Dear friends and family, we thought this site might be a good way to keep everyone updated as we're both struggling to keep in touch with you all as much as we would like.
As you all know Johnny was sadly diagnosed with lung cancer in March of this year. Below is a brief summary of what's happened treatment-wise, though we've missed a lot out as frankly there's too much to write.
At diagnosis the cancer had spread from his lung to the bones, liver, lymph nodes and brain and as such the disease was classed as stage 4 which is advanced disease and treated with palliative intent - they would not attempt to cure the disease but treat johnny with the intention of extending his life as long as possible where his quality of life was acceptable, treating symptoms. His immediate treatment was radiotherapy to the head, spine, shoulder and sacrum which successfully shrank the tumours in the brain and reduced the bone pain significantly. He then had a course of chemotherapy (Cisplatin and Pemetrexed) which also successfully shrank the tumours in his liver/lymphs etc.
After 5 sessions of chemotherapy with positive results and having tolerated it relatively well, Johnny was referred to the Royal Neurological hospital as one of the vertebra in his lower back had been eroded to the point of collapse and was both causing a lot of pain, and also ran the risk of compressing his spinal cord. They admitted him for a day-procedure called a vertebroplasty where a type of bone cement is injected into the vertebra to stabilise it, it also often reduces pain dramatically, Johnny unfortunately didn't benefit from this side effect and was on a huge amount of painkillers. The pain management has been incredibly tricky, and johnny has repeatedly reached a ceiling with the morphine/oxycodone pain killers where he experiences toxicity and has to have all the meds reduced dramatically (often in hospital). We're still now wrangling with the pain relief medication.
On returning to UCH with the intention of recommencing the chemo (Pemetrexed maintenance - generally less toxic than the previous combo with Cisplatin which is limited to 6 doses), unfortunately according to the most recent scans the disease had progressed, tumours enlarged and further spread to the adrenal glands. Plan to start Pembrolizumab (Keytruda), a new type of treatment called immunotherapy which essentially prevents the cancer from hiding from your own immune system so your own immune system kills the cancer (rather than a chemo drug which acts directly to kill cancer cells, often killing healthy cells at the same time). This has only recently been approved here and as such is a bit of an unknown in terms of side effects etc, it doesn't work for everybody, but when it does it often has a much longer lasting and less toxic effect than chemo. Unfortunately after 3 treatments of Pembrolizumab, the latest scans have shown progression across all the organs and enlarged lymph nodes which, along with the fact that johnny is currently not feeling well at all suggests it's not working.
Where we are now: Johnny is currently extremely fatigued and dosed up on opiate pain meds which are making him sleepy, slightly confused and not really controlling his pain which is mainly in his shoulder and hip bones. We are waiting for the most recent dose of radiation to his shoulder to kick in which will hopefully alleviate the worst of his pain in his shoulder, we also have an appointment with the orthopedics team tomorrow to look at his hip - whether it is possible to radiate, or whether it needs pinning/stabilising to reduce the risk of fracture prior to radiation and whether Johnny would be strong enough to have the surgery if needed.
In the mean time the pain needs to be controlled with medication so we are in discussion with the palliative care teams at St Josephs (the hospice where johnny receives pain control treatment, physio and councilling), and UCH to decide on a course of action regarding pain medication - the options being methadone with possibly ketamine, or alternatively fentanyl patches (the two teams are discussing which is best next step). We then need to try to increase Johnny's weight and strength, particularly in his leg muscles which have weakened significantly due initially to long-term steroid use and more recently inactivity due to bouts of chronic fatigue/pain meds zonking him out.
Once these things have been addressed the next cancer treatment available is docetaxel, which is a more aggressive/grueling form of chemotherapy and we would need to get Johnny's strength up before he could embark on this.
So this is where we are, we'll try and update regularly,