One of the downsides of a portacath being reinserted into me is that I now am back on prophylactic Clexane to keep me from thrombosing off my veins again. The dose is lower this time than the last time as I was on a treatment dose of 90mg per day (1mg/kg for the med geeks), I’m now only on 40mg per day (0.5mg/kg). This means every day, at the same time, I have to inject myself. Clexane is quite a ‘stingy’ drug, the needle itself is only as sore as needles will be, but the injecting process is the bit that is the worst. I also am slowly starting to accumulate bruises on my abdomen, an unavoidable side affect of injecting an anti-coagulalent into your fat.
In other news, I’m now officially starting chemotherapy on Friday, the 27th of November, which is 13 days away from the writing of this post, so the countdown of feeling ‘well’ is now on.
It makes me want to savour being well for as long as possible.
Well, I would love to begin this post with great news… unfortunately I will begin and end it with really bad news. Two days ago I had my oncology appointment and was given the results of my 3 month follow up CT scan after my last one showed an enlarged node.
The results are as follows:
- The existing enlarged node is now at least twice as big, from 9mm diameter to 23mm diameter
- There are multiple new nodes in the aorto-caval region, running up the aortic chain that are significantly enlarged. These nodes are particularly large vertically, up to 4 or 5cm in length which can be seen on the coronal section of the scan.
- One further small node of 4mm in the sacral region of unknown significance that was not there previously.
These results are pretty much as bad as it gets. This is all recurrence that has occurred within 6 months of the first line of chemo, which makes it even worse. This is considered a rather aggressive recurrence of the cancer, and the goal of further treatment is no longer cure (although still a very remote possibility), just elongation of my life.
So, the plan from here initially considered possible surgical resection of the nodes, but that has since been ruled out, as there is unlikely to be any benefit gained from surgery when weighed against the risks. Chemotherapy will restart again in the next few weeks, once I get a portacath reinserted. This will be a different regime than the last one, and I will loose my hair on this one and look like a proper cancer patient!!! (I had so many comments on how well I looked last time, I think it was cos I kept my hair). The portacath of course means that I will be back on daily prophylactic clexane injections since I am now officially a clot risk after the last IJV thrombosis.
The depressing part of all of this (apart from the fact that I’m looking at my eventual demise) is that I am probably the healthiest and best I will be right now, and its likely to be all down hill from here. I have been really appreciating all the support I have had from everyone over the last few days. The next phase of life will be interesting to say the least.
Can anyone tell I’m bored?….
This is just what i have to have this morning, excluding my clexane injection at 9am, and further tablets pre lunch, pre dinner, post dinner, and pre bed. About 25 plus tablets all up for the day.
A meal in itself really 🙂
I thought I would briefly explain what exactly the Internal Jugular vein is, and why I had problems with it.
The Internal Jugular Vein (IJV) is one of two major veins that drain the deoxygenated blood from the brain and head back down to the heart so that it can be sent to the lungs for oxygenation again. Each person has two IJV’s as well as two External Jugular Veins (EJV’s), and these are the main tributaries for blood to return to the heart from the neck upwards.
What happened with me was that my portacath, a tube that ran from my chest to the heart, makes it’s way to the heart by inserting in the IJV, then follows the IJV down where it joins the brachiocephallic (this vein drains the arm), which then joins the Superior Vena Cava, which then drains in the Right Atrium of the Heart. At the point of insertion into the IJV, this is where a clot started to build up. Clots generally can be caused by a number of things, but having foreign body in your blood vessel can be a cause, also, in my case, having cancer is also referred to a ‘pro thrombotic state’, as well as the chemo drugs I’m on [For the medical students: Capecitabine is pro-thrombotic, yet its dose-limiting side effect is thrombocytopenia.. any ideas?]. This all added up to a reasonable risk, one doctors and myself were willing to take, to causing a clot.
So the clot started, and once it starts, unless you take away the source of the clot, it will continue to grow. The major risks of having a clot there are mainly that fragments could break off, flow downstream and into the lungs, block off the lungs, which then stops me from oxygenating my blood and causing me to die from oxygen starvation. This is called a pulmonary embolism.
The portacath was removed with surgery to prevent the clot growing, and I was also placed on regular clexane injections in order to assist the prevention of further clot formation. The body will do the breaking down of the clot in its own good time.
And THAT is what last weeks drama was about! 🙂
Subsequent to thrombosing up my Internal Jugular Vein, I now have to go through this routine twice a day for 2 weeks, and the daily for an indefinite period afterwards, mostly likely about 4 months. The clexane is a low molecular weight heparin that will help the clot to not get bigger while the body slowly dissolves it.
WARNING – contains needles, bruises, scars, and fat, fat belly…. (all the better for injecting of course)..
So, I had the surgery last night, finally!!.. and this means no more nil by mouth dieting regime, which I am happy about. As of this stage, I’m yet to be discharged, but am currently at home because I manipulated the system to give me leave. I’ll be going back in to the hospital in an hour or so.
My portacath has been removed, and I still have a giant clot in my right internal jugular vein. The clot should hopefully slowly resolve over the next few weeks now that the source of it has been removed. This will be aided by the fact I have to inject myself twice a day for 2 weeks with clexane, also known as low-molecular-weight-heparin. After two weeks, the injections will continue once a day for about 3 or 4 months, or till the end of my chemo to help resolve the clot, and to prevent any further from occurring. The injection is just like an insulin injection, except way more stingy. The needle itself doesn’t hurt, its the stupid drug that causes local stinging for about 5 or 10 min after the injection.
So, at the moment, we are just waiting for the vascular team (again!!) to give me the all clear on the discharge. They weren’t projected to visit till sometime this afternoon, which is why we snuck home, so I could have a decent shower etc. In the mean time, I’m gonna be a complete cripple until this clot resolves. My neck is REALLY sore, so much so that I took morphine this morning to make it a bit more functional. I cant even get dressed without help, any sneezing, coughing turning of the head etc causes pain. Anything that may cause an increase of pressure on the carotid sheath, or the surrounding structures is bad news.
Also, apologies on the previous posts being out of order… it has something to do with the fact that I was posting them from my iPhone, it re-arranged them for some reason.
Quick update – I have now been dishcarged, so don’t have to go back into the hospital!! – Still a cripple though.