New member

Same Diagnosis
Hi Nemo,
Sorry to hear about your situation but never fear, you should be fine, though some bumpy patches ahead. I had almost an identical diagnosis as you in August last year but not HPV.

I had IMRT (Intensity Modulated Radiotherapy) and Erbitux (Target Therapy = Chemo really). Treatment went for 7 weeks. I understand this is the latest greatest regime. I had 2 very light readings on 2 nearby lymph nodes, hence the question about Chemo. Of my 3 Doctors : ENT, RO (Radiotherapy Oncologist) and Chemo Doctor (Chemo Ali). 2 of them said Rads would be sufficient, Chemo Ali said he thought I should get the Chemo. In the situation I was in, I went with the full monty. In hindsight, and if I were there again, I am still not 100% sure what I would do. The treatment will make you very sick. Some of us get hit really hard, while other waltz through with far less reaction. I was one of those who got hit hard. I was hospitalized for nearly the last 4 weeks of treatments, and then again after I was finished. If the Docs say you don't need the Chemo, then I would run with that. Chemo is not the 'total fix' it is sold as, and percentages quoted for outcomes, are based on 'relative statistics' (Like 20%) not absolute statistics (more like 0.2%), so the actual efficacy is probably much much lower than we commoners know.

After about the 2nd-3rd week of treatment, it gets quite painful and most of us had difficulty eating, so we all have lost weight, some more than others. It is common to get a PEG installed either before you start or about the 3rd week of treatment to supplement or totally get the nutrition into you. There are many posts covering the PEG here.

There are many good posts about preparing fro Rads, and what to expect or you can ask away and the gang here will rally with their advice and experiences.

My recent research has shown that diet can affect the outcomes considerably, and many say diet alone can have a better outcome than these rough treatments we get. The radiation appears to do the most damage to you and can leave some physical and medical conditions which all livable but still a bit of a nuisance. They are mainly: dry mouth (xerostomia) because we we had/have it, right where you salivary glands are, so they get fried. There is a drug called 'Amifostine' which can be given prior to your rads, and it is supposed to protect your Salivary glands (WRITE THAT DOWN &TAKE IT YOUR DOCS !).

You also may get loss of taste, some restriction in opening of the mouth, and some short term nerve damage which usually goes away. The less discussed and part that we have less understanding of the damage to healthy cells and in particular, things that affect your immune system. Chemo also has long term effects related to the same. Hence, I take the approach not just to hit the cancer, but to reduce the chances of recurrence.

We all have cancer cells and always will have. It's understanding what can trigger the progress to the state where we 'Have Cancer'.

I am about 8 months out now and feel absolutely great ! I am still about 25-30 lbs lighter than pre 'C' but am at my correct weight (BMI), and it feels good. I do still struggle with food but now, have gone pretty much vegetarian and follow a Raw Foods and Plant Based diet. This is something I highly recommend you look into. I also take a bunch of supplements to boost immunity, recovery and cover all the stuff I think I need to provide the body with all it needs. You can read that on my Expressions page if you are interested. You can PM me anytime for references etc.

All the best Nemo and keep in touch as you are supported here with far more information than your Doctor will have or give you so use this is the place to get your 'questions' ! Remember, carry a note pad and write each bit of information down. You will soon be more in cntrol.

Cheers
Scambuster