newbie

topcat100

47 yr old male on march 6 of this year found out i had parotid gland cancer stage 4 adenocaecinoma nos high grade poorely differanted margins involved peripheral soft tissue lymph vascular invasion present perineural invasion present lymph nodes 2 removed extranodal exstension presence extraparenchymal exstension gradeing stage 4 pt3 pn 2b  no mx i went thru 7 weeks of taxol and carboplatinum every monday and monday thru friday irmt radiation  ilost 20 pounds my tongue got beet up pretty bad and i lost alot of hair on back of head tast loss also finished on june 12 8 weeks post treatment still cant believe this happened to me im going for pet scan in 4 weeks for checkup i went thru hell like most of us will i have a chance on beating this or not my mind is not all ther since diagnosis and doctors will not give any gaurantees as i wasstold with cancer looking for help and guidance and input thx

josh r.

Hi Topcat100,
You have

Hi Topcat100,

You have received a hard blow and have been thru alot but you can get through this and get to the next level which is accepting that your life has changed forever, but that you do still have a life. True your doctors can not give you guarantees but they can work with you medically and they or their staff can put you in contact with groups in your area that are for cancer survivors and that those along with this caring group can help you move on to your next steps. I hope that you have caring and loving family and or friends in your home that can give you support as you make your way up each stage of recovery. We have been where you are to one degree or another and will be here for you as you take control of your life little by little and move forward. Be strong, josh r.

wmc

Welcome to the H&N

Welcome to the H&N Group, and sorry you need to be here but you did find the best one there is. Mine was Larynx SCC and I am one of the few that never had Chemo or rad, so I will let the others answer your questions you have and will in the future. Yu have gone through a lot so far and found out it is a bumpy road to go down. You might want to read the Superthread at the top of the form it hav many answers. What we need to focus on is that with suport we can fight and beat the beast. This is a wonderful group for suport, understanding, knowledge, and darn good listeners when you need. Sometimes it helps just to be able to write it down knowing people do understand what you are going through. 

Just wanted to say Hi and we'll keep you in our prayers.

Bill

connieprice1

You Sure Can!

topcat, Well you made it so far and chemo & radiation is not easy. My wife was stage IV base of tongue 2 lymph nodes involved. When the doctor told us the tumor was too large for surgery and that chemo & radiation was the 1st & 2nd options. We were not too optimistic but the chemo shrinked the lymph nodes to normal size after her 1st treatment (they were swollen the size of walnuts on her neck) we became optimistic and it was rough on Connie but she toughed it out. She went through her treatment in 2011 so we have been blessed so far. Connie cannot eat spicy food and our lives have changed somewhat but so far so good. Try to hang in there and hopefully you get clean scans in the future. 

                             Wishing you the Best, Homer & Connie

topcat100

connieprice1 said:

You Sure Can!

topcat, Well you made it so far and chemo & radiation is not easy. My wife was stage IV base of tongue 2 lymph nodes involved. When the doctor told us the tumor was too large for surgery and that chemo & radiation was the 1st & 2nd options. We were not too optimistic but the chemo shrinked the lymph nodes to normal size after her 1st treatment (they were swollen the size of walnuts on her neck) we became optimistic and it was rough on Connie but she toughed it out. She went through her treatment in 2011 so we have been blessed so far. Connie cannot eat spicy food and our lives have changed somewhat but so far so good. Try to hang in there and hopefully you get clean scans in the future. 

                             Wishing you the Best, Homer & Connie

thx

thank you , thank you very much it means alot to me

topcat100

josh r. said:

Hi Topcat100,
You have

Hi Topcat100,

You have received a hard blow and have been thru alot but you can get through this and get to the next level which is accepting that your life has changed forever, but that you do still have a life. True your doctors can not give you guarantees but they can work with you medically and they or their staff can put you in contact with groups in your area that are for cancer survivors and that those along with this caring group can help you move on to your next steps. I hope that you have caring and loving family and or friends in your home that can give you support as you make your way up each stage of recovery. We have been where you are to one degree or another and will be here for you as you take control of your life little by little and move forward. Be strong, josh r.

thx

thank you i will fight for as long as i can i too was inspired by jimmy v cryeing when i see and hear his speech on espn for his fundraiser every year im trying to keep it together and battle i dont want to die im too young i will be as strong as i can josh thank you god bless you and everyone who has and is battleing

topcat100

wmc said:

Welcome to the H&N

Welcome to the H&N Group, and sorry you need to be here but you did find the best one there is. Mine was Larynx SCC and I am one of the few that never had Chemo or rad, so I will let the others answer your questions you have and will in the future. Yu have gone through a lot so far and found out it is a bumpy road to go down. You might want to read the Superthread at the top of the form it hav many answers. What we need to focus on is that with suport we can fight and beat the beast. This is a wonderful group for suport, understanding, knowledge, and darn good listeners when you need. Sometimes it helps just to be able to write it down knowing people do understand what you are going through. 

Just wanted to say Hi and we'll keep you in our prayers.

Bill

thx

thank you billy prey for me and others im doing the best i can thank you for your support

debbiejeanne

tc, i'm so sorry u r go'n

tc, i'm so sorry u r go'n thru this.  it is a very rough road but u will make it.  there are many here who have had a bad dx and are still here and encouraging others.  we will be here for u when u need us.  try to be positive and live life as best u can.  you are alive so u showed cancer who is boss.  live on!!

God bless you,

dj

hwt

debbiejeanne said:

tc, i'm so sorry u r go'n

tc, i'm so sorry u r go'n thru this.  it is a very rough road but u will make it.  there are many here who have had a bad dx and are still here and encouraging others.  we will be here for u when u need us.  try to be positive and live life as best u can.  you are alive so u showed cancer who is boss.  live on!!

God bless you,

dj

Topcat

Sorry you had the need to find us. Plenty of success stories here and many more that have gone on with life and just check in once in awhile.  Hope will take you far......

God bless,

Candi

donfoo

Welcome to CSN

Hi,

Glad you joined but as they say better late than never. You are past treatment and into recovery. You will start feeling better and battling fewer side effects shortly. Hang in there. Don

topcat100

donfoo said:

Welcome to CSN

Hi,

Glad you joined but as they say better late than never. You are past treatment and into recovery. You will start feeling better and battling fewer side effects shortly. Hang in there. Don

thx

thx don i was looking at your profile i saw you had it rough also thank you for words of wisdom i guess in time hopefully it ill be ok yes im still healing 8 weeks post op im wondering how long it takes to get back to yourself physically mentally emotionally how long did it take you don they were telling mr 6monthes a year is that for real im 47 im just tired alot and weak trying to do walks and eat and little things you dont get much help or answers from doctors thx

topcat100

hwt said:

Topcat

Sorry you had the need to find us. Plenty of success stories here and many more that have gone on with life and just check in once in awhile.  Hope will take you far......

God bless,

Candi

hope

thx candi thank you i mean it

topcat100

debbiejeanne said:

tc, i'm so sorry u r go'n

tc, i'm so sorry u r go'n thru this.  it is a very rough road but u will make it.  there are many here who have had a bad dx and are still here and encouraging others.  we will be here for u when u need us.  try to be positive and live life as best u can.  you are alive so u showed cancer who is boss.  live on!!

God bless you,

dj

thx

thx debbie jean it means alot to me thank you god bless us

hwt

topcat100 said:

thx

thx don i was looking at your profile i saw you had it rough also thank you for words of wisdom i guess in time hopefully it ill be ok yes im still healing 8 weeks post op im wondering how long it takes to get back to yourself physically mentally emotionally how long did it take you don they were telling mr 6monthes a year is that for real im 47 im just tired alot and weak trying to do walks and eat and little things you dont get much help or answers from doctors thx

topcat

I had my surgery 01/31 and finished rads/chemo mid May, that was 2012. I recall 5 weeks post tx I felt like I turned the corner and my week 6 actually had energy to spare. Everyone's body is different. I always continued with atleast 1 Ensure a day and whenever I tried to discontinue it, I noticed a drop in energy. Keep up the short walks and you will build your endurance. On days when you don't think you have taken in enough nutrients or calories, supplement with the Ensure. And stay hydrated! Listen to your body and if it says nap then nap. Mid-tx I think I slept 20-24 hours a day forcing myself to get up for a brief walk and nutrition was the extent of my day.

topcat100

hwt said:

topcat

I had my surgery 01/31 and finished rads/chemo mid May, that was 2012. I recall 5 weeks post tx I felt like I turned the corner and my week 6 actually had energy to spare. Everyone's body is different. I always continued with atleast 1 Ensure a day and whenever I tried to discontinue it, I noticed a drop in energy. Keep up the short walks and you will build your endurance. On days when you don't think you have taken in enough nutrients or calories, supplement with the Ensure. And stay hydrated! Listen to your body and if it says nap then nap. Mid-tx I think I slept 20-24 hours a day forcing myself to get up for a brief walk and nutrition was the extent of my day.

candi i felt good up until 2 weeks ago 6weeks post last 2 my legs are so heavy and im very tired i take my walks 1 in morning about 20 min and 1 at night about 20 minutes i ws so physicall being self employeed for 25 yrs as a contractor now its like im 80 yrs old i still drink ensures 2 -3 a day iweighed in at 168 now 150 after treatment i try to eat everyday but sometimes its only a little bit nutrionist said in time youl put weight back on and muscle i just dont see how between pet scan did treatment work anxiety and everything else  im breaking down

CivilMatt

welcome

topcat100,

Welcome to the H&N forum, sorry that you are here, sorry that any of us are here.

Congratulations on finishing treatments, now it is just a matter of feeling better and getting on with your life.  For me the H&N clock ran (still runs) very slowly, but I continue to see improvements to taste and  saliva.

Keep getting better,

Matt

hwt

topcat100 said:

candi i felt good up until 2 weeks ago 6weeks post last 2 my legs are so heavy and im very tired i take my walks 1 in morning about 20 min and 1 at night about 20 minutes i ws so physicall being self employeed for 25 yrs as a contractor now its like im 80 yrs old i still drink ensures 2 -3 a day iweighed in at 168 now 150 after treatment i try to eat everyday but sometimes its only a little bit nutrionist said in time youl put weight back on and muscle i just dont see how between pet scan did treatment work anxiety and everything else  im breaking down

Stay strong

It's a slow process. You will have to work at gaining the weight. I recently noticed that a little tiny individual serving of Haagen Daz gelato has nearly twice as many calories as the same amt. of ice cream. Try to be patient and remember anxiety burns calories too! Several on here go to the gym and run marathons so it will come with time.

phrannie51

I believe you're going to make it,

Topcat!  There were probably a number of us who.....at 8 weeks out of treatment wondered the same thing, but here we are to tell the tale.  I'm so glad you found us!  You'll find so many smart, supportive, and kind people on this board....it's the best forum on the internet.

p

topcat100

CivilMatt said:

welcome

topcat100,

Welcome to the H&N forum, sorry that you are here, sorry that any of us are here.

Congratulations on finishing treatments, now it is just a matter of feeling better and getting on with your life.  For me the H&N clock ran (still runs) very slowly, but I continue to see improvements to taste and  saliva.

Keep getting better,

Matt

thx

thanks matt its all new to me slow but steady i guess in time i hope i have time im afraid thanks tc

topcat100

phrannie51 said:

I believe you're going to make it,

Topcat!  There were probably a number of us who.....at 8 weeks out of treatment wondered the same thing, but here we are to tell the tale.  I'm so glad you found us!  You'll find so many smart, supportive, and kind people on this board....it's the best forum on the internet.

p

thxs

thank you i need support i still cant believe this has happened im trying to keep it together i hope and prey that i have a second chance im too young to pass i have to take care of my mom and still live my life its overwelming first scan sept 8 of this yr i dont know what will happen i went thru so much just like everyone else with this cancer thing god bless you and all of us i want to live more time more living i prey to god thank you phrannie

wmc

topcat100 said:

thxs

thank you i need support i still cant believe this has happened im trying to keep it together i hope and prey that i have a second chance im too young to pass i have to take care of my mom and still live my life its overwelming first scan sept 8 of this yr i dont know what will happen i went thru so much just like everyone else with this cancer thing god bless you and all of us i want to live more time more living i prey to god thank you phrannie

What helped me was...

When I met with the tumor board and my doctor came in and sat down and said,"Your lungs are to bad you won't servive radiation or surgery". The only thing we can do is, remove your larynx and you will breath through your neck and we can do the surgery. Not much of a choices, I was T4; N2; M0; at that time. Lets do the surgery. I came out a T3;N0; M0; and no voice and they took 86 glands in my neck. 

Now whate helped me was, it doesn't matter WHY. The only thing that matters is, what I was going to do about it now. Today matters, do the best you can do. You will have bad days and some setbacks, but what we do about it is what counts. You keep an attitude you will beat this beast, and you will. You think positive and just take today on. You will get to tomorrow soon enough. Now on the bad days, you come here and just put into words, yes vent and get it out. That's why were here, I vent as well as some others. It helps just knowing these people do really understand how you are felling and going through. We all help each other and no one is alone. We do understand being scared, we all were at one time or another. Just being told ...You have Cancer, is the worst words you can hear. The best words are NED [No Evendance of Desease]

You will fight this and get through it as well.  Try to have a better day.

BILL