So just to catch you all up, I did 2 cycles of the new trial medication. One week on (10 pills a day, half in the morning, half at night), two weeks off. So a total of 6 weeks.
I had some mild side effects similar to the infusion chemo, such as hair loss, some mouth sores, fatigue. They weren't as bad as the regular chemo ones were, and did not last as long (other than the hair loss, it all fell out.)
Yesterday we went in for a CT scan to see if the new drug was working and how much progress we made.
We don't have the official report back with all the measurements, but the visual read on my ct scan was shrinkage at ALL tumor sites, and no new locations. And all my organ functions are holding up well to the treatment. The best news we could have asked for.
Now we do 2 more cycles and check again. Here's to 6 more weeks of progress. Love you all!
Friday, June 16, 2017
Tuesday, May 2, 2017
New Drug Trial Starting
Just spent a long morning at the hospital getting everything squared away for the new drug. We did some more blood work, EKG, and a head CT to round off the baseline tests before we start. Signed off on the consent forms to participate in the one person "trial" for an experimental treatment. They have to review all the labs now and send everything back to the hospital's research department, and that will give them the final OK to dispense the drug, which has arrived and is waiting at the hospital. So on Thursday morning I go back to actually receive the drug.
It's an oral medication that I will take twice a day for 7 days at a time. There is a 2 week break between each treatment period. After 14 days (so, one week on the drug, and then one week off) I go back for more testing to see how I'm responding in terms of my blood counts and such. After 2 full cycles (of 7 days on and 14 days off, so in other words, after a total of 42 days) we'll do another CT scan to see how the tumors are actually reacting to the drug.
The biggest risk for this medication is a drop in blood counts. It behaves in a somewhat similar fashion to chemotherapy in that it does interrupt cell growth cycles, so it can produce some similar side effects. There is also a pretty good chance I may lose my hair again. Incidence of more severe side effects are currently low.
For today, all my labs looked good, my lung function is still normal, and other than being a little worn out from a long weekend of camping, I'm feeling pretty good. :-) Please send a storm of prayers that this medication is the one we've been waiting for!
Tuesday, April 18, 2017
Radiation Success! And Other News
Hey guys! I have some really good news, and some slightly disappointing news.
I'll get the disappointing news out of the way first: they still haven't finished the paperwork for my trial drug. :-/ Since they are essentially doing a one-person clinical trial just for me, they have to write out a whole protocol and consent and everything, and their people have not yet approved the written proposals yet; they keep sending them back for modification. So, Dr Kang is HOPING next week they'll finally have it ready. It does sound like they have already acquired the drug, so that's a good thing. We just have to get this paperwork out of the way.
Now for the good news- the radiation worked REALLY well!!! The upper lobe of my left lung has been collapsed for months (even after they did the surgery while I was in the hospital, they were only able to get the lower lobe open), is now almost completely re-inflated. The tumor has shrunk dramatically. And the best part is, the radiation doc said that 12 weeks after treatment was sort of the "peak" performance of the treatment, and we're only at about 6 weeks- so the radiation could actually continue to shrink the tumor for 6 more weeks at least! So that is awesome, we weren't sure if the tumor would be very responsive, but it definitely has been. My blood work also looked good.
So now we just have to wait, hopefully not too much longer, to start my new trial drug. As always, please keep those thoughts and prayers coming!! I love you all, and could not do this without your support. <3
Friday, March 31, 2017
Updates
Hey guys! So we met with Dr Kang today. All the final approvals are done for the clinical trial drug. BUT, we're not starting it just yet. For one thing, we got the APPROVAL for the drug, but we don't have the actual drug yet. And for another, he wanted to wait a couple weeks to let the radiation have more time to work. We're still going to end up getting some crossover- the radiation can keep working out to 12 weeks or so, so there will be a period where we may not be positive what's affecting the tumors, the radiation or the drug. But waiting 12 weeks is not a good idea obviously. So we go back in a few weeks to get a fresh CT scan, and start the drug. In the meantime, he said my lung sounds great and my bloodwork is excellent. :-) So, just going to keep on doing what we're doing!
Monday, March 20, 2017
Radiation Week 2
Only 3 days of radiation left! We met with the doc today. He said everything is looking good, my airway and tumor are holding stable. Unfortunately, we found out that we won't see any actual shrinkage for up to 12 weeks after treatment. They didn't mention that before. 
:-/ So, holding stable is good, but it will be a while before we know if the radiation had any significant effect on the tumor. It's also possible that the side effects won't hit me for a few weeks- I'm feeling a LITTLE off right now, but he said that over time, I could develop more serious side effects like painful or difficult swallowing. So, treatment is almost done, but it sounds like I have a couple months of surprises in store when it's over. 
:-P Oh well. Onward and upward!
:-/ So, holding stable is good, but it will be a while before we know if the radiation had any significant effect on the tumor. It's also possible that the side effects won't hit me for a few weeks- I'm feeling a LITTLE off right now, but he said that over time, I could develop more serious side effects like painful or difficult swallowing. So, treatment is almost done, but it sounds like I have a couple months of surprises in store when it's over. :-P Oh well. Onward and upward!Saturday, March 18, 2017
Radiation Week 1
Just touching base. First week of radiation went well. Had a little fatigue, but nothing much else. Because of the depth they're radiating, they said I should not experience any skin irritation or other side effects- possibly some minor irritation of the lower esophagus, but I really haven't even noticed that too much. The appointments are very easy, just 10 minutes lying in a machine similar to a CT scanner. We only see the actual doctor on Mondays, so right now we're just doing the treatments- Monday we'll meet with him again, I'm not sure if we'll be discussing how effective the treatments have been or not. Last time we just discussed side effects and overall health.
Another 4 days of radiation, and we move on to the new oral treatment on Friday. Dr Kang has already set up the appointments for that. We'll be meeting with him a week after I start the new drug, on the 31st.
Other than that, feeling fine. My back is getting a little sore from time to time, but it's well controlled on my regular meds. Will post more updates when I have them.
Another 4 days of radiation, and we move on to the new oral treatment on Friday. Dr Kang has already set up the appointments for that. We'll be meeting with him a week after I start the new drug, on the 31st.
Other than that, feeling fine. My back is getting a little sore from time to time, but it's well controlled on my regular meds. Will post more updates when I have them.
Tuesday, February 21, 2017
Post-Chemo Updates
Just met with Dr Kang and had some scans done.
The last two rounds of chemo were unsuccessful. We knew that it would stop working sooner or later- that's why chemo is not a long term option. It appears that we have now used up it's usefulness.
Dr Kang has gotten approval for me to try another experimental medication. It has been used in a type of pediatric tumor that shows very similar characteristics to mine, including the missing genes. 4 out of 5 patients have had good results from the drug, so he is hopeful that it will be effective against mine. We are waiting for one more piece of administrative something or other to get done, and then we will be able to start the drug.
In the meantime, I have my bronchial surgery on Monday- they are going to re-check my airway and hopefully put in the permanent stent they wanted to do in the first place but were unable to. We are discussing the option of possibly doing some radiation immediately following that procedure, as another way to possibly shrink the tumors a little bit before we start the new drug. The final decision on radiation will be made after Dr Kang gets the report back from my procedure on Monday.
So for the next week, it's just a rest and wait deal. Monday we'll have some more answers and updates on how we're going to proceed for the next couple weeks. Dr Kang was hopeful that he could finish getting the drug ready in a week or two, so any radiation that we do will probably be very short term.
Love you all. Keep praying..
The last two rounds of chemo were unsuccessful. We knew that it would stop working sooner or later- that's why chemo is not a long term option. It appears that we have now used up it's usefulness.
Dr Kang has gotten approval for me to try another experimental medication. It has been used in a type of pediatric tumor that shows very similar characteristics to mine, including the missing genes. 4 out of 5 patients have had good results from the drug, so he is hopeful that it will be effective against mine. We are waiting for one more piece of administrative something or other to get done, and then we will be able to start the drug.
In the meantime, I have my bronchial surgery on Monday- they are going to re-check my airway and hopefully put in the permanent stent they wanted to do in the first place but were unable to. We are discussing the option of possibly doing some radiation immediately following that procedure, as another way to possibly shrink the tumors a little bit before we start the new drug. The final decision on radiation will be made after Dr Kang gets the report back from my procedure on Monday.
So for the next week, it's just a rest and wait deal. Monday we'll have some more answers and updates on how we're going to proceed for the next couple weeks. Dr Kang was hopeful that he could finish getting the drug ready in a week or two, so any radiation that we do will probably be very short term.
Love you all. Keep praying..
Wednesday, February 8, 2017
Last Day
Pump comes off tonight! Exciting stuff. It won't automatically make me feel better, but, it means I can take a real shower and sleep normally, so that's something.
The procedure that was tentatively scheduled for Friday has been put off again, owing to me still feeling pretty crappy. (If you lost track, they still want to go back into my lung/airway and see if anything else needs to be removed to help prevent future problems.) We don't have a new date for that procedure yet.
My next appointment is on the 21st, and that will include a CT scan to see how these 2 rounds of chemo have worked. I'm on the schedule for a third round, but Dr Kang agreed that we can discuss it, and that (presumably unless the scans show something troubling), we can feasibly go either way at this point: continue chemo until we stop seeing results, or start the new medication. There is some logic to continuing chemo while it's working well, but given how these last 2 rounds have hit me, I'm really not opting for that choice if we don't absolutely have to. If he feels comfortable with where these 2 rounds have gotten us, I would rather try the new medication right away and see how that does instead. Going back to chemo is always an option, even if it's a sucky one. It will really come down to the scans, and if these 2 rounds have bought us enough time in regards to the size of my tumors, or if we feel that we should try to beat them down a little further.
So that's where we're at. I will say, this round is going SLIGHTLY easier than last round- probably only because I'm not stuck in a hospital bed for 12 days after already being very ill. But still, so far I've dodged the emergency fluids (knock on wood) and I feel I've kept up on my eating a little better. Hopefully this weekend I'll bounce back well, and be ready for work on Monday. Because as always, my clients are forming a long line waiting for me to return.
More updates posted as they occur. Love you guys. Keep praying.
The procedure that was tentatively scheduled for Friday has been put off again, owing to me still feeling pretty crappy. (If you lost track, they still want to go back into my lung/airway and see if anything else needs to be removed to help prevent future problems.) We don't have a new date for that procedure yet.
My next appointment is on the 21st, and that will include a CT scan to see how these 2 rounds of chemo have worked. I'm on the schedule for a third round, but Dr Kang agreed that we can discuss it, and that (presumably unless the scans show something troubling), we can feasibly go either way at this point: continue chemo until we stop seeing results, or start the new medication. There is some logic to continuing chemo while it's working well, but given how these last 2 rounds have hit me, I'm really not opting for that choice if we don't absolutely have to. If he feels comfortable with where these 2 rounds have gotten us, I would rather try the new medication right away and see how that does instead. Going back to chemo is always an option, even if it's a sucky one. It will really come down to the scans, and if these 2 rounds have bought us enough time in regards to the size of my tumors, or if we feel that we should try to beat them down a little further.
So that's where we're at. I will say, this round is going SLIGHTLY easier than last round- probably only because I'm not stuck in a hospital bed for 12 days after already being very ill. But still, so far I've dodged the emergency fluids (knock on wood) and I feel I've kept up on my eating a little better. Hopefully this weekend I'll bounce back well, and be ready for work on Monday. Because as always, my clients are forming a long line waiting for me to return.
More updates posted as they occur. Love you guys. Keep praying.
Saturday, February 4, 2017
Round 6
Started round 6 of chemo yesterday. Spent the day at the hospital getting the first 2 drugs and all my extra fluids and whatnot. Got home about 7pm, had some dinner, and went to bed. Woke up feeling about the same- I've been tired and a little bleh all week, but nothing serious. Today will be spent on the couch, keeping up with my food, fluids, and meds like a good girl. I'm off all week, so I don't have to worry about anything else until Monday the 13th. The pump finishes my last chemo med on Wednesday evening. Then I'll have 5 days to finish recovering before I go back. I gave myself a little extra time this round, since I was still feeling pretty weak when I started working again last time.
That's all the news for now. It'll still be a couple weeks before we do the scans to see how these 2 rounds worked, and then Dr Kang will decide where to go from here. We did talk to him in the hospital yesterday, it sounds like he did procure the new drug for me to try, he's just waiting on FDA approval for me to be a single-person study at Johns Hopkins, since as always, the drug is not approved for my cancer, because we don't know what my cancer is. He said he doesn't foresee them giving him any trouble about it though, so if the scans show that the chemo did good work this time, we'll most likely start with that soon. If he thinks that a little more chemo might be the better way to go first, then we might do another round instead. Not my first option, but he's the expert, so as long as my body is handling it okay, we'll go with what he thinks is best.
That's all the news for now. It'll still be a couple weeks before we do the scans to see how these 2 rounds worked, and then Dr Kang will decide where to go from here. We did talk to him in the hospital yesterday, it sounds like he did procure the new drug for me to try, he's just waiting on FDA approval for me to be a single-person study at Johns Hopkins, since as always, the drug is not approved for my cancer, because we don't know what my cancer is. He said he doesn't foresee them giving him any trouble about it though, so if the scans show that the chemo did good work this time, we'll most likely start with that soon. If he thinks that a little more chemo might be the better way to go first, then we might do another round instead. Not my first option, but he's the expert, so as long as my body is handling it okay, we'll go with what he thinks is best.
Thursday, January 26, 2017
Chemo Round 5 - Updates
Hey guys- sorry for the long silence.
I got home on Thursday, feeling week and exhausted, but otherwise not too bad. Unfortunately, the next few days consisted of my lowest points. My mouth got very sore, and my stomach was very nauseated, so eating and drinking became difficult, and I became dehydrated. Sunday, I was feeling so poorly that Ty had to start an IV and give me a few bags of fluid. That got me through the roughest part, and with a lot of soup and meds, by Monday morning I felt much better.
I worked all week, and every day I've felt better and better. As of today (Thursday) I now feel better than I did before my hospitalization- better than I've felt for months, actually. I'm back off all my support meds and on a normal diet. My mouth is pretty much healed, other than the taste being mostly gone again. My back pain is gone- which is something that wasn't even accomplished prior to my hospitalization. (More about that in a moment.) All in all, I feel good. We've been cleaning the house and getting stuff squared away at the shop so that everything is in order for my next round, and I won't have anything to deal with except resting and healing.
So when we first met with Dr Gounder about the drug trial, he mentioned something that may now be relevant. Apparently there's been a strong trend in the research, that even if the drug does not succeed in shrinking the tumors by itself, if people go back to chemotherapy afterwards, it seems to work better than normal for a while. Like the drug manages to at the very least, weaken the defenses of the tumors, making them more vulnerable to the chemo drugs. It's very early to make any assumptions, but it's definitely a possibility that could happen with these two rounds of treatment. For the moment, I'm taking it as a hopeful sign that my back pain disappeared so quickly after the first round of chemo. Though it had gotten better and worse at various times, it really hadn't reached a point of disappearing at any point during the drug trial. It will be a few more weeks before we get any solid information though. My next round of chemo starts Friday the 3rd. The pump will be on until Tuesday evening. After that, it will probably be 2 weeks or so until they schedule the scans, to give the second round time to do it's job. If the scans show that we shrank the tumors sufficiently to where none of them are posing any immediate threat (like trying to collapse my lung again), we'll move on to the medication Dr Kang is working on procuring from the FDA for me.
So that's where we're at now. Until the 3rd, it's life as usual. Then we start the whole fun process over again.
Time for bed- night all!
I got home on Thursday, feeling week and exhausted, but otherwise not too bad. Unfortunately, the next few days consisted of my lowest points. My mouth got very sore, and my stomach was very nauseated, so eating and drinking became difficult, and I became dehydrated. Sunday, I was feeling so poorly that Ty had to start an IV and give me a few bags of fluid. That got me through the roughest part, and with a lot of soup and meds, by Monday morning I felt much better.
I worked all week, and every day I've felt better and better. As of today (Thursday) I now feel better than I did before my hospitalization- better than I've felt for months, actually. I'm back off all my support meds and on a normal diet. My mouth is pretty much healed, other than the taste being mostly gone again. My back pain is gone- which is something that wasn't even accomplished prior to my hospitalization. (More about that in a moment.) All in all, I feel good. We've been cleaning the house and getting stuff squared away at the shop so that everything is in order for my next round, and I won't have anything to deal with except resting and healing.
So when we first met with Dr Gounder about the drug trial, he mentioned something that may now be relevant. Apparently there's been a strong trend in the research, that even if the drug does not succeed in shrinking the tumors by itself, if people go back to chemotherapy afterwards, it seems to work better than normal for a while. Like the drug manages to at the very least, weaken the defenses of the tumors, making them more vulnerable to the chemo drugs. It's very early to make any assumptions, but it's definitely a possibility that could happen with these two rounds of treatment. For the moment, I'm taking it as a hopeful sign that my back pain disappeared so quickly after the first round of chemo. Though it had gotten better and worse at various times, it really hadn't reached a point of disappearing at any point during the drug trial. It will be a few more weeks before we get any solid information though. My next round of chemo starts Friday the 3rd. The pump will be on until Tuesday evening. After that, it will probably be 2 weeks or so until they schedule the scans, to give the second round time to do it's job. If the scans show that we shrank the tumors sufficiently to where none of them are posing any immediate threat (like trying to collapse my lung again), we'll move on to the medication Dr Kang is working on procuring from the FDA for me.
So that's where we're at now. Until the 3rd, it's life as usual. Then we start the whole fun process over again.
Time for bed- night all!
Monday, January 16, 2017
Can't Sleep, Clowns Will Eat Me...
Well, it was bound to happen sooner or later- I'm officially tired of sleeping. This bed is horribly uncomfortable, and there doesn't appear to be a sufficient quantity of drugs in my system to overcome it tonight. Granted, I did doze off around 8pm, so, I suppose it's only fair that I'm awake now at nearly 3am and feeling like going back to bed is probably not an option any time soon. I did just take more muscle relaxers, since one of the biggest problems with lying in bed all day is the constant pain and spasms. But, still don't think sleep is coming for me any time soon.
Luckily, it's now technically Tuesday, which means only 2 more days of imprisonment. I am counting down the hours until Thursday morning when I can finally get some freedom- freedom of not having to drag an IV pump around with me everywhere, freedom to take a REAL shower, freedom to go home and see my babies and my real bed. Sigh... we're almost there. Considering I've been locked in here for 8 days already, I think I've held up fairly well overall. But even my patience appears to have limits.
They just switched out my chemo bag for the night... just one more bag to go before my freedom. Wish me luck... And sanity.
Luckily, it's now technically Tuesday, which means only 2 more days of imprisonment. I am counting down the hours until Thursday morning when I can finally get some freedom- freedom of not having to drag an IV pump around with me everywhere, freedom to take a REAL shower, freedom to go home and see my babies and my real bed. Sigh... we're almost there. Considering I've been locked in here for 8 days already, I think I've held up fairly well overall. But even my patience appears to have limits.
They just switched out my chemo bag for the night... just one more bag to go before my freedom. Wish me luck... And sanity.
Sunday, January 15, 2017
On the Mend
So the broncoscopy appears to have been successful, my left lung is functioning well again. I've been off oxygen for days and my stats are staying up. So that's good news.
The final decision was for me to do chemo first, so we started that a few days ago. Normally, I'm allowed to get my first 2 drugs in the hospital, and take the longer one home with a pump for 4 days afterwards. Unfortunately, because it was a Friday before a holiday weekend, they were not able to coordinate getting the pump to me in time. So I'm staying in the hospital for the full length of time (5 days) to get the chemo done. The up side is, at home I'm normally mostly on my own during the day, whereas here I've got 24/7 coverage and IV hydration to keep me feeling good. My pain regiment is pretty much perfected, and if any other side effects crop up, the staff are fast on hand to fix them. So this is probably the most comfortable chemo week I've ever spent, and I'm hoping my recovery time will be easier because of all the extra support as well.
It's Sunday today. My last treatment will finish up late Wednesday night (too late to discharge me), so I'll be released Thursday morning. In addition to the chemo, at some point they'll be administering my Superman Bone Juice, since we were due for that this weekend as well. Nice to get everything done at one time, anyhow. I'm sure there will be various follow-ups and whatnot in the next few weeks leading up to my next round of chemo, but we haven't discussed those in detail yet. For now, it's all about getting me through the next few days until Thursday. And as much as it's nice to have the staff here, I do miss my home, my bed, and my boys.
So that's it for now. As far as I know, we're planning on 2 rounds of chemo, then possibly some radiation, and then the drug that Dr Kang is looking into for us. As always, more updates whenever they arrive!
The final decision was for me to do chemo first, so we started that a few days ago. Normally, I'm allowed to get my first 2 drugs in the hospital, and take the longer one home with a pump for 4 days afterwards. Unfortunately, because it was a Friday before a holiday weekend, they were not able to coordinate getting the pump to me in time. So I'm staying in the hospital for the full length of time (5 days) to get the chemo done. The up side is, at home I'm normally mostly on my own during the day, whereas here I've got 24/7 coverage and IV hydration to keep me feeling good. My pain regiment is pretty much perfected, and if any other side effects crop up, the staff are fast on hand to fix them. So this is probably the most comfortable chemo week I've ever spent, and I'm hoping my recovery time will be easier because of all the extra support as well.
It's Sunday today. My last treatment will finish up late Wednesday night (too late to discharge me), so I'll be released Thursday morning. In addition to the chemo, at some point they'll be administering my Superman Bone Juice, since we were due for that this weekend as well. Nice to get everything done at one time, anyhow. I'm sure there will be various follow-ups and whatnot in the next few weeks leading up to my next round of chemo, but we haven't discussed those in detail yet. For now, it's all about getting me through the next few days until Thursday. And as much as it's nice to have the staff here, I do miss my home, my bed, and my boys.
So that's it for now. As far as I know, we're planning on 2 rounds of chemo, then possibly some radiation, and then the drug that Dr Kang is looking into for us. As always, more updates whenever they arrive!
Thursday, January 12, 2017
Bumps in the Road
Well it's been an eventful couple of weeks.
Around the time of our last NYC trip, I was feeling the tiniest bit of a coughing/pressure sensation returning. After the trip, it rapidly got worse, until we ended up doing an extra CT scan between visits. The scan showed that there was significantly increased growth to the mass in my chest. Because I felt okay, and we had a big scans & biopsies appointment coming up with Sloan-Kettering anyway, we noted the changes, but did not alter anything about my treatment at that time. For a few days, I actually started feeling better; my cough seemed to be clearing out, and I had more energy.
Then my cough rapidly increased, until Saturday, when I felt as though I couldn't breathe at all. I resisted going in to be seen and tried to just rest all day Sunday, but I was at the point that I could barely get off the couch because if I stood up I'd have a coughing fit. So Sunday night, we came to the ER at Johns Hopkins. They got us in quickly and started doing tests. When they got to the chest x-ray, we found the problem- my entire left lung had essentially collapsed. It was not moving any air at all in or out.
So they admitted me to the hospital, did some more tests, and determined that the first step was to do a procedure called a bronchoscopy, in which they would send a tube with a camera down into my lung to find out what the problem was, and try to fix it. They also did one more CT scan, and decided based on the results that the experimental treatment probably is not working the way we want it to after all. So currently I have stopped the trial drug, and Sloan-Kettering has me off the trial for now.
I spent Monday and Tuesday basically sitting propped up in a hospital bed trying to breathe. Being on oxygen and IV drugs helped a lot, and at some point on Tuesday part of my left lung actually opened back up on it's own, and I could breathe much easier. They did the procedure on Wednesday, and basically cut and cauterized some tissue out of the way to open up my airway and allow my lung to fill properly. There was one section that apparently did not respond entirely, but most of my lung is open now and my breathing is normal, so we're calling it a success.
As a minor side note, they did take tissue samples to biopsy. It's unlikely that the biopsy will reveal anything useful, but there is still a slim chance that we may see changes to the tumor's DNA as a result of the trial drug. I do not know at this time whether that will make a difference in the future treatments or not, since part of the drug trial involves not compromising the patient's health, and collapsed lungs are probably not something they like to see. So that's a different bridge that we will have to cross when the results come back in a couple weeks.
The next steps are to determine where we go from here with my treatment. Because my lung mass and spine have always been the two largest and most irritating sites, they are considering having me do some radiation treatment aimed at those sites first, to try to shrink the biggest problem areas quickly and directly. The second option is to go straight back to chemotherapy for a couple rounds, and then look at other options including radiation, immunotherapy, and other clinical trials. So it sounds like tomorrow/today (Thursday) my team is going to sit down and discuss the pros and cons of where to start, and I will almost certainly receive my first round of chemo or radiation before I'm discharged.
So, unfortunately things are not going quite as smoothly as we hoped they were. But we are staying positive and looking ahead at our options. Meanwhile, I'm comfortable, the staff at Hopkins are all great, and they've been keeping me well fed and hydrated, and I have a button I can push for pain meds if I need them. So right now I'm just trying to rest and recuperate, and we'll see what the next stage brings.
As always, thank you for your support and prayers. I will post an update when I have more information.
Around the time of our last NYC trip, I was feeling the tiniest bit of a coughing/pressure sensation returning. After the trip, it rapidly got worse, until we ended up doing an extra CT scan between visits. The scan showed that there was significantly increased growth to the mass in my chest. Because I felt okay, and we had a big scans & biopsies appointment coming up with Sloan-Kettering anyway, we noted the changes, but did not alter anything about my treatment at that time. For a few days, I actually started feeling better; my cough seemed to be clearing out, and I had more energy.
Then my cough rapidly increased, until Saturday, when I felt as though I couldn't breathe at all. I resisted going in to be seen and tried to just rest all day Sunday, but I was at the point that I could barely get off the couch because if I stood up I'd have a coughing fit. So Sunday night, we came to the ER at Johns Hopkins. They got us in quickly and started doing tests. When they got to the chest x-ray, we found the problem- my entire left lung had essentially collapsed. It was not moving any air at all in or out.
So they admitted me to the hospital, did some more tests, and determined that the first step was to do a procedure called a bronchoscopy, in which they would send a tube with a camera down into my lung to find out what the problem was, and try to fix it. They also did one more CT scan, and decided based on the results that the experimental treatment probably is not working the way we want it to after all. So currently I have stopped the trial drug, and Sloan-Kettering has me off the trial for now.
I spent Monday and Tuesday basically sitting propped up in a hospital bed trying to breathe. Being on oxygen and IV drugs helped a lot, and at some point on Tuesday part of my left lung actually opened back up on it's own, and I could breathe much easier. They did the procedure on Wednesday, and basically cut and cauterized some tissue out of the way to open up my airway and allow my lung to fill properly. There was one section that apparently did not respond entirely, but most of my lung is open now and my breathing is normal, so we're calling it a success.
As a minor side note, they did take tissue samples to biopsy. It's unlikely that the biopsy will reveal anything useful, but there is still a slim chance that we may see changes to the tumor's DNA as a result of the trial drug. I do not know at this time whether that will make a difference in the future treatments or not, since part of the drug trial involves not compromising the patient's health, and collapsed lungs are probably not something they like to see. So that's a different bridge that we will have to cross when the results come back in a couple weeks.
The next steps are to determine where we go from here with my treatment. Because my lung mass and spine have always been the two largest and most irritating sites, they are considering having me do some radiation treatment aimed at those sites first, to try to shrink the biggest problem areas quickly and directly. The second option is to go straight back to chemotherapy for a couple rounds, and then look at other options including radiation, immunotherapy, and other clinical trials. So it sounds like tomorrow/today (Thursday) my team is going to sit down and discuss the pros and cons of where to start, and I will almost certainly receive my first round of chemo or radiation before I'm discharged.
So, unfortunately things are not going quite as smoothly as we hoped they were. But we are staying positive and looking ahead at our options. Meanwhile, I'm comfortable, the staff at Hopkins are all great, and they've been keeping me well fed and hydrated, and I have a button I can push for pain meds if I need them. So right now I'm just trying to rest and recuperate, and we'll see what the next stage brings.
As always, thank you for your support and prayers. I will post an update when I have more information.
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