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jupiter
2 Posts |
 Posted - 04/05/2014 : 15:33:59
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Hi I'm new to this forum and would like to contribute if I can on cutaneous t-cell lymphoma.
In 2005 I first developed CTCL which was misdiagnosed several times that I eventually researched myself comparing symptoms with images of patches/plaques with the aim of getting a definitive answer.
When my body area from waist down was covered with patches around 50% some confluent, on my feet, thighs, lower back and in between the crease of the butt I told my doctor that the patches might be related to mycosis fungoides [CTCL] and requested a referral to a London hospital that specializes and treats this type of skin cancer. On my doctor's referral and seeing the consultant there first time at this hospital, he was not sure at first as I also had an area on my foot that had red dots as well as patches on my lower body.
The consultant first thought going by the appearance of my foot that it was Capillaritis which I could not agree with as my body patches were totally different in appearance. Anyway, on the first ankle biopsy, that one came back negative but on the second calf biopsy, this one came back as positive t-cell clone and I was diagnosed at Stage 1B.
Soon after I had ten PUVA sessions which cleared all my body and foot patches/plaques that left me with a deep tan so no more further treatment was necessary.
Now I had been eight years clear of patches,in remission but this January I had a bad fall in a poorly lit shopping precinct, breaking my wrist, injuring my temple and both feet were severely sprained that I was kept in overnight at A&E. I was immobile for two weeks with deep bruising to forehead and to both feet but I noticed around this time I had some small reddish areas crop up on my left foot which I recognized as the beginning of patches and one larger one in the middle lower back.
It would seem a trauma such as my accident caused me to come out of remission, triggering the CTCL to start over again so I've another appointment arranged at the London hospital next week.
While I am waiting I have given my foot a short burst, three minutes of UVB light over several days but I can't really tell how this will work out.
I'm also starting a herbal course of Oleander OPC, if you search you will find the site of dr. Marc Swanpoel - his site gives testimonials and plenty info on his cancer protocol, some of the feedback looks promising.
I'm not sure if CTCL is so rare because it can be misdiagnosed and to make my point my cousin's partner developed CTCL in the 1980's, she had the treatments, PUVA, creams, chemo to name a few, she was at stage 2 to start with and she managed CTCL for over 30 years tackling tumors but in 2010 her condition escalated to Stage 4 where tumors were much deeper affecting her legs and she was told there was nothing more they could do for her so she was put on a pain drip until she passed away.
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Edited by - jupiter on 04/05/2014 15:40:15 |
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Nanoagain
35 Posts |
Posted - 04/06/2014 : 07:14:53
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Jupiter, welcome and thank you for your thorough history.
I believe that what you are relating demonstrates the error in how cancer is perceived by the medical profession. It is overwhelmingly seen as a local phenomenon and treated as such instead of the global problem that it is.
for example, your cancer was treated and "went into remission" and then treatment stopped (I assume). But clearly it never went away and was only kept at bay by your body''s immune system until your trauma when your body's defenses were strained to the breaking point by having to fight on too many fronts.
The thing to ask is what vitamins/minerals are being used up in body repair since that seems to be what triggered the cancer's ability to gain dominance again. vitamin C comes to mind and also the trace minerals.
Regarding my own NMSC treatment, I use local treatment of lesions with topicals, but am also looking for the nutrient deficiency that made the cancer possible. For fifty years I did not have frank cancer and something changed in my body allowing it to develop. Just treating the lesion will not keep more from coming back if I don't find the "poisoned well" that is causing it.
Anyway, hopefully this is not a recurrence for you! Welcome again
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jupiter
2 Posts |
Posted - 04/06/2014 : 14:18:45
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hi Nanoagain, thanks for the welcome - yes certain nutrients be it vitamins, minerals or enzymes that can be deficient will leave our immune defense open to become more vulnerable to cancers as these nutritional elements cannot be set at the most favorable level for the whole of our life as traumas, sickness will disrupt the balance making one more susceptible by weakening our immune system.
I suppose one way, although costly would be to have a nutritional [vitamin/mineral] analysis to find out where the deficit is by way of vitamin and/or mineral of which there may be more than one of these.
Then there is all the toxic and polluting substances we encounter globally in our daily lives and now with GM incorporated into mainstream foods, some of which can be avoided but not so easy is when it is in the air, when it is from pesticides, from viruses, from water, in the materials we use etc. and the list goes on.
May I ask what stage you are at and what local topical treatment you use for the lesions?
If you prefer to message me direct, let me know if you have my email address.
Thanks again for sharing your experience and viewpoint.
Diana |
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Nanoagain
35 Posts |
Posted - 04/07/2014 : 14:16:00
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Hi Diana, I've never had a doctor mention staging so don't know if they apply it to bcc.
Topically I use several things. On my overall face It's aloe Vera or raw milk whey or iodine mixed with coconut oil. On my two trouble spots (not lesions at this point), I use iodine or a combo of vit a, vit e, selenium, zinc and copper or a combo of vit c, vit e and green tea extract.
Internally, I take selenium, copper, zinc, magnesium, iodine, vit a, vit c, vit e, vit d and multivitamins. Also lemon balm, oregano, garlic--anything that has an antiviral effect.
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CTCL - background and present situation!
