Here’s the email that I sent to my family and very close friends. Please read it, and then I’ll bring you up to speed on what has happened since:
Well, there has been a change in the plan. I apologize in advance, this is not good news. Take a breath, take a chair and then keep reading.
No clinical trial for me. As you know they did a whole series of tests to get baselines before they started the trial. Unfortunately, there were irregularities on the brain MRI. I received this news on Tuesday but, as usual, wanted to have a plan in place before I told anyone. I can’t say that I have one yet but at least I have a little more information.
I met with the neuro oncologist on Thursday afternoon. He said that they cannot be definitive in a diagnosis that the irregularities are metastases without doing a lumbar puncture. Without a positive result for cancer cells in the spinal fluid they don’t treat because they can’t know that this is not being caused by some other factor. Obviously the most likely cause is the cancer but, until they can know for sure, they can’t treat.
If the lumbar puncture comes back negative, they repeat it weekly and monitor me with MRIs for any changes. If it comes back positive, the treatment is whole-brain radiation treatment. The side effects of this are similar, but more mild, to the side effects of chemo. If I have the radiation, then I don’t do other treatment while this occurs. So, I am meeting with my primary doctor, Dr. Oza, on Monday to discuss all of this from a more holistic perspective because I am, of course, concerned about my lungs.
The good news is that this was caught very early – I had no symptoms. They only did the test because of the clinical trial so thankfully I planned to do that because otherwise we would have only known something when it was much further along. There are only two spots on the brain and, although I don’t know their size, this bodes well for treatment.
I still have lots of questions and very few answers. I don’t have the schedule yet for the lumbar puncture.
I apologize that I don’t have more information than that right now, and I apologize for dumping this on you, but I figured this may explain more moving forward and prevents me having to lie since I was supposed to start the trial on Monday.
I won’t lie and say that I have taken this one in stride. This one threw me for a very big loop. Still haven’t quite processed it, but the move has been a good distraction. I am happy that I am in my house – even though it’s only 70 percent ready. I am doing OK although I have more than my share of moments right now so bear with me while I figure this one out.
I am trying to focus on the positive and I ask that you do the same.
So, since then, I have had the lumbar puncture – which was not as bad as I thought it was going to be. A little bit of a panic attack which was not warranted I have to say. I was supposed to get the results yesterday. Supposed to because there was a bit of a screw up at the hospital – they were supposed to send the fluid to two different labs to get results but the fluid was only sent to one lab. So I got the results from hematology, which were negative, but those weren’t really the results that we were concerned with. So, I will now repeat the lumbar puncture and wait another week for the results.
In the meantime, because there continues to be growth in the lungs, I will likely have chemo to deal with that, pending any results from these lumbar punctures. They do them three times and only treat if it’s positive (as I said in my email). I don’t want to just wait and do nothing though because the other tumours continue to grow.
I’ve also had a sinus infection and may now have a chest infection — going to get a CT scan today to figure that out. I have to say that my primary team, doctors and nurses, is amazing and I am so thankful for them. Neuro-oncologists are clearly cut from a different cloth – that’s all I am going to say on that point.
I know this is a lot of information. I am trying to remain optimistic although at times, I have to be honest, it can be hard. This new development has thrown me and it hits me at various times during the day. My 40th birthday is in one month – here’s hoping for a celebration!
Editor’s note: We received another update from Elana this morning and wanted to include it here.
Well, you know the old saying, as soon as you plan something…
I was having some breathing issues over the weekend and so went on Monday to have my chest drained. I met with Dr. Oza who started me on steroids to try to bring some of the inflammation down as well since both the fluid and the mets were contributing to the shortness of breath and the coughing. He also wanted me to have an MRI because both of the lumbar punctures had been negative and he wanted to confirm any diagnosis with films before proceeding any further with the brain issues.
He scheduled me for chemo to deal with the lungs and I am going in tomorrow morning. He will be giving me cyclophosphamide which is not contra-indicated to radiation and is not processed by the liver, because those functions aren’t where they should be right now. I had the MRI and that was it for today. Dr. Oza told me he would email me the results of the MRI when he had them.
He called at about 8 p.m. — phones calls are never good news. I knew as soon as I picked up the phone. The mets in the brain, which are definitely cancer, have grown since the last MRI. Definitely not good news. So, I am still going ahead with the chemo tomorrow because I need to have some remediation for what is going on in the lungs. Prior to the chemo I will be meeting with a neurological radiologist in the morning to figure out a plan for radiation – looks like that is going to happen now.
The question is going to be balance moving forward between the brain and the lungs. I will definitely have one chemo treatment, which would not be more than every three weeks anyhow, so the question then is how many radiation treatments and how long before another chemo.
So, to answer everyone’s pressing question lately, I have no plans for my birthday and this is why. When you plan….
Leave a message of encouragement and support to Elana in the comment section below. To read all about Elana’s journey click here.