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I haven't been on here for a while, I lost my lovely husband on 8th September this year after an 18 month non stop fight with a rare oligodendroglyoma tumour.
During the early days I did some research into a virus called sv40 which has been linked with rare brain and bone tumours. There is not a lot of information available in the UK, most of it is from sources in the US where there are ongoing law suits, as the virus is widely suspected to have been contracted by those given contaminated polio vaccine during the late 1950's and early 1960's.
My husband and I checked into his medical records and found that he was given this vaccine, which goes by the name of the "Salk vaccine" after the person who developed it.
It has been suggested that a person who is positve to this virus (testing not available in the UK so far as I am aware) may not respond to conventional radiotherapy treatment or chemo and that it might actually cause the tumour to get worse (it binds to p53 in the cancerous cells and makes them mutate)
To cut a long story short, my husband was diagnosed with a tumour in April last year after a grand mal fit. He had surgery to remove his right temporal lobe, biopsy showed a grade 2/3 oligodendroglyoma. For a while he felt better than in months, then he had 6 weeks of radiotherpay which made him very unwell. A scan in October last year showed a possible problem, a repeat scan in January this year showed some regrowth. He started pcv chemo but was so unwell prior to the third cycle that a scan was taken-this showed a large regrowth. Surgery in June was followed by Temadol chemo but this was discontinued after just one cycle as he was so unwell and his oncologist could see that the tumour was back.
Surgery in June gave a biopsy report that his tumour had transformed to a highly aggressive sarcoma grade 4, there was no evidence of the oligodendroglyoma left due to mutation. Even the pathology report gave the impression the scientists were shocked.
Just eleven weeks later my brave man died a horrible death-there's nothing peaceful or romantic about it when it happens. I'll never forget the sound of him struggling to breath and cough away secretions- they tell me he wasn't aware but I'm so afraid he was.And I can't stop feeling bad that he went through all that treatment and it may have made him worse. We did what was recommended because we thought it would buy us more time, we have two sons age 5 and 8 months.
My husband's tumour did not at any time respond in the way expected by the doctors (ie this type of tumour responds well to radiotherapy -it didn't... this type of tumour respnds well to pcv-it didn't)
I have my suspicions that he may have been positive to the sv40 virus I have mentioned, probably a large number of other people are too- if this means that in the event of developing a tumour, conventional treatment may make them more ill, shouldn't we all know if we have it in order to make an informed decision?
I hope that this post doesn't upset anyone, I know it's a bit controversial, but I would like to know if anyone else has heard of the virus or thinks like I do that there is a connection here?
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