Good Morning. I am the spouse of a tongue cancer patient who has had his third occurrence diagnosed less than three weeks ago. I am so happy to have found this forum as we both need all the support we can get right now. He is having a tough time deciding what to take as his next course of treatment.
Carl is going to be 39 years old in May. He was first diagnosed in March of 2003. He underwent a removal of approximately a third of his tongue and a right-sided next dissection. He had two lymph nodes that showed up on his Pet scan, thus the recommendation for the neck dissection. After he recovered from the surgery, he then went on to have radiation directly to his neck and chose not to radiate his tongue at that time. After the radiation was complete, he went approximately five to six months and did wonderfully. He has hardly any speech problems.
Then in December of 2004 he was rediagnosed with a recurrence on the tongue. We then proceeded to get an opinion in 1/04 for a near total glossectomy. We were both very frightened of this surgery. Not only for the lasting effects that this could have on his quality of life, but also financial reasons....it seems the list is aplenty of things to think about. He then went back to his oncologist and told her he needed other options instead of the surgery. We did feel we were proly postponing the inevitable, but it wasn't an option either were ready to take. During all of this, I have expressed my thoughts and feelings to Carl, been as supportive as I can, but have left the final decision up to Carl. There's one thing that I have tried to do for Carl, and that's leave as much control to him as I can.
Carl then proceeded to have a round of chemo and direct radiation to the tongue. After that, he had a biopsy again and it came back negative for cancer. He did another round of chemo. He was decided "pretty much" that if the biopsy came back bad, he would seriously think of the surgery at that time. The surgeon told him he can't operate on something he can't find. This biopsy was very painful as they took a ton of samples from different areas of his tongue. They put him through another round of chemo after that biopsy. He was in remission for approximately six months and then rediagnosed two weeks ago about.
The hardest thing right now is dealing with the fact that he may have to have this surgery now. He is doing everything he can to avoid it. We would love to hear more information from anyone who has lived through this. The rub now lies in the fact that there are so many unknowns for him. He really would like to talk to others that have had this type of surgery.
I read quite a few of your stories you all have shared on the site. Vicki Lynn, we would love to chat with you more regarding your fight. What an extraordinary person you are. You have a lot of the qualities that Carl has had regarding his treatments.
Carl is meeting with his oncologist today to find out more information on a trial in Texas regarding a drug called C225. He has lots of questions regarding the trial. We have both been better able to talk and communicate our thoughts and feelings together regarding this the past week. It is increasingly difficult to face the fact that he's going to have to go through some more treatment again.
Thanks for listening and communicating your stories and thoughts with us.
Heidi & Carl
Florida

Hello Heidi and Carl

Sorry to hear about the difficult journey you are having. I pray things get better for you both. I am sure Vicki and the others will soon come along to talk to you.

Best wishes
Vinod

Heidi & Carl, WOW, you two have been to HELL and back haven't you? We, Ric & I know the feeling. I read and re-read your post and I am just so damm angry with this disease. You know one would think that if you had it once and they got it--How is it that it just keeps coming back and back and back. This ANGERS me more than anything else. With that said, Carl you have to decide what is the right course for you. We all have to make that decission don't we. Of course the family members play a lot into that decission. I was NOT ever going to have this surgery. However when they told me that without it I would be dead in 3 months, well you can imagine how fast I changed my mind. Who wants to DIE at 47......NOT ME!! And you are only 39,,,,. It is not a easy operation Carl. I will not lie to you. It takes a lot out of a person, or it sure did me. And let me tell you I am as strong as a horse. Well I was. There was nothing that I couldn't do. Now there is little that I can. But I still work circles around most of the CANCER patients. So I am better off that some are. I don't know what the future has in store for me. I just know that because of that horrible, painful, wanting to just die everyday for the first 6-9 months, I am still alive. I can still love my husband, my family and friends. I am still here to try to help anyone that is about to face this or has already faced this. I am also here to learn from anyone I can. Email me at proudokie@excite.com if you want to talk to talk to me private. I am also on aol messenger. proudokie46. We could chat on line if you would like to do that. Anything that I can do to help the two of you, I will be more than proud to do. Heidi, you hang in there. I know from watching my honey, Ric, that this is tearing you apart. I am so proud of the line that you wrote that you are leaving as much up to Carl as you can. I am so proud of you for doing that. I know that there are times that Ric wanted to just strangle me.,LOL,,because looking back if this were to happen to him,,,I would want him to have the surgery because I couldn't face losing him either....You have to be able to wear the shoe....If you cannot put yourself in their place....then you will NEVER understand. Please know that you are in my prayers along with so many others that are fighting the fight of there lives......Some are and they don't even know it yet,,,,,,,,,,DAMM I hate this DISEASE!!!!!!!!!! More and more everyday.........Always, Vicki Lynn

Heidi & Carl, you certainly seem to have had a rough time. However, now you've found thos site I hope that you manage to find some useful information. Everything you read may not be as positive as you might expect, but most people here are realists.

Vicki has also had really rough ride, but as you say she is a really remarkable person. I'm sure she'll give you some unexpected insights.

I was diagnosed with cancer the of tongue back in 2001 and things were so far advanced that the only treament worthwhile was a total glossectomy with a "radical neck dissection" follwed by a course of "intensive radiotherapy". The team treating me were very, very up-front. They explained where I would be scarred (they drew on my face and neck with crayon), told me that I would not, ever, be able to eat solid again and that I would have to take the majority of my nutrition through a PEG tube. I was also told that I probably would not be able to speak again.

Well, first of all the scarring was in way as bad as I expected. No solid food hasn't given me any real problems after the short initial period. I used to really love my food so I found it strange that only thing I really, really miss is TOAST !! I also used to enjoy wines and spirits but now the spirits all taste like acid but I've found a couple of wines I can drink. I do get through copius amounts of tea,coffee,soups,ice-cream and similar. Oh yes, and I can talk maybe not as clearly as before but enough to be able to annoy people.

Now that's just how I found things but you'll probably hear from people who have had dreadful problems, weight loss, adverse reaction to radiotherapy and so on. I can only hope and pray that things go well for you both and I hope you'll keep us advised of how things progress.

Vicki Lynn and Pikeman:

Thank you for your responses. I am so happy to have found this board. I cannot tell you! Your honesty and strength is remarkable.
I had a friend say to me the other day this:
I didn't realize what dealing with cancer would be like (her father-in-law has just been diagnosed with brain cancer). It's like being a part of a club you never wanted to join! LOL Just a bit of humor to lighten things up a bit.

On another note, I think reading your posts and some others I found on the oral cancer site have REALLY helped Carl feel like he's not alone. He has cried reading these posts at times, but then again, he seems to be taking what you all are saying to heart and really thinking about it. It's just what he needed.
He finished eight hours of chemo today and is doing okay. A few things are bothering him..nausea, phlegm, fatigue feeling, but overall he is in good spirits.
I went to see him toward the end of his chemo today after I got off work, and he and a new "friend" he met at the doctor's office were "racing" to see who could get out of there first! They were kindly teasing each other about whose bags would drip in faster, etc. They also were planning their crossword puzzles for tomorrow.
So thank you again. I look forward to talking more with you online.
Vicky Lynn, I have put you in my aol messenger...I'm htshei screenname, so you'll know who I am when you see me online. Or feel free to IM me if you see me first.
Heidi

Heidi, I recently finished a course of chem for my lung cancer and you tell Carl that the phlegm, nausea and tiredness are, apparently, amongst the commonest of all reactions to chemo.

If you find a way of getting rid these little annoyances please ley me know !

Hello Pikeman,

I have just been reading your longer posting of 10th March, 2005 and followed that by your next 10th March entry. A couple of items contained therein interested me.

First: You were diagnosed in 2001 with advanced cancer of the tongue. Did you not get any symmptoms before it had developed to the advanced stage?

Your initial medical prognosis sounded brutal, but subsequently proved less so.....congrats.

In your second posting you mention you recently had a chemo session. This after 3+ years? My earlier reading of your postings, which I found specific and helpful, was that you were progressing well. Why additional chemo? Have I missed something?

As always, wishing you well. Regards, Fridge

Pikeman,

Sorry, I missed the lung cancer item. When did that appear?

Regards, Fridge

Pikeman:

After the three days of chemo last week, Carl has been completely down and out with bad flu-like symptoms. He says even his hair hurts. Is there anything they can give him for pain or to sleep? He is really miserable and hasn't been unable to go to work since his surgery. He has missed two days this week, but it's okay as he really just can't do much. He grimaces when he gets up and down with joint pain, etc. Thank you for any advice.
Heidi

Fridge - apologies but I've only just seen your posting of 10th. I get the feeling that I'm missing reading quite a few posts.

Tongue cancer symptoms - well I thought I just had really bad mouth ulcers. I'd been to my doctor 3 or 4 times and he couldn't see anything. Then after feeling my neck pronounced glandular fever. By now I was experiencing difficulty in swallowing. As luck would have it I had to visit my dentist for the 6 monthly check. As soon as he looked in my mouth he put his tools down, telephoned the hospital and made me an appointment for that day. The rest I think you know.

Anyway, as you might have guessed the chemo was for the lung cancer. It appears to have paused the growth however temporarily.

Can't remember when I first mentioned the lung lung thing. Thanks for the interest.