See you in 40 years or so…

ren My best friend, my brother, we will all miss you.

Ren passed away just after 2pm 27th October 2013, age 45, surrounded by family.

Words fail me, its hard to see through my tears.

Rest In Peace!

Ren’s work is not over, I am but a mere shade of his brilliance, so I just hope I can continue to help others learn and benefit from Ren’s wealth of research.

Ren’s Brother (David)

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12 Months and Still Fighting

Update on Ren’s condition.

For those that have been following this blog will know that Ren has a will that is not surpassed by many. He was always extremely determined (some would call it stubborn) to achieve any goal he set himself to. Beating his little mutants is what he is still fully determined to do.

For Ren’s 45th birthday I flew over to surprise him, instead it was me that was surprised as to his physical deterioration. As I wished him a happy birthday, he asked for my help to get him admitted to hospital, as the pain was too taking its toll. The worst part was when he said “I can’t concentrate” and I could see that his mind was barely able to function, with all the toxins not being flushed out by his no-longer operational liver and kidneys.

Once admitted to hospital and after some blood works the dire news was given to us that Ren had hours/days/weeks to live. But then again what do doctors know anyway, he’s been told worse already and still fighting.

After months of searching for Methyl Jasmonate we finally were able to source some and I brought it with me. 3ml in a steam inhaler was administered yesterday. I am sure that Ren would have wanted to get tests before and after but with his condition, there was just no time to waste.

Methyl Jasmonate based on our research is a totally non toxic to normal cells, but really goes after and kills cancer cells. Since MeJA is volatile and a fragrance by definition, it can not be consumed orally but can be with the use of personal steam inhalers be introduced into the lungs. Recommended dosages from what we could determine was 3 mls and 5 times per month. I just wish we could have started this a lot sooner, but sourcing methyl jasmonate was much harder than we anticipated.

Yesterday was also a huge milestone, its been 12 months since he was 1st diagnosed with cancer, with the doctors there giving him 2 months or so to live. And still fighting.

Well done Ren, keep fighting!

Dave (Ren’s Favourite Brother) OK his only has one, but its true!

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ALPPS Non Event

On Wednesday I woke up in intensive care. I was sore, but I was alive was my first thought. My second thought, something is not right as I looked at clock and the time showed only 1pm. Also I did not feel sore enough for such major surgery.

Soon after my wife came in and told me that when they opened me up, they found 10 micromets, 1-2mm in size in the peritoneum and the ALPPS surgery did not proceed for that reason.I pretty much figured all of that out for myself, but was still devastated. I was warned about this possibility, but I did instruct the surgeon to proceed with surgery even if micromets were found. Again too much red tape and regulation it seems.

The positive outcomes were a drain to deal with the ascites fluid buildup, and they took 3 biopsy samples to send to dr. Nesselhut for future dendritic cell priming.

The next step I was offered was Removab injected peritonealy to try and deal with the ascites issue. I have been in a Czech Hospital for 5 days now, to recover and waiting to see if Removab can be ordered. (The food is terrible btw.) As it is not approved in this country this is proving to be more difficult than the local oncologist thought, so am considering a trip to Germany for this. I should know later today.

I have still not given up on ALPPS, just need to get creative.

The drain that was put in is making my life miserable too. It is seeping from the side which they fixed by putting in an ostonomy type bag over it. Not the most comfortable thing to do on a fresh wound. The drain line also keeps getting clogged all the time. Its draining about 2 litres each day, but they keep pumping IV electrolytes into me at the same rate so it seems self defeating at times. Bad news is that the fluid drained contains lots of protein as well and this is not as easy to replace.

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ALPPS Surgery Update

20131008-180821.jpgThe fluid buildup due to ascites is becoming unbearable, so I decided to go to hospital a day early in a hope of a solution. I got none. I was told that draining the fluid would do more harm than good and that the fluid would return within 24 hours. At least its not a barrier to my liver surgery which I feared the most. I spent the last week sleeping sitting up, but even that is now not possible and even the pain killers that I am on are no longer working. Luckily just one night to go.

I was checked into hospital today and had a series of various pre-op tests. So far it looks like the ALPPS surgery will proceed as planned. The fun starts at 8:30 am.

I had another meeting with the surgeon, and he like me realises that my health is now rapidly deteriorating and that this is my last chance. I stopped all german treatments in preparation for this surgery, and that has taken its toll it seems. He will do all he can and throw in a few non-standard extras. Firstly stem cell therapy to try and speed up the liver regeneration and chemo perfusion in the peritoneum to try and control the ascites after the surgery. Both very experimental and not typically done in this country. In fact I will be the first.

Its not all good news but. I just received an email from hallwang that my last stool sample is showing a massive candida infection. Just great. Nothing that I can do about it now.

The ALPPS surgery will be a lot more complicated in my case and is expected to take 6 to 7 hours. If it goes well, I’ll have 93% of my left lobe removed and the liver that is left, will need to quickly regenerate from the remaining 7%. No one knows what will happen when so much liver is removed, especially since with what I have now has started to fail already. I will be in coma for two days following the procedure, which is something I am looking forward to, as I have not had a good night’s sleep for weeks now. This is the first of 3 surgeries, and apparently the easiest and safest of the three. Comforting to know.

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Lifelines

20131004-133441.jpgLast month I was thrown two potential lifelines. Firstly I found a surgeon willing to do a colon resection using Dr. Karel Fortyn’s devitalization/devascularization method. I blogged about this procedure in the past where I went into a great deal of detail, but to summarise:

Devascularization involves firstly resecting the colon. The difference is that the veins feeding the tumour are ligated and both the tumour and the resected colon section are left inside. Starved of its blood supply, the tumour necrotizes. This stimulates an immune reaction capable of clearing distant metastasis. This reaction lasts several weeks.

I should add that the procedure has been banned in the Czech Republic, but is used to this day with great deal of success in veterinary since. The surgeon is taking a great personal risk, but believes in the procedure and continues to offer it to patients. I had a meeting with the surgeon and an operation was scheduled pending some tests.

The second potential lifeline came a few days later quite by chance. While I was in Germany, my wife came across a news story about a new revolutionary liver surgery that had just been performed, also in the Czech Republic. She sent my medical records to the hospital and a few days later she received a phone call that I could be a potential candidate for the surgery. When she told me, I realised straight away what it was. It was ALPPS (Associating Liver Partition and Portal vein ligation for Staged hepatectomy). I had my eye on this procedure for over 8 months and talked to several surgeons about it, but to be accepted into this trial was a big deal. Straight away I changed all my treatment plans in Germany to be able to meet the surgeon.

Although I do like the Devascularization surgery, its success is based on immune system response. This works best with low tumour load, so really the choice was simple, although ALPPS is a far more risky procedure. The plan is thus to try and reduce my tumour load in the liver, then follow it up by Devascularization in perhaps 6 months time.

The meeting with the surgeon went well, and the ALPPS surgery date was set for the 9th of October. The surgeon is able to operate because he found a 7% section of healthy liver tissue in the left lobe next to an artery. This is just enough to potentially work with, but I was told that this is a major surgery with 8% average mortality rate and that I am by far the worst case they ever operated on. I didn’t give it a second thought and signed up for the trial. In my case, it will be a 3 stage resection, where typically it is done in two. This means a total of 3 surgeries weeks apart. My chances of survival depend solely on how fast my liver will regenerate after the surgery. It can take as little as a week, but they had a case where it took 6 months. With the little liver I have left, a week means I live, a month or more and I don’t.

The operation is far from certain however. If any micro mets are found in the peritoneum when they open me up, they will not proceed. Also my health has deteriorated in the last 2 weeks and I developed ascites which may also put the surgery in question. I will find out on Tuesday.

At the moment I am just so furious. I consulted with two liver surgeons in Australia about this very procedure. Both said that they were familiar with it, and both told me that I was not a suitable candidate as I did not have enough healthy liver left. What they failed to tell me was that being familiar with the procedure meant that they knew about it, not that they actually performed it. So rather than to admit that they were not qualified to provide advice, they applied their knowledge of a standard resection I suspect. Damn their egos. Based on those opinions I stopped exploring the ALPPS option. That was my biggest mistake as I was in a much better shape for such surgery at that time. Now my liver is failing, I am turning yellow, have cachexia and ascites. But I still have hope that the surgery will proceed and that I will end up with a fully regenerated liver within 6 weeks. It just has to work.

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Hallwang Week

20131003-053324.jpgThis is a long story and I am starting at the other end, but Its the the most current and if I feel up to it, I’ll fill in the significant events leading up to this week later.

I arrived at the Hallwang Oncology clinic four days early, having cancelled TACE #5 with prof. Vogl. The reason for the cancelation was the preliminary acceptance into an ALPPS trial in the Czech Republic. (That in itself is one hell of a story, but more on that later.)

The plan for this Hallwang stay was simple. No liver directed therapies like Mytomicin or Removab, just a gentle week of liver and immune therapies to prepare my body for the complex liver surgery. What could go wrong right? (And the answer to that question, considering that it is me we are talking about, is pretty much Everything).

I arrived at Hallwang still very bloated, with high bilirubin levels manifesting in the yellowing of my eyes. I still had not recovered from the last Removab treatment and bilirubin had not been draining into the digestive system as it should. This causes pale yellow almost white stool and dark orange urine as the kidneys struggle to clear it from the system. I had hoped to get this fixed with liver support IVs at Hallwang.

The first day’s blood test showed high CRP (measure of inflammation) and because my liver had been swollen and sore as well, the Hallwang doctors deducted that I still had a liver infection and prescribed a three day course of antibiotics. I was not happy about that as the chronic bloating I now have I developed after the last round of antibiotics and it only just started to get better. As I expected the bloating got much worse again soon after the new antibiotic course was started and I was miserable.

I was given various drugs and preparations to treat the bloating symptoms, (with little help or relief), but what I really wanted was to find and fix the cause. I knew it had to be either a bacterial, yeast or fungal infection of some sorts. So I pushed for more tests. The results eventually came back and helicobacter pylori was found in the stool and blood. The treatment prescribed was a 7 day course of antibiotics. The doctors however ignored the Clostridium Defficile infection that had been found a few weeks earlier and giving antibiotics to treat the helicobacter could have been a recipe for disaster had it still been in my system, which I thought likely. I brought this to the Doctor’s attention, they did some more research and the antibiotics were changed to also account for Clostridium. You really need to be on the ball and question everything.

During my last stay at Hallwang, I had the silly idea of having my blood tested for heavy metals. This decision would now come back to haunt me. What they wound was a high level of Aluminium in my system. Almost ten times the normal upper range. I had no idea where this came from, but was told that with Australian patients they see this quite often and they believe it is in the local water. I personally think Australians in general use more antiperspirants than the europeans as is quite evident in any public place on a hot summer’s day. But whatever the source, a round of EDTA chelation therapy was recommended and I had it the next day.

The chelation therapy consisted of two large (and I mean large) volume infusions of EDTA and various minerals to replace those that the chelation will leach out along with the heavy metals. The first sign that something was wrong came during the night. With the volume of infused liquids, I expected to spend half the night passing urine, as I usually do after heavy infusion days. This time there was nothing. I woke up feeling much more bloated than before, but I did not connect the dots at that time.

The day after the bloating got much worse and my thighs swelled up as well to maybe 3 times the usual size. I weighed myself in the morning and discovered that I was 8 kilograms heavier than I should have been. I connected the dots then and had an ultrasound done. It pretty much confirmed what I suspected already. Ascites with at least 7 litres of liquid in my peritoneum. Combine that with the bloating and the swollen liver, I was one miserable pregnant whale. I can’t say whether this resulted from the chelation, or whether it is just my liver failing, but I don’t believe in coincidences. The treatment prescribed were diuretics to try and expel the liquid. That did not work, and the next morning I woke up (morning for me has become 3am), things were worse and I gained another kilogram of weight.

At this point I could not bare things any longer and a puncture was planned to drain the liquid. It seemed simple, stick a needle in, drain 6-7 litres of fluid and you end up with instant relief. The danger however is piercing the colon in the process. That would be bad, very very bad. With my luck, you can probably imagine already what happened.

Well it didn’t happen, but I got no relief either. The bacterial bloating I had also been suffering from had distended my colon. It was very close to the walls and there was very little space to insert the needle to access the fluid safely. The doctor had a go and punctured my abdomen, but got concerned (or scared) and aborted the procedure after the initial puncture yielded no fluid and she did not dare to go deeper. That was maybe a good thing, but I really needed a solution especially since my liver surgery is due in a week and the ascites put the surgery in doubt. I was given a horse dose of diuretics, but again these had little effect on the ascites and I continued to be in pain and miserable. I don’t like pain killers, but I had to take them daily now in order to get just a few hours sleep.

The following day things did not improve and I had to leave Hallwang as was due in the Czech Republic for surgery prep. I was given an elephant’s dose of diuretics and a urine bottle for what I expected to be a 4 hour drive to Plzen. This turned into a 7 hour nightmare which I will not go into. So this is where I am now, at a hotel in Plzen, the half way point on my road trip to Ostrava. It is 3am and the bloating and pain make it hard to sleep. I have a five hour drive still ahead of me, and am really hoping that the traffic will be better. The good news is that the diuretics did help a little bit, so I will continue to take oral diuretic tabs and hope that the ascites clear up on their own. I have 5 days left to get these under control.

Other treatments while at Hallwang included a stem cell injection to help my liver, hormones to try and reverse my cachexia and my least favourite, dexamethasone to help with the liver swelling.

To summarise, this time I am leaving Hallwang with a 7 day course of 3 different antibiotics to treat my gastro issues. I am taking strong diuretics daily. I am still bloated from gas, I have at least 5-6 litres of fluid due to ascites, my liver is swollen and painful. Also suffering from cachexia, having lost most of my muscle mass now. My bilirubin levels took another dive, reaching 3.2, the highest level I ever had. What’s next?

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Removab #4 Saga

20130928-115232.jpgAfter the last Chemoembolization disaster, my scheduled Removab treatment was put on hold. Hallwang refused to offer the treatment till I recovered from the last TACE and resulting complications. Hallwang wanted to send me home for 3 weeks, but considering the shape that I was in, I decided that I needed to stay.

Two weeks later I recovered enough and Removab was back on the menu. I was hoping for a smooth ride, but since this is me we are talking about, I should have known better.

The first cycle I was started on a 10 microgram dose. This was quite uneventful. I had no fevers and only side effect, I felt a little more tired than usual. The blood work the following day did not show anything interesting either.

For the second cycle, the dose was increased to 20 micrograms. This time things were quite different. I had a reasonable reaction, but nothing too serious. Sustained fever in the high 39 degree Celsius range and a headache.

The third cycle, the dose was kept the same at 20 micrograms, but this time again no physical reaction. Looks like I am building up immunity to the removab antibodies.

Up to now all pretty standard.

One of the side effects of Removab is pale stool and dark orange urine. This usually lasts for a few days and is caused by the liver damage Removab causes. Basically bilirubin is not cleared by the liver and little or no bile is excreted into the digestive tract, hence the pale stool.

And this is where my problems start. Its now been 10 days since my last Removab and things have not improved. My stool is still very pale yellow, almost white. My urine is a nasty shade of orange as the kidneys struggle to do the job that the liver can not. My bilirubin levels are 4 times normal range and I am turning a nice shade of yellow. The whites of my eyes are now the yellows of my eyes.

In addition, my liver has been very swollen and painful, making my life miserable.

I cancelled TACE #5 which was due yesterday and am back at Hallwang trying to put the liver back together somehow. Getting some stem cells to help the liver regenerate, and various liver support IVs like: Hepa Mertz, Hepa Baxter, Glutathion, etc.

Hope it helps.

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Posted in My Journey, Removab | 2 Comments

Defeat

20130918-123705.jpgAt some point you realize that there is no point fighting the inevitable, and that the only sensible option is just to give up. I reached that point last month.

If you have been following my blog, you know of my struggle to save my infected chemo port. Twice I thought I had the battle won, but always the infection returned. I had several severe septic reactions while accessing my port leading up to TACE #4, and that is when I had made the decision to finally give up the struggle and have the port taken out.

The mess with the last Chemoembolization just made this all the more urgent and the port was removed at the Freudenstadt hospital. I really missed the port. My veins were not in the best shape and it usually took multiple attempts to hit one with a cannula. Soon I learned which nurses were the most skilled at this and I started to seek these out. Ok, its only needles, but I have this psychological phobia where these are concerned. Though I must admit, I managed to sit through 3 failed attempts which 3 months ago would not have been possible without fainting or throwing up. Progress at last?

Without a port some of the IV’s like ALA or Vit C are quite harsh on the veins and it was actually quite painful as these went in.

I got a new port a week later and once it healed I was back in business. After three weeks of cannulas it was quite a relief. Now just to make sure I don’t get another infection. I have become quite anal about following strict aseptic procedures while accessing my new port and use extra antiseptics. I think the nurses will not like me very much, as no one likes to be told how to do their job, but tough. I am not going through this again if I can help it.

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TACE #4 Aftermath

20130910-152448.jpg
I have not updated the blog for quite some time and when this happens, I usually have a good reason. The reason is however almost never good and this time was no exception. TACE #4, although initially quite painless, was so far the worst. I lost all feeling in my right leg (other than the intense pain) for several days, but this was the least of my problems.

TACE or Trans Arterial Chemo Embolization had become almost routine for me, however the last treatment really brought home the realities of this procedure and I am now acutely aware of just how serious and dangerous it can be. TACE can kill you and apparently it almost did.

So lets continue the story. I left the Frankfurt hospital at closing time for day procedures, just after 6pm. My right leg was totally numb, all muscles were cramping causing a lot of pain and I could only just wiggle my toes. A wheelchair was the only way I could get around. The next two days things were not much better. Lot of pain, the leg was always cold, indicating poor circulation and no feeling due to possible nerve damage. Luckily it slowly improved over the next two weeks. I can now walk again, though not very far without running out of energy, but I expect to recover fully in the next 2 weeks (Just in time for my next TACE). But like I said, the leg was the least of my problems.

Two days after TACE I was at the Siebenhuner clinic, where I suddenly developed a very high fever. Feeling of cold and Uncontrollable shivers, reminded me of a septic shock type reaction I experienced before when accessing my infected chemo port, however I was not using the port. This was combined with hypoglycaemia type symptoms, which 2DG may have been responsible for as I had a higher dose than usual (5g IV) where as I usually take 1g three times daily. I was in a very bad shape and spent the rest of the day at the clinic trying to recover enough to be able to make the 3 hour trip to the Hallwang clinic where I was due that evening.

To cut a long story short, I arrived at Hallwang at 9pm. A new young doctor was on duty as I came in. When she saw me, she insisted on starting a Saline IV straight away. I was dead tired and just wanted to sleep, but agreed and they pumped a liter of saline into me. My blood pressure was just 90/50 which for someone who suffers from high BP is low I admit.

The next day, a battery of blood tests was done. The results were not good. My CRP was over 300 indicating massive inflamation, most likely due to an extensive infection. I was started on IV antibiotics 3 times a day for the next 7 days.

Next issue was my immune system. I had none to speak off. It was pretty much wiped out. The infection was the result, but there was more to come.

My Red blood cells were fried and I was anaemic. I received two bags of whole blood in the evening and was hooked up to drips till 1 am.

The following day, my platelets fell to 22 where as the normal range is (140-400). I was told that it appears that my bone marrow had been damaged. The doctor prescribed a platelet transfusion.

To make my life even more miserable I developed the mother of all cold sores. I do suffer from cold sores on rare occasions, but I have never had anything like this. Massive cold sores filled the inside of my nose, invaded the tip of my nose and fully covered both of my lips. I looked like a freaking duck. Later both lips cracked and were covered in bloody scabs. Not a pretty sight. That’s what happens aparently when your immune system stops working.

Diarrhoea came next and stool tests later revealed a particularly nasty bacteria clostridium. This type of bacteria often produces a toxin. Luckily the toxin was not detected so I did not have to be quarantined. Not a nice bacteria to catch, as according stats it kills 14000 people each year in US hospitals alone. This was a minor annoyance compared to everything else, but worse was still to come.

The following day I woke up to discover that I was pregnant. I kid you not. I looked just like my wife during her 9th month of pregnancy. It turned out to be a combination of three things. Firstly bloating due to gas trapped in the intestines, courtesy of the clostridia bacteria I assume. Secondly my liver was extremely swollen and was 20cm larger than normal and worst of all, an ultrasound showed liters of fluid in the peritoneal cavity, indicating that my liver was in serious trouble. (I knew that already from the blood tests.) I struggled with this for almost five days. I had trouble eating as my stomach was compressed and I felt sick most of the time. My weight increased to 59kg, but dropped to an all time low of 51kg after the swelling and fluid finally went away. For my height that is not good.

The resident Hallwang doctor told me that had I arrived two days later, I most likely would not be around to write this blog entry. Today I am much better and I must say that Hallwang did a pretty good job of putting me back together. My biggest challenge now is to recover the lost weight.

So what went wrong??? Dr. Kopic went over prof. Vogls TACE report and I think we found the reason. Prof. Vogl added a new chemo drug into the chemo embolization cocktail mix. Gemcitabine joined Oxaliplatin, 5FU, Mitomycin and Avastin. He did not skimp and used double the standard dose. I am sure he meant well in light of my aggressive cancer, however it seems he fried my immune system and damaged my bone marrow in the process. Everything else just snowballed there after. Whether it was the extra chemo dose, or whether this time the embolization failed and the chemo leaked out of the liver, I don’t know, but suspect the latter. The only up side from all of this, my cancer markers keep going down.

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Posted in Chemoembolization, My Journey, Treatments | 2 Comments

TACE #4

20130827-085917.jpgDue to my liver pain and swelling I brought forward my next TACE (Trans Arterial Chemo Embolization) procedure and last wednesday I found myself yet again on Prof. Vogl’s (a.k.a. Dr. Pain) operating table.

But I get ahead of myself. I started my current tour in Prague at Dr. Hajduk’s clinic. There I had few IV’s, ozone and replenished my supplies of trypsin and chemotrypsin. He’s a great doctor, very open minded. He however believes that I am doing too much at the same time. Really? I don’t think that I am doing enough.

Next stop Dr. Siebenhuner in Frankfurt for local hyperthermia in preparation for TACE, some liver directed IV’s and a battery of blood tests not done anywhere else.

Now back to Dr. Pain. This month one of his MRI machines was broken so I started TACE with no initial MRI. I felt a little weird about that as I assumed that the MRI gave Prof. Vogl information about tumour growth and where to target the chemoembolization. He assured me that he can see the active areas from the live angiogram. He decided to do the right side of the liver. He was right, the right side had been giving me a lot of problems lately, but so did the left.

Prof. Vogl was as efficient as ever, but I managed to distract him for a few minutes just after he gave me the anaesthetic injection. This gave the injection time to work, and for the first time I did not feel the cut as he sliced open my femoral artery a little later. :) My distraction was the IV drip not working, so I don’t think that I’ll be able to use the same trick next time. Still a little victory as usually he gives the injection and cuts straight after.

What surprised me the most, was the lack of pain during this procedure. It still hurt after the chemo was injected, but not enough to require pain medication. In a way I was disappointed as I missed the morphene feeling. When I commented on this change, prof. Vogl said that the treatments look like are working. Hopefully good news.

But lets not forget that this is Dr. Pain that we are talking about and I was sure that things just can’t be this easy. I was right and this became my worst TACE to date. Shit started to hit the fan later in the recovery room.

First I lost all feeling in my leg and could not even move my toes. Then the pain came. Incredible pain. It was a weird feeling, a leg that felt totally numb to the touch, yet every muscle fibre caused excruciating pain. Prof. Vogl came to take a look and concluded that it was most likely from the anaesthetic injection. I did not believe that, but he checked the pulse in the groin and concluded that it was all normal. He’s a hard man to argue with.

I spent the rest of the day in the day recovery room in pain till they kicked me out at closing time. By that time I was at least able to wiggle my toes, but the leg was still pretty much dead. I left the hospital in a wheelchair and was very glad that this time round I had my parents with me to help.

The problem persisted for several days and I spent a lot of time in wheelchairs. Slowly things improved, however even almost a week after the procedure, the leg feels like its on novocaine, its always much colder than the other and I can’t walk more than a few meters without running out of energy and needing to take a rest. Still its getting a little better each day, so that is a good sign.

Unfortunately as the left liver is giving me problems still, I am seriously considering another TACE in the very near future. I know, I am a glutton for punishment.

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Posted in My Journey, Removab, Treatments | 2 Comments