A break from blogging, a break from work, a break from treatment and some airbnbs at my favourite places, Dartmouth and Lulworth Cove.
Iām still here and trying not to get so down about everything. Weāre planning for the future, and have ordered a second new electric vehicle. Weāre planning on getting a new sofa and a new bed.
My biking friends are asking where weāre going on our trip next year and Iām planning on going.
Treatment again this month and Iām still only managing half days at work but Iāll try and keep the activity up. Iāve also realised my lack of movement has had a significant impact on my weight and waistline so I need to watch what Iām eating if Iām going to be around for a while.
The last few posts on this blog donāt make for pretty reading and a few times Iāve been tempted to take some down. But living with cancer isnāt pretty or easy and there are downs as well as ups. I think itās important to show everything.
The good news is that I feel a bit better. Iāve got some additional anti depressants that seem to be helping, they also help with sleep but make me really tired. My Dr says my body should get used to them within a few weeks.
Iāve also arranged to start some counselling at the Phyllis Tuckwell Hospice and start later this week.
Iām still struggling a bit with life in general and without any warning something will trigger a full meltdown where I just want to feel normal again without any of the tiredness, or aches or breathlessness or upset stomach or any number of minor ailments bought about by treatment.
Probably the biggest decision Iāve made is to take a treatment break at the end of the month. Today, September 6th is one year since I was first diagnosed. And in that year Iāve had 13 treatments and God knows how many blood tests, pills, phone calls, injections, cannulas, scans.
Exhausting is an understatement and Iāve been told itās ok to take a break from treatment for a maximum of a couple months.
Takes some time, recover and recharge and start again.
Next week I start a two week holiday from work. Sounds a bit odd after all the time Iāve been off work sick but during all of that time I never had a break or went away.
Weāre going to Dartmouth in Devon for a few days for some RnR and then will have a staycation for the second week. Try as much as possible to enjoy ourselves and forget about cancer.
I finally admitted to myself after days of procrastination that I cannot ride my motorbike any more. I just donāt have the energy.
I passed my bike test in 2005 and never looked back. I loved riding it and every year until 2019 I had at least one bike trip away with amazing friends.
My current and last bike is only 2 years old and has done less than 3000 miles. I rode it last weekend, loved it but it wiped me out completely. Riding is a physical effort and one I cannot do safely any more.
Iāve had a total of 6 motorbikes in that time and have some great memories and my bike was my drug, my release, my medication.
But itās just going to sit in the garage and continue to depreciate so I need to sell it and put the money to one side for when itās needed. And it breaks my heart but I have to admit when Iām beat.
When someone says āhow are you?ā, and gives you āthat lookā, I wonder what they want to hear.
Do they actually want to hearā¦
āI have cancer and the treatment is causing horrific fatigue where I can barely make it up the stairs without stopping to take a breath..
Also when I am awake (which is rarely) I struggle to concentrate on anything at all. There is not a moment where Iām not thinking how long have I got left and how long have I got to put up with this. ..
I struggle to do things I like and am depressed most of the time now. ..
My treatment is allowing me to stay alive longer but Iām not actually living, Iām merely existingā¦
I more often wonder if I should just stop all treatment and just get it over withā¦
All this week Iāve had no energy, felt aches and pains all over again and just been feeling low. A struggle to get up in the morning and start work and all I want to do is sleep.
Sounds like normal depression. Iāve never understood why it comes and hits me out of nowhere. But depression doesnāt explain the aches and pains and is more a result than a cause.
Sometimes I feel lucky my treatment is working but others I just wonder why I bother. Iām just existing at the moment and really canāt see anything positive.
Wake up, work, lunch, sleep, dinner, tv then sleep and repeat every day of the week. Weekends we walk the dogs instead of work. I still spend most of it sleeping.
I donāt have energy for anything else and some things in life right now are just draining. Is it too much to ask for a quiet life with no drama. I canāt get away from it sometimes.
People think they have helpful and positive stories about friends or relatives with cancer that lasted beyond expectations. It might be 1, 3, 5 or 10 years but that doesnāt help. It just tells me at best I might see 60. If Iām very lucky.
This gets me down too. Why not just stop fighting and actually get some life back and enjoy whatever time is left. That seems selfish though.
Another 4 weeks has passed and Iāve got another round of treatment to look forwards to next week. I know thatās going to make me feel rough for a few days.
I wonder why Iām still taking treatment that takes away all the energy I have. It may give me more time but at what cost? Itās never going to stop unless it stops working. Then what?!
Iām not brave. Iām a coward. I donāt like feeling pain and I donāt like the energy sapping, empty battery feeling that engulfs me either. Other people have much worse symptoms and side effects and just get in with it. I have it easy comparatively but Iām not sure how much longer I can keep doing it.
A strange thing happened this week. Not only have I slept almost continually since my treatment on Thursday, my worst response to the treatment since the start but I have had a dog worming treatment recommended to me as a cancer treatment. From three different, well respected sources.
Of course I immediately dismissed it as rubbish after the first one but after the second third came in a couple of days apart, from completely difference and unrelated sources, I decided to do some reading. These are not stupid people. I owe it to myself to do some research.
The treatment in question is Fenbendazole. Also known as Panacur, Panacur C and SafeGuard and is a well known and established worming treatment for all animals from cats to horses.
The key bit of information here is that it is a long out of patent drug. Meaning anyone can make it.
I tried to find out if it was really successful why aren’t drug companies falling over themselves to re-purpose it and run trials and tests. The answer is simple.
Money!
Money makes the world go round and it seems that big pharmaceutical companies won’t invest time and money in research into a drug that anyone can then make.
Ok so why won’t the big charities take up the research. Well thats harder to say but whats clear is that they will not touch this with a barge pole. I can make assumptions but I have no facts or evidence. My conclusions are that a lot of their financing comes from big pharma companies and again focusing on cheap drugs with no clear profit is not in their interest. This cannot be the case, surely?!
There is enough anecdotal evidence that some people have had some success taking FenBen (fenbendazole) daily and often they get results very quickly.
But I’m not interested in anecdotal evidence, I want facts, research and studies before I put something, not designed for humans, into my body. This is harder to come by. I ended up at a couple of studies.
I’ve read all three articles thoroughly and the conclusion of the last one, from Stanford University was positive
Conclusion:Ā FBZ appears to be a potentially safe and effective antineoplastic agent that can be repurposed for human use in treating genitourinary malignancies. Further research is necessary to define the role of FBZ as a chemotherapeutic option.
“Further research is necessary” though.
By this time my cynicism has turned to genuine interest but those who know me know I’m not a risk taker.
During my many hours of research I came across a blog from one person, who clearly just wanted to share his experience and is not trying to make any money (unlike other links and blogs with their clickbait links to FebBen sources).
It’s an unconventional blog with all posts appearing on one page, I guess this makes it easier to just scroll through endlessly on a mobile device, which I did.
The more I read the more I became interested. His blog is full of his story as well as stories from others just following the treatment he outlined. Known as the Joe Tippens Protocal (JTP).
The daily protocol:
25mg broad spectrum CBD oil (little to no THC, so legal, and no highs)
222mg fenbendazole
600mg curcumin
From here I joined a private facebook group with dozens of posts a day of people enquiring, desperate for a cure, help and others with good news as well as others saying its had no effect at all.
The next big questions were “what’s the risk?” and “what about my immunotherapy?”
“Whats the risk?” – Apparently none, it is well tolerated in human consumption with only those with pre-existing liver conditions showing any issues. The sceptic in me again comes to the fore and asks “so why isn’t everyone taking this?”. I can’t answer that but its a glaring question. Why is this information not more widely known ?
“What about my immunotherapy?” – carry on. It doesn’t impact any pre-existing treatments. Again I find it staggering that something so low risk is not more widely used.
So I have nothing to lose right? Just do it, right?
Wrong.
I’m still on the fence. Joe is very honest that he did not tell his oncologist he was taking the FenBen as he was on a trial and didn’t want to be kicked off. Lots of people don’t tell their medical professionals. This makes me uncomfortable. I like to believe my team have had my best interests at heart and I don’t want to deceive them. Also if I go to them I with this, I’m pretty certain they’ll laught me out of the room and wash their hands of me.
I haven’t got a clue about where to obtain FenBen or “good” broad spectrum CBD Oil. I know nothing about curcumin or why it’s included. So I have more research to do.
I will say that I’ve been shown not to dismiss anything not recommended to me by a medical professional though. I naively thought if something was available then I’d get it from them but I’ve learnt how big pharma are only interested in money so therefore you only get recommended the current best, and usually most expensive drugs. This isn’t always bad but you need to do your own research.
I’ll say again, I’m not and have never been a risk taker. But this is the first time taking a risk could save my life.
It’s treatment week.. again. Number 12 this time. 12 in total and 8 on just Nivolumab. As always the anxiety is rising despite the fact that the last treatment gave me virtually no problems at all. Which was a first.
It’s also been time for another CT scan, last one was in April and I have them every 3 months now. Last week I had the latest one.
I got my usual, pre-treatment telephone consult yesterday afternoon and they had the results already.
“It’s good news!” I was told.
Fluid on lungs virtually disappeared Nodes in lungs stable – no growth (still almost disappeared) Tumour in Kidney – stable – no growth. Still at 4.3cm
“How do you feel?”
“Disappointed” I said.
Photo courtesy of Matthew Henry
I knew this was likely to happen. The first two CT scans showed good reduction in tumour size from its original 12cm but thats when immunotherapy is most effective, at the start. After that its job is to stop the cancer getting worse. So in that respect it’s working.
But I wanted more. I want the damn tumour gone. Knowing it’s there means a constant axe hanging over me. The fact it’s made no difference is really disappointing. I’ve always been told my cancer is incurable so I shouldn’t really be surprised but it’s still hard to accept.
Well as long as I’m still here and able to type this then I should be happy right?
In other news I’m in my 4th week back at work after a very long break in April. The fatigue still makes a full day impossible at the moment but I’ve getting a lot done in the time I am working so I’m pleased I’m able to still contribute to the workload.
If you’ve come here on some search for as much information on your Cancer as possible following a new diagnosis then I fully understand the need to know as much as possible about what’s happening and what is going to happen.
But if I can offer just ONE piece of advice it’s this. Ignore Google. Do not search for you cancer, or prognosis or symptoms, or any other information on Google. Most of it is terrifying, a LOT of is is outdated. Even data and information from as recent as 2017 is massively out of date due to the rate to research and development into Cancer.
My first few weeks following diagnosis were horrifying and I was convinced at my diagnosis in Sept 2020 that I would not see that Christmas based purely on old and dated info on Google.
What you must do instead is reach out to medical professionals, charities (in the UK Cancer Research UK and MacMillan are fantastic, there are loads of others) also look out for support groups, there are lots on Facebook including ones for specific Cancer, eg for me there’s the Kidney Cancer UK Support Group but there are hundreds of others.
The support groups are great as they are full of people right now going through or have gone through what you are now facing and they will help you put your mind at ease with realistic information, support and help.
Surround yourself with a support network because it is scary when you’re first diagnosed but take it one day at a time and deal with the here and now.
For about 2 months now I have been slowly reducing my Oxycodone dosage. I was on 30mg slow release twice a day for pain relief but with my ongoing fatigue I wanted to do anything I could to try and reduce this.
I’ve been increasing general activity with walking, cycling and just keeping myself busy rather than allowing myself to constantly sleep. If I’m physically active I seem to be able to keep going a little longer but as soon as I stop and sit down then its like my body takes it as a sign to rest and wants to shutdown.
The main cause of fatigue is my Nivolumab monthly immunotherapy treatment but a lot is also coming from the opiates. I’ve not had any pain that I believe is associated to my Kidney cancer for a while now so it seemed logical to reduce the Oxycodone dosage and find out if I still needed it.
I hadn’t realised quite how dependent on it I had become. I’m not addicted to it and am not showing any signs of addiction but I have had some unpleasant withdrawal symptoms as I’ve slowly reduced the dosage.
I initially dropped from 30mg to 25mg twice a day for 2 weeks. That went fine so I then dropped from 25 to 20mg twice a day. It’s fair to say that was not so good. I guess because the actual percentage drop was bigger or perhaps my body actually noticed the drop.
I had a raging headache, felt spaced out and disconnected, I felt even more tired and also nauseous. After a couple of days I went back to 25mg to re-think the plan.
After another week I felt brave so I dropped my evening dose to 20mg but kept the morning dose at 25mg. This seemed to be more successful.
I did a bit of research and found a chart that said I should be able to drop 5mg per week from morning then evening doses. So about 12 weeks to come off it completely.
Long story short I’m now at 10mg in the evening and 15mg in the morning. This is about 8 weeks in to my tapering down process.
I knew it would be slow but I didn’t release how crappy it would make me feel. The worst bit is more joint and muscle aches that could be a withdrawal symptom or a side effect of the nivolumab. Also, reducing the opiate intake means another immunotherapy side effect is now unfortunately present, an upset stomach. Luckily I already have meds for this and was warned it was the most likely one to get right at the start of treatment but the large dose of opiates had countered that the opposite way.
I’ve now giving it at least a week in between dosage drops to allow myself to get used to each stage so expect this will take another 5-6 weeks+
I’m hoping to try again to get back to some work in a few weeks and this transition is a key part of that. The fatigue isn’t going anywhere all the time I’m on the Nivolumab but I should be able to reduce the impact and deal with it a little better.
The cancer journey is littered with things sent to challenge you and this is just another one of those things.
Iām sitting here with immunotherapy treatment number 10 slowly dripping into my veins. Iāll be here for an hour and do this every month.
Everything seems to be running on time today and Iām plumbed in within 10 minutes of arriving and my Nivolumab, which is only made up when I call them to confirm Iām coming for my appointment was here waiting for me.
Itās also nearly 9 months since my initial diagnosis and since then there have been a lot of ups and downs with recent months spent just ātreading waterā, managing fatigue as best I can and reducing oxycodone very slowly (to help alleviate some of the fatigue)
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