Here we go then...

Mart1n0

Today was my tenth day on the rad rack after a dose of chemo on day one and so far no nasties except taste all but gone. Unti now I have avoided forums as felt I would take each stage on this journey as they come but fear has gotten the better of me so hope I can find a few on line soul mates to share this ordeal.....Luv M

Barbaraek

You are indeed in the right place...

and you will find support aplenty here. One chemo down is good! My husband was sick as a dog after his Cisplatin, so if you made it through #1 that's great. The rads get more difficult as you go along, but you will manage it. Drink, drink, drink, swallow, swallow, swallow. If your neck gets burned Aquaphor is good, and for really bad, weepy areas - Silvadene cream was a lifesaver for us. If mouth sores and mucositis become issues (and I'm sorry to say they probably will) type that in the search bar for the forum and you will see many messages that deal with them.

Hang in there - we are pulling for you! It is worth the struggle.

Barbara

MarineE5

Buckle Up

 

Mart1, 

As Phrannie says, Welcome to the club no one wants to join. As Barb said, you will receive a lot of support and answers to your questions. We lend a listening ear when you want to Vent. Someone here more than likely traveled the path you are on, so they will be able to help. 

My Best to You and Everyone Here

tomb247

Here we go

Welcome. Not the place I wanted to be either but a lot of great people and good information. You will get throught this and this site will help. I am just a year out of treatments and doing pretty well. You can see my profile for specifics.

Feel free to contact me at any time.

Prayers,

Tom

CivilMatt

welcome

Mart1n0,

Welcome to the H&N forum, sorry you are here, but going it alone is not much fun.  You still have to take each stage as it comes, but we can often share what worked for us.

Barbara already mentioned the importance of drinking and swallowing and often. Also, she mentioned the Silver Sulfadiazine cream for neck burn, not everyone needs it but I went through a lot of it. 

Another item you might find useful is Magic Mouthwash, used for throat, mouth, and tongue discomfort.  I love the stuff and swished and swallowed six bottles of it, every drop.

I take it you already have your music and you have the procedure down pat, I guess you’re ready for about 20 more rads.

Good luck,

Matt

wmc

Welcome to H&N group

Welcome, and as you can see you are not alone. This is not something you want to be alown in. You have been given the standard advice, drink lots of water, and be honest above all. If you have questions for your doctor write then down and leave room for answers. Just hand it to your doctor and this way you won't go blank when he answers one. Seeing how Head & Neck does cover so many areas you might let us know what and where yours is. Mine was Larynx just above the vocal cords. Surgery only for me and had a neck dissection on both sides and removed 86 lymph glands. 

Just take one day at a time and you will get through this. When you are done with the radiation, remember you are what is refered to as "Still Cooking" for the next month or two. Recovery is in weeks and months, not days. We are open 24/7 so it's a great place to ask questions or just come and write how you are feeling. Sometimes we all vent. We have members that all got through it and some are 20 years survivors, and many four, five and six. Myself I'm 29 months and all clear. You will get through this.

Bill

SQLNOLE

Mart1n
I don't know squat about any of this stuff, as I am a noob, but I on the same track with you guys. My train has just barely left the station.

I meet with the radiation oncologists on Wednesday to hear their spiel, but I have already decided to go with the TORS surgery, which I will schedule on Thursday morning. The surgeon said it will take 2 to 3 weeks to get on the robot's schedule. I FEEL LIKE GEORGE JETSON!

You have definitely come to the right place!

Mart1n0

london calling

Well I am blown away by so many responses with such positive tones and advice so huge thx to all.

I didn't mention I live in St Albans England just north of London and our health service is very different here compared to the US.

its the government funded National Health Service or  the NHS as everyone knows it, has pros and cons, biggest pro is its free biggest con is its nothing like as advanced or flexible as some if the hospitals in the US.

I was diagnosed December with SCC via a biopsy of a swollen neck lymph, ENT immediately removed my tonsils but transpires they were not the source, MRI revealed this as a tiny tumour of the right pyriform fossa with two other lymphs touched also.

When the oncologist detailed the treatment side effects especially the long term kind I left his office looking for the nearest cliff!

Fortunately or unso not many cliffs around here so I didn't jump but did look at alternatives of which US sites discussed many, ultimately tho I came to my senses and realised chemo rad was the only sure answer.

bizzarely a routine check up revealed I also have a prostate issue but un related to the SCC find out the treatment for that in a week or so but it appears a walk in the park by comparison.

So had the first round of Cisplatin with no hiccups at all 10 days ago second dose on day 25 then finish the 30 rads or racks as I call them

As of today I still feel absolutely fine, dodgy taste buds and slightly sore throat aside, neck is fine as using Aveeno moisturiser four times and rinsing with telladont frequently, peeing for England with all the water I'm guzzling!

havent seen many comments on here about diet which I radically changed post C day, all raw veges and juices, essaic tea, cottage cheese and flax seed, lost 10 lbs but that and upping my yoga routine to an hour plus daily did I hope get me in the best shape.

My Onc says it will make absolutely no difference at all as what will be will be, have to say life without taste and worst no saliva sounds horrendous so tell me oh experienced ones how do you deal with that?

once again my sincere thx for all the earlier posts, I might respond at a later time given I'm five hours ahead of EST

 

luv M

 

 

Mart1n0

SQLNOLE said:

Mart1n
I don't know squat about any of this stuff, as I am a noob, but I on the same track with you guys. My train has just barely left the station.

I meet with the radiation oncologists on Wednesday to hear their spiel, but I have already decided to go with the TORS surgery, which I will schedule on Thursday morning. The surgeon said it will take 2 to 3 weeks to get on the robot's schedule. I FEEL LIKE GEORGE JETSON!

You have definitely come to the right place!

Will you still need rads post

Will you still need rads post op Sqonole?

Mart1n0

Barbaraek said:

You are indeed in the right place...

and you will find support aplenty here. One chemo down is good! My husband was sick as a dog after his Cisplatin, so if you made it through #1 that's great. The rads get more difficult as you go along, but you will manage it. Drink, drink, drink, swallow, swallow, swallow. If your neck gets burned Aquaphor is good, and for really bad, weepy areas - Silvadene cream was a lifesaver for us. If mouth sores and mucositis become issues (and I'm sorry to say they probably will) type that in the search bar for the forum and you will see many messages that deal with them.

Hang in there - we are pulling for you! It is worth the struggle.

Barbara

Thank you very much for your

Thank you very much for your reply Barbara

 

x

Mart1n0

MarineE5 said:

Buckle Up

 

Mart1, 

As Phrannie says, Welcome to the club no one wants to join. As Barb said, you will receive a lot of support and answers to your questions. We lend a listening ear when you want to Vent. Someone here more than likely traveled the path you are on, so they will be able to help. 

My Best to You and Everyone Here

Cheers mr marine!

Cheers mr marine!

Mart1n0

CivilMatt said:

welcome

Mart1n0,

Welcome to the H&N forum, sorry you are here, but going it alone is not much fun.  You still have to take each stage as it comes, but we can often share what worked for us.

Barbara already mentioned the importance of drinking and swallowing and often. Also, she mentioned the Silver Sulfadiazine cream for neck burn, not everyone needs it but I went through a lot of it. 

Another item you might find useful is Magic Mouthwash, used for throat, mouth, and tongue discomfort.  I love the stuff and swished and swallowed six bottles of it, every drop.

I take it you already have your music and you have the procedure down pat, I guess you’re ready for about 20 more rads.

Good luck,

Matt

Thx Matt
 
M

Thx Matt

 

M

Mart1n0

wmc said:

Welcome to H&N group

Welcome, and as you can see you are not alone. This is not something you want to be alown in. You have been given the standard advice, drink lots of water, and be honest above all. If you have questions for your doctor write then down and leave room for answers. Just hand it to your doctor and this way you won't go blank when he answers one. Seeing how Head & Neck does cover so many areas you might let us know what and where yours is. Mine was Larynx just above the vocal cords. Surgery only for me and had a neck dissection on both sides and removed 86 lymph glands. 

Just take one day at a time and you will get through this. When you are done with the radiation, remember you are what is refered to as "Still Cooking" for the next month or two. Recovery is in weeks and months, not days. We are open 24/7 so it's a great place to ask questions or just come and write how you are feeling. Sometimes we all vent. We have members that all got through it and some are 20 years survivors, and many four, five and six. Myself I'm 29 months and all clear. You will get through this.

Bill

Thx Bill you have been thru

Thx Bill you have been thru the mill big time so encouraging that you still have the good grace to contribute here

 

luv

 

m

phrannie51

Hello Martin....

and welcome to this club....sorry you have to be here...BUT, here is where you'll find many very smart, very kind....and incredibly supportive people to hold your hand (if you don't mind) while you go through this treatment. 

The main side effects that everybody seems to get are that tastebuds go to hell, and saliva goes with it.  Those are temporary, but can last for a few months after treatment is over....coming back little by little until you realize you aren't carrying a water bottle with you every minute of every day.  I'm 3 1/2 years out of my first treatment, and I still have water handy when I eat....but I don't carry it every where I go.  I'm still getting tastebuds back, even this late in the game.  I could eat pretty much anything by a year out, but sweets evaded me...until the last couple months.  I ate my first orange in 3 years....did it ever taste good!

Being scared is a part of this cancer stuff....there isn't a single person on here who wasn't scared when they got here.  But you will see, there is a lot of knowledge here for getting through the tough times....plus a whole lot of humor.  They don't say laughter is the best medicine for nothing....it is a fact.

Treatment will be over quicker than it feels now.....one of our members calls this part Groundhog Days....same thing, over and over and over.  That's a good name for it. 

Just remember to eat as much as you can....or drink it if you have to (Boost VHC is good, as you can get 500 calories down in 12 swallows)....and drink lots and lots of water....it's ok if you're already peeing for England, you can pee for a few states here .  Water flushes the chemo out of your kidneys, keeps your swallower from freezing up, and keeps you hydrated....dehydration during treatment is common, and it is a horrible feeling....you don't even know you're thirsty...all you know is you're weak and sick.

Anyway, we're always here...somebody is.  This is a very active forum.

p

SQLNOLE

Mart1n0 said:

Will you still need rads post

Will you still need rads post op Sqonole?

Rads
I believe so, but it depends on what the pathology shows...

Mart1n0

phrannie51 said:

Hello Martin....

and welcome to this club....sorry you have to be here...BUT, here is where you'll find many very smart, very kind....and incredibly supportive people to hold your hand (if you don't mind) while you go through this treatment. 

The main side effects that everybody seems to get are that tastebuds go to hell, and saliva goes with it.  Those are temporary, but can last for a few months after treatment is over....coming back little by little until you realize you aren't carrying a water bottle with you every minute of every day.  I'm 3 1/2 years out of my first treatment, and I still have water handy when I eat....but I don't carry it every where I go.  I'm still getting tastebuds back, even this late in the game.  I could eat pretty much anything by a year out, but sweets evaded me...until the last couple months.  I ate my first orange in 3 years....did it ever taste good!

Being scared is a part of this cancer stuff....there isn't a single person on here who wasn't scared when they got here.  But you will see, there is a lot of knowledge here for getting through the tough times....plus a whole lot of humor.  They don't say laughter is the best medicine for nothing....it is a fact.

Treatment will be over quicker than it feels now.....one of our members calls this part Groundhog Days....same thing, over and over and over.  That's a good name for it. 

Just remember to eat as much as you can....or drink it if you have to (Boost VHC is good, as you can get 500 calories down in 12 swallows)....and drink lots and lots of water....it's ok if you're already peeing for England, you can pee for a few states here .  Water flushes the chemo out of your kidneys, keeps your swallower from freezing up, and keeps you hydrated....dehydration during treatment is common, and it is a horrible feeling....you don't even know you're thirsty...all you know is you're weak and sick.

Anyway, we're always here...somebody is.  This is a very active forum.

p

Many thank yous for this

Many thank yous for this Phrannie , three years + and still on the mend blimey! 

Luv M

Mart1n0

SQLNOLE said:

Rads
I believe so, but it depends on what the pathology shows...

Confused.com

whats most confusing to me is the variety of treatments and outcomes for what appear to be very similar conditions.

Have a look at this link  http://www.briantracy.com/blog/tag/throat-cancer/

Brian had virtually the same diagnosis as me but a different treatment and he seems to have recovered all his faculties very quickly, which is not what I'm being told sob sob!

 

Hondo

Welcome Luv

We are all the same when first trying to deal with this problem but the good part is you are dealing with many others who have been right where you are now. I am glad to hear you have 10 down and counting, so for now be strong and keep your focus. In a few more weeks it will all be over.

 

Tim

SQLNOLE

Mart1n0 said:

Confused.com

whats most confusing to me is the variety of treatments and outcomes for what appear to be very similar conditions.

Have a look at this link  http://www.briantracy.com/blog/tag/throat-cancer/

Brian had virtually the same diagnosis as me but a different treatment and he seems to have recovered all his faculties very quickly, which is not what I'm being told sob sob!

 

Protocol

Well, the doctor said the protocol for stage IVa is radiation and chemo, but I am opting for surgery first....

DarcyS

Piriform sinus cancer survivor

You've come to  an excellent site with many helpful, caring and knowledgeable people.  I found it when my husband was in treatment for ssc in his pirirform sinus and lymphnodes.  He is now 3 1/2 years post treatment and doing well.  He had 6 weeks of chemo followed by concurrent chemo and 50 radiation sessions.  His taste and salvia returned about 2 months after treatment.  Swallowing function can be affected especially where your radiation is directed so be sure to swallow and do the exercises your dr. gives you.  

We eat a very healthy mostly vegetarian diet.  After the 3rd week of rads, my husband couldn't swallow foods and for the next 2 months or so his diet was liquid.  Now he is back to eating healthy again and is able to eat anything he wants.   I do think your diet makes a difference in your health and your body's ability to heal. My husband also continued running up until the 4th week of rads.  His drs feel his healthy lifestyle helped him  through treatment and recovery.   He started running  and swimming again and doing yoga  2 months after treatment ended.  

Glad to hear your treatment is going well.  This is a scary time, but all here understand and can offer loads of help and hope.

phrannie51

Mart1n0 said:

Confused.com

whats most confusing to me is the variety of treatments and outcomes for what appear to be very similar conditions.

Have a look at this link  http://www.briantracy.com/blog/tag/throat-cancer/

Brian had virtually the same diagnosis as me but a different treatment and he seems to have recovered all his faculties very quickly, which is not what I'm being told sob sob!

 

No need to be confused...

...and you don't have to take everything you're being told to heart.  Thing is, everybody is different...each individual body reacts different....We say we had "chemo and rads"....but tho the chemo is pretty much the same, the rads are not...they hit the cancer plus individual lymph nodes that are affected.  I had Nasopharengeal cancer (behind the nose)....plus bilateral lymph nodes.  I was shot behind my nose, and both sides of my neck.  I never got a sore throat, I never had to use my feeding tube once during radiation.  Everybody else on here that I started treatment with were suffering bad bad sore throats and massive amount of mucous.  I never had any mucous, either.  Maybe my rads were missing my actual throat, there's no way to tell how you're going to do until you're in the middle of it....tho, it made me nervous that I was getting off easy .  Kent had NPC, too.... and had to use a tube....we were just different. 

Don't plan on all the side effects getting you....lack of taste, and saliva....those are the two every one seems to get....anything else is up for grabs.  Your Dr. tells you all the "possibilities" not the actual realities.  Your journey will be individual....thing is....having these folks here, any of things that DO come up.....someone here has managed to get through it, and can offer tips and tricks to help.

p