The start of Avastin!

Avastin has been a drug that seems to have been rolling around and around in my head for a considerable period of time, ever since Jamie Murphy mentioned it at my appointment at Imperial which opened my eyes and gave me some sort of hope that when options get limited, got to keep on searching. This searching i will continue to do as like he said then my other choice is get off the train and he didnt think i was ready for that and i still dont think im ready for that.

Dr Awesome and Addenbrookes weren’t convinced it was right a while ago as they had not seen much benefit from it, however from speaking to a few people online some had some outstanding results from it and it seemed relatively tolerable. Sian and Sarah Cannon had given me hope to try some of the older, repurposed drugs, however at the time avastin wasn’t necessary because cetuximab rechallenge was doing well, then next bump in the road KRAS mutation meaning need to switch to EFGR inhibitor and try and shut that avenue down, so we are left with giving Avastin (Bevacizumab) a shot.

“Avastin/Bevacizumab targets a cancer cell protein called vascular endothelial growth factor (VEGF). This protein helps cancers to grow blood vessels, so they can get food and oxygen from the blood. All cancers need a blood supply to be able to survive and grow. Avastin/Bevacizumab blocks this protein and stops the cancer from growing blood vessels, so it is starved and can’t grow. Treatments that interfere with the development of a blood supply are called anti angiogenesis treatments.”

With Avastin we need to keep an eye on bloods as normal but also need to keep an extra eye on kidneys and heart alongside usual liver, so alongside blood tests need to have regular urine tests to check for a protein rise which could be linked to proteinuria, which is a side effect and more regular blood pressure takings (I hate them too) to keep an eye on any damage to heart.

Side effects, let see what happens with this drug: GI perforation (rare but serious), wounds not healing (not great i love a war wound), bleeding, severe high blood pressure ( more monitoring, not ideal), stroke or heart problems (scary shit), kidney issues (pretty scary).

Then the more regular common side effects: nose bleeds, rectal bleeding, back pain (great bit more), headaches (jump on board), taste change (like that didn’t already change weekly).

When you break it down into that though, its worth a chance and i’m going to be monitored pretty efficiently and regularly to try and prevent these things, guess i best get used to my Blood Pressure (BP) getting checked, maybe even purchase one for home (sounds fun) i’ll hide that with all the other medical stuff, need some days out of sight out of mind.

Well avastin started on 13th May 2020, 10 weeks into lock down and shielding and my 102nd round of some sort of chemotherapy. My treatment is still at the Nuffield at this point so in i pop the week before for bloods, BP and urine test all come back fine well fine for someone with a tumour riddled liver and a few dodgy areas in my lungs. Treatment starts at Nuffield a 1.5 hour infusion, hopefully decrease by 30mins over next round. So 1.5 hour infusion alongside the Irinotecan, Calcium Folinate, Saline and 5 FU, another 9-4 if its a lucky day it is. Runs through pretty smooth no reactions and seems to go unnoticed except unusual tiredness but often comes with switch of treatment, good start. Off home i go and round 102 goes smoothly.

Well talk about lull me into a false sense of security and a doable 2 weekly pattern to follow, well think again. Cycle 2 or 103 comes along and I am pretty sure i ticked everyone of those side effects above except 1 or 2. Throw in the severe itchiness, irun bru coloured pee and stool like snow, yeah something is not right and this is all a sign of increased bilirubin levels. Safe to say this isn’t normal and a significant worry in what is happening and what that means for any treatment. Thankfully no jaundice to be seen but we are in very rocky waters and ones we don’t know away out of other than pretty much scream, panic and book an emergency scan, praying not huge sign of disease progression or the start of liver failure. It is safe to say that this chemo round has hit me like a ton of bricks not really leaving my bed for the entire 3 weeks, feeling sick at every moment, itching my entire skin off and screaming with panic. Fun did not even feature in life or my head.

Scan booked and results arrived on Monday 15th June, 14 weeks into shielding. Few saving graces, very quick scan and result turn around, knowing i had Dr Awesome and team support and the imminent arrival of Vix (my bottle moment thanks @bottlemoments and Rob Durrant) to be an ear for whatever the results may say, but also provide some support through what has been a tough few weeks for us both all our coping strategies stripped away. So with Vix and family sat waiting anxiously off i go to hear the results and find out what the hell is going on. I walk into a way less anxious room than i was expecting and a smile, well thankfully what i know is a slight smile from behind that mask and definitely not a sad Dr Awesome face. No liver failure and she stares with a general check of jaundice and me turning yellow, no sign of that thankfully. If its not liver failure then what is it.

Well it also was not a sign of dramatic disease progression, slight growth in my lungs and liver, yes not great and not ideal but definitely not what the worst and most likely result was. The most damning and sad bottom line of a letter, for those of you that don’t know my letters are very rarely serious and mainly confusing for anyone else who reads it definitely not my GP as i don’t have one. A while back i encouraged Dr Awesome to get something funny from my appointment in each one, I tend to receive it just as i’m hoping to start to begin to feel a bit more myself and regain a personality, less doom and gloom and scientific jargon the better.

This scan will now be used as a baseline scan and we will start the count of 6 rounds of avastin once again and review in 6 rounds (approx 3 months) if i can get my liver back under control and the bilirubin to settle otherwise i’m constantly being deferred and they are turning into 3 weekly cycles sometimes that being a push. So round 1 of this set is scheduled for Wednesday (17th June) and again this continues to absolutely kick my ass and light at the end of the tunnel begins to look further and further away, anything feels an absolute chore and huge effort but i and the people around me know that getting some of this going is potentially the shift that may be needed to push through this. Thankfully this has combined with my best support network around me and ease on some of the shielding regulations enabling me to branch out a bit and have/organised some face to face contact with hugely important people in my life, video calls have been a saviour but nothing will beat, that hug when you can have it, the face to face contact and a change in scenery (although the garden looks top notch #wembleyturf).

Bilirubin, well what is this rogue blood level/ enzyme change that is appearing to cause all this bother? Its an orange/yellowy substance created by the break down in red blood cells ( hence the Irun Bru looking pee) this is normally passed through the liver and excreted through urine (wow our bodies are clever). Increase in Bilirubin is signified by a higher than 1.2mg reading, well with all the liver stuff mine is normally higher than that and tended to sit late teens and early 20’s but no higher and no visible symptoms. Safe to say it was out of control i was coming in with readings of 40+ , 40 is the medically allowed limit of delivering full dose chemotherapy so i was in very rocky waters.

Condition of having high bilirubin is known as hyperbilirubinemia, normally caused by gallstones, Gilbert’s syndrome, liver dysfunction (that’ll be the ticket), hepatitis, bile duct inflamation and anaemia. Several things can affect the function of your liver, including: cirrhosis, liver cancer, autoimmune disorders involving the liver. Common symptoms of liver dysfunction include: jaundice, pain or swelling of your abdomen, swelling of your legs or ankles (edema), exhaustion, nausea, vomiting, easy bruising, dark urine, pale, bloody, or black stools, itchy skin.

Apparently the itchiness comes from some effect on the bile duct which connects your liver to your gallbladder the opening of your small intestine, called the duodenum. They help to move bile, which contains bilirubin, from your liver and gallbladder into your intestines. If these ducts become inflamed or blocked, bile can’t be properly drained. This can lead to an increased level of bilirubin and for these bile salts to sit under pockets of skin causing you to itch extremely.

Three rounds later this is still kicking my ass and like walking a tight rope every week waiting for the results and side effects, but for now the last round showed some physical improvement and back to bi weekly, although seemed to take its toll mentally and emotionally. Onwards and hopefully upward lets get to that magic round 6 due sometime around the 9th September, all permitting, and then the scan results to find what this has been achieving and how the world that had become a tiny bubble may have changed.

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