Good Morning, what a lovely 02:50 it is (ok after edits it is now 0400). Wow what a great sleep of under four hours. I will be honest, the last two days I have got on top of how to get more sleep and have been the calmest/less manic since starting the “Dex journey“. Don’t worry, another post all about Dex is not coming up – I have other stuff to get out today.
Well you all probably have been thinking – “Come on Graham, you have not mentioned you have gone for your needle in the neck yet. I am sure you would not wait that long to get that done?” If you think that, then you are also probably thinking, “a week for results, I am sure the results must be in?”
Yes people the results are in and they are: (drum roll please 🥁🥁🥁)
The super short version
- The “Hot Lymph node” is cancerous (lung cancer).
- Going to chop it out – soon.
- Start on TKI drugs called “Alectinib” post surgery.
- Get on with stuff – start a new normal.
Now for the Ramble version, with full story telling mode turned on for your rambling pleasure. Or not – you choose. Ohhhhh it is like a choose your own adventure, but you don’t really get to choose as I have written the story. So as I have written it, it’s more like a blog then. Hmmm – yes – yes it is, it is just like a blog. Ohh I have given it a title/theme though – The Good, The Bad and The Ugly. I should say there is no cowboy/Western theme though, just so your not disappointed if your a Western fan – its just that those words work!!
Ramble Version
On a serious note – If you are not going to read everything (which is cool – who has time), skip to the “Ugly” bit at the end. It has important context about the future – ohh and did I put in a “how to treat Graham” at the end 🤔?) ohh maybe or maybe not???
The Good
The FNA (Fine Needle Aspiration) was a success. I should say it was a fine (as in really thin) needle, not some big sucker intended to suck a whole lymph node up in one go. So snaps to the medical world for using a term that makes sense.
The ENT (Ear, Nose and Throat) specialist with the most steady hand in the world, used an ultrasound and a needle multiple times and took 4 samples, 3 normal and 1 “Block”. I was offered an upgrade while laying down facing the wall (that sounds worse that it was – I was dressed with just my shirt off). I took the up-sell while I was there (the “Block” would cost more, but it would save me coming back later and also if there was anything in lymph node it would give the scientists in the lab more to work with).
As he confidentially did not mention how close to my jugular he was, I told him “I would be the stillest patient he has ever seen”. He returned the favour by taking a snapshot of each extraction on the screen he was using, so I could see after the procedure. As he is showing me, he laughed how close to my jugular he was and he did not want to stress me. I returned with “Why do you think I told you I would not move!! I knew how close you were!!”
Did I really? Umm not when I looked at the screen!!! Wow, no way, he was closer than I thought!
So on the screen it looked like my lymph node was the size of a 20c piece (ohh for non-Australian people that is about 2.8cm) – it was an enlarged view as the “Fine” Needle looked like a thick HB pencil in the 20c piece. The jugular you ask, ohh that looked about the same diameter as the lymph node. That pencil size needle was not very far from anything – a sneeze, cough, big swallow would have connected that HB pencil into the next 20c piece. Just saying from my understanding, anything in your jugular is not good – not even a little needle!!!
I was told they would rush the results, but the “Block” would take a week (later phone calls on the Monday revealed they would be back Wednesday and the Medical Oncologist booked the Mad Scientist and I, in for a chat to get the results).
The Bad
So we saw the Oncologist on Wednesday. Now previously I have not given him a character name, but let us call him “Teddy Bear”. Not because he is puppet and dopey like the “Ted E Bear” from the Strassman show (that would be bad). My Medical Oncologist just has some physical features that remind me of a Teddy Bear. Now we (ok so the Mad Scientist) picked the Teddy Bear as he is the best in his field for my type of Cancer – he is the go to guy in Perth for ALK+.
His delivery with the news was, as has always been, fact with empathy and clear pathways forward. What I want from Teddy Bear – I want fact based stuff with some good theories and willingness to be “novel” but not “crazy” (I won’t quote him, but we all agreed in the room with the a concept of “novel but not crazy”). Novel defined as “fresh, new, original” in our context, for those playing at home, not a bookclub thing where you bring a novel to talk about.
The result was that the Right Level 4 lymph node is cancerous and contains lung cancer.
Ok, so is that The Good, The Bad or The Ugly?
Well it is all three – It is “Good” – It is not Prostate Cancer that has spread (that stuff looks like it is gone and it is not something else); It is “Bad” – it is cancerous and thus the lung cancer is still in my lymphatic system; and It is “Ugly”- so we are going to chop that ugly M##### F##### out of my neck (coz why have cancer in your neck if you do not have to – I am getting good at this surgery stuff).
After all that, we will then start on a drug called “Alectinib”. Now this drug, is one of the arsenal we have to fight ALK+ Lung cancer. It is called a TKI (tyrosine kinase inhibitor) which targets just the ALK+ mutated cells.
Alectinib is on the PBS for what I have (the PBS can be very specific on what drugs are funded for what diseases). I do have to thank the tax payer (which I am one) making it $40.30 rather than $6805.20 every 28 days to keep this ALK+ from my body. Quick maths that is equivalent to about $88,465 per annum with no funding!!!
You may see me get passionate about the PBS, as there are some others drugs we know work for ALK+, that I may need one day, that are not on the PBS yet. I would like not to have to pay $100K a year for medications I need (and I do not feel others should either).
Do not read this next bit as me being “down and out” or “not his usual optimistic way” or that it is the “Dex talking” – it is not – I am calm and clear headed and so Zen right now.
The Ugly
Well in this context “The Ugly” is the truth about ALK+. This is probably why the Mad Scientist and I come across fairly calm about this stuff, as we have known the “Ugly” for a long while. It is not that we are in denial, it is that we have known the harsh reality of ALK+, since diagnosis last year.
There is no cure for ALK+ Lung Cancer
They do not know what causes it, other than knowing it DOES NOT appear to have any links to hereditary genetics, smoking, diet, external Toxins (think Radeon, Asbestosis etc) – it is found in both men and women, normally younger, fitter, “healthier” people. No rhyme or reason – it is just cancer being a prick picking on anyone. Our bodies start a process of mutating a normal gene which transforms into the Non-Small-Cell-Lung Cancer ALK+ (NSCLC ALK+).
Of those diagnosed, less than 5% of people find ALK+ prior to being Stage IV Lung Cancer (deemed medically terminal). I am one of the lucky ones to find it early. If it was not for the prostate cancer, I would have found it too late!!
Of that 5% that that found it early, most have gone to stage IV. There are some that have not – one person has progressed to Stage 3B and is still and has been for the last 8 years . I now fall into the Stage 3B category, as the cancer has not gone out of my Lung or lymphatic system yet – it is still contained and not spread elsewhere.
The harsh reality is that we have always known, ALK+ would come back and I would be on TKI’s for a long time/ever until they stop working or a “novel” approach is worked out.
The way the Mad Scientist and I view this is simple:
Treat this more like a chronic disease, rather than some cancer I am going to suddenly go down hill with and everyone starts talking in hush tones about how much time I have left. (ohh is this the “how to treat Graham part” 🤔).
The Ugly truth
Only my body is going to know how it is going to react to the drugs I put in it and the first one is starting in the next few months. I will be dosed up every day (twice a day) on a drug with some very possible crap side effects, but these do not seem nearly as bad as Dex (ahh the silver lining appears).
It appears from all our research, if I change some lifestyle stuff about, I should be able to make a pretty good “new normal,” probably one that most would not tell I have this cancer.
On the “Graham ending the ramble with a take away message” (no up-sells to have “block” done here today).
Let us all try to educate, talk, be open about Cancer. Cancer is not a dirty word in itself – it is a crap disease and it happens to crap loads of people. Everyone has been super supportive of me and I really appreciate it, but an interesting reflection I have seen first hand when talking to randoms.
Paraphrased for your enjoyment pleasure:
Me “I have prostate cancer”
Them “Ohh man so sorry”
Me “ I also have unrelated lung cancer”
Them “Do you, did you smoke?”
Even if I flip those two statements around and do it the other way, same response – Why?? (ahh something to ponder).
Let us not make anyone feel Cancer is their fault, or they caused it, or wish it on others – Cancer is just crap – anyone with a cancer diagnosis has enough crap to deal with and wants your compassion/empathy – probably not the other stuff.
I want to re-iterate, I do not feel that anyone I know has made me feel this way, it is purely that I am witnessing the bias first hand from new people, medical staff, randoms that don’t know me. I know my personal views have changed a lot since diagnosis.