The C Word and Lisa Lynch

About an hour ago I watched the short drama on the life and cancer of Lisa Lynch of 'Alright Tit' blog fame and her book 'The C-Word' and remembered why I was feeling so dejected all of the art events this week were something to strive for something to bring hope and joy, watching the film brought back the whole horrible terrifying experience of having cancer and living with it, I could relate to all her pain, emotional suffering, and heartache all the shit she had to go through like chemo, surgery, radiotherapy only to be told that the 'Bullshit' as she called it had returned.  If you haven't watched this its on the iplayer its moving, it makes you cry, but its real, honest depiction of the insanity of a secondary breast cancer dx, I could relate to all of it from finding out and having to tell everyone to going through horrendous chemo and surgery all of it was exactly how I remember it, somehow seeing it on TV makes life seem even more precious and fragile than it already is. Its reminded me to be thankful for all that I have including the chance to fail at a miserable art competition how unbelievably unimportant it all is. All we have is our relationships our friends and family thats all that is important. Lisa Lynch died in 2013 after fighting secondary breast cancer for the record ITS A MOTHER FUCKER.... and I FUCKING HATE IT!!!

Here's the link to Lisa's brilliant blog http://alrighttit.blogspot.co.uk and to the iplayer film 

http://www.bbc.co.uk/iplayer/episode/b05tr05b/the-c-word

Whole Body Photodynamic Therapy.....Amazing Results......

Found this post on the BCC forum informing of a new therapy called Photodynamic (PDT) the peice is so well written and describes exactly what the treatment is, does and more importantly how it works.  and believe this would benefit anyone faced with advanced stage IV cancer who has given up hope I'm also posting this here so that I can find it again if I need to. It seems like a lot to read but its so worth it, utterly amazing.

The treatment is called whole body photodynamic therapy (PDT) and it’s pretty amazing. For most people it is painless, non-intrusive, has no side effects, and can be repeated as many times as necessary until the cancer is gone with no reduction in effectiveness. It seems to work on all types of cancer, is used as a first line treatment for primary cancers as well as on very advanced cancers, and for many patients it even initiates an immune response that can help the body to start fighting the cancer itself. Results have been astonishing, with many stage 4 patients experiencing complete remission – it’s too early to tell whether it is a cure for advanced cancers, but I’ve talked to oncologists working in the field who believe it is.

To explain how it works, I need to back up a little.Conventional localised (ie not wholebody) PDT has been available for over a hundred years, has a success rate of 98%, and is widely used for skin and oesophageal cancers. The inventor got a Nobel Prize for his work. It works by introducing a Photosensitising Agent (PA) into the tumour, which as the name suggests makes the cells sensitive to light in a specific spectrum. Most PAs are based on chlorophyll from plants, so are totally harmless to normal cells. The PA enters the cancer cells, and when exposed to light of a certain wavelength a chemical reaction occurs, which produces singlet oxygen. If the light source is strong it produces enough singlet oxygen to literally pop the cancer cell and destroy it immediately - the process takes 45 seconds. If the light source is weaker, it can damage the cell enough that it will eventually die. The limitation of this treatment has been that it can only be used on cancers very close to the skin or where a light probe can reach them like the throat, because the light wavelength used only travels a cm or so into the body. Also the PA can leave the area treated sensitive to light for many months, so patients have to stay inside or buy a burka! The huge new development is that the Russians and Chinese, after over 20 years and billions of pounds worth of research, have developed PDT into a system that can be used to treat the whole body in the way that chemo does, but without damaging healthy cells, hence no side effects. This is pretty much the Holy Grail of cancer therapy.

The system available in China (http://www.nextgenerationpdt.com/ )uses a PA based on spirulina. You ingest the PA by drinking a foul green liquid, and also breathing it in through a nebuliser. The PA has been chemically engineered to lodge in all cancer cells, but to leave healthy cells after 10 hours – it will also cross the blood/brain barrier to work on brain tumours. As the PA leaves healthy cells so quickly, there is no issue with leaving the body sensitive to light – I was sunbathing by the hotel pool immediately after treatment! So the day after ingesting the PA, when it has left all healthy cells, the whole body is exposed to a light source in the near infra-red spectrum that can travel up to 10cms into the body. You lie a lightbed similar to a sunbed, with LED light directed from every angle. The 10cm light penetration is enough to get to every area of the body for a normal sized person, and to kill individual cancer cells circulating in the bloodstream. In addition, areas of concern or known tumours can be treated with strong localised lasers. Large or deep seated tumours can be treated with an interstitial light probe directly into the tumour.

The protocol for treatment depends on the severity of the cancer – I just had the lightbed and lasers, so it was painless and non-intrusive, with no side-effects. The interstitial probes can be uncomfortable for a few seconds, and large tumours will swell as they break up which can cause discomfort and some feel feverish for a few days – this is the start of the immune system recognising the cancer. A single course lasts 8 days, with 4 light treatments. The recommendation for advanced cancer is 3 courses of 8 days each, with a two week gap in between each course.

There are some limitations to the treatment, for example if a tumour is situated where the swelling could be dangerous (ie too near the heart), or if it is wrapped around a major blood vessel that could rupture as the tumour disintegrates, it would be too dangerous to treat. They also specify a minimum life expectancy of 3 months as the treatment can take time to work on very large tumours – people for whom it has been unsuccessful are generally those where the cancer was advancing faster than the PDT could work. Bone tumours are also harder to treat than soft tissue as light can’t travel as far through bone.

I was treated at a clinic in Guangzhou called Next Generation Photo Dynamic Therapy (NGPDT), which is owned and operated by an Australian/ Chinese company. They are a private clinic with patients coming from all over the world, and are planning a major expansion into 63 countries – they hope to be in the UK within 2 years. A similar but not identical system is available in Chinese hospitals for locals. A recent trial of NGPDT in Beijing on advanced lung cancer patients, who usually have a very poor prognosis, had 1 and 2 year survival rates of 94% and 71% respectively, compared to 68% and 32% for the control chemo and rads group. The NGPDT patients had complete remission in 56% of cases, and partial remission in a further 21%. Details here:http://meetinglibrary.asco.org/content/113379-132. A second trial in Australia on prostate and bladder cancers is in phase 2, and when complete should satisfy the regulatory requirements to bring the treatment to the UK.

When I was in China I met people being treated for a large range of cancers, most were very sick and had exhausted all other treatment options other than palliative care (I was not their typical patient, having a very light cancer load). These are the hardest cases to treat, weakened by years of chemo, but even so, everyone I met seemed to be responding. An Australian woman with a large inoperable brain tumour had a 60% reduction in tumour volume after 2 courses of treatment, and was regaining speech and balance. An Irish guy with lung cancer that had spread pretty much everywhere (he described his PET scan as lighting up like a Christmas tree) had cancer in only 1 lymph node after 3 courses. An American guy with large lung tumours described having an interstitial probe and being able to hear the tumours fizzing as they dissolved, and an immediate relief from the pain they were causing. I could go on and on – but you can see some of these people yourself being interviewed on Youtube.

As for me, I had no active tumours big enough to show up on a scan when I was treated, so there is no way of knowing how successful it has been – I will have to wait and see. Although I am currently NED having successfully treated bone and liver mets, I know my cancer will recur at some stage, so this treatment was an attempt to prevent that. I went with the blessing of my onc, who had wanted me to have a course of chemo following my liver ablation. I declined the chemo and had NGPDT instead. I have decided never to have chemo or rads again. I only had one course of NGPDT treatment – not the 3 they recommended. But if I need to go back for more I will be on the next plane to China. My hope is that one course will be enough to keep me well for a couple years, and by that time I’m hoping NGPDT will be available in London. In China, the worried well are having NGPDT to prevent cancer – it’s no more onerous than using a sunbed for half an hour!

Also found these links on the subject http://www.uclh.nhs.uk/OURSERVICES/SERVICEA-Z/CANCER/CANCERTREATMENTS/PDT/Pages/OtherPDTworkatUCLH.aspx
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773165/
http://www.patient.co.uk/support/PDT-For-Cancer-Cure-Ltd.htm
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Othertreatments/Photodynamictherapy.aspx
http://www.cancer.gov/cancertopics/factsheet/Therapy/photodynamic
http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/other/photodynamic-therapy-pdt
http://www.killingcancer.co.uk/home.asp
http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/photodynamic-therapy

Refreshed but still worried

Been away visiting for a week up in Weston-super-Mare, saw all my old friends and stayed with my parents, feel quite refreshed now even though I was very naughty eating chocolates and drinking lots of tea and coffee all the things I'm supposed to of given up, now I'm back home and drinking the green juice, don't get me wrong its powerful stuff and I think really works, but it was so nice to feel normal going out and having lunches just being normal. Its certainly works wonders a trip away, unfortunately the trip was saddened by the sudden passing of my best friends dad, we'd travelled up together and now she's stuck there looking after her mother who has motor neurons disease, I asked her what I could do for her but really there is nothing I can do other than just be here for emotional support, due to this unforeseen circumstance I shall probably be going up to Weston more frequently.

Slightly worried cause I got a persistant itch on my mx site :0( the nurses at the hospital said they thought it was probably to do with the rads but I'm not so sure and really really need to have a ct scan last one was in Oct last year since then I've done 3 weeks of rads and been on tamoxifen and herceptin all of these could of had some impact on the stuff on my lungs. I have been to my GP and asked him to write to my Onc. about a ct scan but still no reply, so niggling in the back of my mind is the need for a ct scan and the constant worry this brings. Every ache or even slight pain is a source of worry, living with cancer is so hard not just physically but emotionally. Sorry this post ended up a bit negative but thats how I feel.

End of the rads tunnel is in sight!

Did my rads first thing this morning, not going too bad getting used to putting my arm in the position, only 5 more sessions to go then I'm done YAY. Had my Herceptin IV, they are now arranging for me to have this at home, which would save me going to the hospital and the less time I spend in there the better.

Attended a skin clinic after rads session yesterday was told my skin looked fine and too be honest only a small amount of physical discomfort to report, still using my Aloe Vera Gel 99.9% bottle this seems to be keeping my skin in good condition and not too sore.  Tiredness is another issue, I am feeling very very tired in the afternoon's and if I am at home I have a snooze for half an hour, I find this really helps and keeps me going until bedtime.

The weather is really bad today so I didn't go anywhere after rads just did my food shopping and came home. Had a rather lovely chat with a couple of ladies in a charity shop, the manager knows me but has not asked me what is wrong with me ever since I've been dx she commented that I did not have my hat on and that my hair looked good, another lady in the shop commented that she thought my hair looked really good and was considering having her hair cropped like mine, little comments from well meaning strangers can go a long way to making you feel better :o)

Stroll on next wednesday when finally all the treatments will be done.

The day from hell!!!

Yesterday I woke up with a banging migraine headache accompanied by the usual nausea/sickness I say usual cause before I was thrown into early menopause by the chemo I used too suffer this migraine/sickness every month with my period, so yesterday woke up feeling terrible and this time was actually sick so phoned the hospital to tell them I was sick cause I am on day 3 of rads, the radiographer told me to still come in as the drs would want to see me, eventually made it into hospital (takes 45 minutes to get there) and was sick on the way twice, saw my onc (which surprised me as I never get to see him its always his registrar) told him about my history with migraines and periods but he decided we needed to scan my head, What!!! just to make sure I didn't have cancer on the brain!!!! What!! This thought never crossed my mind and totally freaked me out understandably, so no waiting 2 weeks for an appointment in to the CT scanner straight away I didn't have to drink the nasty tasting drink they give you straight on the ct scan bed for a brain scan within an hour they told me it looked fine and that I probably did just have a migraine, then I saw the registrar who was concerned that I may have meningitis ummmm where did that come from meningitis!! During all of this I was being sick almost on the hour every hour running into toilets in the hospital and throwing my guts up, it was the 2nd worst day of my life I say 2nd cause DX day get's to be the 1st and worst. I tried to take some pain killers for the migraine but they didn't work and I threw them up anyway, eventually my onc came back to me and said I could either have my rads treatment or go home I choose to go home and crawl into bed where eventually I managed to get rid of the headache and with that gone the sickness went. What a day tho, I mean it was an utter nightmare from beginning to end. I think maybe it was my usual migraine/sickness/period thing but I haven't had a period for 9 months and I am still on herceptin and tamoxifen, I'm wondering what triggered it, maybe the rads will enquire further and keep posting.