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Who has recieved H&N radiation twice?

buellman91's picture
buellman91
Posts: 32
Joined: Feb 2012

I had SSC on my left tonsil in 2006 and base of tongue on the right side in 2012. I got rads only in 2006 and rads and chemo in 2012. I am now almost one year post treatment and  have still have partial anemia (low hemoglobin) and severe damage to my swallowing function (epiglotis is stiff and non functional) and my saliva is still MIA. I have apparently been aspirating my food and liquids since 2006 but have never gotten pnenomia. I am interested in your stories regarding saliva, swallowing, necrosis etc.

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

As you know, I am one who has had the full treatment twice.  These types of problems can be seen in people who have only been through rads once, but are going to be more common in those of us who have had two complete rads.  Hondo has had two sets or rads, and I believe now has a PEG tube.  I am just over a year  out from my second rads, and have some saliva, but not much.  I also have severe trismus.  And swallowing anything beyond pureed food is problematic.  I aspirate a little, but am fortunate that if I am really careful about what I eat, and how I eat it, this hasn't been a big problem---- yet.   I think  I've likely seen the maximum improvement I'm going to.  But I consider that to be darned good, considering the alternativeLaughing

 

The anemia is a different sort of a problem, which more likely relates to long term chemotherapy side-effects than anything.   In factt, it could be a problem that has nothing whatsoever to do with your cancer diagnosiss or treatment.   Have you now been worked up for the anemia?  If so, you should have a diagnosis established, and a plan for treatment.

 

best,

 

Pat

Ladylacy
Posts: 550
Joined: Apr 2012

My husband has been thru radiation twice since 2010 first for laryngeal cancer and now cancer at the cervical of the esophagus and lung.  Swallowing right now for him is about impossible and he has been on a feeding tube since May 2012 (second time when second round of radiation started).  Mucus is horrible for him.  He does not aspirate since his airway and esophagus are not connected anymore and he speaks with an electric larynx.  He gets a very dry mouth even with all the mucus he has.  He was able to swallow and eat anything he wanted (slowly and with lots of water to wash it down) until January and that was because his throat was closing off again and a large tumor was found and right now the doctor doesn't want his swallowing anything although he has been having a cup of coffee in the morning and is able to swallow that.  Yes he is going against the doctor's order, but at this point he doesn't care.

Sharon

buellman91's picture
buellman91
Posts: 32
Joined: Feb 2012

 Where was your treatment done Ladylacy? I recently had a baruim swallow test done at U of Penn in Phila. My epiglotis is stiff and inflexible due to the rads. My test was ruled a failure but I am having no problem eating soft food and despite having a rock hard lympadema lump under my chin it sounds like I made out OK. I had post treatment pain issues after my 2006 rads and am having the same issues now. I am on a series of Fentenyl meds which controls things well. Both times I got rads my MRI and Pets lit up and my doctors assumed my cancer was back. I actually had an "open wound" inside my throat this time. Docs biopsied it and it came back negative but they still sent me for 30 HBO treatments. My last MRI was showed reduced dysplasia and they finally decided the "spot" was radiation damage not new cancer. My saliva is still a long way off it seems. Pat, hope things have improved and again thanks for info.

Bill

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

as you said.  Hondo, you, me, KTeacher (though she's just now around after her fiasco) and a few others who don't post all the time.  I was radiated in a fairly big center, with a very active ENT program.  Even so, they hadn't reirradiated more than a few dozen of us.   A really big referral center, like MDAnderson may have a thousand patients now, which isn't a lot, considering.  Glad to hear all that was necrosis rather than cancer.  Told you it would beLaughing  We all just do the best we can.  I just got out of the hospital myself.  Woke up a week ago, half blind in my right eye.  Turns out I'd thrown an embolus from my carotid artery, which had severely stenosed from my rads.  Got a good intervention, ballon angioplasty and stent placement, and I'm back home again.  A little loss of vision, but feeling pretty lucky.  Time to carry on......

 

Pat

Ladylacy
Posts: 550
Joined: Apr 2012

My husband's second round of treatment (radiation and chemo) was done at Emory Winship Cancer Center in Atlanta, GA.  He had a great radiation/oncologist who really took time with him as well as the ones doing the radiation.  We had been told to watch out for the cartoid arteries but so far he has had no problems with them.  Right now, until Thursday, when he has a follow up with the H&N specialist they don't want him swallowing but he has had a couple of cups of coffee the last few mornings.  But before the procedure to try and biopsy his esophagus last week, his swallowing was very bad.

We had been told that there could be no more radiation after his first round so we were very surpised when they said they would do a second round when the cancer was found at the cervical of his esophagus.  This time with the recurrence there will be no radiation since the growth is in almost the exact same spot, we find out tomorrow, if chemo will help.

Sharon

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

to your husband.  Boy was I ever motivated by the desire to have another cup of coffee.  Through all of my treatment, I visualized myself sitting on the porch in the early morning, having a cup.  Sounds insane, but it strongly motivated me to carry on.  He and I are much the same.  Ive had all the treatments possible.  Now its out of my hands.

 

Pat

KTeacher
Posts: 1042
Joined: Jan 2011

I just finished my third treatment for the beast.  In 2010 I had my first go around, just about a year later a lump in neck.  More surgery, neck disection and radiation.  I did return to work both times, water bottle in hand.  This past September I started having double vision, took more than a few appointments, cancer had gone up nerve in my cheek and on to optic nerve, I had to have my eye removed and this time I had chemo and rads.  Sinus abcess in the middle of treatment and another surgery.  I just finished treatment.  Glue spit, dry sinuses, gag sometimes, hopefully it will improve.  I am eating food slowly, not having to rely on Ensure.  I do heal well from my surgeries.  Learning to live with one eye.  Thankfully, my husband is a most excellent caregiver.  This fight has been hard on him.

I may not be the most encouraging right now, just finished and going through the 'gifts' from radiation, but still glad to be here.

tesa's picture
tesa
Posts: 122
Joined: Feb 2011

KTeacher, I'm sorry that you've had to endure so much lately. You're truly a fighter!

 

 

meinken's picture
meinken
Posts: 38
Joined: Jan 2010

Just finished my 2nd rad/chemo treatment in Nov 2012.  Had one set in early 2010 for nasopharangeal.  This time there was a new tumer near the eye orbit.  In between, had open flap/replace eye orbit surgery.   I can still swallow.  but lost the use of the right side of my mouth.  I'm taking Evorax(?) for some saliva generation.  With the second rad/chemo, I'm sure I will have more issues down the road.  But, the alternative to stop fighting is unacceptable.

buellman91's picture
buellman91
Posts: 32
Joined: Feb 2012

I was under the impression that the only resaon I could get radiation twice was because it was on different sides of my neck and that IMRT rads were more localized. Regardless, my throat got the double dose. I just finished 30 HBO treatments and my doc was going to prescibe 10 more. So, I decided to have some bad teeth removed as the protocol is 20 before extractions and 10 after. My dentist told me that even if I need extractions in the future these current HBO treatments is all I will ever need. I realize I have switched the subject matter here but has anyone heard the same thing?

Thanks, Bill

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