Rick's b.log - entry 2019/09/29

Erivedge (Vismodegib) killed my mother

At the beginning of November, there was what appeared to be a new nail. Bigger and thicker. Seeing an intern on the 5th of January 2018, he said that it looked like a benign tumour underneath the nail. He sent her to a local hospital, where a doctor with a Spanish name said it was a "subluxation", so wasn't his medical speciality.

Back a little later to see another intern, this time a man with a posh name. He referred her to the dermatology unit at the main teaching hospital in Rennes. He must have pulled some strings, as she was called to come in the next day. The confirmation - that it was 95% a tumour (the other 5% left open because the development was bizarre and unusual). It was a type of melanoma rarely encountered in white people. Unfortunately the toe will need to be amputated.

Which it was, in the Spring of 2018. Mom stayed in hospital a short while, then returned home. We stayed together, as that was the time that stupid here fell off his bike and was off work for three weeks while my wrist healed. We sat outside together and... it was peaceful. Mom had a lot of pain from the ball of her foot. Unlike toe amputations for diabetics (no idea why, it just apparently happens), they had to go deep into the foot to remove all of the toe.
Mom surprised me towards the end by coming around with the car. She fought through the pain and found a way to be able to press the clutch pedal without too much problem. She wasn't going to let this adversely affect her quality of life.

17th August 2018, mom loved the area of the Vignoble.
And after years of driving by, on her first long journey
out after her operation, we stopped to take a photo by this sign.

So, that was a done deal. Toe amputated, let's do a PET scan in six months.

Only... it wasn't.

Her toe was sent to America for genetic analysis. Cancer was detected in the bone, and the genetics were unpicked to recommend types of immunotherapy that might work. Her scan was advanced, and when it was concluded, there were anomalies in the lymph glands.

Another operation in 2018, this time to remove the upper lymph glands in her left leg. This was a more drastic operation, as the leg would no longer be able to drain its impurities, but, again, mom was back up and going in record time. She wasn't going to let it get her down.

Mom on the 13th of January, on her daily walk up the lane with Wawa.

The next scan started to show anomalies in a lung (one of the usual places a melanoma spreads to). So mom began a course of Nivolumab (immunotherapy). This is a rather ingenious idea that works by removing the cancer's ability to hide from the host body, so that the immune system can see it and attack it just as if it was the flu. It's called immunotherapy because it helps the immune system learn how to deal with the cancer itself. It is, as close as exists these days, a "cure" for cancer.

The problem is, like the flu has many different strains (like the H1N1 you may hear about), cancer is a generic term for a multitude of different types of illness. There is no such thing as "cancer", there are many many things that together are called cancer. So the medication needs to target a specific type of cancer in order to be effective.

In Spring 2019, a scan showed that Nivolumab wasn't working. So mom was switched to a similar treatment called Keytruda. And around Easter, had a treatment on a radiography machine called a Cyberknife.

Mom with bunny ears for her CyberKnife appointment on the 8th of April.
She also wore these for her Easter time immunotherapy, because, f**k cancer.
Also, mom was like that. If she could make people smile, then that's a good thing.

Another scan was performed, and after only two treatments with Keytruda (she had three in total, but one after the scan), her oncologist determined that that wasn't working either because the cancerous areas were increasing in size. This sounded a little suspect to us, given that one of the clear notes for Keytruda is that the tumours will likely increase in the short term as the medicine takes effect. Don't take my word for it, go Google.

Mom enjoying the Parc Radenwormvald in Chateaubriant.
This was one of her last outings, on the 23rd of June.

So then we come to early summer. When the Next Best Thing, a chemo-in-a-pill option was proposed. A pill called "Erivedge" (trade name) or "Vismodegib" (molecule name).
Mom didn't like the idea. The pill had some nasty side effects and not a terribly good track record in working. It also had a spectacularly high rate of people taking themselves off of the pill. The oncologist mentioned that when this is shown to work, she can write a paper about it. She seemed quite enthusiastic.
So mom began her daily course of medication, a medication where each individual pill cost a staggering €130. The results were swift and immediate. Her body wanted it out.

So she went to see a doctor after three days, who told her to give it a rest over the weekend, and her oncologist suggested to take the medication every other day instead. Mom did not want to continue with the medication at all, but followed her oncologist's orders.

She only took maybe three or four more of those pills. I don't know exactly, and if the pill jar is here I'm not going near it. It's a biohazard.
The results were, as before, swift and immediate and this time worse. By this point she was basically vomiting everything she tried to eat.

Mom kept a daily diary, she would write a page every single day. The final entry is Wednesday 24th July. It ends:

I STILL FEEL POORLY. Still nauseous, still very tired, lacking energy to do ANYTHING - and my back hurts.
How long will this awful stuff remain in me? Today is day 12 - it's supposed to be gone by now??!!

At her next visit with the oncologist (July 31st), she was immediately admitted to the dermatology unit (as the oncologist was attached to dermo).
This was a miserable experience. She was put on IV medication that made her throw up more, with a nurse in charge that was quite unfriendly and staff that were often uninterested. She never had a phone set up, because all too often when she asked for something, the attending person would say "yes yes" and nothing would ever happen.
One of the days, mom didn't take her medication. Not because she didn't want to but because she asked for a glass of water that was never brought. Nurse-in-charge went ballistic, called my mother anorexic and said she had psychological issues.
She had short physio sessions. Nobody ever sorted out a walking frame for her, she was expected to push a heavy wheeled chair around. She was also sat in a chair which caused her leg to swell (because she wasn't able to wear her constriction tights). Nobody seemed even remotely interested.
They determined that the main problem was a severely aggravated stomach ulcer. They gave her a treatment for that by IV along with a blood thinner because of her frequent lying down position. She kept throwing up, and we both suspected that half of the cause was the medications.

Mom left there and returned home after three weeks in more or less the same state she was when she entered, only this time with a bedsore because of the general lack of care. Mom said that one of the doctors admitted to her that there was a problem with the dermatology unit, but there's a big difference between spotting a problem and dealing with the problem. As long as everybody thinks that dealing with the problem is somebody else's job, patients will continue being treated badly.

Mom returned home. And kept throwing up. I'd feed her small amounts of baby food, but it was clear that her taste reception had been badly messed up - she found everything disgusting. I mean like eating washing up liquid (Bitrex) style disgusting.

On the 23rd of August, mom went outside and enjoyed looking at the plants, the flowers, and talking to our English friends who turned up in the afternoon. She called the doctor and had her stop the Lovenox. Mom felt that she'd be a lot better if she got all that crap out of her body. I do not disagree.
That was her last good day.

23rd August, mom's last good day.
We originally took this photo to make a copy for my boss
to say thank you for allowing so many days off with short notice.

On 24th of August, she managed to make it out of her room to collapse onto a sleeping bag outside. I stayed out with her all day to move her around to be out of the direct sun.
That was the last time she made it outside by herself.

I called a doctor on 26th of August. He came out and give mom a quick check over. Mom had already voluntarily stopped taking the anti-vomiting medicine as one of it's common side effects was... vomiting. The doctor changed the medication for the stomach ulcer, and put her back on the Lovenox blood thinner, a medication that isn't supposed to be given to people with a history of stomach ulcers. It says so on the leaflet in the box...
He put her on a glucose drip and had the nurses visit twice a day. In the evening to give the Lovenox and set up the drip, and in the early morning to remove the drip. She needed to be hydrated, certainly.
Weekly blood tests were taken, and it was improving from the bad state it was post-hospitalisation.

After a week the drip was removed. The nurses still came every evening to give the Lovenox injections. They would comment on how tired mom looked.
No, not tired. She was literally wasting away. While the doctor said the body needs water and can handle not eating, though he didn't have a reply for "not eating for nearly two months?". He also did not want to admit her to a hospital, preferring instead to provide her with little high-protein meals.
That she couldn't eat.

She looked increasingly bad. I fed her little amounts of food - apple and peach baby food, she quite liked that. It is worth noting at this point that it took until around now (8-9 weeks) for the taste effects of the few Erivedge pills to wear off. Food started to taste more like food, but her body was rejecting most things. I got her some protein drinks (via prescription), but like with the baby food, she could only manage very small doses.

I contacted the oncologist on the 13th of September (Friday 13th!) to say that mom was in too poor a state to make her rendezvous. She could, by this point, no longer manage to get up even with help. He body needed energy and raided it from wherever it could.
In return cancerdoc got back in touch to say she can set up a stay in a palliative care unit to build her back up. Mom was breathing very strangely on the night of 12th September, I was worried that she'd die in her sleep.
Cancerdoc found her a place on Wednesday, and after I said what was going on, she managed to get that advanced to Monday. At about half three in the afternoon on Monday 16th September, mom left in an ambulance.

She never came back home.
And she never will.

She was taken to a place called Le Tauvrais in Rennes, which seemed nice, except for one person who "speaks English" that told mom that she was there to die. When mom said she was there to build herself back up, she was told that she was in denial. As you can imagine, that upset her quite a bit.
The following day a doctor (somebody with a real qualification) told mom that she was not there to die. Little Miss Death Fettish wasn't going to give up that easily, asking mom instead "if you aren't here to die, why are you here?". Mom did not report any more about this horrible person, I don't know if she found a different victim or if mom just tuned her out.

By the 20th of September, mom had a phone set up in her room. We talked in Friday, she complained that it was too loud, so I looked it up on the internet and found the volume switch. But it didn't seem to make much difference. She said I'd have to do something about it when I come and see her on Wednesday.

Over the weekend I was supposed to go and put together a bag with clothes and stuff. But, perhaps due to morphine, she was quite out of it on Saturday. And worse on Sunday. I recorded her last phone call, it was simple phrases after very long pauses, sometimes repeating a past phrase that didn't really apply much to what I said.

On Monday, the nurse answered the phone both times I called. She didn't wake up. After having complained that the phone was loud enough to wake the dead.

I was taken to see her Wednesday evening. She never woke up. She never knew I was there. And, to be honest, I was not sure that "she" was there. Her body, yes, but not the part of her that is who she is. I knew the state when I saw mouth swabs.

She began Cheyne-Stokes respiration on Thursday. Sometimes it sucks to have been a Care Assistant. I could see all of these things and knew what it was leading to.

At about half seven Friday evening, mom died.

Maybe I am just angry, lost, lonely, and discombobulated - but I see here so many failings of an event that didn't have to happen.

So let me dispense some Rick Wisdom.

• First up, for utter shame that a person dies of what is essentially serious malnutrition in a modern developed country in 2019. The problem wasn't just her stomach ulcer, the problem was that she wasn't able to keep food inside. I believe that she should have been admitted to a hospital that may have tried a feeding tube or something. Just shoving protein drinks in front of a person who can't keep it down is... frankly... negligent.
  Did you consider that she was 71 and dying of cancer anyway, so you'd only do the minimum? How dare you make such a choice. Every patient is important. The babies, the grannies, and the many in between. Are you not obliged to sign an Oath that derived from the Hippocratic Oath?
• Secondly, the staff of Dermatology CHU Pontchaillou Rennes really need to go on a course to remind them of how to treat patients. If they ask for things, it may be because they can't do it themselves. And yes, it is unpleasant to deal with bedpans, but it's your goddamn job. I did it as a Care Assistant, and I did it with Care (clue in the job title), I didn't just shove it under in a painful way.
• Thirdly, this one aimed again at the Dermo unit staff - if you have an immobile patient, have you never considered the concept of a bed bath? Were you even trained in how to give one? The state she returned home in... you should all be ashamed, but I don't believe that you even know what shame is.
• Fourthly, to cancerdoc. Thank you for all of your help, but please recognise that if a patient who was a nurse tells you she doesn't want to take a medication, she doesn't want to take it. I hope you do write your paper, and I hope you document the ways that Vismodegib directly and indirectly contributed to her death. Should it not be given to people with a history of stomach ulcers? I would imagine that Vismodegib will kill more people, so please keep an eye on all that genetic stuff to see if a pattern emerges. In new and experimental medicines, the failures are perhaps more important than the successes. Please don't pretend there is no correlation, there obviously is. Keep at the research, and one day maybe it may lead to the breakthrough that we all hope for.
• However, we both disagree with your assessment that Keytruda wasn't working following a PET scan after only two doses. Surely it would have been more logical to wait a little longer? Everybody said that the cancer was slow progressing, so more time to assess Keytruda might have been better than a rapid switch to Erivedge?
• Never ever tell a person "you're here to die". Even if blood is gushing out like in a Tarantino movie, you do not say that. Ever. It's not a question of denial, it is basic bloody dignity. Few people want to die, and of those many that are in the process every day, I would reckon exactly none of them want to be told that. Yes, affairs need to be put in order, and yes, people probably are there to die. But as long as the human spirit persists, there is hope. A belief in better. Whoever you are, fuck you.
• And finally, I believe that not only did Erivedge cause complications that directly lead to her rapid demise, but that she would still be here if she hadn't taken it.
  Yes, she would still have cancer, and yes, she would ultimately die of it. But she would still be here. We would have had a nice summer, and maybe one next year too. That was all we hoped for. Mom said she'd consider herself lucky if she got five years.
  Erivedge didn't even give her five months. And the final few were nothing much to talk about.

This didn't have to happen. So many things could have happened just a little differently that might have led to an entirely different outcome.

Please remember, and never forget, that my mother was not one for visiting the doctor. She took Gaviscon for heartburn, and a half paracetamol if she had a bad headache, but those times could be counted on one hand yearly. She trained as a nurse, she knew doctors, hospitals, and medicines. And, quite frankly, she didn't trust any of it. It's hard to argue with this having read the above. I'm certainly going to think twice before going to the doctor (not that I do unless absolutely necessary). You aren't God. You don't know everything. And every single one of your patients is a person with hopes and dreams. If you're the sort of medical professional who sees people as data on a spreadsheet, please do everybody a favour and quit.

Finally, to sum up this long and difficult blog post, if you happen to land here because you Googled for "Erivedge" or "Vismodegib", and somebody has prescribed it for you or a loved one...

...please begin the course. You may be one of the few that it actually works for.

However, if your body reacts badly, then stop. Stop immediately and do not look back. Your body is trying to tell you something. Listen to that, not your oncologist. My mother only took about a week's worth of pills, and the demise was swift and unpleasant. Listen to your body, and please don't let yourself end up the same way.

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Zerosquare, 28th September 2019, 16:35

This is so sad.    Heartfelt condolences.

Mick, 29th September 2019, 03:54

I was so saddened to hear that Jane (Rick's Mom) has passed away. 71 is no age especially for someone that was (until recently) as fit as she was. Full of energy, enthusiasm and so positive. While I already knew how badly she was treated plus how she was was suffering and the reason for it, I so hoped she'd pull through. I've met up with Jane and Rick a few times, but it must be 3 or 4 years since my last visit though? They have put me up on all but my first visit! I feel honoured to have known Jane. She was a shining star and I will miss her. I'm truly gutted.

David Pilling, 29th September 2019, 17:08

So sad to read this - Mom always came over as a voice of good sense in your blogs.

Beth DeFrancesco, 29th September 2019, 18:18

I didn’t know Jane personally - I was a pen pal from USA and she and I corresponded only about 18 months, but we connected immediately. I am so saddened at her passing and the horrible, uncaring, undignified way she AND RICK were treated. There are no words. . .

Rob, 29th September 2019, 20:16

I really don't know how to respond. I am so upset reading this. And angry. My heart goes out to you.

Steve Drain, 5th October 2019, 20:32

Thinking of you.

Doug, 6th October 2019, 00:41

Rick   So sorry to hear about your Mom.

Daniel, 7th October 2019, 10:51

Rick,  Deepest sympathy.  I know how you feel as I have been hear recently. Please remember to look after yourself.

David Boddie, 12th October 2019, 22:39

Sorry for your loss, Rick. Just know that you have friends to lean on if you need to talk to anyone.

John McCartney, 12th October 2019, 23:07

I've just found this page from your comments tonight on the ROOL forum. It's difficult to understand what you've gone through and, indeed, must still be going through. Please accept my heartfelt condolences.

Frank de Bruijn, 13th October 2019, 07:11

Lost for words. My condolences. Look after yourself.

Paul Sprangers, 13th October 2019, 12:09

Very sad indeed, Rick. Because of your blogs it was like I knew your Mom. My condolences.

Alan Williams, 12th December 2019, 08:26

Rick,  that's a truly dreadful deal. I fully sympathize I know that place. I could write something similar, though its six years ago for me. I deleted photos. I too don't want to remember the last days but its so bloody hard not to. Sob. Writing has brought tears to my eyes. Keep calm and carry on.  Best wishes  Alan    PS you know me for !awServer.

John Nelson, 7th September 2020, 10:47

Hi Rick,    I'm the chap in Essonne that you've spoken to on Youtube.    Really sincerely sorry for your Mum and what you've both been through, before she sadly passed away.    Hope things are a bit better for you a year or so on. If you ever want to chat with a fellow Brit, you now have my email.    The big "C" has been in my life so much. I lost my Dad to it long ago, my Grandma 10 years ago and now latterly in 2018, my French MIL. It is so hard, but it is important to carry on and lean on those you can trust.    That's about it for now. Bon semaine et bonne rentrée... A plus...    John.

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