I'm sure. Shortly thereafter, meds arrived and things eventually got better. I don't tolerate narcotics well, but a type and dose was found that works without turning my brain to mush. Thank goodness.
According to the thoracic surgeon, as of this morning I still may have an air leak. He's going to try clamping off the chest tube this evening to see how I do. In the morning I'll get another x-ray, and he will maybe remove the tube.
Today, my job is to walk around as much as possible, and to use the incentive spirometer ten times each hour. Patrick is being helpfully (?) anal about this, and has set a timer on his iPhone to remind me when it's time to use the thing again. Six minutes go by quicker than I thought...it's a lot of work.
I cannot breathe as deeply as I'd like to, yet. I walk slower than I'd like, but when I speed up, I can't pull in enough air to keep me going. I get light-headed and have to stop. I need to figure out the best pace.
I see the Wandering Priest everywhere I go. I accused him of following me, today. "I follow all my patients," was his reply. I wonder if he bi-locates? ha ha
Saturday, March 26, 2016
Follow-Up #6: A Bump in the Road
I am now almost nine months out from "cell day", July 1, 2015. This week, I met with the docs at NIH for my sixth follow-up.
While the results were mostly good, the one tumor that showed up "hot" on PET in October is now very obviously growing. Of seven tumors scattered across my lungs, only this one seems to have not gotten the message that it's time to bounce!
Why did this one tumor not respond to therapy? That's what we hope to discover. My next visit to NIH will (we think) include a procedure by an interventionist radiologist. Though a needle biopsy is theoretically the least invasive means to obtain a tissue sample, my last experience with an I.R. was less than pleasant. By a lot. I have some mental hurdles to overcome before my return to the operating room.
Once the scientists have a sample of the rogue tumor, they'll test it for mutations. If a couple of parameters are met concerning the properties of the tissue sample, a cell therapy may already be available for me. I would undergo the preparatory seven days of chemo, like last time, and then have a different population of cells returned to me. This population of cells was "Set B" from my prior lung wedge surgery. "Set A" were the cells they ended up returning to me in July, but these other cells also reacted to the KRAS G12D mutation. They could potentially be just the ticket for getting this final tumor to start shrinking away.
It is possible that the tumor does not have the two properties we're looking for. In that case, we will have to discuss what the next steps should be. Way-smart medical types are already contemplating all of this, and though I have some inkling of what could be next, I can't address that yet.
It was an emotionally draining day in the clinic (!), but it was encouraging, too. It was far from the worst news I could've heard. My over-arching thought is: There must be More to Learn from my case, and that is a pretty great thing.
Other results: The rest of the tumors remain stable. By RECIST, I'm still at 46% reduction from baseline. No new tumors were seen. TIL therapy is working, at least partially. For that I am excited, and grateful, and ever-more hopeful that it will work for me a second time.
If you pray, please pray especially for the team of doctors and scientists connected to my case. Pray for revelation to complement the determination they already possess. Pray that they do their best work. Pray that I, and they will cooperate with Divine Grace for the outcome that God wills.
Whew. That's a lot of prayers. THANK YOU!
While the results were mostly good, the one tumor that showed up "hot" on PET in October is now very obviously growing. Of seven tumors scattered across my lungs, only this one seems to have not gotten the message that it's time to bounce!
Why did this one tumor not respond to therapy? That's what we hope to discover. My next visit to NIH will (we think) include a procedure by an interventionist radiologist. Though a needle biopsy is theoretically the least invasive means to obtain a tissue sample, my last experience with an I.R. was less than pleasant. By a lot. I have some mental hurdles to overcome before my return to the operating room.
Once the scientists have a sample of the rogue tumor, they'll test it for mutations. If a couple of parameters are met concerning the properties of the tissue sample, a cell therapy may already be available for me. I would undergo the preparatory seven days of chemo, like last time, and then have a different population of cells returned to me. This population of cells was "Set B" from my prior lung wedge surgery. "Set A" were the cells they ended up returning to me in July, but these other cells also reacted to the KRAS G12D mutation. They could potentially be just the ticket for getting this final tumor to start shrinking away.
It is possible that the tumor does not have the two properties we're looking for. In that case, we will have to discuss what the next steps should be. Way-smart medical types are already contemplating all of this, and though I have some inkling of what could be next, I can't address that yet.
It was an emotionally draining day in the clinic (!), but it was encouraging, too. It was far from the worst news I could've heard. My over-arching thought is: There must be More to Learn from my case, and that is a pretty great thing.
Other results: The rest of the tumors remain stable. By RECIST, I'm still at 46% reduction from baseline. No new tumors were seen. TIL therapy is working, at least partially. For that I am excited, and grateful, and ever-more hopeful that it will work for me a second time.
If you pray, please pray especially for the team of doctors and scientists connected to my case. Pray for revelation to complement the determination they already possess. Pray that they do their best work. Pray that I, and they will cooperate with Divine Grace for the outcome that God wills.
Whew. That's a lot of prayers. THANK YOU!
Monday, January 11, 2016
Happy New Year
Yesterday we took down our Christmas tree. I was dreading that event, not only because it involves a lot of mess, but because having a fresh, fragrant tree decorated in memories and multi-colored lights smack-dab in the center of our home is, to me, one of life's most glorious peculiarities.
I am happy that Christmas 2015 left a wake of joy behind--not at all like 2014.
On the very last day of 2014, I met with a Big Deal physician at a branch of a university hospital here in Michigan to get a second-opinion on my case, and to find out if that institution offered any clinical trials that might help me.
It was a frustrating visit. The doc seemed to contradict himself. He said that I was "extremely healthy", but also that I was suffering from "a disease for which there are no known therapies." He agreed that the National Institutes of Health would be "the best place" for me, but tempered that with, "The chances of getting into a trial there are about 2%."
Thanks for nothing, doc. One thing I've noticed--and this doc is not the only one who did this--is that once they realize my case is "terminal", I become invisible to them. Instead of talking to me, they talk about me. No longer are we making eye contact, though I try. Usually, the physician will turn toward my husband and start speaking to him. Maybe it's a coping mechanism. Maybe they aren't aware that they're doing it. I notice. I am not dead yet. Look me in the eye and you'll see...
I tried not to let this guy's comments and manner affect me. I'd rather hope for the best than expect the worst. Where there is life, there is hope!
At the end of this month, I'll be back at NIH for follow-up #5. Last visit, I met criteria for Partial Response, pending a confirmation scan. Follow-up #5 will include that confirmation scan. Suspense takes on a new sort of gravity when it's your own story being written! I will let you know what the docs discover.
I am happy that Christmas 2015 left a wake of joy behind--not at all like 2014.
On the very last day of 2014, I met with a Big Deal physician at a branch of a university hospital here in Michigan to get a second-opinion on my case, and to find out if that institution offered any clinical trials that might help me.
It was a frustrating visit. The doc seemed to contradict himself. He said that I was "extremely healthy", but also that I was suffering from "a disease for which there are no known therapies." He agreed that the National Institutes of Health would be "the best place" for me, but tempered that with, "The chances of getting into a trial there are about 2%."
Thanks for nothing, doc. One thing I've noticed--and this doc is not the only one who did this--is that once they realize my case is "terminal", I become invisible to them. Instead of talking to me, they talk about me. No longer are we making eye contact, though I try. Usually, the physician will turn toward my husband and start speaking to him. Maybe it's a coping mechanism. Maybe they aren't aware that they're doing it. I notice. I am not dead yet. Look me in the eye and you'll see...
I tried not to let this guy's comments and manner affect me. I'd rather hope for the best than expect the worst. Where there is life, there is hope!
At the end of this month, I'll be back at NIH for follow-up #5. Last visit, I met criteria for Partial Response, pending a confirmation scan. Follow-up #5 will include that confirmation scan. Suspense takes on a new sort of gravity when it's your own story being written! I will let you know what the docs discover.
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