Hello all,
Not sure if this site and all the reading I've done on the computor is helping me or making things worse, quite frankly. Unfortunately, I have read about so many who have passed away after being on this site that it has me a bit shaken about my situation.
I was treated for Stage iv Base of Tongue Squamous Cell cancer that was diagnosed in January of 2007 with my staging being T2N2bMO after 3 biopsies were performed and the primary was confirmed in February. In March I began 33 IMRT Radiation treatments with Cyslatin Chemo on days 2,21, and 42. I finished tratment on April 20,2007 and had my Peg tube removed in August. So basicly I have been finished with treatment for 5+ months and I am still having problems with fatigue, very thick stringy saliva, throat discomfort, upper back pain, and severe nuaprothy in my feet and hands. I did have a cat scan of my brain, neck and chest 8 weeks after treatment which showed abnormal findings in the center and right side of my Base of Tongue and unfortunately my RO thought their was a 85% chance my tumor had spread from the left side of my Base of Tongue and that my tumor was inoperable. My brain scan and chest scan came back as being normal. I then went to see a surgeon at John Hopkins for a second opinion and he felt after reviewing my scan that my tongue could be showing dead or scar tissue from the radiation, so a biopsy would be needed. 5 weeks later I did receive the results of a biopsy performed by my Surgeon at Emory University in Atlanta and it came back as being negative for any cancer. Unfortunately, I spent 5 weeks thinking that their was a 85% chance I was basicly going to dye if my RO was correct.
I'm 54 and prior to being diagnosed with throat cancer, I was extremely active. In 1996 I did the World Championship Ironman in Kona , Hawaii, and I have always stayed in good shape by exercising about 2 hours almost every morning before work. This treatment has beaten the hell out of me and I never dreamed that I would be basicly totally disabled from my second month of treatment and for 4 months therafter. To the contrary my doctors predicted I would be up and running in 3 months(2 months of treatment and 1 of recovery). I am now working part time as a Civil Trial Attorney, but it has been difficult and my constantly having to spit in a cup this awful wallpaper paste stringy saliva is driving me crazy and is inbarrasing. Yes, it has gotten better over time as I needed to spit about every 10 minutes 24 hours a day after about 20 Radiation treatments. I am now sleeping thru the night and can spit when I wake up and during the day every a few times every hour or so. It seems to get worse in the evening. I also still have this uncomfortable not so severe pain in the back of my throat from where the thick saliva comes from, but its definately below where my tumor was in my Tongue.
Also, I have read so much about reoccurance and lung metastasis that I AM NOW MAKING MYSELF CRAZY worrying about the pain in my throat, the pain in my back, and slight discomfort in the lower part of my rib cage on occassion as being lung cancer even though I had a chest scan about 17 weeks ago. I spend much too much time reading about throat cancer here on the web, including this site as I am making myself crazy worrying about these symptoms.
So their you have it. Curious to know?
-Have any others suffered from thick stringy saliva 5+ months after treatment of radiation and chemo?
-Have others had throat pain and/or throat discomfort 5+ months after radiation and chemo was completed?
-Have others suffered from Nuaprothy, severe numness in their hands and feet after Cisplatin Chemo and if so how long did it take to get better?
-Should I be worried about this pain in my upper back and chest?.....I'm concerned the cancer has spread to my lungs but I'm not coughing, spitting blood or having any trouble breathing.
Thanks for any thoughts or advises you might have?
Regards and best wishes to all, Steven

Steven,
I'm happy to hear you are doing well. Don't let the bad news and recurrence stuff get you down or make you crazy. It is just a topic that all cancer patients have to face sometime or another. We just tend to pay more attention to it after we have fought the beast.
Thick stringy saliva. It's a result of injury to the salivary glands as a result of the chemo and radiation treatment. This can take a long time to improve and unfortunatly for some it never does. I'll send you some info on a future post on things you can do to try and deal with it and possibly improve it.
Throat pain. Can be a result of treatment, chemo and radiation I suggest you talk to your Dr.'s.
Neuropathy and numbness can be the result of chemo and will usually improve, once again, talk to your Dr.'s.
Pain in neck and chest. Did you have a neck dissection surgery as part of your treatment?
If so, this could be a result of that.
Do you have follow-up evaluation scheduled? Ask these questions.

The internet can be a great source of good information. I have found that there is also a wealth of inaccurate and wrong information on many sites that can scare the hell out of people. Be careful what you believe.
Remeber, every cancer is different, every patient is different, and every treatment will affect people in different ways.

I hope this is of some use to you.
E-mail or PM me anytime.

Cheers,

Mike

Hi Steven - I wanted to welcome a fellow Atlantan. I am sorry that I can't really answer your questions related to radiation and chemo side effects, as I did not have either, just surgery. But I can definitely relate to your fears about recurrence, as I think most of us here can. Unfortunately it's something that we all live with but I try hard not to let it overtake my life or thoughts. I have learned to be thankful for the good things in life, and not wait to enjoy them!!!

Steven, welcome to this site. I did not experience any of the saliva problems you are going thru. My biggest side effect with saliva is the lack of it. I constantly keep a bottle of water with me 24/7 no matter where I go. If I cough or sneeze real hard then I feel the pain in the back of my throat. From the way I read your post it sounds like you may be suffering from data overload. Sure it is great to be informed about what you are going thru but even with information, it can be a tough thing to handle. Don't convince yourself there is something wrong. If the pain in your chest is uncomfortable then call your MO and ask about it. In regards to the numbness, yes I had/have it. The numbness in my fingers is pretty much gone but both of my feet feel as though they are asleep all the time. The way I look at it now is this damn sure beats the alternative. Who are your docs at Emory? That is where I had my treatment and really think highly of all my docs.

Welcome, Steven.

I am five years out from surgery, rad, and chemo, although not for base of tongue.

The neuropathy I experienced in my feet is now gone. My saliva, while slightly thicker than pre-tx, does not involve spitting, and I have plenty of it. As I recall, this condition did not happen overnight, so hang in there.

About throat pain, I do know that when I got tense, shortly after treatment end, my throat would hurt.

I would guess that the worry you express, understandably, is causing a good deal of stress, which of course will cause muscle pain. Going from being extremely active to nothing, will play havoc with your muscles also. Try some gentle stretching, some regular walking. Physical therapy or even massage may help a good deal.

Everyone heals at a different rate. Try to accept that you are now cancer free and go forward with that thought. You can live waiting for the other shoe to drop, or you can just get on with your life. If you do what your doctors recommend, go to all follow-up appointments, and avoid obviously risky behaviors, there is not much more you can do, so worry will only slow you down.

Finally, where you are now is NOT where you will be in six months. You are a work in progress!

Joanna

Steven -- I understand exactly what you are feeling, though I did not have as persistent a problem with the saliva.

I am 3 months out from end of treatment for SCC at BOT. I am also a "recovering" civil trial attorney, having retired from that field after 20 years and moving into software design and project management. I have the neuropathy in the hands and arms, which in my case is partly due to muscle spasms in neck adn shoulders as the nerves from neck dissection come back to life, and partly from chemo/radiation.

I find myself thinking about recurrence a lot, though it is getting somewhat better after another positive follow up visit with my surgeon and MO this past week. I am waiting for the results from my first post-treatment CT/PET scan, but am not overly worried at this point.

The other comments are right on point -- recovery from this deal is a process, and it never goes as fast as we like. Enjoy the fact that you are cancer free, and just live the best you can for today. I work hard, play golf, go see my son play in the marching band at his college, and do whatever else I can to enjoy my days.

Stick around this forum -- great support and great information. Good luck.

Steven,

I too had the thickened saliva issue for about 4-5 weeks. I was spitting every 10 minutes or so. I was carrying a plastic cup with me at all times. I discovered that I had to retrain myself to swallow. If you are at the point now that you do swallow from time to time, it may be a matter of just retraining. It took me about a week to retrain, but I was then back to normal. Try focusing on swallowing all the time. Be carefull not to let the saliva accumulate in your mouth. Swallow as often as you can and you may find that it goes away.

Good Luck,
Rob J.

Dear Steven, Greetings!
I strongly suggest to you to think positive. Visualise yourself as free of disease and quickly getting back to full steam work.
I assure you that this works.
Getting a recurrence of the disease is not in our hands but to stop worrying about it and making ourselves miserable is. Stop worrying. God has given us this life and it is for him to worry about it!! You simply live your life every minute and enjoy the sensation of BEING ALIVE RIGHT HERE RIGHT NOW!!!!!!!!!!!
Love
Dileep

Hey Steven .Glad you found your way here,and are getting some positive replies to your questions.As i said in my e-mail yesterday,i am very sorry if pointing you in the direction of more information was counter productive,but i am sure these guys will help you through

good luck liz

Thank you all so much for responding. All of you had good advise for the taking and I am actually feeling better about things today. I think I was suffering from computor information overload and letting some of the negative stuff get the best of me. I know I need to keep a posative attitude. Whatever my fate shall be I need to spend whatever time I have in life trying to be posative about the future so that life will be enjoyable and not full of fear and depression. I know that and hope to do my best to stick to posative thinking about my future health.
Bill, my doctors at Emory are Amy Chen,surgeon: Dong Shin, oncologist and Peter Johnstone,RO. Dr. Johnstone will be leaving the end of October as he has taken a new position at Indiana University. Did you have any of the same doctors?
Regards to all, Steven

Steven,

I am three years out. Same basic base of tongue.

Did not have saliva issues, but HAVE THEY CHECKED YOU THYROID?

Radiation will destroy the thyroid. ALSO, you need to have your Vitamin D level checked.

Lack of these will cause a lot of fatigue. I would check ASAP.

Steve Daib

Hey Steven, yes Dr.Chen is my ENT and I have nothing but 100% respect for that lady. She did my surgery and on each follow up I have with her I see her not just an intern as with so many other doctors. My MO is Dr. Saba and the RO is Dr. Davis. I go and see all of them again on the 17th and 18th of this month. If everything is ok again this time then they will remove the port from my chest.Do I ever hope so.

Steve, I have had my thyroid checked as I suffered from severe low blood pressure during my treatment so it was checked then. I hve not been drinking juices as I was concerned that it would burn my throat so I probably should and will try taking some vitamin C. Thanks for the suggestions.
Bill, I just got a call from Doctor Chen's nurse that my CT Scan of the neck was all normal this time. Thats much better then my last report which resulted in my having to have a biopsy done. Will be seeing all my Doctors this week. I hope all goes well for you next week.
Just curious if you respect and like Dr. Davis? Since Dr. Johnstone is leaving I didn't know if I should ask to be transferred to Dr. Davis?
Regards, Steven

Hi, Steve,

I am a caregiver to my husband who will have his final radiation session this Wednesday. He has had the thick saliva for a couple of weeks so I am really sympathetic that it has continued for so long for you. Rob's suggestion above about being more aware and intentional about swallowing is one I will suggest to my husband as it sounds like it might help. Also, from reading the above posts I think my husband has some neuropathy so that explains (perhaps) some weird hand motions (sort of like when someone's fingers are numb) and his stumbling a bit lately (so thanks again).

One thing I'd like to suggest that might help you or others on this Board is the help that a psychologist might be able to offer(I'm a psychologist). People who have a serious disease such as cancer often have intrusive thoughts that create anxiety and interfere with living in the "here and now." Psychologists (especially those with expertise in anxiety and trauma- after all, having a life-threatening disease is an open-ended trauma) can be very helpful in teaching individuals strategies to manage these thoughts and/or behaviors. For people whose stress is such that it interferes with utilizing these strategies, some SSRIs can lessen intrusive thoughts and reduce anxiety in a very short amount of time so that they can then utilize these strategies. I know I have had to use everything I know about coping and have relied on all of my psychologist friends to get through this and I cannot even imagine how difficult it is for the person with cancer.

Please keep posting about your progress!

Sophie - caregiver to husband with Stage 4b tonsils and base of tongue SCC

Steve,
Don't get too discouraged with the slow recovery. It has been said - and we certainly found it to be true - that it takes a month of recovery for every week of treatment. My husband received 7 weeks of radiation and chemo and, actually, 7 months later he was still very weak, had difficulty eating most foods, etc.

Like you, he was a very active/athletic person before diagnosis. At close to 5 years since his diagnosis, he is back to being the skier and hiker that he used to be. And he is now eating almost anything (except very spicy or very dry foods).

Best to you as you continue your recovery.
Anita

Hi Steven,
Has anyone suggested tussionex for the stringy saliva? I know that helped my mom tremendously.
My mom's RO said he wanted to wait for some time before he ran any new PET/CT scans, he was worried about scar tissue from the treatments.
My mom has been a little unbalanced the last two days, I am now wondering if that could indeed be neuropathy. I had read about it in the beginning of treatments but had forgotten about it until I read your post. >>> Thank you! I am always amazed at how much I learn from someone else who is asking questions.
Try not to fret so much --how's that expression? my dad was born in raised in Cherokee County, GA. -- try to enjoy today, find a positive in as much as you can. I see my mom starting to slide down worryhill, I know it will just exhaust her. I am not making light of any of this, it is so frightening, mind consuming, and generally overbearing.
I have to say that the internet scared the hell out of me, till I found the OCF. I appreciate all the honesty and stories, and the absolute acceptance from everyone. It has been a gift for me.
Donna

I took Robitussin for the thick saliva, which comes and goes. Dileep is right about visualization, it can work. I used it with a vengeance during my treatments and fared quite well with it.

Steve, Yes I would suggest you speaking to Dr.Davis. I would even recommend it. My understanding is that all the RO's work together to a degree and wouldn't you feel more comfortable with a team that already has a working knowledge of your case? At least meet with him and make your decision afterwards. I am glad to hear your scan came back great. It sure gives an easy feeling when you get that kind of news. I totally feel I will get the same response when I do mine next Monday. October 16th is the 1 year anniversary of my cancer diagnosis. Boy talk about mixed feelings. Oh well, take care and stay in touch.