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Had a Thoracoscopy plus insertion of sterile talc 3 weeks ago and diagnosis of Pleura Mesothelioma received last week.
As most of you have probably done it was then read and research time.
Loads of similar treatments discussed but quite a variety of medical opinions as well.
I noted that various surgeries were advocated especially on sites in the US where private health care is dominant and could well be business/money driven rather than in the best interests of sufferers.
Chemo with and without surgery seems to be the main option in the UK but nearly always with the message that it is for pallitive purposes as there is no known cure yet.
Next reading was on alternative "treatment" but this was, as expected, big snake oil promises to relieve us of our money in our desparation to live as long as possible.
The only one that appealed was FICO RSO Oil which by coincidence I found out was being used by several people that my family were friends with.
I discussed it with the Lung Nurse (horrible title!) who obviously would not endorse using it but more or less agreed that it probably would not make my condition worse.
So my question is if anyone in this group has had experience with using it?
Hi, my husband tried cbd in capsule form. It was done as at a slow increase up to 1mg. He tried it for about 3 weeks but felt very tired and dizzy and felt it wasn’t worth it as was wary of going out, driving etc. His blood pressure also dropped quite a lot. Everyone will react differently. He has had chemo and did ok on that, not as bad as he was anticipating and it did shrink his Meso quite a lot although after 5 months has grown again. I don’t know where you live but we have found the local mesothelioma uk meetings invaluable, we go to the one in Leeds (not on at moment with the virus) but they hold a zoom meeting now. Hope that helps. Best regards. Karen
Hi Karen and thanks for your reply.
The info about the mesothelioma uk meetings was appreciated..I will see what is about in my area.
Mesothelioma uk will be able to advise you on possible local meetings, ours is messy.org.uk.
Since your reply telling me that your husband had tried the cannabis oil would you mind if I asked you a couple of questions about that?
Hi Bill, I don’t mind at all. Ask away
Was the oil prescribed by your Oncologist and if so was it in response to a request from you or did he suggest it's use for your husband?
Do you still have the container it came in as I would like to know exactly what the composition of the oil was?
Can you remember the quantity prescribed and the recommended dosage?
Hi Bill. It was not prescribed by the oncologist, it was sourced privately. It was made by someone reliable who is into alternative medicine so they are just capsules that were made up with 7 days sent to us at different strengths to become used to it slowly. I haven’t heard of anyone getting medical cannabis for this condition through their nhs or private oncologist.
I also have a reliable source so need to make a decision.
Can I ask at what point in his illness you tried using the oil ?
I’m sorry Bill I don’t know the ratio. He is 15 months since diagnosis and tried it January this year after being told it was growing again. karen
Thanks for all of your replies..it is appreciated.
Did he have surgery or only use the oil? Thanks
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