How long after radiation will the pain finally get easier?

Skiffin16 said:

Patience
Unfortunately you have no choice....

Between the ENT or you Rads MD, one should also be able to provide you more meds if needed as well. The comment about not prescribing you anymore pain meds because you are masking the problem is just rediculous to me.... If she or you knew what the problem was, you'd have a remedy for it. Even though she is suggesting you are causing it by not using the PEG is another comment that just seems crazy to me...OK, I can see that you could be irritating it. But you are saying you are having blisters form...see what your ENT has to say. I can only hope the ENT gives you something better in terms of a diagnosis and remedy.

Let us know how the visit goes...

Best,
John

ENT appointment
Had my appointment with the ENT this morning, told him exactly what my radiologist said. He looked at my throat, then held my tongue with gauze and looked at the back of my throat with a mirror. After the exam, he looked at me with a semi-smirk and said "What you have is muscousitis. Everyone gets that after radiation like you had. Does it usually last this long? No. You're one of the lucky few. The lining of your throat is very inflamed and red. Do not start using your feeding tube unless you have to. Take your pain meds and eat. Have a nice day, see you at surgery." He then prescribed me the medication I need to eat, in fact enough to probably last through surgery. My radiologist must have just been having a bad day!

Hugs!
Karen

Question about Post Radiation of the mouth and follow up

Hi everyone:

First let me say that I am so happy to have found this page. It has been a tough couple of months for my family and there is nothing like having a place to express our hardship and get some advice. In late June, my mother was diagnosed with stage 2 Squamous Cell Carcinoma of the tongue , she had surgery and 33 sessions of radiation. She also had a PETSCAN done and the rest of her body was not  effected. She is now done with radiation and has entered her fourth month of post -treatment. However, she still has problem eating and her tongue , as she says, stings when she eats normal food, so for now she is sticking with fluids and really soft food. Needless to say, she has lost a considerable amount of weight but her energy is good. How long did it  take for you guys to feel normal when eating, I know some have discussed their expereinece I was just wondering if you could give more more details. Also, how long after radiation did you have your MRI follow up, her doctor sees her every month. But her EMT has suggested to wait a few weeks until her MRI so the swelling and soarness would recide a little. As her daughter I am a little scared, I know you all were , she doesnt live in the US but has good care , I just dont know how to encouarge her to eat more or shoudl I even? My father is taking care of her and sometimes I worry about him too, if you have been in a situation like mine where you are far away or have kids that were far from you and could visit every few months , how did you coup ? I can't help but feel guilty. Sorry for rambling, for some reason my fingers were typing themselves.

I just want to say, I respect you all for fighting and helping your loved ones fight..as we say in my culture and yours "This too shall pass"
 

Thank you and Happy New Years 

Saranaz 

Barbaraek said:

Saranaz, we're glad you found us...

and hope that we can provide you with some answers and support. More people will see your post if you start a new thread to introduce yourself and ask questions.

My husband had nasopharyngeal cancer with chemoradiation (35 radiation sessions). We are now 5 months out from the last radiation treatment and he still finds some foods burn or sting a bit. He can taste the first few bites and then the taste goes away. Most of his diet at this point consists of soups and purees and soft foods. It was a big victory a few days ago when he managed to eat spaghetti (cut up) with alfredo sauce (a tomato based sauce was too acidic). He definitely can't tolerate anything spicy. Others will have very differnt experiences - with food it will be trial and error. One thing I am glad I did was buy a few cookbooks that are meant for people who need easy to chew/easy to swallow meals. You can find several on Amazon.

It's encouraging that your mom's energy level is good! Her recovery timetable sounds very similar to others who have posted here. My husband's first post treatment PET was about 3 months post radiation. then there will be follow up MRI/CT scans every 3 months (our next one is due in January).

It's hard to be away from parents who are going through a health challenge, or even aging parents...I know you want to be there to help and the temptation is to worry a lot.. are your parents hooking in with any support services? Do they have some friends or neighbors who are willing to help from time to time? We don't live near any family, and my husband's co-workers were absolute gems for us.

Good luck, and best wishes for your mom's recovery. We say it over and over again here - TIME will make a big difference. Be patient, hang in there, and yes "this too will pass" and you will find yourself adapting to a new normal.

Barbara

Thank You

Dear Barbara

 

Thank you so much for  the reply. I read your commnets to my mom and shedoesnt feel so alone . I am lucky to have a very close family my aunts , uncles and cousins have been very attentive.I will look for cookbooks on Amazon , do you have any facvorites? My mom's ENT has told her to wait before her next MRI for a few weeks , but she is scheduled to see her Dr this week and we will ask him again. I am grateful to be visiting her over the winter break. I will keep your husband in my prayres, tell him we are ALL in this together.

God bless and Thanks Again

Saranaz 

CivilMatt said:

welcome

Saranaz,

Welcome to the H&N forum, I am glad your Mom is on the path to “new-normal”.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).

At going on 4 years post my tongue still feels (not bad) funky.  Kind of like it is waking up from Novocain or in my case the results of radiation.

My path back to normal eating took a (happy & interesting) 7 months.  I tried everything and tried constantly, but my taste and feel aversion to most foods ruled the day.

Now, my new-normal resembles my old self, but with more water, more chewing and more time.

The new self may not be a reflection of the old self, embrace the new, learn to live with it and be “cancer free” happy.

 

For me, PET/CT scan at 3 months 2 or 3 CT scans over 3 years, numerous visual scans & MRI at 3 years to check for radiation damage (none).

 

Matt

Thank You

Dear Matt:

First let me say how glad I am that you are doing well. I know it must have taken a lot of sterngth and I appreciate your information. Seven months sounds reasonable and shows that perhaps we have been unrealistic  and expecting too much too soon. It seems that most of you have had your scans three months after radiation my mom is entering her fourth month , as I  explained earlier I will ask her doctor this week again.

Wish you health and happiness this year 

Saranaz