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Go t MDANDERSON. .

RE: Excessive mucus/phlegm

by plines - October 29, 2015

Hi Michael-

I too had thst after radiation.  I used a suction machine, which you can get through home health places.  It really helped clear that junk until things get back to normal.  Biotene (dry mouth over the counter stuff) also helps moisten your mouth.  Drink as much liquid as you can.  Be patient, it should improve soon.

Time, time, time.  Your body has just been bombarded with "poison" to kill the cancer. Which by itself would cause fatigue since chemotherapy unfortunately doesn't just kill cancer cells.  Healing takes rest. Don't be afraid to rest!  When I finished my treatment (radiation & chemo) I too was done in. My physician sent a physical therapist to start me on a regime of strengthening exercises, increasing as I re-build muscle and energy.  Set small goals each day....walk 1 block for a couple of days, then 2 blocks, etc.  If you have ever worked with free weights start with 1 lb. dumbells and graduate as your strength increases.  Moving your body increases endorphins which also help fending off the "tired" feeling"  Doctors live and die by statistics which are "averages"  if getting back to normal takes longer than 1 month for you, so what. You have the rest of your life!

Good Luck

Get to a University Hospital that has a dedicated "Head and Neck" team.  The best are:

MDAnderson, Houston, TX

Memorial Sloan Kettering, New York, New York

Mayo Clinic, Rochester, MN

UCLA, Los Angeles, CA

Most University Hospitals have "head and neck" surgeons but the other necessary team members are not always at the center but in private practice in the community.  Head and Neck cancers are relatively rare and unfortunately do not get the "attention" that other more common cancers do like breast, colon, prostate, etc.  This is why it is so critical to find a center that really has a passion and program for this.

Best of luck to you.

First off, I hope you are being treated by a major University Hospital with a dedicated "head and neck" team.  I researched and found several that truly specialize in head and neck cancers.

As for losing a portion of the roof of your mouth, I have lost it all!  I hope you can find a "dental oncologist" who has vast experience with this process. (dental oncologists are dentists, with prosthetic as well as maxillo/facial training) I was treated by Mark Chambers, DDS @ MDAnderson in Houston and can tell you that none of my friends or family can detect deformity.

At the time of surgery (removal of maxilla/teeth) they placed an appliance (obturator) that remained for 1 week, then replaced that with a removable one with teeth.  This appliance also served as part of the stabelizing of my mouth for radiation therapy.  

Once the radiation/and chemo were complete the appliance needed several adjustments to adapt to the healing changes in my mouth and then after 3 months of healing was completely re-built.  I am now 3 years out and just had my obturator re-built at MDAnderson.  I can only say the most wonderful things about it and them. My smile is 99.9% the same as pre-op.  My speech is normal. I can eat anything. And, since I have no upper teeth to hold the appliance in place, the dental oncologists have created "wings" so that it is held in place by engaging undercuts in my mouth.  

I was treated for squamous cell of maxillary sinus.  Went through pre-op clinical trial as well as post-op radiation and chemo.  My doctors at MDAnderson do not recommend automatic placement of a peg tube unless the patient is unable to eat or drink or has too much weight loss for the same reason your tumor board folks stated.  Your swallowing muscles will atrophy (like any other muscle) with out use.  I ended up with a peg tube placed 2 weeks after completion of therapy due to mouth sores and serious weight loss.  I had the tube for only 6 weeks while my mouth healed.  Just note, the tube must stay in place minimum of 6 weeks.  But, this got me "over the hump".  I am now cancer free (3 years).

MD Anderson is absolutely the very best for Head and Neck Cancers.  In fact, there are only a few Medical centers in the country that actually focus on Head and Neck Cancer. I was initially worked up by a Head and Neck Surgeon (different from an Ear, Nose and Throat Doctor) at a major University Hospital in California. He proposed a treatment plan that included multiple other medical professionals, Dental Oncologist, Plastic-Reconstructive Surgeon and Radiation Therapist.  Only the Head and Neck Surgeon was located at the University Medical Center, all others were in private practice outside the Medical Center.  I asked for a second opinion and was referred to MD Anderson, Memorial Sloan Kettering and Mayo Clinic, Rochester as the major centers that focus on Head and Neck Cancers.  I chose MD Anderson and I can tell you, the team there is unique in this type of medicine.  All the specialists I mentioned as well as Dental Oncologists, Speach Pathologists, nutritionists among many are located on campus in Houston. MD Anderson has so many support services from housing assistance, translators, foreign visa assistance, social workers, peer assistance. I could go on and on!  I am 3 years out from a total maxillectomy for squamous cell carcinoma.  I have a unique prosthesis in my mouth and my friends and family really can not tell that most of my upper jaw is missing.  I speak normally, eat normally and am so thankful for these amazing people.  As a side note, I had some facial lymphedema which in other parts of the body is not reversible. However, the Speech Pathology folks have figured out a way to get rid of this permanently.  It's about a 3 month process of gentle massage and wearing a special compression mask several hours each day.  I completed the treatment 2 1/2 years ago and no recurrence.

The take away from all this is get treated at a major University Medical Center that has a specific program to treat Head and Neck Cancer. It is unique and somewhat rare and deserves the most specialized treatment.  If they offer you a clinical trial, take it, I did!

All the best for more cures to all who need them.

it takes time for taste to return.like 6 months to a year and longer.  Be patient

Hi-

I donated equipment to Ronald McDonald House on Holcomb Blvd. near MD Anderson.  I had an apartment in Houston while having treatment and also had food left when I returned home.

They were so happy to have un-opened food as well as the equipment.

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