New member

Nemo

Hello, Everyone.
May I please join this club that none of us wants to belong to? I have been reading your stories for about a week and I am so impressed with the knowledge and compassion you all posess. I have learned so much from you already, but now I am ready to talk.

I am a 41 year old mother of two living boys, and one beautiful boy who died 10 months ago at the age of 8. I had an elective tonsillectomy on March 25 and was diagnosed with squamous cell carcinoma of the left tonsil on March 26. Needless to say, both my surgeon and I were shocked. I am Stage 1, N0, M0 and HPV positive. My margin from surgery was 0.4mm. I have not started treatment yet and I am still uncertain as to what I will do.

I will do radiation, but I don't know if they will irradiate both sides of my throat or just one. Chemotherapy seems to be the biggest question. After reading some of the messages here, I think I will do it. The doctors are saying I am young and healthy so I don't really need it and that radiation should do the trick. Seems like a gamble to me.

Thank you for reading this. I find it sobering to put in words the fact that I HAVE CANCER. It's all so surreal, like some game I have been playing for a few months.

My Best to All,
Nemo

Fire34

Radiation
Nemo
I had unknown primary but mine was just in the lymph nodes on the right side of my neck. With the unknown primary I had both sides radiated. I believe they went with the chemo & radiation. I went to U of Chicago and was part of a clinical study involving Erbitux.
I had 8 weeks of chemo with Erbitux. carboplatin & taxol, then 5 alternating weeks of 2x daily radiation with concurrent chemo of 5FU, Hydroxyurea & Erbitux.
I do not know whether radiation alone would have killed it or not, as I was not really given that choice.
My last dose was Nov. 30th 2009 and my first Pet came back negative. Best Wishes & Prayers on whatever decision you make.
Dave

stevenl

New
Hi Nemo,

Welcome to the site. I was diagnosed Jan.15th with scc stage 4 right tonsil. Had chemo and rads concurrently. I am now 5 weeks out of treatment. I am doing well and really did pretty good through treatment. I had 33 rads and 6 rounds of cisplatin with 5FU administered via fanny pack overnight. I would consider what the docs say seeing as how they seem to have caught it so early. Then again, I would want everything I could get to rid of the C. I would probably opt for chemo too.

Best,
Steve

sweetblood22

Nemo found us.
Hi there, Nemo. Sure you can join the club that no one wants to be in, I mean since you went thru so much trouble to fit in an' all. It is a shock, isn't it? I have to say, even in my case when I pretty much knew with 98% certainty that something bad was going to go down with me, I was still shocked.

I am 42, and I am not only a cancer survivor, but also a Fanconis Anemia patient. Good times! I am single now, never had children. I am so sorry to hear of your boy's passing. You have been through too much this year.

I found a swollen lymph node in my neck, and before you knew it, in two months the tumor was the size of a large lemon. It was MSCC HNC, with Unkown Primary, Stage 4. I had a modified radical neck dissection, teeth pulled, PEG placed, and then 30 rads. No chemo. I am out of treatment a year 2moro! Fanconi Anemia patients have serious hypersensitivity with radiation and chemo. I was told by those in the know, the top experts in FA that chemo would kill me. They wanted me to do Erbitux, but after much research, and prayer, I refused that too. I also went for 3 opinions because of my extremely unique situation.

Well, stage one and HPV positive sounds 'good'. It sounds like they caught it early, and the research that we have all read shows that HPV positive patients seem to do better. Whatever you decide to do, ask, ask, ask questions, and get as informed as you can. Which, since you are here, seems like you are doing. I wish I found this site before my rads. I came here seeking info and comfort and mental healing on the side effects I am left with. There really is a great bunch of people here.

Wishing you a warm welcome, and the very best,


'sweet'

Kent Cass

sweetblood22 said:

Nemo found us.
Hi there, Nemo. Sure you can join the club that no one wants to be in, I mean since you went thru so much trouble to fit in an' all. It is a shock, isn't it? I have to say, even in my case when I pretty much knew with 98% certainty that something bad was going to go down with me, I was still shocked.

I am 42, and I am not only a cancer survivor, but also a Fanconis Anemia patient. Good times! I am single now, never had children. I am so sorry to hear of your boy's passing. You have been through too much this year.

I found a swollen lymph node in my neck, and before you knew it, in two months the tumor was the size of a large lemon. It was MSCC HNC, with Unkown Primary, Stage 4. I had a modified radical neck dissection, teeth pulled, PEG placed, and then 30 rads. No chemo. I am out of treatment a year 2moro! Fanconi Anemia patients have serious hypersensitivity with radiation and chemo. I was told by those in the know, the top experts in FA that chemo would kill me. They wanted me to do Erbitux, but after much research, and prayer, I refused that too. I also went for 3 opinions because of my extremely unique situation.

Well, stage one and HPV positive sounds 'good'. It sounds like they caught it early, and the research that we have all read shows that HPV positive patients seem to do better. Whatever you decide to do, ask, ask, ask questions, and get as informed as you can. Which, since you are here, seems like you are doing. I wish I found this site before my rads. I came here seeking info and comfort and mental healing on the side effects I am left with. There really is a great bunch of people here.

Wishing you a warm welcome, and the very best,


'sweet'

Welcome, Nemo
And hope you will stay for awhile- until this Chapter in your life has found a successful ending.

I would only add to what sweet posted- that you should ask the Drs. if they are certain the C has not spread to areas that won't get zapped with the rads. Perhaps a percentage will be in order- such as there's a 90% likelihood it has not spread into the lymph system. Could be you're blessed with quite excellent timing, and caught it early enough. Do be aggressive with your questioning of the Drs. and their opinion(s) on the state/stage of C with you. If there's a significant chance it could have spread...that's when Chemo enters the picture. You have young people depending on you, Nemo, and that brings responsibility to make danged sure you get this done right for you, and them.

Yes, it is a shock, and reality does become somewhat surreal for awhile. That sense of the surreal will likely vanish when treatment starts, though; and, by then, it would be good to find an inner acceptance that the C is real, and you gotta do whatever it takes to win the battle ahead of you. You're early, Nemo, and young (I was 54), and will survive this.

Believe

kcass

Scambuster

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

Skiffin16

Welcome to the Club Nemo
My diagnosis and treatment was kind of similar to that of Fire and Steve.

Right tonsil, one lymphnode, STG III SCC HPV+....

Nine weeks (three week cycles) Cisplaten, Taxotere and 5FU (pump in the fanny pak). Then seven weekly doses of Carboplaten and 35 daily imrt rads (both sides of the throat) and daily injections of Amifostine.

Diagnosed 2 Jan 2009, completed treatment 18 Jun 2009. All clear on scans so far, hoping to stay that way....

A lot of people here that have gone through it and come out the other end.

Good Luck, God Bless,
John

Hondo

Hi Nemo
We love having you here us just sorry to hear it is because of cancer, you will find a lot of help and a lot of friends

debbiejeanne

Nemo, first let me say I'm
Nemo, first let me say I'm so very sorry for your loss. I cannot imagine going thru that and then finding out I have cancer. I'm so sorry. My sister lost her son (38) on March 7 and we are all having trouble coming to grips with that. The best thing I've found to help me thru each day is to stay busy.
I'm glad the cancer is only a stage one and things look good although I know it will still be a rough road. I'm glad you have 2 boys who will be there for you. As you said, you will find a lot of info here not to mention you will make a lot of friends. You will find that your friends here will really be here when you need to talk or have a question answereed and that they all TRULY CARE!! I could not have made it this far without this site and the wonderful people here.
I will put you and your family in my prayers and look forward to hearing more good news from you. Please keep us posted on how you are doing.
God Bless,
Debbie