Another "Newbie"

Judy.2

I've been following this board daily for a couple months now, and feel it's time I introduce myself. Actually, I tried to last week, and after writing a rather lengthy review of my health history, my message just seemed to disappear. I'm determined to try again, as I'm really impressed with the members on this board, and the way they share their experiences in effort to help someone else. I hope I can do the same.
Here I am in a "nutshell". 61 year young female, married to her best friend, for almost 40 years. Two years ago this month I began treatment for Stage 4, Squamous Cell, Base of tongue, more that one lymph node involved. Like most of you, it really rocked my world. I've never smoked (anything...what kind of 60's child was I, anyway?);) I drank very little, expecially by Wisconsin standards!
I'm really jittery about losing this post...so I'll close for now, but look forward to sharing more of my story with you soon.
Life is soooo good!!
Judy

ratface

sounds like you can teach me somethings
Welcome. So your two years post treatment. perhaps you can elaborate hoe things are going for you. clear pet scans? How long to get taste buds back? How long to feel somewhat strong again.

Me I just finished treatment and am waiting for my first scans and possibly an upcomming neck disection. did you have one of those?

You sound like a survivor. congrats and keep on posting.

Judy.2

ratface said:

sounds like you can teach me somethings
Welcome. So your two years post treatment. perhaps you can elaborate hoe things are going for you. clear pet scans? How long to get taste buds back? How long to feel somewhat strong again.

Me I just finished treatment and am waiting for my first scans and possibly an upcomming neck disection. did you have one of those?

You sound like a survivor. congrats and keep on posting.

Hi, Ratface...
Yes, things
Hi, Ratface...
Yes, things are going well for me. My treatment went as follows: Needle biopsy in lymph node, biopsy on base of tongue to determine site of origin. Overnight stay, having pic and peg inserted, and also another heart test that was required when I signed up to be part of a trial study. Soon to follow was six weeks of IMRT, twice on Fridays. During that time I received two treatments of cisplatnin. I was hospitalised shortly after my first chemo treatment, for about a week. Then, the last week of radiation, I was also hospitalised, and stayed there till the docs felt the radiation was "calming down". About three weeks. I had quite a burn, covering my entire neck & upper chest, with the worst being on my left side. (same as affected lymph nodes). My ENT had told me going into all of this that as soon as I healed up enough, he would be doing the disection. So, in late January 08, I had around 16 nodes removed, and all tested clear. Almost a full month later, after my ENT had felt the healing was excellent, I felt a sharp pain in my shoulder area. It turned out I had a raging staph infection, that had apparently not been able to rise to the surface soon after surgery, because of the radiation damage to the tissue in that area. Back in the hospital I went, for nearly a month. I was told that this infection put my life in more danger than the cancer treatment did. The doctors were quite impressed with it, and it is really rare for an infection to stay "hidden" like it did for so long.
I don't know if it was the radiation treatments, or the infection, but I have a rather hugh case of radiation fibrosis, affecting most of my neck, and left shoulder. I have been in PT for a year now. My shoulder is coming along well, my neck..not much change.
I've had CAT scans every 6 months. The only PET scan I had was before I started treatment. I believe they feel the fibrosis would cloud the PET scan..possibly causing false positives.
My ENT scopes my throat every 3 months, and is extremely happy with what he sees.
I do have swallowing issues to deal with, but I consider myself lucky. My taste buds have returned quite well. As many have said here, the sweet taste seems to be the last to return.
My saliva seems pretty good, too. I sip on water almost constantly...more for a dry throat, than dry mouth.
I returned to full time work, as a bookeeper, at a local high school in the fall of 08. I tired very easy, and still do. But being aound the kids, and terrific staff is much better for me than staying home, not to mention the needed health insurance.
Gosh, I appologise for rambling on, so. I'm really eager to share my experience, and hopefully help you, and others in their journey. I definatly have some issues that I could use some advice for, too. The "new normal" isn't always easy to figure out!
Best to you, Ratface. It's great to finally "talk" to you!
Judy

doitforoj

Judy.2 said:

Hi, Ratface...
Yes, things
Hi, Ratface...
Yes, things are going well for me. My treatment went as follows: Needle biopsy in lymph node, biopsy on base of tongue to determine site of origin. Overnight stay, having pic and peg inserted, and also another heart test that was required when I signed up to be part of a trial study. Soon to follow was six weeks of IMRT, twice on Fridays. During that time I received two treatments of cisplatnin. I was hospitalised shortly after my first chemo treatment, for about a week. Then, the last week of radiation, I was also hospitalised, and stayed there till the docs felt the radiation was "calming down". About three weeks. I had quite a burn, covering my entire neck & upper chest, with the worst being on my left side. (same as affected lymph nodes). My ENT had told me going into all of this that as soon as I healed up enough, he would be doing the disection. So, in late January 08, I had around 16 nodes removed, and all tested clear. Almost a full month later, after my ENT had felt the healing was excellent, I felt a sharp pain in my shoulder area. It turned out I had a raging staph infection, that had apparently not been able to rise to the surface soon after surgery, because of the radiation damage to the tissue in that area. Back in the hospital I went, for nearly a month. I was told that this infection put my life in more danger than the cancer treatment did. The doctors were quite impressed with it, and it is really rare for an infection to stay "hidden" like it did for so long.
I don't know if it was the radiation treatments, or the infection, but I have a rather hugh case of radiation fibrosis, affecting most of my neck, and left shoulder. I have been in PT for a year now. My shoulder is coming along well, my neck..not much change.
I've had CAT scans every 6 months. The only PET scan I had was before I started treatment. I believe they feel the fibrosis would cloud the PET scan..possibly causing false positives.
My ENT scopes my throat every 3 months, and is extremely happy with what he sees.
I do have swallowing issues to deal with, but I consider myself lucky. My taste buds have returned quite well. As many have said here, the sweet taste seems to be the last to return.
My saliva seems pretty good, too. I sip on water almost constantly...more for a dry throat, than dry mouth.
I returned to full time work, as a bookeeper, at a local high school in the fall of 08. I tired very easy, and still do. But being aound the kids, and terrific staff is much better for me than staying home, not to mention the needed health insurance.
Gosh, I appologise for rambling on, so. I'm really eager to share my experience, and hopefully help you, and others in their journey. I definatly have some issues that I could use some advice for, too. The "new normal" isn't always easy to figure out!
Best to you, Ratface. It's great to finally "talk" to you!
Judy

thank you
Judy,

Thank you very much for sharing. My name is Kurt and I have SCC base of tongue and lymphs in neck. Today I had out patient surgery so they could look at my throat and bioppsy the lump in my throat for cause. Also put in feeding peg. They say i will do chemo and rad. Next week I find out the specifics. The first thing that I took from your post was that you are alive. I understand it has been a horrible ordeal for you and the journey does not seem over yet, but trust me, for someone about to begin this journey it brings tears to my eyes to hear someone who has travel it and is alive. I am sure the are still emotional scars that fears that you face, but I know one thing for sure. The people here can help, just as you have helped me this evening thank you and know that I am thinking of you and continued fight.

Kurt
P.S. What is the only word in the english dictionary that has three double letters in a row.

bOOKKEEper

Judy.2

doitforoj said:

thank you
Judy,

Thank you very much for sharing. My name is Kurt and I have SCC base of tongue and lymphs in neck. Today I had out patient surgery so they could look at my throat and bioppsy the lump in my throat for cause. Also put in feeding peg. They say i will do chemo and rad. Next week I find out the specifics. The first thing that I took from your post was that you are alive. I understand it has been a horrible ordeal for you and the journey does not seem over yet, but trust me, for someone about to begin this journey it brings tears to my eyes to hear someone who has travel it and is alive. I am sure the are still emotional scars that fears that you face, but I know one thing for sure. The people here can help, just as you have helped me this evening thank you and know that I am thinking of you and continued fight.

Kurt
P.S. What is the only word in the english dictionary that has three double letters in a row.

bOOKKEEper

Hi Kurt,
Thank you, for your Thank you! I understand, all too well, how you are feeling these days. I have to share with you, that in those early, scary days, I had no idea of the blessings about to ascend on me. I read articles written by cancer survivors that said they would never "give back" their treatment experience, even if they could. I thought they were NUTS. Now, again, I know well, what they were talking about. I was unprepared for the outpouring of love and concern that was waiting around the corner for me. I could go on and on about some of the efforts that my family, friends, co-workers and students at Wausau West High School did for myself, and my husband. And I shouldn't forget the medical world, either. I hope I'll be able to share some of these stories at some point. I pray that you will have a similar experience.
I have to get moving. My work day starts at 6:30 am. (the same time my radiation treatments were!) Sure don't hear me complaing about having to go to work!
Fondly,
Judy

Hondo

Judy2

Glad to have you here on csn, I feel this is the one place where I can talk to others about my cancer and people really understand and give a lot of support. At first from talking to my Doctors I believed I was the only person in the USA with NPC, I had no one to talk to about it and did not know what to do. Years later I found this site by accident and have found out more about NPC then I did from the doctors. There is a lot of information from people with all types of Cancer who have been there and are willing to help others through there trial. Thanks for becoming one of us.

God Bless

Judy.2

Hondo said:

Judy2

Glad to have you here on csn, I feel this is the one place where I can talk to others about my cancer and people really understand and give a lot of support. At first from talking to my Doctors I believed I was the only person in the USA with NPC, I had no one to talk to about it and did not know what to do. Years later I found this site by accident and have found out more about NPC then I did from the doctors. There is a lot of information from people with all types of Cancer who have been there and are willing to help others through there trial. Thanks for becoming one of us.

God Bless

Hi Hondo,
Thanks for the kind words. I'm really happy I've found this site, and am now ready to be an active part of it. Despite the totally wonderful support network I have had the past two years, I'm feeling that being part of a community that really understands what this journey is like is my next step. I love that there are people here, that have been survivors longer than me, who can share stories that will help me keep my own journey in perspective, and perhaps help me. (Your questions about jaw flexibility made me realise that I needed to do some stretching!) I find it fascinating that there are quite a few people here,who are on a similar time frame as myself, and have had very similar experiences. Then there are the "youngsters" in the group, who are just beginning their journey. Their questions help me see how far I have come.
Tomorrow I see my ENT, for another throat scope. I don't like them....but just relax and remind myself I've been through much worse! Besides, he's so darned cute, I almost look forward to my appointments! How come the doctors keep getting younger and younger?
Fondly,
Judy

delnative

Judy.2 said:

Hi Kurt,
Thank you, for your Thank you! I understand, all too well, how you are feeling these days. I have to share with you, that in those early, scary days, I had no idea of the blessings about to ascend on me. I read articles written by cancer survivors that said they would never "give back" their treatment experience, even if they could. I thought they were NUTS. Now, again, I know well, what they were talking about. I was unprepared for the outpouring of love and concern that was waiting around the corner for me. I could go on and on about some of the efforts that my family, friends, co-workers and students at Wausau West High School did for myself, and my husband. And I shouldn't forget the medical world, either. I hope I'll be able to share some of these stories at some point. I pray that you will have a similar experience.
I have to get moving. My work day starts at 6:30 am. (the same time my radiation treatments were!) Sure don't hear me complaing about having to go to work!
Fondly,
Judy

Me too!
Hey, Judy. I'm glad to hear someone else say how much that treatment meant, not just physically but mentally and emotionally.
It changed my whole outlook on life, and finally made me realize that hey, it's not all about me. There are other people out there who need help, and now I'd like to help. And where once I thought that I don't have enough friends to act as pallbearers when I finally do kick off, once word got out that I had cancer I found out that I have friends that I didn't even know I had.
Welcome to the group!

--Jim in Delaware
(Stage III SCC right tonsil, one year out of treatment)