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Anyone have experience with any of this????

DanaNAndy
Posts: 7
Joined: Nov 2004

I have an interesting story. in the early 90's, my mom had a lymph node in her neck that kept swelling and swelling. Years went by, and finally in 1996 they removed it. It was full of stage 3 squamous cell carcinoma, poorly differentiated. She went to sloan-kettering and had a radical neck dissection to find no other affected nodes. Many scans, scopes, and the like failed to show the primary tumor. She decided not to take any action at the time and have yearly cat scans of her neck and chest.
All scans were clear until this year. Last month, her scans showed a mass in her mediastium as well as another node on the same side she had the neck dissection. Same cancer. She sees Dr. Stimson Schantz, who was once rated #2 in the world for head and neck cancers. He believes that he has now finally found the primary, a minute spot in the pharyngeal mucosal space. He believes it was there all along and spreading so slowly, it took almost 9 years to go from stage 3 to stage 4. Has anyone heard of anything like this before?
She's having to have radiation before they can take the mass in her mediastium because its too close to her carotid right now. She starts radiation Monday, followed if needed by chemo.
I am terrified. Can anyone tell me what to expect? My mom is 49 and lives alone. I live with my fiancee and I'm wondering if i should move back in to take care of her. Will she be too sick to take care of herself? what are the odds that the radiation and/or chemo will take care of this? Is the fact that it took 9 years to get this far a good sign?

Also, they want to give her a shot before the radiation to "save" her salivary glands, but say the shot will make her feel awful. Anyone have any experience with this? I really don't know what to expect, and i'm scared to death for her.

Sorry for such a long post, wanted to give some background. Thanks in advance!

Dana

DanaNAndy
Posts: 7
Joined: Nov 2004

Also, wanted to add she is having IMRT radiation. My aunt had that for a salivary cancer and had VERY few side effects. She is only 1 1/2 months post radiation and no longer has a problem eating anything. Anyone else have good results with IMRT?

cindya
Posts: 4
Joined: Feb 2004

I had both IMRT (32 treatments) and the amiphonstine shots. The amiphostine did help salavage my salivary glands, and I didn't get sick from it until around halfway through. At that time the oncologist discontinued the amiphostine. While I still have some dryness in my mouth I am convinced it could have been much worse.

I was not as lucky with the radation. I had delays between my surgery and radiation because I also developed breast cancer. That delay led to a re-occurrence of the cancer in my neck prior to radiation. It ended up being almost 4 months before I could start radiation. The worst part about the IMRT is fatigue I sustained. By the end I was sleeping 16 hours a day and couldn't do much at all. Be prepared to help out with grocery shopping and errands as much as you can. I tried to do it all myself just to show everone I was tough.

Good Luck

egge
Posts: 20
Joined: Jul 2004

DanaNAndy. Here is our experience with neck/head radiation. My husband underwent 33 treatments and took a toll on him. He is recovering but radiation is hard on you. He is a 35 year old guy in great shape and all he could do was to lay in bed, the nausea was horrible, and couldn't really do anything at all. This may be different in your mom's case since everyone is different but my guess will be that she will need some help. Good luck to you.
God Bless!
Jessica Egge

DanaNAndy
Posts: 7
Joined: Nov 2004

Thanks for the messages. Mom is having chemo too, one day a week. Today was her first chemo day, and she was very sick all night. Don't know if this is from the shot for her salivary glands or from the chemo. Any ideas? She goes for a PEG tube tomorrow as a precaution. She only weighs about 108 lbs as it is (Shes a die hard exerciser and in very good physical shape, but a size 0 nonetheless). The drs are paranoid that she'll lose even more weight.
Are the odds good that the chemo and radiation will do the trick? I'd hate to see her get this sick and have to go through even more. Anyone else have a PEG tube?

thanks again!
Dana

laurena's picture
laurena
Posts: 16
Joined: Apr 2004

Hello DanallAndy, You and your mother need to concentrate on het well being now. I had this cancer a long time ago at 45, and I was very very sick and lost a lot of weight. Since your mom is already thin, it's imperitive that she gets as much calories as possible. PEG tube is good but if one has nausea it's still difficult. I drank a lot of carrot juice and other vegetable juices at the time. Saving her salivary glands is very important. Mine were destroyed and I now live with a PEG tube forever. However I hope that you will be able to help your mom and that she has many friends that will help her and give emotional support. All the best. God Bless.

Laurena

DanaNAndy
Posts: 7
Joined: Nov 2004

Thanks Laurena. Those like you are living proof one can get through this. She hasn't had to use the PEG tube yet, but after a day or more of radiation i'm sure she will. I just hope she will be able to eat again. The nausea is better now, but the rads is taking its toll on her mouth and throat. She said shes dying for macaroni and meatballs...LoL

D

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