Hello, I'm a newbie...with SCC, 12 wks. post treatment

RushFan

I just stumbled upon this great resource. I'm just getting my feet wet looking at the posts and responses and I can tell there are a lot of great people and subjects that I want to know more about or comment on.

I'm a 48 year old male diagnosed with Squamous Cell Carcinoma in January of 2010. I had a suspicious lymph node removed and Mayo Clinic confirmed the diagnosis. (a local pathologist was stumped) I then went to M.D. Anderson Cancer Center where the diagnosis was confirmed.

A primary source was not found. The node had extra-capcillary extentions. I was treated with chemo (Cisplatin)once a week for seven weeks. I had 33 radiation treatments...Monday through Friday...with all sides of my neck treated. (11 blasts each day).

I did really well, at least I think so. I know others have had it a lot tougher than I did. I did not have a feeding tube...I worked very hard at not getting one. I drank ensure and boost around the clock and still lost 30 pounds. Fortunately I had a lot of muscle mass from years of working out to draw on.

I'm now 12 weeks post treatment. My first CT Scan did not find cancer. My next scan is in September. I've been back at work almost full time. I'm almost completely off the ensure etc. Though finding food to eat is a chore. Salivary glands took a big hit.

Sorry to ramble on, but as most of you know...it feels good to do so sometimes.
All the best to all of you.
Chuck.

Skiffin16

Congrats
Glad you made it through....

It does take awhile to get back in the groove and everyone is different and has their own schedule of healing.

It's a long slow process so don't get discouraged. I'm fourteen months post treatment and have regained nearly 75 - 80% of both my taste and salivary function.

I had SCC STG III HPV+ Right Tonsil, with a l'node involved. Nine weeks of Chemo (Cisplatin, Taxotere, and 5FU), then seven weeks of Carboplatin and 35 daily rads with Amifostine Injections. No PEG either....

Best,
John

RushFan

Skiffin16 said:

Congrats
Glad you made it through....

It does take awhile to get back in the groove and everyone is different and has their own schedule of healing.

It's a long slow process so don't get discouraged. I'm fourteen months post treatment and have regained nearly 75 - 80% of both my taste and salivary function.

I had SCC STG III HPV+ Right Tonsil, with a l'node involved. Nine weeks of Chemo (Cisplatin, Taxotere, and 5FU), then seven weeks of Carboplatin and 35 daily rads with Amifostine Injections. No PEG either....

Best,
John

Thanks
Thanks for the encouragement. I've got a consult this Friday for Lymphedema, minor...under my chin. I've got that "full" feeling right now. I'm also curious about Acupuncture for salivary glands and may post a new thread on that one later.

I am HPV+ as well. Supposedly a big plus.

Greg53

RushFan said:

Thanks
Thanks for the encouragement. I've got a consult this Friday for Lymphedema, minor...under my chin. I've got that "full" feeling right now. I'm also curious about Acupuncture for salivary glands and may post a new thread on that one later.

I am HPV+ as well. Supposedly a big plus.

Welcome
Welcome to our little club. Sorry you have to be here, but sounds like you have a great attitude and that makes everything easier.

SCC right tonsil here with mets to 11 lymph nodes, HPV+. Rad neck dissection with tonsillectomy and 7 weeks rad with concurrent treatments of Cisplatin. 16 weeks post treatment and like you I feel lucky. I've had the typical side effects but nothing I couldn't handle. That's awesome you made it thru without the peg. I'm still using peg 25% of time and eating is my number one priority, but still tough at times.

Welcome to the site and keep posting.

Positive thoughts going to you and everyone out there!
Greg

sportsman

Hello Rush Fan
I was diagnosed at fifty eight and about six months old. I to was in excellent physical condition, not bragging but in better shape than most thirty something year olds I saw in the gym. I had a neck dissection with lymph node removal followed by thirty five radiation treatments and chemo once a week. I lost a total of fifty pounds and most all of my muscle mass. I did reluctantly have a feeding tube put in after two weeks radiation and lived on it for about five months. My saliva glands were burned up as well as my thyroid gland. My neck on the side of the dissection as well as where most of the radiation was concentrated on is hard as a tree trunk. I also have the "turkey neck" effect and suffer from lymphedema. I am now three and one half years post treatment and have only gained about twenty eight of my lost fifty pounds back. I probably could gain more however it would take more food intake to maintain a higher weight and eating is now a burden rather than a pleasure. Life is hard now for me as I can't attend social functions where food is served and have not eaten in any type of restaurant in over three and a half years. I certainly hope and pray that as many others on here have get progressively better. I have been told by my doctors there is not anything else they can do for me but I never give up hope.

rush1958

Welcome
Welcome.

This web site has been a great resource of information. It has also been an inspiration for me. I hope it is for you as well.

Best of luck through your journey.

Rush

kimmygarland

rush1958 said:

Welcome
Welcome.

This web site has been a great resource of information. It has also been an inspiration for me. I hope it is for you as well.

Best of luck through your journey.

Rush

Welcome - I'm Kind of New Too
I've been reading for a long time, but only recently started actively posting. Sounds like you are doing ok. My husband is 8 months out of chemo/35 rads, and they think he has reoccurrence. Going through MRI and biopsy phase now.

Good luck to you!

Pam M

welcome
Chuck,
If you've been reading posts, you already know what a great help the people here can be. Luckily, I found this site near the beginning of my treatment journey.
Just seeing your "Rushfan" nickname made me smile - Rush was one of the bands I listened to during radiation treatments - no negative mental links - still love to hear Geddy Lee's voice. Do well.

Joel4

Pam M said:

welcome
Chuck,
If you've been reading posts, you already know what a great help the people here can be. Luckily, I found this site near the beginning of my treatment journey.
Just seeing your "Rushfan" nickname made me smile - Rush was one of the bands I listened to during radiation treatments - no negative mental links - still love to hear Geddy Lee's voice. Do well.

Welcome Chuck
Welcome Chuck, I am a big Rush fan too, Moving Pictures and Permanent Waves are my favorites. I even have my 11 year old son loving them. I was diagnosed in April with SCC Unknown Primary, left neck dissection in April found one lymph node with no extracapsular spread, HPV positive. T0N1M0, no rads or chemo awaiting 3 month post surgery PET/CT scans results tomorrow.
Wishing you the best and welcome!

micktissue

Hi Chuck
We have the same Dx and Rx exactly. I'm 17.5 weeks post but have a tube and still can't swallow. My throat is clogged with mucus and is constricted. I am feeling great though and am happy to be here. Endoscopy an the 16th to try and get me swallowing.

Welcome to the club. You getting a tattoo?

Best,

Mick

Skiffin16

RushFan said:

Thanks
Thanks for the encouragement. I've got a consult this Friday for Lymphedema, minor...under my chin. I've got that "full" feeling right now. I'm also curious about Acupuncture for salivary glands and may post a new thread on that one later.

I am HPV+ as well. Supposedly a big plus.

Lymphedema ~ AKA...Turkey Neck Club
Welcome to the Turkey Neck Club Brother....

Something most of us have/had or will have. Mine is nearly gone, it's something that seems to pop up around 2 - 3 months post radiation, lasting the better part of a year it seems.

More than likely you'll get the L'hermitte Sympton also...a kind of shocking, numb feeling that goes down your spine, legs an fingers when you bend your head forward, another gift of the rads that last around a year or so.

Best,
John

Skiffin16

kimmygarland said:

Welcome - I'm Kind of New Too
I've been reading for a long time, but only recently started actively posting. Sounds like you are doing ok. My husband is 8 months out of chemo/35 rads, and they think he has reoccurrence. Going through MRI and biopsy phase now.

Good luck to you!

Welcome To You
Welcome Kimmy....sorry to hear about your husband, why do they feel he has a recurrence?

Best,
John

Irishgypsie

micktissue said:

Hi Chuck
We have the same Dx and Rx exactly. I'm 17.5 weeks post but have a tube and still can't swallow. My throat is clogged with mucus and is constricted. I am feeling great though and am happy to be here. Endoscopy an the 16th to try and get me swallowing.

Welcome to the club. You getting a tattoo?

Best,

Mick

Good Name!
Hi Chuck, My name is Charles also. I prefer Charles and Charlie over Chuck! I am 39 and am 1 month post treatment. I had Right Tonsil SCC with 1 postive Right lymphnode. T2N2M0. 33 radiation with 3 boluses of Cisplatin every 3 weeks. Also HPV 16+ which I hope is good but we will have to wait and see if the research is right!!!!

I like you lifted weights and lost alot of muscle mass. I was 190 down to about 165lbs. I had feeding tube. I am taking things by mouth now but very little and it is a choir indeed. Right now I am trying Breakfast and dinner via 3 cans of jevity via Peg. Then Lunch and evening snack 2 can of ensure plus and a yogurt 170 calories by mouth. All meds by mouth. I can taste the peach and blueberry yogurt so I hope it is a good sign. Anyway I could go on; but sorry that you had to join us but glad you found us and welcome!!!

Charles

Skiffin16

Irishgypsie said:

Good Name!
Hi Chuck, My name is Charles also. I prefer Charles and Charlie over Chuck! I am 39 and am 1 month post treatment. I had Right Tonsil SCC with 1 postive Right lymphnode. T2N2M0. 33 radiation with 3 boluses of Cisplatin every 3 weeks. Also HPV 16+ which I hope is good but we will have to wait and see if the research is right!!!!

I like you lifted weights and lost alot of muscle mass. I was 190 down to about 165lbs. I had feeding tube. I am taking things by mouth now but very little and it is a choir indeed. Right now I am trying Breakfast and dinner via 3 cans of jevity via Peg. Then Lunch and evening snack 2 can of ensure plus and a yogurt 170 calories by mouth. All meds by mouth. I can taste the peach and blueberry yogurt so I hope it is a good sign. Anyway I could go on; but sorry that you had to join us but glad you found us and welcome!!!

Charles

Hang In There Charles & Chuck
Hopefully it'll get better for both of you in time.....

Best,
John

Bigfuzzydoug

Sweeeeeeeet!
Congrats on the clean CT!

I'm at the beginning of the journey. Just diagnosed with T2/N0/M0 SCC and about to undergo 7 weeks of radiation and low-dose Cisplatin chemo. Cause? Who knows? I might be HPV+ (they're testing now) or it could be reflux or it could be a toxic factor from the town I grew up in as a kid.

I'm actually quite big in muscle mass, but still have 30-40 in fat to lose so I'm hoping my body will tear into the fat and I won't lose to much muscle during the rad process. We'll see.

Welcome to the Head & Neck club! Sucks to join, but at least we all have each other.

RushFan

Bigfuzzydoug said:

Sweeeeeeeet!
Congrats on the clean CT!

I'm at the beginning of the journey. Just diagnosed with T2/N0/M0 SCC and about to undergo 7 weeks of radiation and low-dose Cisplatin chemo. Cause? Who knows? I might be HPV+ (they're testing now) or it could be reflux or it could be a toxic factor from the town I grew up in as a kid.

I'm actually quite big in muscle mass, but still have 30-40 in fat to lose so I'm hoping my body will tear into the fat and I won't lose to much muscle during the rad process. We'll see.

Welcome to the Head & Neck club! Sucks to join, but at least we all have each other.

Thanks and best of luck...
Doug,
Sounds like you have a great attitude...that will be a huge factor in your success.

I had same treatments that you are about to have. Low dose Cisplatin and 33 rads. First two-three weeks of treatment were very easy. Then the radiation kicked in. I had difficulty sleeping...up about every two hours every night. This actually worked to my benifit as I drank and Ensure every time I was up. Wanted to avoid the tube. My nutritionist was all over me every week on the scale watching my weight loss.

Another thing I highly recommend is Zofran for nausea. Works like a charm. Ask for a prescription.

Best regards,
Chuck.

Skiffin16

RushFan said:

Thanks and best of luck...
Doug,
Sounds like you have a great attitude...that will be a huge factor in your success.

I had same treatments that you are about to have. Low dose Cisplatin and 33 rads. First two-three weeks of treatment were very easy. Then the radiation kicked in. I had difficulty sleeping...up about every two hours every night. This actually worked to my benifit as I drank and Ensure every time I was up. Wanted to avoid the tube. My nutritionist was all over me every week on the scale watching my weight loss.

Another thing I highly recommend is Zofran for nausea. Works like a charm. Ask for a prescription.

Best regards,
Chuck.

Carboplatin
Carboplatin was my low dose Cisplatin...and Zofran did work pretty good for occasional nausea. During the big cycles of Chemo (Cisplatin, Taxotere & 5FU) I had Emend for three days, that stuff is great...never sick at all.

You might be able to get the Zofran from the Chemo Center as well....when I was in there they always had samples of something that was given. I tried a few things and some worked pretty well, Zofran was one of the samples.

Best,
John

GRAVEY

RushFan said:

Thanks
Thanks for the encouragement. I've got a consult this Friday for Lymphedema, minor...under my chin. I've got that "full" feeling right now. I'm also curious about Acupuncture for salivary glands and may post a new thread on that one later.

I am HPV+ as well. Supposedly a big plus.

I have learned that a good
I have learned that a good electric vibrating neck massager really helps work out the neck area. Gets that lymph fluid moving.


GRAVEY