I’m four years post diagnosis/surgery and luckily have been enjoying life to the full since being given the ‘all clear’ 3.5 years ago.
I have recently started to suffer with EHS (electromagnetic hypersensitivity) and it’s been an absolute nightmare, not helped by the fact that in the UK it’s not recognised by the NHS.
I have read articles online that it can be linked to heavy metals in the body and was wondering if anybody else who has had carboplatin for treatment has developed similar issues.
Carole x
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Carole666
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Not so far, no, although I only completed my chemo recently. I did, though, have a friend 15 years ago who has this problem (she's never had chemo), and yes, it is a nightmare. We lost touch when she moved house into the sticks to be away from as much electro magnetic stuff as possible, and also stopped using the internet and smart phone,so I don't know how she is now... We used to meet up in London, but that stopped being an option years back because of her condition - she'd be unwell for days afterwards.
Thanks for the reply Miriam yes it’s been an absolute nightmare, even worse than my cancer diagnosis was! Still, I’m trying to keep positive, Fortunately I have managed to calm my home environment sufficient to feel almost normal again, but haven’t had a chance to try outside environments yet due to the current Covid situation
I will admit to having to look up EHS but your suffering so long after chemotherapy struck a chord.
My last appointment with a rheumatologist finally produced a verbal admission that my joint pains could be due to previous chemotherapy - including a full course of Carboplatin and a second course that had to be stopped due to an allergic reaction. However, this admission never appeared in his follow-up letter.
I have read two scientific papers on the subject of long-term effects of chemotherapy drugs but if you are in the UK, and your post suggests that you are, you are unlikely to find a health professional to admit to it, I fail to understand why.
I also had Pacletaxol and Avastin, and my chemo courses had only 6 months between them. My last chemo drug was in 2018 and I’ve had joint pain, tinnitus and debilitating fatigue (plus a few other minor symptoms) ever since. There has been no diagnosis but mention of ‘fibromyalgia-like symptoms’ with a denial that it IS fibromyalgia.
My Oncologist is only interested in cancer (and raised liver enzymes) and my GP simply points out that I do still have OC even though not showing on a scan and my CA123 is only 23!
The latest treatment has been a prescription for Hydrochloroquine, which is given for rheumatoid arthritis, which I’m told I don’t have! My bloods do show inflammation but not THAT much.
I don’t suppose there is ANY medical treatment for EHS, is there?
How many others are suffering long after their chemo has ended?
Many thanks for your reply Iris. It’s certainly a tricky one as EHS is not recognised in the UK. I’ve yet to refer it to my GP as I don’t believe I will get a satisfactory response, but when I did run it past my oncologist over the phone he was totally disinterested.
I have spent weeks trawling Internet trying to find a self-help solution and have been able to put in place several changes to my environment that have certainly helped and a couple of holistic things in the hope that they will help.
I now sleep grounded every night, which is supposed to be beneficial for general pain and inflammation as it floods the body with negative electrons which scavage free radicals, and I take high Anti-oxidant supplements (molecular hydrogen) plus a natural calcium channel blocker (Magnesium).
As a positive person I’m delighted with the silver lining in what has been a very dark cloud. My skin has improved no end, I look younger, I’m sleeping better, I no longer wake with a stiff neck, my migraines have improved by 90%, and my blood pressure has reduced slightly…. Just to name a few things😁
I have a ‘grounding’ or ‘earthing’ sheet under my bedsheet. This is connected by wire to an electrical socket using a plug with only an Earth pin in, alternatively it can be connected to a grounding rod placed directly into the Earth.
Following is a link to a very interesting 15minute documentary on the basics of grounding
Oh,I remember those being sold at an Alternative Medicine exhibition some years back, long before I had cancer - I will watch the video,thanks for the link.
Oh Iris,sorry to hear of your sufferings,but I'm not surprised. Nor am I surprised at the reluctance of medical professionals to put pen to paper and say chemo might or probably is a cause. The trouble is, the drugs they give us to keep the cancer at bay carry a high price,or can do - as my Oncologist said, basically, he's filling me up with poison that will damage healthy cells as well as cancer cells. But its a stark choice - if you want to keep on living, then that's the treatment, along with the side effects and long term damage,they don't have much else. This is the reason I initially refused chemo 2 years ago after surgery; I decided I'd choose quality of life over quantity, but Covid forced my hand this year - palliative care was patchy and thin on the ground just at the point when I started to need it - the only thing on offer was chemo to reduce symptoms. So I gave in and had 5 infusions of carboplatin (I still refused paclitaxal) which has done the trick - for a few months anyway.
The aim of oncologists is to keep the cancer at bay and you alive for as long as possible, side and long term effects regardless I'm afraid, that is their focus.
I don’t necessarily believe that it’s down to my chemo but that it could have possibly played a part.
I also have to consider the significant amount of ionising radiation I have been exposed to following all the CT scans et cetera that I’ve had over the last few years.
At the moment it’s all just guesswork, I could just be one of the unlucky ones who are hypersensitive to electrical frequencies.
Following all I have read recently I believe that unfortunately there will be a lot more people like me once they roll out 5G
I think its a problem that can occur for no particular reason, the same way a person can suddenly become allergic to something as time goes by, so yea,might not be linked with chemo, but worth asking in case its more common in people who have had chemo. I'm desperately trying to remember where this is accepted as a condition - Sweden maybe,can't quite recall.
I’ve never thought about all the CT scans possibly being a problem. I guess we have to do the best we can for ourselves, certainly it helps to exercise.
I’m really sorry for your situation - I’m glad the grounding blanket has made a difference. While the EHS could be Carboplatin, it could also be one of the
other ‘helpful’ drugs that medics use, [edited by moderators.]
Carboplatin could be a candidate, as the platinum element is by no means as neutral and unreactive as is claimed. Having researched it when I was being urged to have a platinum-based implant as a replacement tooth, I refused, even though it meant a lasting gap in my teeth. Faced with OC, though, I don’t think I have a choice, so I’m going ahead with Carboplatin- though not, at the moment, Paclitaxel.
The reason I mention other chemicals is that there are a number of people, including Dr Catriona Walsh, a former paediatric consultant in Ireland, who believe they have been permanently damaged by gadolinium, the contrast agent in MRI scans. I came across her website while looking for recipes for my husband, (who has RA and benefits enormously from the Autoimmune Protocol diet, but was made ill by hydro chloroquine), so I have not checked it out in detail. I did follow up with a quick check for scientific studies, and found a number of studies citing hypersensitivity.
Whatever the root cause - and don’t forget that our cancer can be pretty good at undermining our health by itself - I can only sympathise and maybe suggest looking into ways to reduce your body’s heavy metal load.
I’m hoping that some of the other women here may be able to suggest ways to help. I personally have found cranial osteopathy after chemo extremely helpful, for example in getting my liver, lymph, bowels etc moving. You do need a good one, fully qualified as an osteopath and then with additional cranial and visceral training, so try and get a recommendation.
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