This year's Mesothelioma Patient and Carers Day on 1 October was packed with useful information. I imagine that there will be a report on the Mesothelioma UK website at some time, but here are the things that we found very helpful:
One of the problems with standard systemic chemotherapy is (a) that it works better for some than others and (b) it affects all fast growing cells in the body, hence the nasty side effects. Jeremy Steele (Oncology Consultant St Barts) talked about targeted/individual treatment, which aims to switch off and maximize damage to cancer cells, whilst minimizing damage to healthy cells and boosting anti-cancer defences. The key is to find the "switch" to trigger the suicide mechanism in cancer cells (apoptoisis, to use the medical term).
Work is progressing on gene therapy as a way to correct genetic abnormalities which cause cells to keep growing, such as the ADAMS trial at St Barts, Guys and Southampton. The SKOPOS trial in Cardiff combines chemotherapy with the TroVax vaccine which tricks the cancer cells into becoming more visible and therefore more vulnerable to attack by the body's own defences. The Meso-2 trial of STA-9090 (ganetespib) works on the same principle, I believe. I have added a new section on the right with links to these clinical trials, which will be updated as and when I hear about more. Please let me know if you are on a trial which isn't listed and send me a link!
Lastly, Jeremy Steele talked about the Biobank, based in Cambridge, which is a database of meso cancer biopsy samples for use in research into genetic mutations.
Mary Hesdorffer talked about experience in the USA. There is much helpful information on the Mesothelioma Applied Research Foundation website Curemeso (I have added a link under Find out more on the right). It is a sad fact but true, that whilst the USA has a huge database of clinical trials throughout the world, the coverage for trials in the UK is patchy to say the least. There isn't a single comprehensive source of who is doing what in this country. Even Mesothelioma UK doesn't know about all the clinical trials going on here which relate specifically to this disease. A yawning gap to be filled. Is it surprising in these circumstances that mesothelioma patients and carers turn to social networking sites like Facebook to find out what's going on!
Listening to Michael Lees talk about Asbestos in Schools is both a pleasure (such knowledge) and a pain (the time bomb awaiting our children, teachers and support staff exposed to asbestos in educational establishments is seriously scary). There is a link to the website on the right. Visit this site if you have children, partners or friends who have spent time in system-built schools from the 50s, 60s, 70s, or older buildings refurbished during that time when asbestos was used extensively for insulation, fire-proofing, lagging, floor and ceiling tiles and such like.
Helen Clayson's session on understanding pain was an eye opener. The first step should be a proper assessment of the pain (type, severity, cause) followed by selection of the appropriate medication based on the individual's needs. Patients need to be given both information about and instructions on how to use the medication, including managing side effects. I would have though this was standard practice, but it appears not (gulp!) Regular reviews are needed to see if its working, adjusting and refining the approach to pain management as necessary and prompt referral to a specialist if things go wrong. All sorts of pain relief were touched on, depending on the type, source and severity of the pain, including morphine; cordotomy (killing the nerve which carries the pain if the body does not respond to other things); the use of local anesthetic patches; anti-inflammatory drugs such as ibruprofen and radiotherapy in some cases.
Liz Darlison drew our attention to a useful booklet about managing breathlessness, a joint production by MacMillan and Cancerbackup, which includes a CD Relax and Breathe, while Julie Robinson persuaded most of us to stop feeling self-conscious and join in the chair-based exercises in the Move it or loose it session! Tony Whitson gave a helpful update on Benefits and Hayley Richardson talked about the British Lung Foundation's Action Mesothelioma campaign, designed to raise awareness in the DIY community of the risks of disturbing asbestos. Link added under Raising Awareness.
One of the highlights of the day for us was a talk by Peter Szlosarek, another Barts oncology consultant, on the subject of clinical trials in the UK for people with mesothelioma.
This talk put more flesh on the bones of the ADAMS trial, mentioned earlier in the day by Jeremy Steele. If you want to find out more about taking part in this trial e-mail Peter at adam@qmcr.qmul.ac.uk He aslo gave a useful jargon buster to help understanding typical trial types:
One of the problems with standard systemic chemotherapy is (a) that it works better for some than others and (b) it affects all fast growing cells in the body, hence the nasty side effects. Jeremy Steele (Oncology Consultant St Barts) talked about targeted/individual treatment, which aims to switch off and maximize damage to cancer cells, whilst minimizing damage to healthy cells and boosting anti-cancer defences. The key is to find the "switch" to trigger the suicide mechanism in cancer cells (apoptoisis, to use the medical term).
Work is progressing on gene therapy as a way to correct genetic abnormalities which cause cells to keep growing, such as the ADAMS trial at St Barts, Guys and Southampton. The SKOPOS trial in Cardiff combines chemotherapy with the TroVax vaccine which tricks the cancer cells into becoming more visible and therefore more vulnerable to attack by the body's own defences. The Meso-2 trial of STA-9090 (ganetespib) works on the same principle, I believe. I have added a new section on the right with links to these clinical trials, which will be updated as and when I hear about more. Please let me know if you are on a trial which isn't listed and send me a link!
Lastly, Jeremy Steele talked about the Biobank, based in Cambridge, which is a database of meso cancer biopsy samples for use in research into genetic mutations.
Mary Hesdorffer talked about experience in the USA. There is much helpful information on the Mesothelioma Applied Research Foundation website Curemeso (I have added a link under Find out more on the right). It is a sad fact but true, that whilst the USA has a huge database of clinical trials throughout the world, the coverage for trials in the UK is patchy to say the least. There isn't a single comprehensive source of who is doing what in this country. Even Mesothelioma UK doesn't know about all the clinical trials going on here which relate specifically to this disease. A yawning gap to be filled. Is it surprising in these circumstances that mesothelioma patients and carers turn to social networking sites like Facebook to find out what's going on!
Listening to Michael Lees talk about Asbestos in Schools is both a pleasure (such knowledge) and a pain (the time bomb awaiting our children, teachers and support staff exposed to asbestos in educational establishments is seriously scary). There is a link to the website on the right. Visit this site if you have children, partners or friends who have spent time in system-built schools from the 50s, 60s, 70s, or older buildings refurbished during that time when asbestos was used extensively for insulation, fire-proofing, lagging, floor and ceiling tiles and such like.
Helen Clayson's session on understanding pain was an eye opener. The first step should be a proper assessment of the pain (type, severity, cause) followed by selection of the appropriate medication based on the individual's needs. Patients need to be given both information about and instructions on how to use the medication, including managing side effects. I would have though this was standard practice, but it appears not (gulp!) Regular reviews are needed to see if its working, adjusting and refining the approach to pain management as necessary and prompt referral to a specialist if things go wrong. All sorts of pain relief were touched on, depending on the type, source and severity of the pain, including morphine; cordotomy (killing the nerve which carries the pain if the body does not respond to other things); the use of local anesthetic patches; anti-inflammatory drugs such as ibruprofen and radiotherapy in some cases.
Liz Darlison drew our attention to a useful booklet about managing breathlessness, a joint production by MacMillan and Cancerbackup, which includes a CD Relax and Breathe, while Julie Robinson persuaded most of us to stop feeling self-conscious and join in the chair-based exercises in the Move it or loose it session! Tony Whitson gave a helpful update on Benefits and Hayley Richardson talked about the British Lung Foundation's Action Mesothelioma campaign, designed to raise awareness in the DIY community of the risks of disturbing asbestos. Link added under Raising Awareness.
One of the highlights of the day for us was a talk by Peter Szlosarek, another Barts oncology consultant, on the subject of clinical trials in the UK for people with mesothelioma.
This talk put more flesh on the bones of the ADAMS trial, mentioned earlier in the day by Jeremy Steele. If you want to find out more about taking part in this trial e-mail Peter at adam@qmcr.qmul.ac.uk He aslo gave a useful jargon buster to help understanding typical trial types:
- drugs ending in "mabs" involve anti-bodies
- drugs ending in "nibs" starve the tumour of blood
- drugs ending in "mus" are blockers or one sort or another
- vaccines usually involve anti-bodies or dendritic cells
- the ADAMs trial drug is based on enzymes
The day finished with a session by Natalie Doyle about keeping up your spirits and a wonderful quote "being happy doesn't mean that everything is perfect. It means you have looked beyond the imperfections." I'll drink to that!
I've left the two most important people to last: the patients. Debbie Brewer who inspires us all and Suzanne Philbin-Jeng, who plucked up the courage to talk about peritoneal mesothelioma - even more rare than pleural mesothelioma. You are both brilliant examples to us all! Thank you.
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thanks for an excellent update Linda, especially all the info on the trials, it seems amazing there is no one site that lists them all in the UK.
ReplyDeleteIn these days of databases and wen based technology, sharing info should be the easier part of this story.
Amanda