Hello All: this is the first time I've visited this site. I'm very impressed with the interaction I'm seeing, so I'm going to ask for some input.....and I'm not very good at asking people for help.....but HELP!

My wonderful husband was dx'd with base of tongue cancer, T4A in December. He began treatment this week. He will have radiation (43 to complete) and chemo (3 total), no surgery. He saw 5 doctors from Feb 2004 until it was finally dx'd in December when he was 2 days away from brain surgery.....THAT would have been from the previous misdiagnosis. Anyway, we are very close, and I am so frightened. He is just so very weak and tired.....I can't believe how fast that happened. He has been in pain and on narcotics since Feb '04, but the treatments are really difficult. Any info anyone can provide would be helpful.
Thanks,
Michelle

Welcome Michelle, there are friends here for you to lean on. If you take a look at some of the earlier posts (or search button) you will find a lot of answers for you. Feel free to ask specific questions.

Take care

Hello Michelle,

Welcome to OCF. Sorry that You had to find us but am glad that You have. Sounds like Your husband and You have definetly gone through some hell in the past year. Like Mark says, don't hesitate to ask specific questions here and read all You can. We are all here to help each other out in any way that we can. Sending out the positive vibes Your way.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

Thanks Mark/Jack: there is alot of great info out here. I'm glad I found this site. I wish I could get Dan (husband) to check out some of the survivor stories here. No interest. He had the first week of radiation this past week....5 rad and 1 chemo. He is having such a terrible time with thick mucous.....any suggestions?

Hi Michelle,
and welcome to the forum. It is a gift to us to be able to help you in any way we can. Most of have had similar issues, pain, narcotics meds, fatigue, weight loss, nausea, etc. Not to mention misdiagnosis. Chemo and radiation only are a quite common treatment of choice for base of tongue cancers. Radiation is no walk in the park but many here have survived and gone on to normal, productive and somewhat enriched lives as a result of the experience.

This is the scariest time.

It is not shameful to ask for some meds for yourself to cope with the anxiety. Sometimes the local cancer society can provide people to talk with you one on one. Ask the hospital social worker as well about support groups and financial help. Since this is a multinational group there bis usually always someone up late to answer questions for you.

We do recommend strongly that you are seeking treatment at a comprehensive cancer center. There are links to the NCI and NCCN comprehensive cancer centers in the resources section here.

Michelle,

I'm sure other people will give you some suggestions for coping with the thick mucous, but the first thing that comes to my mind is advice that I received from Joanna, another OCF member. Roll up some gauze squares (4x4" ones work well, but any gauze will do) and have Dan put them in the gutter between his teeth and cheeks. The gauze will soak up a lot of the mucous. This works especially well at night, allowing one to sleep longer before having to spit or wipe out the mucous. As for wiping out the mucous, Puffs brand tissues are strong enough to do the job, but are soft enough to not irritate.

Since Dan is in a weakened state, I think he would be helped by having a suction machine similar to the ones dentists use. If the doctor writes an order for one, many insurance companies will pay for it. We rented a portable Yankeuer (sp?) from a medical supply company. It was a huge help. Sleeping with the head elevated can help, too. Many OCF members have slept in a recliner for weeks and even months during and after treatment. Having sufficient moisture in the air is also important. Running a humidifier can be a great help in keeping the mucous thinned out.

Rainbows & hugs,
Rosie

Michele, welcome to the site. Sorry you had to find us. It would help if we had more information about your husbands tumor. What stage it is, where it is located, where he is being treated, his blood status (ie, white and red blood cell count and other stats), and any other details would help us help you. Meanwhile, you are both in my prayers.

Michelle,

Welcome to the neighborhood! I can certainly relate to Dan not wanting to come to this site right now. I am sure his head is still reeling from all the doctor visits and the whisking into the start of treatment once everyone agreed what he is facing. It sounds like your wonderful husband has a wonderful wife by his side. That in itself is certainly a great thing. He is very fortunate to have you and your love during this rough time.

Make sure you take time for yourself so you can recharge and be all you want to be for Dan. Also, make sure Dan is taking in plenty of liquids either orally, intravenously or through the PEG tube if he has one. The side effects are much easier if the body remains hydrated.

Arm yourself with as much information as possible so you can help maneuver Dan through the maze ahead.


Ed

Michelle:
Incompetence is what you have had to deal with, it is absolutely atrocious that this man has been misdiagnosed and left to suffer for so long. Unfortunately, he has some miserable days to look forward to soon.
Either consult with a Gastro Doc and have he/she wait in the wings or just go ahead and get a PEG tube. But , don't be fooled a PEG will be required soon into treatment. As you will notice, my tumor was almost a carbon copy of your huusbands. I had no surgery either.
Darrell

Hi Kirk: I'm not very OCF site/forum savvy yet, so I hope you receive this. Sorry I didn't provide enough information. Dan is stage T4A, base of tongue, left side, with 2 nodes involved. He is being treated at the NC Cancer Center at the University of North Carolina in Chapel Hill. He was diagnosed at University of Pittsburgh Medical Center. I don't have the stats right here on the blood work, but I will forward them asap. Thanks again......the people here are wonderful! I'm so glad that I was able to find you! Thanks to all.