Hi Lizzy, I had T1N2P1M0 and had only one tonsil removed by tors (robot) and a neck dissection to remove 24 lymph nodes. Only one node was affected. 5mm margin was negative. No rad or chemo as 3 DR's were happy with the margins. Cancer has returned to the other tonsil after 12 months. I would question the surgeon why not remove both tonsils.
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Dearest Steve... I also had no support during chemo and after. I've lost nearly all my friends. Not one has asked how I am and how I'm doing. Not only did my friends desert me my parents also did. Kicked me out of the apartment they had for me while going through chemo...they said I complained to much and shunned me even more for taking pain pills. I had become a junkie to them. Why can people not understand this horrible disease? I am 6 months out of chemo and still feel i haven't gotten a clear answer if is gone. every time i went to dr. It was everything looks great only to go into the hospital for SOB and be told there were three lymph nodes they were still looking at. My symptoms have started again. I feel abandoned from every corner. Dealing with cancer i thought would be the worst..no..now i have neuropathy and absolutley miserable. I'm scared and fed up that i may never get back to normal.
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deejjay I can understand having just gone thru cancer myself and talking to my doctor having this illness has really changed my life and he agreed that it does. I look at it are some so called friendship really worth it. You really need supportive people around although some people can start being supportive they change and I think that is the time we need to change as I have recently. See my comments above I seem to being going thru the same thing like you are.
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Hi Jules2, I'm new here & am 8wks post pelvic chemoradiotherapy treatment for T4 anal cancer. Am still doing small dressings on a few stubborn spots in my 'crevices' & applying pure sorbelline cream to the newly healed skin as this is all I've been 'prescribed' by the radiotherapy nurses. I am intrigued to know whether you used the Manuka honey throughout your entire treatment & recovery, & if you used anything else like MooGoo? Thanks. 🙂
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Ok, I think it is time this thread had a rest.
I am truly sorry for your loss @Keith 💕
We have a great booklet all about Complementary Therapies that is well worth a read for anyone affected by cancer, including carers, family members and friends. Complementary therapies are worth looking at and how they can work with your more conventional treatments such as chemo or radiation. Even something as simple as a light massage can do the world of good for some people.
Regarding the perennial question of whether gumbi gumbi is effective in treating cancer, I am going to refer you to the Cancer Council website - iheard which looks at all sorts of questions and things people have heard about cancer, and gives an informed answer about them. The site is well worth the visit.
With regards to gumbi gumbi, this is what the site says:
Gumbi gumbi (or gumby gumby) is otherwise known as the native Australian plant Pittosporum Phylliraeoides. Gumbi Gumbi is a medium to large tree, native to certain areas of Australia, and very sparsely found. Many people believe there are up to six varieties, with only one having medicinal properties used in Aboriginal herbal remedies and another being toxic. The major constituent of gumbi gumbi extract is saponin (a sulphonated di- or tri-terpene). Saponins are natural detergents found in plants. They’re highly toxic to cold blooded animals and some have been identified in snake venom, starfish and sea cucumber. Some are toxic to humans. Also present in gumbi gumbi extract are tannins, which have shown potential antiviral, antibacterial, long-term antioxidant and anti-parasitic properties. There are also alkaloids, naturally occurring chemical compounds containing basic nitrogen functionality that have pharmacological effects at low doses and are used in medications and recreational drugs. There is no credible independent scientific evidence that gumbi gumbi extract has any effect on cancer.
There's an entire section on our website about Complementary Therapies that is well worth the read, including this section regarding the use of herbs and plants. And I'd like to draw your attention to this section on making treatment decisions, which may be helpful when considering complementary therapies.
Some further resources we recommend you check out:
Understanding cancer books
Podcasts: The Thing About Cancer
Podcasts: The Thing About Advanced Cancer
Cancer Council Online Community Manager
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Hey Hey In my opinion, this is one for the scientists, and whoever offers a point of view on it does not definitively KNOW. Immunology is a major research area in cancer treatment, and is providing improved (and less damaging) treatment options for some types of cancer. Great. But that doesn't necessarily translate to immunity/metabolism preventing you from getting cancer in the first place. From what I read, there's some kind of programmed death gene in all of us, some kind of marker that tells the body to start shutting down. It's like that old saw about every cell in our body replacing itself over a 7 year period .. we're designed to rebuild and heal, but also eventually shut down. Cancer is a mutation of healthy cells, that (just from a bit of reading) apparently is triggered by this programmed death process - and a lot of the immunology drugs geared toward treating cancer are designed toward over-riding this process (so that your healthy immune system can identify and fight the cancer). Look, this is all just me as a layman interpreting science that is over my head .... BUT .... That leads to the logical extrapolation that a healthy immune system doesn't necessarily specifically fight cancer. The immunology meds are about MAKING THE CANCER VISIBLE to your immune system (and yeah I think also super charging the immune system). So basically, this programmed death process, this mutation into cancer cells, is triggered (in my case apparently by HPV+), and it's a signal from the head honcho that it's time to pull the switches and go on vacation. In my thinking, it leads that an otherwise healthy person with a supercharged immune system is just at risk of cancer as someone not (an oncologist said this to me, actually, when I was diagnosed). BUT - eating all that healthy stuff and being healthy still FEELS great. I just think anybody who asserts that they KNOW it will help you prevent cancer should be looked at suspiciously - likewise if they even assert it will help you FIGHT cancer (beyond how being and feeling healthier will help you). I think it's all about that programmed death process, that trigger point where a cell starts thinking "ohh right, Im not meant to be here any more". They kill those cells with radiation and hopefully they stay away. But will immuno- medicine, hawaiian seaweed and all that stuff help ? I guess the answer is probably a very definite maybe. Our medical establishment isn't great in terms of being a source of knowledge - I've met with scientists to discuss things like autism, and for extremely intelligent people with a very rigorous protocol, they're like everyone else - flawed humans who don't like hearing that they don't know everything, or hearing viewpoints alternative to the narrative they've invested so much into. So yeah - on the flipside, if the secret to preventing cancer is in some kind of SUPERIMMUNO stuff, the orthodox medical establishment probably will poo-poo it for as long as possible, until the evidence is just plain undeniable. I reckon gene therapy is probably what we'll see in 25 years - where at risk persons are identified at birth and given a preventative innoculation of sorts. As long as the zombie apocalypse doesn't happen in the interim.
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Lampwork54 You are so right in saying we can’t change what has happened,I find I no longer take things for granted,I enjoy life and all it’s uncertainty ,I like seeing my family take on new challenges and their growth along the way.Its great you are going back to Tai Chi and other outings you have to participate in life.Best wishes with your Radiation treatment.
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I was diagnosed with the same only with synchronous metastasis of the liver also last year in May, was wondering if there were any similar cases or of any other nasopharyngeal carcinoma cases at all.
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Hi how are you? I hope you are doing much better. I have the same cancer as you. It is rare I have had 2 operations and about to undergo a third. Just wanted to see how it went for you and did you do your surgery at Peter mac best wishes
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Hi Bryan, I am not having any side effects from the Braf meds, except the first day when I was totally tired. My oncologist started me on a lower dosage because a different oncologist previously gave me a very strong dosage which was way too strong for my body to handle. Current oncologist told me to contact the clinic any time if I experience any nasty side effects and they would adjust the dosages accordingly. This was great info - as the first oncologist didn't have any experience, the current oncologist does have a lot of experience with Braf dosages - to suit each patient. I hope you were given that option. The current dosage I have is half the dosage I was given originally, and is much better! The original dosage had me totally bedridden - and I only took it for two days! I will be hoping for a positive reading on a PET scan set for next week, but am ready to hit the natural materials if the Braf is not working. I will continue with the Braf as well, but give it a hand if required. My malanoma metastisised mainly to my brain, and I had a 3cm tumour removed in December, still have another six or seven there, another one or two in a lung, and a tiny one in my liver. I haven't suffered any pain at all and the only side effects are short term memory issues and, while on the Braf, some instanses of imbalance. They only last a few seconds. I think I need to travel along with the Braf meds and work up to Immunology. Thats the impression I get from the oncologist. I have experienced an SCC, and this was mentioned in the info for Braf meds. The GP diagnosed it. It came up really quickly, the size of a wart, no colour, but it really was itchy. His recomendation was to remove it surgically ASAP. It is now dead and gone. I do expect to have more SCC's appear - because I have had many BCC's over the past decade and must be prone to skin cancers - including that melanoma 😞 Life goes on and it's all great, and I only have to see the oncologist monthly at this time. I keep a positive attitude happening, and this may take some serious 'music' days where I play lots of my favourite music up really loud ( I live alone so I can), or planting vegies in my little garden, and doing anything I want to do. I cannot go back to work, ever, accoring to my prognosis, but I still catch up with my workmates. That helps too because it makes me feel that I am still a part of my old life.. When my diagnosis was given to me I couldn't even understand what they were saying. The big one in my head was affecting me very badly. It was quite sudden, and my whole life changed just as quickly. Now I can enjoy an early retirement and enjoy my family and friends, and I give thanks for every beautiful day. I have been through a rough few months not knowing what was in store for me, and seeing some really negative medics in my home town. That has changed now, I am seeing an oncologist that does know what they are doing, does listen to what I tell them, and I feel so encouraged by that. I take joy in seeing some of those overdue jobs being completed around my house - solar system, fence replacement, electrical work. I think it gives me a sense of accomplishment and makes me smile. That's all I aim for, a smile, happiness in what I can do with whatever time I am blessed to have. I have had an interstate friend, and an interstate relative both come to stay with me a couple of times. I know they are scared that I may not last long, and I know they are saying goodbye in their own way. This is OK with me, I understand they need to do this and I don't take offense or feel sad, that's just life and how it happens. I still feel fine, I look fine, and I still do everything for myself. As you said, this may change at any time and I won't feel so good. We do need to have somebody to talk to who will understand and offer encouragement, and I believe that friends and family may not fully understand how we think in this challenge/situation. I tried explaining exactly this to my daughter and although she means well she cannot fully grasp my feelings on my mortallity when I need to talk about it. I feel that it's not fair on them that they should listen to my thoughts. They want to enjoy my company, not to hear how I feel about it sometimes....I did consult a councellor with the Cancer Clinic and she was amazing help to me whenI was feeling down. I hope your consulation was a positive one, and my very best wishes that the meds are friendly to your body. Kerri Cheers, Kerri
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.