Slow and steady
A lot has happened, despite the happenings being baby steps. Our first piece of good news is that my C3 is stable! Hooray! The MRI showed "healing" and no encroachment in the epidural space (read as: the threat to my spinal cord is under control). The vertebrae is no longer fractured and my c-spine is stable when flexed (I did a flex test via x-rays to make sure). The neuro surgeon, who was very adamant about me wearing the neck brace AT ALL TIMES (even sleeping), looked me in the eye and said "I just don't see what we saw in your last MRI. Call me if you start having pain." And that was that. So with confidence, I can continue not wearing the neck brace and breathe a little easier.
And I am breathing a little easier. This week we also had another ENT scope appointment of my airway. It's always nice to hear happy surprise in your doctor's voice, especially when you have cancer. They didn't expect to see much change in my airway but they did. Shortly after my last post I was given a steroid dose pack to calm the inflammation in my airway, which is what the rad onc was suspecting was causing me to not have my voice. The steroid dose pack was a 6 day taper, starting with a highest dose and working down to the lowest dose. On day one, after the very first dose, my voice started to return. I was SO happy. It was really hard to not use my voice too much as it was coming back. Honestly, I didn't even try not to use it. I was just so happy to have it back I was talking as much as possible. Thus, this latest ENT appointment was post the steroid pack, and I am honestly breathing easier. I have had my trach capped (closed) for weeks now. All breathing is happening through my nose and mouth now. I *almost* feel normal ... *almost* forgetful of my trach. So it begs the question, when can it come out? Not for a couple months still. They want to see stability for a few months so they can be confident about taking it out. Evidently it's a bit harder to put a trach back in once you've had one. OK FINE. I'll wait, because I certainly don't want it put back in. I have an MRI for my cricoid on May 12th to check it out and see what further progress we get with a little bit more time.
And speaking of healing ... I'm waiting to start cycle 2 of Ibrance. During my 7 days off the drug I had a blood draw to test my white and red blood cell count, and a host of other things ... currently, at the end of my off week - which is designed into the regiment to allow your body to bounce back from the effects of the drug - my absolute neutrophil count is at .64. Under 1.0 and you're at serious risk for infection and the docs worry about your body's ability to fight off an infection. So ... all of this means that my body is responding to the drug ... yay! It also means that we need to wait another 7 days and test again before I can start cycle 2 of the drug. If my counts this Thursday are equal or greater than 1.0, I can start cycle 2. My doc is also going to lower my dose of the drug to 100 instead of 125. It's a window she she says ... a window of efficacy where the drug does its thing but not so much as to seriously hurt my body (my bones specifically since white blood cells, etc. are created in your bone marrow). Balance ... finding balance is what we need.
She also said the MRI of my C3 is a good report. The fact that it's showing healing is encouraging because she says that they don't see healing in one area and "bad" things happening in other areas ... which is good. It makes me hopeful that the other areas that didn't get radiation are healing as well from the systemic meds. In late May, I'll have another full-body PET CT of everything to see if this is the case. Fingers crossed for that one for sure.
I keep reading stories about women who are living - and living well! - 10, 15, 20+ years since being diagnosed with metastatic breast cancer. It's encouraging and inspiring, as well as a lifeline. With some of the breakthroughs that are in the news lately - the understanding about how cancer cells metastasize, how they interact with the immune system, the advances in immunotherapy, the Cancer Moonshot initiative - all of these breakthroughs continue to build up hope that new, more effective treatments are coming, and coming soon.
And I am breathing a little easier. This week we also had another ENT scope appointment of my airway. It's always nice to hear happy surprise in your doctor's voice, especially when you have cancer. They didn't expect to see much change in my airway but they did. Shortly after my last post I was given a steroid dose pack to calm the inflammation in my airway, which is what the rad onc was suspecting was causing me to not have my voice. The steroid dose pack was a 6 day taper, starting with a highest dose and working down to the lowest dose. On day one, after the very first dose, my voice started to return. I was SO happy. It was really hard to not use my voice too much as it was coming back. Honestly, I didn't even try not to use it. I was just so happy to have it back I was talking as much as possible. Thus, this latest ENT appointment was post the steroid pack, and I am honestly breathing easier. I have had my trach capped (closed) for weeks now. All breathing is happening through my nose and mouth now. I *almost* feel normal ... *almost* forgetful of my trach. So it begs the question, when can it come out? Not for a couple months still. They want to see stability for a few months so they can be confident about taking it out. Evidently it's a bit harder to put a trach back in once you've had one. OK FINE. I'll wait, because I certainly don't want it put back in. I have an MRI for my cricoid on May 12th to check it out and see what further progress we get with a little bit more time.
And speaking of healing ... I'm waiting to start cycle 2 of Ibrance. During my 7 days off the drug I had a blood draw to test my white and red blood cell count, and a host of other things ... currently, at the end of my off week - which is designed into the regiment to allow your body to bounce back from the effects of the drug - my absolute neutrophil count is at .64. Under 1.0 and you're at serious risk for infection and the docs worry about your body's ability to fight off an infection. So ... all of this means that my body is responding to the drug ... yay! It also means that we need to wait another 7 days and test again before I can start cycle 2 of the drug. If my counts this Thursday are equal or greater than 1.0, I can start cycle 2. My doc is also going to lower my dose of the drug to 100 instead of 125. It's a window she she says ... a window of efficacy where the drug does its thing but not so much as to seriously hurt my body (my bones specifically since white blood cells, etc. are created in your bone marrow). Balance ... finding balance is what we need.
She also said the MRI of my C3 is a good report. The fact that it's showing healing is encouraging because she says that they don't see healing in one area and "bad" things happening in other areas ... which is good. It makes me hopeful that the other areas that didn't get radiation are healing as well from the systemic meds. In late May, I'll have another full-body PET CT of everything to see if this is the case. Fingers crossed for that one for sure.
I keep reading stories about women who are living - and living well! - 10, 15, 20+ years since being diagnosed with metastatic breast cancer. It's encouraging and inspiring, as well as a lifeline. With some of the breakthroughs that are in the news lately - the understanding about how cancer cells metastasize, how they interact with the immune system, the advances in immunotherapy, the Cancer Moonshot initiative - all of these breakthroughs continue to build up hope that new, more effective treatments are coming, and coming soon.
This is fabulous news, Melissa! I am so pleased to hear that you are getting positive responses and good news. whew. KEEP FIGHTING!! Hugs, Kathleen
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