All this week I’ve 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. I’ve never understood why it comes and hits me out of nowhere. But depression doesn’t 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. I’m just existing at the moment and really can’t 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 don’t 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 can’t 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 doesn’t help. It just tells me at best I might see 60. If I’m 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 I’ve got another round of treatment to look forwards to next week. I know that’s going to make me feel rough for a few days.
I wonder why I’m still taking treatment that takes away all the energy I have. It may give me more time but at what cost? It’s never going to stop unless it stops working. Then what?!
I’m not brave. I’m a coward. I don’t like feeling pain and I don’t 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 I’m 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: 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.
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.
I’m sitting here with immunotherapy treatment number 10 slowly dripping into my veins. I’ll be here for an hour and do this every month.
Everything seems to be running on time today and I’m plumbed in within 10 minutes of arriving and my Nivolumab, which is only made up when I call them to confirm I’m coming for my appointment was here waiting for me.
It’s 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 “treading water”, managing fatigue as best I can and reducing oxycodone very slowly (to help alleviate some of the fatigue)
That’s what I need to say to myself. Yes, I have cancer but it could be so much worse. I’ve spent months feeling sorry for myself because I’m a bit tired and can’t work but I have to focus on the fact I have it easy.
Really the only side effects I have from my immunotherapy is chronic fatigue and some joint aches. Of all the side effects I could have these are the ones I’d want. There’s no pain, no organ issues, no other illnesses or “itis’s”. I’m not feeling sick I have full mobility. AND it’s working for me.
Reading some online blogs and forums it could be so much worse. I AM very lucky.
Yes, fatigue is hard. Pull your socks up Davis and kick this things arse. Sleep when you need to sleep but stop feeling sorry for yourself.
Treatment number 9 today and it doesn’t get any easier. I spend the day really anxious as I know it’s going to be unpleasant for a day or two afterwards. But it’s working and therefore worth the discomfort.
Today’s treatment was made worse by them not having my appointment for today but instead had it as tomorrow. They fitted me in but I had to wait 90 minutes for the nivolumab to get made up. Then, for some reason my left arm was not accepting the drip very fast and it took another 90 minutes to take the infusion that should only take 60 minutes. I was shattered when I got home.
My most recent scan has showed further reduction in the kidney tumour since January of on average 1cm on each side so it’s now approx 4.3cm on the shortest side and 5cm on the longest. Almost a cube.
The nodules on the lungs are still stable, so no growth or shrinkage.
I’m not as excited this time at the news as I’d rather not have a tumour at all and rather not keep taking the immunotherapy every month. Yes it’s reduced in size significantly since the start but the treatment is taking it out of me and there are days when I wonder if it’s worth it.
I’ve had days where the fatigue is stopping me doing anything at all. I’ll wake up, be awake for an hour or so then sleep for the rest of the day. That’s not a great existence.
I can’t work and I feel guilty doing anything that’s not work. I’m paranoid someone will see me walking the dogs or trying to tidy the garage or riding my motorbike and report me. They won’t obviously see me sleeping for hours on end afterwards though.
So I have a mental as well as a physical battle. And I’ve just been signed off from work again for the foreseeable future.
It’s been a shitty month or so. I’ve been signed off for work again due to the fatigue and have generally found everything just really hard recently. I’ve had to force myself to get out of bed on some days and try and keep some level of activity. Mood has been pretty low with a lot of soul searching.
I’ve had a couple of sessions with an occupational therapist to help manage the fatigue and work with it. This involves, planning, pacing, resting, breaking things down into small chunks. I’m slowly getting to grips with some of what she showed me but its hard when all you ever want to do is curl up and sleep.
I’m also slowly starting to reduce my dosage of oxycodone from 30mg twice a day to 25mg. The hope is that I don’t have pain any more and reducing the dosage will help with the fatigue as it’s a known side effect.
Annoyingly I’ve not yet seen any benefits from this and have uncovered a small amount of chest aching since the reduction. Also, strangely some withdrawal symptoms I think, with regular headaches and feeling a little ‘displaced’ sometimes. Or discombobulated (great word!).
But I guess the good news is that I’m still here. Although I often ask if this state is worth it. But I then kick myself for being so negative. I had a bit of a wake up call at the weekend when I looked in the mirror and a scruffy old man looked back. I’d stopped taking care of myself and it shows.
I try and look on the positive side but its hard with no energy. I guess this post is more for my benefit than anything else. A kick up the arse if you like.
One of the things that has always lifted my mood is riding my motorbike. It’s a drug free anti-depressant. I last rode my motorbike, affectionately known as “The Beast” ten months ago!. Covid and illness have meant it’s just been languishing in the garage with me occasionally checking it still starts.
There was a time at the start of my illness when is was expecting the worst that I was considering selling it as I really thought I’d never be able to ride it again. This really upset me, maybe more than my diagnosis itself.
Over recent months I’ve been desperate to ride it but knew I didn’t have the concentration, strength or the energy needed. I’ve been slowly working on increasing stamina with walking.
But yesterday morning I woke, the sun was shining and it was a little chilly. I was desperate to go for a ride. But I had an internal dialogue that said I couldn’t be riding my motorbike if I’m not well enough to work. But I knew riding my bike would help lift my mood, my spirits. But what if I can’t manage it? What if I drop it? I was scared. For about half an hour I was teetering on throwing in the towel and giving up any idea of ever riding my bike again.
In the end I just went for it. Slowly I wheeled the beast out of the garage, it started on the first press of the button. The sound made me smile. Carefully I backed down the drive and rode off down the road, wobbling slightly, the bike feeling very alien, VERY heavy.
I was struggling to get round bends, my balance was off, I’d forgotten how to counter-steer, I missed gear changes and fumbled throttle control. I nearly turned round and went home but I carried on.
It felt like I was sitting on the back of an elephant on a tightrope for a while but slowly it started to come back to me, the balance, the control, the wind in my face, the sounds, the smells.
Once the initial nervousness disappeared I realised the weight of the bike disappeared once I was moving.
I was out for a couple of hours and loved it. The hardest part was getting it back onto its centre stand in the garage where strength and balance is needed. After, I ached everywhere, knees, back, hips, shoulders. But I needed that.
It wiped me out though, completely. The concentration needed to ride a bike is taxing at the best of times but yesterday within minutes of getting off the bike I was struggling to stay awake. I was also feeling guilty about riding when off sick from work. But I have to keep working on getting my strength back, my stamina, by any means necessary. They will all help me get the better of the fatigue.
Katie asked me a question last night. “why can’t you work?” a simple question. but it made me think why can’t I work if I can ride a bike? why can’t I work if I can go for a walk with the dogs in the sun?
But the answer is that I can’t concentrate, or focus. I can’t stay awake for very long, my mind wanders, I make mistakes. It’s taken me hours to write this blog post and remove all the typos and mistakes. My brain is mush at the moment. Work needs 8+ hours a day of commitment, skill, finesse at a keyboard. It needs clarity of mind, the ability to plan ahead, juggle multiple tasks, troubleshoot problems. Right now I can manage a short amount of an activity but that then wipes out the rest of the day. I’m no good to anyone right now.
I need to keep building the levels of activity, any activity, while reducing the recovery times. This seems to be taking forever but it is slowly improving.
In other news, treatment number 9 is next week and I also hope to find out the results of the latest CT scan I had taken a couple of weeks ago. I don’t want to build my hopes too much but the last scan in January showed massive reduction in tumour size. I can only hope that improvement has continued.
I’ve felt good for a few months now. Tired but getting on with life with few side effects. I’ve been working and generally been positive about the future and feeling “normal” again.
This started to take a downward turn about 10 days ago with the fatigue slowly becoming more evident. Like someone slowly turning Fatigue Volume up in a daily basis.
Today I’ve barely been out of bed. I had my blood test done this morning for treatment number 8 on Thursday but then spent most of the day sleeping.
I’ve been worried about this all over the weekend with times when I had no energy and just moving was a monumental effort.
The hospice nurse suggested speaking to my Oncology team and they believe this is just normal side effects and that it does come and go without rhyme or reason. They’ll get the results of my blood tests tomorrow.
I also spoke to my GP who already had the results of my bloods taken this morning and was able to confirm they were all normal so nothing else is going on.
He suggested I may have been a little hasty in my return to work and suggested a slower approach would have been better. I thought I had taken it slow but he mentioned taking months to get back to full time, not weeks.
He’s signed me off work for another week and told me to listen to my body. So that’s what I’ll do. I feel guilty just being so useless, so tired and a drain on everyone around me. I hate letting people down and that’s what I’m doing at work.
But I can’t fight it. I have to let my body recover and deal with the aggressive treatment I’m having. Trying to do too much too quickly is, as I’ve discovered, a recipe for disaster.
I’ve posed my concerns on an online forum of people on immunotherapy and my symptoms are typical. Joint aches are normal. They come and go and if they get too bad I can be put on steroids (more drugs). The oxycodone is also very potent and can cause issues on its own. The fatigue can go from non existent to full on bed-ridden overnight with no warning.
I guess I’m slightly relieved it’s nothing new and others are in the same boat with the same symptoms but I’m also a little despondent that I thought I’d got away with bad side effects and finding out they can come back at any time and be worse or better without warning is tough to take.
Treatment number 6 tomorrow. I’ve done this 5 times already so am very experienced and know what’s going to happen.
So why am I scared stupid about my treatment tomorrow?
I know what if feels like, the side effects I’ll likely get and how long they’ll last.
I know about the cold sweats, headaches, leg aches, back ache, chest pain and fatigue that can last anywhere from a few hours to a few weeks.
I know about the uncomfortable feeling of the medication first circulating my body, the little bit of nausea and sweating after about 10 minutes that lasts just a few minutes.
I know I’ve been lucky not to have any of the major side effects that can accompany such a toxic and aggressive treatment.
So why am I terrified about treatment #6?
Could it be the fear it’s worked it’s magic and that’s it? I’m not going to continue responding? I’ve had my good news and now it has to be bad? That’s how life works isn’t it?
The truth is I don’t know. What I do know is that I’ve felt crappy all day, really tired and lethargic. My I think this is mental rather than physical.
Having treatment tomorrow is a reminder I’m still seriously ill despite feeling ok for a few days.
I guess I still have some adjusting to do to get used to this new normal.
I need to get used to 1-2 weeks of feeling crappy, 2 weeks feeling ok. To get used to a constant tight chest and aches in my lungs when breathing deeply. To get used to getting tired really easily.
I’ve been told these symptoms may get better over time but that’s long term.
Short term, this is it.
But you know what? I’m ok with that and despite this sounding a little like a pity grab, it isn’t.
I no longer have to fight to breathe, or have stabbing pains in my chest, or struggle to get out of bed every day. I no longer get kidney pains in my back or have no appetite (well maybe I could do with that coming back every now and then)
I also no longer have a constant dry hacking cough that annoys me and everyone around me causing me to double up and nearly pass out from time to time.
So yes I’m scared about tomorrow and that’s normal. That’s ok. This whole journey is scary. Life. Is scary.
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