First Scans In!

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!

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!

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

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!  

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!

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.

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..