New here

miccmill

Hi,
I've been reading for about 3 weeks.

My significant other has been diagnosed with SCC, unknown primary (CT, PET and Panendoscopy). He had a radical neck on 4/26 with two nodes positive, no muscle, nerve or blood vessel involvement.
We're in Rochester NY at the Wilmont Cancer Center. I see a couple other newcomers from our City.

There is so much good information here about how to navigate ones way through this process. I have a lot more reading to do.
We have our first appointment with the Radiation Oncologist this week to develop the plan for radiation treatment which will begin the first week in June.

Has anyone continued to work through their radiation treatments?

Fire34

Not Here
Micc
I also underwent chemo prior to my radiation and I thought I would be able to work thru that but no way. I had too many complications. My radiation consisted of concurrent chemo/rad every other week for 5 weeks, radiation was 2x daily. Again I had so many side effects and complcations there was no way. As you have previously read that everyone is different. Your significant other is not having chemo with unknown primary? I was also unknown primary. FYI my chemo drugs were Erbitux, Taxol & Carboplatin. The conccurent chemo was 5FU & Hydroxyurea Best Wishes & Prayers
Dave

miccmill

Fire34 said:

Not Here
Micc
I also underwent chemo prior to my radiation and I thought I would be able to work thru that but no way. I had too many complications. My radiation consisted of concurrent chemo/rad every other week for 5 weeks, radiation was 2x daily. Again I had so many side effects and complcations there was no way. As you have previously read that everyone is different. Your significant other is not having chemo with unknown primary? I was also unknown primary. FYI my chemo drugs were Erbitux, Taxol & Carboplatin. The conccurent chemo was 5FU & Hydroxyurea Best Wishes & Prayers
Dave

Working during treatment
Dave,

Thanks for your reply.

Glenn is currently unemployed and will remain so till he's got some recovery from treatment.

We meet with Rad/Onc and Med/Onc on Wednesday. The Tumor Board met last week and did not recommend Chemo but the Med/Onc MD is going to make his case to us on Wed. Glenn will go for anything that's recommended. He just wants as much thrown at it as possible right away.

I work in a hospital within our University system so he may have his treatments here but don't know where the Rad/Onc MD wants it done yet.

I'm also hoping for PEG placement prior to everything starting but the surgeon told us they don't necessairly place a PEG until it appears to be needed. From everything I've read, I don't see how it isn't needed at some point for some amount of time.

MarineE5

miccmill said:

Working during treatment
Dave,

Thanks for your reply.

Glenn is currently unemployed and will remain so till he's got some recovery from treatment.

We meet with Rad/Onc and Med/Onc on Wednesday. The Tumor Board met last week and did not recommend Chemo but the Med/Onc MD is going to make his case to us on Wed. Glenn will go for anything that's recommended. He just wants as much thrown at it as possible right away.

I work in a hospital within our University system so he may have his treatments here but don't know where the Rad/Onc MD wants it done yet.

I'm also hoping for PEG placement prior to everything starting but the surgeon told us they don't necessairly place a PEG until it appears to be needed. From everything I've read, I don't see how it isn't needed at some point for some amount of time.

Peg Tube
Miccmill,

I would strongly suggest the Peg Tube ahead of time verses getting it later. Why go thru a procedure when you are already worn down from treatments. That is what was mentioned to me. I basically had no choice as I had 1/3 of my tongue removed and had a Trach at the time. I lived via the Peg Tube.

Once radiation started, the sores got pretty big and troublesome. Fatigue will become a issue and thinking about working was not on my mind, rest was. I needed to take naps after my radiation. I would come home and chop wood for roughly 10-15 minutes before I took that nap. But, I was doiing it to say to myself, that I was tired from the wood chopping, not the cancer treatments. It was a mental game to myself.

My Best to Both of You andEveryone Here

Joel4

MarineE5 said:

Peg Tube
Miccmill,

I would strongly suggest the Peg Tube ahead of time verses getting it later. Why go thru a procedure when you are already worn down from treatments. That is what was mentioned to me. I basically had no choice as I had 1/3 of my tongue removed and had a Trach at the time. I lived via the Peg Tube.

Once radiation started, the sores got pretty big and troublesome. Fatigue will become a issue and thinking about working was not on my mind, rest was. I needed to take naps after my radiation. I would come home and chop wood for roughly 10-15 minutes before I took that nap. But, I was doiing it to say to myself, that I was tired from the wood chopping, not the cancer treatments. It was a mental game to myself.

My Best to Both of You andEveryone Here

Rochester
Mccmill,

Our cases were before the tumor board on the same night....that's so weird!
I wish your significant other the best. I had my tonsillectomy and dissection just a few days before his and enjoyed a lovely 5 day stay at Strong. Myy throat feels good now and I'm going back to work tomorrow.
My primary was not found, the dissection found N1 with no extracapsulary spread. The original plan for me was radiation no chemo but now they think I may be clean so no radiation. They have me doing follow up exams.

I hope all goes well for you guys. If you need anything shoot me a PM.

miccmill

MarineE5 said:

Peg Tube
Miccmill,

I would strongly suggest the Peg Tube ahead of time verses getting it later. Why go thru a procedure when you are already worn down from treatments. That is what was mentioned to me. I basically had no choice as I had 1/3 of my tongue removed and had a Trach at the time. I lived via the Peg Tube.

Once radiation started, the sores got pretty big and troublesome. Fatigue will become a issue and thinking about working was not on my mind, rest was. I needed to take naps after my radiation. I would come home and chop wood for roughly 10-15 minutes before I took that nap. But, I was doiing it to say to myself, that I was tired from the wood chopping, not the cancer treatments. It was a mental game to myself.

My Best to Both of You andEveryone Here

Marine,
I agree with you
Marine,
I agree with you about the PEG. I think part of the reason they aren't excited about it is that Glenn weighs 290lbs. He can lose plenty of weight but you can also starve at a cellular level without proper nutritional support.

miccmill

Joel4 said:

Rochester
Mccmill,

Our cases were before the tumor board on the same night....that's so weird!
I wish your significant other the best. I had my tonsillectomy and dissection just a few days before his and enjoyed a lovely 5 day stay at Strong. Myy throat feels good now and I'm going back to work tomorrow.
My primary was not found, the dissection found N1 with no extracapsulary spread. The original plan for me was radiation no chemo but now they think I may be clean so no radiation. They have me doing follow up exams.

I hope all goes well for you guys. If you need anything shoot me a PM.

Rochester
Joel,

That's a wonderful outcome. I'm sure a tonsillectomy as an adult is not a pleasent experience.
Hope all stays well for you.

Lisa

sweetblood22

miccmill said:

Marine,
I agree with you
Marine,
I agree with you about the PEG. I think part of the reason they aren't excited about it is that Glenn weighs 290lbs. He can lose plenty of weight but you can also starve at a cellular level without proper nutritional support.

working
I was not able to work. I was going to try, but I was in pain from the neck dissection, and had to get my left arm back to working better. My job was extremely physical, and a minimum of 48 hours a week. I am still not working, since Jan. of 2009.

I decided my job was going to be getting back to health, and getting my body in fighting shape for radiation. I tried to gain some weight, because at first, i was not getting a peg tube. I juiced every day and took a vitamin suppliment and an immune booster. In the mean time I got two other opinions.

I felt my health was more important than trying to work. For way too long I put my jobs, and working way too many hours before my health. My doctors had been mad at me for years for doing it. I finally listened when the big "C" woke me up.

I would get a peg as Marine said, and I agree. I decided to be pro-active rather than reactive. Thank God I changed my mind, as I ended up losing 40lbs. I got down to 88lbs. I still have to use my peg daily, and have had it for 14 months.

I had SCC HNC unknown primary stage 4. Wishing only the best for you both.

Fire34

sweetblood22 said:

working
I was not able to work. I was going to try, but I was in pain from the neck dissection, and had to get my left arm back to working better. My job was extremely physical, and a minimum of 48 hours a week. I am still not working, since Jan. of 2009.

I decided my job was going to be getting back to health, and getting my body in fighting shape for radiation. I tried to gain some weight, because at first, i was not getting a peg tube. I juiced every day and took a vitamin suppliment and an immune booster. In the mean time I got two other opinions.

I felt my health was more important than trying to work. For way too long I put my jobs, and working way too many hours before my health. My doctors had been mad at me for years for doing it. I finally listened when the big "C" woke me up.

I would get a peg as Marine said, and I agree. I decided to be pro-active rather than reactive. Thank God I changed my mind, as I ended up losing 40lbs. I got down to 88lbs. I still have to use my peg daily, and have had it for 14 months.

I had SCC HNC unknown primary stage 4. Wishing only the best for you both.

University System
Micc
Funny you should mention that, I had my treatments at U of Chicago. I was eligible for a clinical trial with Erbitux. There were two arms in the trial one with daily radiation and the other with the twice daily radiation. Both parts had Erbitux with different types of chemo combined.
I was lucky my employer had some short term benefits that helped more than you can imagine, I am surprised that your husbands employer doesn't. Again
Best Wishes & Prayers
Dave

Hondo

Hi Micc

Welcome to CSN, Working during treatment depends on the person, we all respond different to the treatment because of the type of treatment and dosage. I was lucky and able to work through my treatment both times, but I also have a boss who supported me and understood what I was going through. You might do OK for the few weeks but as the affect of the treatment start to wear on your body don’t be afraid to say I need rest.

All the best to you.

sweetblood22

Hondo said:

Hi Micc

Welcome to CSN, Working during treatment depends on the person, we all respond different to the treatment because of the type of treatment and dosage. I was lucky and able to work through my treatment both times, but I also have a boss who supported me and understood what I was going through. You might do OK for the few weeks but as the affect of the treatment start to wear on your body don’t be afraid to say I need rest.

All the best to you.

employer
I did not mention that. Mine would not let me work less than 48 hours per week, so I could not work. I thank God had been paying for a disability policy thru work. It kicked in after my FMLA leave. I had no income, and lived off my savings for those three months that I had no income.

rozaroo

sweetblood22 said:

employer
I did not mention that. Mine would not let me work less than 48 hours per week, so I could not work. I thank God had been paying for a disability policy thru work. It kicked in after my FMLA leave. I had no income, and lived off my savings for those three months that I had no income.

Employer
We ae vey lucky with health insurance here in Canada! Plus my husbnds boss called when he found out I had cancer & told my hubby to take good care of me. I feel so badly for eveyone out there that did not have understanding employer's. I count my blessing' every day.

Greg53

rozaroo said:

Employer
We ae vey lucky with health insurance here in Canada! Plus my husbnds boss called when he found out I had cancer & told my hubby to take good care of me. I feel so badly for eveyone out there that did not have understanding employer's. I count my blessing' every day.

1st day back for me was today
Micc,
Today was my first day back at work for me and I'm 4 weeks post treatment. I worked thru week #4 of my rad treatments. I had 35 treatments or 7 weeks. It was awesome getting back to work! Missed the people and being able to keep busy. Only working half days though. Good luck.
Greg

delnative

rozaroo said:

Employer
We ae vey lucky with health insurance here in Canada! Plus my husbnds boss called when he found out I had cancer & told my hubby to take good care of me. I feel so badly for eveyone out there that did not have understanding employer's. I count my blessing' every day.

Hi, Miccmil
Thankfully, I didn't have to work during my treatment. My employer's disability insurance allowed me to take six months off at full pay.
Could I have worked through treatment? Physically, yes, but mentally, no way. I'm a reporter and need to be at the top of my mental game at least some of the time, and what with the rads, chemo and emotional turmoil I wouldn't have been of much use to my employer.

--Jim in Delaware

j3rey

about the same schedule
Hi Micc,
My husband was also diagnosed with SCC. Neck Dissection on April 28th. We are close to the same time schedule. One node positive/ no other involvement. Suspected primary on the lateral pharyngeal wall. This has shown up in two different scans plus MRI but is covered with healthy tissue and has not been positively biopsied despite much effort to do so. It is small. Med Onc. says no chemo needed and that we will proceed with radiation only. Have decided to go forward with IMRT 6 and 1/2 weeks 180 rads per day. All Rad. Onc. and med. onc. are in agreement with this treatment plan. Our cancer center is Moffitt affiliated, and we are really comfortable with our docs. Our radiation will also begin the first week of June. We are being advised to not go with a PEG. They seem to think that we will make it through without. Hubby is very strong and healthy otherwise. No other health issues or meds- trail bike rider nearly daily, etc. We have invested in a very high-end blender and I have done a lot of research on homemade liquid nutrition. We have experimented with 'green smoothies' that have pretty much a whole balanced meal (including a green organic salad!). We are trying to shoot for high calorie, high nutrition liquids he may be able to get down. Please keep posting and let us know what is decided by your hubby's med team. The people on this site are awesome, brave, and very supportive.

sweetblood22

j3rey said:

about the same schedule
Hi Micc,
My husband was also diagnosed with SCC. Neck Dissection on April 28th. We are close to the same time schedule. One node positive/ no other involvement. Suspected primary on the lateral pharyngeal wall. This has shown up in two different scans plus MRI but is covered with healthy tissue and has not been positively biopsied despite much effort to do so. It is small. Med Onc. says no chemo needed and that we will proceed with radiation only. Have decided to go forward with IMRT 6 and 1/2 weeks 180 rads per day. All Rad. Onc. and med. onc. are in agreement with this treatment plan. Our cancer center is Moffitt affiliated, and we are really comfortable with our docs. Our radiation will also begin the first week of June. We are being advised to not go with a PEG. They seem to think that we will make it through without. Hubby is very strong and healthy otherwise. No other health issues or meds- trail bike rider nearly daily, etc. We have invested in a very high-end blender and I have done a lot of research on homemade liquid nutrition. We have experimented with 'green smoothies' that have pretty much a whole balanced meal (including a green organic salad!). We are trying to shoot for high calorie, high nutrition liquids he may be able to get down. Please keep posting and let us know what is decided by your hubby's med team. The people on this site are awesome, brave, and very supportive.

j3rey
Glad that you have a treatment plan that you are comfortable with. I am also glad that you are comfortable with your team. I hope that he does well with out the PEG Tube. If he doesn't please don't hesitate to put one in.

CajunEagle

Greg53 said:

1st day back for me was today
Micc,
Today was my first day back at work for me and I'm 4 weeks post treatment. I worked thru week #4 of my rad treatments. I had 35 treatments or 7 weeks. It was awesome getting back to work! Missed the people and being able to keep busy. Only working half days though. Good luck.
Greg

Well.....
I'm one of those individuals you hear about.. After teaching and being a school administrator for 30 years, I get diagnosed with stage 4 left tonsilar cancer two months after I retire. Now, ain't that a hoot !!

Larry

miccmill

j3rey said:

about the same schedule
Hi Micc,
My husband was also diagnosed with SCC. Neck Dissection on April 28th. We are close to the same time schedule. One node positive/ no other involvement. Suspected primary on the lateral pharyngeal wall. This has shown up in two different scans plus MRI but is covered with healthy tissue and has not been positively biopsied despite much effort to do so. It is small. Med Onc. says no chemo needed and that we will proceed with radiation only. Have decided to go forward with IMRT 6 and 1/2 weeks 180 rads per day. All Rad. Onc. and med. onc. are in agreement with this treatment plan. Our cancer center is Moffitt affiliated, and we are really comfortable with our docs. Our radiation will also begin the first week of June. We are being advised to not go with a PEG. They seem to think that we will make it through without. Hubby is very strong and healthy otherwise. No other health issues or meds- trail bike rider nearly daily, etc. We have invested in a very high-end blender and I have done a lot of research on homemade liquid nutrition. We have experimented with 'green smoothies' that have pretty much a whole balanced meal (including a green organic salad!). We are trying to shoot for high calorie, high nutrition liquids he may be able to get down. Please keep posting and let us know what is decided by your hubby's med team. The people on this site are awesome, brave, and very supportive.

Thank you all for you
Thank you all for you replys.

I agree, J3rey, eveyone on this site is incredible and reading about their stories is very inspiring.

We have our big planning meeting tomorrow so I'll know more then.

Thanks for all the support.

Irishgypsie

Rochester!!
Hey, Miccmill, Sorry to here about your husband. It's interesting to see that U of R is recommending only radiation also; have you guys pursued any other opinions? I'm goingto see the Medical oncologist Today and discuss is thoughts; however he was on the tumor board that met twice and discussed my case which they came up with radiation only will see.

My opinion: As far as the PEG tube goes: Memorial Sloan also is starting to follow the trend of waiting on PEG placement! Too many people rely on there PEG tube and let there swallow muscles weekend; which can delay recovery! I got from all three hospitals that on average the pain doesn't kick in until the 3rd week so my plan is still trying to eat as mush as I can until then. Then it's ensure plus (350 calories) 2 bottles 3 times a day; plus water as much as tolerated after week 3! Yes, I agree with everyone on this board; however I am also a Registered Nurse (med-surg, ER, Psych); so i am willing to experiment and see what happens. Good Luck! Would love to talk to some local people for local support: Here is my e-mail and then we can exchange numbers: chased71@yahoo.com!

Charles

Irishgypsie

CajunEagle said:

Well.....
I'm one of those individuals you hear about.. After teaching and being a school administrator for 30 years, I get diagnosed with stage 4 left tonsilar cancer two months after I retire. Now, ain't that a hoot !!

Larry

Almost Forgot!!!
Hey Larry, GOOOOOOOOOO YankeeeeeeeeeeeeS!

stevenl

Irishgypsie said:

Rochester!!
Hey, Miccmill, Sorry to here about your husband. It's interesting to see that U of R is recommending only radiation also; have you guys pursued any other opinions? I'm goingto see the Medical oncologist Today and discuss is thoughts; however he was on the tumor board that met twice and discussed my case which they came up with radiation only will see.

My opinion: As far as the PEG tube goes: Memorial Sloan also is starting to follow the trend of waiting on PEG placement! Too many people rely on there PEG tube and let there swallow muscles weekend; which can delay recovery! I got from all three hospitals that on average the pain doesn't kick in until the 3rd week so my plan is still trying to eat as mush as I can until then. Then it's ensure plus (350 calories) 2 bottles 3 times a day; plus water as much as tolerated after week 3! Yes, I agree with everyone on this board; however I am also a Registered Nurse (med-surg, ER, Psych); so i am willing to experiment and see what happens. Good Luck! Would love to talk to some local people for local support: Here is my e-mail and then we can exchange numbers: chased71@yahoo.com!

Charles

PEG
Hey Charles,

They can say whatever they want to say about the peg. I am 4 weeks out and am doing exceptional, or so my rad doc says, and I have a Peg and it is sustaining me. You see, the problem with me is I can swallow fine and can eat a few things but only a few things.
Everything nauseates me. The smell of certain foods can set me off. I am 6'-2" and weighed
232 when this started. Consider myself a pretty tough guy. I now weigh 181.4. Without the Peg, I would be dead, no question. I am 52 and feel like I am 75. Not trying to scare you or say anything bad, but I made my docs put one in me when they put in my port. Hang in there and best of luck to you!!

Best,
Steve