Just wondered if anyone is going thru or have experienced something similar to what my sister is experiencing. When she was 3 weeks post treatment she was able to start swallowing a little, (we were thrilled and encouraged), was up to a bottle of water a day, and not using the suction machine. That lasted for about 3 weeks and the last 2 weeks she has had difficulty swallowing, leading to choking and dry heaves. She started using the suction machine again yesterday. Since her tumor is located by the carotid arteries, she lost the ability to swallow before treatment even started. Also having more pain, not just tightness of the neck, but ear pain once again. Is it normal in the post treatment period to regress somewhat from week to week? We were so encouraged when she was able to start swallowing a little, she really misses eating. All in all she is such a trooper and is handling this with patience, we just want to see her better and healthy once more, just as all of you hope for yourselves and your loved ones. Has anyone met with an oral pathologist before? Her physical therapist recommended she do this.

every time robin turns a corner and thinks he is on the way to recovery he seems to hit yet another brick wall.He started to feel hungery and tried to eat a little only to end up frustrated and in tears.Every time he thinks the mucous is going away it comes back even worse!!We are great advocates of one day at a time as each time he goes backwards next time he is a little further forwards.3 weeks post tx is still very early.Dont despair

Liz in the uk

Nancy, at what intervals is she seeing her Oncologist? I think I would want someone to look at her at this point. Amy in the Ozarks

Liz and Amy,

Thanks for the reply, think we'll see if she keeps declining and maybe at that point see her oncologist. He saw her two weeks post treatment and said he would see her again in 3 months. She saw her radiologist at the same time, but will see her in 4 more weeks again. She still sees her HN surgeon and will also see him in 4 more weeks. Seems her oncologist would want to see her more often, but said to call if anything changed. She does have a tumor in the lung, but it hasn't changed since she began her radiation and chemo, just stayed the same. It's the fifth location this cancer has spread to. She's been thru so much and I love her dearly and feel really concerned when we see progress, and then we seem to back pedal. Hope it's just be part of the healing process. Thank you again for your input, I really appreciate it.

Nancy

I'm in agreement with Amy on this one..........I think she needs to be seen. Not trying to alarm anyone, I just think the changes should be addressed and not sure I'd wait 4 weeks to do it. Please keep us informed.
Minnie

It is possible her difficulty swallowing coming back is becuase of an esophageal stricture, caused by the radiation, that is getting worse. If so, that should be diagnosed as soon as posible since the surgery required to fix it will be much worse if it closes over all the way and (I know this from experience) it can. This can be diagnosed htorugh a modified barium swallow test--has she had one of those? She should definitely see some doctor as soon as possible and not accept a wait until she knows exactly what is causing this.

Nelie

Hi All,

My sister and her husband saw her surgeon a couple of days ago and he scoped her throat, said one of her vocal chords had not split as it is suppose to, guess this is due to the radiation. She was given the option of a tracheomy to help with the breathing, at times she feels she is suffocating. He said he didn't see cancer growth, so we are relieved. He said in time it would split on it's own, but meanwhile offered her the option. Was suppose to see her speech therapist today, but had to cancel her appt. was vomiting this morning. Have you heard about using electrical impulses to stimulate the swallowing response? I think they have done it with stroke victims, just wondering .....
The pain issue is another area we are concerned about and Tom is emailing doctor the check if increasing the fentayl patches is recommended (she is taking 2 patches at 25mg each) and still has breakthrough pain 3-4 times a day. I just hope that the tumor is dying and this is the excess tissue causing the pain, her oncologist said she will always have scar tissue around her carotid arteries.

Thank you for your concern,

Nancy

Connie, glad to hear that the surgeon saw her. It does sound like she needs more pain control. You might ask about hydrocodone as a boost to the fentanyl. Sorry, I don't have any experience with the electrical impulses. What was the cause of the vomiting? Hope she continues to improve. Amy in the Ozarks

Her Fentanyl dose could be a little light. I was up to 75 mcg and others here have had doses as high as 150 mcg. I had daily nausea for quite a long time post Tx. I suspect it may have been caused by constipation from the Fentanyl, radiation sickness or mucositus. Be sure that the nutritionist has a handle on the issue.

3-4 times a day breakthrough pain is fairly typical (I presume that these occur when she is trying to swallow or some other event). If not then her long term narcotics should be increased. Be sure to let the oncologist know these things - and give the pain a rating between 0-10 (10 being "unbearable). Morphine is a better choice than hydrocodone as it is much faster acting. 30 minutes for tablets and 4-5 minutes for the oral liquid form. It's also much more potent.

RT takes a lot longer to recover from than surgery.

I would speak with a physical therapist before using a TENS unit on the neck. Radiation will turn the tissue fibrous (permanently), so it may either have no benefit or make things worse.

She's still early in her post radiation phase, so this is typically the worst time. Like others have mentioned, I am a little surprised that she is not followed more closely considering her history (like every 6-8 weeks).

The clean scope is good news though and she should start turning the corner shortly.