Lauren's first roommate was a 20 year old Leukemia patient. She was about four months into her two year treatment plan. Her mom was a plethora of information and I am not sure I could have made it that first week without her. The girl was a huge help for Lauren too. She showed Lauren her broviac and we talked about what it felt like and how sore she would be the first couple of days. I think she made Lauren feel more at ease in the worst possible situation. Unless you are on the same protocol, chances of seeing a roommate you once had are slim. So when we didn't see her for a few months I thought nothing of it, until Lauren was admitted to the immuno-compromised wing of the oncology floor for IV pain management with a zero ANC. When I first saw her mom, I was actually happy (I was naive back then and didn't think that not seeing someone might mean the worst possible scenario). After we hugged, she pulled me into the kitchen and told me that her daughter had a bad reaction (neuro) to chemo and she was completely immobile, unable to walk, talk, eat. The good news? She was still alive. She may make a full recovery after months and months of rehabilitation. I saw the girl's mom about six months later, when Lauren was getting her broviac taken out and I was hanging in the cafeteria waiting. They were being discharged after over seven months straight in the hospital. I was so happy for them. She was actually walking on her own now and making slow but good progress. I didn't bother asking her about prognosis. It didn't matter. She was alive and going home.
What happened to this girl scared the crap out of me and it has haunted me for the last two years. What if the next protocol we decide to give Lauren does the same thing to her? Exactly how much can one's body take before it finally gives in? Have you ever actually looked at the ingredients for some of these chemotherapy drugs? The suffering they go through while this poison courses through their body. I struggle with the treatment decisions we've made, I've made. Am I being selfish putting Lauren through conventional treatment? Watching your child suffer is the worst possible thing in the world a parent can experience. Your only reason for living is to take care of this child and yet, there is nothing you can do to make them better. Not having control of the situation is unbearably torturous. I have learned over time that I have to let go of what I can't control, but it seems as of late that there is NOTHING in the world under my control.
We got the worst possible news we could get last week. Lauren's tumors are growing, during treatment. Well, one of them is still growing. She also has a new spot that was never reported. So where she stands now is spot #1 and #2 are stable nodules (both in the left lung). Spot #3 has grown a couple of millimeters (located subpleural; right lung) and the SUV has risen and now this new tiny spot that was missed over and over at the base of her right lung. While Lauren's cancer has never appeared to be super aggressive, it is still very smart and continually gives us the finger as it grows stronger and more resistant to what we throw at it. Unfortunately, that is what cancer does.
We met with the conventional team (Onc #1) on Thursday. I had really hoped for more options but as it stands, one was presented. It's a Phase 1 clinical trial at UCSF using Topotecan, Cytoxan (a nitrogen mustard alkylating agent) and Rapamycin (an immunosuppressant drug). While it is a phase 1, all of these agents have been tested separately, so the "1" just means that they are testing these as a new combo. Ironically, when Lauren relapsed the first time in November 2011, low doses of Rapamycin was discussed with her Naturopath. The plan would be to get a few cycles in, repeat imaging to measure response and if there is a response, surgery to remove the remaining nodules, though there is some discussion on whether surgery on both lungs is an option. Theoretically, we'd hope that the remaining small stable nodules would be shrunk by the protocol, only leaving the larger one to remove. The process of removing them is what we are not all on the same page about. The conventional team would love to cut them out, while Lauren's Naturopath thinks that radio frequency or cryo-ablation is a better less invasive option, even though surgically they would be going in thoracoscopically.
The CAM team presented a much different plan. Barring any complications with insurance authorizations (and disagreements from the conventional team), we would take Lauren to Kentucky, where a skilled Interventional Radiologist would ablated the lesions using radio frequency or cryo, while at the same time, injecting the lesions with either BCG (a tuberculosis vaccine) or Iscador. The purpose of the injections would be to further push a response from Lauren's natural immune system. The RFA or CA would push that type of response, where surgery would not. Then add the injection and BAM! her own body's natural defenses should kick in. If we got clear margins, she would be started immediately on the TM (lowers copper) and most likely Iscador sub-q injections. We would need her to stay at a NED status for at least six months (before that sigh of relief comes), but ideally for two years. If at any point during those two years she relapses, then all bets are off and we are back at square one. The good news is that the doctor in Kentucky has had really good results with previous patients; some out as far as 10 years with NED. It's a really promising idea, but I am so damn afraid that insurance will nix this one quickly and from what I understand, the treatment out of pocket is around $15k. How the hell do you put a price on the health of your child? I'd sell everything I owned if it meant it would cure Lauren's cancer. I know every other parent would say the same thing. If insurance rejects this plan, we could still do the ablation procedure using a local doctor (or someone from the Bay area) without the injections (although they are really key in this treatment plan).
So, here we are again. This will be Lauren's FIFTH line of treatment but I am happy to still have options. Some families I know do not have that luxury and it breaks my heart. My first step will be calling the insurance to find out in a general way if they will cover ablation for pulmonary lesions/metastatic disease. Without knowing the answer, we cannot move forward. In addition, I am waiting for more information from Lauren's ND about a test that can be ran prior to starting the Topetecan, as it's sister, Irinotecan has been known to certain people with a specific variance in their enzymes to be *more* toxic to a person without this variance. It's still unclear if this is a problem with Topetecan. Hence, the opening story ... my fear of a toxic reaction she may never recover from. And the side effects list from the Cytoxan are crazy. It in itself is a carcinogen. Again choosing the lesser of two evils isn't easy at all. So the very chemo we use to save her life may cause a secondary cancer. Oh, that's just great (said as sarcastically as humanly possible). Sigh.
So, do we choose the red pill or the blue pill?
peace and <3
-cherri
