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..
Tuesday, February 21, 2017
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.
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