Hi, my name is Nancy and this is the first time I've written so I'm a little nervous (don't ask me why, but I am). I've been reading all the posts since April when I stumbled on this website but haven't been brave enough to tell my story with battling SCC. I hope I don't bore you or ramble on too much. I really wish I had found this site sooner than I did.

I was diagnosed with SCC Stage IV, base of tongue (T3 N2) on May 22, 2003. Nine days later my husband of almost 23 years passed away suddenly (we was only 56 and I'm 11 years younger than he was). So needless to say I was scared to death from the start. My son is 21 and is away at college so I guess you could say that not only was I the patient, but I was also the caregiver. I underwent surgery 6 weeks later on July 15, 2003 for a total glossectomy, free flap reconstruction (taken from my abdomen), and right and left neck dissection. They removed 34 lymph nodes from the left side - all negative - and 53 lumph nodes from the right side - 5 were positive. I spent 2 weeks at Mt. Sinai hospital and then was transferred to a step down facility (a nursing home in my case) for another 2 weeks. After healing and recooperating for about 6 weeks I underwent 37 treaments of radiation and 3 treatments of chemo (Cisplatin). I was also given a daily shot (in the upper hip area) of amifostine to try to save as much salivary function as possible. I finished treatments on November 6, 2003. I had all the same crummy symptoms of nausea, dry mouth, tiredness, etc., etc., and now I still have constant ringing in my ears, jolts of pain from my jaw up to my ears and am still tired which is one of the most frustrating symptoms that seems to be lingering on a lot longer than I would like. After 8 1/2 months I had my trach and feeding tube removed. My feeding tube never gave me a problem except that it was cumbersome and at times it got in the way. Even so, that feeding tube was a lifesaver for me before, during and after treatments.

Well, that's about it for now. Thanks for listening and I wish I had written sooner. You all are such knowledgeable, compassionate people and there are many times lately that I've needed to bounce a question off someone, a shoulder to cry on or just to vent my frustrations. I hope you don't mind if I do that occasionally although I don't like to make that a habit! I spend a lot of time just trying to stay positive and upbeat instead of letting this disease get the best of me. Thanks for being here and listening.

Nancy

Nancy
Well by now you know more about us than we do about you.. you are here now so don't go away.. you know by now we are mostly crazy.. but you are welcome to join us.. we can offer shoulders to lean on or wall to bounce thing off.. don't you dare leave now.. want your input here.. it is important.. everyone of us facing this need to stay together..
love and hugs
Helen

Welcome to the club nobody wants to join Nancy!

Sounds like you had similer treatment as I did and in about the same time frame. It was no picnic. Don't hesitate to ask any question you want to. It seems someone will have an answer. I joined last July and was member #853. There are now over 1300 members.

One of the goals of the foundation is to get the word out about Oral Cancer. Most of us are DX in late stages of the disease due to lack of knowledge. You can go back and read some older posts about the stat's and survival percentages.
We like to not think about the numbers and think positive but the numbers don't lie.

I wish you nothing but good check-up's and please continue to post about your experiences. Those who follow
will gain knowledge about oral cancer which empowers them as they fight this battle.

Welcome again, Dan

Bless You Nancy...you have already suffered so much...keep on fighting . You will find lots of support here, these guys will become so important in your life..they have been through it all.. been knocked down and have come right back up again!
Danny Boy up there is a perfect example ..scared to death but generous to a fault with his time for others.
May your God go with you.
Marica

Dear Nancy,
Welcome! I, like Dan above, started reading here last year around August after my hubby had a partial glossectomy. Anyway, it's all been a frightening and hard experience, but coming to the board has helped me alot. I will pray for you...I cannot imagine how hard it was to lose a spouse right after diagnosis. But here you are, healing and making it. God gives us such strength even when we could never imagine having enough. You are truly an inspiration for the rest of us.
Take care!
Debbie

Dearest Nancy!!!

Welcome! I can't believe you've been hiding since April. You give me hope that I will be able to eat again. I had a near total glossectomy in November 03 with radiation and chemo in Jan 04. I struggle with eating, and choking, and swallowing. How did you cope? You are an inspiration to me as well. To loose your husband during your own battle and share with us your story honors us all.

Keep us posted with your progress. Don't be a stranger.
Lynn

Nancy I agree with Lynn you also give me hope that I may eat again...Yeah,,I am somewhat surprised that you waited so long to jump on, and we are thankful that you did. You have gone thru so much already, God love you. I just found the site, and it has already been so helpful to me and for me. I had to do something. The doctors dont have all the answers, people that are going thru it do. God Bless you Nancy you are among friends now....Always, Miss Vicki

Hi Nancy!

Welcome to the club...nobody wants to join. I am so sorry for all you have had to endure. The important thing is that you are here, now, amongst all of us survivors and caregivers. We all lean on each other at times; we all hold each other up at times; and Lord knows, we have all had to vent our frustrations. You belong right here in the midst of us.

Thank you for sharing your story with us. As Lynn said, it is truly an honor.

Ed

Dear Nancy,
Welcome and thank you for your words of hope! I am so glad you joined us here as we always are willing to share and to listen. Thank you for trusting us to do that for you.
God bless
Judy U

Welcome Nancy!! We hope you do make it a habit of sticking around. You'll find a lot of hope here, plus I'm sure you'll be able to help us as well by sharing your experiences... God bless!

Nancy:Let me extend my welcome to you also. It sounds as if the world kind of caved in on you what with the diagnosis and then the unexpected loss of your husband. Not to get practicle or anything, but I hope someone was able to help you with the paperwork aspects of the loss of your husband, insurance filings and so forth. When my father passed, many years ago now, my mother needed weeks of help with that stuff. If it was put on the back burner, perhaps your son can sort it out for you this summer.

I was also very frustrated with the tiredness after rad and chemo. Our treatments sound similar in that respect. What they found was that the rad and cisplatin killed my white and red blood cells pretty good, along with the cancer, and put me on Prokrit which built my blood counts back up to past normal in 6 weeks after weekly shots administered at my house. You might ask about that if your energy problems are due to blood counts that are way low.

Hi All,

I wanted to say THANKS! for making me so welcome to this club that nobody wants to join and for making me feel so welcome and at home. I know that I've found some new "best" friends. In response to some of the things you brought up in your reply, Kirk, I had six weeks from the day my husband passed away (which was Memorial Day ...) till I had surgery so I put most of my energy in trying to settle as many aspects of his estate as I could before checking into the hospital. My husband was also self-employed so I also had to dissolve all his buisness dealings which was probably the hardest part because there were many things I didn't know where to start. I've done pretty well except for those expected notices from the State of New Jersey or the Federal Government asking for information that I've given to them a hundred times already!

Kirk, you also mentioned that you were given Procrit to help boost your energy. Well yesterday I went to see my oncologist for my three month checkup or "tune up" as I like to call it. Everything checked out fine which gave me a sigh of relief. My white blood count has always been on the low side during and after treatment but not enough to "qualify" me for using Procrit. I voiced to my doc yesterday that I can't continue this way in which I was literally falling asleep behind the wheel (thanks GOD I would catch myself before something happened) and also at work. He started me on Provigil which is mostly used to treat narcolepsy patients. It's suppose to help in keeping me awake and I'm happy to report that although today was the first time using it, it was also the first time in a long time that I didn't catch myself falling asleep at the most inopportune times! Let's hope this drug keeps working like it is so far!

Thanks again for embracing me with open arms - you don't know how much that means to me. Family and friends try to understand but in reality they can't even begin. They have a hard time seeing me as a new widow, no less a slave to cancer, so to speak.

Take care and hugs from me,

Nancy

Nancy, just an idea, but when your docs did their follow up blood work, did anyone check your thyroid function? Hypothyroidism from radiation is a common event after treatment, and one of it's primary symptoms is lack of energy. Many of us are on Synthroid from now till forever, and it works well with little in the way of side effects.

Welcome Nancy,

Sorry I'm late in posting. Been away from the board for a couple of days.
Just`wanted to add my voice to others and say we are looking forward to hearing from you and having you share.

Take care,
Dinah

Nancy,you are an example of courage. I am new too to this forum but I join the others to welcome you. Thanks for sharing your experience.

Hugs

Hi Nancy and welcome to this forum.
I am 10 months post treatment (surgery and radiation) and approx. 2 months ago started on Synthroid. I was overwhelmingly tired, cold and just plain miserable energy wise so they did a thyroid function test. After approx. 2 weeks on the medication it was an amazing improvement! I would suggest asking for this test if you haven't had it.
Again, welcome!
Minnie

Nancy-
Welcome and thank you for sharing your journey with us. Sometimes when we are down and we read the journey that someone else has traveled we realize we haven't had it half as bad. Wow - you are really an inspiration of strength and endurance!! The Synthroid has worked for me, too and I'm 21 months past treatment so keep it in mind. God bless you and my prayers are with you and your family. Love-Kris

Thanks for the advice about having my thyroid checked - I'm not sure if they checked that when they did my blood test this past Monday but I think I'll call my doctor and ask if they did. Maybe that's the culprit for my being so tired and the muscles in my legs are really bothering me - they ache - is that possibly a symptom of the thyroid not functioning properly? Thanks for the input guys!

Nancy,

I can only share what I have been told about the leg aches (and they seemed to be perfectly on target every time)
It is sometimes a function of blood counts (such as low red and hemoglobin) It is the bone marrow thing working to make more good cells. Since I see you have had chemo this could possibly be what is happening with you. Being tired is also a symptom of low red & hemoglobin. Procrit is used for low red. Neupigen is used for low white.

Maybe your reds are borderline low? Just a thought and a shared experience.

Did you ask him about the aches in your legs?

Dinah

Hello Nancy

Welcome to this board. It sounds like you have been through a lot in recent times. I know how you feel in some ways. I have no live-in caregiver and was self-employed when I became ill. I had to leave my hometown to receive treatment and had to organise my clients and my personal affairs before I left. I have found this board so helpful and supportive.

The thyroid test is a good idea. I too was hypothyroidic and could hardly put one foot in front of the other at one stage. Thyroxine replacement is simple and very effective.

From Helen, with love.

Welcome Nancy! Yes muscle aches can be a symptom of Hypothyroid. The test is an easy blood sample so go ahead and get it.

I touched base with my doctor yesterday to see if during the blood work they checked for my thyroid. They did check and everything with my thyroid is okay which is good news. I did ask my doctor about the aches in my legs and he said that given the chemo I went through, this is quite common but said to keep an eye(?) on it and report back to him if necessary before I see again for my next 3 month tuneup. As far as the tiredness, he did put me on provigil to help me stay awake (I literally was falling asleep while driving - not good - and also falling asleep at work - also not good!). So far (it's only been 3 days) the provigil is working so I'm really happy about that! Thanks for your helpful responses. It's reassuring to know that people like you are out there and just a click away to help me through these rough times.

Enjoy the day, Nancy

Nancy,

I have battled leg aches and pains for many years. Doctors have theorized that side-effects of hepatitis could have been the cause. Net of all the doctors I have been to and through, lactic acid buildup is very often a source. There are a few simple things you can do. First, make sure you drink lots of water. This is by far the best possible thing for you and especially after the stress, chemo/rad, surgery, etc. As often as you can think of it, try to stretch the muscles that ache. Much of the sitting and laying around after all the surgery and treatment tends to diminish the muscle fiber and walking constantly or even standing would benefit by stretching and massage. If you are not on a regular multivitamin, you should be anyway, regardless of all the things you have been through but especially after the toxic effects of chemo and radiation. Vitamin B-6 and B-12, calcium and magnesium would help the muscle aches, too. If you have a Whole Foods around where you live they have a great magnesium bath salt that is great for muscle aches and pains. I have to warn you, though, it will leave your towels with a strong odor for longer than you can imagine! You should have your doctor tell you exactly how much B-6, B-12, calcium and/or magnesium to take because he would be more knowledgable based on your treatments and your present condition, labs, etc.

In addition to all of the above, try ice on the precise area that is sore. Leave it on for 10-15 minutes. It will burn at first but resist the temptation to take it off. It will go more numb and then start benefitting the inflamed muscle tissue.

All of these are pretty simple straightforward things but your doctor should guide you on the vitamins and minerals. I hope this helps your muscles calm down some.

Ed