To Hell And Back

20130501-175216.jpgShortly after breakfast, I left the Hallwang clinic for Frankfurt. It was a three hour drive, and I was going for an appointment with Prof. Vogl to have my first chemoembolization. I spoke to the hallwang doctor, and patients who had the procedure already and all painted a very rosy picture of a simple and painless procedure. I was assured that I would be fine to drive back afterward. Seems I am again the exception rather than the rule.

The Germans are very efficient, I give them that. 5 minutes after I arrived I was prepped for the procedure and 20 minutes later I was getting an MRI. After the MRI I was taken into the theatre where the chemoembolization was to take place.

The procedure started with local anaesthetic to the groin area. Then far too quickly, the obviously very busy and impatient prof. Vogl made a small incision to expose the femoral artery… before the anaesthetic had a chance to work. But no great drama.

Next the catheter was inserted into the artery and slowly threaded all the way up into the liver. Quite interesting to see the procedure on the computer screens. Once in place, the chemotherapy agents were injected, followed by an injection of embolization agents to seal off the hepatic artery to ensure that the chemo stayed inside the liver. Overall the entire procedure took maybe 15 minutes. (This is important, if getting chemoembolization done elsewhere, ensure that the embolization is temporary. Some older procedures block the veins permanently and you do not want that.)

5 minutes after the chemicals went in, things started to get bad and I started to feel pain in my liver. Ok, the liver feels no pain, as it has no pain receptors, but the sack enclosing the organs does. 10 minutes later the pain was excruciating. In fact I have never felt pain like this. I have had some very extreme liver pains in the past, but this was at least double in intensity. I was shaking, sweating profusely, my blood pressure jumped to over 200 and I was clutching the bed rails in agony. If I had a choice of a quick death at that time I would have been very tempted to take it.

It reminded me of my daughter. When she was about 3 years old she touched a hot light globe and burn’t herself quite badly. At first she would say nothing and did not cry. She was very brave probably not wanting us to find out what happened. But she was acting oddly, and when we asked what was wrong she told us and finally broke down. She would whimper ‘It hurts, It Hurts, It Hurts….’ but in Czech: ‘To boli, To boli, To boli, …’ It broke my heart to hear her. I found myself shaking, soaked in sweat, gripping the bed rails whimpering just like her ‘To boli, To boli, To boli,….’. Must have been quite a sight for the nurses, though I guess they just attributed my ramblings to the morphine.

Yes, they pumped me full of morphine, but all that did was to take the edge off a little, but overall not a great difference. Next was a CT scan. Trying to get on the CT machine in my current state was another experience and took a lot of will power.

After the CT, I spent three more hours in the recovery room in agony, before the pain subsided enough to be at least tolerable. I was then taken for another CT scan and discharged. At this point I started to regret driving myself to Frankfurt (to save 500 euro), as I now had to drive 3 hours back to Hallwang. I was considering finding a hotel in Frankfurt, but rather than dealing with this I just decided to grind my teeth and drive back to Hallwang. (How did I get discharged you ask? Well I kinda lied a little about how I really felt.)

I don’t know what the pain meant, but I had a look at the two CT scans taken just 3 hours apart. The difference was amazing. White rings surrounded most of my liver mets, which I was told was a physiological reaction to the chemo. In other words, visible cell death just three hours after the procedure. I had more tumour shrinkage in 3 hours than I had in 6 months of systemic chemo. That’s encouraging and almost worth the ordeal. 🙂 Another good news is I am not experiencing any of the typical chemo side effects like oxaliplatin neuropathy, nausea etc., even though the doses used were many times higher than would be possible with systemic chemotherapy.

Since I am writing this, I guess I made it to Hallwang, though I am not sure how. I got in at about 9pm, but it did not end there. I spent most of the night curled into a foetal position on the shower floor. The hot water providing a little relief. (I felt a little guilty for using up so much water, but there was no bath tub.) The pain was still bad and I simply could not sleep. It was not till about 7am that the pain started to pass. By noon I was back to normal and they hooked me up to more IVs. Just like any other day.

I can now truly say that I have been to hell and back and after this, I am ready for just about anything. Unfortunately I am booked in for another chemoembolization session 3 weeks from now, and I am not sure whether I am ready to go through that again. But I guess I have no choice.

The aim of the inital chemoembolization is to break down the tumour structures as much as possible so that the Removab antibodies can reach and tag the epCam positive cancer cells which then the immune system attacks and destroys. To help this process, billions of cultured white cells I will also have injected at another clinic. Removab will go in within the next 3 days. Unlike chemoembolization, most patients that had Removab report severe side effects lasting several days. God help me.

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About Ren

I have been diagnosed with stage 4, metastatic colorectal cancer in October 2012, 3 days after my 44th birthday. There is no cure, but I am determined to go down the road less travelled to find one. I have setup this blog to document my journey and hopefully help others in the process. My view is that if there is a cure, it does not lie with traditional chemo, but with the immune system. Time will tell.
This entry was posted in Chemoembolization, My Journey, Treatments. Bookmark the permalink.

6 Responses to To Hell And Back

  1. Rona0909 says:

    Hi Ren, I’m a friend of Peter’s and was at Hallwang. Thank you for posting about your experiences and your journey. I don’t know if you are on Removab yet, but reactions vary. I only had a high temp and the shivers and a low-blood pressure which was all managed well. I felt generally well and even went down to a party the day of one of my Removabs [not a good decision though!]. The only hardcore effect was the liver enzymes which went sky-high and meant I was told not to go for long walks etc. So don’t worry – it will all be well. If you don’t feel well on Removab, tell the doctors and nurses and they will do something – do not suffer in silence. Good luck and best wishes

  2. Rona0909 says:

    or tell Manuela and ask if she can do something about the pain. I couldn’t sleep with my leg straight out for a while which shows that there was something happening in the muscles.

    • Ren says:

      I had an ultrasound done and apparently During the chemoembolization procedure the muscle was damaged. I was thinking it could have been a blood clot for a while. ahh well these things happen though not very often I was told.

  3. Rona0909 says:

    That’s tough. I hope your muscle heals soon and well. Is that nothing the doctors can do about the pain? Maybe Manuela can do something to help support the healing. Or try acupuncture. You must have a high pain threshold to put up with so much. And by the way – do not go uphill walking (and that includes the hill leading to Netto’s!). Or horseback riding.

  4. Pingback: Hallwang Clinic #12 – trans-arterial chemoembolisation (TACE) | BisforBananasCisforCancer

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