A Decision Point For The Next Liver Treatment

Louise was scheduled for her third round of TACE today but her bloods have continued to drop. Her platelets are 10 000 as we speak. A normal platelet count ranges from 150,000 to 450,000 (platelets per microliter of blood). So her platelets are 140 000 short of where we would like them to be……..

TACE or RCT?

Lou has had two rounds of TACE (Trans-Arte­ri­al per­cu­ta­neo­us Chemo-Embo­li­sa­ti­on). She’s scheduled for four.

Leaving for Germany I thought TACE was the same as RCT (Regional Chemotherapy). TACE is definitely a form of RCT but they are administered and managed differently.

I believe the TACE we have done so far has been of benefit. After two rounds (half the liver each round) Lou has had some positive response. Her Pleural Effusion (water in the lungs ) has slowed. Her tumour cell activity has also decreased, which means some aggression has been removed from the liver tumour metastasis. As you know, the metastasis in young triple negative breast cancer patients is angry as all hell.

The decision junction we’re at now is TACE or RCT? While there are several different forms of RCT, the one proposed for Louise is; Isolated Perfusion with chemofiltration.

The big question is; which option/facility/doctor provides Lou with a better chance of taking down the tumours? Unfortunately, not ever being able to know the answer to this question makes for a tough decision.

I’m very mindful of changing treatments halfway through, so I want to leave both doors open until a progress scan provides more data on our current position.  We will acquire a liver MRI when her platelets are on their way back up (>100 000), hopefully within a week.

1.) Professor Vogl and Trans-Arte­ri­al Chemo-Embo­li­sa­ti­on(TACE) Of The Liver

Up to 75% of the nor­mal li­ver tis­sue is per­fu­sed by the por­tal venous sys­tem and on­ly 25% is supplied by ar­te­ries. On the con­tra­ry, li­ver tu­mors are supplied up to 95% by ar­te­ries. Hence che­mo­em­bo­lisa­ti­on of li­ver ar­te­ries lead to de­ve­lop­ment of ische­mic ne­cro­sis in the tu­mor re­gi­on whi­le the re­mai­ning nor­mal li­ver tis­sue is spa­red by suf­fi­ci­ent per­fu­si­on th­rough the por­tal venous sys­tem.

The half-life of a che­mo­the­ra­peutic agent is in­crea­sed by hours to weeks through the stop­pa­ge of blood supp­ly.

The procedure as I know it: Af­ter lo­cal anaesthesia, a punc­ture is ma­de in­to the fe­mo­ral ar­te­ry in the in­gui­nal re­gi­on. Doing this, a small fe­mo­ral sheath is usual­ly placed in the ar­te­ry th­rough which dif­fe­rent ca­the­ters or gui­de-wi­res can be in­s­er­ted.  The ab­do­mi­nal aor­ta with its va­rious bran­ches is vi­sua­li­sed. Then a very small ca­the­ter (mi­cro ca­the­ter) is pas­sed th­rough the li­ver ar­te­ry in­to the ar­te­ry supp­ly­ing the tu­mour and the che­mo­em­bo­lisa­ti­on is per­for­med. You’re gi­ven pain me­ds th­rough in­fu­si­on du­ring the pro­ce­du­re.

The cocktail is usually strong chemo agents. For Louise, for both her rounds, she had 9.88mg of Mitomycin C, 101,96mg Irinotecan, 50,12mg Cisplatin. This is combined with Li­pio­dol and Spherex, these two ingredients block the blood ves­sels.

At the end of TACE Louise was placed in ob­ser­va­ti­on for about three hours du­ring which pos­si­ble com­pli­ca­ti­ons can be dia­gno­sed and trea­ted (which she’s never needed). She also had an MRI before the procedure and a CT after to eva­lua­te the suc­cess of the tre­at­ment and to ru­le out a com­pli­ca­ti­on.

This technique allows the toxicity to be >80 times a systemic dose.

Side effects:

Most sources I’ve read say TACE has mi­ni­mal ad­ver­se ef­fects with very litt­le stress for the pa­ti­ent. This, unfortunately, hasn’t been the case with Louise. The side effects for Louise have been severe. They include:

  1. Extreme nausea
  2. Inability to move/comatose sleep, for well over a week
  3. Doesn’t eat and barely drinks = dehydration
  4. Weight loss – up to 5kg’s
  5. Scrambled brain like she’s extremely drunk, these side effects last for two weeks
  6. Key Blood results decrease significantly, apart from the usual side effects and danger this has, it also delays the next treatment significantly
  7. Massive mental hit

The brain issues are likely to get worse with each treatment, based on treatment one and two. Having her mind scrambled for weeks will have a big effect on her motivation and ability to fight.

2.) Professor Aigner and Regional Chemotherapy (RCT) – Isolated Perfusion of The Liver

In the method suggested for Louise, an arterial port catheter is implanted directly into the tumour-supplying vessel during surgery. This enables the tumour to be treated with the chemo agent over three to four days. This is combined with isolated perfusion where the liver is isolated with a catheter system, so the high cytostatic concentration flows through the liver by means of an external pump.

At the same time heat is supplied to the tumour (hyperthermia) and the oxygen content of the blood supplied to the tumour is reduced.

This method is combined with chemofiltration (extracorporeal detoxification which is like dialysis) to remove excessive amounts of chemotherapeutic agents in the systemic circulation. This is done at the completion of the isolated perfusion phase.

This technique also allows the toxicity to be >80 times higher than a systemic dose.

Side Effects:

None of Aigner’s patients experiences the brain issues Lou experienced with TACE and his patients have a much less severe reaction. “95% have few side effects.”

We’re not guaranteed that Lou will have minimal side effects (as his treating team predicts) but I envisage they will be considerably less.

What’s holding us back from making a decision?

  1. We don’t yet know how effective the two TACE sessions have been
    1. An MRI will assist with this
  2. If Lou has had a reduction in tumour size then we should consider continuing the next two rounds with Vogl
  3. The door with Vogl could close if we go with Aigner
    1. I will ask Vogl if this is the case
  4. We would be changing strategies without completing the current prescribed regime
  5. We don’t know if Aigner’s treatments are as effective as Vogl (It’s something we will never know)
    1. I think that they are as effective but maybe I just want to believe this so its apples for apples on the positive treatment output….

Another big ingredient in the decision is our desire to change the chemotherapy agent/s for either treatment choice if the first two rounds of TACE haven’t had a positive enough effect on the tumours in Lou’s liver. This is a whole subject in itself……..one that I will try and explain in my next post….

Click to view in Google Sheets

Current Treatment Regime – Frankfurt

The objective is to achieve four individual regional chemo liver sessions (half the liver per session) with Professor Vogle between November and January.  In between these sessions, receive as much complementary therapy as possible.

Univ. Prof. Dr. med. Thomas J. Vogl

Transarterial chemoembolization/chemoperfusion; Abdomen Rotation Vom. Puncture of the femoral. Introduction of a 5F lock. Careful positioning of a pigtail catheter. Incorporation of a cobra catheter. 9.88mg mitomycin, 101, 18 mg irinotecan, 50, 2mg cisplatin, 5 ml Lipiodol occlusion, 180 mg EmboCept. Other: 3mg Granisetron, 20mg Dexacortin, 100mg Pethidine

Dr. med. Jürgen Arnhold

Curcumin: Is a substance found in the spice turmeric and has long been used in Asian medicine to treat a variety of maladies. It has antioxidant properties, to decrease swelling and inflammation. Inflammation appears to play a role in cancer.

Shogal; Is a biochemical produced during drying and cooking of ginger roots. It is active against tumour stem cells in concentrations which are harmless for healthy cells. The raw ginger extract can inhibit the proliferation of cancer cells

Resveratrol;  A dietary polyphenol derived from grapes, berries, peanuts, and other plant sources. Resveratrol affects all three discrete stages of carcinogenesis (initiation, promotion, and progression) by modulating signal transduction pathways that control cell division and growth, apoptosis, inflammation, angiogenesis, and metastasis.

Photodynamic Therapy: A photosensitizing agent is injected into the bloodstream. The agent is absorbed by cells all over the body but stays in cancer cells longer than it does in normal cells. Approximately 24 to 72 hours after injection. When most of the agent has left normal cells but remains in cancer cells, the tumour is exposed to light. The photosensitizer in the tumour absorbs the light and produces an active form of oxygen that destroys nearby cancer cells.

In addition to directly killing cancer cells, PDT appears to shrink or destroy tumours in two other ways. The photosensitizer can damage blood vessels in the tumour, thereby preventing the cancer from receiving necessary nutrients. PDT also may activate the immune system to attack the tumour cells.

Dr Gerhard Siebenhüner

IPT (Insulin Potentiation Therapy); Normally this therapy is done with a low dose of chemotherapy. However, because Lou still has chemo in her liver from the TACE, this process helps the chemo in her body do its thang.

DCA Infusion: The aim of this drug is to kill off cancer cells, while not harming healthy cells. DCA turns on natural apoptosis (cell death) in the cancerous cells. It also blocks the process by which glucose is used by cancer cells, thus removing their energy source and starving them. Without blocking the glucose of healthy cells.

High Dose C:  Vitamin C breaks down to generate hydrogen peroxide, which can damage tissue and DNA. The new study shows that tumor cells with low levels of catalase enzyme activity are much less capable of removing hydrogen peroxide than normal cells, and are more susceptible to damage and death when they are exposed to high doses of vitamin C.

Artesunat Infusion:  A substance from the annual mugwort, has a destructive effect on rapidly growing cancer cells. Tumour cells have much higher iron concentrations than healthy cells due to their extremely accelerated rate of cell division. Artesunate gets into the heavily iron-loaded cancer cells, spontaneously large amounts of so-called free radicals are released, which damage the cancer cells and finally destroy. Recent studies show that Artesunate interferes with the neovascularization of the tumour. In this way, the tumour cells can be cut off from the blood supply and starved,  this reduces the possibility of metastasis formation.

Extracorporeal Regional Hyperthermia EHY-RG: This involves artificial heating of the affected areas of the body to temperatures above 40.1 degrees Celsius. This is done by irradiation of electromagnetic waves. The body surface is protected by water cooling of the overlying irridation head. Heat can harm or kill cancer cells by damaging proteins and structures within the cells. Heat also damages blood vessels inside of tumours and causes less blood flow to the tumour, which can help slow its growth.

The above list of infusions and hyperthermia is alternatively managed by Arnhold and Siebenhüner and worked around Vogl’s TACE

  • Note added in December: We were not able to continue with all of the above-intended treatments. Lou’s liver is not healthy enough. We have only been doing a reduced amount of infusions to aid recovery. 

RCT (Regional Chemotherapy), The Objective Is To Buy More Time

I’m attempting to talk about RCT, I think you’ll find it hard to comprehend while Evie is busy “on the phone.” 😂 I do pretty well at staying on track. (you’ll see her walking around in the background “talking to her cousin Billy” – classic)

Hey Evie, the phone is upside down!

I think this next video is a great visual of how RCT works, along with some of its applications.

Stories like Nada’s also give you the confidence and motivation to aid a decision. We know that Lou may not respond in any way as Nada did, but we will know if she responds and how, this very month.. ………Gotta be in it to win it…..

The two videos were created by Brian Hunt, Nada’s husband. I’ve been in contact with Brian for some time, to share our stories. Nada was treated at a  Clinic in Burghausen Germany, called Medias.  I had some direct contact with Prof. Dr. med. Karl R. Aigner who is a pioneer in the field of regional chemotherapy and heads up the clinic. We really liked him. We ended up prioritising Profesor Vogl but Aigner is definitely a sound option.

Elysia and I have been talking to patients and doctors all over the world since August this year, a bit like obsessed crazy people. While we’ve been perpetually prioritising; the time, the situation and conversations naturally massage your list of options into order. When it feels right to move, you move.

My Week In Numbers

Louise DeCelis Back in Hospital For Chemo Side Effects

All the preparation in the world cannot beat the demon that is chemo. It might start ok, and you think “hey maybe this time I’m going to get through this relatively unharmed” and then SMACK, SMACK and once you are down SMAAAAACK!!!!! There is no such thing as chemo and unharmed.

And so you suffer greatly and you sob to your husband that you don’t want to do it anymore. And you don’t. NO MORE!!!! You find yourself disoriented in the hospital not knowing what day it is.

Then your bloods start coming back to acceptable levels and your mind feels peaceful. You finally turn the corner. You wake up fully and you can move your body, walking, stretching. Literally coming back to life. That’s my week. I’ve climbed out of the hole and I’m feeling alive again. Crawling til I’m walking, walking til I’m dancing.

My week in numbers…

Days since the last Chemo: 8
Days it took for the demon to get hold of me: 4
Days spent sleeping 20 hrs: 2
Hospital days done: 4
Hospital days to go: At least 3
Net round of chemo due: Yesterday. Will have it as soon as blood levels are back up. Ouch!
Side effects of chemo: 7 (at least) unbearable, unspeakable side effects that hit you all at one time
Medicines taken: Too many to count 🙁
Hair falling out: ZERO!!!! Yessssss
Hours slept: Over 110
Hours spent crying: More than usual
Needles: Only 1 straight into my new port. Woooo hoooo!! Saving me 20 needles this visit alone.
Nurses looking after me: Mix of 10 beautiful people. I heart nurses
Litres of IV saline: 4
Platelet count: 34 (Normal 150-450. Below 20 platelet transfer)
Other blood counts: All in the danger zones but improving each day
Visits from my kids: Zero. Hard for me but easier for them. Dom brings them in when they ask to come
Laps of ward: 7 and rising
Messages of support: Over 100. THANK YOU SO SO MUCH!!!!!!
Bravery: Utterly diminished the day I was admitted but its come back in force
Strength Body: Wasting dammit. Back to baby steps and my home yoga gym space. Cannot wait!
Strength Mind: Rock solid! I’m back in the ring. I’ve got this!!!

And that’s what a week in my world looks like! Let me know what you have all been up to XoX

Evie and Noah Byrne with their mumma - Louise DeCelis.